Survivorship presentation on myeloma survivorship, my first four months.
Part 1 of 6. Proactive stance
1. Survivorship Pro-active stance.
Before I could move forward and fight my disease I had to address issues that would hold back my progress. There was to be nothing holding me back.
Ownership: I had to take ownership of my illness, it was my disease no one else’s. It was then I created my saying “my body, my illness, my treatment.”
Denial: When my doctor told me I had cancer, multiple myeloma, I did not want to believe him. I told him he was wrong, it was some one else’s results. Denial was short, I faced the truth quickly.
Emotion: Tears flowed; at times I could barely talk. I learnt not to let the emotions build up too high; it was that “C” word. I learnt how to release the emotion early, I learnt how to cry.
Anger: I was angry, why me, I have too much to live for, too much to loose, too much work to do. Talking it through with others helped. Like emotions I learnt to deal with anger as it happened, don’t let it build up.
No abuse: There was potential for abuse from me: mental, physical, emotional. My life philosophy of no abuse was reaffirmed. No abuse, not negotiable.
Confront death: Myeloma is a cancer with no cure, a consequence of myeloma is death. I was young, only 53, thought I was bullet proof, never considered death, had no time for it, death was for other people. I had to confront death, bring it out into the open to move forward.
Be a pro-active patient: I wanted to know everything about myeloma, treatment, the hospital system. Being a passive patient was not for me, I wanted to be pro-active.
Links to previous relevant postings:
You have cancer.
Decision made to be a myeloma survivor.
Confronting death from myeloma.
Showing posts with label Part 1. Show all posts
Showing posts with label Part 1. Show all posts
Wednesday, March 3, 2010
Sunday, February 28, 2010
Survivorship – The first 4 months
Late last year (2009) I gave a presentation to my myeloma group on myeloma survivorship, my first four months.
My presentation commenced with my condition at diagnose and I discussed if I wanted to be a survivor.
Some of my strengths are: Positive attitude, can see the big picture, don’t get bogged down with trivia, good planning and organisational skills, a willingness to learn, a self belief that I can do anything. How I used those strengths as part of my survivorship skills was explained in the six survivorship skills I identified.
Pro-active stance: Take ownership of my illness. Before I could move forward and fight my disease I had to address issues that would hold me back.
Myeloma support group: A support system with other myeloma patients.
Team Sid: A network of practical help and support.
Create a myeloma and medical knowledge base: To take ownership of my illness I had to learn about my illness.
Maintain a positive attitude: Continue what I always do, be positive.
Create positive affirmations: Compliments a positive attitude.
My next six postings will expand upon those six survivorship skills.
Two survivorship definitions:
Stages of survivorship: Debbie Moore LBF NZ.
Acute –Begins with diagnosis and spans the time of further diagnostic and treatment effects.
Livestrong - Lance Armstrong Foundation.
Survivorship begins at diagnosis, the moment your battle with cancer begins, and continues through your treatment and beyond.
Monday, January 25, 2010
The corridor
To reach my haematology day stay appointment at Auckland hospital I went up a lift, out into a lobby then turned right into a long corridor about 50 meters long (USA 46 yards). When walking that corridor prior to an appointment it was natural to be apprehensive. The corridor was long, giving one time to ponder.
After the second month I was responding well to treatment, test results were changing for the better, my way forward was working. That gave me a positive feeling when leaving the appointment.
After successful results the long walk back down the corridor was used to celebrate success. I would glance at Myra; my face would break into a big smile, with my arms pumping into the air I would say “yes, yes, yes”. A couple of times after my bones had mended I jumped up to click my heals.
After the second month that corridor had more good memories for me than bad.
A couple of years later during my plateau stage the day stay was integrated into a new building, the long corridor was no more.
The corridor remains as one of my early myeloma memories.
After the second month I was responding well to treatment, test results were changing for the better, my way forward was working. That gave me a positive feeling when leaving the appointment.
After successful results the long walk back down the corridor was used to celebrate success. I would glance at Myra; my face would break into a big smile, with my arms pumping into the air I would say “yes, yes, yes”. A couple of times after my bones had mended I jumped up to click my heals.
After the second month that corridor had more good memories for me than bad.
A couple of years later during my plateau stage the day stay was integrated into a new building, the long corridor was no more.
The corridor remains as one of my early myeloma memories.
Saturday, July 18, 2009
Summary of Part 1 "The beginning"
This concludes Sid’s multiple myeloma journey part 1 “the beginning”, part 1 of 6.
It has been an interesting exercise revisiting my diaries and thoughts and sharing them on this blog. What a life changing journey it has been.
There have been 40 postings in part 1, here are 18 of the posting highlights of my blog part 1, or as Myra says, “The juicy bits”. The remainder of the postings can be found in the labels section on the left of my blog.
Click on the red title links to go to the posting highlighted below.
Diagnose
Summary June 2001 to January 2009
A chronological reading of my myeloma journey over that time all in one place made me realise myeloma is not a simple illness, it keeps coming. The goal is to limit its progress.
Pre diagnose
My condition before diagnose. I should have been less optimistic and listened to others.
Emotions
You have cancer
How I coped when I was told, “Sid, you have multiple myeloma. It’s a cancer of the blood. YOU HAVE CANCER”.
Confronting death from myeloma
Myeloma, a cancer that has no cure. How I confronted death.
Myeloma anger
Why me? I was angry that this cancer invaded my body, an unwelcome intruder.
I had to express and release my anger.
Inspiration
Decision made to be a myeloma survivor
I quickly came to the conclusion that I wanted to be a myeloma survivor, there was no other option. This was the beginning of my way forward.
Elizabeth
An inspiration, the first myeloma survivor I met and she had been living with myeloma for 14 years.
Survival tools
Myeloma support group
My lifeline, being an active member of a myeloma support group has assisted me in becoming a myeloma survivor.
Team Sid, a way forward
As part of my way forward to myeloma survival I created “Team Sid”, a network of help and support for medical, emotional and logistical reasons.
Positive affirmations
A survival tool to give me inspiration. “If I can say it, I can do it.”
A positive attitude to survive myeloma
“Success is a by product of a positive attitude”. Another survivor tool.
Treatment
Myeloma bone pain
My worst aspect of myeloma, bone pain, it hurts. Oh the relief when it went away.
Morphine for myeloma bone pain
Pain relief, how I used it, withdrawal symptoms.
My VAD treatment for myeloma
Summary of my initial treatment VAD.
Bisphosphonates for myeloma
A summary of the bisphosphonate Aredia that I have monthly to treat my bones.
Dexamethasone for myeloma, side effects
Dexamethasone, the steroid that I have used. My seek and destroy missile and the side effects it has given me.
Humour
There’s a rat eating my hand
Cancer humour, an amusing story that happened to me. Even in ill health and adversity we must remember and enjoy our humorous moments.
Urine sample for myeloma, no worries
The humour behind trying to pass a reluctant urine sample. It was all my mother’s fault.
Hot news. Join me on Sid’s multiple myeloma journey, part 2 “The Transplant” starting next week.
It has been an interesting exercise revisiting my diaries and thoughts and sharing them on this blog. What a life changing journey it has been.
There have been 40 postings in part 1, here are 18 of the posting highlights of my blog part 1, or as Myra says, “The juicy bits”. The remainder of the postings can be found in the labels section on the left of my blog.
Click on the red title links to go to the posting highlighted below.
Diagnose
Summary June 2001 to January 2009
A chronological reading of my myeloma journey over that time all in one place made me realise myeloma is not a simple illness, it keeps coming. The goal is to limit its progress.
Pre diagnose
My condition before diagnose. I should have been less optimistic and listened to others.
Emotions
You have cancer
How I coped when I was told, “Sid, you have multiple myeloma. It’s a cancer of the blood. YOU HAVE CANCER”.
Confronting death from myeloma
Myeloma, a cancer that has no cure. How I confronted death.
Myeloma anger
Why me? I was angry that this cancer invaded my body, an unwelcome intruder.
I had to express and release my anger.
Inspiration
Decision made to be a myeloma survivor
I quickly came to the conclusion that I wanted to be a myeloma survivor, there was no other option. This was the beginning of my way forward.
Elizabeth
An inspiration, the first myeloma survivor I met and she had been living with myeloma for 14 years.
Survival tools
Myeloma support group
My lifeline, being an active member of a myeloma support group has assisted me in becoming a myeloma survivor.
Team Sid, a way forward
As part of my way forward to myeloma survival I created “Team Sid”, a network of help and support for medical, emotional and logistical reasons.
Positive affirmations
A survival tool to give me inspiration. “If I can say it, I can do it.”
A positive attitude to survive myeloma
“Success is a by product of a positive attitude”. Another survivor tool.
Treatment
Myeloma bone pain
My worst aspect of myeloma, bone pain, it hurts. Oh the relief when it went away.
