[Christina1952]

Should I start back on Revlimid?

by Christina1952 on Thu Jun 27, 2013 12:45 am

So my m protein has gone up a little every month since April. .2, .3, .34, .42, now .5
I've been off rev/ dex since last September . It's been great. But since this trend is upward, should I go back on rev/ dex? Now or wait another month. My hem/ onc says not to worry but I don't want to keep trending. He says whatever is my comfort zone to start. ?.??
Any ideas. .?
I'm getting my zometa next month, which I get every 3 months. Any suggestions? Thanks!

[NStewart]

Re: Should I start back on Revlimid?

by NStewart on Thu Jun 27, 2013 1:02 pm

My oncologist set a benchmark for me when my numbers began to rise. He set 1.5 as the number where he would recommend restarting treatment. He said that the values below 1.0 were really subjective numbers because of the way the scans are read. Fortunately for me it was 18 months before I reached the benchmark that he set for treatment. I continued with the Zometa every 6 weeks during that time so my bloodwork was done every 6 weeks.
Knowing that my oncologist had set a treatment parameter and kept a close eye on my status really helped to ease my mind. Once I restarted treatment I responded quickly and am about to be transitioned to seeing my oncologist every 3 months instead of every 6 weeks.
Talk to your oncologist the next time you see him/her and try to get a better answer than what you've been given. I feel that they should tell us what their treatment philosophy is and why so that we can make more informed decisions about our care.
Nancy in Phila

[Barneasada]

Re: Should I start back on Revlimid?

by Barneasada on Thu Jun 27, 2013 4:58 pm

I'm at 0.5 and 0.7 depending on which lab I go too. I'm on 25 mg rev/ once weekly Velcade/ and 40 mg dex which might be overkill but I tolerate it all pretty well. I would like to see my numbers at 0 but maybe not until after I get a stem cell transplant but I haven't had one and do not plan on having one until absolutely necessary. I'm 26 yr old and have had multiple myeloma for almost 8 years... Just started induction treatment 1 year ago.

My doc always says dont focus on numbers and look at overall picture and research has shown that a slow rising Mspike does not necessarily mean active disease... Try to live life to fullest and don't micromanage numbers is my motto !!! We put our Trust in doctors and usually there right! Hope this helps somewhat ...

(With Mspike so low I'd just keep riding wave of no treatment and drink some wine ir beer and live without treatment because we know when it starts it goes on for awhile)

Mark

[Christina1952]

Re: Should I start back on Revlimid?

by Christina1952 on Thu Jun 27, 2013 7:40 pm

Thanks for your replies, my hem/ onc is pretty low key about these numbers. He says they are pretty low and not to worry. I'm more of the worrier and feel like I should do something sooner than later. I do see him every month so I know we're on top of these numbers. All my blood work is normal and I do feel pretty good. BUT, I just don't want to see it going up . I get zometa next time , and I'm sure we will discuss it. It always helps to hear other people's opinions though.

[Dr. Jason Valent]

Re: Should I start back on Revlimid?

by Dr. Jason Valent on Tue Jul 02, 2013 12:13 pm

It is correct to say that the numbers when so low are difficult to interpret as true progression. However the increasing trend is a bit worrisome. There is technically not a true cutoff as to the number that is considered correct to restart treatment. I tend to restart or change treatments if a trend like this continues.

It may be reasonable to restart treatment with a maintenance dose of Revlimid if this has been successful in the past and then add dexamethsone if the single agent Revlimid is not successful in stabilizing the numbers.

[Christina1952]

Re: Should I start back on Revlimid?

by Christina1952 on Tue Jul 02, 2013 6:11 pm

Thanks Dr.Valent, I've decided that if my m protein goes up again this month(July), I will ask my doctor, who is not a multiple myeloma specialist, but is a hem/ medical oncologist to start me back on Revlimid. This would be my third time back on at 25 mg, and 20 dex. It has worked in the past so I'm hoping it would continue. My doctor is always very supportive and knows I have a low threshold ( fear) and that I'm too nervous to keep waiting. So, thank you so much for reinforcing what I'm thinking already.BTW, he's only ever kept me on 25mg, not anything lower. When I asked him once about this he said that was for maintenance after a SCT. I'm way past that now, as I had my SCT in March 2006.

[Dr. Jason Valent]

Re: Should I start back on Revlimid?

by Dr. Jason Valent on Wed Jul 03, 2013 8:21 am

The doses used in the maintenance studies after transplant were 15 mg or 10 mg. Although that data was not available in 2006. Lower doses were used as there was more concern about bone marrow suppression in a developing bone marrow. If you tolerate the 25 mg, that is very reasonable.