I was at daystay on Tuesday for my monthly Rev-lite trial consultation and Aredia.
All is well, all is stable, and test results remain in the normal zone, an uneventful medical month.
Cholesterol has returned to normal as well thanks to the diabetic diet.
The glucose reading is excellent considering what it was at diabetes diagnose. Thanks to the diet my fasting HbA1c % = 6.6
Perhaps I can now loosen up a bit and have some occasional treats.
I did have a pie on Fathers day, the local Green Bay Bakery award winning chicken and vegetable pie. I sniffed it, slowly ate it and made it last.
That ends cycle 5, now onto cycle 6.
I am now on my steroid dexamethasone 4 days a cycle which has made a big difference to quality of life. That's 23 days without it. Sleep has returned to normal except for those 4 days, the real Sid has returned. That doesn't stop me from talking to drivers who take the space between me and the next car or telling the footy referees of their mistakes.
Myeloma for me now is a series of treatment, remission, relapse etc though I hope the latest treatment is an extended remission. We use the theory when in remission do it now rather than later.
Therefore we are having a holiday in November, a 10 day coach tour of the bottom half of the South Island. We have previously seen the top half now we take in the remainder. Being a coach tour I can sit back to be taken every where and look out the window at the scenic wonders. We intend to take a scenic flight over the Southern Alps, Mt Cook and the glaciers as a big memory.
I am returning to work at Beca part time on the 20th, 3 days a week, 4 hours a day. There I am looking forward to the people contact and more brain involvement. More time depends on how I cope and work load availability, no worries about that.
Showing posts with label Dexamethasone. Show all posts
Showing posts with label Dexamethasone. Show all posts
Friday, September 17, 2010
Wednesday, August 18, 2010
Rev-lite trial: end of cycle 4.
Tuesday 17th August 2010 I completed my Rev-lite clinical trial cycle 4 (28 days) for myeloma. Trial protocol states that after 4 cycles the status of my disease will be reassessed. If my disease has become worse the trial will stop. If my disease has shown improvement I remain on the trial.
My disease has improved allowing me to remain on the trial.
From cycle 5 onwards the Lenalidomide dosage remains at 15mg for 21 days then 7 days free. Dexamethasone dosage remains at 20mg but only given for the first 4 days. For cycles 1 to 4 dexamethasone was 4 days on 4 days off for 21 days; the reduction is welcomed. A daily Aspirin continues as before.
I can now remain on this trial indefinitely or until it officially ends. Reasons for me stopping the trial is complications from side effects or if there is a return of myeloma.
A skeletal x-ray has been scheduled for 2 months time.
This is very heartening news for me. After 9 years since myeloma diagnose I am virtually myeloma free again heading back to normal all thanks to Lenalidomide. For how long, can't say, that's the nature of myeloma and in the hands of God. I feel humble that I received the opportunity to participate in the trial. There are others who Lenalidomide has not worked, my heart goes out to them.
I am convinced that the lower dosage of Lenalidomide and dexamethasone is still effective and does reduce the side effects.
Cycle 4 summary:
There were no significant problems during cycle 4 other than a minor head cold and later coughing phlegm for 3 days (it is winter in NZ). During week 3 of the previous 3 cycles there was a deteriation of the mouth and bottom lip. This was not present in the mouth this time, only a minor feeling on the lip.
Bowels were generally normal, Laxol and Kiwi fruit used sometimes for constipation during dexo days.
There was only one afternoon of fatigue this cycle, though there were occasional pockets of tiredness in the late afternoon. My strength is returning after the diabetes problem allowing me to walk 30 to 40 minutes a day.
I did get some minor cramp in my feet on days 15 and 16. First time for a while even though I am taking vitamin E for cramp.
Starting in the 4th week the skin at my protaphane (insulin) needle sites became bruised or blood spots appeared. This was thought to be related to my lower platelets and the Aspirin which thins the blood. We are currently monitoring this.
There are problems with dexamethasone side effects. Refer to the dexamethasone heading below.
Overall there was an improvement on the first 3 cycles.
Test results:
Today’s results are not yet available. The test results from 4 weeks ago indicate that I continue to respond well to the new treatment.
My IgG at beginning of the trial (28th April) was 32.5 g/L (USA 3250 mg/dl) last month (20th July) 10.7 (USA 1070). Normal range is 7 to 16.
Platelets: 306 now 172.
HB: 115 now 126
RBC: 4.13 now 4.3
WBC 6.7 now 4.8
Diabetes:
Dexamethasone increases the blood sugars. During cycle 4 on dexo days I controlled my blood/sugar levels by eating less carbohydrates and walking for regular exercise. The other option of increasing my insulin did not eventuate.
To help with food shopping, cooking and eating I have created a spreadsheet which lists food item, protein, carbohydrates and sugar, a good guide.
Weight loss:
During cycle 4 my weight remained constant at 65 kg (143 lbs). With my diabetes food recommendations now in place I don’t expect to regain much weight at all.
Dexamethasone:
The accumulative effect of dexamethasone over 4 cycles and earlier in the year combined with cyclophosphomide has accentuated some side effects.
Sleep problems during dexamethasone days have become an issue, the wide awake until early morning is there. I am reluctant to take my sedative (Zopiclone) as I get withdrawl symptoms when I stop. That is sleep for 30 minutes then wake with waves of restlessness in my arms and torso for about 3 hours. I have previously used morphine based pain relief some times in high dosages: Kaponal, m-elson, and recently Oxycontin. Perhaps the Zopiclone triggers some residual Morphine still in my body creating a craving. That’s my theory.