Morphine for myeloma bone pain
Pain relief, how I used it, withdrawal symptoms.
My VAD treatment for myeloma
Summary of my initial treatment VAD.
Bisphosphonates for myeloma
A summary of the bisphosphonate Aredia that I have monthly to treat my bones.
Dexamethasone for myeloma, side effects
Dexamethasone, the steroid that I have used. My seek and destroy missile and the side effects it has given me.
Humour
There’s a rat eating my hand
Cancer humour, an amusing story that happened to me. Even in ill health and adversity we must remember and enjoy our humorous moments.
Urine sample for myeloma, no worries
The humour behind trying to pass a reluctant urine sample. It was all my mother’s fault.
Hot news. Join me on Sid’s multiple myeloma journey, part 2 “The Transplant” starting next week.
Thursday, June 25, 2009
Myeloma anger
People advised me to expect anger and an emotional roller coaster as I came to grips with having cancer (myeloma) and having to deal with some treatment side effects especially the steroid Dexamethasone.
The anger was there. Why me, what have I done wrong, I don’t have time for this, my dreams are shattered, I have so much to achieve, and my plans for the future have been destroyed.
Dexamethasone mood swings up and down, go away I don’t need you, come back I do need you, I feel great, I feel rotten, where is my head space today? Just put a bucket over my head and leave me alone. What a roller coaster ride.
I was determined not to let any anger or frustration explode into a verbal tirade or abuse of others. A philosophy of my life is zero tolerance of abuse in any form. This I achieve by neither giving or receiving abuse. Treat others as I want them to treat me. That was going to be challenged. How could I overcome it?
There had to be a safety valve, several safety valves. One of mine was watching sport on TV. A favourite pastime that was taken to a higher level of participation. I let loose on any sport any time. When my teams were playing my commentary and comments got louder and louder. A good release for me.
Talking to others by phone or in person helped. I found some good friends who sat beside me and listened, let me ramble on as I went through the anger process.
Myra played a big role there, listening then giving me her thoughts. There has always been trust and honesty between us. That proved invaluable. Nothing was left out.
Writing has always flowed freely for me. Putting my feelings on paper then throwing it away was easy. A good release however I wish I had kept them.
The urge for anger release by physical action like hitting out was not there, I am not that type of person. With my bones being damaged that could have been dangerous.
As my condition improved I found walking became a good release. Lots of thoughts went through my mind. I enjoyed stretching my physical boundaries especially on the hills leaving me a little empty.
I knew the anger would come to an end; it was a process I had to go through.
It was part of my healing.
The anger was there. Why me, what have I done wrong, I don’t have time for this, my dreams are shattered, I have so much to achieve, and my plans for the future have been destroyed.
Dexamethasone mood swings up and down, go away I don’t need you, come back I do need you, I feel great, I feel rotten, where is my head space today? Just put a bucket over my head and leave me alone. What a roller coaster ride.
I was determined not to let any anger or frustration explode into a verbal tirade or abuse of others. A philosophy of my life is zero tolerance of abuse in any form. This I achieve by neither giving or receiving abuse. Treat others as I want them to treat me. That was going to be challenged. How could I overcome it?
There had to be a safety valve, several safety valves. One of mine was watching sport on TV. A favourite pastime that was taken to a higher level of participation. I let loose on any sport any time. When my teams were playing my commentary and comments got louder and louder. A good release for me.
Talking to others by phone or in person helped. I found some good friends who sat beside me and listened, let me ramble on as I went through the anger process.
Myra played a big role there, listening then giving me her thoughts. There has always been trust and honesty between us. That proved invaluable. Nothing was left out.
Writing has always flowed freely for me. Putting my feelings on paper then throwing it away was easy. A good release however I wish I had kept them.
The urge for anger release by physical action like hitting out was not there, I am not that type of person. With my bones being damaged that could have been dangerous.
As my condition improved I found walking became a good release. Lots of thoughts went through my mind. I enjoyed stretching my physical boundaries especially on the hills leaving me a little empty.
I knew the anger would come to an end; it was a process I had to go through.
It was part of my healing.
Monday, June 22, 2009
Confronting death from myeloma
Multiple myeloma, a cancer that has no cure, prognosis varies, average 3 to 5 years. (2001)
When I was first diagnosed with myeloma in 2001 it was explained to me that myeloma can be treated successfully slowing down progression. There would be cycles of treatment, plateau stage (remission) and relapse. Eventually I would succumb to the effects of myeloma in some form; pneumonia, kidney failure or bone destruction were mentioned as common causes of death by myeloma.
No cure, no cure, no cure, death, death, death, echoes in my mind.
No cure and ultimately death were issues that I had to deal with. Death is generally a consequence of myeloma.
Initially there was a problem; I could not get my head around the no cure/death issue. Maybe it was part of my denial, the “not me” syndrome.
Aged 53, happily married, fully employed in a challenging job, my life was sweet. Except for deterioration in the previous 6 months I was fit, healthy, felt bullet proof. Death was not an issue I ever considered. Death happened to other people. I was too busy, too happy for death.
There was a problem, I had to get realistic, I could ignore death letting it nag away at me or I could deal with it. I chose to deal with it.
With help from the NZ Cancer Society counselling service I confronted death. Where was death, I could not see it, never had to. Death to me was hiding around a corner of a building. My aim was to walk around the corner, find death, grip it strongly and drag it back with me out into open spaces. There I could confront it, talk to it and ask questions, talk about it, a new experience for me. It took a while, lots of emotion, lots of tears, lots of help.
The process raised questions like: what happens when I die, where do I go after death, somewhere or nowhere, is there life after death, what are my religious beliefs, why me for this illness and death? Am I prepared for death, is my will up to date, are my finances in order? What sort of funeral service do I want, am I to be buried or cremated? And many more questions.
Was I premature in discussing all this in the first few months after diagnose? No, I don’t think so. It cleared the air for me , part of the process of accepting myeloma and allowed me to move forward focussing on survival.
On the question of religious belief. My faith has grown during my illness, changing from living in a Christian like manner to recently becoming a committed Christian. The power of prayer has amazed me. I felt very humble during my difficult times when hearing of the many groups and individuals praying for me, it made a difference, thank you.
When I was first diagnosed with myeloma in 2001 it was explained to me that myeloma can be treated successfully slowing down progression. There would be cycles of treatment, plateau stage (remission) and relapse. Eventually I would succumb to the effects of myeloma in some form; pneumonia, kidney failure or bone destruction were mentioned as common causes of death by myeloma.
No cure, no cure, no cure, death, death, death, echoes in my mind.
No cure and ultimately death were issues that I had to deal with. Death is generally a consequence of myeloma.
Initially there was a problem; I could not get my head around the no cure/death issue. Maybe it was part of my denial, the “not me” syndrome.
Aged 53, happily married, fully employed in a challenging job, my life was sweet. Except for deterioration in the previous 6 months I was fit, healthy, felt bullet proof. Death was not an issue I ever considered. Death happened to other people. I was too busy, too happy for death.
There was a problem, I had to get realistic, I could ignore death letting it nag away at me or I could deal with it. I chose to deal with it.
With help from the NZ Cancer Society counselling service I confronted death. Where was death, I could not see it, never had to. Death to me was hiding around a corner of a building. My aim was to walk around the corner, find death, grip it strongly and drag it back with me out into open spaces. There I could confront it, talk to it and ask questions, talk about it, a new experience for me. It took a while, lots of emotion, lots of tears, lots of help.
The process raised questions like: what happens when I die, where do I go after death, somewhere or nowhere, is there life after death, what are my religious beliefs, why me for this illness and death? Am I prepared for death, is my will up to date, are my finances in order? What sort of funeral service do I want, am I to be buried or cremated? And many more questions.
Was I premature in discussing all this in the first few months after diagnose? No, I don’t think so. It cleared the air for me , part of the process of accepting myeloma and allowed me to move forward focussing on survival.
On the question of religious belief. My faith has grown during my illness, changing from living in a Christian like manner to recently becoming a committed Christian. The power of prayer has amazed me. I felt very humble during my difficult times when hearing of the many groups and individuals praying for me, it made a difference, thank you.
Friday, June 19, 2009
Hey, it's me
Near the end of my VAD treatment I had an interesting experience in a shopping mall.
We had received my latest test results after the third cycle of VAD. Results were positive, IgG was dropping, and I was feeling healthier, less bone pain, so to celebrate we went to the shopping mall for a coffee. One thing I always try to do; celebrate success
As we were about to leave we met acquaintances of Myra, an older couple. A conversation took place as if I did not exist. I was ignored, the invisible man, being talked around. Sid was “he or him” cancer was “it”. They had a problem, probably a generation thing, unable to face a person with cancer. That C word again.
