[JaniceT]

Diagnosis may be plasma cell leukemia - confused

by JaniceT on Mon Nov 16, 2015 9:53 am

I went to the emergency room in late August mostly because of resting heart rate being elevated (110), general feeling of confusion, and just did not feel well. I was worried that it was my heart. Was not prepared at all for what I was told. I was in complete renal failure and anemic. Was admitted to the hospital and after CT scans and a bone marrow biopsy, I was told that I have multiple myeloma.

Started therapy in the hospital – Velcade, cyclophosphamide, and dex. Dismissed from hospital September 12. Continued with same therapy. Recently was referred to doctor at Moffitt Cancer Center in Tampa Florida to discuss an autologous stem cell transplant. When she went over the pathology report from my bone marrow biopsy, the pathologist had listed the diagnosis as plasma cell myeloma / leukemia.

The doctor at Moffitt will look at all my test results and will get back to me. She feels that, if this is plasma cell leukemia, that I would be better off with an allogeneic (donor) stem cell transplant.

I was just getting to know a little about multiple myeloma, did not expect to have a new diagnosis. From what I read on plasma cell leukemia, the prognosis does not sound good.

Are there any survivors out there?

[Multibilly]

Re: Diagnosis may be plasma cell leukemia - confused

by Multibilly on Mon Nov 16, 2015 11:03 am

Hi Janice,

Sorry to hear about this situation. There's no way around the topic...PCL is a pretty rare and serious diagnosis.

Gracie is a PCL survivor on the Beacon and she has been posting recently after a cord blood transplant (she couldn't find an allo match). See this link for her posts:

https://myelomabeacon.org/forum/search.php?author_id=2146&sr=posts

This is also a testimonial of a PCL survivor that did a tandem auto/allo transplant at SCCA.

http://www.seattlecca.org/patient-story/william-matthaei.cfm

[Little Monkey]

Re: Diagnosis may be plasma cell leukemia - confused

by Little Monkey on Mon Nov 16, 2015 5:05 pm

Sorry to hear as well, how fast are they thinking of doing an allo transplant?

[JaniceT]

Re: Diagnosis may be plasma cell leukemia - confused

by JaniceT on Tue Nov 17, 2015 2:57 pm

Thanks for the responses. I have heard from the doctor at Moffitt, and after going over all of my labs and tests, they have decided that is is myeloma, not plasma cell leukemia.

So I will be scheduled for an autologous stem cell transplant in January 2016. Feeling somewhat better about this than the thought of plasma cell leukemia and having to find a donor for an allogeneic stem cell transplant.

[Multibilly]

Re: Diagnosis may be plasma cell leukemia - confused

by Multibilly on Tue Nov 17, 2015 3:23 pm

Janice,

That's really great news! Multiple myeloma is clearly no picnic, but PCL is definitely a much worse diagnosis.

[BeatMyeloma]

Re: Diagnosis may be plasma cell leukemia - confused

by BeatMyeloma on Thu Nov 19, 2015 7:11 pm

Janice,

I still remember my mother's doctor coming into her hospital room in 2008 and saying, "I know how weird this sounds, but you JUST have myeloma!" They had originally thought that she had plasma cell leukemia.

So congratulations! Not that you have myeloma of course – that's awful – but it could be worse.