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

  1. #11
    Hi Po18guy,

    I'm very kind? Just telling the truth! Sorry if I've asked this earlier, but what type of writing did you do for 31 years? You also were in the ministry, I think?

    I sure hope they can come up with a way to avoid that CRS. I did read they know how to attack it better and faster now?

    When I get back to Seattle, we will have to see about meeting! Not that I am wanting to be there so badly, but.....if it helps extend my life, I'm willing to do what I have to do to make it happen.

    Am wondering if they can use my frozen blood or will want to take more from me or get a donor's? Hmmm?

    Are you looking into going to MD Anderson? I hear that is another excellent place to go for treatment.

    I made a little headway regarding getting my insurance to cover treatment today. I had approval to see Dr. Holmberg (sounds familiar to me..I may have seen her when I was there?), but in the meantime, my oncologist here asked for a referral to see Dr. Mahoney, also at SCCA. They denied that, telling me I needed to see an in network provider in Tacoma. Strange, they asked me if I was moving there?!! Last Friday, they told me it wasn't necessary to go there if I wasn't moving there. Hmmm? Today, I found out Dr. Mahoney's referral was denied because they didn't have my medical history/records? They approved the transplant, they should have known? But the lady I talked to said they didn't have that information and told me to go ahead and make a consult appointment with Holmberg in the meantime. I let my oncologist here in town know about this and he messaged me to "continue working with your insurance to gain access to Car T Therapy since that's the most appropriately FDA-approved standard of care treatment for my condition."

    Isn't that what I've been working on?!! I asked him to call the lady I talked to to see if I understood her correctly. Guess I'll call her again tomorrow, too. Why do they have to make this so difficult? It sounds like a case of mis-communication, perhaps?

    You have very good ears, being able to hear a cough or sneeze several blocks away!

    Take Care and thanks again for responding. Do you think I'll hear from others who have relapsed after a transplant? Or have they all been luckier than me and are still in remission?

    Have a good evening,

    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!

  2. #12
    Super Moderator Top User po18guy's Avatar
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    Debbie,

    I wrote incident reports as an emergency first responder. A lot of incident reports. Not a minister of any sort, but I am a believer and do have the ability (gift?) of encouragement, which makes me a good fit in the cancer world.

    As to transplants, autos often fail in the case of T-Cell Lymphomas. They seem rarely to fail in B-Cell cases. In your case, there must have been some residual disease which could not be eradicated. An allogeneic transplant would probably take care of that (Graft-versus-lymphoma-effect), but remains somewhat of a gamble as to graft-versus-host-disease. Some have virtually none, while others have serious problems and a few do not survive.

    As to insurance, whether government or private, you have to be the squeaky wheel. Daily. And, some folks are searching for the slightest reason to deny whatever you are asking for. Once you learn the requirements, and make certain they are all met, they have a much harder time rejecting referrals and claims.

    I live about 40 miles/1 hour drive from SCCA, and go there once or twice per month. I will be there the next four Mondays in a row for blood draws, in accordance with the new drug I just started.

    I certainly hope that you get the communication and documentation issue worked out so that a positive plan can be quickly arrived at.

    Jim

  3. #13
    I lot of incident reports at an emergency first responder! I bet you have a lot of stories to tell & have seen so much! I am glad you are a fellow believer and know how to encourage others!

    Back to your writing and gift of words, you ought to consider getting a book written!

    I wonder why autos fail in t cell lymphomas? And I can't keep asking why did mine come back?!!! It was stage 1, limited disease the first time. Limited the second time, then with all that Beam chemo, you'd think it would have killed it all?!! Oh, my! But it decided to come back again! But I try to "chin up!"....keep positive, and like you, try to encourage others. We have a great cancer support group I go to every other week. We're like an extended family now.

    Yes, I was on the phone a long time several times with insurance and with people about my next consult and treatment this afternoon. I thought I had called to get a consult appointment with Dr. Holmberg and was transferred 3 times, then transferred back to the same person who answered the first time. Then, wouldn't you know it? She put me on hold to ask the person I talked to last why he transferred me back to her and we got disconnected! Couldn't believe it! Now, I will get a phone call from Holmberg's office. I was told she and Maloney work together and she will more than likely refer me to him. Why insurance and doctor's offices can make things confusing/complicated, I'll never know. At the end, I found out they thought I was asking for my one-year post-transplant follow-up. I never mentioned that, so I have no idea where they got that impression?

    So you are at SCCA often yet? At least you aren't too far away; that makes it easier.

    I hope to meet up with you there some time time.

    Thanks again for writing and take care!

    God Bless You!

    ---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!