“Hey it’s me, I’m here, look at me” I said. Eye contact was still avoided.
Stuff them, that’s their hang up.
All I ask is stand by me, stand next to me and treat me as normal. My physical appearance may have changed during treatment, yes I do have cancer but I am living with cancer not dying from cancer. I am still me. I need your support.
It was with great restraint that I avoided giving them a single digit salute. (My mum taught me to respect older people).
What I did learn was involve myself in conversation more. From the beginning make eye contact, smile and ask if they want to listen.
We had received my latest test results after the third cycle of VAD. Results were positive, IgG was dropping, and I was feeling healthier, less bone pain, so to celebrate we went to the shopping mall for a coffee. One thing I always try to do; celebrate success
As we were about to leave we met acquaintances of Myra, an older couple. A conversation took place as if I did not exist. I was ignored, the invisible man, being talked around. Sid was “he or him” cancer was “it”. They had a problem, probably a generation thing, unable to face a person with cancer. That C word again.
“Hey it’s me, I’m here, look at me” I said. Eye contact was still avoided.
Stuff them, that’s their hang up.
All I ask is stand by me, stand next to me and treat me as normal. My physical appearance may have changed during treatment, yes I do have cancer but I am living with cancer not dying from cancer. I am still me. I need your support.
It was with great restraint that I avoided giving them a single digit salute. (My mum taught me to respect older people).
What I did learn was involve myself in conversation more. From the beginning make eye contact, smile and ask if they want to listen.
Wednesday, June 17, 2009
Dexamethasone for myeloma, side effects
Dexamethasone is a synthetic adrenocortial steroid. Adrenocortial steroids are also known as glucocorticosteroids or corticosteroids. Big words you don’t want to pronounce while eating breakfast cereal. If you want to know more do a Google search.
When used in the treatment of myeloma dexamethasone can trigger the destruction of myeloma cells. More information from IMF here: Source
I was given Dexamethasone for VAD cycles one and three on days 2 to 5, 9 to 12, and 17 to 20, taken by tablet (40mg).
Dexamethasone has many side effects. Side effects that I suffered were sleep disturbance, verbal aggression, mood swings and some minor effects.
Sleep disturbance: I would go to sleep in the evening for about 30 minutes then wake up wide awake ready to take on the world. From trial and error there wasn’t much point in going back to bed for at least 4 to 5 hours. If I was lucky and did go to sleep longer, sleep would only last 4 hours when I would wake early morning wide awake really buzzing, no more sleep.
As advised by my doctor I was taking the dexamethasone at breakfast, it didn’t seem to help the sleep disturbance.
To take advantage of my extra time awake I would get out of bed so as not to disturb Myra, get warm and comfortable to read, watch TV, listen to music or the radio or get on the computer. When my bone pain reduced I found walking the floor helped by making me feel tired.
The use of a sleeping pill did help.
Verbal aggression: This was interesting. Normally I am laid back, an introvert, keep calm, not prone to verbal outbursts. Myra pointed out to me that I was becoming very opinionated, loud and talking aggressively. For example, when driving any other driver was fair game. So many *#@$** wankers who got their *#@$** license from K-mart. My driving wasn’t aggressive, my comments were. Any politician on TV copped a gob full, right or wrong.
Once I realised what was happening I tried to tone it down but still had to get stress release so I still made comments while driving. My main verbal stress release was watching sport on TV, my favourite pastime. I let it all hang out, I loved it. Any one walking by must have thought we were having a domestic.
I called my verbal aggression “the other Sid”.
An important challenge for me was to acknowledge it, not let it impact on others or use it as an excuse for personal abuse. That’s why the stress release was important.
Mood swings: Not too bad, just feeling good then within 10 minutes feeling down. The sudden changes surprised me. This fluctuated during day and night. Sometimes I would mood down and stay down all day. It was never anything too deep, constant down or depression like others have told me, just up and down, up and down
Tearfulness was there, tears flowed spontaneously for reason or no reason even when feeling normal.
I kept the medical team informed but decided not to use any helpful medication that was offered unless it became worse, it didn’t.
Minor effects: During the week I was taking dexamethasone I suffered bouts of hiccups, some times for 2 hours.
During the third VAD cycle (second dexamethasone treatment) I experienced an outbreak of acne type blemishes on the face and neck which was thought to be dexamethasone related and treated with a prescription ointment and eventually cleared.
When used in the treatment of myeloma dexamethasone can trigger the destruction of myeloma cells. More information from IMF here: Source
I was given Dexamethasone for VAD cycles one and three on days 2 to 5, 9 to 12, and 17 to 20, taken by tablet (40mg).
Dexamethasone has many side effects. Side effects that I suffered were sleep disturbance, verbal aggression, mood swings and some minor effects.
Sleep disturbance: I would go to sleep in the evening for about 30 minutes then wake up wide awake ready to take on the world. From trial and error there wasn’t much point in going back to bed for at least 4 to 5 hours. If I was lucky and did go to sleep longer, sleep would only last 4 hours when I would wake early morning wide awake really buzzing, no more sleep.
As advised by my doctor I was taking the dexamethasone at breakfast, it didn’t seem to help the sleep disturbance.
To take advantage of my extra time awake I would get out of bed so as not to disturb Myra, get warm and comfortable to read, watch TV, listen to music or the radio or get on the computer. When my bone pain reduced I found walking the floor helped by making me feel tired.
The use of a sleeping pill did help.
Verbal aggression: This was interesting. Normally I am laid back, an introvert, keep calm, not prone to verbal outbursts. Myra pointed out to me that I was becoming very opinionated, loud and talking aggressively. For example, when driving any other driver was fair game. So many *#@$** wankers who got their *#@$** license from K-mart. My driving wasn’t aggressive, my comments were. Any politician on TV copped a gob full, right or wrong.
Once I realised what was happening I tried to tone it down but still had to get stress release so I still made comments while driving. My main verbal stress release was watching sport on TV, my favourite pastime. I let it all hang out, I loved it. Any one walking by must have thought we were having a domestic.
I called my verbal aggression “the other Sid”.
An important challenge for me was to acknowledge it, not let it impact on others or use it as an excuse for personal abuse. That’s why the stress release was important.
Mood swings: Not too bad, just feeling good then within 10 minutes feeling down. The sudden changes surprised me. This fluctuated during day and night. Sometimes I would mood down and stay down all day. It was never anything too deep, constant down or depression like others have told me, just up and down, up and down
Tearfulness was there, tears flowed spontaneously for reason or no reason even when feeling normal.
I kept the medical team informed but decided not to use any helpful medication that was offered unless it became worse, it didn’t.
Minor effects: During the week I was taking dexamethasone I suffered bouts of hiccups, some times for 2 hours.
During the third VAD cycle (second dexamethasone treatment) I experienced an outbreak of acne type blemishes on the face and neck which was thought to be dexamethasone related and treated with a prescription ointment and eventually cleared.
Monday, June 15, 2009
Bisphosphonates for myeloma
Bisphosphonates are drugs used to prevent or treat high calcium levels in myeloma.
Bisphosphonates work by “coating” the surface of your bones protecting them from the damaging effect of myeloma cells. By preventing bone destruction these drugs also help to reduce bone pain, the risk of bone fractures, hypercalcaemia (excess calcium in the blood) and strengthen the bones. Relief from bone pain improves physical activity which promotes bone strength and healing.
Bisphosphonates usually have minimal side effects; however they can cause the blood calcium to drop below normal levels causing muscle cramps or spasms. Occasionally patients may develop a fever after an intravenous infusion of a bisphosphonate. Other rare side effects include kidney damage and damage to the jaw bone (osteonecrosis of the jaw). Your Doctor may recommend a dental check up.
In New Zealand we use the bisphosphonate (pamidronate Aredia) given intravenously over 2 hours. It is available orally but not in New Zealand.
I was given Aredia monthly until my first stem cell transplant then resumed it about four months later.
The first time I received Aredia I suffered for several days the side effects of cold chills and flu like symptoms. This was also repeated at the second infusion a month later though not as bad. On the third infusion I only suffered minor flu like symptoms over night, on subsequent infusions nothing. Apparently if the infusion time is extended to 3 hours less side effects are experienced. My side effect symptoms were controlled by panadol.
Bisphosphonates work by “coating” the surface of your bones protecting them from the damaging effect of myeloma cells. By preventing bone destruction these drugs also help to reduce bone pain, the risk of bone fractures, hypercalcaemia (excess calcium in the blood) and strengthen the bones. Relief from bone pain improves physical activity which promotes bone strength and healing.
Bisphosphonates usually have minimal side effects; however they can cause the blood calcium to drop below normal levels causing muscle cramps or spasms. Occasionally patients may develop a fever after an intravenous infusion of a bisphosphonate. Other rare side effects include kidney damage and damage to the jaw bone (osteonecrosis of the jaw). Your Doctor may recommend a dental check up.
