I was diagnosed with multiple myeloma and amyloidosis at age 47 in 2009. I live in Sydney, Australia.
The doctors started me on thalidomide / dexamethasone / cyclophosphamide, which showed good results, but was stopped due to peripheral neuropathy.
I had a relapse in 2012 where doctors tried the thalidomide / dex treatment to no avail. We then tried the Velcade / cyclophosphamide / dex treatment for 5 cycles and that also failed to show any positive outcomes.
I had an autologous stem cell transplant in November 2013, but unfortunately blood tests undertaken on 6 August 2014 showed an upward trend in the light chain markers, free lambda jumping from 34.33 (22 May, 2014) to 209.55.
I have since undertaken (20 August, 2014) another blood test where my doctor has reported that the paraprotein has jumped to 9.7 g/L (0.97 g/dL).
I do have cardiac (PRO-BNP 164.0 & TROPONIN T of 31) and kidney (creatinine 190 & urea 10.0) involvement due to the amyloidosis.
I do have full confidence in my treating doctor, but I also would like to seek other analysis and advice from anyone who had similar conditions or experience.
Forums
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SamM - Name: Sam
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2009
- Age at diagnosis: 47
Re: Relapse after autologous stem cell transplant - options?
My husband was diagnosed in 10/2008 at age 40.
His story is somewhat similar to yours.
He started with initial drug therapy that worked well, followed by his first auto transplant in March 2009.
He relapsed in 2012.
We visited the Seattle Cancer Care Alliance in Seattle. They came up with the game plan that he went with.
When we got home, he started 3 rounds of DVR PACE, which took care of the tumors that had formed. He then had a 2nd auto transplant then followed that about 90 days later with a reduced intensity allo (donor) transplant in 11/2012.. The reduced intensity is low dose chemo. He had that done at the Colorado Blood Cancer Institute in Denver, Co. He did have to spend about 2.5 months in Denver when we live in Montana. No hospital in Montana does the allo transplant.
He has had fairly good results with it with the exception of some tumors coming back that they have successfully dealt with through radiation. Otherwise, his numbers have stayed in line and he is going on 2 years now.
I completely understand what you're dealing with. I wish you the best in your treatment.
His story is somewhat similar to yours.
He started with initial drug therapy that worked well, followed by his first auto transplant in March 2009.
He relapsed in 2012.
We visited the Seattle Cancer Care Alliance in Seattle. They came up with the game plan that he went with.
When we got home, he started 3 rounds of DVR PACE, which took care of the tumors that had formed. He then had a 2nd auto transplant then followed that about 90 days later with a reduced intensity allo (donor) transplant in 11/2012.. The reduced intensity is low dose chemo. He had that done at the Colorado Blood Cancer Institute in Denver, Co. He did have to spend about 2.5 months in Denver when we live in Montana. No hospital in Montana does the allo transplant.
He has had fairly good results with it with the exception of some tumors coming back that they have successfully dealt with through radiation. Otherwise, his numbers have stayed in line and he is going on 2 years now.
I completely understand what you're dealing with. I wish you the best in your treatment.
Re: Relapse after autologous stem cell transplant - options?
Jadefumc
Its great that your husband is doing great now. Does your husband suffer from both multiple myeloma and amyloidosis?
Because of the heart involvement (cardiac amyloidosis), I am afraid that the doctors are reluctant to carry out another transplant.
Just out of curiosity: Prior to diagnosis, was your husband a runner? Did he have s stressful job, did he work long hours?
Best wishes,
Sam
Its great that your husband is doing great now. Does your husband suffer from both multiple myeloma and amyloidosis?
Because of the heart involvement (cardiac amyloidosis), I am afraid that the doctors are reluctant to carry out another transplant.
Just out of curiosity: Prior to diagnosis, was your husband a runner? Did he have s stressful job, did he work long hours?
Best wishes,
Sam
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SamM - Name: Sam
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2009
- Age at diagnosis: 47
Re: Relapse after autologous stem cell transplant - options?
