i am wondering if someone was in the same boat as in my subject line and what options were they offered by the doctor.
In my case, i was found to have multiple myeloma while checking for back pain. my hemoglobin was quite low 50 vs min 140 (normal) and was declared anemic. I do experience fatigue. as a result i was given blood to raise the hemoglobin level to about 85.
Following bone marrow biopsy, it was found that the plasma level in my bone marrow is spread in some areas to 85% vs 5% (normal). Also the serum free light lamda is quite high. So my anemia was found to be related to mu multiple myeloma condition
My kidney function is normal and so are my bones.
The doctor suggested one way for me only and would want me to start immediately: To start a treatment that would span few month which will end up in an autologous stem cell transplantation. Since my only symptom is anemia, I am hesitant to start the chemo therapy with its promise of remission but also will leave significant collateral damage and probably I will relapse later to a much damaged body due to the previous chemo done. Basically i am questioning why the urgency in starting the treatment now.
I am wondering if someone was in a close situation like me and whether they were given other choices before starting immediately with chemotherapy. Also is there a way to increase the hemoglobin level naturally with food or other supplement (knowing that it is caused by my multiple myeloma)
Thanks for all your thoughts and responses
Forums
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orchid - Name: orchid
- Who do you know with myeloma?: brother
- When were you/they diagnosed?: dec 27 2013
- Age at diagnosis: 45
Re: Multiple myeloma with anemia as only symptom
Hi, treatment is initiated when someone develops CRAB (high calcium, renal issues, anemia or bone lesions) issues related to myeloma. In your case, the plasma cells have increased to the point where they fill up 85% of the marrow space. Normal blood cell production can no longer take place because there is no room left in the marrow space. Thus, your red blood cell count plummeted causing an extremely low hemoglobin of 5.0 (US units). This latter figure is life threatening as I am sure you know. I would imagine your white blood count and platelet count was also affected given that level of plasma cell infiltration.
There is no supplement which can boost your hemoglobin in the face of your level of plasma cell infiltration. Your level of anemia is life threatening and needs to be dealt with quickly. If you do nothing, you will need more and more transfusions. I was in your shoes last April when I had a pulmonary embolism and my hemoglobin dropped to 9.0. I needed to start treatment ASAP. I had 80% plasma cell infiltration. I live in the US and entered a clinical trial using carfilzomib for 8 months. I chose not to have an upfront SCT and I had a good response. I did have my stem cells harvested for later use. Perhaps, there are clinical trials in Quebec which you could enter that don't involve upfront stem cell transplants. Anyway, good luck and I wish you the best.
There is no supplement which can boost your hemoglobin in the face of your level of plasma cell infiltration. Your level of anemia is life threatening and needs to be dealt with quickly. If you do nothing, you will need more and more transfusions. I was in your shoes last April when I had a pulmonary embolism and my hemoglobin dropped to 9.0. I needed to start treatment ASAP. I had 80% plasma cell infiltration. I live in the US and entered a clinical trial using carfilzomib for 8 months. I chose not to have an upfront SCT and I had a good response. I did have my stem cells harvested for later use. Perhaps, there are clinical trials in Quebec which you could enter that don't involve upfront stem cell transplants. Anyway, good luck and I wish you the best.
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terryl1 - Name: Terry
- Who do you know with myeloma?: self
- When were you/they diagnosed?: August 10, 2011
- Age at diagnosis: 49
Re: Multiple myeloma with anemia as only symptom
Much appreciated Terry!
What is carfilzomib promise to do and is it a ChemoTherapy?
What is carfilzomib promise to do and is it a ChemoTherapy?
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orchid - Name: orchid
- Who do you know with myeloma?: brother
- When were you/they diagnosed?: dec 27 2013
- Age at diagnosis: 45
Re: Multiple myeloma with anemia as only symptom
Kyprolis (carfilzomib) is a anti-myeloma treatment that is in the same class of therapies as Velcade (bortezomib). It is not yet approved in Canada, however, for use outside of clinical trials.
Speaking of clinical trials, here is a list of clinical trials open to multiple myeloma patients and with locations in Quebec.
http://clinicaltrials.gov/ct2/results?recr=Open&cond=myeloma&state1=NA%3ACA%3AQC
As you will see, several are oriented to newly diagnosed patients and offer the opportunity to be treated with several new drugs that are not yet approved in Canada for use outside of clinical trials (e.g., Kyprolis, MLN9708 (ixazomib) -- another drug similar to Velcade, and elotuzumab).
