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

Re: subcutaneous Velcade

by laetetia on Fri Feb 17, 2012 12:16 am

Ok. Paraprotein level increased to 14.7 again from 13.5 not good. Free Kappa up to 84.6 so increased again too. Asked doctor if he shouldn't be on 1, 4, 8, 11 regime for sq Velcade and he said yes. Would have been good if he'd done this in the first place !! Anyway, now doing this for the last cycle instead of once a week and then he wants a 21 day break. I did notice that most seem to get a dose of 1.3 or thereabouts each shot. My partner gets 2.5 or this last cycle says 3.5 ml for the once a week. Wants him to go on IV plus dex and cyclo something rather. Really scared of the IV since everyone seems to be getting the PN from it.

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

Re: subcutaneous Velcade

by suzierose on Fri Feb 17, 2012 12:59 am

hi Laetetia,

Sorry to hear your labs are not going in right direction.

With regard to PN, L-carnitine combined with alpha lipoic acid, seems to work well in ameliorating and abating PN.

You may want to start taking it now prior to IV bortezomib ...the only caveat they give is not to take on on same day as infusion. IOW's pre&post infusion seems to be OK to take it.

Hope you have better results soon.

suzierose
Name: suzierose
When were you/they diagnosed?: 2 sept 2011

Re: subcutaneous Velcade

by laetetia on Tue Feb 21, 2012 10:04 pm

Thanks. Will try and find it. Are they tablets ?

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

Re: subcutaneous Velcade

by suzierose on Tue Feb 21, 2012 11:30 pm

Hi Laeteia!

Yes. typically at Vitamin Shoppe or GNC...you can also find them on line.

suzierose
Name: suzierose
When were you/they diagnosed?: 2 sept 2011

Re: subcutaneous Velcade

by laetetia on Wed Mar 07, 2012 10:03 pm

Well, doctor says sq Velcade doesn't seem to be doing much. Nothing going down, although he was only on the 1, 4, 8, 11 cycle of injections for one cycle and before than only once a week, so I think its a bit early to judge. His doctor is determined to swap him onto IV on the same cycle and wants to add cyclophosphamide. His doctor has no other patients on Sq Velcade and although another doctor in the hospital does, he says they do not discuss results and basically he knows nothing about how the sq goes and he wants him on the IV and that is that. This specialist is supposed to be highly respected in his field yet he doesn't talk to the other doctors at the hospital and compare notes on the effectiveness of treatments ? Not very happy at the moment.

We were wondering whether to insist on another four of the 21 days cycles of the Sq Velcade to see if it works, or agree to go IV but ask him to leave the Cyclophosphamide off for now to see if the IV works on its own first.

As my partner still works he can't attend the support groups here as those meetings are in the middle of the day and we really haven't been able to talk to anyone else that might be a patient on sq Velcade to get an idea of what results others were getting.

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

Re: subcutaneous Velcade

by joecourtney on Thu Mar 08, 2012 11:52 am

I started sub Q a couple weeks before FDA approaval. Once a week 1.3 dose for 3 weeks then one week off. Very noticable difference. Reduced effect of neuropathy in feet, except for first day. On forth day when Dex has worn off I did feel the burning come back in feet and somewhat up my legs, but that gone by next dose. On IV the pain had begun to come up ankles making it hard to walk on second and third day.

So at first It seemed like the sub q at the least delayed the neuropathy, but now , after 2 plus cycles it seems to be helping more than that. My doctors admitted they were being too conservative by earlier resistance. I think your doctor may be an outlier in terms of his continued resistance. I am assuming that peripheral neuropathy is your concern.

By the way I did not realize anyone was still giving Velcade twice a week. After 5 cycles of Vel and dex the m spike was merely holding steady so we added 1200mg of cytoxin with the Velcade and dex and will find out later this month if it is working. Obviously I am not a doctor and do not know details or context of your treatment. Good luck standing up to your Doctor.See Pat K's recent blog about getting second opinions. Joe

joecourtney

Re: subcutaneous Velcade

by laetetia on Thu Mar 08, 2012 8:04 pm

Thanks Joe. I'm quite scared of the PN on twice weekly IV Velcade. I thought everyone was stopping this too. I'm not sure if we should be continuing with this doctor or going elsewhere. From what I'm reading the people on the Sq Velcade don't seem to be lowering their M spike by any significant levels. Here we get the Velcade free for 8 cycles but if you don't show a 50% drop in your M spike, you aren't allowed to have any more, which is why the doctor is starting to stress I think and wants to go to the IV, cytoxan option and hit it hard.

How long were you initially treated with IV Velcade ? Was it once a week ? How many weeks before the PN set in ?

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

Re: subcutaneous Velcade

by joecourtney on Thu Mar 08, 2012 10:43 pm

I had neuropathy in feet for 2 years before I was diagnosed in June 2007 with multiple myeloma. I took 4 cycles of 1.3 Velcade and dex as my induction therapy before Stem Cell Transplant in Oct. 2007. I went without any treatment for 30 months following SCT.

