[gmarv]

Soon will be stopping treatment - anyone else done it?

by gmarv on Sat Jul 19, 2014 10:49 am

I'm on VRD [Velcade, Revlimid, and dexamethasone] and have been for over a year and a half now. In September will be my 2 year anniversary.

At that point, my doctor and I are thinking I will stop the Velcade. I will continue to take Revlimid and dex for another 6 months. If I'm still doing good, I will then stop them too.

Has anybody else done this and, if you don't mind sharing, how it went for you?

Any thoughts anybody has will be appreciated.

By the way, I'm very much looking forward to doing this and will take what I get, good or bad..

[Ian Forsyth]

Re: Soon will be stopping treatment - anyone else done it?

by Ian Forsyth on Mon Jul 21, 2014 1:01 am

For me I had a maintenance treatment of 10mg of Revlimid every day for one year following 6 months with Velcade, 25mg Revlimid and Dexamethasone, stem cell collection only, no transplant.

One year ago all treatment was stopped apart from Zometa which I receive every 3 months for strengthening the bones. Everything seems to be good even after 12 months. The monthly protein analysis has been stable and is described as 'Normal Profile'. I must say that being without any treatment for this relatively long period has had the advantage of enabling the body to lose the side effects of the previous eighteen months of treatment. I actually feel quite well and follow a normal lifestyle.

I hope all goes well for you too, it is certainly a good course to follow if your body is able to keep the illness under control without any help. Just make sure you have regular checks so that if a problem dose show up it does not have time to get out of hand.

[gmarv]

Re: Soon will be stopping treatment - anyone else done it?

by gmarv on Mon Jul 21, 2014 9:51 am

Hey Ian,

Glad to hear you are doing well with no drugs so far. When I get to where I can stop the Revlimid, I will have been on Zometa for 2 years then. I will most likely stop it also. I'm gonna get blood test at least every 6 weeks. Could be once a month. Still up for debate.

I hope you have a long time with no drugs, but if when things start to go against you, is your plan to go back on the VRD treatment? It's way too early for me to be looking that far ahead, but
that will be my plan.

marvin

[Ian Forsyth]

Re: Soon will be stopping treatment - anyone else done it?

by Ian Forsyth on Mon Jul 21, 2014 3:14 pm

Hi, great to exchange notes with you!

I am really pleased to find that my body has not only survived for a year without medication, but the blood test results are even better now than at the start of the period. Today (July 21, 2014) I had my 8 week checkup at Limoges CHU, and my consultant spent literally 15 minutes with me and told me to come back in another 8 weeks.

For the next session of treatment? Well, I would try the same again, Velcade, but injected under the skin not into the vein perhaps, and Revlimid. They worked so fast when I had my first treatment in January 2012, even within a month I was back to near-normal blood test results. I hope they will work nearly as well next time. My hope is to avoid a transplant, although they do have my stem cells in the ice box!

Very Best Wishes to you Marvin

[gmarv]

Re: Soon will be stopping treatment - anyone else done it?

by gmarv on Tue Jul 22, 2014 6:00 pm

Hey Ian, you peeked my interest, where is Limoges CHU, if you don't mind my asking?

I think any time the doctors don't want to spend much time with us it's a good thing.

My doc has been telling me my tests have been boring for a while now, which means everything is good. Anyhow hope you continue good results.

marvin

[Ian Forsyth]

Re: Soon will be stopping treatment - anyone else done it?

by Ian Forsyth on Wed Jul 23, 2014 1:27 am

Hi Marvin.

Limoges is in the southwest of France. Limoges CHU is the university hospital there.

I agree totally, boring results are good, they indicate stability. Most illnesses are a battle between the strength of the illness and the strength of your body, and if test results demonstrate equilibrium for a long period, it has to be good.

I would mention also that my entire treatment has been carried out as an 'outpatient' involving no overnight hospital stays. Indeed, the Velcade was given to me in the hospital restaurant whilst I was enjoying lunch!

It is now approaching three years since my diagnosis (I am 60) and I have been very impressed with the effectiveness of the latest medications, peripheral neuropathy being the only significant side effect.

Kind Regards to you Marvin,
Ian

[Gruncle]

Re: Soon will be stopping treatment - anyone else done it?

by Gruncle on Sat Aug 02, 2014 8:56 am

Greetings,

I too have accomplished the goal of reaching complete response after only four cycles of CyBorD and monthly Zometa. The Velcade has been subcutaneous (subq) but still managed to cause some unpleasant neuropathy-related side affects. My onc has reduced the Velcade from weekly to 2x every cycle.

All tests including light chains are within range and M-protein is undetectable. Next step appears to be heading towards Revlimid maintenance after my stem cell collection. Those little guys will stay on ice for a very long time as I have NEVER felt a stem cell transplant [SCT] was for me. I can only hope to soon achieve and maintain a long and healthy treatment-free period in the near future.

This thread has been a wonderful inspiration and I wish all continued good health.

Thanks to all who have contributed!

Doug

[Wayne K]

Re: Soon will be stopping treatment - anyone else done it?

by Wayne K on Sat Aug 02, 2014 9:48 am

I had no treatment for a 3 1/2 year period following Velcade and then a SCT. My disease has returned, but the return has been much less aggressive than the first appearance.

[Piper009]

Re: Soon will be stopping treatment - anyone else done it?

by Piper009 on Sat Aug 02, 2014 4:09 pm

Hi ~

I was diagnosed July 30th 2009. Had autologous stem cell transplant [ASCT] March 22, 2010. Achieved VGPR. Declined maintenance. Continued with Zometa until February 2013.

Have labs and doctor visits every 3 months. No issues thus far. Four years no treatment … remain in VGPR.

Good luck!

[Dr. Peter Voorhees]

Re: Soon will be stopping treatment - anyone else done it?

by Dr. Peter Voorhees on Sun Aug 03, 2014 3:29 pm

Dear all,

The decision about duration of therapy (which includes a discussion about transplant and maintenance) is a difficult one and must take into account:

1. The nature of the disease (standard, intermediate, or high risk);
2. Side effects of the treatment;
3. Other medical conditions that could impact safety / tolerability of longer term therapy; and last but not least,
4. What the patient desires for their care.

I would urge caution when comparing your stories because your multiple myelomas are all very different. What might be a successful strategy for one patient's myeloma may be a bad choice for another.

These are complicated discussions that must be pursued with your myeloma specialist, taking into account the factors I noted above.

Thanks!

Pete V.