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Thread: Caregiver and mom to 24-year old son diagnosed July 2016 with S-ALCL ALK-negtive

  1. #21
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    Hi Po, Would love to know more about what you meant in your post abut auto transplant in upfront setting. It IS unnerving to read all the stories of ALCL folks here - many who relapsed after ASCT and had to go on to Allo. So how is it that ASCT is worth it? Are you saying if you relapse after chemo then there is no point in having an auto at that time?
    Researcher, advocate, and caregiver to my son, age 24 at diagnosis
    July 2016 Diagnosis ALCL ALK-neg
    Sept 2016 E-CHOP x3; PET scan CR
    Nov 2016 Sixth and final round of E-CHOP completed - Continued to live alone and work two jobs through chemo!
    Dec 2016 PET scan CR
    March 2017 Experiencing symptoms; CT-PET scan shows relapse.
    April 2017 CD-30 confirmed w/ biopsy; Begin Brentuximab to reach CR for Auto transplant
    May 2017 Biopsy came back as Classical Hodgkin's - misdiagnosed initially
    June 2017 Only partial remission with Brent so on to ICE x 2 (worst yet)
    August 2017 Good response, but still PR, moving forward with ASCT. Outpatient at CBCI in Denver.
    October 2017 Clear scan after auto. Begin Brent for maintenance X3
    January 2018 PET-CT shows relapse. Begin Keytruda in Feb
    May 2018 CR after just one dose of Keytruda.
    Scan in August, 2018. ALL CLEAR

  2. #22
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    Just saw your reply here! Yes, that's exactly what we talked about. If there is a relapse he would recommend Brentuximab and then likely ASCT (possibly Allo). He assured me that ASCT in second remission would be as beneficial as in first remission, which was a surprise to me. I knew about the Phase 3 study of Brentiximab in frontline because I looked up clinical studies as soon as he was diagnosed and that one came up. Good to know results will be in this year!

    How are you doing with the GVHD? I hope things are much better for you now.

    Quote Originally Posted by Alison60 View Post
    I think that it is *really* smart to talk to a T-CELL Lymphoma specialist like Dr. Shustov. I haved talked to him twice at two of the T-CELL Lymphoma conferences in Hawaii in 2015 and 2016. It is totally worth it to get a second opinion from him. If you are going to do a SCT you want to make sure that you do the right kind. ALLO is more risky because of GVHD, but it is more likely to give a long term cure. OR he may even say that you should watch and wait, and then get Brentuximab if it comes back. I do know that once I had mutated into chemo resistant form then even the chemo in the SCT didn't touch the lymphoma. But the Brentuximab did. I asked as he was leaving the 2016 conference, when are they going to make Brentuximab the first line treatment and he said it's coming in Q1, 2017, and also, that they may change the whole way they treat us because of Brentuximab... so talking to someone on the front lines, doing the research and knows exactly how to treat our specific kind of ALCL ALK- lymphoma could make a difference. If he agrees with your treatment plan then you have big reassurance that you are doing the right thing. If he wants to change it then it is even more worth it. Your son is really lucky that he has you to help him figure this out. Stay positive - he's going to be okay.
    Researcher, advocate, and caregiver to my son, age 24 at diagnosis
    July 2016 Diagnosis ALCL ALK-neg
    Sept 2016 E-CHOP x3; PET scan CR
    Nov 2016 Sixth and final round of E-CHOP completed - Continued to live alone and work two jobs through chemo!
    Dec 2016 PET scan CR
    March 2017 Experiencing symptoms; CT-PET scan shows relapse.
    April 2017 CD-30 confirmed w/ biopsy; Begin Brentuximab to reach CR for Auto transplant
    May 2017 Biopsy came back as Classical Hodgkin's - misdiagnosed initially
    June 2017 Only partial remission with Brent so on to ICE x 2 (worst yet)
    August 2017 Good response, but still PR, moving forward with ASCT. Outpatient at CBCI in Denver.
    October 2017 Clear scan after auto. Begin Brent for maintenance X3
    January 2018 PET-CT shows relapse. Begin Keytruda in Feb
    May 2018 CR after just one dose of Keytruda.
    Scan in August, 2018. ALL CLEAR