  4. #14
    Deb:

    Just to chime in here for the record, I am also a T-cell guy who relapsed after an auto SCT. I was 2 1/2 yrs out from my auto when I relapsed. No symptoms....just one bright spot on my Pet scan. I did Brentuximab for my ALCL to get me in remission the first time, and after my relapse, I did it again. I am just short of 3 yrs post-allo SCT now, and feeling pretty Ok so far. I'm just shy of 67 yrs old. Good luck with your next step, whatever it is. and keep posting. We are a pretty supportive group here!

    Best regards

    David
    67 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.
    3 yr. post SCT check up: all fine, no issues.

  5. #15
    Super Moderator Top User po18guy's Avatar
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    Quote Originally Posted by Teacher Deb View Post
    I sure HATE cancer! It's so unfair!
    If life was fair, everyone would have cancer, not just us. I'm glad that life is unfair!
    Quote Originally Posted by Teacher Deb View Post
    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?
    An auto was never offered to me, as I relapsed immediately and relapsed T-Cell Lymphomas routinely defeat auto transplants. I've seen cases with as little as two months remission.

    GvHD runs the gamut from mild to wild and I am on the milder end of things. I have heard of much worse cases.
    Quote Originally Posted by Teacher Deb View Post
    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!
    Humor heals! And yes, those are the two most viable options. Tough call, but things seem to be leaning in the direction of CAR-T.
    Quote Originally Posted by Teacher Deb View Post
    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?
    Well, it is good as far as such things go. A little cancer is like being a little pregnant, huh?
    Quote Originally Posted by Teacher Deb View Post
    Is there a Car T-Cell Immunotherapy Forum, too?
    You beat me to the punch on that one! We may have to consider that, as it is yet another unique world to dwell in.

    Understandably, CAR-T was not offered me - probably a couple of reasons behind that. I would imagine first is the risk that some of the re-engineered and "revved up" T-Cells might have been lymphoma T-cells. We do not need to create a super cancer! I'm not up to speed on the thinking around using T-Cells to fight malignant T-Cells. A complicated issue, to be sure. Secondly, CAR-T was much more in its infancy three plus years ago. Transplant is a quite mature "technology" but remains substantially unpredictable as to outcome.

    The conundrum of cancer treatment is that there is no way of knowing ahead of time which treatment is best. Once a treatment is decided on, it often eliminates the others as possibilities (although that is changing). And, after you have begun treatment, there is no way of knowing if remission can be reached, the duration of remission, or if it was the best choice. As it is with life, cancer therapy is highly unpredictable.

    It feels somehow disingenuous to wish you a good week after all of this!

  6. #16

    Thanks, David

    Quote Originally Posted by David52 View Post
    Deb:

    Just to chime in here for the record, I am also a T-cell guy who relapsed after an auto SCT. I was 2 1/2 yrs out from my auto when I relapsed. No symptoms....just one bright spot on my Pet scan. I did Brentuximab for my ALCL to get me in remission the first time, and after my relapse, I did it again. I am just short of 3 yrs post-allo SCT now, and feeling pretty Ok so far. I'm just shy of 67 yrs old. Good luck with your next step, whatever it is. and keep posting. We are a pretty supportive group here!

    Best regards

    David
    Hi David,

    First time (I think?) that I've done a quote reply thing! Thanks for writing in. You had a 2 1/2 year span from your auto transplant, then relapsed. You said you were a T-Cell guy (like po). I sure hope they come up with some treatment that will cure you!

    Sorry...what is ALCL? You said it's been 3 years since your allo transplant. That is encouraging. Keep it up! It's too bad you and Po had done both transplants. Was one easier than the other?

    My first relapse was last summer, 2 mos shy of two years since being in remission, then I had the transplant this January, then 9 mos later, I had another relapse.

    You said you are almost 67 years old. I turned 59 in June.

    Do you know anything about the CAR-T-Cell Immunotherapy treatment? I told Po we needed a CAR-T Cell Immun. Board, too!

    Glad this board is available and that people are supportive of each other. I attend my hospitals cancer support group meetings. It's a great bunch of people; we're like family now.

    Take Care, have a good weekend and don't eat too much turkey (or pie!) Thursday!

    Hoping for continued good days ahead and a long, long, long remission (or better yet a cure!)!

    ---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. #17
    Hi Again, Po,

    Well, I have a consult appointment at the SCCA sixth floor on January 30th at 1:00. Will you be around? It would be nice to meet you! Let me know!