In New Zealand we use the bisphosphonate (pamidronate Aredia) given intravenously over 2 hours. It is available orally but not in New Zealand.
I was given Aredia monthly until my first stem cell transplant then resumed it about four months later.
The first time I received Aredia I suffered for several days the side effects of cold chills and flu like symptoms. This was also repeated at the second infusion a month later though not as bad. On the third infusion I only suffered minor flu like symptoms over night, on subsequent infusions nothing. Apparently if the infusion time is extended to 3 hours less side effects are experienced. My side effect symptoms were controlled by panadol.
Saturday, June 13, 2009
VAD for myeloma, end of fourth cycle
A summary of the end of my VAD cycle 4 (final cycle) Monday 8th October 2001, treatment for myeloma.
Another successful VAD and Aredia cycle.
IgG at diagnose = 80 g/L
IgG at end of cycle 1 = 26.4 g/L
IgG at end of cycle 2 = 25.9 g/L
IgG at end of cycle 3 = 21.6 g/L
IgG at end of cycle 4 = 17.1 g/L
All other test results were normal.
There was no dexamethasone on this cycle.
Allopurin was stopped on day 9.
Again I suffered chemo induced nausea for 7 days with its associated disinterest in food. On day 8 I stopped the Maxolon and over the next few days my appetite increased.
During week 2 I developed a rash on my chest which cleared after 10 days. It was a fungal infection.
Bone pain had reduced considerably with no significant hot spots. My pain relief was Kapanol 10 morning and evening plus panadol every 4 hours. Kapanol will be stopped next month. Liquid morphine for break through was rarely used. I woke a few times at 5am with back pain that disappeared after panadol and a bit of moving around.
Physically I was much better, walking briskly, moving well and started gardening this month including light digging with a shovel.
A bone marrow biopsy was performed at the end of cycle 4.
Plasma 7% (June 12%)
Trephine 5% (June 10%)
At the end of cycle 4 I was considered to be in a state of stable partial remission and a discussion took place on what happens next, mainly the benefits of an autologous stem cell transplant. During VAD cycle 4 I had researched an ASCT and agreed for this to proceed.
Looking back over the 4 cycles, the first 2 were difficult with heavy nausea from chemo, continual bone pain and having to come to grips with cancer and emotions. The last 2 cycles were easier with nausea not so difficult and bone pain reducing. Dexamethasone side effects were a new experience especially the mood swings. Once I new what was happening I could cope.
I had put in place my way forward philosophy and "Team Sid", both important aspects of my myeloma survival.
My treatment option of VAD was in 2001. Treatment options for newly diagnosed myeloma now (2009) have changed.
Glossary.
Allopurin: A drug used to prevent high levels of uric acid in the body, including the increase caused by certain cancer medications.
Maxolon: Used for the treatment of nausea and vomiting associated with chemotherapy. Up to four tablets per day.
Another successful VAD and Aredia cycle.
IgG at diagnose = 80 g/L
IgG at end of cycle 1 = 26.4 g/L
IgG at end of cycle 2 = 25.9 g/L
IgG at end of cycle 3 = 21.6 g/L
IgG at end of cycle 4 = 17.1 g/L
All other test results were normal.
There was no dexamethasone on this cycle.
Allopurin was stopped on day 9.
Again I suffered chemo induced nausea for 7 days with its associated disinterest in food. On day 8 I stopped the Maxolon and over the next few days my appetite increased.
During week 2 I developed a rash on my chest which cleared after 10 days. It was a fungal infection.
Bone pain had reduced considerably with no significant hot spots. My pain relief was Kapanol 10 morning and evening plus panadol every 4 hours. Kapanol will be stopped next month. Liquid morphine for break through was rarely used. I woke a few times at 5am with back pain that disappeared after panadol and a bit of moving around.
Physically I was much better, walking briskly, moving well and started gardening this month including light digging with a shovel.
A bone marrow biopsy was performed at the end of cycle 4.
Plasma 7% (June 12%)
Trephine 5% (June 10%)
At the end of cycle 4 I was considered to be in a state of stable partial remission and a discussion took place on what happens next, mainly the benefits of an autologous stem cell transplant. During VAD cycle 4 I had researched an ASCT and agreed for this to proceed.
Looking back over the 4 cycles, the first 2 were difficult with heavy nausea from chemo, continual bone pain and having to come to grips with cancer and emotions. The last 2 cycles were easier with nausea not so difficult and bone pain reducing. Dexamethasone side effects were a new experience especially the mood swings. Once I new what was happening I could cope.
I had put in place my way forward philosophy and "Team Sid", both important aspects of my myeloma survival.
My treatment option of VAD was in 2001. Treatment options for newly diagnosed myeloma now (2009) have changed.
Glossary.
Allopurin: A drug used to prevent high levels of uric acid in the body, including the increase caused by certain cancer medications.
Maxolon: Used for the treatment of nausea and vomiting associated with chemotherapy. Up to four tablets per day.
Thursday, June 11, 2009
VAD for myeloma, end of third cycle
A summary of the end of my VAD cycle 3 Monday 10th September 2001, treatment for myeloma.
My response to VAD and Aredia after the third 28 day VAD cycle was again excellent.
IgG at diagnose = 80 g/L
IgG at end of cycle 1 = 26.4 g/L
IgG at end of cycle 2 = 25.9 g/L
IgG at end of cycle 3 = 21.6 g/L
All other test results were normal.
Dexamethasone was reintroduced in this cycle causing sleep disturbance, mood swings and bouts of hiccups. I had to use sleeping pills to get good sleep. Experienced an outbreak of acne type blemishes on the face and neck which was thought to be dexamethasone related and treated with a prescription ointment and eventually cleared.
Hair loss has thankfully stopped but dry skin and lips continued though not as bad as cycles 1 and 2.
Nausea was experienced for the first 10 days again reducing my appetite so I resumed the Maxolon. After 11 days nausea was gone, Maxolon stopped and the appetite was coming back again.
Bone pain was definitely reduced, I was more flexible, walking briskly and feeling physically stronger. The big news was I could now sleep on my sides, a big step forward for me. My slow release morphine Kapanol 20 was reduced to Kapanol 10 after week 2. For two evenings after stopping Kapanol I experienced restless legs lasting an hour while trying to sleep, a morphine withdrawal symptom. Two panadol every four hours was still continued and I only had to use the liquid morphine for break through pain 5 times this cycle.
There was some constipation during the first two weeks overcome by using Coloxyl laxative.
Work was increased to 6 hours per day.
Life was starting to get back to normal again.
My response to VAD and Aredia after the third 28 day VAD cycle was again excellent.
IgG at diagnose = 80 g/L
IgG at end of cycle 1 = 26.4 g/L
IgG at end of cycle 2 = 25.9 g/L
IgG at end of cycle 3 = 21.6 g/L
All other test results were normal.
Dexamethasone was reintroduced in this cycle causing sleep disturbance, mood swings and bouts of hiccups. I had to use sleeping pills to get good sleep. Experienced an outbreak of acne type blemishes on the face and neck which was thought to be dexamethasone related and treated with a prescription ointment and eventually cleared.
Hair loss has thankfully stopped but dry skin and lips continued though not as bad as cycles 1 and 2.
Nausea was experienced for the first 10 days again reducing my appetite so I resumed the Maxolon. After 11 days nausea was gone, Maxolon stopped and the appetite was coming back again.
Bone pain was definitely reduced, I was more flexible, walking briskly and feeling physically stronger. The big news was I could now sleep on my sides, a big step forward for me. My slow release morphine Kapanol 20 was reduced to Kapanol 10 after week 2. For two evenings after stopping Kapanol I experienced restless legs lasting an hour while trying to sleep, a morphine withdrawal symptom. Two panadol every four hours was still continued and I only had to use the liquid morphine for break through pain 5 times this cycle.
There was some constipation during the first two weeks overcome by using Coloxyl laxative.
Work was increased to 6 hours per day.
Life was starting to get back to normal again.
Tuesday, June 9, 2009
VAD for myeloma, end of second cycle
A summary of the end of my VAD cycle 2 Monday 13th August 2001, treatment for myeloma.
My response to VAD and Aredia after the second 28 day VAD cycle was again excellent.
IgG at diagnose = 80 g/L
IgG at end of cycle 1 = 26.4 g/L
IgG at end of cycle 2 = 25.9 g/L
Bence-Jones protein negative, full blood count and other tests normal.
This cycle had no dexamethasone.
My hair loss this cycle was limited to the crown; my beard became patchy so I trimmed the beard back to a No1.
Nausea was experienced over the first 8 days then tapered off so I stopped the Maxolon on day 9. Following that I only had to use it on 3 other isolated days which was reflected in my appetite returning for the remaining 3 weeks.