I can be aggressive and loud in my speech, very opinionated, don’t hold back. This was a big problem during the first 2 weeks after retuning from hospital with diabetes. I was in denial and angry, not the normal me. Now that I have accepted the diabetes the anger has reduced and we have put in place some systems to down size my speech problems. There are other ways I can do stress release.
I am more emotional this cycle, the tears can flow freely out of nowhere, this maybe a combination of the dexamethasone and the diabetes trauma.
Link: Dexamethasone for myeloma.
Peripheral neuropathy:
During cycle 4 there has again been a very small increase in my peripheral neuropathy in my feet, mainly an increase in the numbness of the soles. It is present in my left hand, but not the right hand. Peripheral neuropathy does reduce during the 4th week when there is no Lenalidomide. Keeping my feet warm, using vitamins and Alpha-lipoic-acid helps reduce the peripheral neuropathy symptoms.
General:
The diabetes was a big blow to me, I have now accepted it. Extra work now includes a change in eating habits, learning the nutritional values of food, avoiding sugar, keeping a daily food diary, the three times a day finger pricks for blood/sugar monitoring, two times a day insulin injections and gaining diabetes knowledge. There will be a posting soon on the diabetes impact on my myeloma and what I am doing to keep it simple.
Links: (Links open in a new window).
Rev-lite clinical trial. Commenced 28 April 2010.
Rev-lite clinical trial: end of cycle 1.
Rev-lite clinical trial: cycle 2, day 18.
Rev-lite clinical trial: end of cycle 2.
Rev-lite clinical trial: end of cycle 3.
My disease has improved allowing me to remain on the trial.
From cycle 5 onwards the Lenalidomide dosage remains at 15mg for 21 days then 7 days free. Dexamethasone dosage remains at 20mg but only given for the first 4 days. For cycles 1 to 4 dexamethasone was 4 days on 4 days off for 21 days; the reduction is welcomed. A daily Aspirin continues as before.
I can now remain on this trial indefinitely or until it officially ends. Reasons for me stopping the trial is complications from side effects or if there is a return of myeloma.
A skeletal x-ray has been scheduled for 2 months time.
This is very heartening news for me. After 9 years since myeloma diagnose I am virtually myeloma free again heading back to normal all thanks to Lenalidomide. For how long, can't say, that's the nature of myeloma and in the hands of God. I feel humble that I received the opportunity to participate in the trial. There are others who Lenalidomide has not worked, my heart goes out to them.
I am convinced that the lower dosage of Lenalidomide and dexamethasone is still effective and does reduce the side effects.
Cycle 4 summary:
There were no significant problems during cycle 4 other than a minor head cold and later coughing phlegm for 3 days (it is winter in NZ). During week 3 of the previous 3 cycles there was a deteriation of the mouth and bottom lip. This was not present in the mouth this time, only a minor feeling on the lip.
Bowels were generally normal, Laxol and Kiwi fruit used sometimes for constipation during dexo days.
There was only one afternoon of fatigue this cycle, though there were occasional pockets of tiredness in the late afternoon. My strength is returning after the diabetes problem allowing me to walk 30 to 40 minutes a day.
I did get some minor cramp in my feet on days 15 and 16. First time for a while even though I am taking vitamin E for cramp.
Starting in the 4th week the skin at my protaphane (insulin) needle sites became bruised or blood spots appeared. This was thought to be related to my lower platelets and the Aspirin which thins the blood. We are currently monitoring this.
There are problems with dexamethasone side effects. Refer to the dexamethasone heading below.
Overall there was an improvement on the first 3 cycles.
Test results:
Today’s results are not yet available. The test results from 4 weeks ago indicate that I continue to respond well to the new treatment.
My IgG at beginning of the trial (28th April) was 32.5 g/L (USA 3250 mg/dl) last month (20th July) 10.7 (USA 1070). Normal range is 7 to 16.
Platelets: 306 now 172.
HB: 115 now 126
RBC: 4.13 now 4.3
WBC 6.7 now 4.8
Diabetes:
Dexamethasone increases the blood sugars. During cycle 4 on dexo days I controlled my blood/sugar levels by eating less carbohydrates and walking for regular exercise. The other option of increasing my insulin did not eventuate.
To help with food shopping, cooking and eating I have created a spreadsheet which lists food item, protein, carbohydrates and sugar, a good guide.
Weight loss:
During cycle 4 my weight remained constant at 65 kg (143 lbs). With my diabetes food recommendations now in place I don’t expect to regain much weight at all.
Dexamethasone:
The accumulative effect of dexamethasone over 4 cycles and earlier in the year combined with cyclophosphomide has accentuated some side effects.
Sleep problems during dexamethasone days have become an issue, the wide awake until early morning is there. I am reluctant to take my sedative (Zopiclone) as I get withdrawl symptoms when I stop. That is sleep for 30 minutes then wake with waves of restlessness in my arms and torso for about 3 hours. I have previously used morphine based pain relief some times in high dosages: Kaponal, m-elson, and recently Oxycontin. Perhaps the Zopiclone triggers some residual Morphine still in my body creating a craving. That’s my theory.
I can be aggressive and loud in my speech, very opinionated, don’t hold back. This was a big problem during the first 2 weeks after retuning from hospital with diabetes. I was in denial and angry, not the normal me. Now that I have accepted the diabetes the anger has reduced and we have put in place some systems to down size my speech problems. There are other ways I can do stress release.
I am more emotional this cycle, the tears can flow freely out of nowhere, this maybe a combination of the dexamethasone and the diabetes trauma.
