[BlueIvyHeart]

So scared for my mom - what is next?

by BlueIvyHeart on Tue Sep 02, 2014 5:32 pm

Hello,

I'm looking for advice for my mom on what to do next. She was diagnosed at age 49 in 2010. She had multiple lesions throughout her body at the time. She was given chemo by pills. I think it was Revlimid and dex. It didn't work so she had 2 back-to-back stem cell transplants and went into remission. We were hoping she would be in remission for at least 10 years but it didn't happen.

Her cancer is back and her collarbone is fractured and her arm is fractured and she needed surgery on it. She is in so much pain. All she does is lay in bed and cry from the pain . The pain pills aren't working.

We saw her cancer doctor last week and he said "I don't know what I'm going to do with you for treatment." That upset us! It's like he was saying well there's nothing else I can think of to do.

My mom is too young to be told that! I'm so upset. I can't live without my mom. I feel like my heart is going to explode and I'm going to collapse every time I think about it.

He said he's going to try a drug called pomalidomide.

I need to know if that drug will cure her or put her back in remission. Is there any other treatment besides the pomalidomide?

We are going to get her a second opinion. We're taking her to Memorial Sloan Kettering in New York City. I hope they can put my mom back in remission.

I want to be prepared. Is this the final treatment after Revlimid, dex and stem cell transplants? She had a back to back transplant already.

[Lev]

Re: So scared for my mom - what is next?

by Lev on Tue Sep 02, 2014 6:01 pm

Wikipedia has an article on pomalidomide. Here is the link:

http://en.m.wikipedia.org/wiki/pomalidomide

Sorry for not being able to do more. I hope your myeloma specialist will be able to explain and help.

[Mark K]

Re: So scared for my mom - what is next?

by Mark K on Tue Sep 02, 2014 7:12 pm

There are other options. See, for example, this posting here in the forum:

"Useful links to existing forum discussions"

RVD, CyBorD, Kyprolis, allogeneic (donor) transplantation, clinical trials, etc

Make sure you are seeing a myeloma specialist they will be more up to speed with the latest treatment options.

[gibby]

Re: So scared for my mom - what is next?

by gibby on Wed Sep 03, 2014 9:53 am

Hi All,

First of all I am glad you are seeking a second opinion.

There are a host of clinical trials available and an institution like MSKCC will have access to them.

There are multiple combinations available and I am not sure what your Mom has seen other than Revlimid / dex. However, MSKCC will also go through what combinations are available, what she has not seen and what may really help her disease.

After transplant was she on maintenance therapy? There is another new product due to be approved later this year (or early next year) and Pomalyst and Kyprolis (carfilzomib) are the newest thus far.

best of luck.

[mikeb]

Re: So scared for my mom - what is next?

by mikeb on Wed Sep 03, 2014 11:31 am

Hi BlueIvyHeart,

I am sorry to hear about your mother's relapse, broken bones, and pain.

There are lots of additional treatment options now for relapsed multiple myeloma patients. So this is not the end of the road for your mom, by any means. Your mom will be in good hands at Memorial Sloan Kettering. They are on top of the latest treatments. They have taken good care of me!

[BlueIvyHeart]

Re: So scared for my mom - what is next?

by BlueIvyHeart on Thu Sep 04, 2014 12:30 am

No, she was not on any maintenance therapy after the transplants. He just basically sent her home and every few months she'd go in for blood work to see if the cancer returned. She would be told she was cancer free and he'd send her on her way.

We thought she was still in remission until she began to get severe arm pain in her right arm. Long story short, she went to the hospital for the umpteenth time and, after a few visits and a biopsy, we found out not only had the cancer returned, it spread. Now why didn't her oncologist know this?! What the heck was the blood work for if they never detected the cancer?!

We're trying to get her away from her doctor now. He supposedly an "expert" in multiple myeloma, but he couldn't even detect my mom's cancer returning. Also, my mom's uncle in law was diagnosed with multiple myeloma and he was his doctor, and within a year from being diagnosed, he was dead. He was also fairly young (in his sixties). It just made no sense to me.