[Newtothis]

Re: Induction working great, then suddenly stopped working

by Newtothis on Sun Oct 04, 2015 10:59 am

I want to thank everyone here for the replies. I know everyone here has or knows someone who has also traveled this horrible journey. It really is an exclusive club that no one wants to join.

Dad's still in the hospital. They didn't find any blood borne infections, lungs are clear, his brain scan came back normal. We are still waiting on the urine tests.

I am at a loss at what's causing the confusion. His electrolytes were out of balance and his kidneys were off a little. Otherwise, nothing else explains it. The oncologist is waiting to see how he comes out of this before they decide anything, as his bone marrow biopsy showed "progression"'since July (which showed under 10 percent involvement).

HopeFaith7 I'm sorry to hear of your similar troubles. It's really difficult when the particular case of myeloma you are dealing with isn't acting like it "should."

I'll update on what happens.

[Little Monkey]

Re: Induction working great, then suddenly stopped working

by Little Monkey on Mon Oct 05, 2015 12:46 pm

Newtothis,

This situation really sucks

Two things though,

Has your dad ever been investigated by the oncologist for Waldenstrom's macroglobulinemia? The bleeding gums, carpentry work, and stomach pain are ringing alarm bells.

Here are some resources to look up for caregivers in the U.S.:

http://www.cancer.org/treatment/caregivers/index

[Multibilly]

Re: Induction working great, then suddenly stopped working

by Multibilly on Mon Oct 05, 2015 1:13 pm

Waldenstrom's macroglobulinemia is a disease involving the IgM immunoglobulin. This is an IgG monoclonal gammopathy. So, while I'm not a doc, I really doubt that WM is in play here.

[Little Monkey]

Re: Induction working great, then suddenly stopped working

by Little Monkey on Mon Oct 05, 2015 5:23 pm

Duly noted, I should be a bit more careful before make suggestions like WM

[Newtothis]

Re: Induction working great, then suddenly stopped working

by Newtothis on Mon Oct 05, 2015 6:02 pm

So what we've found out is his myeloma is refractory and aggressive. The hematologist basically told me there are options such as krypolis and another Revlimid alternative I am forgetting the name of. And if that works enough, immediately a stem cell transplant. He did however make it a point to tell me to be realistic and "it doesn't look good" and refractory myeloma is "really bad" so yeah, way to be hopeful. As far as I know in my research, many people with refractory myeloma respond well to a second line of treatment. He made it sound like "are you sure you want to subject him to this?" We are willing to try anything and as of now, dads creatinine is only 1.9 and his heart and vitals are good. No infection. Why would the hematologist make it sound like I shouldn't choose more treatment? Am I wrong in having a realistic hope this new treatment would work for him?

[Multibilly]

Re: Induction working great, then suddenly stopped working

by Multibilly on Mon Oct 05, 2015 6:44 pm

Newtothis,

The Revlimid "alternative" you are thinking of is probably Pomalyst (pomalidomide).

I would really underscore Cheryl's earlier comments and suggest that you seek out a top multiple myeloma specialist, even if it is 3 hours away. Keep in mind that this wouldn't mean that you would need to continually visit this other specialist after your dad has an initial appointment with him/her. Once your dad has a relationship with another specialist, that specialist can then remotely direct/suggest treatment options to your local oncologist.

Relapse and becoming refractory is unfortunately a common thing to expect with multiple myeloma....but it's not the end of the world and many folks on this forum do overcome becoming refractory (several times over the course of a life, in fact). Treatment under these circumstances is best directed by a specialist that works exclusively with multiple myeloma patients and knows which drug combinations to use at any given time in a patient's treatment journey.