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

Continuous Velcade treatment

by Christina on Sun Apr 03, 2016 11:33 am

I'm wondering if anyone has continued on Velcade after the typical 6 cycles? I started in December and the results have been amazing. My light chains are normal, as is the ratio. I have a small M protein of 0.2 g/dL (2 g/L).

So, my doctor is thinking of having me go off Velcade / dex after the next cycle or so. I'm wondering if just continuing is something anyone is doing. This is not maintenance as such, but having switched treatment plan from Pomalyst to Velcade.

If I go off Velcade, it seems it's only a matter of time so to speak that I'd have to start again. But still the break would be nice.

Anyone on ongoing Velcade, perhaps at a different interval than the 3 weeks on / 1 week off?

Christina
Name: Christina
When were you/they diagnosed?: June2005
Age at diagnosis: 52

Re: Question about continuing Velcade

by lrankin on Sun Apr 03, 2016 11:47 am

I am happy to hear you have had good response.

My husband is the patient and his treatment was 6 cycles Revlimid, Velcade, and dexa­metha­sone. I am not sure I will be of help, but I did want to raise 2 questions.

Velcade is associated with peripheral neuropathy (PN), I think. I know my husband had that experience. I think there is a good chance it does subside. Sounds like you have not had any intolerable experiences with PN?

Secondly, I also wonder if the toxicity would be reasons why they don't provide continuous treat­ment? Again, I could be wrong. Sometimes they do continue with certain maintenance chemo but at a lesser dose. I am not familiar with how that may apply to Velcade.

I hope you get some good replies from people who have a similar experience as yours.

lrankin

Re: Continuous Velcade treatment

by wvjim on Sun Apr 03, 2016 7:22 pm

Hi Christina,

I started Velcade in July 2015 and will have had nine months of treatments this month. I'm also Revlimid and dex. The doctor will take me off Velcade and use Revlimid as maintenance if and when the light chain numbers come down to normal. The numbers went up from 122 to 132 the past month. So it looks like more Velcade. I do three weeks and one off each Tuesday.

Best of luck, Jim

wvjim

Re: Continuous Velcade treatment

by mrozdav on Sun Apr 03, 2016 7:30 pm

Christina,

I am on continuous Velcade treatment after dropping Revlimid and dexamethasone. I consider it "maintenance." My specialist has me on Velcade, but has indicated that there are no studies that definitively demonstrate that this is the best way to go. I get an injection once every two weeks.

mrozdav

Re: Continuous Velcade treatment

by Cheryl G on Sun Apr 03, 2016 8:19 pm

Hi Christina,

Your doctor has had you on continuous therapy before -- for a long time, if I recall correctly. So I don't think your doctor is fundamentally against continuous therapy. Instead, I think your doctor may just be concerned about the possibility of peripheral neuropathy from long-term Velcade use, and also the general impact on your body of continuous drug therapy.

As you suggested, if you don't go on continuous therapy, you will have the option when you relapse to try Velcade again, perhaps in combination with another treatment.

Good luck!

Cheryl G

Re: Continuous Velcade treatment

by Christina on Mon Apr 04, 2016 10:20 am

Thank you all for the input.

Since I've responded so well to Velcade, I think he's thinking to take a break perhaps after this next 5th cycle.

I have had continuous treatment with Revlimid (5 years), plus then I tried Pomalyst, which did nothing but drop my neutrophils and WBC.

So I'm very happy about the Velcade working. I've not had any peripheral neuropathy but have had eye problems. Mostly weepy and some styes come and go.

Well, I get my labs next week so that'll tell more of the story.

Thanks again for the input.

Christina
Name: Christina
When were you/they diagnosed?: June2005
Age at diagnosis: 52

Re: Continuous Velcade treatment

by Ron Harvot on Tue Apr 05, 2016 5:59 pm

I was diagnosed in February 2009 and at that time was on weekly infusions of Velcade. I later went to subcutaneous shots and was put on maintenance with a shot being administered once every 2 weeks. I continue on that protocol now. So I have had Velcade continuously for over 7 years. No noticeable side effects.

I also take dex at the same time as the Velcade. I do get multiple side effects from the dex (insomnia, moodiness, burst of energy on the first day and crash on the second, water weight retention (slight swelling in the ankles and feet for 2 days), increased HR and hiccups).

Ron Harvot
Name: Ron Harvot
Who do you know with myeloma?: Myself
When were you/they diagnosed?: Feb 2009
Age at diagnosis: 56


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