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

  1. #51
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    Good luck! Sending good vibes and virtual Zoka french roast.

  2. #52
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    Thanks! I will need to get the coffee blooming extra early on the stem cell harvesting days. Only news today was "for some reason T-Cell patients stem cell yields tend to be low, expect to be donating the entire week". So, until I make quota it is two shots a day of Zarxio and one of Plerixafor. I am prepared to be extremely envious of Kermica being essentially one and done on three shots of Granix. Tuesday we will get the first read on just how miserly my systems are.

  3. #53
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    Not one and done, but a good day for collecting stem cells. Reported 5.4m of the targeted 7.0m collected! Hope is to finish up tomorrow and then have until the Monday the 23rd to rest up for the transplant process. It was annoying to do four days of two shots a day of Zarxio before any collection, but a good first day makes it seem worth while. Fortunately my wife proved adept with a syringe, but we are both happy to be putting that phase behind us. The Plerixafor produced slight headache, head allergy, fatigue, and slight nausea symptoms, but were tolerable. Another visit with Infectious Disease. Starting the maintenance dose of Bactrim tomorrow to keep the PJP pneumonia in check. Also starting another round of Doxycycline to try and clean up inflammation around the lung surgery drainage site which seems to be acting up again.

  4. #54
    Super Moderator Top User po18guy's Avatar
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    I say celebrate the small problems, as they are not big problems!

  5. #55
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    So true! But a saying I learned growing up in the bush country of equatorial Africa also comes to mind, "little lions become big lions and big lions kill". So I like to keep an eye on everything.

    The Bactrim dosage to keep PJP down is 3 tablets a day. For the cost of three tablets a week of Bactrim throughout this process I could have avoided an ER visit, 4 days in the Hospital, 9 tablets of Bactrim a day for three weeks, thoracic surgery with a recovery stay, two rounds of Doxycycline to treat infection, two months of transplant delay, three X-rays, one CT Scan w/ Contrast, a gross of lab tests, and the loss of one lung lobe. Besides raising the question to my doctors, just wondering how the process gets updated so that fewer future patients have this tradeoff.

  6. #56
    Super Moderator Top User po18guy's Avatar
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    Prudence is very good, but remember that you can subject yourself to a lifetime of needless, invasive and painful testing chasing the odd symptom here or there.

    Just saying.

  7. #57
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    True. But that would be out of character for me. My doctors are encouraging me to get symptoms checked out earlier, before showing up in the ER approaching my deathbed!

    Perhaps I left the false impression that I was advocating more testing for dormant PJP. I was not, because there is none, short of an invasive lung biopsy. Which, I agree, would be unwise. I understand an autopsy study has shown that up to 65% of people have this infection. This is why so many exit or follow transplant with PJP issues. My inhalation therapist spoke fondly of her many "transplant" patients.

    My understanding is that PJP was one of the largest killers of AIDS patients and that it is now standard practice to put anyone with a low CD4 count on a suppression level of Bactrim. The question is, since heavy steroids and chemo treatment targeting the immune system create temporary "AIDS like" patients, why would this not be advisable for us? Lord knows we are already having plenty of blood tests.

    Bactrim costs roughly $0.50 per dose. If I had been given the choice of avoiding all PJP related issues for $1.50 per week it is something I would do.

    My hope in recording this odyssey is that future patients, who might come this way, may find encouragement to persist, and are forewarned of potential issues which should at least be raised in discussion with their doctors. Perhaps some enterprising researcher will use the combined comments of this forum and improve treatment protocols for all of us. My suggestion for anyone who follows would be to do what you can to avoid the PJP island. There be dragons.
    Last edited by jwessel; Yesterday at 08:40 PM.

 

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