[corinnastevenson]

Treatment options for relapse

by corinnastevenson on Wed Jan 29, 2014 5:48 pm

Hello.

I am a 43 year old woman, living in Quebec, Canada. I was diagnosed in January 2010 with kappa free light chain myeloma. My numbers were in the 2800's and I had extensive bone damage. My FISH results were good with no indicators of high risk, refractory myeloma.

I was given high dose dex only (no other drug except for pamidronate, no radiation therapy, although it was considered), to which I responded well, followed by asct in April of 2010.

I was in complete remission, no maintenance therapy until September of this year (3.5 years). I have been going in monthly for blood work since.

My Kappa climb looks like this:
Sept: 30
Oct: 30
Nov: 32
Dec: 34
Jan: 43

Given the upward trend, the thought is I am relapsing. My question is regarding when to treat and what treatment options would best serve me. Any advice would be appreciated.

Regards,
Corinna

[lys2012]

Re: Treatment options for relapse

by lys2012 on Thu Jan 30, 2014 3:15 pm

Hi I know there are many different treatments or combinations of meds used now to treat multiple myeloma, but I just wanted to reply to your post since no one had replied.

I am in Toronto, Ontario. My timeline is similar to yours. Diagnosed January 2010, treated with high dose Dex, Velcade (not funded by Cancer Care Ontario, but on compasionate grounds by drug company and the hospital because I was very young for multiple myeloma, at 32 years old) then cyclophsophomide and finally my auto stem cell transplant in June 2010. I did 2 years of pamidronate but have been off it for two years. I am still in CR, and drug free.

My plan for Relapse:

My doctor and I have discussed what happens if I relpase. I will take Revilmid (since I've not taken it yet) and likely Velcade a second time. I agree to take low dose Dex, but refuse to take high dose dex again (side effects are hard to deal with). Then I would have another transplant with my stored stem cells.

For me, the plan is to hit hard again with intense treatments to get back into remission, since I mainted a long remission over 4 years since diagnosis. As a younger person ( I am 36) the idea of treating Myeloma like a chronic disease, with contininuous low doses of chemo indefinitely does not make sense since I have many many years ahead of me!

My biggest symptoms were being very anemic, with frequent serious infections. I had a few bone lesions, but nothing major.

[Nancy Shamanna]

Re: Treatment options for relapse

by Nancy Shamanna on Thu Jan 30, 2014 5:18 pm

Hi Corrina, Welcome to the Forum and thanks for sharing your medical story (you too, Lys!). I am sorry to hear that your think you are relapsing. I am not a doctor and can't interpret your test results though, or know when you should start treatment again. But have you asked as to what treatments you have to choose from in Quebec? Is there Revlimid, Velcade or other drugs available for relapse? What does your oncologist think of any clinical trials also? I suppose that in a way since you haven't taken Velcade or Revlimid yet, that is good, since you might respond really well to drugs already available.

[corinnastevenson]

Re: Treatment options for relapse

by corinnastevenson on Mon Feb 03, 2014 10:23 am

Thanks Lys,

I really appreciated your reply. Your relapse plan is especially interesting to me. Being young and in excellent shape I have often wondered about the approach of treating my disease as a chronic one managed by medication. I am meeting with my hematologist is a couple of weeks and will start talking with her about a plan. I will most definitely mention the perspective you present and see what she has to say. I was transplanted in Vancouver and believe that they have a second round of stem cells in storage.

Thanks you!