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Thread: One haploidentical transplant experience (ongoing)

  1. #871
    Experienced User
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    Jan 2015
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    My Goodness! I hope you are feeling better. I stopped taking all Prednisone at Christmas. I decided I only need to take it if I have a flare. So far so good! No flares yet. This is 4 and a half years after Allo. So hopefully you will continue calm your GVHD as well.

  2. #872
    Super Moderator Top User po18guy's Avatar
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    Feb 2012
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    That is great news! It gives me hope. We'll see. Oh, and see you at the seminar August 31st?

  3. #873
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    Iíll definitely be there 😀

  4. #874
    Well done, Allison. 4 1/2 years is great! I'm aspiring to follow in your footsteps, but got ways to go to get there!

    David
    67 yrs old
    March 6, 2012: Diagnosed Anaplastic Large (T-) Cell Lymphoma, Stage 1 (ALK-)
    3 rounds of CHOP unsuccessful.
    Beginning mid-June, 2012, received 6 cycles of Brentuximab at Huntsman Cancer Institute, University of Utah. Autologous bone marrow transplant in November of 2012.
    17 radiation treatments for "consolidation" purposes between Dec. 26 and Jan.17.
    100 day post BMT check-up (2/26/13): NED. Pet scan on 7/10/13: Still NED.
    One year post transplant check-up: Still fine; NED.
    18month post-translant scans, etc. All fine, save a bit of arthritis.
    11/14/14: 24 month post transplant check-up--still NED.
    5/15/15: No NED this time. Relapse confirmed/ started every 3 week brentuximab
    Allo transplant in Feb 2016.
    100 day post transplant scans in June 2016 fine.
    3 yr. post SCT check up: all fine, no issues.

  5. #875
    Super Moderator Top User po18guy's Avatar
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    Quote Originally Posted by David52 View Post
    Well done, Allison. 4 1/2 years is great! I'm aspiring to follow in your footsteps, but got ways to go to get there!

    David
    Good to hear from you! Hey, meet us in Honolulu! OK then, how about San Fran June 8th?

  6. #876
    Senior User
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    Oct 2013
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    222
    Normal substandard numbers is great!!! No bone marrow biopsy for you I hope this is hopeful news.
    All my best I have to give.
    Zorro
    Age 61
    diagnosed March 20 2013
    High Grade Non-Hodgkin Diffuse B-Cell Lymphoma w/some Burkitt like cells involved
    PET showed spots on liver and enlarged spleen w/hot spots all over Lymp areas
    Treatment started Martch 29 2013 R-ECHOP 6 rounds (1 week on 2 wks home)
    Spinal tap w/chemo for insuarnce (clean spinal fluid)
    neulasta shot after R-ECHop treatment
    June 29 PET clean
    Sepr 12 PET clean
    Nov 11 2013 melanoma removed from back all clear margins 7 inch cut
    Nov 25 confirmed MRSA infection and cleared up with bactrim
    Dec 16 still waiting for wound to close and heal (on his lat and he works out)
    wound from melanoma healed and infection gone, great war scar now
    Cat Scan Dec19th scan was clean
    Feb 20th Ct came back NED "NO ENEMY DETECTED" WHEW!!!
    May 20th 2014 NO ENEMY DETECTED!!!!!!!!! CT clean
    Aug 12 Bloodwork came back as doing what it should be doing. Cat scan in Nov.
    Oct 08 2014 tested positive for hyperthyroid. testing this week to find out more.

  7. #877
    Super Moderator Top User po18guy's Avatar
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    Thank you very much! Another BMB is no biggie. Doing it in a search for two suspected marrow cancers - not so much. Since my blood numbers rebounded, it's called off for now. All part of that unknown/unidentified "whatever" that plagued me in February, I guess.

    Oddly enough, after one week on 5+5mg Ruxolitinib daily, my hematocrit is at a two year high - something like 36. I never saw that number during a year and a half of ECP. 45-52 is normal for men, and during ECP it ranged from a low of 27 to maybe 33 or 34. During my recent mystery illness it fell to 19. That got me some attention - both wanted and unwanted.