Speaking of clinical trials, here is a list of clinical trials open to multiple myeloma patients and with locations in Quebec.
http://clinicaltrials.gov/ct2/results?recr=Open&cond=myeloma&state1=NA%3ACA%3AQC
As you will see, several are oriented to newly diagnosed patients and offer the opportunity to be treated with several new drugs that are not yet approved in Canada for use outside of clinical trials (e.g., Kyprolis, MLN9708 (ixazomib) -- another drug similar to Velcade, and elotuzumab).
Re: Multiple myeloma with anemia as only symptom
Hi Orchid, You didn't mention the level of monoclonal proteins in your blood as determined by protein electrophoresis. They are probably also above safe ranges, unless you are a 'non-secretory' patient who is tracked primarily by the serum free light chain test.
From what I have gathered (and I am not a doctor) the large percentage of mutant plasma cells in your bone marrow are crowding out the good blood cells, such as the red and white cells. This is causing you not only anemia, but may be lowering your immunity as well. The mutant plasma cells are cancer cells, and can be killed by various chemotherapies. Many people on this forum have taken chemotherapy, and then stopped short of doing a stem cell transplant, leaving that option for later perhaps.
If myeloma gets out of control it can affect your kidneys, bones and other organs. It would seem that you have an opportunity now to get it treated before it causes a lot of damage! Good luck to you.
My 'induction chemo' was with Velcade and Dex, in Alberta, but that was 4 1/2 years ago and I am probably out of date with what might be offered newly diagnosed patients now. It worked very well for me though.
From what I have gathered (and I am not a doctor) the large percentage of mutant plasma cells in your bone marrow are crowding out the good blood cells, such as the red and white cells. This is causing you not only anemia, but may be lowering your immunity as well. The mutant plasma cells are cancer cells, and can be killed by various chemotherapies. Many people on this forum have taken chemotherapy, and then stopped short of doing a stem cell transplant, leaving that option for later perhaps.
If myeloma gets out of control it can affect your kidneys, bones and other organs. It would seem that you have an opportunity now to get it treated before it causes a lot of damage! Good luck to you.
My 'induction chemo' was with Velcade and Dex, in Alberta, but that was 4 1/2 years ago and I am probably out of date with what might be offered newly diagnosed patients now. It worked very well for me though.
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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: Multiple myeloma with anemia as only symptom
Hi Orchid,
The other posts that suggest you start some chemo treatment ASAP are correct. I would also suggest trying to find a specialist that works a lot with myeloma patients every day, if your doctor isn't already one. This is probably the single most important thing that you can be doing for yourself.
I'd also take the time to start to educate yourself on whether you want to opt for a transplant or not down the road. As you dig more into this forum, you will find various people on both sides of this debate and there is always a lot of healthy and respectful discussion that goes on regarding this topic. You will also find doctors that are divided on the subject.
You will find a lot of great experience on this site and many great folks that are more than willing to help you out as you go down this path.
Best of luck to you.
The other posts that suggest you start some chemo treatment ASAP are correct. I would also suggest trying to find a specialist that works a lot with myeloma patients every day, if your doctor isn't already one. This is probably the single most important thing that you can be doing for yourself.
I'd also take the time to start to educate yourself on whether you want to opt for a transplant or not down the road. As you dig more into this forum, you will find various people on both sides of this debate and there is always a lot of healthy and respectful discussion that goes on regarding this topic. You will also find doctors that are divided on the subject.
You will find a lot of great experience on this site and many great folks that are more than willing to help you out as you go down this path.
Best of luck to you.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Multiple myeloma with anemia as only symptom
Orchid-
From what you posted I get the sense that you are thinking of the chemo treatment for Myeloma to be the same as for most of the solid tumor cancers that we hear about. The initial treatments for Myeloma usually include one, or a combination, of Revlimid, Velcade, Dexamethasone, Krypolis, pomalidomide and/or Thalidomide. Although each of these drugs has its own complex of side effects, they aren't as damaging as the chemo used for cancers such as breast cancer. You don't lose your hair and rarely is there any nausea. Other stronger more traditional cancer drugs are used if these don't have an effect. If, in the future, you would decide to have a stem cell transplant then the stronger drugs Cytoxan and Melphalan are used to wipe out your bone marrow prior to reinfusing your stem cells.