  3. #23
    Super Moderator Top User po18guy's Avatar
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    Quote Originally Posted by VMarie View Post
    Hi Po, Would love to know more about what you meant in your post abut auto transplant in upfront setting. It IS unnerving to read all the stories of ALCL folks here - many who relapsed after ASCT and had to go on to Allo. So how is it that ASCT is worth it? Are you saying if you relapse after chemo then there is no point in having an auto at that time?
    Thankfully, this question is a moot point now! With T-Cell Lymphomas, autologous (auto) transplants have a poor record in the relapse setting. They are better in first remission, but still no guarantee, as they only restore the same immune system which failed and allowed the lymphoma in the first place. Allogeneic (allo) transplants are administered with curative intent. But, that is only the intent, and relapse is still possible, and mortality runs from 10-30% for various reasons.

    There are often no clear-cut decisions in cancer treatment. Once you make a choice it often eliminates the other options, and there is no way of knowing if the choice you made was the best one. This is much uncertainty that must be weighed against the certainty of the cancer.

    CHOP in cases of ALCL/ALK+ and Brentuximab Vedotin in cases of ALCL/ALK- are about the only T-Cell treatments which demonstrate a very high response rate. The rest of us must make do with doctor's best guess as to treatment, and a 25-33% response rate.
    05/08-07/08 Tumor appears behind left ear. Followed by serial medical incompetence on the parts of PCP, veteran oncologist and pathologist (misdiagnosis via non-diagnosis). Providential guidance to proper care at an NCI designated comprehensive cancer center.
    07/08 Age 56 DX 1) Peripheral T-Cell Lymphoma-Not Otherwise Specified. Stage IV-B, >50 ("innumerable") tumors, bone marrow involvement.
    08/08-12/08 Four cycles CHOEP14 + four cycles GND (Cyclofosfamide, Doxorubicin, Vincristine, Etoposide, Prednisone & Gemcitabine, Navelbine, Doxil)
    02/09 2) Relapse.
    03/09-06/13 Clinical trial of Romidepsin > long-term study. NED for 64 twenty-eight day cycles, dose tapered.
    07/13 3) Relapse, 4) Suspected Mutation.
    08/13-02/14 Romidepsin increased, stopped for lack of response. Watch & Wait.
    09/14 Relapse/Progression. Visible cervical nodes appear within 4 days of being checked clear.
    10/06/14 One cycle Belinostat. Discontinued to enter second clinical trial.
    10/25/14 Clinical trial of Alisertib/Failed - Progression.
    01/12/15 Belinostat resumed/Failed - Progression. 02/23/15
    02/24/15 Pralatrexate/Failed - Progression. 04/17/15
    04/15 Genomic profiling reveals mutation into PTCL-NOS + AngioImmunoblastic T-Cell Lymphoma. Stage IV-B a second time. Two dozen tumors + small intestine (Ileum) involvement.
    04/22/15 TEC (Bendamustine, Etoposide, Carboplatin). Full response in two cycles. PET/CT both clear. Third cycle followed.
    06/15-07/15 Transplant preparation (X-rays, spinal taps, BMB, blood test, MUGA scan, lung function, CMV screening, C-Diff testing etc. etc. etc.) Intrathecal Methotrexate during spinal tap.
    BMB reveals 5) 26% blast cells of 20q Deletion Myelodysplastic Syndrome MDS), a bone marrow cancer and precursor to Acute Myeloid Leukemia.
    07/11-12/15 Cyclofosfamide + Fludarabine conditioning regimen.
    07/16/15 Total Body Irradiation.
    07/17/15 Moderate intensity Haploidentical Allogeneic Stem Cell Transplant receiving my son's peripheral blood stem cells.
    07/21-22/15 Triple dose Cyclofosfamide + Mesna, followed by immunosuppressants Tacrolimus and Mycophenolate Mofetil.
    07/23-08/03/15 Marrow producing zero blood cells. Fever. Hospitalized two weeks.
    08/04/15 Engraftment occurs, and blood cells are measurable - released from hospital.
    08/13/15 Day 26 - Marrow is 100% donor cells. Platelets climbing steadily, red cells follow.
    09/21/15 Acute skin Graft versus Host Disease arrives.
    DEXA scan reveals Osteoporosis.
    09/26/-11/03/15 Prednisone to control skin GvHD.
    11/2015 Acute GvHD re-classified to Chronic Graft versus Host Disease.
    05/2016 Tacrolimus stopped. Prednisone from 30-90mg daily tried. Sirolimus begun. Narrow-band UV-B therapy started, but discontinued for lack of response. One treatment of P-UVAreceived, but halted due to medication reaction.
    09/16/16 Three skin punch biopsies.
    11/04/16 GvHD clinical trial of Ofatumumab (Arzerra) + Prednisone + Methylprednisolone begun.
    12/16 Type II Diabetes, Hypertension - both treatment-related.
    05/17 Extracorporeal Photopheresis (ECP) begun in attempt to control chronic Graft-versus-Host-Disease (cGvHD. 8 year old Power Port removed and replaced with Vortex (Smart) Port for ECP.
    05/2017 Chronic anemia (low hematocrit). Chronic kidney disease. Cataracts from radiation and steroids.
    06/17 Trying various antibiotics in a search for tolerable prophylaxis.
    08/17 Bone marrow biopsy reveals the presence of 2% cells with 20q Deletion Myelodysplastic Syndrome, considered to be Minimum Residual Disease.
    12/17 Bone marrow biopsy reveals no abnormalities in the marrow - MDS eradicated. The steroid taper continues.
    01/18 Consented for Kadmon clinical trial.
    03/18 Began 400mg daily of KD025, a rho-Associated Coiled-coil Kinase 2 Inhibitor (ROCK2).
    09/18 Due to refractory GvHD, Extracorporeal Photopheresis halted after 15 months ue to lack of additional benefit.
    10/18 I was withdrawn from the Kadmon KD025 clinical trial due to increasing fatigue/lack of benefit.
    11/18 Began therapy with Ruxolitinib (Jakafi), a JAK 1&2 inhibitor class drug. Started at half-dose due to concerns with drug interactions.

