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Thread: New Dx of FNHL, 6/10/19

  1. #21
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    Good article on Rituxan

    Here is a link to a good, recent article about the history, biology, and uses of Rituxan. Thereís a section on FL midway through

    https://www.frontiersin.org/articles...018.00163/full

    Cheers,

    Jim
    Last edited by JiminPdx; 06-29-2019 at 06:43 PM. Reason: Emoji where there should be none.

  2. #22
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    Good phase 1 results for new treatment strategy from November 2018 New England Journal.

    This is promising news about a possible future state treatment. It concerns the use of a completely different antibody to help Rituxan work better. This new antibody targets macrophages, and motivates them to attack the B cells that Rituxan has flagged. This was a trial in DLBCL and FL , for people who were mostly Rituxan resistant.

    https://www.nejm.org/doi/full/10.105...iting_articles

  3. #23
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    Hi Jim,

    Great selection of articles - thank you for sharing.

    The second one suggests one among many new options that offer plenty of hope for years down the road… Hopefully we will never need to face that many relapses! Still, it's good to know that research is active in all directions.

    I hope your hematologist appointment goes well and brings nothing but good news. Do keep us posted.

    PBL
    06/2015 - Spontaneous pelvic fracture after 8 years of unexplained left hip pain
    02/2016 - 52 y.o. - Final Dx: Grade 2, Stage 4 Primary Bone Follicular lymphoma
    TTT - 6 R-CHOP21 (03-06/2016) + Maintenance Rituximab (08/2016-04/2018.)
    Currently in remission - Semestrial scans+mris & follow-up appointments with hematologist.

  4. #24
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    Lymphedema advice?

    Hi folks. Iíve developed a lymphedema in the leg that underwent the lymph node biopsy. Did anyone else develop this complication? Curious to know if it went away, and if it has had any significant impact on your level of activity and quality-of-life long-term

    I have my bone marrow biopsy next Thursday. Iíll get the results the following Friday. Itís being done at a national cancer center (OHSU) with a drill. Iíll keep you all posted about the results, which obviously have enormous significanceó stage one versus stage four.

    Iíve been in contact with my ďbuddyĒ from the lymphoma and leukemia Society. Heís a very nice guy who lives about 100 miles away. Heís very encouraging, and heís had a great result ó heís been symptom-free for seven years!

    Jim
    Last edited by JiminPdx; 07-13-2019 at 05:02 AM. Reason: Typos. Again.

  5. #25
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    Does anyone here know much about concurrent Myelodysplasia and FHNL? I know that chemotherapy can induce myelodysplasia years later, but Iím talking about concurrent initial diagnosis with both, prior to any treatment.

  6. #26
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    Wow, some great reading there! Much appreciated. My 2-year Rituxan maintenance therapy for FL wraps up at the end of the year. Hoping this newer data remains solid--and newer better comes on line soon.

    My 18-month post-RCHOP CT is next week.
    Age 55 at Diagnosis
    6/2017 - Fell off a ladder. Incidental finding
    7/2017 -CT shows "Innumerable" enlarged nodes up to 2.2cm in mesentery, retroperitoneal, mediastinum, SCV node. No symptoms blood work normal--including LDH.
    7/2017 - Biopsy confirms Lymphoma of Follicular center origin WHO 1-3a. Also some diffuse areas highly concerning for DLBCL.
    7/2017 - PET confirms Stage III. SUVs to 9.3. Bone marrow biopsy negative. Remain Stage III.
    8/2017 - Begin RCHOP 21. Neuts to zero after treatment. Neulasta moving fwd. Neuts rebound.
    10/2017 - Mid point CT shows treatment effective. RCHOP continues.
    11/30/17 - RCHOP concludes
    1/2018 - PET shows zero SUVs and complete response to treatment. Rituxan maintenance begins
    7/2018 - CT shows NED. New coronary artery calcification to be investigated.

  7. #27
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    Update: bone marrow is negative for lymphoma, and today, after several weeks, the Genetrails test ruled out MDS. ( which doctors thought I might have) I need to decide whether to get inguinal radiation. My lymphedema is painful and I am greatly worried about the risk of making it worse with radiation. But of course if I donít do it I will eventually end up needing chemo etc. I meet with a radiation oncologist soon, and I go to Fred Hutchinson/Seattle Cancer Care Alliance in early September for another opinion If anyone here has coped with lymphedema, it would be great to hear your perspective

    My best wishes to those of you coping with much worse than Ió Iíll be checking checking daily for updates .

  8. #28
    Hi Jim,

    Just wanted to say hello and offer an ear if you ever want to talk. Iím am in remission from HL, so I canít really talk specifics with you, but I live in Portland and was treated at Kaiser. I am currently going through my own bout of panic and anxiety. It never seems to fully go away and is something I deal with about once a year. Talking with others has always helped me. If you believe it will help you too, please reach out.

  9. #29
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    Today, I turned down radiation therapy to my infuinal area. It would have extended my progression free survival as long as 10 years, and possibly ďcuredď me, But the thought of worsening my lymphedema, and coping with the resulting chronic leg pain, swelling, and the hours of management every day that they would require Ė that is too much for me. There are so many things I want to do with my life that would be impossible with a higher stage of lymphedema. Both my oncologist and my radiation oncologist support my decision, though one of them described it as a horrible choice to have to make.

    So for now, I will focus on getting back to my regular life Ė to the degree I can since I have to elevate my legs several hours a day. I still want to walk the route of Saint James in Spain to the pilgrimage city of Santiago. Thatís around 400 miles.

    I will continue to monitor this forum regularly, both for treatment news and for your updates. Youíve all been a wonderful support, and please donít hesitate to contact me if I can return the favor.

    Cheers

    Jim.

  10. #30
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    Very best with recovery therapy. Truly hope you are able to make that pilgrimage hike!

 

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