Hi Cathy
Unfortunately the blood test after the first cycle was terrible as the light chain, heart markers (Pro BNP) and kidney markers had gotten worse.
I will have to wait until the end of this second cycle around the middle of October before I have the next blood test. I am hopeful that the results will move in the right direction.
You are not wrong about amyloidosis being hard on the heart. I must admit that I am struggling physically and it's mainly due to my heart, and I find the 3 days after dex are the hardest. The doctors have also put me on fluid restrictions of 1.5 litres a day.
Anyway, I will carry on, count the days down until the next results, hope and pray.
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?
Hi Sam.
I am sorry to hear your heart and kidney markers were worse after the first cycle, and your lambda light chains also spiked.
It is hard to do those drugs – especially if you are not seeing progress.
Are you on dialysis? Why would they limit your fluid if your kidneys are struggling?
You have already had a SCT but I think you might not be a candidate for another one because of your heart?
I would think it would be harder on your heart when you are taking dex, but you say that it is harder during the days after it? Have you noticed anything that calms your heart? Relaxation, prayer or warm baths, reading a good novel? I would think anything you can do to make your heart have less stress would be good.
Please let us know how your next blood test goes.
I am sorry to hear your heart and kidney markers were worse after the first cycle, and your lambda light chains also spiked.
It is hard to do those drugs – especially if you are not seeing progress.Are you on dialysis? Why would they limit your fluid if your kidneys are struggling?
You have already had a SCT but I think you might not be a candidate for another one because of your heart?
I would think it would be harder on your heart when you are taking dex, but you say that it is harder during the days after it? Have you noticed anything that calms your heart? Relaxation, prayer or warm baths, reading a good novel? I would think anything you can do to make your heart have less stress would be good.
Please let us know how your next blood test goes.
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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?
Hi Cathy,
No, I am not on dialysis.
Fluid restrictions are due to fluid retention, which is mainly due to my heart struggling, which is obviously bad for my kidneys. There is unfortunately some sacrifice, and in this case it is my kidneys.
You are right about dex being hard on the heart. I have read a few articles that report cardiac amyloidosis patients do struggle with high dosage of dex.
I will post my next blood results after the 20th October.
In the mean time, I will monitor my condition a lot closer. Try to walk a little longer each day and attend the hospital's physio gymnasium once a week.
No, I am not on dialysis.
Fluid restrictions are due to fluid retention, which is mainly due to my heart struggling, which is obviously bad for my kidneys. There is unfortunately some sacrifice, and in this case it is my kidneys.
You are right about dex being hard on the heart. I have read a few articles that report cardiac amyloidosis patients do struggle with high dosage of dex.
I will post my next blood results after the 20th October.
In the mean time, I will monitor my condition a lot closer. Try to walk a little longer each day and attend the hospital's physio gymnasium once a week.
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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.
It is 2 weeks until your appointment. I worry about you trying to exercise more because of your heart.
Could you try 2 week of only eggs, meat & vegetables cooked in coconut oil or water and see if that helps?
Here is an article. The 16 people in this study had advanced metastatic tumors (all different kinds, not multiple myeloma). They could not do any more conventional therapeutic treatments. "5 patients adhered to diet throughout study and had stable disease. It might not work for you, but it has for me.
M Schmidt et al, "Effects of a ketogenic diet on the quality of life in 16 patients with advanced cancer: A pilot trial," Nutrition & Metabolism 2011, 8:54 (full article, open access).
It is 2 weeks until your appointment. I worry about you trying to exercise more because of your heart.
Could you try 2 week of only eggs, meat & vegetables cooked in coconut oil or water and see if that helps?
Here is an article. The 16 people in this study had advanced metastatic tumors (all different kinds, not multiple myeloma). They could not do any more conventional therapeutic treatments. "5 patients adhered to diet throughout study and had stable disease. It might not work for you, but it has for me.
M Schmidt et al, "Effects of a ketogenic diet on the quality of life in 16 patients with advanced cancer: A pilot trial," Nutrition & Metabolism 2011, 8:54 (full article, open access).
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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?