Link: Dexamethasone for myeloma.
Peripheral neuropathy:
During cycle 4 there has again been a very small increase in my peripheral neuropathy in my feet, mainly an increase in the numbness of the soles. It is present in my left hand, but not the right hand. Peripheral neuropathy does reduce during the 4th week when there is no Lenalidomide. Keeping my feet warm, using vitamins and Alpha-lipoic-acid helps reduce the peripheral neuropathy symptoms.
General:
The diabetes was a big blow to me, I have now accepted it. Extra work now includes a change in eating habits, learning the nutritional values of food, avoiding sugar, keeping a daily food diary, the three times a day finger pricks for blood/sugar monitoring, two times a day insulin injections and gaining diabetes knowledge. There will be a posting soon on the diabetes impact on my myeloma and what I am doing to keep it simple.
Links: (Links open in a new window).
Rev-lite clinical trial. Commenced 28 April 2010.
Rev-lite clinical trial: end of cycle 1.
Rev-lite clinical trial: cycle 2, day 18.
Rev-lite clinical trial: end of cycle 2.
Rev-lite clinical trial: end of cycle 3.
Friday, July 30, 2010
Rev-lite trial: end of cycle 3.
Tuesday 20th July 2010 I completed my Rev-lite clinical trial cycle (28 days) for myeloma.
Test results:
The test results available indicate that I continue to respond well to the new treatment. Results from other tests that take longer to complete are not yet available. My myeloma results IgG, globulin, total protein etc continue to head downwards. The drop in my bloods (platelets, neutrophils, haemoglobin, red counts etc) at the end of 3 weeks of Lenalidomide puts them at the bottom of the "normal" range as expected. It is noted that Anaemia is present.
Diabetes:
During cycle 3 I had suffered Candida which in combination with long term dexamethasone use resulted in my blood/sugar levels sky rocketing giving me diabetes type 2.
Link: Who let the dexo dogs out?
Dexamethasone increases the blood sugars. The final dexo days (17 to 20) coincided with my hospitalisation so the dexo was stopped for those four days. During cycle 4 on dexo days I control my blood/sugar levels by eating less carbohydrates and regular exercise which for me is walking. If this does not work I then will be increasing my twice daily insulin dosage.
Weight loss:
During this month I lost 7kg (15lbs) due to the Candida and diabetes, so far 1kg has gone back on. With my diabetes food recommendations now in place I don’t expect to regain much weight at all.
Pain relief:
My pain relief of Oxycontin slow release capsules has been stopped. Any pain relief will be controlled by paracetamol. There were no side effects during Oxycontin reduction but some side effect experiences after stopping completely. Mainly difficulty in getting to sleep, waves of restlessness in the arms. This reduced over 4 days and is no longer present.
Peripheral neuropathy:
During cycle 3 there has been a very small increase in my peripheral neuropathy in my feet, mainly a numbness of the soles. This does reduce during the 4th week of no Lenalidomide. Keeping my feet warm, using vitamins and Alpha-lipoic -acid helps reduce the peripheral neuropathy symptoms.
General:
The diabetes was a big blow to me, I have now accepted it. Extra work now includes a change in eating habits, learning the nutritional values of food, no sugar, keeping a daily food diary, the three times a day finger pricks for blood/sugar monitoring, two times a day insulin injections and gaining diabetes knowledge. There will be a posting soon on the diabetes impact on my myeloma and what I am doing to keep it simple.
Cycle 4 has commenced including the scheduled dexo.
Links: (Links open in a new window).
Rev-lite clinical trial. Commenced 28 April 2010.
Rev-lite clinical trial: end of cycle 1.
Rev-lite clinical trial: cycle 2, day 18.
Rev-lite clinical trial: end of cycle 2.
Test results:
The test results available indicate that I continue to respond well to the new treatment. Results from other tests that take longer to complete are not yet available. My myeloma results IgG, globulin, total protein etc continue to head downwards. The drop in my bloods (platelets, neutrophils, haemoglobin, red counts etc) at the end of 3 weeks of Lenalidomide puts them at the bottom of the "normal" range as expected. It is noted that Anaemia is present.
Diabetes:
During cycle 3 I had suffered Candida which in combination with long term dexamethasone use resulted in my blood/sugar levels sky rocketing giving me diabetes type 2.
Link: Who let the dexo dogs out?
Dexamethasone increases the blood sugars. The final dexo days (17 to 20) coincided with my hospitalisation so the dexo was stopped for those four days. During cycle 4 on dexo days I control my blood/sugar levels by eating less carbohydrates and regular exercise which for me is walking. If this does not work I then will be increasing my twice daily insulin dosage.
Weight loss:
During this month I lost 7kg (15lbs) due to the Candida and diabetes, so far 1kg has gone back on. With my diabetes food recommendations now in place I don’t expect to regain much weight at all.
Pain relief:
My pain relief of Oxycontin slow release capsules has been stopped. Any pain relief will be controlled by paracetamol. There were no side effects during Oxycontin reduction but some side effect experiences after stopping completely. Mainly difficulty in getting to sleep, waves of restlessness in the arms. This reduced over 4 days and is no longer present.
Peripheral neuropathy:
During cycle 3 there has been a very small increase in my peripheral neuropathy in my feet, mainly a numbness of the soles. This does reduce during the 4th week of no Lenalidomide. Keeping my feet warm, using vitamins and Alpha-lipoic -acid helps reduce the peripheral neuropathy symptoms.
