Peripheral T Cell - NOS - pctl

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  • briankut
    briankut Member Posts: 22 Member
    #22
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    Well, all clear for autologous stem cell transplant ! I will be admitted on March 1

  • po18guy
    po18guy Member Posts: 1,466 Member
    #23
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    That is great! You may already know all of the following but for those in a similar situation: As to transplants, Auto-transplants are harder going into but easier coming out of. First, the easy is the 'guarantee' of cell engraftment in the marrow - being that they are the same cells that were taken from your marrow. Allogeneic patients have no such assurance. The more difficult aspect is the myeloablation (marrow destruction) which eliminates all potential abnormal or cancerous cells in your marrow in preparation for the transplant. A plowing of the field, so to speak, before the seeds (hematopoietic stem cells) are planted.

    To prepare your marrow for transplantation (and to hopefully eliminate all cancerous cells that you have), the chemotherapy administered may be as high as 10X-15X normal dosing. The thinking is that no cancer cells could survive such a saturation of treatment. However, this high-dose chemotherapy is given only for a very short duration and will not cause the cumulative side effects of standard chemotherapy. Think of it passing your hand over a candle, versus holding it over the candle. After engraftment of your own cells, recovery will generally go reasonably quickly. There is no Graft-versus-Host-Disease (GvHD) associated with auto transplants, as you are receiving your own DNA and not someone else's. This is the best chance for a long-term remission and is the state of the at in T-Cell Lymphoma treatment.

    This is the normative transplant preparation. T-Cell Lymphomas and their therapy is a rapidly changing world, so this may not be exactly what you will receive. Doctor should be willing to explain all of this in understandable language.

  • michaelhbrown66
    michaelhbrown66 Member Posts: 2 Member
    #24
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    I don't have any great advice about treatment, aside from telling you I feel the same way. Was originally misdiagnosed as peritoneal and given 12 months. Biopsies showed Diffuse Large B-Cell Lymphoma, and I went directly into R-CHOP, finished round 6 yesterday, CT Scan showed full remission after two rounds, I'm 55 and six months ago thought I had a bum knee, pulled back muscle, and maybe an ulcer, no idea it was cancer. Now every ache and pain makes me think it's recurring, I have twins I want to walk down the aisle one day. It's scary, but I guess we wake up each morning and give thanks and keep moving forward? PET scan mid March, will give me a better picture. I'm not afraid of dying, I'm not wanting to leave the ones that love me just yet. Stay strong, good luck with your next treatment!

  • briankut
    briankut Member Posts: 22 Member
    #25
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    https://csn.cancer.org/discussion/comment/1693831#Comment_1693831

    Hey !! I am day +6 and doing fantastic (day 13 of hospitalization) ! This is all a head game, i am staying positive and walking 5 miles a day after my auto-sct. Thanks for all the kindness !

  • briankut
    briankut Member Posts: 22 Member
    #26
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    I am doing so well, my nurse referred to me as an outlier today 😀

  • po18guy
    po18guy Member Posts: 1,466 Member
    #27
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    Excellent! thank you for the update!

  • briankut
    briankut Member Posts: 22 Member
    #28
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    Excellent day !! I am home from my autologous stem cell transplant ! Today was day +12 (18 nights total in hospital) I feel great ! The nurses accused me of being an outlier as i never had diarrhea , nausea , or mouth sores. I received BEAM chemo - which is very intense….i am soooo glad to be home with my wife and 2 kids and i hope and pray that this is the end of my cancer ! 

    -Brian

  • po18guy
    po18guy Member Posts: 1,466 Member
    #29
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    Thanks once again for checking back in. Nothing but good news! You are well on your way and,although life is forever changed, it sounds like you are doing exceptionally well. All the best to you as you continue to recover.

  • briankut
    briankut Member Posts: 22 Member
    #30
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    Have to admit, kinda worried - oncologist saw me last week - felt arnd my neck - i asked do you feel anything ? ‘No’

    tonite i get a message, automated of course, you are scheduled for a CT scan on april 8. Wtf ??? 3 weeks post transplant ? This has me worried

    -Brian

  • po18guy
    po18guy Member Posts: 1,466 Member
    #31
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    Bear in mind that your immune system is stumbling around and does not yet know how to walk. As well, pathogens abound. I have had quite a few obvious nodes over the past 1-2 years and it was nothing - they were simply doing their job.

  • briankut
    briankut Member Posts: 22 Member
    #32
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    https://csn.cancer.org/discussion/comment/1695555#Comment_1695555

    Thats probably the case - plus i dont think she would have lied to me when I asked ‘do you feel any areas of concern’ - her answer was ‘no’ - i think i have some internal scar tissue tbag is near jugular where cvc was put in and she may be checking that.

  • po18guy
    po18guy Member Posts: 1,466 Member
    #33
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    Well, I have had two relapses plus two additional cancers, I'm much older and I am still here. So take comfort where it may be found.

  • briankut
    briankut Member Posts: 22 Member
    #34
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    OMG thanks for the stress, jacklegs !!

    514E99B5-EA29-4E79-8CBA-EB567563708A.png


  • po18guy
    po18guy Member Posts: 1,466 Member
    edited April 2022 #35
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    Completely normal. Focus on surviving! Forget the floor. Look ahead and look up! A scan too early would only subject you to even more ionizing radiation. My advice is to live life and enjoy. The alternative: Anxiety, which does nothing to add to your life.

  • briankut
    briankut Member Posts: 22 Member
    #36
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    https://csn.cancer.org/discussion/comment/1695574#Comment_1695574

    Thanks - its hard, but i get that !

  • briankut
    briankut Member Posts: 22 Member
    #37
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    Doing great, +61 days out from my auto - last week at my monday appt, my wbc was 9.3, my anc 4.9, and my platelets 350k - recovery for me has been easy - i actually hit the ground running the day i was released- i know its NOTHING like an allo , allos so much more difficult, but still , recovery did not take me 3-5 months like most ppl for autos. Just enjoying life !!

    -Brian

  • po18guy
    po18guy Member Posts: 1,466 Member
    #38
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    Excellent. Great to hear that all is going so well!

  • briankut
    briankut Member Posts: 22 Member
    #39
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    Hit day +130 and my PET was clear ! Doin great

    -Brian

  • po18guy
    po18guy Member Posts: 1,466 Member
    #40
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    Great news. Glad to hear it. And thank you for checking in.

  • briankut
    briankut Member Posts: 22 Member
    #41
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    I just had a clear CT 13 mos post auto transplant - this is a very good sign as there is a steep relapse rate (about 30% in the one year post auto) - years 1-5 its more like 20% relapse rate spread over those 4 years…so i really made it over a big hump with this news!

    -Brian

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