After trying Revlimid and pomalidomide for periods of time by late summer 2011 my m-spike was 2.7. In Oct 2011 we started Velcade again. 1.3 Velcade/dex - once a week for 3 weeks then 1 week off. After one cycle it cut m- spike in half, but neuropathy was bad so we reduced dose to 1.0. I should mention that for past 3 1/2 years I have been taking Gabapenten (300mg 3 time a day) for the neuropathy and it had helped to a degree.

My return to Velcade really spiked the neuropathy so on 2nd cycle we reduced dose to 1.0 and the m spike only dropped from 1.5 to 1.3. We did not know if it was the dose reduction or the myeloma's resistance to Velcade. I pleaded to go with sub q but both my docs were too conservative. This was November 2011. It was on 4th cycle (early January 2012) that we switched to sub q and then when neuropathy was less we brought Velcade dose back up to 1.3. I have had one blood result where m-spike held at 2.5 (it had increased over course of several 1.0 dose cycles)
I have now completed 6 cycles. 1 (most recent) has been Cytoxin -1200mg./1.3Vel/20mg dex)5 were just Velcade and dex. 2 have been SubQ , and the initial 4 were IV. Sorry to make it so complicated.
I can say that in my case the Velcade stopped working very well 2 or 3 cycles before we went to sub q. I have a specialist in nearby city who makes all the decisions -she is very open to my feedback -and my treatment is administered by local oncologist who welcomes the expertise from the specialist.
The evidence presented to FDA was pretty clear that Sub Q yielded same results as IV Velcade, but I suppose in an individual case it could be a factor. Likewise I thought it was established fact that once a week Velcade worked just as well as twice a week.

I should note that last fall I began taking a nerve support supplement (WSN Nerve Support Formula) It has massive dose of B12 along with Thiamine and B2, B6, some folic acid and D3) I take 2 capsules twice a day -with food - and it really helped after only a week. The burning changed to a welcome numbness. Recently I have added Acetyll-Carnitine & Alpha Lipoic Acid 650 mg twice a day, and it seems to have further reduced the burning. I get both at Amazon. The Nerve formula is expensive ($45. per month) but I was willing to try anything.

I would reccomend calling the IMF (international Myeloma Foundation) and they recommend nearest specialist to contact in your area.I would suggest being very confident in expressing to your doctor that you would feel more comfortable hearing another opinion.Good luck. I hope this helps? Joe

joecourtney

Re: subcutaneous Velcade

by Ron Harvot on Fri Mar 09, 2012 4:27 pm

Mama4242 wrote:
> My husband had terrible local reactions from the subQ Velcade. The first
> couple of times there was no reaction whatsoever. Then we noticed it was a
> little red at the injection site. The following week it was VERY red. It
> was about six inches all around and felt hot to the touch. It ultimately
> peeled. It was quite nasty. He then went back to the IV. After a few
> weeks, he tried subQ again--same thing happened. He was very disappointed
> because his neuropathy is far worse in his hands with the IV Velcade.
> Anyone else have this happen?

I am experiencing something very simiar. A widening red area around the injection site that flakes, like dry skin over time. I am applying cream to the area to keep it lubricated. It does not itch and is not painful but appears to be like an alergic reaction. I only get the SQ shots every 2 weeks so I am monitoring it and will inform my Oncologist when I go back in two weeks.
I started tthe SQ shots in January and did not notice this increasing red area with my initital shots.

Ron H

Ron Harvot

Re: subcutaneous Velcade

by laetetia on Fri Mar 09, 2012 6:07 pm

Don't you love computers ! In the middle of my post it decides to turn itself off then when I turn it back on it says it restarted the computer as it installed updates! Could have warned me first ! Anyway, here I go starting over.
Thanks so much for the detailed information. Its so great to have a site like this so people can share information and experiences so we can all make more informed decisions and compare notes.
My partner has big red splotches around each injection site for the sq Velcade. It was only when he went to twice weekly that he started to feel some pain at the site but he said it was mild and tolerable. It isn't flaky or peeling so he's handled it well.
He spoke to his doctor about doing IV Velcade alone without the cytoxan and then swapping back to sq after that to avoid risk or severity of PN. The doctor refused. We are in Sydney Australia and I don't know that we have specialist cancer centres here. I only know of one in Melbourne - that's a nine to ten hour drive from where we live. His doctor is well respected but reluctant to try new therapies. And then of course there is the funding restrictions. E.g patients are not allowed to have another therapy until they fail on thalidomide so the doctors have no choice but to prescribe thalidomide as a first treatment. Joe, it sounds like you have a hard time with the PN aspect. I'm glad some of the supplements help. I have my partner taking 1000 mcg of B12 - one in the morning, one at night. We noticed it did help reduce his m-spike initially, then keep it stable. If he stops, it goes up. At the moment his blood sugar level is all over the place (he takes tablets for diabetes), so we are trying to control that as its obviously affected by the Velcade. I noticed a few people in the forum have mentioned that after a time the Velcade seems to stop working. I'm not sure where you are but by Australian standards, 2.7 would not be treated so I'm thinking its probably equivalent to 27 on our readings. My partner's latest reading was 14.7. Two years ago it was 10.7. It doesn't seem to be rising in great numbers although it is rising faster than it has in the past 10 years. Ultimately we focus on quality of life, not just quantity but the government focuses on dollars and makes it hard to choose your own treatments if you want the financial aid.

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

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