General:
The diabetes was a big blow to me, I have now accepted it. Extra work now includes a change in eating habits, learning the nutritional values of food, no sugar, keeping a daily food diary, the three times a day finger pricks for blood/sugar monitoring, two times a day insulin injections and gaining diabetes knowledge. There will be a posting soon on the diabetes impact on my myeloma and what I am doing to keep it simple.
Cycle 4 has commenced including the scheduled dexo.
Links: (Links open in a new window).
Rev-lite clinical trial. Commenced 28 April 2010.
Rev-lite clinical trial: end of cycle 1.
Rev-lite clinical trial: cycle 2, day 18.
Rev-lite clinical trial: end of cycle 2.
Thursday, July 22, 2010
Who let the dexo dogs out?
Who let the dexo dogs out; they mauled me and left me with diabetes.
My long term use of dexamethasone was a big contributor to my diabetes; it is a dexamethasone side effect.
We had been monitoring my glucose levels; there was a gradual increase but not too alarming. I do have a family history of diabetes.
Over the last 3 weeks I was experiencing increasing fatigue and tiredness. As I am on a clinical trial I kept the hospital informed. My mouth developed what looked like thrush, white patches on the tongue and mouth so off the GP who diagnosed oral Candida. This was treated with lozogenes. I was to return in 2 days.
Candida appears on the lining of your mouth and tongue. A compromised immune system increases the risk. An underlying condition such as diabetes may be a cause.
My condition quickly progressed to increased fatigue, dizziness, light headedness, brain fog, excessive thirst and increased urinary frequency (dibetes symptoms). Next morning I could barely function, off to the hospital where tests showed I was badly dehydrated and had a very high glucose reading. Diagnose was diabetes type 2 resulting in 5 days in hospital to control it. During the 3 weeks I lost 9 kg (20 lbs), need to put back on half of that.
When I was discharged I came home with a bad attitude, I wanted to leave my diabetes at the hospital. I did not want the 3 times daily blood glucose monitoring, the twice daily insulin injections, the constant thinking about what I can or can’t eat and all the new knowledge I need to live with diabetes. It was an unwanted intrusion into my life with myeloma.
I am living with myeloma, learnt a lot about it and was coping well. The Rev-lite trial has lowered my IgG levels, bone pain has gone, Lenalidomide and dexamethasone is working. One more cycle would get me to the next stage, less dexamethasone.
There is no escape, my attitude had to change and slowly it has. I have put all my diabetes information, monitoring meter, insulin pen, and needles into a cardboard box, a one stop shop. That’s the same in my head space; the diabetes is in a box not interfering with my myeloma.
Links (open in new page):
Oral Candina
Clinical trial
My long term use of dexamethasone was a big contributor to my diabetes; it is a dexamethasone side effect.
We had been monitoring my glucose levels; there was a gradual increase but not too alarming. I do have a family history of diabetes.
Over the last 3 weeks I was experiencing increasing fatigue and tiredness. As I am on a clinical trial I kept the hospital informed. My mouth developed what looked like thrush, white patches on the tongue and mouth so off the GP who diagnosed oral Candida. This was treated with lozogenes. I was to return in 2 days.
Candida appears on the lining of your mouth and tongue. A compromised immune system increases the risk. An underlying condition such as diabetes may be a cause.
My condition quickly progressed to increased fatigue, dizziness, light headedness, brain fog, excessive thirst and increased urinary frequency (dibetes symptoms). Next morning I could barely function, off to the hospital where tests showed I was badly dehydrated and had a very high glucose reading. Diagnose was diabetes type 2 resulting in 5 days in hospital to control it. During the 3 weeks I lost 9 kg (20 lbs), need to put back on half of that.
When I was discharged I came home with a bad attitude, I wanted to leave my diabetes at the hospital. I did not want the 3 times daily blood glucose monitoring, the twice daily insulin injections, the constant thinking about what I can or can’t eat and all the new knowledge I need to live with diabetes. It was an unwanted intrusion into my life with myeloma.
I am living with myeloma, learnt a lot about it and was coping well. The Rev-lite trial has lowered my IgG levels, bone pain has gone, Lenalidomide and dexamethasone is working. One more cycle would get me to the next stage, less dexamethasone.
There is no escape, my attitude had to change and slowly it has. I have put all my diabetes information, monitoring meter, insulin pen, and needles into a cardboard box, a one stop shop. That’s the same in my head space; the diabetes is in a box not interfering with my myeloma.
Links (open in new page):
Oral Candina
Clinical trial
Thursday, November 26, 2009
Myeloma transplant - Days -02 to 05
This is a daily diary of my autologous stem cell transplant (ASCT) for multiple myeloma compiled from my diary and my own recollections.
The transplant was at the bone marrow transplant unit (BMTU), Auckland Hospital, New Zealand, December 2001.
As I had transport difficulties it was decided I would stay in the BMTU for the duration of the transplant. Due to a 4 day fever and complications removing my central line this turned out to be 25 days.
I must stress that this is my experience of my ASCT. Others will differ in protocol, hospital procedures and what their health was at that time. After speaking to others about their ASCT there is a variation in how one coped, we are all different.
My ASCT daily diary is over 4 postings, this is posting 1 of 4; days -02 to 05.
A complete list of links to my previous ASCT postings are at the end of the 4th ASCT posting.
Treatment/medication.
Acyclovir --antiviral (herpes, chicken pox etc.)
Allopurinol: -------decreases uric acid concentrations
Ativan --------------decreases anxiety
Cefpirone ----------antibiotic
Clexane ------------low molecular weight heparin to reduce blood clotting activity.
