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Thread: Anyone Have a Recurrence After Their Stem Cell Transplant? :-(

  1. #1

    Anyone Have a Recurrence After Their Stem Cell Transplant? :-(

    Hello Everyone,

    Here is a summary of my story:

    I had Diffuse Large B Cell Lymphoma in Sept. 2015 (Stage 1). It was in my right inguinal lymph node. I had 3 R-Chop treatments 21 days apart, followed by 15 radiation treatments in Jan. 2016. I was declared to have a complete response...in remission...NED! Phew!

    Then last July (2017), 2 mos. shy of 2 years later, my Lymphoma came back! This time, it was in my left inguinal lymph nodes and there were 3 or 4 of them involved. I again had 3 R-Chop treatments (putting me into remission again), then had an auto stem cell transplant. They gave me BEAM conditioning in Dec., then my transplant in January of this year (201.

    I can't say the transplant was a piece of cake, but I did fairly well compared to other patients. I didn't have the mouth sores as severe or as long and stayed in the hospital for "only" 24 days, and I got to go home after being in Seattle (Seattle Cancer Care Alliance) for 3 months instead of 4!

    Everything was going pretty good: my labs finally became normal & I was feeling well. I had a follow-up pet scan the last week of Sept. & we were surprised & shocked to find out it had returned almost in the same spot as last summer (left inguinal area)!

    Ironically, my first dx was in Sept. 2015, then the second recurrence occurred also in Sept. of this year. Oh, did I mention that September happens to be Lymphoma Awareness Month?!!

    I am receiving radiation; a higher dose than in 2015 & also 20 instead of 15 treatments. I have 6 more to go. My oncologist wants me to have CAR T Cell Immunotherapy this time around.

    Has anyone had this?!!! What can you tell me about it? It sounds scary, but promising. I am scared...

    Please share what information you have or experiences with recurrences after a transplant you may have had.

    Thank You Very Much,

    Debbie

    P.S.
    I made a write-up of my history and treatments, etc. (sorry, can't think of what it's called) at the bottom of previous posts, but I'm not sure how I put it on here or how to up-date it?
    Stage 1 Diffuse Large B-Cell Lymphoma Sept. 2015
    Treated with: R-Chop Oct. 27, 2015, Nov. 17, 2015 & Dec. 8, 2015 &
    15 Radiation Treatments Jan. 2016
    Pet Scan Jan. 2016 demonstrated Complete Response/Remission!
    2 months shy of two years later, a routine physical found my Lymphoma had come back; my Left Inguinal Lymph Nodes were swollen in July 2017. There were three affected this time; surgeon removed the two largest ones.
    Excisional Biopsy revealed Recurrent Large B-Cell Lymphoma on July 27, 2017
    Treated again with: R-Chop Aug. 15, 2017, Sept. 5, 2017, & Oct. 2, 2017 (had to wait a week for counts to rise)
    Pet Scan Oct. 20, 2017 demonstrated I was again in Complete Remission!
    High Dose Chemotherapy with BEAM Dec. 27, 2017-Jan. 1, 2018
    Autologous Stem Cell Transplant Jan. 2 & 3, 2018
    Pet Scan March 8, 2018
    demonstrated I was still in Complete Remission!

  2. #2
    Super Moderator Top User po18guy's Avatar
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    Very sorry to hear this. I think that CAR-T may be a good bet. Sounds like it will be back to SCCA 6th floor - but you turn the other way off the elevators. By most reports, it is far easier than a transplant - which can be brutal, even fatal. This decision makes more sense if you are at fairly early stage and do not have bulky disease.

  3. #3
    Moderator Top User
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    Hi Debbie, here is a link to the macmillan site and a Canadian resident who is having CAR-T treatment in the US, she only the third I have come across, though the are several Brits lined up to have it now its been approved in the UK

    https://community.macmillan.org.uk/m...ack/activities

    The treatment and research is moving forward and second generation treatments are in the development stage as are treatments to counter some of the toxicity and side effects, though its very early days for this research, the positive though is it has started which means things should improve over coming years.

