[Anni]

Is my father really out of treatment options?

by Anni on Fri Oct 21, 2016 2:15 pm

Hello,

My name is Anni. I am here on behalf of my dad. He is now 64 years old. He is in St. Petersburg, Russia.

In May 2003 he was diagnosed with multiple myeloma stage 2A. He has been through a lot(!) of treatment, which resulted in a full remission a few times. In 2008 the doctors suggested the bone marrow transplantation, but he refused as he had had a heart attack (poor heart con­dition).

December 2015 he started hemodialysis. He has been having troubles with kidneys since 2014. Now the illness is progressing as never before. Low hemoglobin, platelets, low level of RBC, high level of calcium in blood, lytic lesions in bones. He is feeling very bad, to say the least.

The doctors say that given the illness, 13 years is a great result. And at this point there is no point in undergoing any other treatment.

Me and my mom (who is by his side 24/7 and is taking care of everything, speaking with the doctors and doing all she possible can and cannot) of course want him to live longer, and it is hard to believe that there might not be anything else to hold on to.

So I guess we are writing this just to get your feedback and input about any options we may have.

I myself am living in Berlin at the moment, but my parents are in Russia and don’t speak English so I will be the middleman

Many thanks for your time and all best.
Anni

[GaryH]

Re: Is my father really out of treatment options?

by GaryH on Sat Oct 22, 2016 10:41 am

Sorry to hear of your family's woes.

First thing I would like to say is don't ever give up! It's so important to keep up a positive attitude. Second, is there any way you could get a second opinion from another doctor?

I have been living with this for coming up to 19 years now and have had all sorts of treatments. The thing is, they work for about 1-2 years, then the myeloma does an end run around the drugs and comes back again. So far there has been another drug to take that deals with it. But these are, after the approved drugs ran their course, clinical trial drugs that do work for the most part until the myeloma comes back. Ask if any trials are available.

Best wishes, Gary

[Anni]

Re: Is my father really out of treatment options?

by Anni on Sat Oct 22, 2016 1:18 pm

Hi Gary,

Thanks so much for answering - really appreciate it. Love your attitude!

Yes, there are loads of treatments that he never tried out, but the doctors say that dialysis is sort of in the way of trying out other treatment options. Revlimid, for instance, is definitely not an option anymore, because of dialysis. And they are also extremely against bisphosphonates that could lower his calcium level, also because of dialysis.

He might be prescribed carfilzomib (Kyprolis) later on, but for now I think they are switching to bendamustine, without Velcade, as he has horrible breakdowns at the moment. Is crying, is refusing to do dialysis, and so on.

Thank you again and with all best wishes from a freezing Berlin.

Anni

[Little Monkey]

Re: Is my father really out of treatment options?

by Little Monkey on Sat Oct 22, 2016 2:25 pm

Which treatment regimens has your father had so far?

Is travelling to Germany or Finland for treatment an option?

[Anni]

Re: Is my father really out of treatment options?

by Anni on Sun Oct 23, 2016 7:11 am

Thanks for answering!

He was diagnosed in October 2003. Got 9 sessions of VCMP (vincristine, cyclophosphamide, melphalan and prednisone), then 3 more VCMP plus Reaferon (interferon).

2007 had no treatment.

2008 it came back again, he started Velcade and dexamethasone (VD) therapy. After 7 sessions he had full remission. Then he had a supporting VD therapy once every 3 months.

2012 - recurrence. Then he started Thalidomide and dexamethasone. In half a year he had an almost full remission.

Then in like a year Revlimid got available in Russia, so he went on with Revlimid and dexamethasone.

Well then his kidneys started to act out, so he went back to Velcade anddDexamethasone.

Last December he started hemodialysis, and then since myeloma was progressing they started Velcade plus dexamethasone plus thalidomide 200 mg (he wasn’t prescribed Revlimid because of kidney failure). In 2 sessions M-gradient lowered from 28 g/l (2.8 g/dl) to 7 g/l (0.7 g/dl). Because of the treatment he developed neuropathy so they stopped with the treatment for a month, which resulted in M-gradient skyrocketing from 7 to 34.

Now he is a really bad condition: lost a lot of weight, not thinking clearly because of the high calcium level, is annoyed and angry-ish all the time, always sleepy, can’t stand for a long time.

He is taking antidepressants but they hardly help.

Forgot to mention that in the very beginning he took Zometa (zoledronic acid), which resulted in phossy jaw (osteonecrosis of the jaw), so he quit it.

Many thanks for reading, dear everyone!

I wish you all best and am sending a lot of positive vibes!

Anni

[TerryH]

Re: Is my father really out of treatment options?

by TerryH on Mon Oct 24, 2016 11:34 am

Anni,

Kyprolis (carfilzomib) and Pomalyst (poma­lido­mide, Imnovid) may be options worth con­sider­ing for your father, and they may be approved and reim­bursed in Russia. Kyprolis is in the same class of thera­pies as Velcade, and Pomalyst is in the same class of therapies as thalido­mide and Rev­limid. Given that your father has been treated with both thalidomide and Rev­limid, he may be less likely to respond to Pomalyst than to Kyprolis.

Other options would include Darzalex (daratumumab), Empliciti (elotuzumab), Ninlaro (ixazomib), which are approved in the U.S. and in many cases also in other countries, but which may not be approved and reimbursed in Russia.

Here is a list of clinical trials in Russia for relapsed myeloma patients:

https://clinicaltrials.gov/ct2/results?recr=Open&cond=relapsed+myeloma&cntry1=NS%3ARU

Note that there is an "early access" program for Darzalex, and it has a location in St. Petersburg.

I hope your father and his doctors are able to find an option that works for him. Good luck!

[Anni]

Re: Is my father really out of treatment options?

by Anni on Mon Oct 31, 2016 11:26 am

Thank you so SO much everyone for answering, I appreciate it a lot.

With all the best wishes,
Anni