My mother was diagnosed with multiple myeloma about a month ago, after not getting over the flu. She had renal failure. Now she is on chemo and does dialysis thrice weekly. Her hemoglobin count dropped; she got anemia and thus needed a blood transfusion recently.
Chemo (since it attacks all rapidly-dividing cells, including cells that turn into red blood cells), multiple myeloma, or both can cause anemia, and 97% of multiple myeloma patients have anemia at some point.
Since the chemo is reducing her plasma cell count, what is the worst that could happen by stopping chemo and seeking alternative treatment?
From the UpToDate article on multiple myeloma (http://www.uptodate.com/contents/multiple-myeloma-treatment-beyond-the-basics), chemo seems very ineffective:
"In most people, chemotherapy partially controls multiple myeloma; rarely, chemotherapy leads to complete remission."
And transplantation, too, is ineffective, plus having many limitations and side-effects:
"Transplantation, when successful, prolongs survival, leads to a remission, and, infrequently, cures multiple myeloma. However, transplantation has several limitations. The high-dose chemotherapy given before transplantation usually fails to kill all of the plasma cells, allowing the condition to relapse after transplantation. Such treatment also puts the patient at risk for serious infections and bleeding, which can be fatal. "
(UpToDate supposedly is used by 700,000+ physicians worldwide, thus it's not alternative medicine.)
Also, my wife's aunt was completely bedridden because of her bone marrow cancer chemo treatment, probably due to anemia, yet when she decided to stop chemo and seek alternative care, her health improved enormously.
Thanks in advance for the advice.
Forums
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Geremia - Who do you know with myeloma?: mother
- When were you/they diagnosed?: 1/30/2014
- Age at diagnosis: 60
Re: Why not stop chemo and seek alternative treatment?
Hi Geremia,
Thanks for the post and am sorry to hear about your mother's diagnosis. Any advice I have would be to seek out a myeloma specialist and to get onto anti-myeloma treatments. She need not have a stem cell transplant, there are other treatments too that are tolerable. If recommended, she could get her stem cells harvested, after firstly bringing down the cancer cell counts to a minimum. Then she could decide later about any transplant.
There are such good treatments available now, compared to even a decade ago, that it would be a shame not to try to treat myeloma that way, in my opinion! I certainly benefitted greatly from receiving a variety of myeloma treatment therapies.
Good luck to you and your mother.
Thanks for the post and am sorry to hear about your mother's diagnosis. Any advice I have would be to seek out a myeloma specialist and to get onto anti-myeloma treatments. She need not have a stem cell transplant, there are other treatments too that are tolerable. If recommended, she could get her stem cells harvested, after firstly bringing down the cancer cell counts to a minimum. Then she could decide later about any transplant.
There are such good treatments available now, compared to even a decade ago, that it would be a shame not to try to treat myeloma that way, in my opinion! I certainly benefitted greatly from receiving a variety of myeloma treatment therapies.
Good luck to you and your mother.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Why not stop chemo and seek alternative treatment?
Yes, getting the cell counts down to normal is a good goal to set.
Wow, I did not know the treatments were advancing so rapidly.
Which ones did you receive, may I ask?
Also, do you know anyone who stopped chemo, perhaps even before the plasma cell counts dropped down to normal levels?
Wow, I did not know the treatments were advancing so rapidly.
Which ones did you receive, may I ask?
Also, do you know anyone who stopped chemo, perhaps even before the plasma cell counts dropped down to normal levels?
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Geremia - Who do you know with myeloma?: mother
- When were you/they diagnosed?: 1/30/2014
- Age at diagnosis: 60
Re: Why not stop chemo and seek alternative treatment?
I'm sorry to hear your mother is ill. I hope that whatever treatment strategy you choose, it will work out well!
These days, a rather sizable number of myeloma patients DO achieve complete remission with "chemotherapy" and/or stem cell transplants. Another large group achieve either very good partial response/remission and retain stable disease. So, I'm not really sure what that website means about chemo rarely leads to complete remission. Indeed, many people these days opt for chemo instead of stem cell transplant, BECAUSE it can achieve such fantastic results, depending on the risk stratification of the myeloma. There are many really fantastic articles and posts on this on the site. I would really recommend that you read them.
You can of course seek alternative treatment, but there, we only hear of anecdotes of success, and not so much actual studies. So, in this regard, at least for me, some amount success is better than not really having a clue if it's going to be successful at all. That is not to say that you should not incorporate a good diet and other good health practices.
