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

  1. #1
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    CHOP Experience, to an auto SCT for AITL / PTCL

    I am going through six cycles of CHOP. The first cycle was relatively uneventful, except for a nasty head cold. I had every confidence that, absent the head cold, I would make it though the six cycles.

    The second cycle started similar. I tolerated the infusion well without a reaction to the chemicals. What followed was two weeks of extreme fatigue, a dry cough, and difficulty in absorbing enough oxygen. At the low point it totally rocked my confidence that I would make it through another cycle, let alone four more. It is now two weeks into the three week cycle and I am starting to feel a little more energy. Both cycles the Neulasta treatment seems to trigger a lot of aches, a low grade (1 degree) fever, sniffles, head congestion, interrupted sleep, and chills. The second week I had great difficulty going beyond the bed and sofa.

    Is this experience typical and do things level out? I have started to pay close attention to vitamins and nutrition. I would love to be taking Tylenol for the headache, but have been warned not to do so because it might cover up more serious issues. Any comments or suggestions to help me get through this would be appreciated! I tried to find any old threads which might shed light on this, but was not able.
    Last edited by jwessel; 06-24-2019 at 04:27 PM.

  2. #2
    Super Moderator Top User po18guy's Avatar
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    Welcome! CHOP you say. For which type/sub-type is this being administered? I ask for a valid reason.

    Now, as to the regimen itself, the results are indeed cumulative. .You must balance everything from diagnosis onward against what the cancer will do if not stopped. That re-sets your perspective, but malignancy is a life-changer. Everything that you are experiencing, and much more, actually, is survivable, since you experience all of it one day at a time. I would call the nurse and ask to information on minimizing and dealing with the effects of the chemotherapy.

    Again, for perspective, I am currently on hiatus from my 20th drug, in sometihng like 12 or 13 regimens - I would have to go back and count. I am still here and although cancer and over a decade of constant treatment have taken their toll, I am still delighted to be anywhere.

    I would call the nurse and also ask for a meeting with their dietician.
    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
    Administrator Top User Kermica's Avatar
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    Hi jwessel. I am sorry to hear that you are having such a hard time with CHOP. Is there another component in the mix (Rituxan) which would change the label to R-CHOP? The reason I ask is the the R can cause flu like symptoms and lung issues in some patients. Flu like symptoms and lung issues are not reported side effects of CHOP, at least not that I could find. Fatigue, on the other hand is the most common issue reported. The only advice I would have is to listen to your body and to rest when it says "rest".

    Other issues are hair loss, constipation, nausea, vomiting and a wide variety of other, less common issues. Google CHOP side effects to get a full list if interested. I just finished 7 rounds of R-CHOP a few weeks ago and had most of those. They can be managed by being proactive with meds like anti-nausea drugs, constipation meds (careful with that as some folks also get diarrhea).

    As to the Neulasta issues, they can be minimized by taking a claritin (NOT claritin-D) starting a couple of days before your injection date. Stop taking it the day of your injection.

    Finally, (and especially if you are getting Rituxan), you should report the pulmonary issues to your care team. In a previous chemo regimen I had, I had a similar problem. I reported it and it turned out I had a pneumonia in one lung and an infection in the other. We were able to continue treatment but had to add some therapeutic meds to my normal daily intake to address the problem.

    I hope this helps and good luck to you!

    kermica
    When the world says, "Give up," Hope whispers, "Try it one more time."
    ~Author Unknown

