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Thread: One haploidentical transplant experience (ongoing)

  1. #651
    Administrator Top User Kermica's Avatar
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    You are simply amazing, sir, simply amazing. Good luck with this latest trial, Jim. If your sig is correct, this is number 4, I believe. What an example of perseverance and courage you provide to us.

    Good health,

    kermica

  2. #652
    Administrator Top User Didee's Avatar
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    Lurking and caring.
    Aussie, age 61
    1987 CIN 111. Cervix lasered, no further problems.

    Years of pain, bleeding, women's plumbing problems. TV ultrasound, tests, eventual hysterectomy 2007, fibroids in lining of Uterus.

    Dx Peripheral T Cell Lymphoma stage 2B bulky, aggressive Dec/09.
    6 chop14 and Neulasta.
    Clean PET April/10, 18 rads 36gy mop up. All done May 2010
    Iffy scan Nov. 2011. Scan Feb 2012 .still in remission.Still NED Nov 2012.
    Discharged Nov 2014.

    May/2012. U/sound, thyroid scan, FNB. Benign adenoma.

    Relapse Apr 2016. AITL. Some chemos then on to allo transplant. Onc says long remission was good. Still very fixable.

    SCT Aug 2016

  3. #653
    Super Moderator Top User po18guy's Avatar
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    Quote Originally Posted by Didee View Post
    Lurking and caring.
    Cyber hugs all round!

    My 2018 New Year's Resolution:

    "Itchy, not bitchy."

    Got off to a slow start on that one, but am improving. 27.5 mg Pred alternating with 5 mg seems to be a turning point of sorts. Pruritis is still fairly under control, but the rash is back. And, my blood sugar is all over the map. My pancreas is getting a little steamed after 2 1/2 years of this.

    The trial drug has a 71 to 80-something percent overall response rate, which is encouraging. And that was at 200 mg daily. I will be slammed with 400 mg daily. As to long-term effects, it will be another case of:

    "Say doc, what are the long term effects of this drug?"

    Doc (laughing) "You'll tell us!"

  4. #654
    Quote Originally Posted by po18guy View Post
    "Say doc, what are the long term effects of this drug?"

    Doc (laughing) "You'll tell us!"
    This made me laugh.
    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.

  5. #655
    Senior User Chef's Avatar
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    Quote Originally Posted by po18guy View Post
    Cyber hugs all round!

    My 2018 New Year's Resolution:

    "Itchy, not bitchy."
    Hey po, no worries there as you've been through the ringer! Sorry to hear that this is still happening, pisses me off too! I do hope you get relief and thing look up over this next course as you deserve a break, sheesh. Lotsa love man, peace!
    Dx NSHL StageIIIA
    CT {groin 6.8 x 3.3 cm} abdomen nodes, enlarged spleen 2/07/16
    Bone marrow, Colonoscopy, Gastroscopy biopsies {-}
    Lung & Heart tests Good.
    Pet scan Worrisome bone marrow 3/17/16
    ABVD 6 cycles started 3/31/16
    Interm Pet {+} 5/19/16
    Stop ABVD 9/01/16
    Pet {+} 10/04/16
    Salvage GDP 10/27/16
    Misdiagnosed from Hodgkins to {ALCL ALK-} stage 4B 12/01/16
    Adcentris 12/05/16 ~ 3/07/17
    Lumbar, Tri-fusion line, G-CSF, Collection 3/17/17 ~ 3/18/17
    Auto stopped due to infections, sent home to wait 3/27/17
    Developed 12 tumors on base of skull, patho = {ALK-} CD30 4/26/17
    Restart Adcentris 5/18/17
    MUD Allo 8/23/17
    Pet scan NED 12/01/17

    “Each morning when I awake, I experience again a supreme pleasure - that of being alive"

  6. #656
    Hi, po. I've been reading this thread as I have time. Interesting. Your cancer and transplant knowledge amuses me. I do a lot of research too in regards to cancer, treatment, and transplants, as I believe there is no such thing as too much of the (right kind of) information. Probably not as much as you, though, as you've been at it longer, plus have a T-cell lymphoma rather than the much more common DLBC like I have. Thanks for sharing your knowledge with the rest of us.

