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Thread: CHOP Experience, to an auto SCT for AITL / PTCL

  1. #11
    Experienced User
    Join Date
    Nov 2017
    Days 7 to 10 were a killer to my wife....we learn to prepare for those but have more meals ready and ignore all the pending tasks.
    Rest was mandatory and if any energy was left we would just walk outside and get some fresh air.

    Dont try to push it, if you are tired just rest/sleep, let the body recover.
    Nov/17 : Wife 36y diagnosed DLBC NHL in the Breast ( Stage 1AE )
    Nov/17 : Started 6 x RCHOP 21 ( finished Mar 2018 )
    Apr/18 : PET/CT early April confirmed in Complete Metabolic Response
    On to 15x Radiation ( total of 30Gys )
    May/18: Rads done
    Ago/18: 3x HDMTx completed!
    Dev/18: PET-CT Done. All good
    Apr/19: Follow up. All good.
    Oct/19: Follow up. All good.
    ... on to follopw ups...

  2. #12
    Experienced User
    Join Date
    Apr 2019
    Kermica - you, Sir were right on target with the pneumonia point. After a four day stay in the hospital a fungal infection was isolated and is being treated. Evidently this is not unusual for someone who has taken large doses of dexamethasone. Two days of medication and feeling much stronger. Thanks!
    Last edited by jwessel; 05-12-2019 at 04:23 PM.

  3. #13
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    I have had pneumonia twice since being on post-transplant high-to-medium dose prednisone. I contrast this to zero infections through seven years of lymphoma treatment. Prednisone has it uses, and aside from being an anti-inflammatory, is also an immune supressant. It shows.
    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.
    11/19 MRI of brain reveals apparently benign frontal lobe tumor. Has the appearance of a cerebral cavernoma. Watch & wait on that.

    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. #14
    Experienced User
    Join Date
    Apr 2019

    Third cycle update

    Quote Originally Posted by jwessel View Post
    This is the list of drugs; cyclophosphamide, doxorubincin, vincristine, prednisone. I was not prepared for the dramatic fall off in energy level between cycle one and two. Third cycle is next week and then I will have enough data points to plot a trend.
    With the pneumonia under control the third CHOP cycle was the easiest yet. It appears the symptoms I had associated with the Neulasta were actually the fungal infection asserting itself as my resistance hit its low point. The first cycle as a sinus infection and the second cycle settling into the lungs. This cycle no symptoms after the Neulasta triggered. Optimistic to see this thing through. Thanks everyone for the helpful insight.

  5. #15
    Moderator Top User
    Join Date
    Mar 2010
    good update and bodes well for the remaining cycles, just watch for fatigue creeping in.
    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.

  6. #16
    Experienced User
    Join Date
    Apr 2019

    Diagnosed 15 Feb 19 with AITL, or perhaps PTCL w/ a helper

    Sincere thanks to the dedicated posters on this site. Your experiences and insights have been invaluable to me regarding something I knew little about a few short months ago. My apologies in getting right to asking questions before posting a proper introduction of my case history. Now that things have settled into a routine between treatment cycles - this is my best to correct that!

    Hopefully, for others going through this, it will provide some reminder that you are not alone. There are others taking this surprise detour in life as well.

    I am a 63 year old, married, father of three, grandfather of two. I was diagnosed on 15 Feb 19 with aggressive AITL. A second pathology review expanded this diagnosis to include acute AITL or PTCL with a helper cell. It could not be definitive due to not enough biopsy material being available. Unfortunately, as it was explained, both are equally aggressive and venomous, and both have the same care plan of six cycles of CHOP followed immediately by an auto stem cell transplant, if close to complete remission is achieved.

    There was very little lead up to this diagnosis. I was generally very fit, without being an extreme athlete. I was a dedicated, 9 year Bikram yoga practitioner, which is 90 minutes of demanding workout done in a room heated to 106 degrees F.

    Over the holidays, with the grandchildren visiting, I had contracted a respiratory infection and stomach virus. My immune system must have already been weakened because the symptoms were extreme. But I recovered and started back with my heated workouts.

    21 Jan 2019 I successfully completed my last Bikram class and considered myself recovered and back on track. The next day this adventure began when I noticed a growing bulge above my left collar bone and began to have significant lower abdominal pain. I went to the local Med Access to have these conditions assessed. They promptly dispatched me to the local Emergency Room out of concern for appendicitis.

