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

  1. #1
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    Caregiver and mom to 24-year old son diagnosed July 2016 with S-ALCL ALK-negtive

    Dear David and all on this forum,

    I am so grateful to have found you all, I could almost cry. David, to have found someone that has a similar diagnosis to my son's that we can actually talk to, is nothing short of miraculous, considering the rarity of systemic ALCL + ALK-neg. And to know how well you have done with all you have been through! PO I see that you are also a T-Cell survivor!!!

    I know I need to put this in my signature so it does not have to be repeated, but first I have to figure out how to do that.
    My son, Chris, was officially diagnosed in July. The Bad news: Stage IV, systemic, B Symptoms, Bulky, 2 extranodal sites (liver and lung), ALK-neg, DUSP-22-neg. The Better news: Normal LDH, Young age, normal B2m, TP16-neg, IPI score: 2, PIT score: 0, IPTCLP score: 0, mPIT score: 0. (Gotta love those zeros!) Here's the info on how to compute all those scores, if you are interested: http://annonc.oxfordjournals.org/con...nc.mdq359.full).

    The best news up to this point: Clear based on PET scan after 3 rounds of CHOEP! He has three more rounds to go, followed by upfront auto stem cell transplant through Colorado Blood Cancer Institute-Presbyterian/ St. Luke's in Denver.

    I have so many questions and a deep desire to share and compare research notes, if anyone is interested in that end of things. In my fantasy world, our doctors would be researching all the latest clinical evidence or requesting the latest research and calling up their colleagues at the top-rated cancer centers to compare notes, but that is not even close to our reality. Fortunately, I am a journalist with a background in research and health and I know how to read clinical studies, so I've stepped in to do my best to fill the gap. And if I can make a difference and help anyone else in the process, I would love that.

    For example, I found out about DUSP-22 from my research. Our provider (Kaiser) was not aware and was not going to have it checked! In my opinion, based on the research, this is a total game-changer for ALK-neg and should always, always be checked in pathology. (For more info on DUSP-22 and why it's so important, here is the reference. [Note DUSP-22 is only applicable to ALK-neg ALCL] : https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4148769/ and https://www.ncbi.nlm.nih.gov/pubmed/26379151)

    Again, grateful to have found this forum and grateful to all of you for sharing your experience here.

    -V

    Quote Originally Posted by David52 View Post
    Hey PO,

    Thanks for asking! I have so very little to report, I sometimes forget to give relevant updates. Had Dr. apt last week with my transplant folks in Salt Lake City. All continues to look fine. Creatinine level continues to be a touch high, but not worrisomely so. Blood work all was otherwise fine, at least for a transplant guy.... I am feeling fine so far, no sign of GvHD to speak of, other than a bit of skin itchiness that is hardly noticeable. Am running a couple miles a day during the week, and working out with my personal trainer, and try to get in a 5K on the weekends. They still figure my times with a sun dial or calendar, but were are slowly getting back in shape. And still working full time and enjoying that mostly.

    So not much to say really. I check in here most every day to see how you and everyone else is doing, and cheer lead as much as I can. And I try to be as active as I can here and in SLC doing fundraisers for cancer research and for groups that provide services for cancer patients who otherwise couldn't afford them. I always cared, in a sort of regular way, about cancer and those it afflicted. But since my journey with this stuff began 4 years ago, I've developed a special kinship with both my fellow survivors and my special caregivers, and it has truly changed my life. I hate cancer, but having fought it these last 4 years has changed me, mostly for the good. You probably know what I mean.

    Anyway, I am rambling. Glad things seem to be turning around in the right direction for you.....and have a great trip representing us all in Hawaii!

    Best always

    David

  2. #2
    Super Moderator Top User po18guy's Avatar
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    VMarie, I made up a thread dedicated to your son's treatment and transplant. It deserves attention of its own and I will see if I can get a member who has a ton of experience with ALCL ALK- to chime in here. As I mentioned, you can contact Dr. Shustov via the contact page of his foundation. However, Dr. Julie Vose is one of the acknowledged T-Cell 'experts' in the US (one of the few across the globe, actually), and I would have no problem following her advice. Since T-Cell Lymphomas are so rare, and so little is known about them, expert opinions will honestly vary. Each of us is helping to establish a standardized treatment for them, although they are so incredibly varied that this may not happen for decades.

