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Thread: Sharing T-Cell Lymphoma Journey

  1. #11
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    Thanks po18guy for the detailed response. You continue to be a beacon of hope with a cornucopia of advice for the community. I just keep reading your posts across various forums to gain overall knowledge.

    While it does not change any of my situation, but with more information I think one is able to cope with the situation somewhat better.


    Its still a long road ahead for me. Started off on the pathway inhibitor today (Cerdulatinib). Fingers crossed. The drug works against Syk/JAK pathways simultaneously. Lets see how it goes from here. Will be going through these for the next two cycles (two months) before they plan on doing a PET/CT and prepare for Allo.


    Just noticed today that the drug I am taking is now going to get FDA orphan drug status (I guess that is an approval), so might be helpful for others on this forum soon.

    http://investors.portola.com/phoenix...cle&ID=2368929

    Until then fingers crossed , stay positive, and keep myself active and strong.

  2. #12
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    I am sorry that you have relapsed, but unfortunately it doesn't surprise me since my brother also relapsed very quickly. As I mentioned before in April, he then became a patient of Dr. Horwitz for AITL (age 57). I know he entered a trial to get ready for transplant (to go into remission) and it worked. I don't know what the drug was in that trial. But he did go into remission and had an allo transplant two and and 1/2 years ago. His donor was an unrelated 29 year old man - 10 out of 10 match. His experience with GvHD has been up and down. Mostly mild. Some mouth,skin and eye involvement until recently when the GvHD attacked his liver very unexpectedly after two years. One of his transplant doctors actually feels that the GvHD was reactivated in his body from a virus he had had a few months before (probably caught it from my husband!). His treatment has been steroids, which are now tapered way down and all of his tests show normal levels. Yay!! He recently returned from a trip from the Scottish Highlands and also a boat trip (and having to operate and work the canal locks) around France! So as you can see, he is doing well enough to live his life. He is still working and doing well, though fatigued sometimes. As Po said, another one of our fellow bloggers, David, is doing even better. You are in the best of hands. Dr. Horwitz originally wanted my brother to put off transplant a few more years, but also told him the truth when it was time to stop waiting and "go for it". I feel that timing is everything. And like Po said, the science is so rapidly changing and there are so many more options being unveiled all the time. Best of luck with the next step of your journey.

  3. #13
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    Quote Originally Posted by debpower View Post
    ! He recently returned from a trip from the Scottish Highlands and also a boat trip (and having to operate and work the canal locks) around France! So as you can see, he is doing well enough to live his life. He is still working and doing well, though fatigued sometimes.
    Thanks for your support debpower. When I hear stories like those and others I read on the forum, it does help bring a new sense of hope. While I try not to think of my situation much, as I have learnt to tell myself that I cannot do anything about it, but when I hear stories of people living through these diseases and maintain their lifestyles it helps build the confidence and positivity in oneself.

    Can only do what is in my control - Stay Positive, Stay strong, Stay active, Take every day as a new blessing, Stay happy....all else has to be left to destiny and fate.

    regards
    1/12/18 - PET/CT - several nodes in neck, groin and abdomen. Stage IV, Bone marrow negative
    1/15/18 - Dx PTCL-NOS
    2/1/18 - Confirmed Dx as AITL
    2/5/18 - Started CHOEP-14 x 6 cycles
    4/2/18 - Interim Pet/CT after 4th Cycle. All Clean, NED
    Preparation for Auto-SCT
    5/16/18 - Stem Cell Collection
    5/31/18 - Admitted for Auto-SCT, Five days of Chemo (BEAM)
    6/5/18 - SCT
    6/13/18 - Grafting occurs
    6/18/18 - Discharged from Hospital
    9/12/18 - PET/CT, Found small nodes in abdomen with Activity
    9/20/18 - Biopsy performed, Confirmed Relapse of AITL
    10/8/18 - Started Daily dose of Cerdulatinib (Syk/JAK Kinase Inhibitors)

  4. #14
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    It seems like you have learned so much already - what a great attitude and outlook. I once was doing a debriefing ( I worked as an oncology chaplain) with a psychiatrist to help nurses and doctors that were experiencing some issues on their floors - and the psychiatrist made such a simple but powerful observation... only worry about the things that are in your control - don't waste time on things that are not. And it seems that is what you are doing - bravo!
    Deb

  5. #15
    [QUOTE=ptclguy;372675 Can only do what is in my control - Stay Positive, Stay strong, Stay active, Take every day as a new blessing, Stay happy....all else has to be left to destiny and fate. regards[/QUOTE]

    That is absolutely a perfect distillation of the very best we can do in terms of living our lives while afflicted with this gunk. Well said. Keep it up!
    66 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.
    2 yr. post SCT check up: all fine, no issues.

  6. #16
    Super Moderator Top User po18guy's Avatar
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    Quote Originally Posted by debpower View Post
    It seems like you have learned so much already - what a great attitude and outlook. I once was doing a debriefing ( I worked as an oncology chaplain) with a psychiatrist to help nurses and doctors that were experiencing some issues on their floors - and the psychiatrist made such a simple but powerful observation... only worry about the things that are in your control - don't waste time on things that are not. And it seems that is what you are doing - bravo!
    Deb
    Whether one is a believer or not, the serenity prayer is sage advice.

  7. #17
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    Hi there ptclguy. Reading your post after searching for Cerdulatinib. I have AITL. CHOP in 2015 put me in remission for two years. Relapse took me to Brentuximab which seemed to work but I have now developed skin lesions (biopsied) which are AITL and have some lung nodules and one in groin. Just had PET 12/3 so this is current status. Doc called today and they would like to put me in clinical trial for cerdulatinib. How has your experience been? Side effects? The research group told me worst side effect is digestive issues. However a person in my AITL Facebook group ended up on a ventilator after a couple dose of cerdulatinib. He has recovered but it didnít work for him and he had pretty adverse reaction. I donít have any other personal reference from anybody. Just wondering your experience with it.
    Last edited by Glass0195; 12-05-2018 at 09:33 PM. Reason: Didnít address

 

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