Unfortunately, the results after 2 cycles have not been promising, but we will press on for at least one more month on Revlimid and dexamethasone.
The heart markers Pro BNP have significantly gone up to 845.6 pmol/l and the light chains have gone up to 262. Blood counts are low.
I haven't been able to exercise but I am attending the hospital's gymnasium for cardiac rehabilitation once a week (will increase it to twice a week from this week).
I am not really sure which way and what treatment will be recommended if the current one fails at the end of this cycle.
Has any one out there had similar problem with refractory multiple myeloma / amylodosis?
Any suggestions/advice?
The heart markers Pro BNP have significantly gone up to 845.6 pmol/l and the light chains have gone up to 262. Blood counts are low.
I haven't been able to exercise but I am attending the hospital's gymnasium for cardiac rehabilitation once a week (will increase it to twice a week from this week).
I am not really sure which way and what treatment will be recommended if the current one fails at the end of this cycle.
Has any one out there had similar problem with refractory multiple myeloma / amylodosis?
Any suggestions/advice?
-
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?
I am so sorry, Sam.
I don't know what to say except that I am sorry. I know how hard it can be to have bad news after bad news.
I will say a prayer right now for your doctors to have wisdom to know what to do next.
C
I don't know what to say except that I am sorry. I know how hard it can be to have bad news after bad news.
I will say a prayer right now for your doctors to have wisdom to know what to do next.
C
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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?
Thanks Cathy
I am hopeful that come the end of this cycle I will have some good news. Worst case scenario is that we explore another treatment which I am sure will not be as harsh as the current one.
Hope our prayers are answered.
Sam
I am hopeful that come the end of this cycle I will have some good news. Worst case scenario is that we explore another treatment which I am sure will not be as harsh as the current one.
Hope our prayers are answered.
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?
I hope so, too.
I am copying a comment below what I write here. It is from Dr Rajkumar after one of the news articles he wrote a couple of days ago on this site.
.
He talks about amyloidosis and light chain deposition disease and says those are actually distinctly different from multiple myeloma. It sounds like everyone with multiple myeloma can have abnormal amounts of free light chains, and some people can have amyloidosis or LCDD even if the plasma cells that produce the light chains are not malignant. With AL or LCDD the free light chains form a strange shaped protein which is what causes the damage to our organs. We could have had AL and LCDD without the plasma cells that produce the light chains being malignant, but unfortunately our plasma cells are malignant - so the light chains are very damaging and can be produced in large quantities by our cancerous cells.
I am not completely sure why AL is different from LCDD. I have read that AL can affect heart and other organs and LCDD mostly affects the kidneys. But when I first developed my cancer - before I was diagnosed, I started to lose my hearing and I had to get hearing aids! That was 2 years before I was diagnosed, but it happened at the same time that my kidney numbers started to get out of whack and at the same time I had hyperthyroidism and then hypothyroidism. I once asked my doctor if the light chains could have caused my hearing loss and he said it was possible.
S. Vincent Rajkumar (author) said:
I am copying a comment below what I write here. It is from Dr Rajkumar after one of the news articles he wrote a couple of days ago on this site.
.
He talks about amyloidosis and light chain deposition disease and says those are actually distinctly different from multiple myeloma. It sounds like everyone with multiple myeloma can have abnormal amounts of free light chains, and some people can have amyloidosis or LCDD even if the plasma cells that produce the light chains are not malignant. With AL or LCDD the free light chains form a strange shaped protein which is what causes the damage to our organs. We could have had AL and LCDD without the plasma cells that produce the light chains being malignant, but unfortunately our plasma cells are malignant - so the light chains are very damaging and can be produced in large quantities by our cancerous cells.
I am not completely sure why AL is different from LCDD. I have read that AL can affect heart and other organs and LCDD mostly affects the kidneys. But when I first developed my cancer - before I was diagnosed, I started to lose my hearing and I had to get hearing aids! That was 2 years before I was diagnosed, but it happened at the same time that my kidney numbers started to get out of whack and at the same time I had hyperthyroidism and then hypothyroidism. I once asked my doctor if the light chains could have caused my hearing loss and he said it was possible.