Eyesight deterioration, dry skin and dry lips were still present though no worse than cycle 1. There were still no mouth or throat issues from chemo.
During the last 2 weeks of cycle 2 there was a noticeable reduction in bone pain. (6 to 8 weeks after initial VAD and Aredia). I was becoming more flexible and less restricted by bone pain. This was noticed when getting in and out of the car, being able to reach out and up and pick items off the floor. The liquid morphine for break through pain was used less this cycle. I was still using Kaponal 20 morning and evening plus panadol during the day. Pain was still present, over the final 2 weeks not as intense.
I had returned to work part time midway through the first cycle for 4 hours per day increasing this to 5 hours per day at the end of cycle 2. My occupation is a structural draughtsperson using CAD on a computer in an Engineering design office so there is no physical involvement that would be restricted by myeloma. Every second day I rested for 30 to 60 minutes on arriving home from work, just lying on the bed dozing or sleeping and resting my body.
Night time sleep was much better this cycle without the dexamethasone. I never had to use a sleeping pill at all. I still could only sleep on my back, the restriction there was rib pain.
I developed the first symptoms and signs of a hernia this cycle, not thought to be myeloma related.
My emotions were still up and down and it didn’t take too much for the tears to flow.
This cycle I resumed my walking for exercise, 30 minutes each day when I could and longer in the weekends, also resumed minor stretching.
My response to VAD and Aredia after the second 28 day VAD cycle was again excellent.
IgG at diagnose = 80 g/L
IgG at end of cycle 1 = 26.4 g/L
IgG at end of cycle 2 = 25.9 g/L
Bence-Jones protein negative, full blood count and other tests normal.
This cycle had no dexamethasone.
My hair loss this cycle was limited to the crown; my beard became patchy so I trimmed the beard back to a No1.
Nausea was experienced over the first 8 days then tapered off so I stopped the Maxolon on day 9. Following that I only had to use it on 3 other isolated days which was reflected in my appetite returning for the remaining 3 weeks.
Eyesight deterioration, dry skin and dry lips were still present though no worse than cycle 1. There were still no mouth or throat issues from chemo.
During the last 2 weeks of cycle 2 there was a noticeable reduction in bone pain. (6 to 8 weeks after initial VAD and Aredia). I was becoming more flexible and less restricted by bone pain. This was noticed when getting in and out of the car, being able to reach out and up and pick items off the floor. The liquid morphine for break through pain was used less this cycle. I was still using Kaponal 20 morning and evening plus panadol during the day. Pain was still present, over the final 2 weeks not as intense.
I had returned to work part time midway through the first cycle for 4 hours per day increasing this to 5 hours per day at the end of cycle 2. My occupation is a structural draughtsperson using CAD on a computer in an Engineering design office so there is no physical involvement that would be restricted by myeloma. Every second day I rested for 30 to 60 minutes on arriving home from work, just lying on the bed dozing or sleeping and resting my body.
Night time sleep was much better this cycle without the dexamethasone. I never had to use a sleeping pill at all. I still could only sleep on my back, the restriction there was rib pain.
I developed the first symptoms and signs of a hernia this cycle, not thought to be myeloma related.
My emotions were still up and down and it didn’t take too much for the tears to flow.
This cycle I resumed my walking for exercise, 30 minutes each day when I could and longer in the weekends, also resumed minor stretching.
Sunday, June 7, 2009
VAD for myeloma, end of first cycle
A summary of the end of my VAD cycle 1 Monday 16th July 2001, treatment for myeloma.
My response to VAD and Aredia after the first 28 day cycle was excellent. IgG reduced from 80g/L to 26.4 g/L.
Reaction to VAD wasn’t too bad, the mouth and throat were OK, minor hair loss so I had it trimmed back to a No 2 not realising how much heat loss it would give. It was winter so I wore a beanie or cap all the time even in bed.
There was a minor deterioration in eyesight.
Had some constipation so used the Coloxyl laxative successfully.
I suffered hiccups for about 2 hours on 3 days early in the cycle.
Towards the end of the first cycle I started to suffer dry skin and lips so applied moisturiser and lip balm.
It was a struggle to get used to drinking 2L of fluid a day so I used a 500ml water bottle as a guide.
Concentration was down, probably the first indication of chemo brain.
Nausea was an issue very early on, so I used Maxolon all the time and experimented with ginger products. Both helped especially Maxolon but it never went away making eating a problem. Small helpings meant my food intake though reduced was maintained.
What surprised me was the number of pills I had to take in the morning. The maximum was 16 which I took in groups of 4, a new experience and a struggle for me.
Bone pain did not change, the pain relief (morphine and panadol) served its purpose well reducing a lot of pain. Still had to sleep on my back, the ribs and collapsed vertebrae were always a constant dull pain. There were sudden pockets of bone pain elsewhere that liquid morphine was used as break through pain relief.
Dexamethasone made me verbally aggressive, more abrupt and expressive. Mood swings from Dexamethasone were present occasionally during the first cycle. Sleep disturbance was a big issue so I had to resort to sleeping pills.
My response to VAD and Aredia after the first 28 day cycle was excellent. IgG reduced from 80g/L to 26.4 g/L.
Reaction to VAD wasn’t too bad, the mouth and throat were OK, minor hair loss so I had it trimmed back to a No 2 not realising how much heat loss it would give. It was winter so I wore a beanie or cap all the time even in bed.
There was a minor deterioration in eyesight.
Had some constipation so used the Coloxyl laxative successfully.
I suffered hiccups for about 2 hours on 3 days early in the cycle.
Towards the end of the first cycle I started to suffer dry skin and lips so applied moisturiser and lip balm.
It was a struggle to get used to drinking 2L of fluid a day so I used a 500ml water bottle as a guide.
Concentration was down, probably the first indication of chemo brain.
Nausea was an issue very early on, so I used Maxolon all the time and experimented with ginger products. Both helped especially Maxolon but it never went away making eating a problem. Small helpings meant my food intake though reduced was maintained.
What surprised me was the number of pills I had to take in the morning. The maximum was 16 which I took in groups of 4, a new experience and a struggle for me.
Bone pain did not change, the pain relief (morphine and panadol) served its purpose well reducing a lot of pain. Still had to sleep on my back, the ribs and collapsed vertebrae were always a constant dull pain. There were sudden pockets of bone pain elsewhere that liquid morphine was used as break through pain relief.
Dexamethasone made me verbally aggressive, more abrupt and expressive. Mood swings from Dexamethasone were present occasionally during the first cycle. Sleep disturbance was a big issue so I had to resort to sleeping pills.
Thursday, June 4, 2009
My VAD treatment for myeloma
My initial treatment for myeloma in 2001 was VAD (Vincristine, Adriamycin, and Dexamethasone) and a bisphosphonate (pamidronate, Aredia). That was the conventional treatment for myeloma in New Zealand at that time especially if one was to continue on to a stem cell transplant. I had four cycles of VAD each over 28 days.
VINCRISTINE:
Vincristine is a chemotherapy drug used in combination with other drugs to treat myeloma by blocking cell growth by stopping cell division.
I was given 0.4mg of Vincristine intravenously on days 1 to 4 of each VAD 28 day cycle.
ADRIAMYCIN: Now called Doxorubicin
Adriamycin is a chemotherapy drug that is used to treat myeloma by bonding to the cancer cells DNA blocking an important enzyme and stopping divide and grow.
I was given 16mg of Adriamycin intravenously on days 1 to 4 of each VAD 28 day cycle.
DEXAMETHASONE:
Dexamethasone is a synthetic adrenocartia steroid. When used in the treatment of myeloma it can trigger the destruction of myeloma cells. I was given Dexamethasone for VAD cycles one and three on days 2 to 5, 9 to 12, and 17 to 20, taken by tablet (40mg).
Dexamethasone side effects experienced by me were sleep disturbance, verbal aggression and mood swings, all to be explained in a future posting.
BISPHOSPHONATE: Pamidronate, Aredia.
In myeloma bisphosphonate can delay and reduce the number of skeletal events and reduce bone pain. I was given 90mg of Aredia intravenously over two hours once a month. In the evening of the first infusion I suffered from a drop in body temperature, cold flushes and flue like symptoms. This continued for four days though reducing in severity daily. On subsequent monthly infusions I had no side effects. When discussing this with the hospital I was told this was a rare reaction and the remedy would have been to increase the infusion time to three hours.
In addition I was given other medication to overcome the side effects of VAD.
Allopurin: A drug used to prevent high levels of uric acid in the body, including the increase caused by certain cancer medications. High levels of uric acid may cause gout attacks, kidney stones or renal failure. 30mg tablets each morning.
Bactrim: Used as an antibiotic. 1 tablet each morning and afternoon.
Maxolon: Used for the treatment of nausea and vomiting associated with chemotherapy. Up to four tablets per day.
