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Thread: AITL Diet & 2nd opinions

  1. #1
    Newbie New User
    Join Date
    Mar 2019

    AITL Diet & 2nd opinions

    Hello, firstly thank you to all you wonderful people who take the time to share information and contribute to this forum. As the son of somebody who was recently diagnosed with AITL, I cannot express how valuable reading your contributions on this forum have been.

    My father, 66 years of age, was diagnosed this year with AITL after around 6 months of symptoms (weight loss, fever, night sweats, cough etc) and a series frustrating delays after multiple biopsies and administrative issues. We are now 2 cycles into chemotherapy and the more I read about this disease, the more questions I have.

    I would love to hear people's views of the following:

    - Diet: any tips for diets, foods to take or avoid? I am looking to incorporate healthy foods/herbs/spices to support his general health (e.g. tumeric, cruciferous vegetables etc).
    - Exercise: he is good general health (e.g. no drinking or smoking, still working). Was exercise beneficial for you or your family member throughout Chemo?

    Finally, I would like to hear peoples views on seeking a second opinion or reviewing the approach. We have good care in a big city in Australia, but we have also had multiple Doctors and very limited information provided and things are not particularly clear to me. I was thinking of contacting one of the leading Haematologists in our country (Miles Prince was suggested) to discuss options. Do these experts even offer a service of reviewing scans/tests/treatment plans etc.

    Thanks in advance for your consideration.

  2. #2
    Moderator Top User
    Join Date
    Mar 2010
    Hi and welcome to the site though sorry to read about your dad's diagnosis and experience, which is not unusual when it comes to getting a blood cancer diagnosis. I cannot offer much advice re a second opinion in Australia but I cannot see what harm it would do to contact one of the top consultants and have a discussion. you could contact lymphoma Australia and seek their advice https://www.lymphoma.org.au
    re diet the is lots written about supplements and health benefits of various food stuffs, the best advice is to follow a varied, healthy and balanced diet using as much fresh produce as possible and always check with his consultant before introducing and supplements or the like as some are know to counter the effect of some of the drugs used in treating blood cancers. Exercise has been shown through studies to be beneficial especially walking, fatigue can become an issue but walking can help manage this too.

    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.

  3. #3
    Experienced User
    Join Date
    Oct 2013
    I am currently following a ketogenic diet (ultra low carb, high fat, moderate protein) there is some evidence to suggest that this may help with some cancers.

    either way it is helping me lose weight in conjunction with exercise. I would be wary of any pills, potions or "magic bullets" that anyone tries to sell you.
    Age = 44
    Stage 3 follicular NHL & Hodgkins
    Diagnosed Sept 2013
    Escalated BEACOPP + Rituximab completed 2017

  4. #4
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Sorry to hear of this. As in all lymphomas, but particularly in cases of suspected T-Cell lymphoma, a second opinion on both diagnosis and treatment almost mandatory. If you are in the US, such a second opinion is best sought at a National Cancer Institute designated comprehensive cancer center. Those with a T-Cell specialist are the best of the best. Find the nearest such center here: https://www.cancer.gov/research/nci-...r-centers/find

    Those with known T-Cell specialists may be found here: http://www.tcllfoundation.org/resour...atment-centers

    In the English-speaking world, such as Australia and Canada, there are also known T-Cell specialist

    What does dad want to do about all of this? It is very natural for us to become active and seek the best for our loved ones, but we must ultimately respect their decisions. As to any sort of "cancer diet", on a practical level, no such thing exists. There are times during treatment in which whatever will go down and stay down is the perfect diet. If a food seemed palatable to me, I ate it before my taste changed. There were times when protein chocolate milk shakes keep me going.
    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.

  5. #5
    I'm not sure any particular diet helps as long as it is balanced. I at a very alkaline diet but it was necessary because of the way my kidneys responded to my chemo. I would add though that it is very important to stay well hydrated. to me it really changed how I was feeling if I was really well hydrated.
    Female ,age 70, Diagnosed Jan 2010
    Primary CNS DLBCNHL
    Treatment every 6 weeks with High dose MTX and Rituxan for 9 months.
    Tumors shrunk and one was gone in 4 months and the larger one left some brain damage but has not become active as shown on MRI since Aug 2010.
    Since 2012 monthly Rituxan
    High Dose MTX and MRI every 4 months.
    June 6, 2014 NED
    No more chemo 6/2014

  6. #6
    Senior User
    Join Date
    Jan 2015
    Welcome to the forum. You will find a lot of support here - info about treatments, latest drug therapies, etc. plus emotional support. My brother was diagnosed at 56 and it also took 6 months to finally get the diagnosis made. So frustrating, right?! He went through chemo with his first doctor, then an autologous transplant - but it was during the visit where we sought a second opinion that he was given real hope. Not only because the doctor was a T cell specialist in NY, but also because he told him that there were so many options now to explore. My brother moved to NY eventually for about a year to be close to this doctor, did a trial, and eventually had a allogenic transplant from a young male donor. And is doing really well today. - 4 years after diagnosis. He is building his dream home, he lived to see both daughters married, and is awaiting his first grandchild this fall. So definitely seek a second opinion from a T cell specialist - the best one in Australia if you can. It was not hard for us to get an appt. pretty quickly - the doctor did look at his records ahead of time and stayed in contact by phone till he could take the train to NY. Good luck to your father and let us know how he progresses with his treatment.

  7. #7
    Experienced User
    Join Date
    Apr 2019
    I am 63 years and was diagnosed 3 months ago. Just 3 cycles into chemo so I am experiencing only the early symptoms. Some taste changes were immediate - the almond butter I used for breakfast with coffee was immediately off putting. I replaced this with a cream cheese and orange marmalade spread. It seems like the taste for acidic foods, to some degree sweets, chocolate, and soothing foods like yogurt or cream cheese continued to be positive. Most savory tastes became bland. Acidic and soothing toppings became useful. Ketchup, Mayo and Honey are your friends! Cookies became unappealing. Third cycle I began suffering from a chemo sore throat which started to be extremely painful. My wife came across Manuka honey from NZ. A warm drink of this with cinnamon has been an almost immediate cure. If Vincristine is part of the chemo cocktail it can create a stumbling gait which I refer to as the chemo zombie walk. Walking helps address this. The Dana Farber Cancer Institute web site has been the best nutritional source we have come across if you want more than "eat whatever tastes good and keeps your weight up".


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