[Caro]

Problems with Velcade - need help

by Caro on Sun Jul 03, 2011 12:44 pm

Hello all,

My partner was dx with multiple myeloma in summer 2007, followed by induction therapy with Velcade, Dexa and Cyclo, auto SCT. First relapse in summer 2009, treated with radiatio followed by Revlimid. Stopped in 4. cycle because of bad rash. In Feb. 2010 progress showed by MRI of the pelvic bones. Velcade, Dexa, Caelyx [Doxil] 3 cycles. In Dec. 2010 lytic lesions at one shoulder and wishbone - radiation. In April this year he developped an egg size plasmacytoma over his sternum, verified by biopsy. Started radiaton again. Suffered with headache, MRT of upper cervical spine showed a big tumor inside, radiation too.

Afterwards developed further plasmacytoma on his chest. Meanwhile the light chains kappa and IgA increased too, so Velcade started on 27. May. Dosage: 1,3 mg/m² + Dexa 20 mg d1+d2. Velcade was given d1,d4,d8, d11. Thrombos fell from 117 at 27.May to 57 6.June, 32 9.June, 27 10.June. So they stopped Velcade until 20. June - Thrombos at 95.

Four days later again on 58. Next application of Velcade was on the 1. July. IgA fell, LC Kappa stayed, but he got two NEW plasmacytomas - one at his left breast, big as a ping-pong ball, one at the left cheekbone.

Our oncologist says he is a bit helpless, because they cannot give the Velcade often enough because of the thrombos, but the multiple myeloma progresses.

Carfilzomib in Germany is only available in randomized trials, so that will be of no use for my love, he needs treatment immediately. Does anyone have any idea, what can be done, do save his life for another while ? I am really desperate at the moment.

Helpless regards from Germany,

Caro

[Snip]

Re: Problems with Velcade - need help

by Snip on Mon Jul 04, 2011 5:04 pm

I'm no expert by any means (and not a doctor) so take this as just an opinion, but it sounds like maybe the Velcade isn't working... are there other novel agents available to you in Germany (Thalidomide comes to mind)?

[Jim5926]

Re: Problems with Velcade - need help

by Jim5926 on Mon Jul 04, 2011 10:50 pm

Hi Caro,

I am not a Doctor by anymeans but my Dad was refactory to Velcade and we added Vorinostat(off Label) because he could not enter a trail and it worked very well. Not sure if its availble to you in Germany but my dad insurance covered it gave him 16 months after failing Velcade. It is a pretty expense drug about $8000.00 for 14 days at 400mg. (21day cycle) Hope this helps.



Jim

[Boris Simkovich]

Re: Problems with Velcade - need help

by Boris Simkovich on Tue Jul 05, 2011 9:07 pm

Hello Caro,

I am very sorry to hear about how things have developed for your partner. I wish you had better news for us.

Please read the portion of this article,

https://myelomabeacon.org/news/2011/05/09/imw-2011-multiple-myeloma-update-day-three-part-1/ (in English)

https://myelomabeacon.org/deutsch/2011/05/09/imw-2011-multiple-myeloma-update-tag-3-teil-1/ (in German)

that discusses potential new treatments for myeloma. As you will see, there are at least two groups of new treatments that could be used together with Velcade to improve its efficacy -- the HDAC inhibitors (e.g., panobinostat and Zolinza [vorinostat]) and the monoclonal antibodies (e.g., elotuzumab).

As Jim5926 just mentioned, Zolinza already is being marketed in the United States and, I believe, Europe. However, it is not officially approved as a treatment for myeloma, but your partner's oncologist might be able to get approval for its use in this case.

Another potential new drug you also should definitely consider is pomalidomide, which is chemically related to Revlimid and thalidomide. Like carfilzomib, it has shown good efficacy in patients that have failed a number of other therapies.

For all the drugs that are still under development and not yet available for general use by oncologists, you should look to see if there are any clinical trials that might serve your needs, and you also should consider consulting with the medical affairs people at the companies that are developing the new drugs.

Please let us know if you have further questions.

Good luck!

- Boris.