    Edit: One advantage that ALCL patients have (if you can call having ALCL and advantage) is that the tumor cells are CD30+. That means that SGN-35 (Adcetris) an be effective against it. To the best of my knowledge, ALCL is the only T-Cell Lymphoma that expresses CD30.
    Last edited by po18guy; 09-29-2016 at 04:58 PM.
    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.

  3. #3
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    Hi,

    I'm sorry it took me so long to read this. My son was diagnosed way back in early 2008 with ALCL ALK negative systemic. At that time the recommended treatment was CHOP and he relapsed in 2 years and went on to an auto transplant. So much has been learned from then in the treatment of it.

    The auto transplant was really tough after the relapse as he had to have rescue/salvage chemo, TBI, then the auto. He did relapse after that as well and went on to have an unrelated allo transplant and is doing well after that (been just over 3 years since the allo).
    son with t-cell ALCL-. CHOP; autologous; MUD allo.

  4. #4
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    Thank you for your post, Mamapell! Sounds like your son as been through a lot. I am so happy to hear he is doing well 3 years post allo! The difference since then is the option to add Etopocide to CHOP (CHOEP) and frontline auto stem cell without waiting for relapse. There is still not a lot of evidence re frontline auto stem cell, but it's about all they've got. They've made some advances re drugs approved for relapse but those are not yet available for frontline, although a least one is in a phase 3 clinical study right now. The fact that your son is doing well now does give me hope and I appreciate hearing from you. -V

    Quote Originally Posted by mamapell View Post
    Hi,

    I'm sorry it took me so long to read this. My son was diagnosed way back in early 2008 with ALCL ALK negative systemic. At that time the recommended treatment was CHOP and he relapsed in 2 years and went on to an auto transplant. So much has been learned from then in the treatment of it.

    The auto transplant was really tough after the relapse as he had to have rescue/salvage chemo, TBI, then the auto. He did relapse after that as well and went on to have an unrelated allo transplant and is doing well after that (been just over 3 years since the allo).
    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. #5
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    I guess the best new drug for ALCL ALK- is Brentuximab which got my son to the allo transplant. Yes, they also added E after he did CHOP. At least it seems there is more research now than when he was first diagnosed which I am pleased about.

    The best is the tenacious advocate of a parent (especially us mom's!!). I have only heard (and was in contact with) one person who had ALCL ALK- that has not relapsed in over 7 years after an auto so you never know-your son could be in that category. My son and I were actually very shocked when he relapsed after his auto because he was feeling great, looking great, and no real signs of the relapse until the doctor discovered a lump that needed biopsied.

    I sent you a private message as well. You know how to research and dig but remember-some times what you read is "old" news so please keep a positive outlook.
    son with t-cell ALCL-. CHOP; autologous; MUD allo.

  6. #6
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    I'm an ALCL ALK- 2 years post allo SCT, 18 months in remission. 5 rounds of CHOP, 1 round ICE, 3 rounds of Brentuximab, still had a few nodes remaining, Allo SCT, still had one node 60 days post Transplant. At 90 days started Brentuximab, 5 more rounds. February 2015 clear PET.
    I live in Hawaii so went to City of Hope for transplant. I can't imagine doing SCT out patient, but I needed happy morphine button and lots of friendly nurses. I had constant attention and besides a nurse that was in and out all day, a RT guy that would make me rinse mouth 3 times a day. I also had a TPN line. I wish I had stopped trying to eat and gotten the TPN line sooner. Good luck. 24 year olds are strong! I did reduced intensity conditioning 5 days Fludarabine, then Melphalan. I was not offered option to do it outpatient maybe because allogenic can have more complications?
    Good luck...he can survive this! Stay positive and stay strong! He is lucky his has you.
    Aloha,
    Alison

  7. #7
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    Greetings po18guy,

    Here's the low down on CD30. Just wanted to post this for anyone else that might come to this thread, as certain Hodgkin Lymphomas, etc. can also be CD30 positive. And, of course, systemic ALCL ALK-positive, or systemic ALCL ALK-Negative WITH DUSP-22 rearrangement, are generally chemo sensitive and frontline treatment is CHOP only, with overall very good results -which is huge advantage compared to systemic ALCL ALK-negative without DUSP-22 (my son's diagnosis) with high relapse; frontline treatment is CHOEP with ASCT as long as remission is attained.

