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My4butterflys
My4butterflys Member Posts: 8 Member
edited August 2022 in Lymphoma (Hodgkin and Non-Hodgkin) #1

Hi everyone!

I am a newbie to the group.I was diagnosed Oct 2021 with AITL (Angioimmunoblastic T-Cell Lymphoma) did 6 rounds of chemo and been in remission since Feb 2022. Looking forward to sharing and learning from others :)

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  • po18guy
    po18guy Member Posts: 1,467 Member
    edited August 2022 #2
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    Welcome! An excellent outcome! Which regimen did you receive?

  • My4butterflys
    My4butterflys Member Posts: 8 Member
    #3
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    Thank you!

    I had Doxorubicin ,Brentuximab,Cyclophosphamide

  • po18guy
    po18guy Member Posts: 1,467 Member
    #4
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    Very good that it was so effective! That's a new combo apparently - but many T-Cell Lymphomas do express CD30, so they are the direct target of Adcetris (Brentuximab Vedotin). If I might ask, where were you treated?

  • My4butterflys
    My4butterflys Member Posts: 8 Member
    #5
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    I was treated at Sparrow Herbert-Herman Center Lansing,Michigan

  • po18guy
    po18guy Member Posts: 1,467 Member
    #6
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    Well, they did a great job. Was that your first and only regimen?

  • My4butterflys
    My4butterflys Member Posts: 8 Member
    #7
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    Thanks..fingers🤞

    Yes this was my first and only....I also have Lupus so things where alittle crazy for awhile at getting the correct diagnosed..so I had to get UofM ( who I see for my Lupus) involved with this whole process(Sparrow had no idea what they where doing).. and are the ones who told Sparrow what to give me..if that makes any sense..lol

  • po18guy
    po18guy Member Posts: 1,467 Member
    #8
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    I wonder if the immune suppression due to the chemotherapy might have lessened the symptoms of Lupus? There are precious few cancer centers who have T-Cell specialists. If the UofM has one, I would travel there - it is worth the time and trouble. Had I not gone to such a first class facility, I would have been gone in 2008. I did not want the 80 mile round trip - which I have now made hundreds of times.

  • My4butterflys
    My4butterflys Member Posts: 8 Member
    #9
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    https://csn.cancer.org/discussion/comment/1699671#Comment_1699671

    Yes.. it did make my Lupus symptoms nonexistent..my Dr at UofM specializes in AITL,my family Dr found her for me.If you want her info let me

  • po18guy
    po18guy Member Posts: 1,467 Member
    #10
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    Am guessing Dr. Carty? It is good to know that there are more and more hematologists specializing in T-Cell malignancies, as there are precious few. Honestly, my hematologist believes that I am through with lymphoma after my transplant. I had PTCL-NOS three times and AITL once. I try to keep up on advances, but it is a good thing that they are making to much progress.

  • My4butterflys
    My4butterflys Member Posts: 8 Member
    #11
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    https://csn.cancer.org/discussion/comment/1699682#Comment_1699682

    Yes she is great ..Like you I try to keep up on advances

  • po18guy
    po18guy Member Posts: 1,467 Member
    #12
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    Even though T-Cell Lymphomas are roughly 10% of lymphomas, there are 26 known sub-types, with additional sub-types being identified on a fairly regular basis. There is one subtype (ALCL ALK+) which has a "good" prognosis, while the rest are generally "poor" or worse. You and I are helping to improve that.

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,812 Member
    #13
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    My,

    I am responding to your loss-of-taste (dysgeusia) inquiry. Dysgeusia is fairly common from an assortment of differing chemo drugs. It can vary significantly, from so-called 'metal-mouth,' to various odd taste sensations, to no sense of taste at all. Mine began about two months into R-ABVD, and lasted close to a year, or about eight months following cessation of treatment. Mine I called 'salt mouth,' since I had a sensation of a half cup of raw salt being in my mouth all the time. I also later developed chemically-induced anorexia, which might or might not have been related. Certainly both affect the pleasure of taking foods.

    I am not aware of a treatment for this, but some patients recommend the treatments employed against mouth sores. I don't see how it could possibly hurt the situation. I have read very few testimonials here about permanent loss of taste, so I don't think you are dealing with a long-term issue. Worth noting that many people who went through serious bouts with covid also report long-term loss of both taste and smell. Some of the data regarding that might assist chemo patients as well

    max

  • My4butterflys
    My4butterflys Member Posts: 8 Member
    #14
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    https://csn.cancer.org/discussion/comment/1699731#Comment_1699731

    Thank you Max for your response. I had Covid while on Chemo in Jan 22 so I was not sure if the loss of taste and smell is from one or the other or both.I figured it would somewhere about a year but was not sure.


    Jodi

  • PBL
    PBL Member Posts: 366 Member
    #15
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    Hi Jodi,

    Perhaps your doctor would be willing to add a line to your next list of blood tests to check for your zinc level. Zinc deficiency is apparently a well-documented factor in hypogeusia or ageusia, and may be attributable to CoViD or result from the chemotherapy you have received for your lymphoma.

    It is worth mentioning to your doctor and waiting for test results before supplementing on your own.

    I hope this helps.

    PBL

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