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Discussion about multiple myeloma treatments, stem cell transplants, clinical trials, alternative medicines, supplements, and their benefits and side effects.

Velcade via infusion or subcutaneous injection

by mowgli18 on Tue May 17, 2011 3:41 pm

Hi,

I am just finishing my second round of chemo using Velcade/Revlimid/dex. The docs put me on a 3-week cycle (two on and one off) where Velcade was twice a week, Revlimid was 14 days and dex was a once-a-week large dose.

My question: almost immediately I started feeling neuropathic symptoms in my fingers and toes with the Velcade (not terrible but some numbness, tingling, pins&needles feeling). I mentioned it when the doc asked at the end of my first treatment cycle and she cut me down to once a week for the Velcade because she was concerned about it getting worse.

I read in one of the articles here that Velcade is given in other countries via subcutaneous injection and seems to be better for these kinds of side effects. Is that somethiing we do in this country and if not, any ideas why?

thanks for any info.

mowgli18

mowgli18
Name: Mowgli18
Who do you know with myeloma?: myself
When were you/they diagnosed?: March 2011
Age at diagnosis: 51

Re: Velcade via infusion or subcutaneous injection

by rumnting on Tue May 17, 2011 5:19 pm

My husband was just diagnosed, and last week had the big work-up at the Mayo Clinic. He is starting on that same regimen next week here in Michigan. The Mayo doctor told my husband that he will get the Velcade sq, and that there is way less neuropathies this way.

rumnting
Who do you know with myeloma?: husband
When were you/they diagnosed?: 4/9/11
Age at diagnosis: 54

Re: Velcade via infusion or subcutaneous injection

by mowgli18 on Wed May 18, 2011 8:17 am

So this must mean it can be done subq in the States. Any docs out there know for sure or is this possibly a trial of some sort? If it can be done I'll talk to my doc about it.

mowgli18

mowgli18
Name: Mowgli18
Who do you know with myeloma?: myself
When were you/they diagnosed?: March 2011
Age at diagnosis: 51

Re: Velcade via infusion or subcutaneous injection

by Shawn on Wed May 18, 2011 9:11 am

I'm not on Velcade myself, but I've heard a number of people in the US say they are getting their Velcade subcutaneously. Just pop an insulin needle on the Velcade suringe and inject into the belly or arm. I'd be interested in hearing from those who have gotten subq Velcade: which treatment center do you go to and have you had any reactions to the injections?

Shawn

Re: Velcade via infusion or subcutaneous injection

by Pat Killingsworth on Wed May 18, 2011 3:13 pm

Hello-
I just switched to sub-q Velcade starting this week. I will share how and why we were able to make the change in my Thursday column, Pat's Place.

Sub-q has not yet been approved by the FDA. But study results are so promising a number of oncologists are starting to give it that way "off label."

My insurance paid for it--so maybe your doc and insurance company might agree to try it, too.
Good luck- Pat

Pat Killingsworth
Name: Pat Killingsworth
Who do you know with myeloma?: I am a multiple myeloma patient
When were you/they diagnosed?: April, 2007
Age at diagnosis: 51

Re: Velcade via infusion or subcutaneous injection

by nykrysia on Thu May 19, 2011 12:22 pm

Hello,
I agree with the previous comment. I know 100% this can be given in the United States SQ, This is being done currently. This should not be difficult. I know it's being given in NJ, AL, PA. Midwest With persistence you will find a provider who is willing to give this and please make sure they give as directed. Feel free to tweet me if any problems and I will try to help. Good Luck.

nykrysia

Re: Velcade via infusion or subcutaneous injection

by vickiandpaulkiser on Thu May 19, 2011 2:32 pm

My husband was diagnosed in 2005. He had a stem cell transplant which only lasted him 10 months. He had the Velcade infusion twice a week, and it did an awesome job! We were tired of making a 6 hr trip twice a week for it, so his oncologist said we could get it with a group where we lived. BIG mistake...they didn't listen to him when he told them his PN was really bad on a day he was suppose to get a treatment. They went on and gave it to him anyway, and his PN went off the chart! He really hasn't ever recovered that much, and that's been over 2 yrs. ago. Needless to say, we make our 6 hr trip now to Cleveland Clinic, and we don't complain. =) He is on his 3rd cycle of subQ Velcade, and so far, his PN isn't any worse. His Mprotein isn't going down as fast as they would like, so trying Cytoxan with it beginning this cycle. Other choice was dex, but every time he takes it, it plays havoc with his sugar levels. Hope the subQ Velcade works for you!

vickiandpaulkiser

Re: Velcade via infusion or subcutaneous injection

by mesg2mel on Thu May 19, 2011 10:38 pm

My mom was diagnosed in June 2006 at age 59 with multiple myeloma. She's currently on subQ Velcade (started in March 2011) with dexamethasone and doxil. We are at the Medical College of Virginia (MCV) in Richmond, Virginia. Dr. Edward Brent Perkins at MCV is her oncologist. The side effects (particularly the gastro-intestinal, nausea, and neuropathy) are significantly less according to my mom than the intravenous Velcade she had previously received. At the injection site (on her belly), she gets a silver dollar size rash that is red and slightly itchy and is gone within a week. SubQ Velcade is available in the USA. Definitely worth discussing with your doctor. Good luck to you!

mesg2mel
Name: Melanie
Who do you know with myeloma?: My mom
When were you/they diagnosed?: June 2006
Age at diagnosis: 59

Re: Velcade via infusion or subcutaneous injection

by nadia33 on Fri May 20, 2011 2:42 pm

I just asked a doctor from Columbia university about this and he said he is not sure if its safe yet... Which is sruprising based on what I'm reading. I'll ask another doctor from Sloan kittering cancer center also and see what she says.

nadia33

Re: Velcade via infusion or subcutaneous injection

by Susan on Sat May 21, 2011 10:34 am

How can patients find out where the subq Velcade is available? I am on maintenance following the UAMS MIRT protocol. I have had some neuropathy and my local oncologist will not give me any more Velcade . Any ideas?

Susan

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