Hi everyone,
I am in my 5th cycle of RVD [Revlimid, Velcade, dexamethasone] and responding well. Light chains down to 28. I was anemic on diagnosis (10.2 hemoglobin). Went lower as treatment started ( lowest 8.9) Treated with Procrit [epoetin alfa]. Last dose in cycle 3. During 4th cycle, hemoglobin reached 11.4 but fell during off week to 10.3 Other red blood counts fell similarly.
Even though my light chains are pretty low, I am concerned that it could mean the myeloma is becoming more active. Light chain reading was taken 7/22. Doc does not seem concerned and did not give me procrit. I had 3 Procrit treatments.
Could it be that the effects of the Procrit have worn off? Thanks
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Re: Experiencing anemia while on RVD - what does it mean?
Ellen,
Anemia is something I've been thinking about for the past few days:
"Counteracting anemia", Beacon forum discussion started July 22, 2014.
You may want to review the anemia section in the "Introduction to Myeloma" section of the Berenson Oncology website. A couple of takeaways to consider from the material there:
1. You may want to be conservative and judicious with the use of Procrit.
2. You want to also be monitoring your iron markers (ferritin, TIBC, etc) and discuss the use of iron supplements, if warranted. You may already be doing this?
Anemia is something I've been thinking about for the past few days:
"Counteracting anemia", Beacon forum discussion started July 22, 2014.
You may want to review the anemia section in the "Introduction to Myeloma" section of the Berenson Oncology website. A couple of takeaways to consider from the material there:
1. You may want to be conservative and judicious with the use of Procrit.
2. You want to also be monitoring your iron markers (ferritin, TIBC, etc) and discuss the use of iron supplements, if warranted. You may already be doing this?
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Experiencing anemia while on RVD - what does it mean?
Multibilly, ferritin is ok. Curious about your caution on Procrit. What's that about? My doc is really against supplementation. Will not even let me take a simple multivitamin, which I find annoying. My appetite is not great so I am sure I must have deficiencies.
I know not to take vitamin C because of interaction with Velcade. Only vitamin I am taking per doc is D. Fish oils also. Would love to take folic acid and the other B vitamins to see if it would help with the anemia.
I know not to take vitamin C because of interaction with Velcade. Only vitamin I am taking per doc is D. Fish oils also. Would love to take folic acid and the other B vitamins to see if it would help with the anemia.
Re: Experiencing anemia while on RVD - what does it mean?
Ellen-
What are the WBC and neutrophil counts like? If these are also low, it could be a side effect from the Revlimid that is lowering your blood counts. This happened to me recently after being on Revlimid 15 mg / dex 20 mg for the last 19 months. My doctor put me on a one month rest from the Revlimid, and my counts rebounded back into the normal range again. He has lowered my Revlimid to 10 mg. This week I will have my first follow-up since starting the new level of Revlimid a month ago.
Nancy in Phila
What are the WBC and neutrophil counts like? If these are also low, it could be a side effect from the Revlimid that is lowering your blood counts. This happened to me recently after being on Revlimid 15 mg / dex 20 mg for the last 19 months. My doctor put me on a one month rest from the Revlimid, and my counts rebounded back into the normal range again. He has lowered my Revlimid to 10 mg. This week I will have my first follow-up since starting the new level of Revlimid a month ago.
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Experiencing anemia while on RVD - what does it mean?
Regarding: "Multibilly... Curious about your caution on Procrit. What's that about?"
Per the above link:
"... Recently there’s concern they use of EPO in patients with myeloma and other cancers that perhaps it’s actually speeding up the cancers growth and shorting the survival of cancer patients. There’s studies looking at this, some have shown that’s true, some have not and for that reason you don’t want to go overboard with the use of drugs like Procrit or Aranesp".
Further commentary here:
http://www.rndsystems.com/cb_detail_objectname_SP04_Erythropoietin.aspx
And here:
"Experts Develop Guidelines For Treating Anemia In Multiple Myeloma Patients (IMW 2011)", The Myeloma Beacon, May 23, 2011.
"...A possible side effect of erythropoietin therapy is blood clots in the veins. Studies have also shown that patients receiving erythropoietin therapy without chemotherapy may have an increased risk for disease progression or death"
And here:
http://www.haematologica.org/content/95/11/1803.full
"...The adverse effects of EPO therapy observed in randomized clinical trials involving patients with chronic kidney disease and cancer, such as increased thromboembolic complications, cardiovascular mortality, tumor progression and impaired survival may potentially be related to non-erythropoietic actions of EPO"
Regarding taking supplements like B12 or folic acid, I guess I came to the conclusion from Terry's post on my own anemia thread above (and talking to my GP) that one ought to first test for a specific deficiency before considering a supplement. Have you tested low for these compounds?
After all, what's the point of taking extra B12 or folic acid if one in fact already has good serum levels of these compounds? You'll just end up peeing away the excess. I remember hearing one quote sometime back that given all the unnecessary vitamins that Americans take, that we must have the most expensive urine in the world
Per the above link:
"... Recently there’s concern they use of EPO in patients with myeloma and other cancers that perhaps it’s actually speeding up the cancers growth and shorting the survival of cancer patients. There’s studies looking at this, some have shown that’s true, some have not and for that reason you don’t want to go overboard with the use of drugs like Procrit or Aranesp".
Further commentary here:
http://www.rndsystems.com/cb_detail_objectname_SP04_Erythropoietin.aspx
And here:
"Experts Develop Guidelines For Treating Anemia In Multiple Myeloma Patients (IMW 2011)", The Myeloma Beacon, May 23, 2011.
