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Survived more than 30 years
My sister has been a hystiocytic large cell non hodgekins lymphona survivor for 35 years. I am searching for a research group that has some answers to the effects of the radiaton. She has had over 6000 rads of radiation and it is taking it's toll on her. Need to find a doctor to help her out of the constant pain she is in…
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San Franciso T-Cell patient education seminar June 8th, 2019
The T Cell Leukemia Lymphoma Foundation will once again be presenting a patient education seminar in San Francisco, California. It will be held on June 8th, 2019 at the Hotel Nikko in downtown San Francisco. The primary speaker will be Dr. Andrei Shustov of the Fred Hutchinson Cancer Research Center. This is a great…
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Marginal Cell
Hi New to site. Diagnosed end of 2014 with Marginal Cell lymphoma Stage IV, had Rituxan felt good after 4 doses and Igm came down. Have had 2 episodes since then one treated with Imbruvica and latest one with another 4 doses of Rituxan did not feel to good on either. My question is has anyone experienced brain fog.…
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Diagnosed with Diffused large B cell lymphoma
I'm a 58 year old male just diagnosed. Three months ago I was minding my own business and went to my PCP for a regular checkup.he noticed something weird about my heart and pulse and ordered an echocardiogram. They found a dilated ascending aorta and a regurgitant aortic valve. CT scan subsequently confirmed this. After…
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A whirlwind since January 2019
I was diagnosed out of nowhere in January 2019 with NHL. The first 2 chemo treatments were a disaster as other things went wrong due to the chemo. I was hospitalized for 2 months, then sent to a nursing home for 2 months and I got home April 15. I have now taken 4 or the scheduled 6 chemo treatments. The third and forth…
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MCL with a serious skin reaction after Bendamustine...later found to be allergic to bactrium
My 67 year old brother was diagnosed with Mantle Cell Lymphoma back in January. He has had two treatments of Bendamutime/Rituximab (sp). He had started to get a little itchy after the first treatment, now with the second, he has developed a terribly itchy rash on his arms and back. This has been going on for about 10 days.…
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T - Cell Lymphoma of the Small Bowel (specifically in the Jejunum)
Hello, My husband was diagnosed in March with T-Cell Lymphoma of the small bowel. It has been narrowed down to a very rare type, abbreviated as MEITL. It is very aggressive and prognosis is poor. However, we are getting treatment through Stanford's Lymphoma Clinic in Palo Alto and we feel confident he can beat this - it is…
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Dropping in to say "Hi"
Hi guys. I haven't been on here since after we moved to Oregon in 2014...sorry ...I just got busy with my husbands retirement and our new location. Not a good excuse, but the truth. We decided to move back to Washington in Oct 2018 to be closer to the family. I relapsed twice while in Oregon, was treated with Rituxan and…
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Just diagnosed-feelings & thoughts
Received the results of my biopsy yesterday, classical Hodgkins lymphoma, nodular sclerosis subset. I didn’t cry, I didn’t take a seat, I just stood there, felt numb. maybe my mind is still processing the news? Or my mind is fending off the reality of what is to come... im a 34 year old male who noticed a lump near my left…
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The Chaplain
Yesterday, I went for a 6-month follow up visit with my hematology oncologist. One of the first stops was the lab to have blood drawn. They always draw 3 vials--CBC, Metabolic Panel, and LDH. While the phlebotomist had a needle in my arm, this goofy acting man came into the lab and slapped her on the shoulder with a jovial…
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Primary Mediastinal B Cell Lymphoma or Double Hit?
43 years old and I was just told on 4/22/19 that my Primary Mediastinal B Cell Lymphoma was in complete remission after 6 rounds of DA-EPOCH-R, but have been referred to a stem cell transplant team for a consultation. My oncologist has never used the term "double hit" until the referral. Wouldn't they have diagnosed me…