    Again, you amaze me with your writing! I sure hope they come up with something that will cure your T-Cell Lymphoma and soon! I just read your post about starting a new medication to combat the graft vs host disease. I will hope and pray that it works for you and well. You said it was relatively mild. I've heard of a lot of people having it pretty bad. And there you go again with the positives! Thankful everyone doesn't have cancer (I wouldn't even wish it on my worst enemies!) and that you know others have the host vs graft disease worse than you do. We can put things in perspective and be thankful, can't we?

    Thanks for the explanations about CAR T maybe not an option for you. My original thinking was the T cells will kill the cancer cells, so the more you have of t cells, the better it should be! Oh, my!

    I see there are two CAR T Cell Immunotherapies not in clinical trial now: Yescarta and Kymriah. It looks like Yescarta may be better and is the "older" therapy (came out in 2017, Kymriah just this May?). I wonder how they decide which one is the best treatment for you? Everyone does differently with the same cancer or treatment, even if they are at the same stage of disease. Like you said, you never know.

    I have one more radiation treatment to go---Monday. Will be glad, but then will be wondering if I'm in remission, when it'll come back and what treatment I may need. But...will try to take it one day at a time and hope/pray for the best.

    Have a great weekend and a Happy Thanksgiving, too!

    I'll be praying the new med works well for you. Take Care and talk to you later.

    ---Debbie

    P.S.
    How do I up-date my signature at the bottom?
    Last edited by Teacher Deb; 11-17-2018 at 02:18 AM. Reason: Adding a P.S.
    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. #18
    Hi Debbie!

    Couple of things. First, ALCL is anaplastic Large T-Cell Lymphoma. It is pretty rare, and pretty aggressive, but seems to respond well to treatment, especially a new drug therapy named Brentuximab Vedotin. It specifically targets my lymphoma, but not much else, so it is a pretty gentle treatment, and works really well for most of us with my kind of lymphoma. Car T Cell Immunotherapy was not an option for me when I had my allo transplant. Was still in clinical trials. And like PO, I don't know what its availability is for T-cell lymphomas. But I think it is an option for your B=cell lymphoma.

    As for what was harder...auto or allo transplant, for me, probably the auto transplant. At least the hospital part was. But by the time I had my allo transplant, I had sort of figured out the hospital routine too, so it was easier just because I made better choices. Like the first time, I spent my 24 days in patient sleeping on the damn hospital bed. Second time out, with my allo, I slept on the pull out couch. Way more comfortable. They probably would have rather I slept in the hospital bed, but as I told them, nothing good ever happened in those things, and they are totally uncomfortable. the couch was fine. They didn't hassle me about it, and probably figured I would be non-compliant anyway. LOL. But anyway, I think the conditioning chemo was easier for my allo too. And I never had constipation issues for my allo, only for my auto. And I hate that problem.


    Recovery for both was pretty easy. but I had virtually no real GvHD, unlike a lot of folks who do allos. Probably my exercise regime helped me recover faster, and it helps me still in terms of staying healthy. so I would strongly recommend you stay as physically active as you can, whatever course you take. It made a difference for me. I am almost certainly more fit today than I was 7 years ago, before all this cancer stuff started. Just getting old is all.

    Anyway, keep on keeping on, and keep us posted if you will. We are all cheering for you.

    Many hugs

    David
    67 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.
    3 yr. post SCT check up: all fine, no issues.

  9. #19
    Hello Again, David,

    Thank you for teaching me what ALCL means. There are too many acronyms! You had to get a rare cancer, huh? It looks like that brentuximab and the allo transplant did the trick for you? I will pray you stay in remission for a long time or be cured soon.

    I was surprised you said the allo was harder than the auto! I was thinking just about everyone gets that graft vs host disease and makes it so hard afterwards? I'm glad that is not the case with you.

    You said it was somewhat easier with the allo too since you had the hospital routines down. When I had my first relapse, I had a couple people tell me it must be easier the second time around since you know what to expect. I don't agree with that!

    You mentioned constipation being an issue with the auto but not the allo. I didn't have that problem at all (during my other chemo treatments, yes); I had the opposite with the auto. Yuck! OH, my!

    It helps that you are fit and staying active. Thank you for the advice to do the same. I need to get back to my walking routine for one. It's been cold and foggy lately. Brrr! But there is always the stores or even the house to walk in!

    Thank you for cheering me on!

    Have a great Thanksgiving Day!

    Hugs and prayers,

    Debbie

    P.S.
    How did you have a couch to sleep in at the hospital?!! I had a very uncomfortable lazy boy to sit in while I was in the hospital. They should provide a nice comfy place to sit, esp. when you're there for so long (24 days!).

    I finished my radiation treatments today! Yeah!
    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!

 

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