My husband was diagnosed with multiple myeloma in June 2014 at the age of 47. He was very sick on ITU (intensive treatment unit) at the time, with renal failure requiring haemofiltration, widespread bony disease, and 2 plasmacytomas. (Bone marrow was 95% cancerous plasma cells, but cytogenetic testing failed.) We live in the UK.
He was treated with 8 cycles of thalidomide, dexamethasone and Velcade after which he received an autologous stem cell transplant (SCT) in February 2015. He had radiotherapy for a plasmacytoma before the SCT and more recently for osteolytic lesions in his hip. He did not receive any maintenance chemotherapy.
He relapsed 4 weeks ago (6 months after SCT) with secondary plasma cell leukaemia, apparently the most aggressive form of multiple myeloma. He is being treated with bortezomib (Velcade), dexamethasone and lenalidomide (Revlimid), to which he is responding. The prognosis is measured in months.
I know there are other drugs available on research basis, but his platelets are very low and apparently this is a contraindication for entering into any studies. He is receiving platelet transfusions every 2 to 3 days (Velcade treatment requires his platelets to be at a certain level.) Red blood cells are not too bad. White cells have also dropped, but he responded to growth factor and is now producing more neutrophils.
His renal function has always been suboptimal but ok with plenty of fluids and the occasional treatment of a high potassium.
Is he receiving the best possible / available treatment?
I would be grateful for your responses.
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Re: Plasma cell leukemia 6 months post SCT - options?
Dear krieselse
I am very sorry to hear of your husbands journey with multiple myeloma and plasma cell leukaemia.
Like you I am in the UK and the treatment your husband received for the initial treatment of the myeloma was a common one. The fact that he is responding to the current treatment does suggest his doctors are working with drug combinations that have managed to get the disease into some control.
The Revlimid is a known myelosupressive drug so the drop in platelets, white cells etc.does happen and is monitored and supportive care instituted as has been the case with your husband. It does look to me that the doctors treating him are doing what is needed, but because of the myelosupression with the current regime they cannot be too aggressive with the treatment.
You could seek a second opinion, as that at least will re-assure you what can be done is being done. Clinical trials do have strict entry criteria and whether a suitable trial is available at the required time is a matter of luck. But without a second opinion you will not know what further avenues there might be for your husband.
The best to your husband and yourself with this journey.
Edna
I am very sorry to hear of your husbands journey with multiple myeloma and plasma cell leukaemia.
Like you I am in the UK and the treatment your husband received for the initial treatment of the myeloma was a common one. The fact that he is responding to the current treatment does suggest his doctors are working with drug combinations that have managed to get the disease into some control.
The Revlimid is a known myelosupressive drug so the drop in platelets, white cells etc.does happen and is monitored and supportive care instituted as has been the case with your husband. It does look to me that the doctors treating him are doing what is needed, but because of the myelosupression with the current regime they cannot be too aggressive with the treatment.
You could seek a second opinion, as that at least will re-assure you what can be done is being done. Clinical trials do have strict entry criteria and whether a suitable trial is available at the required time is a matter of luck. But without a second opinion you will not know what further avenues there might be for your husband.
The best to your husband and yourself with this journey.
Edna
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