[Madison]

Can't find a treatment to work, running out of options

by Madison on Thu Aug 21, 2014 7:59 am

I'm getting nervous, they're trying everything and nothing is killing the multiple myeloma cancer cells.

I'm going in fifth year. Had stem cell transplant 3 years ago, in remission, doing great. 1 1/2 years ago got stomach cancer. 75% of stomach removed, although only in 1st stage, lost 61 lbs, can't gain an ounce back, can't even find a gastro oncologist at Karmanos in Detroit who will do follow up care on me.

Yes, it's very scary! Cause I have problems and questions that go unanswered. That brought multiple myeloma back full force.

Multiple myeloma doctor has tried everything, nothings working or killing multiple myeloma cancer cells. Pomalyst, allergic reaction. Revlimid 25 mg was working, but had allergic reaction, dropped to 5 mg, wouldn't work. Kyprolis (carfilzomib) wouldn't work. Biaxin with 5mg Revlimid tore bowel and stomach up, had to go off, wasn't killing cancer cells.

Now on Cytoxan 20mg dexamethasone. Know by end of month if that's gonna kill cancer cells.
Neuropathy really bad. Anyone on this having problems with neuropathy and did you lose your hair?

\Madison

[Multibilly]

Re: Can't find a treatment to work, running out of options

by Multibilly on Thu Aug 21, 2014 8:38 am

So sorry to hear what's going on with you Madison. This really sounds like an incredibly tough fight.

Have you considered a clinical trial, perhaps with a monoclonal antibody like daratumumab? Monoclonal antibody regimens are showing that they may have minimal side effects.

There are many open clinical trials for refractory multiple myeloma patients. It might be best to consult with a top multiple myeloma specialist in the know to help narrow down your choices, if a trial is indeed an option for you.

http://clinicaltrials.gov/ct2/results?term=refractory+myeloma&recr=Open

[Nancy Shamanna]

Re: Can't find a treatment to work, running out of options

by Nancy Shamanna on Thu Aug 21, 2014 9:11 am

Hi Madison, I am sorry to hear about your problems with myeloma and stomach cancer. Have you tried drinking those high nutrient shakes such as 'Ensure' to try to gain weight. They are high in calories and also nutrients. I liked the vanilla variety, chilled in the fridge, when I couldn't eat much due to nausea during the time of my stem cell transplant. Do you eat many small snack type meals during the day since your stomach is smaller from the surgery?

And have you tried Velcade for the myeloma? I don't see it on the list, although you did try Kyprolis, which is in the same category of drugs.

I agree with MultiBilly that you should try to see a top myeloma specialist, who may be able to help you find new treatments too.

[Beacon Staff]

Re: Can't find a treatment to work, running out of options

by Beacon Staff on Thu Aug 21, 2014 11:45 am

Hello Madison,

We've very sorry to hear about the challenges you've had with treating your myeloma and with the stomach cancer.

As already has been suggested, a clinical trial may be a good option to pursue now. There are probably a number of trials being conducted at Karmanos, or at the University of Michigan, or in Chicago.

You can find a list of potential new myeloma therapies that are being developed at the top of the Beacon's news page,

https://myelomabeacon.org/news/

along with links to articles the Beacon has published about them.

Also, at the clinicaltrials.gov site that Multibilly referenced, you can do "Advanced Searches" that narrow the searches down to particular states. At this stage in your treatment, it is worth the time to learn how to use the Advanced Search functionality so you can narrow the searches. For example, this search will show you results of myeloma-related trials with locations in Michigan that are recruiting, and have "relapsed" in the title of the trial.

Best of luck to you, and please let us know if you have any further questions.