[kullybunnny1]

What tests should be done regularly 1+ year after SCT?

by kullybunnny1 on Mon Mar 09, 2015 12:49 pm

I'm celebrating my new birthday on 13 March and, as I move forward, I have a question.

I have a myeloma specialist at a major medical center where my transplant was performed. I also have a local oncologist who is at a satellite location for the medical center. Each month, I go for a CBC and CMP-ALERA, and then receive a Zometa treatment.

My question is: How often should I have other tests (SPEP, UPEP, etc.) done now that I'm going on more than one year after my stem cell transplant (SCT)?

I'm scheduled to see my myeloma specialist for my 1-year follow-up in September, which will actually make it an 18 month post-transplant visit. Each month, I query my oncologist the question: Are my results being monitored? He says yes, but I recently contacted the medical center about a prescription question, and they had to find my records. I worry each time I contact this medical center because they've reminded me in the past that I now have been released for treatment to my local oncologist.

I just want to know how far do I push to ensure my disease is being properly monitored.

Thanks for any assistance.

Kully

[Christa's Mom]

Re: What tests should be done regularly 1+ year after SCT?

by Christa's Mom on Mon Mar 09, 2015 6:48 pm

Hi Kelly,

Since EJ's SCT he has been seen by his oncologist every three months. At that time they run a more complete set of blood tests, and check his M-spike. Yearly they do a skeletal survey. Other tests have been done as needed. Depending on your situation, and how far you are from the specialist, you local oncologist can monitor you and send your reports to your specialist.

Good luck!

Carolyn

[Mark K]

Re: What tests should be done regularly 1+ year after SCT?

by Mark K on Mon Mar 09, 2015 7:33 pm

Hi Kully,

At 33 months after my ASCT, I'm tested every three months, twice a year at my local oncologists and twice at my myeloma specialist. Complete blood work including SPEP and IFE. It's been like this since the ASCT. My local has hinted that it may be excessive to test so often.

[kullybunnny1]

Re: What tests should be done regularly 1+ year after SCT?

by kullybunnny1 on Tue Mar 10, 2015 6:55 am

Thanks all for the response to my question/concerns. I want to clarify, though, my intent. My specialist is at one location, with my local oncologist being at the satellite office. I've had a difficult time recovering from my ASCT and sometimes feel my concerns are not being presented to the specialist.

I just want to ensure that the proper tests are being administered on a normal timeline. My local oncologist has in the past informed me that he's not a multiple myeloma expert, and I feel I upset him when I question if I'm being monitored as a multiple myeloma patient.

Thanks for any thoughts.

Kully

[Christa's Mom]

Re: What tests should be done regularly 1+ year after SCT?

by Christa's Mom on Tue Mar 10, 2015 6:46 pm

Hi Kullybunny1:

Sorry if I confused things! I looked back through your old posts, and realized that you and I had "chatted" in the past.

Could you clarify something for me? Is the specialist you speak of your SCT doctor? If so, you may need to find a myeloma specialist, and not just a SCT specialist. The doctor that did EJs SCT only does SCT's! I don't believe he sees or treats patients other than when they are going through a SCT. That may be why he keeps trying to refer you to your local oncologist. This could be the case even if he is with a major medical center, and part of their myeloma team / practice.

I think you should ask all parties involved for a recommendation for a myeloma specialist who treats patients outside of the SCT environment. This person should coordinate your treatment plan with your local oncologist, and if necessary, be in contact with your SCT doctor about symptoms arising because of your transplant.

If this is not the case, I apologize ... again ... for creating confusion! If I am wrong, it may be in your best interest to find a team who you can communicate with better.

Lyn

[kullybunnny1]

Re: What tests should be done regularly 1+ year after SCT?

by kullybunnny1 on Tue Mar 10, 2015 7:00 pm

Lyn,

Thank you for the advice.

He is a well known specialist and perhaps more focused on the transplant aspect. I will see if he'll allow another specialist to attend my case. I still need a warm fuzzy that my local oncologist is sharing my monthly results and receiving consultation.

Thanks again!

Kully