Hello, this is my first post. I read with interest the discussions and decided to share my case.
I am 47 years old, I have a healthy lifestyle, I have not been sick for the last 20 years.
Last year, I was diagnosed with Multiple Myeloma after surgery to stabilize the spine and taken a biopsy from the tumors in the vertebrae. The operation was done on 11.07.2017, and on 25.07.2017 I went to hematology treatment.
Hemoglobin – 140-155.
15% bone marrow infiltration. There is a scanner, MRI and PET scanner (15.11.2017 – no metabolic active lesions found in the bones, but the old lesions are visible). From 25.07.2017 until now I have been given 9 chemotherapy courses -Velcade, Endoxan, Dexamethasone, on March 19, 2018 begins 10th course.
Upon entry into hematology, respectively after 4 chemotherapy and after 8 chemotherapy, paraprotein was tested in serum and concentrate.
25 July 26 Oct. 26.feb.2018
paraprotein serum 4.3% 2.8% 1.9%
paraprotein conc. 3 g/ l 1.7 g / l 1.3 g / l
IgG IgA IgM
July 26, Jan 4
IgG – 8.13 g / l 7.59 g / l
IgA 0.16 g / l 0.23 g / l
IgM 0.11 g / l 0.24 g / l
The doctors who treat me are not dialogue and I only hear the treatment going well, which is not a satisfactory answer for me.
What I want to ask is whether treatment really works well and whether autologous transplantation is good to do, and at what stage.
I am also a patient. Diagnosed 5 years ago and had my SCT 4 years ago.
Sounds like you need to speak to a haematology specialist, have you thought of asking for a second opinion? This should not cause offence. You may also like to enquire about the extent of any genetic profiling that has been done. This may help to add to the available information.
The Myeloma UK Helpline nurses are very helpful and will be able to offer some advice on the general rules for stem cell transplant. My understanding is that this is generally based on overall fitness and extent of response to first line treatment.
First of all, sounds like you did not have high levels of myeloma cells in your bone marrow in the beginning (15% is not much, I had 65% and I have heard of cases with 90% infitration). Also, your paraprotein levels were quite low, and they have gone down with chemo although slowly. It would be good to talk to your consultant about either changing to a different chemo to get paraprotein levels to zero, or doing SCT, unless you prefer something else of course. Best of luck