Many thanks the feedback and query.
I am now taking large doses of prednisone. For the last two weeks, my haemoglobin and platelets are holding and I have had weekly treatments of Velcade without the need for a blood transfusion. Hoping that the Velcade is working and not responsible for breaking down my blood.
Still a wait-and-see, I guess, but hopefully going in a good direction.
Forums
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Ailsa - Name: Ailsa
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 2014
- Age at diagnosis: 53
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blair77 - Who do you know with myeloma?: My husband
- When were you/they diagnosed?: April 2013
- Age at diagnosis: 43
Re: Blood transfusions not working - what's next?
Unfortunately, after three weeks, I had to commence more blood and platelet transfusions. Also been getting edema in legs quite badly.
Got a copy of a blood test and noticed my albumin has dropped to 2.2 from about 3.5 prior to treatment. Not good? Should I raise this with oncologist?
Only on my third round of Velcade. Very difficult path. Stopped taking Somac (Protonix, pantoprazole), as it is being given to me as a preventative. Worried about side effects.
Any advice greatly appreciated. Have asked to switch oncologists.
Got a copy of a blood test and noticed my albumin has dropped to 2.2 from about 3.5 prior to treatment. Not good? Should I raise this with oncologist?
Only on my third round of Velcade. Very difficult path. Stopped taking Somac (Protonix, pantoprazole), as it is being given to me as a preventative. Worried about side effects.
Any advice greatly appreciated. Have asked to switch oncologists.
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Ailsa - Name: Ailsa
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 2014
- Age at diagnosis: 53
Re: Blood transfusions not working - what's next?
Sounds like a difficult situation with some complicated issues.
As you know or at least are learning, multiple myeloma causes bone marrow suppression – decreased production of red cells (measured by the hemoglobin level) as well as low platelets and white cells. Patients who present with significant anemia, or any end organ damage, need to have the myeloma cells killed so that the normal cells can begin to function again and get their blood counts closer to normal.
Hopefully, your doctors have checked your iron, folate, vitamin B12, and TSH levels. These can all contribute to anemia. The situation can be complicated by a number of factors:
If you also have kidney issues, which frequently occur in myeloma patients, a hormone called erythropoietin ("epo") is not being made at appropriate levels, so your bone marrow is not "being told" to make more red cells. This also happens in times of chronic inflammation.
Adding another layer, the medication Velcade can also contribute to the low platelet levels.
Further, as we discussed earlier this week in a posting in a different discussion here in the Beacon forum, autoimmune hemolytic anemia (AIHA) can also be seen with multiple myeloma (again, not the norm).
You may continue to need transfusions of blood and platelets until the myeloma is controlled to a better extent. If it is the third cycle of Velcade (not just third day / dose), you will want to make sure that the myeloma is being controlled. If third dose / day, then continue to be patient. You may want to consider taking an erythropoieten stimulating agent (ESA), such as Procrit or Aranesp, which are medication versions of the epo that I mentioned above.
I also think that it will be very important to double check your GI bleeding source. If not already done, you should get upper and lower endoscopies.
Also, an oncologist and pathologist should re-check the bone marrow biopsy for the possibility of an additional bone marrow malignancy called MDS [myelodysplastic syndrome]. This disorder also does not allow the proper production of white cells, red cells, and platelets. It is another disease of more mature individuals and can happen concomitantly, although very rarely, with multiple myeloma.
I would be careful of stopping meds without discussion with your oncologist. Also, I am not sure why you are avoiding meats and sugar. If you are diabetic, that is ok, but there are no myeloma-related reasons to avoid them.
Lastly, as I am sure that you have heard, it always recommended to try to get to a myeloma expert if possible.
As you know or at least are learning, multiple myeloma causes bone marrow suppression – decreased production of red cells (measured by the hemoglobin level) as well as low platelets and white cells. Patients who present with significant anemia, or any end organ damage, need to have the myeloma cells killed so that the normal cells can begin to function again and get their blood counts closer to normal.
Hopefully, your doctors have checked your iron, folate, vitamin B12, and TSH levels. These can all contribute to anemia. The situation can be complicated by a number of factors:
If you also have kidney issues, which frequently occur in myeloma patients, a hormone called erythropoietin ("epo") is not being made at appropriate levels, so your bone marrow is not "being told" to make more red cells. This also happens in times of chronic inflammation.
Adding another layer, the medication Velcade can also contribute to the low platelet levels.
Further, as we discussed earlier this week in a posting in a different discussion here in the Beacon forum, autoimmune hemolytic anemia (AIHA) can also be seen with multiple myeloma (again, not the norm).
You may continue to need transfusions of blood and platelets until the myeloma is controlled to a better extent. If it is the third cycle of Velcade (not just third day / dose), you will want to make sure that the myeloma is being controlled. If third dose / day, then continue to be patient. You may want to consider taking an erythropoieten stimulating agent (ESA), such as Procrit or Aranesp, which are medication versions of the epo that I mentioned above.
I also think that it will be very important to double check your GI bleeding source. If not already done, you should get upper and lower endoscopies.
Also, an oncologist and pathologist should re-check the bone marrow biopsy for the possibility of an additional bone marrow malignancy called MDS [myelodysplastic syndrome]. This disorder also does not allow the proper production of white cells, red cells, and platelets. It is another disease of more mature individuals and can happen concomitantly, although very rarely, with multiple myeloma.
I would be careful of stopping meds without discussion with your oncologist. Also, I am not sure why you are avoiding meats and sugar. If you are diabetic, that is ok, but there are no myeloma-related reasons to avoid them.
Lastly, as I am sure that you have heard, it always recommended to try to get to a myeloma expert if possible.
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Dr. Ken Shain - Name: Ken Shain, M.D., Ph.D.
Beacon Medical Advisor
Re: Blood transfusions not working - what's next?
Many thanks for your advice, greatly appreciated.
I have been making a concerted effort to eat protein-enriched foods, including red meat, over the last few weeks. Protein levels are increasing, maybe too soon for albumin, but I am having weekly bloods prior to treatment.
I confirm that I have just done the second week in the third course / round.
Stomach issue to be scanned soon.
I have been making a concerted effort to eat protein-enriched foods, including red meat, over the last few weeks. Protein levels are increasing, maybe too soon for albumin, but I am having weekly bloods prior to treatment.
I confirm that I have just done the second week in the third course / round.
Stomach issue to be scanned soon.
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Ailsa - Name: Ailsa
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 2014
- Age at diagnosis: 53
15 posts
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