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Thread: Hoping for options after relapse of AITL.

  1. #11
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    After two rounds of brentuximab I'm having some pain in my large muscle. Thighs. Gluts. Arms shoulder to wrist. It seems to be worse at night. Like restless leg syndrome. Walking and moving doesn't hurt. Sitting and laying I just ache. This just started a day ago. Into day 15 of round 2. ibuprofen helps. Vicodin at night so I can sleep. Bought some herbal stuff for restless leg and it helps and helps quickly. You dissolve tabs under tongue. My pharmacist is making me a magnesium gel. Something I read about but can't find. He had a recipe and said he'll make some to try. I prefer to not take drugs but will if I have to! But on the bright side the one lymph node I could feel in groin is gone. PET on Wednesday to see how it's working.

  2. #12
    Super Moderator Top User po18guy's Avatar
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    Good that there is a palpable response. Still plenty of other drugs to use if it is less than hoped for. Have they performed genomic profiling on your tumor cells?

  3. #13
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    Bruise like spots after Brentuximab for AITL

    I have AITL. Treated with CHOP. Remission Almost two years. Relapse treated with Brentuximab. Successful???? Unclear at this time. I had a PET after six treatments and it wasnít clear. I had a virus at the time and there may be some noise in the PET. Anyway. New PET will be Dec 31. I feel great. Problem of the moment. I have these bruise like spots. One behind right knee. Size of a quarter. Other spot on my rear end. At tailbone. Started about size of silver dollar. Now moving south a bit. I go to derm on Monday. I have heard of rashes with AITL but never spots like this. I had them during last PET and they arenít hot. My doc has no idea. Never seen it before. We waited a little over month for derm appt to see if maybe it was reaction to treatment. But it hasnít gone away. Not much worse. Doesnít itch. Doesnít hurt. Just annoying. Anybody else ever experience this?

  4. #14
    Super Moderator Top User po18guy's Avatar
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    Sorry to hear this. Since you are in active treatment, you must have a certain amount of active disease. You know that AITL is absolutely unique among cancers and even among lymphomas. The "cytokine storm" that it triggers can cause every manner of autoimmune malfunction known - and a few which are not known. How are your blood numbers? If your platelets are low, bruising will appear. How's your blood pressure?

    Now, I know of no one who would treat AITL with CHOP, or with Adcetris. UNLESS the tumor cells have been recently examined and found to express a substantial amount of CD30 on their surfaces. Unless your variation of AITL expresses CD30, Adcetris is a potentially dangerous waste of time and money, IMO.

    Were Romidepsin, Belinostat, Poteligeo (Mogamulizumab) or Pralatrexate discussed with you?

    EDIT: Adcetris has numerous side effects. One of them is thrombocytopenia, or low platelets, which can easily cause bleeding problems. The maker advises to speak with your doctor if you experience any of the following:

    Tell your doctor if you have any serious side effects, even if they occur several months after you receive Adcetris, or after your treatment with Adcetris ends:

    • weakness, burning pain, or loss of feeling in your arms or legs;
    • chills, body aches, flu symptoms, sores in your mouth and throat;
    • pale skin, lightheadedness, shortness of breath, rapid heart rate, trouble concentrating;
    • easy bruising, unusual bleeding, purple or red pinpoint spots under your skin;
    • lower back pain, blood in your urine;
    • pain or burning when you urinate, urinating less than usual or not at all;
    • numbness or tingling around your mouth;
    • muscle weakness, tightness, or contraction, overactive reflexes;
    • fast or slow heart rate, weak pulse, confusion, fainting; or
    • severe skin reaction -- fever, sore throat, swelling in your face or tongue, burning in your eyes, skin pain, followed by a red or purple skin rash that spreads (especially in the face or upper body) and causes blistering and peeling.
    Last edited by po18guy; 11-09-2018 at 08:07 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.

