[Christy]

Slow response to Velcade, thalidomide, and dexamethasone?

by Christy on Thu Apr 14, 2011 3:18 pm

My mother is 77 and ws diagnosed with multiple myeloma at 75. She was treated monthly at first with hard chemotherapy for 8 months. Her lace chain assay markers dropped from 1800 to 650 on this regimen. The doctor then switched to weekly Velcade, and Dexamethone with monthly Zometa, and a daily Thalidomide regimine. Her Lace Chain Assays droped to 94. Her dr has said that Revlimid can cause low blood values s he hasn’t used it. April 27th 2011 she will have be on this described regimen for a year. Her latest Lace Chain Assays value was 57. I am concerned that things may be begining to plateau. As well she never feels well. She has balance problems from one of the drugs and weakness. Her IgG, IgA and IgM valus are all low and not in noraml range still. It hs been frustrating to see progress but such slow progress. We don’t get much explaination or alteration of her drugs to address the problesm. We were told because of her age she was not a candidate for a stem cell transplant. We live in a small town and are limtied at a choice of oncologists. Has anyone else experinced similar problems with this regimen?

[Kerbanis]

Re: Slow response to Velcade, thalidomide, and dexamethasone

by Kerbanis on Fri Apr 15, 2011 2:00 pm

I am 52 and was diagnosed with multiple myeloma(IGA variety) in late December of 2009, after having been in poor health for more than a year. Since the end of January 2010, my treatments included a monthly infusion of Aredia to address the bone issues and Velcade infusions twice a week for two weeks, followed by a week off for rest. After 12 months of good results on this treatment plan, my lab work indicated that my cancer numbers were rising rather than coming down. So beginning in February 2011 Decadron and Thalidomide were added to my twice weekly Velcade treatments. The Decadron is taken orally on the day of chemo and the day following. Thalidomide is taken daily for 28 days.

Weakness and instability are the same side effects that I have experienced. The weakness has been so intense at times, that I must crawl to the bathroom and spend my days laying down. The instability prompted me to first buy a cane and soon after to buy a walker with wheels and a seat. My opinion is that the Thalidomide is the culprit as I find this condition improves vastly when the 28 day cycle has been completed. I never experienced this with the Velcade alone. And the steroids seem to make me jittery and highly emotional and unable to sleep well, but do not impair my stability or strength. When I have had the steroids without the Thalidomide, I become a working machine, rushing from one task to another, getting much accomplished and then collapsing in exhaustion at the end of the day, but laying awake, in spite of being incredibly fatigued.

Over the period of months that I have had chemo in one form or another, I have seldom felt well or strong. My body is battling a terrible cancer and is being continually bombarded with powerful drugs that have produced a promising result, but the progress is very slow and tedious.

Though I am not a doctor, it seems that your mom and I share a lot of similarities in our responses to these drugs and how we feel in general. Perhaps, though you are limited in your options for an oncologist, you could probe into what options are available to your mom to help with these side effects. Is there a cancer research factility within a day's drive, where you could get a consultation? Maybe they could offer some guidance. Also, I was told that the Thalidomide comes in different dosages and even though I am currently taking the most powerful dose, that could be reduced if I found it too difficult to tolerate.

I trust you find some good answers and get the help you and your mom need to find. It is good to live at a time that we can find such promising treatments, but we also want to feel reasonably well while we see our lives extended. I wish you both the best.

[Araxi]

Re: Slow response to Velcade, thalidomide, and dexamethasone

by Araxi on Fri Apr 15, 2011 4:21 pm

I am a relative of a myeloma survivor, diagnosed 1yr. ago. If at all possible go for a second or third opinion, be assertive and ask a lot of questions. As in any profession, some oncologists get set in their ways. Perhaps your mother needs one who is more aggressive or has had prior success with other drugs. The past 5 yrs. there has been so much research yielding new discoveries & treatments for myeloma. I agree with Kerbanis, go to a research facility for an opinion. Has you mother had genetic testing? The reason I ask is that there are numerous chromosomal abnormalities that can cause myeloma. One or a combination of a few can be the cause of her myeloma. This will give your oncologist a clue as to the most effective therapy for her myeloma. Also, do you go to a myeloma support group? I have found the meetings to be comforting & informative, a great forum for asking others about their personal situation. Again, ask a lot of questions. I have found out this is not a one size fits all disease. Best wishes to your mother and you.

[ka1222]

Re: Slow response to Velcade, thalidomide, and dexamethasone

by ka1222 on Fri Apr 22, 2011 10:55 am

Hi Kerbanis,

I read your info and wanting to ask a few questions. Have you had a stem cell transplant yet?
Has your doctor ever discussed putting you on Revlimid? I just recently joined this site because my boyfriend was diagnosised on April 13th 2011. He had his 2nd chemo treatment yesterday of Velcade and they added the monthly Zometta to it. He is also on Decadron and just took his first dose of Revlimid yesterday. As far as side efffects from the chemo, he hasn't had any. He is just battling the intense pain and fatigue as you mentioned. They haven't gotten the pain meds. adjusted just yet to suit his body. He is 49 and is still trying to work everyday and can't handle the strong meds. and work. I have noticed on this site that a great number of people take Thialidomide. I ask the doctor about the difference in Revlimid and Thialidomide yesterday and she said that Revlimid is a newer drug with better results and fewer side effects. That's why I was courious as to wether or not your doctor has thought about the Revlimid.

Karen

[P. Aaron]

Re: Slow response to Velcade, thalidomide, and dexamethasone

by P. Aaron on Mon Apr 25, 2011 9:28 pm

Christy,

I am currently in a clinical trial at the U of MI in Ann Arbor where I take Revlimid(15mg), Dex(15), and am infused bi-weekly for 2 days with Carfilzomib. 21 days on, 1 week off, the Dex weekly. This is my 16th month on the trial. I am 50 years old.

The first 4-6 months, I was beat...dead dog tired and slovenly. The Myeloma did damage that made it difficult to walk to the end of my block & back to my house. As the months wore on, I have improved and thanks to occasional epidural shots, I can function almost normally without pain...almost.

My numbers (M protein?) flatlined after about 8 months. 3 months ago, the bad-Myeloma proteins had dropped from a .5 to a .4. It's a move in the right direction but, it appears that it may be a long road to any type of remission.

Your Mom's age and mine are quite a bit apart so I am not drawing any comparison here. The treatments & outcomes will be different for us all. I guess the only thing I could offer is to be patient but to listen to your Docs & also ask questions relating to what their expectations are using the treatments & keep them informed of the effects on your Mom.

[bond007]

Re: Slow response to Velcade, thalidomide, and dexamethasone

by bond007 on Wed Apr 27, 2011 8:11 pm

You don't state whether the light chains are kappa or lambda; your mother has had a good response if her light chains are 57; under 100 the test is not as accurate; ideally getting to 0 would be perfect but at your mother's age her quality of life is the most important thing and given her good response I would suggest to your doctors to start decreasing her meds; stop one at a time assuming which one is the main culprit for her specific side effects; follow her light chains and you can always restart things if there is a concern but as I have said her quality of life is the most important thing given her good response and her age; with myself, my normal immunoglobulins ( IgM , IgG and lambda light chain (I have kappa light chain disease and IgA) ) are all low and are suppressed in me by the dexamthasone and rise when discontinued