    To date: 1 cancer, relapse, second relapse/mutation into 2 cancers, then 3 cancers simultaneously, 20 chemotherapy/GVHD drugs in 11 regimens (4 of them at least twice), 5 salvage regimens, 4 clinical trials, 5 post-transplant immuno-suppressant/modulatory drugs, the equivalent of 1,000 years of background radiation from 40+ CT series scans and about 24 PET scans.
    Both lymphoid and myeloid malignancies lend a certain symmetry to the hematological journey.

    Believing in the redemptive value of suffering makes all the difference.

  4. #24
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    Hey PO, Just thought I would mention that Dr. Shustov feels differently, unless I misunderstood him. I specifically asked him about auto in second remission vs. first and he said it would have the same/similar chance of success (if this was your first transplant, that is). So that means Brentuximab and auto stem cell with curative intent would be an option. Anyway, that surprised me. When I was reviewing my notes I decided I want to clarify that very important point, so I called his office. His nurse said she would double-check with him and let me know. I'll post back when I hear from her.

    He also told us my son has a 60% approximate of being cured now, with the CHOEP chemo.

    Here's a study you (and others) might find interesting. If a PTCL patient can get past the two year mark in remission, the odds and the force are with you to stay in remission. They found the 24 month mark to be significant. I found it very interesting (and encouraging, in our case) that Canada (BCAA - Kerry Savage) does not do transplant in first remission for PTCL (ZERO transplant in first remission) and their OS rates are quite similar to Sweden and Mayo Clinic, who transplanted at 32 and 15 percent, respectively. http://www.bloodjournal.org/content/...o-checked=true