    Did your haematologist discuss the pro's and con between this treatment and an allo transplant? both come with risks but different ones and I wonder have they reviewed your biopsy and your diseases genomic make up? as that could help inform the best route route for you. If your not aware a team in New York, published some research in March/April that identified 4 new subtypes of dlbc, alongside the current 2 types of GBC and ABC.

    Its hard to offer advice as previously your only option would have been an auto transplant, and stubborn dlbc is challenging so making the right choice is critical.

    best wishes
    John
    NHL DLBC aggressive stage 4B advanced
    diagnosed april 09
    after 8 rchop and a couple of delays, in remission
    some long term side effects to manage post treatment
    some blips and investigations on the journey but now
    22nd oct 2014 discharged no more hospital visits


    we are all on a roller coaster ride, riding blind never knowing where the highs and lows are.

  4. #4
    Super Moderator Top User po18guy's Avatar
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    Not to forget that MD Anderson in Texas is conducting CAR-N/K cell therapy, which seems to avoid the cytokine release syndrome ("cytokine storm") that has been the bugaboo of CAR-T. There is a possibility that SCCA may also be associated with this trial therapy. Certainly worth inquiring about.

  5. #5
    Hi Po18guy (Jim?),

    Thanks for writing back so quickly. You've heard the Car-T Cell Immunotherapy is easier than the transplant? From what little I was able to find on it, they are both dangerous and scary?!

    I finally read through your story! You have been through so much! I am very glad that you are a survivor and are a very important contributor on this site! You have helped many people on here! You are inspirational!

    I think you said you live close to the SCCA and have had treatment there as well? So you are familiar with the place...6th floor, huh? I was on the 8th floor for my auto stem cell transplant.

    When I wrote a few months ago, I think you told me to repeat my story to encourage others. There was a new member at my cancer support group who told me "I need to give you a hug; I am so glad to hear a success story!" Sadly, her sister had a transplant for leukemia a few years ago and didn't make it. And now, here I am with my second recurrence a couple months after her comment.

    I am trying to stay positive and take it one day at a time. Sometimes it's awful hard to do. The unknowing is so hard! I do not know how much of a chance I have to make it through it again? I sure HATE cancer! It's so unfair!

    If I remember right, you had an auto transplant, then later, you had an allo (with your son's stem cells). I hope your graft vs host is improving and you're not having as many allergic reactions now? The graft vs host disease seems like it can really affect some people; I'm not sure if I could go through that?

    The decision between Car T-Cell and an allo transplant? Hmmm? I just know that before I left SCCA, they told me those would be my options IF my Lymphoma came back. I just didn't know it would come back 9 months later. Which reminds me...a sense of humor does wonders! I told my oncologist that maybe it was a mistake (are there false positive pet scans?)....since it was about 9 months after my transplant, I told him maybe it was a baby instead of cancer! I'd rather have a baby at 59, than deal with cancer again! Ha!

    My oncologist here in town feels I should get the Car T-Cell Immunotherapy. In the meantime, I am fighting with insurance to get referrals back to SCCA. Very frustrating!

    Oh, no bulky disease and I started out stage 1, localized disease. Second time around, again, it was localized, but involved 3 or 4 lymph nodes. This time, it's localized again. Size of my lump was 3.3 cm, so it was smaller than the other times, I guess that's good?

    Thanks again, Poguy. If you have any specifics regarding T-Cell therapy, please pass it on. Is there a Car T-Cell Immunotherapy Forum, too?

    Have a good weekend & I wish you all the best.

