[jdelves]

Stem cell transplant center in Florida?

by jdelves on Tue May 24, 2016 1:28 pm

My husband, George, 58, was diagnosed in February 2016 with IgG multiple myeloma. By then, he already had 2 bone lesions.

He always had an annual physical with blood work, at least for the past 15 years. When he was suffering from extreme fatigue, his doctor ordered more blood work; his hemoglobin was at about 5. She sent him to the ER, and he was admitted for a transfusion (3 units). His blood was so thick, like motor oil, that they couldn't get accurate readings. He had plasma­pheresis, then the diagnosis was given. A total of 8 extremely uncomfortable days in the hospital.

He's starting the 4th course of chemo – Revlimid and Velcade injections plus Valtrex (vala­cyclo­vir).

We have Blue Cross insurance, which has paid most of everything. We had the coverage last year, but when we signed up again in November, we were switched to a lower-tier policy. Not even his primary care doctor accepts this Florida Blue Select policy, so he had to change doctors after 19 years with the same PCP. Healthcare.gov will not correct the plan, even though I called in January and was told they would change our plan February 1st. Called again in February and was told it would be changed March 1st. Now we have to wait until January 2017 to get a better plan.

The problem we now have is being able to find a transplant facility that accepts this policy. We have been trying to get the insurance company to add a local hospital to their list of providers / facilities, but are having no success.

He is now on a 12-day course of radiation on his thigh, where a lytic lesion was found during a CT scan.

Thank you to everyone on these forums for telling your stories, and giving us all hope.

[JimNY]

Re: Stem cell transplant center in Florida?

by JimNY on Tue May 24, 2016 2:01 pm

These are the centers in Florida that do autologous stem cell transplants:

Moffitt Cancer Center, Tampa
Mayo Clinic, Jacksonville
Sylvester Cancer Center, Miami
Shands Hospital, Gainesville
Florida Hospital, Orlando
South Florida Bone Marrow Stem Cell Transplant Institute, Boynton Beach

You will see people posting here in the forum regularly who have had transplants at Moffitt, Sylvester, Mayo, and I believe Shands. I do not recall anyone posting here before who had a transplant at Florida Hospital or South Florida Transplant Institute.

Another option to consider, if your husband is set on having a transplant, would be to have the transplant after first relapse, rather than immediately after his initial therapy. That would give you time to line up an insurance that would let you go to just about any transplant center.

[lrankin]

Re: Stem cell transplant center in Florida?

by lrankin on Wed May 25, 2016 9:52 am

Your situation is frustrating. We should be able to get the care we need when we need it. Some thoughts but I know my thoughts may be linked to your insurance frustrations and I apologize for that.

Are you seeing a myeloma specialist? If a myeloma specialist is not local to you, it is common for people to see a local hematologist/oncologist and drive to see a myeloma specialist. Myeloma is very specialized and you want someone who has a lot of experience with myeloma as part of your care team. While your PCP of 19 years is trusted, they are most likely not a specialist in myeloma or in blood-related cancers. I'm sure you would have wanted to keep that PCP as part of your care team, regardless.

Read the research on stem cell transplants. I think what I read is that a transplant would be recommended in the first year of diagnosis. So, you do have a little time. Fact check this.

Also, if you move forward with a stem cell transplant, you want a hospital that has a true com­petency in them. This is where I would hesitate to base my decision off who takes my current insurance - especially if you could do the transplant January of next year (within a year).

My intent is that I raised some issues for you to further explore. I am not a doctor.

[Aclinkboca]

Re: Stem cell transplant center in Florida?

by Aclinkboca on Mon May 30, 2016 10:26 pm

I wish you the best. I just went through a stem cell transplant with Sylvester Cancer center at the University of Miami in Miami. I highly, highly recommend Sylvester. The treatment and care I received there could not have been better. On the insurance, my insurance too on paper did not accept Sylvester, but after talking with the transplant group, they accepted Sylvester and paid 100% of all the cost.