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Thread: Testicular cancer

  1. #1
    Newbie New User
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    May 2015

    Testicular cancer

    My boyfriend is a 2 time survivor most recently he finished chemo in December. He has been cancer free since then.
    I have some questions for guys out there or wife's gfs mothers whoever can help me out. It's a touchy subject for my boyfriend and I don't like bringing it upto him all the time.

    Since the chemo he has had a very hard time with eating raw veggies...it's not that he doesn't want to eat them it's the aftermath of eating them. He complains about his stomach being upset about a day after he's eaten a salad or a plate of veggies and he's constantly on the toilet. So I feel horrible feeding him raw veggies so I've cooked them and he doesn't seem to have much of an issue with cooked veg. But he loves salads...loves eating raw veggies...has anyone else had this same problem? What did you do? What should I be doing ?
    Thanks in advance

  2. #2
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Sorry to welcome you here under these circumstances. If cooked vegetables are fine, then he may have to settle for cooked. Has he had recent blood work done? If so, how was his liver function?
    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 ChemoMan's Avatar
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    Jun 2008
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    Ughh raw veggies ! No wonder he feels sick !

    I don't know what you were thinking in giving raw veggies. Your BFs immune system took a huge hit with the chemo and then you feed him raw veggies. The risk of serious infection by eating raw veggies is ....death. Don't do it again.

    It takes a while to recover from chemo and as far as appetite goes this could take years before it gets to where it was. In the meantime don't push him and please ask him what he wants to eat. Do stop making your mind up for him and let him negotiate his own recovery on his terms.

    I wish you both good luck
    Age 62
    Diffuse Large B cell Lymphoma
    Stage 2a Bulky presentation
    Finished six cycles of R chop 21 26th May 2008
    Officially in remission 9th July 2008
    Remission reconfirmed 1st October 2008
    Remission reconfirmed 17th June 2009
    Remission reconfirmed 7th June 2010
    Remission reconfirmed 6th July 2011

    NED AND DECLARED CURED on the 2/01/2013

    No more scheduled visits to the Prof

    Still alive in 2019 !

    RULE NUMBER 1.....Don't Panic
    RULE NUMBER 2..... Don't forget rule Number 1

    Great moments often catch us unaware-beautifully wrapped in what others may consider a small one.

    I may not have gone where I intended to go,
    but I think I have ended up where I needed to be.

  4. #4
    Newbie New User
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    May 2015
    Chemoman, thanks for making me feel worse about this situation. I didn't have any doctors telling me what to feed him. Nobody said anything about raw veggies. They said unwashed veggies would carry bacteria that could potentially harm him. So I soaked all veggies in an organic wash for at least an hour then scrubbed them before giving him anything. And when I say raw veggies I mostly mean salads so forgive me for trying to keep a healthy lifestyle like th doctors had told me to.
    At no point do i make up his mind for him...i ask every single day what he wants to eat. And if i make it and he doesnt like it i make him something else. You really did not need to make me feel horrible for asking for help...please don't comment if you're going to make me feel like a shitty girlfriend.
    Last edited by heismyhero; 05-27-2015 at 06:52 PM.

  5. #5
    Newbie New User
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    May 2015
    Po18guy I've been sticking to cooking all the veggies now but he keeps wanting salad and I don't say no obiously but we both know the outcome of him having a salad he's sick for 2 days or more. He's a grown man I can't tell him what to eat and what not to eat he will just do it anyways
    But he went to the drs today and they gave him some pills to take every morning that are supposed to help with the acid in his stomach. They said they think because of the chemo his stomach isn't producing the right amount of acid to break the raw salads and veggies down and that's why he's having issues so fingers crossed they help
    And the doctor also told him not to change the way he was eating and after a week to add more veggies and see what happens


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