Help! Don't know which way to go.

Hi everyone,

Husband was on Rev/Dex for 23 months when it failed.  He was started on Vel/Dex in June, 2009 and he is getting along great and his numbers (IgG - 703, m-spike - 0.8) are coming down.  He has had 4 cycles of 2 treatments per week for 2 weeks then 1 week off.  His doc is now going to give him 1 treatment per week for 2 weeks then 1 week off for 4 cycles, then she plans to stop ALL treatment.  It has always been my understanding that you continue treatment for as long as the drug  is working and when it fails, you move on to another treatment until it no longer works and so on.  You don't stop treatment and wait to see what happens.  Am I wrong?

Here's my questions for you and your doctors, even if you are not on Vel/Dex, would you ask?

1.  Is 8 cycles of Vel/Dex all that is ever given or can it be given longer?

2.  Do you ever "stop" myeloma treatment if the treatment is working and the patient is getting along fine with the meds?

3.  Would any of you stop treatment after only 8 cycles if the drug is working and you are not having any problems with it OR would you continue taking the drug until it failed?

We had hoped to get another year or two on the Vel/Dex treatment.  By that time, we had hoped there would be better treatments on the market - perhaps even a cure.  We were really caught off guard when she said she planned to stop after 4 more cycles.  I really hate this roller coaster ride these doctors put everyone on.  I will also be checking with the IMF hotline, to see what they have to say.  Thanks, in advance, for your help. 

Jan

From Anna,

Hi Jan, Welcome to the group. Dad has said as long as a treatment is working for him he'll do it.  He's been off and on chemo for years. Don't know how long the longest was.  I know one he did for a while everyone is different and so is every Dr.

Your friend,

Anna

If I were under such a treatment plan, NO, I wouldn't stop after eight treatments...especially if it's working and I'm not having side-effects

Wish you the best

Doug 

Hi Jan... i actually had been wondering about you/your husband prior to reading this. I was away for the weekend but just saw your message.

The question i can answer for you is - yes, you can absolutely use Velcade for a long time, if it is working. My dad just hit his two year anniversary mark with the MM - and has had Velcade for TWO YEARS, non-stop. He has never been off it and it literally was his life-saver and he is still going strong. First it was just Velcade & Dex, then for a while just Velcade alone, and now for the past six months it has been Velcade + Dex + Thalidomide. He is still stable and has very good numbers. No remission though... he has never reached remission for whatever reason but has been just 'points away' most of the time. IGA usually anywhere from 100 to 150, going up and/or down occasionally in that range.

Everyone is different, and i guess it depends on the patients age, overall health, and the doctor, etc about dosage and treatment plans... but from what i've learned on this board... i think most don't stop - unless they are in remission... and even with that, i think they still usually take something for 'maintenance'.  Is your husband in remission, or just stable like my father?

My dad for most of the course has gotten Velcade once a week, for four weeks in a row, and then usually has two or three weeks off. Then goes back and starts the cycle again, and so on, and so on... He is almost 80 years old and in the beginning he was so sick & in so much pain, we decided that twice a week would be too much for him, and then just continued with the once a week since it's been working well for him.

You should be able to get a lot of mileage out of the Velcade. Since it's been two years now, i worry that it's going to stop working for my dad.

Have a chat with your doctor... and chat with some others on this board before you do so. Please keep me up to date & good luck. Write again if you need anything else we might be able to help with.

Deb

As Deb said, everyone is different.  My husband had bad side effects from Velcade, although it does appear to have worked to get him into some type of response (we are awaiting biopsy results to see how good a response).  He had severe bone pain after having 3 cycles and has lost much weight.  But....that being said, he also is headed towards a transplant so we wanted to beat down the MM (Kevin's words). 

As for continued treatment, we are now in limbo...as we need to know biopsy results before they know what to do next.  More than likely they will keep Revlimid as the drug for him to use first as it had fewer side effects....but will know more here soon. 

Each person is different, each treatment has surprises....so keep the faith, and stay in charge....as this is a path that each person travels differently, but as Kevin says we have to keep the MM beaten down.  AMW

Hi Jan~~

I had several rounds of Velcade, but had to stop because of horrific side effects and near death to me!  After a lengthy period on no chemo while I was trying to regain strength and appitite after losing 50 kilograms, I was then able to get Revlimid and have been on that for 4 years.  When I recently asked the top MM specialist here in Australia whether I should go off of it as my results have been so good for the entire time, his response was 'when you are on to a good thing, and responding so well, don't change ANYTHING'.  That fit with my own diagnosis, and so I've continiued for the past 10 months taking the same dose - 10mg with no dex, 21 days on and 7 days off.  I know that some people feel that by going off of the chemo then it will work better for them when they need it again, but its been my experience on this board that people who resume treatment after a period of 'rest' time, never get as good a result as they had before they stopped.  Of course, this is all up to you and your doctor -- whether she will continue to prescribe for you, whether you will have to fight to get what you want, the logic behind her decision.  You are wise to question, for only then will you have valid evidence to back whatever your decision.  Best wishes, Cath

Hi Everyone,

Thank you to all who have answered my post.  It is such a big help to have contact with others who are going through the same thing Husband is.  After some discussion, Husband & I are going to stay with the Velcade/Dex until it no longer works, then move on to something else.  Doc is still talking about adding Doxil, but that isn't going to happen unless there are NO OTHER choices left.  From what I see here on the board, there are several other choices of meds to add, if need be.  If need be, we will find another doctor.

Thanks again for your input.  As usual, you have saved my sanity and gotten us on the right track again!

Take Care!

Jan

Hi Kevin,

Sorry it took so long to reply - couldn't find how to get to private replys.  Finally logged in with my screen name and password and hit my notifications and got to private replys.

Thanks for your info.  I would like nothing better than to have him off treatment for a while, but the way his numbers went up when the rev/dex failed, I'm not sure we can take the chance.  We'll speak with her about reducing the dose or a manitenance program.  Perhaps we can again consider the Mayo trials.

How are the new meds working for you?  I hope all is well.  We all have to keep the faith and hope they find the way to stop this beast.

Take care!

Jan   

Kevin,

My private reply to you ended up on the message board!  Don't know what I did wrong.  Oh well, you'll have to go to the board to see it.

Jan

Just something to think about, at the Myeloma seminar one of the Dr's did see stopping the drugs as a goal, since they do not know what, if any, long term damage they might do.