S. Vincent Rajkumar (author) said:
Light chain (AL) amyloidosis and multiple myeloma are both clonal plasma cell disorders but they are different diseases altogether. AL amyloidosis simply means that light chains secreted by plasma cells are forming misfolded protein and causing organ damage; it is a unique disease unto itself and the bone marrow involvement varies in this disease from patient to patient. The plasma cells that are the culprit in AL amyloidosis may or may not be malignant.
Myeloma, on the other hand, is a true malignancy. In order for a patient with AL amyloidosis to be considered as having multiple myeloma (a malignancy) on top of the amyloidosis, they need to meet the criteria for multiple myeloma (just like other patients). The reason is that we do not want to add the label of a cancer / malignancy on patients who do not have it. Based on the new criteria, patients with AL amyloidosis and no CRAB features and no other myeloma defining events will simply be considered as having AL amyloidosis.
27 October 2014 at 5:12
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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?
Did you know that Kim T (who recently went through SCT and posted her progress) said she has amyloidosis, too?
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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?
Hi Sam,
So sorry to hear that Revlimid and dex aren't bringing your numbers down. It may be a little early to say for certain that the combination won't work for you. You may want to give it a little more time. At a minimum, it may keep you stable for a while.
Since it may help some of the others reading this thread and thinking of some potential ideas for you, I've made this quick summary of your situation. Tell me if there are any mistakes and add in any information that's missing.
2009: Diagnosis, age 47, in Australia
Multiple myeloma and amyloidosis with cardiac and kidney involvement
CTD; "good results", but stopped due to PN
(how many cycles?) (what sort of response?)
2012: Relapse
TD, "no luck"
(how many cycles?)
CyBorD for 5 cycles, "no luck"
2013 (November):
Autologous SCT
2014:
Lambda FLCs jumped from 34.33 (May) to 209.55 (August)
M-spike in August: 0.97 g/dL
Late August
Started Revlimid (10 mg) and dex (40 mg / week)
Late September
Revlimid dose increased to 15 mg; dex dose kept the same
I don't have any ideas for you right now on potential next treatment options. I'll have to think about it a bit. As I said, I thought I would put this summary out to help stimulate some discussion of potential options for you.
Given that you're in Sydney, I'm guessing you are under the care of a myeloma specialist. That would be very important given where you are in the course of your disease. There are several members of the International Myeloma Working Group at the Royal Prince Alfred Hospital in Syndey. See the list of IMWG members here:
https://myelomabeacon.org/forum/international-myeloma-working-group-imwg-members-t3514.html
I'll post later today with some additional thoughts.
So sorry to hear that Revlimid and dex aren't bringing your numbers down. It may be a little early to say for certain that the combination won't work for you. You may want to give it a little more time. At a minimum, it may keep you stable for a while.
Since it may help some of the others reading this thread and thinking of some potential ideas for you, I've made this quick summary of your situation. Tell me if there are any mistakes and add in any information that's missing.
2009: Diagnosis, age 47, in Australia
Multiple myeloma and amyloidosis with cardiac and kidney involvement
CTD; "good results", but stopped due to PN
(how many cycles?) (what sort of response?)
2012: Relapse
TD, "no luck"
(how many cycles?)
CyBorD for 5 cycles, "no luck"
2013 (November):
Autologous SCT
2014:
Lambda FLCs jumped from 34.33 (May) to 209.55 (August)
M-spike in August: 0.97 g/dL
Late August
Started Revlimid (10 mg) and dex (40 mg / week)
Late September
Revlimid dose increased to 15 mg; dex dose kept the same
I don't have any ideas for you right now on potential next treatment options. I'll have to think about it a bit. As I said, I thought I would put this summary out to help stimulate some discussion of potential options for you.
Given that you're in Sydney, I'm guessing you are under the care of a myeloma specialist. That would be very important given where you are in the course of your disease. There are several members of the International Myeloma Working Group at the Royal Prince Alfred Hospital in Syndey. See the list of IMWG members here:
https://myelomabeacon.org/forum/international-myeloma-working-group-imwg-members-t3514.html
I'll post later today with some additional thoughts.
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