Hi Sam
You are younger than I am - and I have light chain deposition disease with multiple myeloma - which is a bit different from amyloidosis. My light chains had destroyed 75% of my kidneys by the time I was diagnosed. So my kidney function went down to 20% at one point before my stem cell transplant. (Creatinine was as high as 3.1 and 2.4)
I had a stem cell transplant one year earlier than you - in November 2012. In February 2013, I was started on 5mg Revlimid every other day. Then the doctor increased that to 10 mg every other day but I was sick too much, so back down to 5 mg every other day. My kappa free light chains had started creeping up again almost immediately. They were back up to 65 (normal is defined as 3.3-19.7)
In March of this year I asked my oncologist about a "rumor" that avoiding sugar could prolong remission. He said studies do show that keeping blood glucose low and steady with a "diabetic diet" helps some people.
I have been doing that since March and it has caused my kappa free light chains to go down. Kappa free light chains have gone down every month that I have eaten this "diabetic diet"
You might try that - avoid sugar and carbs and see if it helps?
Cathy
You are younger than I am - and I have light chain deposition disease with multiple myeloma - which is a bit different from amyloidosis. My light chains had destroyed 75% of my kidneys by the time I was diagnosed. So my kidney function went down to 20% at one point before my stem cell transplant. (Creatinine was as high as 3.1 and 2.4)
I had a stem cell transplant one year earlier than you - in November 2012. In February 2013, I was started on 5mg Revlimid every other day. Then the doctor increased that to 10 mg every other day but I was sick too much, so back down to 5 mg every other day. My kappa free light chains had started creeping up again almost immediately. They were back up to 65 (normal is defined as 3.3-19.7)
In March of this year I asked my oncologist about a "rumor" that avoiding sugar could prolong remission. He said studies do show that keeping blood glucose low and steady with a "diabetic diet" helps some people.
I have been doing that since March and it has caused my kappa free light chains to go down. Kappa free light chains have gone down every month that I have eaten this "diabetic diet"
You might try that - avoid sugar and carbs and see if it helps?
Cathy
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antelope1225 - Name: Cathy1225
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: May 25 2012
- Age at diagnosis: 55
Re: Relapse after autologous stem cell transplant - options?
Good day Cathy
Thank you for your advice. I will definitely try your suggestions and stop sugar & carbs. No more sugar from today.
Are you still taking the 5mg of Revlimid?
Thank you for your advice. I will definitely try your suggestions and stop sugar & carbs. No more sugar from today.
Are you still taking the 5mg of Revlimid?
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SamM - Name: Sam
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2009
- Age at diagnosis: 47
Re: Relapse after autologous stem cell transplant - options?
Hi Sam.
Yes I am still taking Revlimid.
When my doctor told me to eat a diabetic diet, I went online and typed in "Diabetic Diet" and believe it or not there is a great book by that name. The Author is Dr Bernstein and that is how I started learning to eat a diabetic diet.
I hope it works for you, too - and I hope it keeps working for me.
Cathy
Yes I am still taking Revlimid.
When my doctor told me to eat a diabetic diet, I went online and typed in "Diabetic Diet" and believe it or not there is a great book by that name. The Author is Dr Bernstein and that is how I started learning to eat a diabetic diet.
I hope it works for you, too - and I hope it keeps working for me.
Cathy
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antelope1225 - Name: Cathy1225
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: May 25 2012
- Age at diagnosis: 55
Re: Relapse after autologous stem cell transplant - options?
I started a new treatment last Saturday.
I am currently on Revilimid (lenalidomide) 10 mg a day and 40 mg (10 tablets) of dexamethasone once a week.
The dex knocked me around a bit. I took it Sunday night. Slept well Sunday, but could not fall to sleep until after 0130 am on Monday night. Tuesday felt tired and I almost lost my voice as I struggled to talk.
I am currently on Revilimid (lenalidomide) 10 mg a day and 40 mg (10 tablets) of dexamethasone once a week.
The dex knocked me around a bit. I took it Sunday night. Slept well Sunday, but could not fall to sleep until after 0130 am on Monday night. Tuesday felt tired and I almost lost my voice as I struggled to talk.