    So, the remaining question is: does a small dose of ruxolitinib raise the numbers while double that causes them to tank? I'm sure we'll test that possibility, or maybe we just did. In any event, one thing I am certain of: research is a lot more fun if you are standing in the doctor's shoes.

  8. #878
    Senior User
    Join Date
    Oct 2013
    Posts
    222
    Hi Po,
    Just checking in today. I see you have not posted for a bit. I hope you are doing O.K and just busy with life.
    Zorro
    Age 61
    diagnosed March 20 2013
    High Grade Non-Hodgkin Diffuse B-Cell Lymphoma w/some Burkitt like cells involved
    PET showed spots on liver and enlarged spleen w/hot spots all over Lymp areas
    Treatment started Martch 29 2013 R-ECHOP 6 rounds (1 week on 2 wks home)
    Spinal tap w/chemo for insuarnce (clean spinal fluid)
    neulasta shot after R-ECHop treatment
    June 29 PET clean
    Sepr 12 PET clean
    Nov 11 2013 melanoma removed from back all clear margins 7 inch cut
    Nov 25 confirmed MRSA infection and cleared up with bactrim
    Dec 16 still waiting for wound to close and heal (on his lat and he works out)
    wound from melanoma healed and infection gone, great war scar now
    Cat Scan Dec19th scan was clean
    Feb 20th Ct came back NED "NO ENEMY DETECTED" WHEW!!!
    May 20th 2014 NO ENEMY DETECTED!!!!!!!!! CT clean
    Aug 12 Bloodwork came back as doing what it should be doing. Cat scan in Nov.
    Oct 08 2014 tested positive for hyperthyroid. testing this week to find out more.

  9. #879
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Posts
    10,210
    Thanks for asking! Either the GvHD is morphing a bit, or I have developed some allergies. Performing my own experiment, holding one drug at a time to exclude each from causing the symptoms I am having. Blood draw and doctor appointment next week. Other than that, not much. As I recall, that is good.

  10. #880
    Senior User
    Join Date
    Oct 2013
    Posts
    222
    I think that is a good idea. Holding back on meds, food whatever and logging it in a book to compare effects. I have done this with food myself for migraines and it worked to figure out what foods I should not eat. Trust me, that was rough, because I EAT all foods

    My other half has that foot itch again at night. He has had a sore throats and is living on NyQuil so maybe related. I always hate it when he has to get up at 3am and ice pack his feet. The only thing that works. So I will try and get him off NyQuil tonight and see what happens in the next couple days. It's always something, right.

    Hoping you have success in your process. Best vibes.
    Zorro
    Age 61
    diagnosed March 20 2013
    High Grade Non-Hodgkin Diffuse B-Cell Lymphoma w/some Burkitt like cells involved
    PET showed spots on liver and enlarged spleen w/hot spots all over Lymp areas
    Treatment started Martch 29 2013 R-ECHOP 6 rounds (1 week on 2 wks home)
    Spinal tap w/chemo for insuarnce (clean spinal fluid)
    neulasta shot after R-ECHop treatment
    June 29 PET clean
    Sepr 12 PET clean
    Nov 11 2013 melanoma removed from back all clear margins 7 inch cut
    Nov 25 confirmed MRSA infection and cleared up with bactrim
    Dec 16 still waiting for wound to close and heal (on his lat and he works out)
    wound from melanoma healed and infection gone, great war scar now
    Cat Scan Dec19th scan was clean
    Feb 20th Ct came back NED "NO ENEMY DETECTED" WHEW!!!
    May 20th 2014 NO ENEMY DETECTED!!!!!!!!! CT clean
    Aug 12 Bloodwork came back as doing what it should be doing. Cat scan in Nov.
    Oct 08 2014 tested positive for hyperthyroid. testing this week to find out more.

 

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