    After ordering and reviewing a CT Scan with contrast, the ER doctor indicated that my appendix was fine but that I should immediately see an oncologist. I must say I felt a little annoyed and amused because I considered myself to be in good health and this couldn't possibly be necessary.

    One week later, after reviewing my symptoms and the CT report, the oncologists first words were, " I fear we are dealing with a serious form of lymphoma, some of which may not be curable". I was pretty much in denial. What followed was three weeks of scheduling and waiting for results from a biopsy and PET scan. In the mean time I made every effort to find out that this must be something else, like a thyroid issue or mono, but those tests came back negative.

    During the three week wait for test results the lymphoma symptoms became very aggressive. Full body itching, such that I would stay fully dressed at night with a light jacket to keep from scratching directly on my skin. Continual sweating. Increased pain to where it felt like I had a hernia and pulled groin muscle. I ended up restricted to moving between the bed and couch and, to try and get some sleep, was on morphine topped off by extra strength Tylenol.

    On 15 Feb 2019 the results were back and the oncologist confirmed an aggressive form of AITL Stage 3B and said, "untreated, you probably have 4-6 months to live, get a port installed and start CHOP immediately followed by a stem cell transplant". I was in shock but ready to start any treatment which would get the "B" symptoms to stop.

    Unfortunately we were not at our permanent residence, but at a warmer location where we had spent the last 10 winters. We needed to get back to our permanent home where my wife would have a stronger support network. To get us back the oncologist prescribed a max dose of dexamethasone - which worked like a miracle drug! It gave us two wonderful weeks to close things down and travel symptom free. Unfortunately by the third week I could recognize the "B" symptoms returning.

    The pathology lab at the local facility where I chose to be treated reviewed the slides and expanded the diagnosis, because a core biopsy had been done and there was not enough tissue to conclusively differentiate. The recommended treatment stayed the same, 6 cycles of CHOP followed by an auto SCT

    1 Mar 19 I started my first CHOP cycle. A short 6 weeks from first visit to the doctor. Life had become all about focusing on what needed to be done in the short term. No more buying green bananas!

    My wife and I have just returned from a consultation at MSK where we received confirmation that, given the specific expressions of my T Cell issues, there are no other options for me other than continuing on the current path. They acknowledged that this is an old, rudimentary treatment. This was because of some cell expressions; like being CD30 negative, etc. which eliminated some more current options. Unfortunately it is the only one available to me.

    If this thing comes back, an excision biopsy will be done then and an updated diagnosis will be available. Hopefully it will have mutated to something more treatable. So, in the mean time, I continue resolutely CHOPing my way towards that daunting Stem Cell Transplant.

    Fortunately the CHOP cycles have become routine, after a bout with fungal pneumonia was cured, and I have tolerated them reasonably well. The CT scan after the third cycle showed expected response towards the level of remission needed. Hopefully that will be confirmed by the PET at the end of the six cycles.

    There are no life events or history which I can blame for developing this disease, other than perhaps my parents for giving me northern European genes and for making life choices which caused me to be born 6 weeks premature in the lymphoma belt of equatorial Africa. This caused a weakened immune system and I contracted the prerequisite malaria at a young age. However, this is usually associated with Burkett's and EBV, neither of which I have.

    Looking back, perhaps there were early events where I could have become aware of this:

    2014 - I had slightly enlarged lymph nodes in my neck. I was referred to an Oncologist and his words were; "At your age we obviously think of lymphoma. We could do a biopsy or we could watch it for a few months. Nothing bad ever gets smaller. So if the nodes shrink, you have nothing to worry about."

    Waiting a few months seemed more pleasant than someone digging around in my neck, so that seemed like an easy choice. Well, the nodes got smaller and I went along my merry way. It now seems like that was bad advice, that lymphoma can cause nodes to wax and wane - bad things can indeed get smaller.

    2017 - I suddenly lost noticeable flexibility in my yoga practice. At the same time I had some swelling and tenderness in my inguinal lymph nodes. I was mostly concerned with the loss of flexibility and underwent testing for arthritis. Because the symptoms were symmetrical the concern was rheumatoid arthritis. A low dosage of Prednisone was prescribed which had some immediate benefit. Testing was negative for arthritis and the doctors closing comment was "you do not have arthritis, but I would find out why you have swollen lymph nodes, those are not related" It was close to the time for my annual physical so I raised the issue then. By that time, the swelling in my lymph nodes had almost subsided. Again, under the impression that, "nothing bad ever gets smaller", I chose to continue to watch. They got smaller and, again, I went along my merry way.