    My mom has told me over and over again, that she never heard of someone surviving cancer year after year, with pretty much continuous treatment for the last 4 years of it, until I came along. DLBC is usually highly curable within the first year or two. Mine had other ideas. While I'm not glad that any of us have such long histories with cancer, I'm glad to find you and others on this forum who have been in the trenches as long or longer than I have. I like your attitude about it all.
    5/12 Dx at age 24 with DLBC NHL Stage 2B presenting as <10 cm tumor in left lung
    5/12-9/12 R-CHOP x 6. Followup 3 month scans
    4/14 Relapse
    6/14-7/14 R-ICE x 2 inpatient
    8/21/14 BEAM and auto transplant
    10/14-11/14 Radiation and viral pneumonia
    2/15 Relapse
    3/15-9/15 GVD-R x 7
    10/15 Dx restrictive lung disease.
    1/16 Relapse
    2/16-9/16 Nivolumab x 8
    9/16 Relapse
    10/16-1/17 ESHAP x 3 inpatient
    1/17 Diagnosis changed from DLBC to PMBCL
    2/21/17 Bu-mide. Myeloablative allo transplant. Sibling donor 8/8
    3/9/17 Discharge on Day +16 to Hope Lodge
    3/27/17 Readmitted for croup, BK virus, acute ocular GVHD.
    4/17/17 Discharged to my home
    5/1/17 Readmitted. Dx pneumonia
    5/10/17 Discharged on 2 liters supplemental oxygen.
    8/17 Readmitted briefly for a flareup of pneumonia.
    9/27/17 Relapse. PET confirmed.
    11/1/17 First treatment of Brentuximab Vedotin. Total of 16 planned.
    1/25/18 50% tumor reduction!

  7. #657
    Super Moderator Top User po18guy's Avatar
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    Thank you for your kind words. Mom is from a different generation - a generation that held cancer to be a fatal illness, and sooner rather than later. In the 1970s, i distinctly remember hearing of a fellow who had "lymphatic cancer" and my friends and I just knew that he was a goner. Now, he might have survived, or he might not have - but the point is that this was the mindset back then. Now is a different age. There are cancers that people now live with, rather than die from. The primary goal is to eradicate it. If that is not possible, the point then is to sublimate it to as normal a life as possible. An increasing number are living with cancer, and expiring to something else - old age and natural causes, for example.

  8. #658
    Super Moderator Top User po18guy's Avatar
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    "Things just go from bad to worse
    It starts like a kiss and ends like a curse"

    - Jim Carroll, "Nothing is True" 1980
    Since being switched from an insulin lispro (Humalog) pen to a different brand in December, I have noted that blood sugar has been increasingly difficult to control. At times, it has spiked to twice the high range, which is not good. This is occurring while I am tapering the prednisone, and technically, it should not a be a problem. I have begun injecting twice the recommended amount in an attempt to keep up.

    Naturally, I note increased diabetic neuropathy on top of the preexisting chemotherapy induced neuropathy. My balance is deteriorating and I tend to lurch around. Called the pharmacist and learned that it was probably a contractual change from the supplier or insurance provider. Hmmm.

    DW did some Googling and found that the replacement insulin aspart (NovoLog) pen is controversial and many patients have the same complaints. So, some hades will be raised in the afternoon as I am absolutely certain this was a cost-cutting move. Am starting to pick up a little of Barry's attitude.

  9. #659
    Super Moderator Top User po18guy's Avatar
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    After ECP treatment, I ended up with an originally prescribed insulin pen. According to the pharmacist, there is 65¢ difference in retail cost between the two. The switch was made most likely because of manufacturer kickbacks to the insurance company for dispensing their product. Some sales rep got hold of DW's insurance and sold them on the idea of moving these less effective (for me) insulin pens. Since the original "graft-free" pen was not authorized, it was $180 out the door. A not-inconsiderable cost when replaced every 28 days.

    But against all reason, logic and written instructions, I had used the original pen for 11 months rather than four weeks, so I may once again amortize it in such an contra-indicated fashion. Of course, the insurance company will gladly treat any infection that I develop from using the pen longer than advised.

    Doctor is going to bat for me with the insurance company on pre-authorizing the "kickback-free" pen. Of course, the amount of the kickback they received is proprietary information, but we would gladly pay that amount if they get stinky about the whole matter.

    Conjuring up a nasty-gram for them in my mind if they look at me sideways over this rather trivial (to them) issue. And, wouldn't you know it, in possessing the threat of a better insulin, my pancreas kept my blood sugar down to 93 last evening.

  10. #660
    Administrator Top User Kermica's Avatar
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    I don't even know what to say, POGuy. I am blessed to not have these kinds of issues though, of course, one should never say never as we all know.

    I am eager to see how this resolves for you. Hopefully, the folks in the suits will fold and you will get what you need. I will send that good thought up the line and look forward to you winning this fight, as you are known to do.

    Good health,

    kermica

 

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