Dear Clare,
I hope I can help you as I have been through very similar. I was diagnosed in January 2017 when I was 57. I was initially diagnosed with a tumour behind my right eye, which turned out to be Non Hodgkin’s Lymphoma (another blood cancer), for which I received some radiotherapy. It was during the work up for this that they discovered I also had Myeloma. Treatment for the Myeloma began as soon as I had finished the radiotherapy. I started on VTD, 2 cycles, didn’t work and light chains increased. Went on to CTD for 3 cycles and light chains increased. My local haematologist contacted a specialist in Birmingham and he suggested DTPACE, which is a hospital stay for a week with heavy duty chemo 24 hours a day. I had one cycle of this and my light chains jumped up quite a bit. At this point my haematologist ordered a FISH (genetics) test. Some authorities do this routinely but mine doesn’t. That came back with one genetic abnormality but not one that should affect treatment.
I was referred to Birmingham now as locally they didn’t know what else to do; it turned out neither did Birmingham initially. Originally the thoughts were for me to go straight to Stem Cell transplant in the hope the high strength chemo Melphelan you have before transplant would do the trick. I proceeded to have stem cell harvest and the specialist said, in the meantime, he would get a specialist pathologist to look at my bone marrow biopsies (by then I’d had three) and blood tests. The pathologist found the answer; I had CD20, which is a Lymphoma protein, attached to my Myeloma cells. This was blocking the treatment getting through to kill off the Myeloma cells. A PET scan had shown the Lymphoma had gone, but it was still lurking there in my blood cells. My specialist rang around the country to see if anyone else had had this and I appear to be the only one that they know of. Discussions were had and it was decided to give me 6 more months of a mix of Lymphoma and Myeloma chemo (Rituximab and Bendamustine) and this finally got my light chains low enough for me to have the transplant, which took place in January 2019, two years after I was diagnosed. Instead of just Melphelan for the transplant I had 5 days of a mix of drugs (Lymphoma ones) and then the Melphelan. I had a horrendous time with the transplant (another story) but it did result in getting me into remission.
There is hope and we are all different, Somme of us more different than others. It is often just a question of trial and error to find the right mix. What I would suggest, if this hasn’t happened, is that you ask for a FISH test to rule out any genetic complications that can make it harder to treat. My second suggestion is that you join the UK Myeloma support group Facebook page as you will find a lot of experience on there and you will get answers to questions more quickly. Thirdly download the Myeloma UK information for newly diagnosed patients as that is very useful at giving you a sound understanding of how Myeloma works so you can have informed discussions with your haematalogist. Good luck and please let us know how things go.
Regards
Paula
dawn 3 years, 11 months ago.