Codeine ------------to control diarrhoea
Cyclizure-----------anti- nausea
Dexamethasone--------- synthetic corticosteroid (steroid)
Gentamian----------bacterial antibiotic
Haloperidol --------anti-nausea
Maxalon ------------anti nausea
Melphalan high dose melphalan --(chemotherapy)
Meropenen ---------antibiotic
Methylprednisolone -----anti-inflammatory steroid
Panadol ---------------paracetamol based pain relief
Vitamin C
Temazepan ----------sedative
Zofran ----------------anti-nausea
Day -02: First day.
Good sleep at home; woke early.
It is a significant day, the beginning of my ASCT hospitalisation.
Admission to hospital, check in and administration tasks chest x-ray.
Headache in evening given panadol, vomit at 10pm, probably stress and dehydration.
Treatment/medication: Panadol, Clexane, Temazepan, Maxalon.
Red bloods 4.21; white bloods 9.04; platelets 300; weight 70.45kg (155 lbs)
Day -01: Chemotherapy infusion.
Broken sleep overnight, minor headache when getting up.
Felt down this morning, new environment, perked up when Myra arrived, my wife and caregiver.
Chemo in at mid-day, high dose melphalan and dexamethasone.
Saline continual through to mid-day tomorrow. Pass urine into containers for measuring total volume.
Visit by physio, spent time on Exercycle plus talk on what exercises to do. We agreed on Exercycle, stretching, exercises, walk outside, walk in corridors, walk in BMTU. All may be limited by white counts or fatigue.
Nausea started after dinner.
Treatment/medication: Panadol, Clexane, Allopurinol, Zofran, Dexamethasone, High dose Melphalan, Frusemide?.
Link: Myeloma Transplant - Caregiver
Link: <>Myeloma Transplant - Exercise
Day 0: Peripheral blood stem cell infusion.
Last night long time to get to sleep (steroids?).
On saline overnight, nausea pills toned down nausea, don’t feel like eating.
After breakfast 10 minutes Exercycle, walked 30 minutes, stretching.
Stem cell infusion at mid-day, all went well.
Minor light headed for a short while. Myra could smell the preservative, like strong corn.
Having Myra present perks me up.
Stayed up until 11pm watching TV.
Treatment/medication: Clexane, Allopurinol, Dexamethasone, Methylprednisolone, Peripheral blood stem cells, [Anti-nausea: Maxalon, Zofran x2].
Weight 71.05kg (157 lbs)
Link: <>Myeloma Transplant - Stem cell infusion.
Day 01:
Slept reasonable, dozed through to 7.30am.
Started dull headache and sore jaw joint, took panadol but no effect.
Remaining active.
Felt good for 3 hours then down after lunch, felt weepy and emotional.
Nausea, tired, eating little except for soft foods.
Treatment/medication: Clexane, Temazepan, Dexamethasone, Allopurinol, Acyclovir, Dexamethasone, Methylprednisolone, [Anti-nausea: Maxalon Zofran x2].
Red bloods 3.67; white bloods 10.80; platelets 229; weight 69.65kg (153.5 lbs)
Day 02: Food tasting bland.
Bad night, had sleeping pill with little effect, not much sleep at all. First 3 hours no sleep then broken sleep. Became apprehensive again.
Feeling better during day, went for a walk with Myra.
Food tasting bland, smell of some food is offensive.
Steroids keep me awake, last dose tomorrow.
Treatment/medication: Clexane, Temazepan, Ativan, Allopurinol, Acyclovir x2, Vitamin C, Methylprednisolone, [Anti-nausea: Zofran].
Weight 69.60kg (153.4 lbs)
Link: <>Myeloma Transplant - Food
Day 03:
Good solid sleep 10pm to 7.30am assisted by sleeping pills and sedative.
Felt better all day though susceptible to the occasional drop.
Walked through the corridors to the children’s Starship hospital with Myra to maintain exercise.
Mouth and tongue starting to go off, strange taste.
Still feel weepy at times. A few burps and hiccups today.
Treatment/medication: Clexane, Temazepan, Ativan, Allopurinol, Acyclovir x2, Vitamin C, Methylprednisolone.
Red bloods 3.46; white bloods 7.76; platelets 187; weight 70.40kg (155 lbs)
Day 04: Diarrhoea underway.
Good sleep with pills again. Woke at 4am with mouth/throat/gut problems. Nausea, dry reaching, mucus, salvia, burping. Had Maxalon then tablets.
Breakfast took a while. Food and drink difficult today. Struggled to eat dinner, took over an hour. Nausea after dinner again so took Zofran.
Diarrhoea underway, rumble, rumble. Gargle tonight included a small throw up.
Treatment/medication: Clexane, Temazepan, Ativan, Allopurinol, Acyclovir x2, Vitamin C, Dexamethasone, [Anti-nausea: Maxalon, Zofran].
Weight 68.70kg (151.5 lbs)
Link: <>Myeloma transplant - Nausea.
Link: <>Myeloma Transplant - Diarrhoea
Day 05: IV fluids commence.
Good sleep with pills again, woke with nausea.
Today a bad day, too much nausea, was off food. The pills reduced the nausea but it never went away, advised to take anti-nausea medication regularly, I agreed with this.
IV fluids commenced. Still doing exercises.
White counts now dropping, starting to go down into the valley.
Developing a rash, a rash sample was taken.
Felt fatigued.
Treatment/medication: Clexane, Temazepan, Ativan, Allopurinol, Acyclovir x2, Vitamin C, [Anti-nausea: Maxalon x3, Zofran x2].