    ---Debbie
    Stage 1 Diffuse Large B-Cell Lymphoma Sept. 2015
    Treated with: R-Chop Oct. 27, 2015, Nov. 17, 2015 & Dec. 8, 2015 &
    15 Radiation Treatments Jan. 2016
    Pet Scan Jan. 2016 demonstrated Complete Response/Remission!
    2 months shy of two years later, a routine physical found my Lymphoma had come back; my Left Inguinal Lymph Nodes were swollen in July 2017. There were three affected this time; surgeon removed the two largest ones.
    Excisional Biopsy revealed Recurrent Large B-Cell Lymphoma on July 27, 2017
    Treated again with: R-Chop Aug. 15, 2017, Sept. 5, 2017, & Oct. 2, 2017 (had to wait a week for counts to rise)
    Pet Scan Oct. 20, 2017 demonstrated I was again in Complete Remission!
    High Dose Chemotherapy with BEAM Dec. 27, 2017-Jan. 1, 2018
    Autologous Stem Cell Transplant Jan. 2 & 3, 2018
    Pet Scan March 8, 2018
    demonstrated I was still in Complete Remission!

  6. #6
    Hi again,

    Yes, that part is very scary! But they do say it's temporary and they know how to counter-act it better now?

    Thanks again,

    Debbie
    Stage 1 Diffuse Large B-Cell Lymphoma Sept. 2015
    Treated with: R-Chop Oct. 27, 2015, Nov. 17, 2015 & Dec. 8, 2015 &
    15 Radiation Treatments Jan. 2016
    Pet Scan Jan. 2016 demonstrated Complete Response/Remission!
    2 months shy of two years later, a routine physical found my Lymphoma had come back; my Left Inguinal Lymph Nodes were swollen in July 2017. There were three affected this time; surgeon removed the two largest ones.
    Excisional Biopsy revealed Recurrent Large B-Cell Lymphoma on July 27, 2017
    Treated again with: R-Chop Aug. 15, 2017, Sept. 5, 2017, & Oct. 2, 2017 (had to wait a week for counts to rise)
    Pet Scan Oct. 20, 2017 demonstrated I was again in Complete Remission!
    High Dose Chemotherapy with BEAM Dec. 27, 2017-Jan. 1, 2018
    Autologous Stem Cell Transplant Jan. 2 & 3, 2018
    Pet Scan March 8, 2018
    demonstrated I was still in Complete Remission!

  7. #7
    Hi John,

    Thank you so much for writing and giving me the website to check out. I will do that after responding to your post.

    You had stage 4 NHL in '09 and are still in remission?!! Yeah! Very happy you are doing so well! They declared you cured, didn't they? That is great!

    Yes, technology has been advancing at a great pace! I am very thankful for that! When I left SCCA after my stem cell transplant, we discussed that IF it came back, we'd look into Car T-Cell Immunotherapy or an allo transplant. Then they reminded me what you said: when/if it came back, there would probably be more options for me. Well, I didn't think it would come back around 9 months later! This is scary!

    My oncologist here in town told me that I should pursue the Car T cell treatment. I'm sure at my consult visit(s), they would discuss all options I may have. At the present time, I am fighting insurance to get referrals to the correct places. It can get very frustrating!

    As you said, I could have an allo transplant. I am hesitant to do that because of the many side-effects and possibly have host-vs-graft disease for the rest of my life which could be mild to severe. But if they think that is best for my situation, of course, I'd do it.

    I sure hope I make it through it this time.

    As far as I know, my subtype is germinal. Supposed to be a better prognosis, but who knows?

    If you come up with more information I may benefit from, please don't hesitate to share.

    Wishing you the best and praying you stay in remission (cured!).