    2018 - inguinal lymph node swelling returned. My presumption was that they would soon get smaller and must be due to over stretching in yoga. Other annoying symptoms were soon to join, like constant sniffles and head cold like symptoms which would just not go away. Odd stiffness and feeling of numbness along the outside of one ankle started. Then a little itchiness joined, mostly along the ear lobes.

    So here we are in 2019 and life has changed dramatically. I am mostly thankful for being blissfully ignorant of what was brewing over the last few years. As it has been explained to me, the treatment would have been the same even if this disease had been caught as a pup. During this time I was able to help my wife through a reoccurrence of breast cancer and we were given a year respite before dealing with my issues.

    Sorry if I have gone on too long. I will try to keep any updates to the point.
    Last edited by jwessel; 07-21-2019 at 04:20 PM.

  7. #17
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    I merged your threads so as to keep this all under one roof, so to speak. It makes replying easier and reduces confusion.

    Anyway, this stuff is rather sneaky, no? It masquerades as other, less serious and more common conditions. Good that it is responding so well to CHOP. I am a bit surprised, actually. However, the fewer drugs it takes to chase it away, the better.

  8. #18
    Experienced User
    Join Date
    Apr 2019
    Great, thanks! Still learning what is the best structure to use the blog so that future people searching for like experiences or answers to specific questions can quickly find what they are looking for. I guess through the magic of modern search the content of a post will be searched as well as the titles.

    Yes, this was sneaky until it reached critical mass and then the explosion of symptoms required full attention!
    63 years old.
    21 Jan 19 - Victorious Bikram 90 Min Hot Yoga!
    22 Jan 19 - Referred to ER for potential appendicitis, CT w/ contrast was negative for appendicitis but was informed I should see an oncologist ASAP, amused & annoyed
    25 Jan 19 - First visit with oncologist - first words, " I fear we are dealing with a serious form of Lymphoma, some which is not curable", PET Scan and Biopsy ordered, in denial
    14 Feb 19 - "B" symptoms debilitating, on Morphine top off with Extra Strength Tylenol, no longer in denial
    15 Feb 19 - Diagnosed Acute AITL - Stage 3B, 6 cycles CHOP and Auto SCT immediately following recommended, in shock
    01 Mar 19 - First CHOP cycle on way to SCT, resolved to see this thing through!
    19 Jun 19 - Last CHOP cycle
    03 Jul 19 - Scheduled for Transplant
    05 Aug 19 - Transplant deferred, lung surgery to remove growing nodule
    29 Aug 19 - Re-scheduled for Transplant
    23 Sep 19 - Admitted for Auto Transplant
    12 Oct 19 - Discharged from Transplant to home recovery

  9. #19
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    There are more combos and options than when I had active lymphoma - so technically no one should freak out, despite the universally "poor" prognosis. At lot of progress is being made against T-Cell Lymphomas, because a lot of progress needs to be made.

  10. #20
    Senior User
    Join Date
    Jan 2015
    I enjoyed reading your history. It is similar to my brother's journey - he was diagnosed at age 56. And yes, he too had several instances over the years where odd symptoms appeared. Once he was hospitalized while on vacation with mysterious flu like symptoms, and another time, he went through a few months of severe joint stiffness. He saw lots of doctors, including an infectious disease specialist. His stiffness eventually went away on its own. So when the B symptoms started, he also went to various doctors to find out what was going on. He ended up in the ER after a bout of pain, and the ER physician said "you might have cancer", and his response was to laugh and actually get a little angry. How dare that doctor say that! Anyways, all in all, after 6 months of waiting to be diagnosed, AITL was confirmed. He also did CHOP, and then a SCT. Went to MSK for another opinion because his cancer returned after the SCT, and eventually after another year of developing B cell lymphoma, and undergoing a trial at MSK to get both cancers in remission, had an allo from a nonrelated donor, which saved his life. Here we are 3 years later and he is doing very well!! So keep up with your great progress and let us know how you are faring. You will find lots of great support here- and as Po said, there are so many other drugs and drug combos out there now that can be utilized when and if needed.


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