Red bloods 3.80; white bloods 2.09; platelets 140; weight 67.15kg (148 lbs)
The transplant was at the bone marrow transplant unit (BMTU), Auckland Hospital, New Zealand, December 2001.
As I had transport difficulties it was decided I would stay in the BMTU for the duration of the transplant. Due to a 4 day fever and complications removing my central line this turned out to be 25 days.
I must stress that this is my experience of my ASCT. Others will differ in protocol, hospital procedures and what their health was at that time. After speaking to others about their ASCT there is a variation in how one coped, we are all different.
My ASCT daily diary is over 4 postings, this is posting 1 of 4; days -02 to 05.
A complete list of links to my previous ASCT postings are at the end of the 4th ASCT posting.
Treatment/medication.
Acyclovir --antiviral (herpes, chicken pox etc.)
Allopurinol: -------decreases uric acid concentrations
Ativan --------------decreases anxiety
Cefpirone ----------antibiotic
Clexane ------------low molecular weight heparin to reduce blood clotting activity.
Codeine ------------to control diarrhoea
Cyclizure-----------anti- nausea
Dexamethasone--------- synthetic corticosteroid (steroid)
Gentamian----------bacterial antibiotic
Haloperidol --------anti-nausea
Maxalon ------------anti nausea
Melphalan high dose melphalan --(chemotherapy)
Meropenen ---------antibiotic
Methylprednisolone -----anti-inflammatory steroid
Panadol ---------------paracetamol based pain relief
Vitamin C
Temazepan ----------sedative
Zofran ----------------anti-nausea
Day -02: First day.
Good sleep at home; woke early.
It is a significant day, the beginning of my ASCT hospitalisation.
Admission to hospital, check in and administration tasks chest x-ray.
Headache in evening given panadol, vomit at 10pm, probably stress and dehydration.
Treatment/medication: Panadol, Clexane, Temazepan, Maxalon.
Red bloods 4.21; white bloods 9.04; platelets 300; weight 70.45kg (155 lbs)
Day -01: Chemotherapy infusion.
Broken sleep overnight, minor headache when getting up.
Felt down this morning, new environment, perked up when Myra arrived, my wife and caregiver.
Chemo in at mid-day, high dose melphalan and dexamethasone.
Saline continual through to mid-day tomorrow. Pass urine into containers for measuring total volume.
Visit by physio, spent time on Exercycle plus talk on what exercises to do. We agreed on Exercycle, stretching, exercises, walk outside, walk in corridors, walk in BMTU. All may be limited by white counts or fatigue.
Nausea started after dinner.
Treatment/medication: Panadol, Clexane, Allopurinol, Zofran, Dexamethasone, High dose Melphalan, Frusemide?.
Link: Myeloma Transplant - Caregiver
Link: <>Myeloma Transplant - Exercise
Day 0: Peripheral blood stem cell infusion.
Last night long time to get to sleep (steroids?).
On saline overnight, nausea pills toned down nausea, don’t feel like eating.
After breakfast 10 minutes Exercycle, walked 30 minutes, stretching.
Stem cell infusion at mid-day, all went well.
Minor light headed for a short while. Myra could smell the preservative, like strong corn.
Having Myra present perks me up.
Stayed up until 11pm watching TV.
Treatment/medication: Clexane, Allopurinol, Dexamethasone, Methylprednisolone, Peripheral blood stem cells, [Anti-nausea: Maxalon, Zofran x2].
Weight 71.05kg (157 lbs)
Link: <>Myeloma Transplant - Stem cell infusion.
Day 01:
Slept reasonable, dozed through to 7.30am.
Started dull headache and sore jaw joint, took panadol but no effect.
Remaining active.
Felt good for 3 hours then down after lunch, felt weepy and emotional.
Nausea, tired, eating little except for soft foods.
Treatment/medication: Clexane, Temazepan, Dexamethasone, Allopurinol, Acyclovir, Dexamethasone, Methylprednisolone, [Anti-nausea: Maxalon Zofran x2].
Red bloods 3.67; white bloods 10.80; platelets 229; weight 69.65kg (153.5 lbs)
Day 02: Food tasting bland.
Bad night, had sleeping pill with little effect, not much sleep at all. First 3 hours no sleep then broken sleep. Became apprehensive again.
Feeling better during day, went for a walk with Myra.
Food tasting bland, smell of some food is offensive.
Steroids keep me awake, last dose tomorrow.
Treatment/medication: Clexane, Temazepan, Ativan, Allopurinol, Acyclovir x2, Vitamin C, Methylprednisolone, [Anti-nausea: Zofran].
Weight 69.60kg (153.4 lbs)
Link: <>Myeloma Transplant - Food
Day 03:
Good solid sleep 10pm to 7.30am assisted by sleeping pills and sedative.
Felt better all day though susceptible to the occasional drop.
Walked through the corridors to the children’s Starship hospital with Myra to maintain exercise.
Mouth and tongue starting to go off, strange taste.
Still feel weepy at times. A few burps and hiccups today.
Treatment/medication: Clexane, Temazepan, Ativan, Allopurinol, Acyclovir x2, Vitamin C, Methylprednisolone.
Red bloods 3.46; white bloods 7.76; platelets 187; weight 70.40kg (155 lbs)
Day 04: Diarrhoea underway.
Good sleep with pills again. Woke at 4am with mouth/throat/gut problems. Nausea, dry reaching, mucus, salvia, burping. Had Maxalon then tablets.