  5. #15
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    After relapse the lymph node they removed was prominent CD30. Thatís why we went with Brentuximab. All the others you mention have been discussed too. My blood is fine. Has been all along through treatment. Blood pressure is great. I guess I find out Monday what this is. My last treatment with brentuximab was August 21. As I said I feel great. I have no lymph nodes I can feel. Neck and groin are my usual spots that appear.

  6. #16
    Super Moderator Top User po18guy's Avatar
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    The CD30 is interesting. Normally, Anaplastic Large Cell Lymphoma (ALCL) is CD30+. I do not have the specific immunophenotypes of the four known sub-types of AITL at hand, but there may be one or more of them that do express CD30. Technically, that is good, as it gave you another treatment option in Adcetris.

    Did you have any extra-nodal sites? Am just wondering if a CT series will be done along with the PET. If so, any former tumor sites can be reviewed on both CT and PET. Please keep us updated on things!

    p.s. I merged this with your first thread so as to keep all responses under one roof. It is easier to manage and track replies that way.

  7. #17
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    Results of skin biopsy on my tailbone came back positive for AITL. They didnít biopsy the one behind my knee. They assumed the same as tailbone. The rash on my elbows are a benign reaction to something. Will resolve itself. So weíre moving up the PET from Dec 31 to Dec 3. Dermatologist was shocked my ďbruisesĒ were lymphoma. He said in his years of practice he has never seen lymphoma present like this. So onward I go! Iím still feeling good though!

  8. #18
    Super Moderator Top User po18guy's Avatar
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    Well, between Romidepsin and Adcetris, one of the two should - perhaps in combination with some form of topical or light therapy - do the trick for you. Have you visited the cutaneous Lymphoma Foundation website? A lot of information and resources there.

    https://www.clfoundation.org/

  9. #19
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    I had my PET last week and the results are in. Just a few active nodes. Groin and lungs. Plus my skin lesions. Doctor want me to do a trial of cerdulatinib. Has anybody been on that trial? Itís an oral drug and it has shown results for AITL. I always thought trials are the last option on the board. I guess that isnít true because we havenít even tried several like Romi etc. It seems like Brentuximab worked to a point. Took care of all the nodes in my neck and armpits. Iím reading thru the 35 pages of consent regarding this trial. I have so many questions! Mainly though looking for some real life experience from somebody whoís done it. I have one guy in my Facebook group that tried it. He ended up septic after the drug knocked out his immune system. After recovery it does seem the drug worked for him. But obviously they didnít continue. I know everybody reacts different to treatment but that is the only personal experience I know so far and it scares me!

  10. #20
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    I haven't taken that particular drug, but I am currently in two medical trials, one for lymphoma and the other for an experimental drug for an eye condition. It's a common myth that trials are the last resort for those who have tried every mainstream option and are grasping for one last straw.

    In fact, trials are set up so that you should do no worse than the mainstream drugs currently available. In some cases, if you don't appear to be having a proper response, you are removed from the trial and move back to a more commonly used drug. Think of it this way, virtually all of the current drugs or drug combinations now successfully used for cancer once went through the trial process.

    It's sad, but there is very low participation in trials - only about 3% of patients sign up for them. As a result, medical research is slowed down and potentially miraculous drugs may never reach market without the testing required.

    In my case, the lymphoma trial I enrolled in knocked my cancer back completely and I've been in remission for almost 8 years. The trial for my eye may or may not have done much, and I'm disappointed that my vision didn't return to the degree that I'd hoped it would Sometimes you win, sometimes you don't.

    Be sure to write down your questions as they reveal themselves to you. Before starting treatment you'll have a meeting with the pharmacist or other major trial manager to discuss the drugs, possible side effects, etc. That's a great time to just map out some time to get your questions answered.
    DX - 5/2010 Grade 1, Stage 4 fNHL - w/spleen and 47% bone marrow involvement
    TX - 6/2010-12/2010: SWOG S0801- R-CHOP + Bexxar + Rituxan (4 yrs/quarterly)
    Restaged (post Bexxar) - PCR-Neg/NED :2/2011
    Rituxan maintenance ended 3/2015
    1/2018: Remission continues (>7 years) Down to one checkup/year!

 

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