    Age 67
    Follicular lymphoma diagnosed August 08, Stage 1
    2 cycles (20 treatments each) localized radiation to tumor sites. Remission confirmed July 09
    Restaged to Stage 3 May 2010
    Recurrence confirmed May 2010 - Watch and Wait commenced - multiple scans with minimal progression.
    Cutaneous Squamous Cell Carcinoma diagnosed September 2012. Mohs surgical excision 09/2012. Successful, clean edges all around.
    Significant progression detected in PET scan - December 2012
    Biopsy to check for transformation 1/18/2013 - negative for that but full of lymphoma, of course.
    July 2013 - Rescan due to progression shows one tumor (among many) very suspect for transformation, another biopsy 8/12/13.
    August 2013 - No evidence of transformation, 6 courses of B+R commence 8/29 due to "extensive, systemic disease".
    February 2014 - Diagnostic PET scan states: Negative PET scan. Previous noted hypermetabolic cervical, axillary, iliac and inguinal lymphadenopathy has resolved. Doctor confirms full remission.
    June 2014 - started 2 year maintenance Rituxan, 1 infusion every 3 months. Doctor confirms lump under right arm are "suspicious" for recurrent disease, deferring scans for now.
    February 2015 - Doc and I agreed to stop R maintenance as it is depressing my immune system too much.
    June 2015 - Confirm that the beast is back by physical exam, will scan in August after esophageal issues settle down so we can get a clear view.
    August 2015 - physical exam in error, PET/CT shows no evidence of disease. Remission continues well into second year!
    December 2015 - Cardiologist tells me I have plaque buildup growing at an alarming rate. Stent or bypass down the road but not yet...
    March 2016 - new tumor below the jaw so remission is over. Back to active surveillance until treatment is needed.
    June 2016 - C/T scan indicates presence of multiple lesions in iliac chain.
    August 2016 - PET/CT shows multiple areas of lymphoma as expected plus new areas of concern in bowel.
    January 2017 - C/T scan shows significant progression in cervical and inguinal lymph chains, largest tumor is impacting hearing, measures 2.1x4.6 cm. 4 to 8 cycles of R-CVP, 1x3weeks to commence 2/6/17.
    April 2017 - Mid treatment scan shows about 1/3 reduction in multiple tumors. Also shows abdominal aortic aneurysm with peripheral thrombus. Cardiologist changed meds, spoke of need for surgical repair down the road.
    September 2017 - finished 10 rounds of R-CP, V was stopped due to neuropathy in feet. No further treatment planned at this time, at least 10 tumors can be felt which seem to be growing again.
    December 2017 - Biopsy of external iliac node with SUV of 13.1 shows no transformation! However, the FL grade is now 3A instead of Gr 1-2. Will start indefinite protocol using Copanlisib, one of the new targeted therapies. I remain hopeful.
    March 2018 - Copanlisib failed, treatment stopped 3/28. New plan is to go to Dana Farber on 4/16 for case review and treatment recommendation.

    May 2018 - did not qualify for clinical trials at Dana Farber. Tumors need to get larger to be considered. On consultation w/Dr. Armand at DF and my onc, have decided to take a break from cancer treatments. Will have a biopsy of the mass in my sinus discovered in scan at DF and to get the aneurysm repaired as it has developed a potentially catastrophic penetrating ulcer. Surgery scheduled for 7/12.

    September 2018 - biopsy of mass in nose shows transformed DLBCL throughout. Assessing options for this negative development.

    October 2018 - started 6 to 8 cycles of R-CHOP. Goal is to get to full remission to open up other options.

    February/March 2019 - PET shows four hot spots following R-CHOP. referred to Dana Farber for stem cell transplant. Pre testing all good, accepted for Auto Transplant. Will begin inpatient process about April 1.

  4. #4
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    Hi and a third welcome, I had 8 cycles of r-chop and I did fined the effects cumulative with the first treatment being easy and last couple a struggle. Your flu like symptoms could be down to the Neulasta injection, it normally lasts around 7 days, my consultant actually took par in a trial when he was a junior doctor and he shared they were the side effects he encountered - flu like symptoms.

    Just to add rather than repeat, this treatment is do-able and try to exercise - walking helps and make sure you drink plenty, as for vitamins and nutrition, the first thing is to ensure you eat as some struggle, a healthy diet helps as does a diet with plenty of fibre to help counter any constipation issues that arise. If you plan to take supplements or vitamins do check with your consultant as some can counter the effects of the chemo so you should have been given a list of foods etc. to steer clear of.

    any questions just ask one of us will be around to help.

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


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

  5. #5
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    Angioimmunoblastic stage 3B was my initial diagnosis. This was done in Arizona, where my wife and I were settling in for the winter when this hit. CHOP and a stem cell transplant were recommended. We transitioned back to Ohio for treatment as my wife has better support here and our insurance is Ohio based. The Cleveland Clinic pathologists did their own workup and concluded that the biopsy sample could not definitive differentiate between an Angioimmunoblastic or a Nodal Peripheral T Cell Lymphoma with a T follicular helper cell with an immunophenotyped. Since either of these call for the CHOP protocol followed by a stem cell transplant we are proceeding down that path. Usually the Clinic does a CHOP-E, but concluded that the E was not necessary in my case.