Breakfast took a while. Food and drink difficult today. Struggled to eat dinner, took over an hour. Nausea after dinner again so took Zofran.
Diarrhoea underway, rumble, rumble. Gargle tonight included a small throw up.
Treatment/medication: Clexane, Temazepan, Ativan, Allopurinol, Acyclovir x2, Vitamin C, Dexamethasone, [Anti-nausea: Maxalon, Zofran].
Weight 68.70kg (151.5 lbs)
Link: <>Myeloma transplant - Nausea.
Link: <>Myeloma Transplant - Diarrhoea
Day 05: IV fluids commence.
Good sleep with pills again, woke with nausea.
Today a bad day, too much nausea, was off food. The pills reduced the nausea but it never went away, advised to take anti-nausea medication regularly, I agreed with this.
IV fluids commenced. Still doing exercises.
White counts now dropping, starting to go down into the valley.
Developing a rash, a rash sample was taken.
Felt fatigued.
Treatment/medication: Clexane, Temazepan, Ativan, Allopurinol, Acyclovir x2, Vitamin C, [Anti-nausea: Maxalon x3, Zofran x2].
Red bloods 3.80; white bloods 2.09; platelets 140; weight 67.15kg (148 lbs)
Thursday, September 10, 2009
Health update September 2009
Previous update summary July 2009:
After having my second stem cell transplant in August 2008 all was going well, the 100 day tests were positive, IgG was down to normal, I was feeling good.
Then my 3 monthly tests in May 2009 showed my IgG had increased from 10 to 18, measured g/l in NZ (7 to 16 is the normal range). A month later it had risen to 22, the trend was heading up. Except for the proteins all other tests were OK.
This update September 10 2009.
IgG results: g/l (USA mg/dl)
24 Feb 2009 = 10.1 (1010)
18 May 2009 = 18.4 (1840)
16 June 2009 = 22.2 (2220)
21 July 2009 = 21.8 (2180)
18 Aug 2009 = 12.7 (1270)
Treatment:
It was decided to try to reduce the IgG early with chemotherapy before it got too high.
Valcade and Revlimide are not funded by Pharmac in New Zealand; we will try them on a trial or at a later date. A link to Valcade, Revlimide and Pharmac NZ summary is here.
Chemotherapy; cyclophosphamide (Chemo) and dexamethasone (steroid):
First 28 day cycle commenced Wednesday 1st July 2009.
Second 28 day cycle commenced Wednesday 29th July 2009.
Third 28 day cycle commenced Wednesday 26th August 2009.
Cyclophosphamide: 500mg day 1, 8, 15, 22.
Dexamethasone: 20mg day 1, 2, 3, 4 and 15, 16 17, 18.
Allopurinol: 300mg, 1 tablet per day.
Bactrim: 480mg, 2 tablets Mon/Wed/Fri.
As you can see by the 18th Aug result there has been a dramatic drop in IgG.
When taking the dexamethasone I have sleep problems for about 6 days but no other side effects. I get fatigue the day after I take the cyclophosphamide, no nausea and no other side effects. Bowels have been normal. I still have Aredia monthly.
Soft tissue plasmacytoma:
Two soft tissue Plasmacytoma developed on my skull as the IgG increased, a fine needle biopsy confirmed what they were. They were a pronounced lump, no pain or discomfort, getting larger as the IgG increased. Seven days after the chemo commenced they had reduced by 50%, at the end of the first cycle they had reduced by 80%. By the end of the second cycle they had disappeared altogether.
I have had 2 plasmacytoma in bones before when in relapse; June 2007 left humerus, October 2008 right humerus. Both required surgery for titanium rod prosthesis..
Bones:
My inflamed sternum from continual coughing in June slowly reduced, disappearing mid July. That was painful, like a knife in my chest. X-rays showed no fractures.
At the end of July I had an uncontrollable sneezing bout which fractured a rib, right side, at the back mid height. Pain relief went from Panadol to Codeine to Paradex. I had to sleep on my back for 2 weeks and movement was restricted. It took 3 weeks to start to feel comfortable again and reduce the pain relief.
The rib fracture was a reminder that there is still residual bone damage from my initial state at diagnose in 2001 and relapse in 2007/2008 and I need to be careful. The bone damage can be seen on x-rays.
Peripheral neuropathy:
Peripheral neuropathy from 14 months on Thalidomide in 2007/2008 has stayed in my feet though has reduced. Only mild, doesn’t restrict me other than having to wear socks 24/7 as my feet can get cold. To help myself I massage my feet and take vitamin B+ and Alpha-lipoic-acid.
Chemo brain:
Chemo brain from my stem cell transplant in Aug 2008 has subsided, memory is better but I still have a problem remembering names. I still write lists of things to do, work procedures and technical terms. People’s names with a word prompt are kept in a notebook. E.g. Mary Smith, lady with a limp.
General health:
General health is fine. I am working 5 days a week 9.00 to 4.30. Drinking 2 L of liquid per day, mostly water. Myra and I follow the principles of a low GI diet; beans, pulses, protein, lots of fruit and vegetables. Walk for an hour both days in the weekends and 30 minutes at least twice during the week. Currently no bone pain or pain relief or restricted movement.
Vitamins:
The vitamins I take are:
A man’s multivitamin: Mon/Wed/Fri.
Vitamin C: 250mg/day.
Cartia: 1/day to thin my blood.
Vitamin B+ complex: For peripheral neuropathy, 1 per day.
Alpha-lipoic-acid: For peripheral neuropathy, 300mg morning and evening.