    <<CD30 is abundantly and selectively expressed on the surface of Hodgkin Reed-Sternberg cells, anaplastic large cell lymphomas (ALCLs), and other lymphoid malignancies as well as on several non-lymphoid malignancies including selected germ cell tumors. Expression of CD30 on normal cells is highly restricted, thereby allowing differential targeting of malignant cells. CD30, a member of the tumor necrosis factor (TNF)-receptor family has pleiotropic biologic functions, and antibodies targeting CD30 and other TNF family receptors can exhibit both agonistic and antagonistic signaling functions. Recently, antibody-drug conjugates targeting CD30, such as brentuximab vedotin, have shown striking activity in phase I and II trials, with manageable toxicity. This has defined an important emerging role for targeting of CD30 in the setting of Hodgkin lymphoma, ALCL, and possibly other CD30+ malignancies.>>
    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

  8. #8
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    Hi Alison! Thank you for replying. So wonderful to hear that you are in remission!!

    Did CHOP not work for you so they went to ICE and Brentuximab, and then allo? Your course of treatment seems unusual and I would love to know more. I've checked everyone/everywhere/everything I can and the only frontline course that's out there for systemic ALCL ALK-negative seems to be CHOP or CHOEP followed by auto stem cell - unless the disease doesn't respond, which then opens the door to clinical trials or Brentuximab, etc.

    And yes, I think Allo is almost always done inpatient. Did you have a sibling donor?


    Quote Originally Posted by Alison60 View Post
    I'm an ALCL ALK- 2 years post allo SCT, 18 months in remission. 5 rounds of CHOP, 1 round ICE, 3 rounds of Brentuximab, still had a few nodes remaining, Allo SCT, still had one node 60 days post Transplant. At 90 days started Brentuximab, 5 more rounds. February 2015 clear PET.
    I live in Hawaii so went to City of Hope for transplant. I can't imagine doing SCT out patient, but I needed happy morphine button and lots of friendly nurses. I had constant attention and besides a nurse that was in and out all day, a RT guy that would make me rinse mouth 3 times a day. I also had a TPN line. I wish I had stopped trying to eat and gotten the TPN line sooner. Good luck. 24 year olds are strong! I did reduced intensity conditioning 5 days Fludarabine, then Melphalan. I was not offered option to do it outpatient maybe because allogenic can have more complications?
    Good luck...he can survive this! Stay positive and stay strong! He is lucky his has you.
    Aloha,
    Alison
    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. #9
    VMarie:

    As you can see from my signature, CHOP didn't work for me at all. I got progressively worse after three rounds of it. My hematologist at Huntsman then put me on Brentuximab, and I was in remission after 3 rounds of it. My lymphoma is pretty much all CD30+, so Brentuximab was designed for me. And after I relapsed in 2015, I went back on that drug, and stayed with it until my allo transplant. It worked just as well the second time. It just seemed not to be curative for me.....but it has twice saved my life, anyway.
    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. #10
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    I know I'm late to this thread, but I just wanted to add my story. I was diagnosed with ALCL, ALK-negative stage 2A bulky, at 22 years old when I was entering my 3rd trimester of my second pregnancy. I started CHOP the following week (after delivering the baby 12 weeks early) and did 4 rounds. The plan was for 6 but I was in complete remission after the 3rd round so they cut it short. Then 2 months later I did an auto transplant with BEAM conditioning.

    I'm now almost 2 years post-transplant. So far so good, but worried about relapse always. I've met 2 other young women online who were diagnosed with ALCL (one was ALK-negative, one was ALK-positive) during pregnancy, or immediately following pregnancy, as well. Good luck to everyone! It's helpful to know that there are others out there.

 

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