  6. #6
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    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.

  7. #7
    Super Moderator Top User po18guy's Avatar
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    Having had AITL (and PTCL-NOS) I strongly advise you to 1) watch like a hawk for immediate and substantial, as well as continuing response to CHOP and 2) that you seek another opinion from a T-Cell specialist and no other. These are rare and aggressive lymphomas and there is no defined treatment for them, despite what doctors say. CHOP is the old school, old standby treatment for B-Cell Lymphomas and is used against T-Cell Lymphomas out of a lack of familiarity with T-Cell Lymphomas, and almost out of habit. CHOP (or CHOEP) is the usual regimen used, but that is only for lack of a specific treatment. Frankly CHOP by itself has a rather spotty record against all T-Cell Lymphomas with the sole exception of Anaplastic Large Cell Lymphoma, ALK+ sub-type.

    Now, you may very well respond well to CHOP - I most certainly hope and pray that you do - but doctor needs to have plans B, C and D at the ready, and I speak from personal experience here.

    I received CHOP+Etoposide, followed immediately by GVD (Gemcitabine, Navelbine and Doxil). I relapsed immediately anyway. Only a clinical trial - which is the suggested first line therapy! - saved my life. But, I relapsed a second time and there have been six+ drugs since then, plus an allogeneic transplant. James Cancer Center is an NCI designated comprehensive cancer center and I wpould lean toward going there. As well, here is a partial listing of known T-Cell specialists. We are in rarified air here, as these lymphomas are very rare, very difficult and mostly unknown.

    http://www.tcllfoundation.org/resour...atment-centers


    The Ohio State University Comprehensive Cancer Center
    James Cancer Hospital and Solove Research Institute
    Columbus, Ohio
    Comprehensive Cancer Center
    Raphael Pollock, M.D., Ph.D.
    Director

    650 Ackerman Road
    Columbus, Ohio 43202
    Main: (614) 293-5066
    Toll Free: 1-800-293-5066

    Case Comprehensive Cancer Center
    Case Western Reserve University
    Cleveland, Ohio
    Comprehensive Cancer Center
    Stanton L. Gerson, M.D.
    Director

    2103 Cornell Rd, 1-422
    Cleveland, Ohio 44106
    Main: (216) 368-1122


    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.

  8. #8
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    Thanks! I will watch things closely. On a positive side, my lymph nodes have disappeared after two cycles. Even the small one on the side of my neck which I have noticed for several years, but which I had been told to ignore unless it got larger. The overall information you have posted in multiple threads has been very helpful. Particularly the u tube series by the Dr. Shustov from the University of Washington. Since the frontline treatment seemed defined, CHOP and Stem Transplant, my wife and I made the decision to complete this where we are most comfortable. Particularly the transplant part. Afterwards we plan to cast a wider net. Thanks again!

  9. #9
    Super Moderator Top User po18guy's Avatar
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    Ah, you are very well advised after watching Dr. Shustov. He has saved my life at least three times since 2008. And, not that it is something to celebrate in one sense, but you have many more choices than I did. Single agent drugs as well as new combos. Please keep us updated!

  10. #10
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    Quote Originally Posted by jwessel View Post
    Thanks! I will watch things closely. On a positive side, my lymph nodes have disappeared after two cycles. Even the small one on the side of my neck which I have noticed for several years, but which I had been told to ignore unless it got larger. The overall information you have posted in multiple threads has been very helpful. Particularly the u tube series by the Dr. Shustov from the University of Washington. Since the frontline treatment seemed defined, CHOP and Stem Transplant, my wife and I made the decision to complete this where we are most comfortable. Particularly the transplant part. Afterwards we plan to cast a wider net. Thanks again!
    I am in the first week of the first cycle. I was ok for the first 6 days, but today was very hard on me. My blood pressure was so low that I could not get up from the sofa. I had also abdominal pain. Don't know how to take 5 more cycles. This is rceop regiment, similar to rchop, just with one substitution. I also have a terrible cough. Hopefully we get to the end of this.

 

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