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Discussion about multiple myeloma treatments, stem cell transplants, clinical trials, alternative medicines, supplements, and their benefits and side effects.

Taking a treatment break / holiday / vacation

by rechevar on Thu Aug 18, 2016 12:14 pm

My husband has multiple myeloma and has been on Kyprolis, Cytoxan (cyclophosphamide), and dexamethasone for about 19 months. He went on to this regimen after Revlimid and dexamethasone resulted in a blood clot.

He is ineligible for a stem cell transplant due to his age. His M-spike has never been particularly high. He has IgG lambda multiple myeloma. He is slightly anemic, though not enough for transfusion. He is weak and off-balance.

He is going to take a one-cycle chemo break, but is a little leery of it.

Do any of you have any experience with taken a chemo break? Did you feel better? Did your multiple myeloma increase? Did your good blood levels increase?

Thanks for any info.

rechevar
Name: Ronni
Who do you know with myeloma?: My husband, Frank
When were you/they diagnosed?: November 2014
Age at diagnosis: 80

Re: Taking a treatment break / holiday / vacation

by Chris M on Fri Aug 19, 2016 8:58 pm

Hi Ronnie,

My husband (64 years old) had to go off all his myeloma treatments before he could begin a clinical study drug, Tecentriq (atezolizumab, MPDL3280A), a monoclonal antibody, in April. During this time, his energy level increased greatly, as did his hemoglobin. He felt great! His M-protein continued its gradual climb, which had been rising usually one-tenth of a g/dL every month. It's been rising like this for 18 months, despite several different treatments and the clinical study drug he's been taking since April.

Unfortunately, a lesion in his femur worsened 3 months after starting the study drug, and he had to have a rod placed in his femur to prevent it from breaking. He also has a history of clots: a DVT in 2011, and another in 2015, along with multiple pulmonary embolisms in both lungs at that time.

Is your husband's hematologist recommending the treatment break? And does the physician specialize in multiple myeloma? You've probably already read in other posts how important it is to have a specialist involved in a myeloma patient's care.

Best wishes to both you and your husband.
Chris M.

Chris M

Re: Taking a treatment break / holiday / vacation

by Kate on Sat Aug 20, 2016 9:55 am

Hi Rechevar,

I took a break from treatment and am still on it for 2 years now. I was on Revlimid and dexa­metha­sone. I also have IgG myeloma. My levels went up and then down. While I am still under doctor's monitoring, I am not uptight about numbers. I feel great, I am medication free, and that's the way I am assessing my condition. BUT, I have been taking curcumin and other supplements during and after chemo. I am also a senior and had no transplant.

Kate

Kate
Name: Kate
Who do you know with myeloma?: myself
When were you/they diagnosed?: Dec. 2012

Re: Taking a treatment break / holiday / vacation

by rechevar on Sat Aug 20, 2016 11:34 am

Hi Kate,

We have heard that curcumin is a good thing for multiple myeloma. How much do you take?

rechevar
Name: Ronni
Who do you know with myeloma?: My husband, Frank
When were you/they diagnosed?: November 2014
Age at diagnosis: 80


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