    Quote Originally Posted by po18guy View Post
    Once a relapse has occurred, an autologous transplant is not expected to cure, or even to provide a long-term remission. We have seen some autos, even in first remission, that provided only 2-3 months of remission. That is a fairly poor record with T-Cell Lymphomas, and scarcely worth the risk, time and expense.
    Last edited by VMarie; 01-17-2017 at 02:17 AM.
    Researcher, advocate, and caregiver to my son, age 24 at diagnosis
    July 2016 Diagnosis ALCL ALK-neg
    Sept 2016 E-CHOP x3; PET scan CR
    Nov 2016 Sixth and final round of E-CHOP completed - Continued to live alone and work two jobs through chemo!
    Dec 2016 PET scan CR
    March 2017 Experiencing symptoms; CT-PET scan shows relapse.
    April 2017 CD-30 confirmed w/ biopsy; Begin Brentuximab to reach CR for Auto transplant
    May 2017 Biopsy came back as Classical Hodgkin's - misdiagnosed initially
    June 2017 Only partial remission with Brent so on to ICE x 2 (worst yet)
    August 2017 Good response, but still PR, moving forward with ASCT. Outpatient at CBCI in Denver.
    October 2017 Clear scan after auto. Begin Brent for maintenance X3
    January 2018 PET-CT shows relapse. Begin Keytruda in Feb
    May 2018 CR after just one dose of Keytruda.
    Scan in August, 2018. ALL CLEAR

  5. #25
    Quote Originally Posted by po18guy View Post
    Thankfully, this question is a moot point now! With T-Cell Lymphomas, autologous (auto) transplants have a poor record in the relapse setting. They are better in first remission, but still no guarantee, as they only restore the same immune system which failed and allowed the lymphoma in the first place. Allogeneic (allo) transplants are administered with curative intent. But, that is only the intent, and relapse is still possible, and mortality runs from 10-30% for various reasons.

    There are often no clear-cut decisions in cancer treatment. Once you make a choice it often eliminates the other options, and there is no way of knowing if the choice you made was the best one. This is much uncertainty that must be weighed against the certainty of the cancer.

    CHOP in cases of ALCL/ALK+ and Brentuximab Vedotin in cases of ALCL/ALK- are about the only T-Cell treatments which demonstrate a very high response rate. The rest of us must make do with doctor's best guess as to treatment, and a 25-33% response rate.
    I had an auto after first remission via Brentuximab. I remained in remission for 2 1/2 years after auto, before my relapse in May 2015. I do agree that there is something a bit incongruous about auto's, since as PO points out, we are just essentially re-booting the same immune system that was ineffective in fighting the lymphoma in the first place. So in retrospect, I guess not surprising I relapsed, tho I thought I had a good chance of no relapse after I made it past the 2 yr mark. And in any event, my auto did seem to cure a horrible skin condition that was also an auto immune disease that none of the dermatologists could figure out, and surely couldn't figure out a treatment for. This skin thing, mostly on my hands and feet. accompanied by an arthritic condition so bad I couldn't make a fist, was way worse than lymphoma for me.

    In any event, not an entirely wasted effort. And I was decidedly not so healthy when I did my auto....I drank alcohol, and smoked right up to the day I checked into the hospital for my transplant. While I was in the hospital for the requisite 25 days or so, I managed to quit smoking for good, and haven't had a drink of alcohol since either. I also lost 40 pounds, 35 of which I kept lost. When I got out, I got in shape for real. In 2013, the year after my auto, I worked up to running 5 5Ks. In 2014, I did a dozen. In 2015, 24, plus one 10K. In May of 2015, I relapsed, and did Brentuximab again for a bunch of cycles til my allo in February of 2016. It put me into remission pretty much straight away after 3 cycles, and we stayed there. 21 5Ks since my 100 day check up, plus I 10K.

    So the point of all this is to say my auto, while in the end it didn't cure my lymphoma, did give me time....2 1/2 years, to get my 64 yr old body back into shape, fit, and strong. Had I done an allo back in 2012, instead of the auto I did have, I am not sure it would have gone so well. As it is, I at least am convinced that the reason my allo has gone so well so far is the fitness regime I have pursued since 2012. And also probably that every time I have been diagnosed, always been stage 1 too, and without any obvious symptoms.

    I turn 65 in a month from tomorrow. I have my 1 yr post allo check up the first week of Feb. I have no idea how it will turn out, but whatever we find, I haven't felt so good in at least the last 20 years. My auto, while it didn't cure me of lymphoma, made a huge difference for me anyway. For what its worth.

