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Thread: CHOP Experience, to an auto SCT for AITL / PTCL

  1. #91
    Experienced User
    Join Date
    Apr 2019
    Posts
    62
    debpower, thanks for your kind words and thoughts. I was not familiar with the Poisonwood Bible. I took some time to read several reviews and comments. Our experience would have been different in some ways. We were in a strict Islamic country and only there to start a school and clinic in the interior. No discussion of religion allowed. Generally the local population was a structured, polite, tribal society who practiced a more enlightened minority Sufi Islam. This did not stop the occasional radical from waking up and taking an oath to further his religious faith by killing an "infidel" on that day.

    Our experience was similar in that children died. Infant mortality was not limited to the local population. Several times I was not expected to survive, but pulled through. I have always had the premonition that what I had as a child would come back for me later. Perhaps that is the source of my aberrant T Cells.

    African snakes are generally more aggressive and territorial. Some of them come after you if you invade what they consider their territory and one of you is going to die. Always good to be carrying a stick.

    As of yesterday two weeks has passed since I was discharged. I can now swallow with no discomfort. Gastro issues have resolved. Digestion is still fragile and I have to be careful regarding diet. Absolutely no hair or trace of stubble. The last several days energy level has improved - no more morning naps! We have built back up to a two mile walk when the weather cooperates. WBC has drifted down to normal now that it is no longer being artificially boosted. Hopefully it will stop drifting down. Platelets are now normal. RBC and Hemoglobin are around 75% so oxygen absorption and transport are weak. Hopefully next weeks blood tests will show further improvement because energy levels have improved recently.

  2. #92
    Senior User
    Join Date
    Jan 2015
    Posts
    274
    Yes, I hope so too! I'm glad you had the time to look into the Poisonwood Bible. It was such an interesting story. It was one of those books that I just couldn't get into at first, and then once I did, and finished it, was one of my all time favorite books. Your experience was much different as you note. What an interesting childhood you had! And to survive so much! Keep moving forward - your hair will return, as well as increased strength. I'm impressed that you are already walking 2 miles on good weather days. And on that note, I think I will try and do that and take my dog for a walk now!

  3. #93
    Experienced User
    Join Date
    Apr 2019
    Posts
    62
    Had my one month post transplant follow up appointments. Transplant process is now considered complete. Blood counts continue to nudge up towards the low end of normal with white counts solidly in the normal range. We are planning to travel to spend Thanksgiving with our two sons. Caution at this point is to just use good judgement, wash hands often, and try to stay away from toddlers. I was given a flu shot and had no reaction. Biggest concern is not the flu or common cold but some of the viruses toddlers are passing around as they build their immune systems.

    Next check point is the 100 day CT scan and then getting my childhood immunizations again in May. It seems for everything except measles, somehow the measles resistance made it through.

  4. #94
    Experienced User
    Join Date
    Nov 2017
    Posts
    78
    yay...good news! spending time with family helps getting life back to normal.

    And yes toddlers...adorable they are...but full of unwanted bugs , nevertheless hard to stay away from the ones we love...so make them wash hands every 5 minutes
    Nov/17 : Wife 36y diagnosed DLBC NHL in the Breast ( Stage 1AE )
    Nov/17 : Started 6 x RCHOP 21 ( finished Mar 2018 )
    Apr/18 : PET/CT early April confirmed in Complete Metabolic Response
    On to 15x Radiation ( total of 30Gys )
    May/18: Rads done
    Ago/18: 3x HDMTx completed!
    Dev/18: PET-CT Done. All good
    Apr/19: Follow up. All good.
    Oct/19: Follow up. All good.
    ... on to follopw ups...

 

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