These days, a rather sizable number of myeloma patients DO achieve complete remission with "chemotherapy" and/or stem cell transplants. Another large group achieve either very good partial response/remission and retain stable disease. So, I'm not really sure what that website means about chemo rarely leads to complete remission. Indeed, many people these days opt for chemo instead of stem cell transplant, BECAUSE it can achieve such fantastic results, depending on the risk stratification of the myeloma. There are many really fantastic articles and posts on this on the site. I would really recommend that you read them.
You can of course seek alternative treatment, but there, we only hear of anecdotes of success, and not so much actual studies. So, in this regard, at least for me, some amount success is better than not really having a clue if it's going to be successful at all. That is not to say that you should not incorporate a good diet and other good health practices.
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dnalex - Name: Alex N.
- Who do you know with myeloma?: mother
- When were you/they diagnosed?: 2007
- Age at diagnosis: 56
Re: Why not stop chemo and seek alternative treatment?
Hi Geremia, My treatments started in 2009, and went on for about 20 months. I had treatment with Velcade plus dexamethasone, which brought me to a very good partial remission. Then i had an auto stem cell transplant, and after waiting the 100 days out from that, received one year of treatments with Revlimid. All of this brought me into a remission. Even since 2009, progress and changes have been made, and my treatments are probably not even the norm any more. I live in Canada, and may not be in the same country as your mother, but I hope that good treatments are available to you also. I also received extensive treatment with bone building medications, pamidronate, to help my injured bones to heal. Honestly, i don't even think I would be here typing to you were it not for all of this...and I am close to your mother's age also.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Why not stop chemo and seek alternative treatment?
Greetings from gray and wet Seattle Geremia,
I am truly sorry that your mother has been diagnosed with this difficult disease. There is hope though and effective treatment is available for most patients.
You have pointed out an interesting statement in the UpToDate patient information guide. I looked at it carefully and I see how this could be interpreted in the manner you did. What the authors meant to convey is that the older myeloma drugs that are classified strictly as chemotherapy (cyclophosphamide, melphalan, doxorubicin, vincristine, Doxil) can rarely get a patient to a complete remission when used alone. On the other hand the "new" or "novel" drugs like Revlimid and Velcade are frequently able to get a patient into remission. This is also true when you combine the older "chemotherapy" drugs with the "novel agents".
So in 2014 perhaps 50-70% of patients can achieve a complete remission with various drug combinations that include the new agents.
Patients in renal failure all have anemia . Although the renal failure is due to the myeloma..... the anemia is due to the renal failure. The chemotherapy may be contributing as well but the contribution of the chemo to the anemia should decrease as the myeloma gets under control.
I did not find a comment in the UpToDate patient guidelines that transplantation is ineffective. In fact the authors noted that stem cell transplantation in selected patients is associated with an extra year of life. It is true that there are limitations to stem cell transplantation and there can be major side effects, but patients' lives can be prolonged with a stem cell transplant and patients may have years of remission after a stem cell transplant. It is not curative but still a powerful treatment modality for multiple myeloma in those patients who are candidates.
Untreated multiple myeloma will give a patient a short life expectancy of perhaps 1-2 years. There is excellent scientific data demonstrating the efficacy and life-prolonging benefit of current anti-myeloma treatments. There is little research supporting the primary use of alternative medicines to treat this disease.
I wish your mother the best in her journey with this challenging disease. You are asking thoughtful and good questions. Thank you for sharing your concerns with the Myeloma Beacon!
I am truly sorry that your mother has been diagnosed with this difficult disease. There is hope though and effective treatment is available for most patients.
You have pointed out an interesting statement in the UpToDate patient information guide. I looked at it carefully and I see how this could be interpreted in the manner you did. What the authors meant to convey is that the older myeloma drugs that are classified strictly as chemotherapy (cyclophosphamide, melphalan, doxorubicin, vincristine, Doxil) can rarely get a patient to a complete remission when used alone. On the other hand the "new" or "novel" drugs like Revlimid and Velcade are frequently able to get a patient into remission. This is also true when you combine the older "chemotherapy" drugs with the "novel agents".
So in 2014 perhaps 50-70% of patients can achieve a complete remission with various drug combinations that include the new agents.
Patients in renal failure all have anemia . Although the renal failure is due to the myeloma..... the anemia is due to the renal failure. The chemotherapy may be contributing as well but the contribution of the chemo to the anemia should decrease as the myeloma gets under control.
I did not find a comment in the UpToDate patient guidelines that transplantation is ineffective. In fact the authors noted that stem cell transplantation in selected patients is associated with an extra year of life. It is true that there are limitations to stem cell transplantation and there can be major side effects, but patients' lives can be prolonged with a stem cell transplant and patients may have years of remission after a stem cell transplant. It is not curative but still a powerful treatment modality for multiple myeloma in those patients who are candidates.