    Hugs to all

    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.

  6. #26
    Super Moderator Top User po18guy's Avatar
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    Quote Originally Posted by VMarie View Post
    he said it would have the same/similar chance of success
    My stem cells have been cryogenically stored at SCCA since early 2009, yet an auto was not seriously considered. However, I see that I was included in a specific class mentioned in the ASH report:
    "Patients with early relapse from PTCL have extremely poor outcomes."
    I relapsed immediately. After second remission, I relapsed again at 54 months. Not only a relapse, but mutation into PTCL plus AITL, extra-nodal involvement, with MDS thrown in for good measure. That third remission was a hard-fought battle and expended all anti-lymphoma drugs. The odds in favor of successfully fighting to a fourth remission were astronomical and unreasonable. Due to my age and the damage to my organs from the years of treatment, a haplo was considered to be as close to ideal as possible. Haplos are tending to show less GvHD in general than pure allos. However, let us be thankful that, in your son's case, this is all moot.
    Last edited by po18guy; 01-17-2017 at 06:39 AM.
    05/08-07/08 Tumor appears behind left ear. Followed by serial medical incompetence on the parts of PCP, veteran oncologist and pathologist (misdiagnosis via non-diagnosis). Providential guidance to proper care at an NCI designated comprehensive cancer center.
    07/08 Age 56 DX 1) Peripheral T-Cell Lymphoma-Not Otherwise Specified. Stage IV-B, >50 ("innumerable") tumors, bone marrow involvement.
    08/08-12/08 Four cycles CHOEP14 + four cycles GND (Cyclofosfamide, Doxorubicin, Vincristine, Etoposide, Prednisone & Gemcitabine, Navelbine, Doxil)
    02/09 2) Relapse.
    03/09-06/13 Clinical trial of Romidepsin > long-term study. NED for 64 twenty-eight day cycles, dose tapered.
    07/13 3) Relapse, 4) Suspected Mutation.
    08/13-02/14 Romidepsin increased, stopped for lack of response. Watch & Wait.
    09/14 Relapse/Progression. Visible cervical nodes appear within 4 days of being checked clear.
    10/06/14 One cycle Belinostat. Discontinued to enter second clinical trial.
    10/25/14 Clinical trial of Alisertib/Failed - Progression.
    01/12/15 Belinostat resumed/Failed - Progression. 02/23/15
    02/24/15 Pralatrexate/Failed - Progression. 04/17/15
    04/15 Genomic profiling reveals mutation into PTCL-NOS + AngioImmunoblastic T-Cell Lymphoma. Stage IV-B a second time. Two dozen tumors + small intestine (Ileum) involvement.
    04/22/15 TEC (Bendamustine, Etoposide, Carboplatin). Full response in two cycles. PET/CT both clear. Third cycle followed.
    06/15-07/15 Transplant preparation (X-rays, spinal taps, BMB, blood test, MUGA scan, lung function, CMV screening, C-Diff testing etc. etc. etc.) Intrathecal Methotrexate during spinal tap.
    BMB reveals 5) 26% blast cells of 20q Deletion Myelodysplastic Syndrome MDS), a bone marrow cancer and precursor to Acute Myeloid Leukemia.
    07/11-12/15 Cyclofosfamide + Fludarabine conditioning regimen.
    07/16/15 Total Body Irradiation.
    07/17/15 Moderate intensity Haploidentical Allogeneic Stem Cell Transplant receiving my son's peripheral blood stem cells.
    07/21-22/15 Triple dose Cyclofosfamide + Mesna, followed by immunosuppressants Tacrolimus and Mycophenolate Mofetil.
    07/23-08/03/15 Marrow producing zero blood cells. Fever. Hospitalized two weeks.
    08/04/15 Engraftment occurs, and blood cells are measurable - released from hospital.
    08/13/15 Day 26 - Marrow is 100% donor cells. Platelets climbing steadily, red cells follow.
    09/21/15 Acute skin Graft versus Host Disease arrives.
    DEXA scan reveals Osteoporosis.
    09/26/-11/03/15 Prednisone to control skin GvHD.
    11/2015 Acute GvHD re-classified to Chronic Graft versus Host Disease.
    05/2016 Tacrolimus stopped. Prednisone from 30-90mg daily tried. Sirolimus begun. Narrow-band UV-B therapy started, but discontinued for lack of response. One treatment of P-UVAreceived, but halted due to medication reaction.
    09/16/16 Three skin punch biopsies.
    11/04/16 GvHD clinical trial of Ofatumumab (Arzerra) + Prednisone + Methylprednisolone begun.
    12/16 Type II Diabetes, Hypertension - both treatment-related.
    05/17 Extracorporeal Photopheresis (ECP) begun in attempt to control chronic Graft-versus-Host-Disease (cGvHD. 8 year old Power Port removed and replaced with Vortex (Smart) Port for ECP.
    05/2017 Chronic anemia (low hematocrit). Chronic kidney disease. Cataracts from radiation and steroids.
    06/17 Trying various antibiotics in a search for tolerable prophylaxis.
    08/17 Bone marrow biopsy reveals the presence of 2% cells with 20q Deletion Myelodysplastic Syndrome, considered to be Minimum Residual Disease.
    12/17 Bone marrow biopsy reveals no abnormalities in the marrow - MDS eradicated. The steroid taper continues.
    01/18 Consented for Kadmon clinical trial.
    03/18 Began 400mg daily of KD025, a rho-Associated Coiled-coil Kinase 2 Inhibitor (ROCK2).
    09/18 Due to refractory GvHD, Extracorporeal Photopheresis halted after 15 months ue to lack of additional benefit.
    10/18 I was withdrawn from the Kadmon KD025 clinical trial due to increasing fatigue/lack of benefit.
    11/18 Began therapy with Ruxolitinib (Jakafi), a JAK 1&2 inhibitor class drug. Started at half-dose due to concerns with drug interactions.

