MM side effects

My mother was d/x with MM 15 months ago, she had a terrible side effect using Revlide when the Dr. gave her 25Mg, we then asked the Dr. to lower her dose and her IGG started dropping quickly   They continued to drop the lowest being 1666.  At the time of D/X her numbers were 5500,  after taking Revlimide, 4 months, the IGG had gone down to 1600 then the igg WENT  up to 1800 and the Dr. changed her meds. to velcaid, she got severe diarrhea and she feels so horrible, so after 2 treatments the Dr. has taken her off of Velcaid....Has anyone been given lower dosages of Velcaid in any of your experience?  She does not want to continue Velcaid with the severe side effects...thanks fredagail

Hi-

My father took velcade for several months at the beg of his treatment because his MM levels were so high. Velcade worked well to get his levels down, but he had terrible side effects. He also had very bad diarrhea and neurophey(sp) in the bottom 1/2 of his legs. He stayed on Velcade until he was too weak to withstand anymore. He also could not eat much on Velcade everything went from tasting like metal to paint for him, so he lost a tremendous amount of weight.

After velcade his dr's sent him to rehab for a fews months to get strong and recover before putting him on Revlamid for maintenence. He's been on Revlamid for a year now (15mg) and have very little side effects.

Hang in there! Sometimes it takes a few meds before finding the one that is the right fit and dose.

From Anna,

Hi fredagail, All you can do is ask if the dosage can be lowered. Welcome to the group. Don't remember you here before. 

Your friend,

Anna

I am new Anna, I so appreciate you responding.. and the information...Will talk to you soon..

Your friend .gail

On Oct 31, 2009 5:42 AM fredagail wrote:

My mother was d/x with MM 15 months ago, she had a terrible side effect using Revlide when the Dr. gave her 25Mg, we then asked the Dr. to lower her dose and her IGG started dropping quickly   They continued to drop the lowest being 1666.  At the time of D/X her numbers were 5500,  after taking Revlimide, 4 months, the IGG had gone down to 1600 then the igg WENT  up to 1800 and the Dr. changed her meds. to velcaid, she got severe diarrhea and she feels so horrible, so after 2 treatments the Dr. has taken her off of Velcaid....Has anyone been given lower dosages of Velcaid in any of your experience?  She does not want to continue Velcaid with the severe side effects...thanks fredagail

Hi Fredagail,

Welcome to the group.  First, my question is, did the doctor try to treat your mother's diarrhea with anything?  Velcade works very well.  I would think that the doctor would try to treat the diarrhea before giving up on the meds.

How old is your mother?

Unfortunately, everything has side effects and we have to try to control them somewhat before giving up on that medication.  I was on Velcade for almost two years (including the chemo before transplants and maintenance).  I did have the diarrhea and practically lived on immodium for a while.  I also have neuropathy.  I never had to take anything for the neuropathy, but I've heard that there are meds you can try for that.

In answer to your question regarding lowering the dose of Velcade - yes it can be lowered.  My was lowered, but I was already in remission.  My dose was lowered a couple of times and at one point I was told it could not be lowered any more because it would have no value for the MM.  So, there is a point at which the Velcade would not do any good.  I was also given a longer break in between doses a couple of times, so my body would heal.

Is your mother seeing an MM specialist?  They know all the side effects of these medications and may have treatments for them.

I always asked myself the question:  Is is worth dealing with the side effects to get better?  My answer was always, yes.  It's better than the alternative. 

Good luck.  I'll pray for your mother.

Lois

Hi, My husband had bad side effects also, but they did lower his dose and the lower dose brought about a near complete although short lived remission.   I think there is some school of thought that the lower dose can be just as effective over the long term, but I don't know where the research is to back that up.  Liz

Hi! Just wanted to add on my husband's experience with velcade. He never got the 'runs' but he had this terrible nerve pain on his feet. Now, after SCT in July, and its been nearly four months since, the only problem he has is the nerve pain but it seems to be diminishing.

From what i hear from the haematologist, Velcade is a very effective drug against MM and in fact, in Malaysia they are now doing clinical trials with velcade/thalidomide/dex....and it has brought some very good results.

best of luck and take care everyone. I have been away for some time but i am back now! If anyone wants a break, do come here to malaysia and we can have a great time.

Grace