Zontac: Reduces the amount of acid in my stomach. Heals and prevents ulcers. 1 tablet morning and afternoon.
Tempazepan: A sleeping pill available to assist any anticipated Dexamethasone induced or any other sleep problems.
Chlorhexidine: mouthwash to be used morning and night to prevent mucositis; the inflammation of the lining of the mouth and throat which often occurs after high dose chemotherapy. From chemo day one I maintained a rigid commitment to following the recommended teeth and mouth wash process even when I did not feel like it. No mouth issues arose.
Nilstat: an oral suspension advanced mouthwash to be used only if any mouth issues deteriorate. It was never used.
Coloxyl laxative. 2 per day if required to overcome constipation. It was used occasionally.
VINCRISTINE:
Vincristine is a chemotherapy drug used in combination with other drugs to treat myeloma by blocking cell growth by stopping cell division.
I was given 0.4mg of Vincristine intravenously on days 1 to 4 of each VAD 28 day cycle.
ADRIAMYCIN: Now called Doxorubicin
Adriamycin is a chemotherapy drug that is used to treat myeloma by bonding to the cancer cells DNA blocking an important enzyme and stopping divide and grow.
I was given 16mg of Adriamycin intravenously on days 1 to 4 of each VAD 28 day cycle.
DEXAMETHASONE:
Dexamethasone is a synthetic adrenocartia steroid. When used in the treatment of myeloma it can trigger the destruction of myeloma cells. I was given Dexamethasone for VAD cycles one and three on days 2 to 5, 9 to 12, and 17 to 20, taken by tablet (40mg).
Dexamethasone side effects experienced by me were sleep disturbance, verbal aggression and mood swings, all to be explained in a future posting.
BISPHOSPHONATE: Pamidronate, Aredia.
In myeloma bisphosphonate can delay and reduce the number of skeletal events and reduce bone pain. I was given 90mg of Aredia intravenously over two hours once a month. In the evening of the first infusion I suffered from a drop in body temperature, cold flushes and flue like symptoms. This continued for four days though reducing in severity daily. On subsequent monthly infusions I had no side effects. When discussing this with the hospital I was told this was a rare reaction and the remedy would have been to increase the infusion time to three hours.
In addition I was given other medication to overcome the side effects of VAD.
Allopurin: A drug used to prevent high levels of uric acid in the body, including the increase caused by certain cancer medications. High levels of uric acid may cause gout attacks, kidney stones or renal failure. 30mg tablets each morning.
Bactrim: Used as an antibiotic. 1 tablet each morning and afternoon.
Maxolon: Used for the treatment of nausea and vomiting associated with chemotherapy. Up to four tablets per day.
Zontac: Reduces the amount of acid in my stomach. Heals and prevents ulcers. 1 tablet morning and afternoon.
Tempazepan: A sleeping pill available to assist any anticipated Dexamethasone induced or any other sleep problems.
Chlorhexidine: mouthwash to be used morning and night to prevent mucositis; the inflammation of the lining of the mouth and throat which often occurs after high dose chemotherapy. From chemo day one I maintained a rigid commitment to following the recommended teeth and mouth wash process even when I did not feel like it. No mouth issues arose.
Nilstat: an oral suspension advanced mouthwash to be used only if any mouth issues deteriorate. It was never used.
Coloxyl laxative. 2 per day if required to overcome constipation. It was used occasionally.
Tuesday, May 26, 2009
Morphine for myeloma bone pain
When my GP told me I had multiple myeloma my pain relief was increased to morphine. The pain I was suffering was myeloma bone pain; multiple lesions, rib fractures and compressed vertebrae.
I took liquid morphine starting at 5mls every 6 hours. It was soon apparent this was inadequate so I increased the dosage to 10mls and reduced the time interval to 4 hours to give me much better pain relief. For five days I recorded every dosage and time for my GP to determine the dosage of a morphine slow release capsule.
On Tuesday 5th June 2001 I changed from liquid morphine to a slow release morphine capsule. It was Kapanol 20, the 20 being 20 mg. Kapanol 20 was effective for 12 hours so I took one pill on awaking and another 12 hours later. Kapanol was complimented with panadol.
Liquid morphine was still available for any break through pain. Initially I took some liquid morphine at the same time as the morning Kapanol to help me get going pain free.
Liquid morphine had a sweet taste to me, a bit like apple cider, was rapid acting, pain relief was felt after 2 minutes and was effective for 4 hours.
Side effects for me were dry mouth and minor constipation. The dry mouth was overcome by drinking liquid during the day. At night I slept with a drink bottle close by to sip and moisten my mouth. My lips became dry as well so I used a lip balm, my introduction to regular use of “lippy”. Myra claimed the dry mouth along with sleeping on my back caused me to snore, I never heard it. Constipation was manageable with Kiwifruit (Kiwigold, it’s sweeter) but became worse when I was on VAD.
At the end of August 2001, 3 months after starting morphine, I no longer required liquid morphine so reduced the Kapanol 20 to Kapanol 10. That was at the end of my second VAD cycle. I was still taking panadol.
For two evenings after the reduction I experienced restless legs while trying to sleep a classic morphine withdrawal symptom.
On 15th November 2001 I stopped the Kapanol completely. Restless legs were again experienced for 2 evenings and my bowels were loose for 2 days.
Glossary.
Morphine: A drug extracted from opium used in medicine as an anaesthetic and sedative.
I took liquid morphine starting at 5mls every 6 hours. It was soon apparent this was inadequate so I increased the dosage to 10mls and reduced the time interval to 4 hours to give me much better pain relief. For five days I recorded every dosage and time for my GP to determine the dosage of a morphine slow release capsule.
On Tuesday 5th June 2001 I changed from liquid morphine to a slow release morphine capsule. It was Kapanol 20, the 20 being 20 mg. Kapanol 20 was effective for 12 hours so I took one pill on awaking and another 12 hours later. Kapanol was complimented with panadol.
Liquid morphine was still available for any break through pain. Initially I took some liquid morphine at the same time as the morning Kapanol to help me get going pain free.
Liquid morphine had a sweet taste to me, a bit like apple cider, was rapid acting, pain relief was felt after 2 minutes and was effective for 4 hours.
Side effects for me were dry mouth and minor constipation. The dry mouth was overcome by drinking liquid during the day. At night I slept with a drink bottle close by to sip and moisten my mouth. My lips became dry as well so I used a lip balm, my introduction to regular use of “lippy”. Myra claimed the dry mouth along with sleeping on my back caused me to snore, I never heard it. Constipation was manageable with Kiwifruit (Kiwigold, it’s sweeter) but became worse when I was on VAD.
At the end of August 2001, 3 months after starting morphine, I no longer required liquid morphine so reduced the Kapanol 20 to Kapanol 10. That was at the end of my second VAD cycle. I was still taking panadol.
For two evenings after the reduction I experienced restless legs while trying to sleep a classic morphine withdrawal symptom.
On 15th November 2001 I stopped the Kapanol completely. Restless legs were again experienced for 2 evenings and my bowels were loose for 2 days.
Glossary.
Morphine: A drug extracted from opium used in medicine as an anaesthetic and sedative.
Sunday, May 24, 2009
Myeloma bone pain
My bone pain was typical myeloma bone pain, very painful and never ending.
X-rays showed extensive bone lesions all over, 3 rib fractures, one collapsed and one partially collapsed vertebrae. No wonder I was in pain.
I had great difficulty getting in and out of bed, could only sleep on my back and could barely function. Sneezing and coughing was to be avoided, too painful. Bone lesions in my hips and thighs had me hobbling along.
I knew where all the road pot holes and car park speed humps were, it was too painful to drive over them at speed.
Travelling to and from work was 12km by bus and I learnt when to brace myself to avoid pain. One evening we had a temporary driver who must have been Meatloaf’s brother as he drove like a bat out of hell. That was a painful journey.
The hospital arranged a bed support enabling me to get in and out of bed easier. My wife helped me get dressed and to shower.
My response to treatment of VAD and the bisphosphonate Aredia was excellent and as the bones healed the bone pain reduced. Later I had an autologous stem cell transplant eventually reaching the multiple myeloma plateau stage and no more bone pain.
The biggest relief was to be able to roll over in bed and sleep on my sides and to be able to twist my back when reversing my car to see where I was going. Best of all was to be able to cuddle Myra, squeeze her tight and be free of pain.
When you have myeloma bone pain it never goes away. You take the pain relief, that dulls it down but it’s always there. It can destroy the soul.
Myeloma bone pain hurts, it really, really hurts. It sucks.
X-rays showed extensive bone lesions all over, 3 rib fractures, one collapsed and one partially collapsed vertebrae. No wonder I was in pain.
