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Any Idea? Going Crazy Waiting.....

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jennifer11me
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Subject: Any Idea? Going Crazy Waiting.....
Date: 10/09/2007

My sister who is 30 yrs old was diagnosed two years ago with Gardners Syndrome, a rare, genetic form of cancer which affects mainly affects the colon. She had her colon and a portion of her small intestines removed and underwent radiation therapy. She has been doing ok since other that the nonmalignant tumors she has throughout her body pushing on various nerves and she is in constant pain and takes heavy duty pain meds and cannot work or drive.

Over the last several weeks she has been under a lot of stress because she was facing the possibility of foreclosure on her house. About 5 days ago she started having a sore throat, which progressed to flu like symptoms. Last night she called me in a panic and said that she had bruises covering her whole body and that she was bleeding from her nose, eyes, gums, etc. So her symptoms came on quite suddenly. The doctor at the hospital admitted her as her platelet count was 6! He said the lowest he had ever seen was in the 50's or 60's. They were givin her platelets today and going to do a bone marrow biopsy as they felt that she had leukemia. Does anyone know if the radiation she received for her first cancer could be the cause of this? She has been a year and a half since the radiation was done. I read somewhere that the more sudden the symptoms and the lower the platelets, the worse the prognosis. Does anyone have any ideas on this. I live in Maine and she is in Florida and I don't know whether I should fly out there now or not. Any advice anyone has would be greatly appreciated.

One more question I had to pose to anyone reading this, a bone marrow transplant was something that she could possibly be looking at they told her. I know that they like to check within the family for the best possible matches. Does anyone know if it matters if we only have the same father but different mothers? Our blood types are the same so I am wondering whether or not, should the time come, that I be tested to see if I am a match. Didn't know if you had to be full blooded sisters or not.

Any info anyone could provide me with would be great. I will be talking with her oncologist and hematologist in a few days once the results are in but in the meantime I am wondering what she is up against.

Thanks! 

Doctor / Nurse
Doctor / Nurse
Oncrx
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Subject: RE: Any Idea? Going Crazy Waiting.....
Date: 10/10/2007
radiation induced leukemia usually takes longer to develop so that seems unlikely.  Its a little early to say what the actual cause is as other things could cause low platlets.  Do you know any other lab results (WBC, Hg/Hb, etc) ?  Let us know what the biopsy says.  A BMT may or may not be needed in a leukemia patient.  Many patients can get into remission with chemo alone and BMT's are usually reserved for refractory/relapsed  cases.  The best BMT donor is an identical twin, but from there the best HLA match is obtained from a sibling or perhaps from an unrelated donor.  Again, its a little early in the game to be worrying too much about such things.  Get a disgnosis first and then go from there.
Caregiver
Caregiver
jennifer11me
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Subject: RE: Any Idea? Going Crazy Waiting.....
Date: 10/12/2007

Thanks for your reply. An update on what has happened since I last posted. My sister's doctor told her this morning that her bone marrow is full of leukemia cells. They moved her from the regular hospital into a cancer care center in Clearwater, FL. They will know tomorrow the type, stage, etc. But they told her that she definately does have leukemia and that she is going to need chemo. Just waiting for the final info so that we can find out what kind, what treatment is going to consistof and what prognosis is. Doc was kind of rude and walked into her room while none of her family was there, told her with a smile on his face that it was certain that she had leukemia, and them proceeded to ask her how the book was that she was reading. Nothing else, just left. Not a good experience. Glad that they moved her to a cancer inclusive facility so that the nurses and the doctors deal with this daily and are a little more compassionate.

Will update with further info once it is available. One other thing I wanted to add was her most recent CBC, after numerous platelet transfusions is 17, WBC is 6, H & H is 10 & 21. I flew to Florida from Maine to be with her today and I have not been here long so I haven't been able to find out all the specific details that I need to find out.

Thanks,

Jen 

 

Doctor / Nurse
Doctor / Nurse
Oncrx
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Subject: RE: Any Idea? Going Crazy Waiting.....
Date: 10/12/2007

AML is most likely but the bone marrow biopsy will tell for sure.  The subtype is also important to determine treatment and prognosis.

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