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my baby sister recently diagnosed (44 yrs old)

butlerdebbie's picture
butlerdebbie
Posts: 6
Joined: May 2008

hello to all. my 44 yr. old sister(a nurse), was diagnosed with nhl. it grew out from her lingular tonsil and has neck, armpit, groin and belly nodes involved. we've had 2 opinions. first onc. said"would only be an inconvenience for her", but ordered pet scan with not so good results. hillman center in pitts. was 2nd opinion. she had a muga scan, bone marrow aspirate and was ordered her tx. regime. rchop, every 3 weeks, for 6 cycles. she had the antibody last wed. chemo on thursday, followed by neulasta on friday... we are still awaiting the bone marrow results... she(of course is devastated), as well, as all of the family... her only symptoms, were a change in her speech and fatigue, and then she discovered her enlarged tonsil. then came the fateful biopsy... i have so appreciated all of your postings, as they have helped me to understand a little better. i have also been all over the net. some articles say"no cure", yet some of her medical practioners do indeed say "the word cure". i'm so confused:(:( we were surprised to hear the results of the spreading, from the pet scan, as we thought it was localized in her tonsil and neck nodes only???? any info. would greatly be appreciated. she gets round 2(21 days from now)... rchop... thanks so much, debbie (butler, pa)i guess we now need to ask about staging???????

winthefight's picture
winthefight
Posts: 162
Joined: Dec 2007

Hi Debbie,

What a blessing you are to seek help about your sister. Like your sister, I had the necessary tests: PT/CT, Muga,bone marrow biopsy (fun), and probably others that I can't remember right now.

I was 42 years old when diagnosed with stage 4b NHL. I had it in the upper and lower parts of my body including my liver and spleen.... I had R-Chop treatment as well. After the second tmt, the onc noticed a difference...the liver and spleen had decreased in size quite a bit. I am saying all of this to tell you I have been told by many med profes, if you are to get cancer, this is the one to get (if that makes any sense). It is treatable. And, to say I had great results from R-CHOP. Because my wbc (white blood counts) were low, I also had to return to the dr office for the neulasta shot.

There is a lot of discouraging information out on the web. Please becareful when doing your research. I found that anything with the .gov had given me a bunch of gloom and doom. It was very depressing.

Rituxan with the R-Chop is a good combination when treating this disease.

The ACS has a 1800 you can call 24 hours. They have an excellent book: 100 questions and answers about lymphoma. It is an excellent book explaining stages, different trmts, side effects, just about any question you may have.

Fatigue is one of the things she will experience. I can understand her devistation. It is a tough pill to swollow. But this disease is treatable. I chat with two other NHl survivors who are now in remission. Your sister is going to need a strong support team helping her with every area of her life. Rent her funny movies, get someone to take walks with her (if it ok with doctor). Get her involved with a support group. Find another support group for the family. There is another organization that may be able to help you understand and also provide classes to help with different things: The lukemia and lymphoma society. If she is not working, someone please call her during the day. She is going to need that.

I hope this helped. Please feel free to email me through csn with any questions and updates.

Thanks and take care.

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