I had great difficulty getting in and out of bed, could only sleep on my back and could barely function. Sneezing and coughing was to be avoided, too painful. Bone lesions in my hips and thighs had me hobbling along.
I knew where all the road pot holes and car park speed humps were, it was too painful to drive over them at speed.
Travelling to and from work was 12km by bus and I learnt when to brace myself to avoid pain. One evening we had a temporary driver who must have been Meatloaf’s brother as he drove like a bat out of hell. That was a painful journey.
The hospital arranged a bed support enabling me to get in and out of bed easier. My wife helped me get dressed and to shower.
My response to treatment of VAD and the bisphosphonate Aredia was excellent and as the bones healed the bone pain reduced. Later I had an autologous stem cell transplant eventually reaching the multiple myeloma plateau stage and no more bone pain.
The biggest relief was to be able to roll over in bed and sleep on my sides and to be able to twist my back when reversing my car to see where I was going. Best of all was to be able to cuddle Myra, squeeze her tight and be free of pain.
When you have myeloma bone pain it never goes away. You take the pain relief, that dulls it down but it’s always there. It can destroy the soul.
Myeloma bone pain hurts, it really, really hurts. It sucks.
Thursday, May 21, 2009
A positive attitude to survive myeloma
A positive attitude has always been one of my aspirations.
“Success is a by product of a good attitude”.
During my myeloma illness and treatment a goal has been not to give in to self pity, negative thoughts or words. Continue doing what I normally do, to remain optimistic, to maintain a positive attitude.
At the beginning that became a challenge for me. After all myeloma is a cancer that has no cure, a reality that I had to work through. Myeloma had savaged me, I was a sick man. I could not change what had happened but I could influence the future.
Being an optimistic person, taking a proactive stance came natural. Consider the alternate; pessimism = negative (I won’t get better, the myeloma is killing me). Never would I allow myself to be dragged down into the bowels of negativity.
When I developed my “way forward” plan a goal was to create an environment that supported my positive attitude.
My self belief that I would recover to good health again was strong and fundamental. To look forward to a positive outcome, to get back to normal again.
“I will get better”.
“My myeloma will go away”.
“I am a survivor”.
My support team was made to feel welcome; looking after me was going to be a positive experience for them. I embraced them with my positive attitude. My role was to express gratitude, do my home work to be knowledgeable of my illness and the role of others, ask questions, listen, and give feedback. Take ownership of my illness.
Throughout the treatment and recovery process I needed to spend time to prepare and condition myself to be normal again. Maintain my hobbies and interests. Take time out from my illness to refresh my mind. To rejuvenate my positive attitude.
At the beginning of this posting I used the saying “Success is a by product of a good attitude”. Celebrating success is important to me. I grasped every opportunity. Good test results, a reduction in IgG, being able to sleep on my side, being able to shower myself. I used the celebration of success to reward my positive attitude.
“Little achievements, small steps in the long journey”.
A positive attitude helped me never lose my desire for life, my optimism, my dreams, my ability to face a challenge, my belief that I would achieve myeloma plateau stage.
Positive attitude: Expressing certainty in the way a person thinks or behaves, another tool that can be used to survive myeloma.
“Success is a by product of a good attitude”.
During my myeloma illness and treatment a goal has been not to give in to self pity, negative thoughts or words. Continue doing what I normally do, to remain optimistic, to maintain a positive attitude.
At the beginning that became a challenge for me. After all myeloma is a cancer that has no cure, a reality that I had to work through. Myeloma had savaged me, I was a sick man. I could not change what had happened but I could influence the future.
Being an optimistic person, taking a proactive stance came natural. Consider the alternate; pessimism = negative (I won’t get better, the myeloma is killing me). Never would I allow myself to be dragged down into the bowels of negativity.
When I developed my “way forward” plan a goal was to create an environment that supported my positive attitude.
My self belief that I would recover to good health again was strong and fundamental. To look forward to a positive outcome, to get back to normal again.
“I will get better”.
“My myeloma will go away”.
“I am a survivor”.
My support team was made to feel welcome; looking after me was going to be a positive experience for them. I embraced them with my positive attitude. My role was to express gratitude, do my home work to be knowledgeable of my illness and the role of others, ask questions, listen, and give feedback. Take ownership of my illness.
Throughout the treatment and recovery process I needed to spend time to prepare and condition myself to be normal again. Maintain my hobbies and interests. Take time out from my illness to refresh my mind. To rejuvenate my positive attitude.
At the beginning of this posting I used the saying “Success is a by product of a good attitude”. Celebrating success is important to me. I grasped every opportunity. Good test results, a reduction in IgG, being able to sleep on my side, being able to shower myself. I used the celebration of success to reward my positive attitude.
“Little achievements, small steps in the long journey”.
A positive attitude helped me never lose my desire for life, my optimism, my dreams, my ability to face a challenge, my belief that I would achieve myeloma plateau stage.
Positive attitude: Expressing certainty in the way a person thinks or behaves, another tool that can be used to survive myeloma.
Tuesday, May 19, 2009
Positive affirmations
A tool used during my myeloma treatment and recovery has been positive affirmations. Something I have often used throughout my life. Success will come when you impress the subconscious with the conviction you are a success. This is done by making an affirmation which clicks.
“If I can say it, I can do it”.
This keeps me focused on a positive outcome. In an earlier posting; a way forward, I said, At home that evening I stood in front of the bathroom mirror looking straight into my eye and said “My name is Sid Hider. I have cancer, multiple myeloma. It is a cancer with no cure. I am going to fight it. I will be a survivor, I will be a survivor”.
That was a strong positive affirmation. Note the use of the first person…...I. To make the affirmation more powerful and personal I said it out loud in front of the mirror.
Negative words are avoided especially …don’t…not…can’t…won’t.
Shorter affirmations are easier to remember and repeat.
I wrote down a list of affirmations to read and use when needed.
Constantly repeating the affirmation verbally and in my mind gave me a positive focus on a healthy outcome.
Some sayings used during my treatment and recovery included:
“I am a survivor”.
“Never give up, never never ever ever give up.”
“I am stacking the odds in my favour”.
“I am healing”.
“I will get better”.
“My myeloma is being attacked”.
“My treatment is working”.
There are books and web sites that can help with positive affirmations.
Positive affirmations: Another tool to use for surviving cancer.
“If I can say it, I can do it”.
This keeps me focused on a positive outcome. In an earlier posting; a way forward, I said, At home that evening I stood in front of the bathroom mirror looking straight into my eye and said “My name is Sid Hider. I have cancer, multiple myeloma. It is a cancer with no cure. I am going to fight it. I will be a survivor, I will be a survivor”.
That was a strong positive affirmation. Note the use of the first person…...I. To make the affirmation more powerful and personal I said it out loud in front of the mirror.
Negative words are avoided especially …don’t…not…can’t…won’t.
Shorter affirmations are easier to remember and repeat.
I wrote down a list of affirmations to read and use when needed.
Constantly repeating the affirmation verbally and in my mind gave me a positive focus on a healthy outcome.
Some sayings used during my treatment and recovery included:
“I am a survivor”.
“Never give up, never never ever ever give up.”
“I am stacking the odds in my favour”.
“I am healing”.
“I will get better”.
“My myeloma is being attacked”.
“My treatment is working”.
There are books and web sites that can help with positive affirmations.
Positive affirmations: Another tool to use for surviving cancer.
Thursday, April 30, 2009
Blood tests for myeloma
Blood tests are used to confirm diagnose of myeloma and to monitor the disease during treatment and plateau stage (remission).
I have requested that a copy of my results from med lab be mailed to me so I can prepare for my next appointment. It can be misleading to read my results in isolation so I look for trends over several readings. For long term history I have created a spreadsheet with all my results included.
In my case I was diagnosed June 1st 2001 with multiple myeloma stage III IgG Kappa.
The key indicators for me are:
Red blood cells.
Red cells contain haemoglobin and transport oxygen from the lungs to all parts of the body. Low haemoglobin will give me anaemia causing paleness, lack of energy, tiredness, shortness of breath, dizziness and fatigue.
I monitor haemoglobin; normal 130 to 175 gms/L. (01 June 2001 = 120) (24 Feb 2009 = 145)
White blood cells.
White blood cells are the soldiers that fight infection. If they drop below normal I will be at risk of infection. There are 5 main types of white blood cells. The 2 main ones I monitor are leucocytes and neutrophils. Leucocytes fight infections including chest, urinary, skin and produce antibodies. Neutrophils fight bacterial and fungal infections.
Leucocytes; normal 4.0 to 11.0 (01 June 2001 = 7.9 (24 Feb 2009 = 7.06)
Neutrophils; normal 2.2 to 7.5 (01 June 2001 = 6.64) (24 Feb 2009 = 5.31)
Platelets.
