[chrisskaParticipant]

Hi group , ive had first 4 months of dvt with dara,i finished that with no sickness at all,my light chains at the start was 14730 to 0.1 good cells, at the highest they were 21730 to 0.1 ,i finished the treatment at the end of october, i was given another pelvic biopsy ,my light chains had dropped down to 405,to 0.1 ,wich i was so glad about , i was refered to manni royal 7 weeks later , so ive gone 7 weeks now with no treatment, been to see dr crea at manchester royal my light chains are back up to over 1200 ,im feeling very tired again,and dr crea wants me to have another block of chemo to get my light chains down before stem cell collection,but that will only leave 2 other types of chemo available to me once stem cell fails , so my consultant at bolton has been intouch with the christie hospital to see what they say , so ive been left up in the air not knowing whats happening next , in my eye opinion i dont see the point of having stem cell transplant while my cancer count has shot up again , but i dont know what the cut off point on cell count before the procedure would be waisted , thanks ,

[mulberryParticipant]

Hi Chrisska
Sadly your scenario isn’t that uncommon, ie as soon as induction treatment ends, myeloma returns, sometimes slowly, but sometimes dramatically like yours.
Its helpful that your Dr is seeking advice from the experts at the Christie who will have had plenty of experience of this.
Don’t worry unduly about needing a second line of treatment if you do, before SCT. If you need it, you do. By the time you need 4th line treatments new ones may well be available, research is moving on so quickly.
A close myeloma friend of mine ended up having 3 lines of treatment before having a SCT. But the SCT then worked (despite drs not being certain it would) and my friend was put on the same 3rd line drug as maintenance. My friend has been in remission having a good quality of life (lots of foreign travel included) for a couple of years so far.
I know of several other patients who’ve been given 2nd line treatments after an experience like yours, who’ve then moved quickly onto SCT without the delay of several months that many of us have, and this has worked for them.

I suspect that one day it will be possible to distinguish at diagnosis those of us who are likely to have this issue. At the moment only a very limited number of 5 or 6 higher risk markers are looked for, but it’s known that there are 63 driver genes that can be associated with myeloma. Myeloma is not really one disease, but a collection of very rare plasma cell cancers, and we are living with it at a time when medical science is still trying to differentiate between them. The good thing is that real progress is being made identifying new types of treatment that work, at least buying extra time for us.

[Author]

Posts