    To date: 1 cancer, relapse, second relapse/mutation into 2 cancers, then 3 cancers simultaneously, 20 chemotherapy/GVHD drugs in 11 regimens (4 of them at least twice), 5 salvage regimens, 4 clinical trials, 5 post-transplant immuno-suppressant/modulatory drugs, the equivalent of 1,000 years of background radiation from 40+ CT series scans and about 24 PET scans.
    Both lymphoid and myeloid malignancies lend a certain symmetry to the hematological journey.

    Believing in the redemptive value of suffering makes all the difference.

  7. #27
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    David - your workout ethic is incredible! Just amazing. What a turnaround for you over the last several years. My brother had a followup today in NY with Dr. Sauter and all looks really great. He is about two months behind you and will have his year PET scan in April. I'm praying for both of you to have clear scans and a clear path forward to a long life!

  8. #28
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    Excellent to hear, David. I'm so happy to know you are doing so well!!

    My son vapes (he refuses to call it "smoking"" and has convinced himself it's "safe") and tells me "it helps him cope" with having cancer hanging over his head. He also drinks, moderately. Nothing I can say will change his mind on these two things. The moderate drinking I can live with, the vaping, not so much. To be honest, the one thing I WAS thinking as a positive to stem cell is he would have to quit both, just as you did. But I do think stem cell transplant is a bit of a drastic stop-smoking measure! (Okay, that was a joke!). Seriously, I can only push so much (eat better, stop smoking, get in an exercise program, sleep more than five hours a night...) and it just falls on deaf ears and pushes him away from me. Somehow a cancer diagnosis has not given him the incentive to take better care of himself. Please don't get me wrong, I love my son more than I could ever put into words, but I know when my "advice" is falling on deaf ears, and it's painful to witness.

