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

Subcutaneous Velcade

by laetetia on Thu Oct 13, 2011 12:47 am

Just wondering if anyone was taking the subcutaneous option and how they were going with it. My husband has to start taking Velcade in a couple of weeks. Thalidomide brought his levels down but only while he was taking it. The minute he stopped they shot up again. He was scared of the neuropathy. . The doctor was all for the IV Velcade once a week (at this stage without any dex or chemo) but the peripheral neuropathy is an issue as my husband regularly plays keyboard in a band. I told him, in light of the recent French studies, there didn't seem to be a big gap in time to progression between IV and subcutaneous and that the subcutaneous will probably give him better quality of life, due to less severe side effects. His doctor has agreed to let him try it. So wanted to know if anyone was taking it and if so, what side effects they were experiencing and how severe.

laetetia
Who do you know with myeloma?: De facto
When were you/they diagnosed?: 2001
Age at diagnosis: 53

Re: subcutaneous Velcade

by Beacon Staff on Thu Oct 13, 2011 9:55 am

Hello laetetia,

Thanks for posting your question and some of the background information to it.

In case you haven't seen it already, you may find helpful this recent article about subcutaneous Velcade that was published here at The Beacon:

https://myelomabeacon.org/news/2011/09/02/subcutaneous-velcade-bortezomib-information-for-multiple-myeloma-patients/

Also, this previous discussion here in the forum may be helpful as well:

https://myelomabeacon.org/forum/velcade-via-infusion-or-subcutaneous-injection-t412.html

Good luck!

Beacon Staff

Re: subcutaneous Velcade

by laetetia on Thu Oct 13, 2011 8:22 pm

Yes, thanks. I had read these which is why I pushed my husband to try the subcutaneous route. When he asked for it his doctor said nothing about it not having approval yet. He just said ok. We are in Australia. I guess we'll just have to see how effective it is. His doctor said there was no proof it was as effective as IV so I'd sent him the information from the myeloma beacon as per your first link about the French study. Will keep you posted about how it goes. Most of the posts by people date back May - July so was just wondering how things were going.

laetetia
Who do you know with myeloma?: De facto
When were you/they diagnosed?: 2001
Age at diagnosis: 53

Re: Subcutaneous Velcade

by xstemboatr on Tue Oct 18, 2011 12:30 pm

My husband had issues with PN getting Velcade the traditional IV way ... so, they switched him to the subq method. Unfortunately, it hasn't helped. I would say he was given approximately 4 injections. Now he's on gabapentin to hopefully relieve the neuropathy. Plus, he no longer takes Velcade - only Revlimid/Dex (21 days on; 7 days off). Noone's body makeup is identical - everyone responds differently to all the different combinations that are currently available to multiple myeloma patients & doctors ! I guess we just have to hope that eventually the doctors, through trial and error, will be able to match each patient to the right combination of drugs, dosages, & frequencies. That would be a perfect world.

xstemboatr

Re: subcutaneous Velcade

by Dr. Peter Voorhees on Tue Oct 18, 2011 5:58 pm

Dear all,

The subcutaneous approach has been a very useful advance for patients with myeloma requiring bortezomib-based treatment. Our experience has been very much in line with what the French study reported. Equivalent efficacy and significantly less problems with neuropathy (but neuropathy still remains a risk). I think it is a terrific way to go and would support that approach.

Best of luck and let us know how it goes. May the band play on!

Pete V.

Dr. Peter Voorhees
Name: Peter Voorhees, M.D.
Beacon Medical Advisor

Re: subcutaneous Velcade

by mlweezieclark@yahoo.com on Wed Oct 19, 2011 9:46 am

for me it's been great quicker no hunting for a vein no having a port just a quick shot and a little uncomfortable pressure when Velcade goes in notice very limited tingling compared to when I had the infusion. ml

mlweezieclark@yahoo.com

Re: subcutaneous Velcade

by laetetia on Fri Nov 11, 2011 1:43 am

My husband only just started on his first shot of subcutaneous Velcade today. They insist that he has to have it done at the hospital for the cost to be covered. Apparently if he administers it himself at home, he has to pay the full cost of the medication. '

Will keep you posted as to how he goes with it.

laetetia
Who do you know with myeloma?: De facto
When were you/they diagnosed?: 2001
Age at diagnosis: 53

Re: subcutaneous Velcade

by laetetia on Tue Nov 15, 2011 9:51 pm

Ok. The day of the injection they also gave him an anti nausea injection. He didn't feel totally right and was a little drowsy at night but mostly ok. Day 2 he felt numbness in his feet. I massaged them a bit. Day 3 he felt tingling and numbness in his fingers but his feet were ok. Day 4 that also disappeared and he was ok. Day 5 he started complaining of jaw pain and still said it hurts a lot this morning. He has previously had osteonecrosis from the bone strengthing treatment they gave him after his stem cell transplant in 2001 and he ended up having them cut away a bit chunk of his jaw.

He has not been taking the anti nausea tablets at all as he hasn't needed them. So he's on Velcade and he takes one tablet of Valacidovir RBX 500 mg a night. One of these seems to be affecting his jaw.

laetetia
Who do you know with myeloma?: De facto
When were you/they diagnosed?: 2001
Age at diagnosis: 53

Re: subcutaneous Velcade

by ninja performance on Wed Nov 16, 2011 10:33 am

I just finished my 5 cycles of VDR. I was getting Velcade SubQ at 1.7. Very few problems. Slight tenderness after the 4 shots of the cycle (Monday/Thursday/Monday/Thursday).

I did get PN in hands and feet but just burning mostly and only cycle 3/4/5. It also would go away on my off week and has since vanished since I am on chemo vacation waiting for stem cell first of the year.

-Chris

ninja performance
Name: Chris Hill
Who do you know with myeloma?: Self
When were you/they diagnosed?: 08/04/2011
Age at diagnosis: 43

Re: subcutaneous Velcade

by laetetia on Wed Nov 16, 2011 10:58 pm

Thanks Chris. Sounds like you are handling it really well. My partner didn't take any medication at all for the multiple myeloma except painkillers for 10 years after his stem cell treatment.

I've got him to stop taking the Valaciclovir RBX in case it was that affecting his jaw as it had side effects listed that indicated it could do this, however, he is still experiencing bad jaw pian today. Don't know if the Velcade maybe affects it. Other than that he isn't experiencing any side effects any more. Gets his second shot tomorrow.

laetetia
Who do you know with myeloma?: De facto
When were you/they diagnosed?: 2001
Age at diagnosis: 53

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