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SamM - Name: Sam
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2009
- Age at diagnosis: 47
Re: Relapse after autologous stem cell transplant - options?
SamM,
My husband has the weak voice every week, the day after dex. Day 2 it's back to normal. The sleep issue the night after dex is pretty universal. If you do a forum search you will find tips that others use to help with the sleep problems ... time of day they take it, sleeping pill, Xanax, Benadryl, etc. A little trial and error and you will find what works best for you.
My husband has the weak voice every week, the day after dex. Day 2 it's back to normal. The sleep issue the night after dex is pretty universal. If you do a forum search you will find tips that others use to help with the sleep problems ... time of day they take it, sleeping pill, Xanax, Benadryl, etc. A little trial and error and you will find what works best for you.
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rumnting - Who do you know with myeloma?: husband
- When were you/they diagnosed?: 4/9/11
- Age at diagnosis: 54
Re: Relapse after autologous stem cell transplant - options?
Good day
Completed the first cycle (Revlimid + dex) on Friday 19th September. I was really looking forward to the week off Revlimid. But, unfortunately, I ended up feeling sick. Pain and discomfort overtook my mid section and I ended up in hospital, where they gave me frusemide (furosemide, Lasix) to discharge the excess fluid from my body. I dropped 3 kilos (6.6 pounds) during my first day in hospital.
My kidney and heart markers had jumped whilst on this treatment (daily 10mg Revlimid + 40 mg dex weekly). My lambda light chain level had also spiked.
I have since learned that cardiac amyloidosis sufferers struggle with high dose dex.
My oncologist had other ideas and decided to boost the dex by giving me 20 mg (5 tablets X 4 mg) for 4 days straight.
I am now on my second cycle and the doctors have increased the Revlimid to 15 mg a day and kept me on weekly 40 mg of dex.
Completed the first cycle (Revlimid + dex) on Friday 19th September. I was really looking forward to the week off Revlimid. But, unfortunately, I ended up feeling sick. Pain and discomfort overtook my mid section and I ended up in hospital, where they gave me frusemide (furosemide, Lasix) to discharge the excess fluid from my body. I dropped 3 kilos (6.6 pounds) during my first day in hospital.
My kidney and heart markers had jumped whilst on this treatment (daily 10mg Revlimid + 40 mg dex weekly). My lambda light chain level had also spiked.
I have since learned that cardiac amyloidosis sufferers struggle with high dose dex.
My oncologist had other ideas and decided to boost the dex by giving me 20 mg (5 tablets X 4 mg) for 4 days straight.
I am now on my second cycle and the doctors have increased the Revlimid to 15 mg a day and kept me on weekly 40 mg of dex.
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SamM - Name: Sam
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2009
- Age at diagnosis: 47
Re: Relapse after autologous stem cell transplant - options?
Hi SamM
I have heard that amyloidosis can be hard on your heart and I can imagine taking dex must make your heart feel like it is beating too fast.
Dex was the drug I most disliked. I was on 40 mg per day for 4 days in a row and then off for 4 days in continuous cycles. Very tough. I felt like a speed freak (no sleep) on my up days and crashed on my down days.
But, it was very effective in combination with thalidomide (Revlimid is generally given instead) and Velcade shots 2x per week. Can you get copies of your blood tests? It might encourage you if you can see that the meds are helping.
I have heard that amyloidosis can be hard on your heart and I can imagine taking dex must make your heart feel like it is beating too fast.
Dex was the drug I most disliked. I was on 40 mg per day for 4 days in a row and then off for 4 days in continuous cycles. Very tough. I felt like a speed freak (no sleep) on my up days and crashed on my down days.
But, it was very effective in combination with thalidomide (Revlimid is generally given instead) and Velcade shots 2x per week. Can you get copies of your blood tests? It might encourage you if you can see that the meds are helping.
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antelope1225 - Name: Cathy1225
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: May 25 2012
- Age at diagnosis: 55
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