When I was
first diagnosed with multiple myeloma, I couldn’t bear to go online and look up
information about the disease. I guess I
was just too afraid of what I would see.
Because I had access to world class treatment at the Seattle Cancer Care
Alliance (Fred Hutchinson Cancer Research Center) and at nearby Providence
Regional Cancer Partnership and I had complete confidence in my doctors, I made
a conscious decision not to go online and research multiple myeloma. I felt I could rely on their expertise until
I was brave enough to do my own research.
After radiation, chemo and a stem cell transplant, I had learned so much
that I was no longer afraid of what I might find online. I don’t always like
what I find, but I do have the strength to cope with it. Now, I am able to read about multiple myeloma
and the blogs of multiple myeloma patients. Clearly, I could never have imagined that
I would be writing a blog myself one day.
One thing I
discovered online is that before I was diagnosed, I didn’t have one symptom of
multiple myeloma. I have read over the
symptoms of the disease many times on various sites and the only symptom I could relate to was
shortness of breath. I have talked to my
oncologist about it because it has been very puzzling to me. He told me that shortness of breath in MM
patients is due to anemia. My shortness
of breath was caused by a large plasmacytoma that was growing in the pleura
around my lungs and the pleural effusion that it caused. Thank God for the plasmacytoma because the
plasma cells in my bone marrow were just getting started. I had no bone damage or kidney dysfunction or
any other symptoms of MM. My first bone
marrow biopsy showed only 10% plasma cells.
My doctor told me yesterday that I am a very unusual case in the way the
disease presented itself. I see the plasmacytoma as a
blessing because the disease had not become rampant in my body. It was just beginning. That was the good news. The not so good news, that I have mentioned
before, is the pathology from the first biopsy showed that I have high risk
myeloma. Without the plasmacytoma , who knows how far the disease would have
progressed.
QUESTION: Is there anyone else who
was diagnosed without any of the symptoms of multiple myeloma?
Yesterday, I
had my monthly appointment with my oncologist.
As usual, I was apprehensive about what the blood work would show. Overall, my appointment went well and my
doctor said I was doing fine. My counts
had gone down and that is always such a disappointment to me. I expect them to go up every month and
instead they go up and down like a Duncan yo-yo!
03/14/12 02/16/12
WBC 3.6 (L) 4.5
RBC 3.31
(L) 3.37 (L)
Hgb 11.6
(L) 12.2
Hct 33.9
(L) 34.7 (L)
Platelets 181 196
Absolute
Neutrophils 2.3 3.0
The light
chain numbers had not been posted, yet, and I pray that they continue to
“behave themselves” as my doctor likes to say.
Carole;
ReplyDeleteI had no symptoms until I developed a plasmacytoma in my back, then I was told I have Smoldering Myeloma. I still have no Myeloma symptoms. See my bolg for details at http://couldausedanotherday.com.
Scott
Scott,
ReplyDeleteThank you for responding. I am glad to hear you have no myeloma symptoms and I pray that it stays that way. I visited your blog and I think you have had enough to deal with already!
In the world wide scope of the blogging community, we are nearly neighbors! Marysville is just north of Seattle.
Best regards,
Carole Leigh