Myeloma beginner's help

The internet has a great source of information for newly diagnosed myeloma patients.
I recommend two articles found on the North Texas Myeloma support group web page. Unfortunately I cannot verify the date they were written or if they have been updated since publication, my emails were unanswered. Access the articles on the North Texas Myeloma support group web page by control/click the title.

Living successfully with multiple myeloma by Peter Tischler.
An informative article listing points that one must know and do to best ensure that one will survive myeloma with the quality of life one wants. I discovered Peter’s article in 2005, four years after my diagnose. Fortunately I had been doing most of what Peter suggests so just needed to fine tune my approach.
His main points are:
1. Take care of your kidneys.
2. Avoid infections.
3. Form a survivor team.
4. Don’t be a good patient.
5. Educate yourself. (this may be you, your partner or a family member)
6. Maintain your immune system.
7. Keep medical records.
8. Know your doctor’s limitations.
9. Early warning system – avoiding crises.

Myeloma 101 by Peter Tischler.
Myeloma 101 explains the basics of myeloma, diagnostic tests that are used and treatments for myeloma.
There are three levels of explanation: L1 simple explanation, L2 more detail, L3 more technical stuff.
Contents include:
Myeloma 101.
What is multiple myeloma?
The myeloma cell.
Myeloma protein.
The supporting cast.
How myeloma affects us.
Different types of myeloma.
Staging myeloma.
Testing – Blood tests.
Testing – Urine tests
Testing – Scans.
Testing – Other.
Treatment – Overview.
Treatment – Standard/frontline
Treatment – Maintenance.
Treatment – Transplants.

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.

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.

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.

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.

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.

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.

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.

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.

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 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.

Myeloma, 8 year celebration

My initial myeloma diagnose was on June 1st 2001, 8 years ago.
On my blog home page is a counter that says:
Time since diagnose June 1st 2001, 2922 days, 8 years 0 months 0 days.
I feel very humble to have achieved an 8 year survival of myeloma especially as initial prognosis was 3 to 5 years. I have benefited from medical progress.
Good planning, good support, good attitude, good treatment, good family, good luck and good love have all contributed.
All my myeloma friends who are no longer with me are remembered today with love and respect. They taught me so much.
To my wife Myra, thank you, I love you.
Today I celebrate, tomorrow I continue living with myeloma.