"...A possible side effect of erythropoietin therapy is blood clots in the veins. Studies have also shown that patients receiving erythropoietin therapy without chemotherapy may have an increased risk for disease progression or death"
And here:
http://www.haematologica.org/content/95/11/1803.full
"...The adverse effects of EPO therapy observed in randomized clinical trials involving patients with chronic kidney disease and cancer, such as increased thromboembolic complications, cardiovascular mortality, tumor progression and impaired survival may potentially be related to non-erythropoietic actions of EPO"
Regarding taking supplements like B12 or folic acid, I guess I came to the conclusion from Terry's post on my own anemia thread above (and talking to my GP) that one ought to first test for a specific deficiency before considering a supplement. Have you tested low for these compounds?
After all, what's the point of taking extra B12 or folic acid if one in fact already has good serum levels of these compounds? You'll just end up peeing away the excess. I remember hearing one quote sometime back that given all the unnecessary vitamins that Americans take, that we must have the most expensive urine in the world
Last edited by Multibilly on Sun Jul 27, 2014 7:57 pm, edited 1 time in total.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Experiencing anemia while on RVD - what does it mean?
Thanks for the info on Procrit, Multibilly. Nancy, white count normal, cannot find neutrophil reading on my test.
Re: Experiencing anemia while on RVD - what does it mean?
Ellen,
Look at your CBC test. There will be an entry in there called WBC or White Blood Cells. Under WBC there should be another entry that will be labeled something like "NEU %". You should also have a section close by that is labeled something like "NEU ANC" (absolute neutrophil count). NEU % tells you what percentage of your white blood cells are neutrophils (there are 5 types of white blood cells that are measured by the CBC...neutrophils are just one type). NEU ANC tells you how many total neutrophils you actually have in a given volume of blood.
Hope this helps.
Look at your CBC test. There will be an entry in there called WBC or White Blood Cells. Under WBC there should be another entry that will be labeled something like "NEU %". You should also have a section close by that is labeled something like "NEU ANC" (absolute neutrophil count). NEU % tells you what percentage of your white blood cells are neutrophils (there are 5 types of white blood cells that are measured by the CBC...neutrophils are just one type). NEU ANC tells you how many total neutrophils you actually have in a given volume of blood.
Hope this helps.
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Experiencing anemia while on RVD - what does it mean?
My WBC has always been in the normal range. Last ANC reading was also normal. My CBC does not have a line for neutrophils unless I am missing it. Thanks.
Re: Experiencing anemia while on RVD - what does it mean?
Hello Ellen,
The most valuable tests that we have to measure progress or failure in the treatment of multiple myeloma (other than bone marrow biopsy) are the SPEP, serum free light chains, and the 24-hour urine (UPEP). If your light chains have fallen significantly and are staying low, then it is unlikely that the myeloma is returning. I am assuming that you do not have an elevated SPEP or m-spike because that result would be very valuable to know as well. The units on the free light chains and the kappa/lambda ratio are important to know as well ... the free light chains chains are reported as either mg/l or mg/dL.
You are getting one of the most effective treatments we have, RVD. All of the best drugs in a triple combination.
Anemia is common with myeloma, Revlimid, and RVD. In general, patients feel pretty good, unless their hemoglobin falls below 9-10, so yours is fine. Procrit takes multiple treatments to work and therefore I doubt if the 3 treatments you have gotten so far had much of an effect.
Based on the information we have, it sounds like you are responding and have some mild to moderate anemia. I generally recommend 4-6 cycles of treatment to begin with and then a reassessment of how the patient is responding, etc. If your myeloma numbers are continuing to fall, then continue the RVD as tolerated. If the numbers have leveled off, then consider a transplant or maintenance treatment.
The most valuable tests that we have to measure progress or failure in the treatment of multiple myeloma (other than bone marrow biopsy) are the SPEP, serum free light chains, and the 24-hour urine (UPEP). If your light chains have fallen significantly and are staying low, then it is unlikely that the myeloma is returning. I am assuming that you do not have an elevated SPEP or m-spike because that result would be very valuable to know as well. The units on the free light chains and the kappa/lambda ratio are important to know as well ... the free light chains chains are reported as either mg/l or mg/dL.
You are getting one of the most effective treatments we have, RVD. All of the best drugs in a triple combination.
Anemia is common with myeloma, Revlimid, and RVD. In general, patients feel pretty good, unless their hemoglobin falls below 9-10, so yours is fine. Procrit takes multiple treatments to work and therefore I doubt if the 3 treatments you have gotten so far had much of an effect.
Based on the information we have, it sounds like you are responding and have some mild to moderate anemia. I generally recommend 4-6 cycles of treatment to begin with and then a reassessment of how the patient is responding, etc. If your myeloma numbers are continuing to fall, then continue the RVD as tolerated. If the numbers have leveled off, then consider a transplant or maintenance treatment.
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Dr. Edward Libby - Name: Edward Libby, M.D.
Beacon Medical Advisor
Re: Experiencing anemia while on RVD - what does it mean?
Thank you Dr. Libby. I never had much of an m spike. Before I began treatment, my light chains were 12000 ( yikes). My m spike was 0.4 g/dL. And it disappeared during my first cycle. I have IgA kappa myeloma. Light chains were 28 after 4 cycles of RVD. Ratio kappa / lambda is about 2.0. My oncologist is giving me at least one more cycle to see if we can get light chains any lower before stem cell transplant .
Thank you again for your comments. You are very valuable for the myeloma community.
Thank you again for your comments. You are very valuable for the myeloma community.
10 posts
• Page 1 of 1