Platelets help to prevent and control bleeding. If platelets are too low my blood thins. This causes bruising and excessive or prolonged bleeding following minor cuts or injury. Platelets; normal 150 to 400 (01 June 2001 = 362) (24 Feb 2009 = 213)
Creatinine. (Renal, related to the kidney)
Creatinine is a waste product of muscle breakdown normally excreted by the kidneys. The level of Creatinine in the blood will be raised if the kidneys are not functioning properly. I drink 2 litres of fluid a day to keep my kidneys flushed,
Creatinine; normal 60 to 105 umol/L (01 June 2001 = 61) (24 Feb 2009 = 80)
Calcium.
Calcium reading tells me if my bones are being eaten by myeloma. When lytic lesions are being formed calcium is a by-product that can be detected in the blood.
Calcium; normal 2.10 to 2,60 mmol/L (24 Feb 2009 = 2.38)
Immunoglobulins.
Proteins produced by plasma cells, my indicator is IgG. A normal reading is between 7 to 16 g/L. When IgG rises into the 20’s I become concerned. When it reaches 35 myeloma has returned.
IgG; normal 7.0 to 16.0 g/L (01 June 2001 = 80) (24 Feb 2009 = 10.1)
Total protein; normal 66 to 84 g/L (01 June 2001 = 75) (24 feb 2009 = 76)
Total globulin; normal 22 to 38 g/L (01 June 2001 = 43) (24 Feb 2009 = 25)
Bence-Jones protein (BJP).
A protein found in the urine of many myeloma patients. BJP is a small molecule that can potentially damage my kidneys.
Casual total protein; normal 0 to 0.3 g/L (01 June 2001 = 0.4) (24 Feb 2009 = 0.04)
Casual Bence-Jones; (01 June 2001 = 0.3)(24 Feb 2009 = 0)
Glossary:
Anaemia. Deficiency of red blood cells which results in a reduced level of the oxygen carrying pigment haemoglobin in the blood.
Haemoglobin. The iron containing pigment in red cells, which carries oxygen around the body.
Lytic lesions. Holes in my bones caused by substances secreted by myeloma cells.
Neutrophils. The most common type of cell within the granulocyte group of white blood cells.
I have requested that a copy of my results from med lab be mailed to me so I can prepare for my next appointment. It can be misleading to read my results in isolation so I look for trends over several readings. For long term history I have created a spreadsheet with all my results included.
In my case I was diagnosed June 1st 2001 with multiple myeloma stage III IgG Kappa.
The key indicators for me are:
Red blood cells.
Red cells contain haemoglobin and transport oxygen from the lungs to all parts of the body. Low haemoglobin will give me anaemia causing paleness, lack of energy, tiredness, shortness of breath, dizziness and fatigue.
I monitor haemoglobin; normal 130 to 175 gms/L. (01 June 2001 = 120) (24 Feb 2009 = 145)
White blood cells.
White blood cells are the soldiers that fight infection. If they drop below normal I will be at risk of infection. There are 5 main types of white blood cells. The 2 main ones I monitor are leucocytes and neutrophils. Leucocytes fight infections including chest, urinary, skin and produce antibodies. Neutrophils fight bacterial and fungal infections.
Leucocytes; normal 4.0 to 11.0 (01 June 2001 = 7.9 (24 Feb 2009 = 7.06)
Neutrophils; normal 2.2 to 7.5 (01 June 2001 = 6.64) (24 Feb 2009 = 5.31)
Platelets.
Platelets help to prevent and control bleeding. If platelets are too low my blood thins. This causes bruising and excessive or prolonged bleeding following minor cuts or injury. Platelets; normal 150 to 400 (01 June 2001 = 362) (24 Feb 2009 = 213)
Creatinine. (Renal, related to the kidney)
Creatinine is a waste product of muscle breakdown normally excreted by the kidneys. The level of Creatinine in the blood will be raised if the kidneys are not functioning properly. I drink 2 litres of fluid a day to keep my kidneys flushed,
Creatinine; normal 60 to 105 umol/L (01 June 2001 = 61) (24 Feb 2009 = 80)
Calcium.
Calcium reading tells me if my bones are being eaten by myeloma. When lytic lesions are being formed calcium is a by-product that can be detected in the blood.
Calcium; normal 2.10 to 2,60 mmol/L (24 Feb 2009 = 2.38)
Immunoglobulins.
Proteins produced by plasma cells, my indicator is IgG. A normal reading is between 7 to 16 g/L. When IgG rises into the 20’s I become concerned. When it reaches 35 myeloma has returned.
IgG; normal 7.0 to 16.0 g/L (01 June 2001 = 80) (24 Feb 2009 = 10.1)
Total protein; normal 66 to 84 g/L (01 June 2001 = 75) (24 feb 2009 = 76)
Total globulin; normal 22 to 38 g/L (01 June 2001 = 43) (24 Feb 2009 = 25)
Bence-Jones protein (BJP).
A protein found in the urine of many myeloma patients. BJP is a small molecule that can potentially damage my kidneys.
Casual total protein; normal 0 to 0.3 g/L (01 June 2001 = 0.4) (24 Feb 2009 = 0.04)
Casual Bence-Jones; (01 June 2001 = 0.3)(24 Feb 2009 = 0)
Glossary:
Anaemia. Deficiency of red blood cells which results in a reduced level of the oxygen carrying pigment haemoglobin in the blood.
Haemoglobin. The iron containing pigment in red cells, which carries oxygen around the body.
Lytic lesions. Holes in my bones caused by substances secreted by myeloma cells.
Neutrophils. The most common type of cell within the granulocyte group of white blood cells.
Tuesday, April 28, 2009
Team Sid, a way forward
As part of my way forward to myeloma survival I created a team, “Team Sid”, a network of help and support for medical, emotional and logistical reasons.
“Team Sid” comprised myself of course, my wife Myra, family, GP, Haematologist, Hospital day stay staff, cancer society, Leukaemia and Blood, work, neighbours and others when needed. My number one team member was Myra who is a trained caregiver, I had the best. More about Myra and others in another posting.
Being the Boss and chief administrator of “Team Sid” I compiled a list of contacts; contact name, designation, address, phone and email.
Another list was a” how to/what if” list, how to do anything that arose without panic. How to arrange transport if I could not drive myself, public transport timetables. How to use the St John’s ambulance service in an emergency. How to use the hospital shuttle bus. What to do if my temperature rose. Who to contact if I fell ill at home, etc, etc.
One of regular my tasks was to maintain my appointment book up to date. Every appointment and meeting was entered then added to the kitchen calendar as backup. Another task was to maintain a daily diary of how I felt, medication, anything that could be of use at appointments. Initially I did not realise the significance of recording my test results. My doctor and Haematologist gave them to me verbally. Later I learnt from a support group member that I could have the results posted to me. Once that commenced I created a spread sheet to record results electronically.
There were times when I could not cope due to health and side effect issues. Myra had been briefed on the lists so stepped in to take over my role...
“Team Sid” members were all told that I was living with myeloma and would recover to good health again. I led by example with my positive attitude, negativity was not to be tolerated.
“I will get better”.
By creating “Team Sid” I took an active role in my recovery giving me a sense of control over my illness.
On reflection the main benefit of “Team Sid” was organisation. Having all my contact and what if information up to date and in one place. A system I still follow today.
“Team Sid” comprised myself of course, my wife Myra, family, GP, Haematologist, Hospital day stay staff, cancer society, Leukaemia and Blood, work, neighbours and others when needed. My number one team member was Myra who is a trained caregiver, I had the best. More about Myra and others in another posting.
Being the Boss and chief administrator of “Team Sid” I compiled a list of contacts; contact name, designation, address, phone and email.
Another list was a” how to/what if” list, how to do anything that arose without panic. How to arrange transport if I could not drive myself, public transport timetables. How to use the St John’s ambulance service in an emergency. How to use the hospital shuttle bus. What to do if my temperature rose. Who to contact if I fell ill at home, etc, etc.
One of regular my tasks was to maintain my appointment book up to date. Every appointment and meeting was entered then added to the kitchen calendar as backup. Another task was to maintain a daily diary of how I felt, medication, anything that could be of use at appointments. Initially I did not realise the significance of recording my test results. My doctor and Haematologist gave them to me verbally. Later I learnt from a support group member that I could have the results posted to me. Once that commenced I created a spread sheet to record results electronically.
There were times when I could not cope due to health and side effect issues. Myra had been briefed on the lists so stepped in to take over my role...
“Team Sid” members were all told that I was living with myeloma and would recover to good health again. I led by example with my positive attitude, negativity was not to be tolerated.
“I will get better”.
By creating “Team Sid” I took an active role in my recovery giving me a sense of control over my illness.
On reflection the main benefit of “Team Sid” was organisation. Having all my contact and what if information up to date and in one place. A system I still follow today.
Subscribe to:
Posts (Atom)
