I'm two months past autologous stem cell transplant and am in discussion with my doctors regarding a maintenance regimen. Revlimid, unfortunately, is not an option for me. During induction therapy, Revlimid at even 15 mg every other day crashed my WBC. So Velcade is most realistic option, it seems.
The doctor would like to include low dose dexamethasone (10 mg every other week with Velcade injection). I had to deal with high-dose dexamethasone for almost 6 months of induction. I lived with it, but dread, absolutely dread, the side effects. I am a very active person (i.e., marathons and such), and am tired of having the dex zap my ability to build / maintain muscle mass / tone.
What sort of differences are there between Velcade maintenance with and without low-dose dex, in terms of controlling the disease and side effects? (Even with a stem cell transplant, I've not achieved remission). Should I expect even lower-dose dex to impact my ability to be physically active?
I know i gotta take this crap. I'm just trying to figure out what mix is going to give me the least amount of side effects. Unfortunately, I cannot find any studies specific to this issue.
Thanks,
Andy
Forums
5 posts
• Page 1 of 1
-
Andy D - Name: Andy D
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2010
- Age at diagnosis: 51
Re: Velcade maintenance and dexamethasone
I would try the Velcade and lower-dose dexamethasone for awhile. I have been on Velcade and dex for the last two plus years. I started at 20 mg of dexamethasone weekly and then went to 12 mg weekly. In my experience, the short-term effects are manageable. And most evidence indicates it improves results.
One important step: Try to get a bone scan for osteoporosis. In the long run, dex can cause bone loss, and you need a scan now to compare a later scan to.
There is no reason, though, not to try it for a few months.
Good luck,
David
One important step: Try to get a bone scan for osteoporosis. In the long run, dex can cause bone loss, and you need a scan now to compare a later scan to.
There is no reason, though, not to try it for a few months.
Good luck,
David
-
Arizonan - Name: Arizonan
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2010
- Age at diagnosis: 54
Re: Velcade maintenance and dexamethasone
I took Velcade and dexamethasone as induction therapy. I got Grade 4 peripheral neuropathy from the Velcade. It was terrible, and now I have permanent nerve damage and will be on Dilaudid (hydromorphone) for the rest of my life. So be very careful with the Velcade. If you have any tingling or numbing in your hands or feet, be sure to tell you oncologist right away.
The upside is that the Velcade extended my life for sure because my myeloma paraproteins dropped dramatically. And I must mention that I did not tell my oncologist about the numbing and tingling in my feet because I was afraid he would cut back on the dose and my myeloma would get worse. Bad decision on my part, but at the time I was new to the multiple myeloma journey.
Good Luck and God Bless
The upside is that the Velcade extended my life for sure because my myeloma paraproteins dropped dramatically. And I must mention that I did not tell my oncologist about the numbing and tingling in my feet because I was afraid he would cut back on the dose and my myeloma would get worse. Bad decision on my part, but at the time I was new to the multiple myeloma journey.
Good Luck and God Bless
-
GeorgeLJurak - Name: George Jurak
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Jan. 2011
- Age at diagnosis: 59
Re: Velcade maintenance and dexamethasone
Thanks. Yes, George, I also used Velcade given subcutaneous for induction and was lucky enough that, until the very end, it did not cause the severe neuropathy that you had to live with. But thank you for the word of caution. I will heed your advice.
What I am particularly interested in is what to expect from the low dose dexamethasone component of the Velcade-dexamethasone treatment.
David, has it been your experience with the low dose of dex that it does or does not give you that bloated feeling and accumulation of belly fat? Also, thank you for mentioning the osteoporosis aspect. Yes, I am already dealing with that just because of the multiple myeloma. Compression fracture and wedging. But I am lucky enough that it is stable, so I am able to be active. But, yes, will make sure that issue is also monitored.
What I am particularly interested in is what to expect from the low dose dexamethasone component of the Velcade-dexamethasone treatment.
David, has it been your experience with the low dose of dex that it does or does not give you that bloated feeling and accumulation of belly fat? Also, thank you for mentioning the osteoporosis aspect. Yes, I am already dealing with that just because of the multiple myeloma. Compression fracture and wedging. But I am lucky enough that it is stable, so I am able to be active. But, yes, will make sure that issue is also monitored.
-
Andy D - Name: Andy D
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2010
- Age at diagnosis: 51
Re: Velcade maintenance and dexamethasone
Bloating - I did get that, but could control it somewhat by what I ate.
Weight gain - It does seem to increase your appetite, and I did gain weight.
But I don't think there is any harm in trying it for a few months. The short-term impacts of 10 mg dexamethasone every other week will likely be manageable.
Good luck,
David
Weight gain - It does seem to increase your appetite, and I did gain weight.
But I don't think there is any harm in trying it for a few months. The short-term impacts of 10 mg dexamethasone every other week will likely be manageable.
Good luck,
David
-
Arizonan - Name: Arizonan
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2010
- Age at diagnosis: 54
5 posts
• Page 1 of 1
Return to Treatments & Side Effects