With your level of anemia and the amount of cancer cells in your bone marrow, treatment at this point is quite important so that you don't end up with severe damage to your body and possible death. The majority of us have gone through many treatments with good responses to the treatments and are continuing to live fairly normal lives - working, traveling, etc. Receiving treatment is the only way to possibly avoid the kidney and bone damage that can develop from letting the Myeloma go untreated.
Please don't wait to attack the Myeloma now while anemia seems to be your only major issue with the disease. As Terry1 has said, anemia is nothing to play around with. The red blood cells carry oxygen to all of the cells of your body so that they can function efficiently. With your level of anemia your cells are starving for oxygen and causing you harm.
Nancy in Phila
From what you posted I get the sense that you are thinking of the chemo treatment for Myeloma to be the same as for most of the solid tumor cancers that we hear about. The initial treatments for Myeloma usually include one, or a combination, of Revlimid, Velcade, Dexamethasone, Krypolis, pomalidomide and/or Thalidomide. Although each of these drugs has its own complex of side effects, they aren't as damaging as the chemo used for cancers such as breast cancer. You don't lose your hair and rarely is there any nausea. Other stronger more traditional cancer drugs are used if these don't have an effect. If, in the future, you would decide to have a stem cell transplant then the stronger drugs Cytoxan and Melphalan are used to wipe out your bone marrow prior to reinfusing your stem cells.
With your level of anemia and the amount of cancer cells in your bone marrow, treatment at this point is quite important so that you don't end up with severe damage to your body and possible death. The majority of us have gone through many treatments with good responses to the treatments and are continuing to live fairly normal lives - working, traveling, etc. Receiving treatment is the only way to possibly avoid the kidney and bone damage that can develop from letting the Myeloma go untreated.
Please don't wait to attack the Myeloma now while anemia seems to be your only major issue with the disease. As Terry1 has said, anemia is nothing to play around with. The red blood cells carry oxygen to all of the cells of your body so that they can function efficiently. With your level of anemia your cells are starving for oxygen and causing you harm.
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: Multiple myeloma with anemia as only symptom
Anemia may be the only CRAB symptom you have at this point but with multiple myeloma things can happen quickly. You could develop a clot (common with myeloma due to the out of whack blood counts), a serious infection, or a bone damage as a result of the high level of myeloma cells in your bone marrow (85% is quite high!). I Don't think you should wait for things to go from bad to worse, the initial treatment for multiple myeloma is fairly well tolerated now, and you won't loose your hair or anything yet.
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lys2012 - Name: Alyssa
- When were you/they diagnosed?: 2010, Toronto, Canada
- Age at diagnosis: 32
Re: Multiple myeloma with anemia as only symptom
Hi, Orchid,
I am not a myeloma patient, but my mother was. She had all symptoms, but her doctor told her that it's just anemia and did not go further until she was very sick. And this delay killed her. So, you should start treatment as soon as possible. Now treatment is different from years ago and that helps with side effects.
In your comments your mentioned that your brother has this cancer. So, what is his advice and treatment options? Or, I just misunderstood whole comment.
I am not a myeloma patient, but my mother was. She had all symptoms, but her doctor told her that it's just anemia and did not go further until she was very sick. And this delay killed her. So, you should start treatment as soon as possible. Now treatment is different from years ago and that helps with side effects.
In your comments your mentioned that your brother has this cancer. So, what is his advice and treatment options? Or, I just misunderstood whole comment.
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nomm
Re: Multiple myeloma with anemia as only symptom
If I've learned anything from this site, my own experience and that of my sister's it is that multiple myeloma does not follow any set pattern. I would ignore the fact that you don't have 100% of the symptoms and concentrate on treatment.
You know you have one serious symptom and that is all you need to fear.
You know you have one serious symptom and that is all you need to fear.
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Wayne K - Name: Wayne
- Who do you know with myeloma?: Myself, my sister who passed in '95
- When were you/they diagnosed?: 03/09
- Age at diagnosis: 70
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