Untreated multiple myeloma will give a patient a short life expectancy of perhaps 1-2 years. There is excellent scientific data demonstrating the efficacy and life-prolonging benefit of current anti-myeloma treatments. There is little research supporting the primary use of alternative medicines to treat this disease.
I wish your mother the best in her journey with this challenging disease. You are asking thoughtful and good questions. Thank you for sharing your concerns with the Myeloma Beacon!
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Dr. Edward Libby - Name: Edward Libby, M.D.
Beacon Medical Advisor
Re: Why not stop chemo and seek alternative treatment?
Dr. Edward Libby wrote: "Patients in renal failure all have anemia . Although the renal failure is due to the myeloma..... the anemia is due to the renal failure. The chemotherapy may be contributing as well but the contribution of the chemo to the anemia should decrease as the myeloma gets under control."
May I ask the mechanism by which anemia occurs in multiple myeloma patients. Is there something in the kidneys that is blocked or hindered because of the anemia that leads to anemia? What are the chances of renal recovery and/or anemia recovery after multiple myeloma patients go through therapy and achieve partial or complete remission?
May I ask the mechanism by which anemia occurs in multiple myeloma patients. Is there something in the kidneys that is blocked or hindered because of the anemia that leads to anemia? What are the chances of renal recovery and/or anemia recovery after multiple myeloma patients go through therapy and achieve partial or complete remission?
Re: Why not stop chemo and seek alternative treatment?
Hello,
The main explanation for anemia in myeloma patients is that the myeloma crowds out normal blood forming cells in the bone marrow. Once the myeloma is under control and recedes the normal cells will fill up the marrow again and blood counts will return to normal levels. Anemia should improve to normal or near normal levels in most myeloma patients with treatment.
The hormone erythropoetin stimulates the production of red blood cells by the bone marrow. Erythropoeitin is manufactured by the kidneys. If the kidneys fail they stop making erythropoetin and anemia occurs. Myeloma patients with kidney failure have a fair chance at regaining their kidney function with early aggressive treatment. Velcade (bortezomib) is the preferred agent for renal failure in newly diagnosed myeloma. It seems to give the best chance of recovering kidney function. Up to 75% of patients can have improvement ( but not necessarily a return to normal) in their renal function when treated with Velcade at diagnosis.
The main explanation for anemia in myeloma patients is that the myeloma crowds out normal blood forming cells in the bone marrow. Once the myeloma is under control and recedes the normal cells will fill up the marrow again and blood counts will return to normal levels. Anemia should improve to normal or near normal levels in most myeloma patients with treatment.
The hormone erythropoetin stimulates the production of red blood cells by the bone marrow. Erythropoeitin is manufactured by the kidneys. If the kidneys fail they stop making erythropoetin and anemia occurs. Myeloma patients with kidney failure have a fair chance at regaining their kidney function with early aggressive treatment. Velcade (bortezomib) is the preferred agent for renal failure in newly diagnosed myeloma. It seems to give the best chance of recovering kidney function. Up to 75% of patients can have improvement ( but not necessarily a return to normal) in their renal function when treated with Velcade at diagnosis.
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Dr. Edward Libby - Name: Edward Libby, M.D.
Beacon Medical Advisor
Re: Why not stop chemo and seek alternative treatment?
What Dr. Libby described was my case when I was first diagnosed with myeloma. I was admitted to the hospital just a few days after my first bone marrow biopsy and diagnosis of myeloma with kidney failure from high calcium. Velcade to fight the myeloma and Aredia to lower calcium was started and my kidneys were saved and made a full recovery. No promises were made that there would be any kind of recovery though, it was uncertain.
I believe that if I had just waited a day more before going to the ER that it may have gone the other way. Thankfully I knew I had myeloma and to get into the ER if anything did not seem right. These drugs can work and early diagnosis can make a big difference in outcome.
I believe that if I had just waited a day more before going to the ER that it may have gone the other way. Thankfully I knew I had myeloma and to get into the ER if anything did not seem right. These drugs can work and early diagnosis can make a big difference in outcome.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Why not stop chemo and seek alternative treatment?
Geremia, just for your information, I only took Revlimid at 10 mg. for 21 days for about 4 months since diagnosis. I was diagnosed before Christmas of 2012. It has been 14 months since diagnosis and I am not on any drugs or chemo. Never took Dex. I am using alternative treatments. I am taking pancreatic enzymes. I am using the Dr. Gonzalez's protocol. It has been successful for Multiple Myeloma. So you can treat it with out chemo. I am doing well. I have IgA and 4;14 translocation and 13 deletion. Started this protocol in October. Living life to the fullest.
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