    Thanks again,

    Debbie
    Stage 1 Diffuse Large B-Cell Lymphoma Sept. 2015
    Treated with: R-Chop Oct. 27, 2015, Nov. 17, 2015 & Dec. 8, 2015 &
    15 Radiation Treatments Jan. 2016
    Pet Scan Jan. 2016 demonstrated Complete Response/Remission!
    2 months shy of two years later, a routine physical found my Lymphoma had come back; my Left Inguinal Lymph Nodes were swollen in July 2017. There were three affected this time; surgeon removed the two largest ones.
    Excisional Biopsy revealed Recurrent Large B-Cell Lymphoma on July 27, 2017
    Treated again with: R-Chop Aug. 15, 2017, Sept. 5, 2017, & Oct. 2, 2017 (had to wait a week for counts to rise)
    Pet Scan Oct. 20, 2017 demonstrated I was again in Complete Remission!
    High Dose Chemotherapy with BEAM Dec. 27, 2017-Jan. 1, 2018
    Autologous Stem Cell Transplant Jan. 2 & 3, 2018
    Pet Scan March 8, 2018
    demonstrated I was still in Complete Remission!

  8. #8
    Super Moderator Top User po18guy's Avatar
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    The ugliness of time is its ravages upon us. Conversely, the beauty of time is the ever-expanding array of options which we have. When I was first treated in 2008, there was no defined therapy - there is still none. Despite the failure of those first eight drugs, the litany of new drugs and regimens that I subsequently received have allowed me to arrive at this point in time. Did I need each and every one of them (and more) to make it? Well, yes, but then completing the journey is more important than what occurs along the journey - providing one ultimately survives the journey.

    You most certainly have more than two options, and the number increases steadily. When the two alternatives to life-long steroids were withdrawn due to lack of effectiveness, I could have lapsed into maudlin over the situation. But, guess what? Three new options appeared.

    So, chin up!

  9. #9
    Po,

    I think I asked you why the t-cell immunotherapy won't work for your t cell lymphoma? As you said, with time, there are more and more therapies coming.

    You have a great attitude and a way with words! Have you written or had anything published? If not, you should!

    And yes, chin up! There is always someone else worse off than I. I hate it when I see these young people complain how "awful" their day was on FB! They don't realize how good they have it compared to others!

    Thanks for contributing to this board and keep going strong!

    ---Debbie
    Stage 1 Diffuse Large B-Cell Lymphoma Sept. 2015
    Treated with: R-Chop Oct. 27, 2015, Nov. 17, 2015 & Dec. 8, 2015 &
    15 Radiation Treatments Jan. 2016
    Pet Scan Jan. 2016 demonstrated Complete Response/Remission!
    2 months shy of two years later, a routine physical found my Lymphoma had come back; my Left Inguinal Lymph Nodes were swollen in July 2017. There were three affected this time; surgeon removed the two largest ones.
    Excisional Biopsy revealed Recurrent Large B-Cell Lymphoma on July 27, 2017
    Treated again with: R-Chop Aug. 15, 2017, Sept. 5, 2017, & Oct. 2, 2017 (had to wait a week for counts to rise)
    Pet Scan Oct. 20, 2017 demonstrated I was again in Complete Remission!
    High Dose Chemotherapy with BEAM Dec. 27, 2017-Jan. 1, 2018
    Autologous Stem Cell Transplant Jan. 2 & 3, 2018
    Pet Scan March 8, 2018
    demonstrated I was still in Complete Remission!

  10. #10
    Super Moderator Top User po18guy's Avatar
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    You are very kind. Thank you. Well, I may have a way with words, or I may have had a lot of experience compressed into the past 10 years! I wrote for 31 years in my prior life, so I better have developed some ability or I was simply not paying attention!

    As to CAR-T therapy for T-Cell malignancies, there was some debate about how T-cells were supposed to selectively kill other T-cells. I am hearing that some progress has been made in that regard, and MD Anderson in Texas is trying CAR-N/K ("Natural Killer") therapy, as it seems to avoid the cytokine storm (CRS) that plagues some of the CAR-T therapy.

    As mentioned, time is a doubled edged sword that works both for us and against us. I may see you on the 6th floor, as I often wait in the Immunotherapy waiting area - it is newer, cleaner and less coughed and sneezed in than the transplant waiting area. After being on immune suppression for three years+, I can hear a cough or sneeze several blocks away!

 

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