Glossary:
Cyclophosphamide: Cyclophosphamide is a chemotherapy drug that is given as a treatment for many types of cancer.
Dexamethasone: Dexamethasone is a synthetic adrenocartia steroid. When used in the treatment of myeloma it can trigger the destruction of myeloma cells. My seek and destroy missile.
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.
Bactrim: Used as an antibiotic during chemotherapy.Aredia: In myeloma Aredia (a bisphosphonate) can delay and reduce the number of skeletal events and reduce bone pain.
This is one of “part 2” a series of postings relating to my autologous stem cell transplant for myeloma. As they are complete the posting series can be found under labels/part 2 [Part 2 link]
After having my second stem cell transplant in August 2008 all was going well, the 100 day tests were positive, IgG was down to normal, I was feeling good.
Then my 3 monthly tests in May 2009 showed my IgG had increased from 10 to 18, measured g/l in NZ (7 to 16 is the normal range). A month later it had risen to 22, the trend was heading up. Except for the proteins all other tests were OK.
This update September 10 2009.
IgG results: g/l (USA mg/dl)
24 Feb 2009 = 10.1 (1010)
18 May 2009 = 18.4 (1840)
16 June 2009 = 22.2 (2220)
21 July 2009 = 21.8 (2180)
18 Aug 2009 = 12.7 (1270)
Treatment:
It was decided to try to reduce the IgG early with chemotherapy before it got too high.
Valcade and Revlimide are not funded by Pharmac in New Zealand; we will try them on a trial or at a later date. A link to Valcade, Revlimide and Pharmac NZ summary is here.
Chemotherapy; cyclophosphamide (Chemo) and dexamethasone (steroid):
First 28 day cycle commenced Wednesday 1st July 2009.
Second 28 day cycle commenced Wednesday 29th July 2009.
Third 28 day cycle commenced Wednesday 26th August 2009.
Cyclophosphamide: 500mg day 1, 8, 15, 22.
Dexamethasone: 20mg day 1, 2, 3, 4 and 15, 16 17, 18.
Allopurinol: 300mg, 1 tablet per day.
Bactrim: 480mg, 2 tablets Mon/Wed/Fri.
As you can see by the 18th Aug result there has been a dramatic drop in IgG.
When taking the dexamethasone I have sleep problems for about 6 days but no other side effects. I get fatigue the day after I take the cyclophosphamide, no nausea and no other side effects. Bowels have been normal. I still have Aredia monthly.
Soft tissue plasmacytoma:
Two soft tissue Plasmacytoma developed on my skull as the IgG increased, a fine needle biopsy confirmed what they were. They were a pronounced lump, no pain or discomfort, getting larger as the IgG increased. Seven days after the chemo commenced they had reduced by 50%, at the end of the first cycle they had reduced by 80%. By the end of the second cycle they had disappeared altogether.
I have had 2 plasmacytoma in bones before when in relapse; June 2007 left humerus, October 2008 right humerus. Both required surgery for titanium rod prosthesis..
Bones:
My inflamed sternum from continual coughing in June slowly reduced, disappearing mid July. That was painful, like a knife in my chest. X-rays showed no fractures.
At the end of July I had an uncontrollable sneezing bout which fractured a rib, right side, at the back mid height. Pain relief went from Panadol to Codeine to Paradex. I had to sleep on my back for 2 weeks and movement was restricted. It took 3 weeks to start to feel comfortable again and reduce the pain relief.
The rib fracture was a reminder that there is still residual bone damage from my initial state at diagnose in 2001 and relapse in 2007/2008 and I need to be careful. The bone damage can be seen on x-rays.
Peripheral neuropathy:
Peripheral neuropathy from 14 months on Thalidomide in 2007/2008 has stayed in my feet though has reduced. Only mild, doesn’t restrict me other than having to wear socks 24/7 as my feet can get cold. To help myself I massage my feet and take vitamin B+ and Alpha-lipoic-acid.
Chemo brain:
Chemo brain from my stem cell transplant in Aug 2008 has subsided, memory is better but I still have a problem remembering names. I still write lists of things to do, work procedures and technical terms. People’s names with a word prompt are kept in a notebook. E.g. Mary Smith, lady with a limp.
General health:
General health is fine. I am working 5 days a week 9.00 to 4.30. Drinking 2 L of liquid per day, mostly water. Myra and I follow the principles of a low GI diet; beans, pulses, protein, lots of fruit and vegetables. Walk for an hour both days in the weekends and 30 minutes at least twice during the week. Currently no bone pain or pain relief or restricted movement.
Vitamins:
The vitamins I take are:
A man’s multivitamin: Mon/Wed/Fri.
Vitamin C: 250mg/day.
Cartia: 1/day to thin my blood.
Vitamin B+ complex: For peripheral neuropathy, 1 per day.
Alpha-lipoic-acid: For peripheral neuropathy, 300mg morning and evening.
Glossary:
Cyclophosphamide: Cyclophosphamide is a chemotherapy drug that is given as a treatment for many types of cancer.
Dexamethasone: Dexamethasone is a synthetic adrenocartia steroid. When used in the treatment of myeloma it can trigger the destruction of myeloma cells. My seek and destroy missile.
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.
Bactrim: Used as an antibiotic during chemotherapy.Aredia: In myeloma Aredia (a bisphosphonate) can delay and reduce the number of skeletal events and reduce bone pain.
This is one of “part 2” a series of postings relating to my autologous stem cell transplant for myeloma. As they are complete the posting series can be found under labels/part 2 [Part 2 link]
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.
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.
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