    <<I turn 65 in a month from tomorrow. I have my 1 yr post allo check up the first week of Feb. I have no idea how it will turn out, but whatever we find, I haven't felt so good in at least the last 20 years. My auto, while it didn't cure me of lymphoma, made a huge difference for me anyway. For what its worth.>>
    Researcher, advocate, and caregiver to my son, age 24 at diagnosis
    July 2016 Diagnosis ALCL ALK-neg
    Sept 2016 E-CHOP x3; PET scan CR
    Nov 2016 Sixth and final round of E-CHOP completed - Continued to live alone and work two jobs through chemo!
    Dec 2016 PET scan CR
    March 2017 Experiencing symptoms; CT-PET scan shows relapse.
    April 2017 CD-30 confirmed w/ biopsy; Begin Brentuximab to reach CR for Auto transplant
    May 2017 Biopsy came back as Classical Hodgkin's - misdiagnosed initially
    June 2017 Only partial remission with Brent so on to ICE x 2 (worst yet)
    August 2017 Good response, but still PR, moving forward with ASCT. Outpatient at CBCI in Denver.
    October 2017 Clear scan after auto. Begin Brent for maintenance X3
    January 2018 PET-CT shows relapse. Begin Keytruda in Feb
    May 2018 CR after just one dose of Keytruda.
    Scan in August, 2018. ALL CLEAR

  9. #29
    VM

    Since I smoked for nearly 40 years, I am not in much of a position to criticize. But yeah, when I do my periodic visits to the Huntsman Cancer Institute, I generally tease my providers about running a very, very expensive health spa. lol. Anyway, one thing is absolutely true. Your son will figure this out--or not figure it out--on his own. Yipping at him will likely not help. Never did with my kids, anyway. So just be supportive of all the good things he is about, and hope for the best. You have done him an amazing turn in terms of getting him to Seattle to see Dr. Shustov, and by not just settling for the first opinion. But one thing he needs to understand, there is no certainty in this business. Maybe the E-CHOP cured him. I absolutely hope so, and given how young he is, it seems to make that more likely. But relapses are not unheard of, and if, God forbid, he ever has to deal with this stuff again, the healthier he is, the better it will go for him. Just saying.

    Anyway, so pleased you have answers that make sense for you....they make sense for me too. That said, he is your baby....the most important thing you can do is love him, but let him decide how he wants to live his life. He will, like the rest of us, recalibrate what that is from time to time, and lets hope that when he does that, he will start making healthier choices. He knows absolutely what those choices are....he just needs to find within himself the wisdom, determination and resolve to pick them.

    Hugs and much love

    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.

  10. #30
    Senior User
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    It's always good to hear from you, David. Thank you! He does know about relapse and he was ready to go through with stem cell with no complaint if that's what was needed. I don't want to scare him, on one hand, by constant reminders of relapse, but when his actions (about taking care of himself) don't add up, I feel a bit at wit's end as to the most helpful thing to do. I think we will have one more "healthy lifestyle" talk because he was thrown for a loop switching gears at the last minute with no stem cell and then immediately back into "now I have to find a new job, pronto" etc and doing it all with cancer hanging over his head - and I wanted to give him a breather from any "well intentioned advice" on my end. Every minute I spend with him is so precious to me, sometimes we just need to forget about the cancer and enjoy our time together. We managed a nice dinner out at "How to Cook a Wolf" and a visit to the very fun MoPOP museum during our trip to Seattle to see Dr. Shustov. That was really great.
    Thanks again - love to you - Vmarie
    Researcher, advocate, and caregiver to my son, age 24 at diagnosis
    July 2016 Diagnosis ALCL ALK-neg
    Sept 2016 E-CHOP x3; PET scan CR
    Nov 2016 Sixth and final round of E-CHOP completed - Continued to live alone and work two jobs through chemo!
    Dec 2016 PET scan CR
    March 2017 Experiencing symptoms; CT-PET scan shows relapse.
    April 2017 CD-30 confirmed w/ biopsy; Begin Brentuximab to reach CR for Auto transplant
    May 2017 Biopsy came back as Classical Hodgkin's - misdiagnosed initially
    June 2017 Only partial remission with Brent so on to ICE x 2 (worst yet)
    August 2017 Good response, but still PR, moving forward with ASCT. Outpatient at CBCI in Denver.
    October 2017 Clear scan after auto. Begin Brent for maintenance X3
    January 2018 PET-CT shows relapse. Begin Keytruda in Feb
    May 2018 CR after just one dose of Keytruda.
    Scan in August, 2018. ALL CLEAR

 

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