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Thread: My dad is struggling with his diagnosis

  1. #21
    Hello everyone!

    Today was the day before round two of chemo. I was a bit shocked to see my dad today. His hair is already starting to fall. Itís so weird and he looks so much older and fragile.

    I was a little mad that they didnít seem to be taking the infection risk seriously enough. My brother (2) was around with a runny nose. I put a hospital mask I brought (I got them a whole box) on him but that didnít last long. My sister, 7, also has no respect for boundaries and is all up him. I snapped and told her if she got near him without a mask on he was going to get sick and die. She was shocked ďDaddy is gonna die?Ē I felt immediately terrible but also I hope it scares her a bit.

    He says he feels the tumor ďgrowingĒ or stop shrinking, I think, because itís harder to eat again. He said these last few days have been the worst. Heís also been very sensitive to smells, which have been making him nauseated.

    My question is: anyone have any idea on how to keep him healthy during chemo, especially with little kids at home? I am honestly concerned.

    Thank you!

  2. #22
    Experienced User
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    Quote Originally Posted by mydadisafighter View Post
    My question is: anyone have any idea on how to keep him healthy during chemo, especially with little kids at home? I am honestly concerned.

    Thank you!
    While my wife was being treated we had a 1 year old and a 6 year old.
    Luckuly my parents in law could move here so we immediatly took our younger one out of nursery...that is a virus mine.
    The older one we were constatly on top of her to the small things we could control....dress apropriatly ( was winter so needed to be warm ) and always washed the hands as soon as he got home.

    Eventually i was the one getting an episode of flu ( from guys at work ) so wore a mask and splet on a separate room.

    I guess there is always a risk specially with small kids, try to sensibly responsible the older one and always keep a few baby wipes and tissues for the younger.

    Smells/taste/grumpyness also affected my wife during the whole threatment. I suspect 1 cycle is too soon to assume its not working. Keep it up and hope 2nd one went ok.
    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...

  3. #23
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    Quote Originally Posted by mydadisafighter View Post
    I put a hospital mask I brought (I got them a whole box) on him but that didn’t last long. My sister, 7, also has no respect for boundaries and is all up him. I snapped and told her if she got near him without a mask on he was going to get sick and die.
    It was explained to us that studies have shown that masks are of limited value, as most germs are communicated from touching contaminated surfaces. It was suggested that the best value of a mask was to wear one so that other people would keep their distance out of fear of contacting something ghastly! My wife and I both got kiddie crud while we were going though our respective chemos. Not pleasant, and it took longer than normal to get over, but not the end of the world. A price we were willing to pay to spend time with the grandkids.

    The serious germs are the ones we carry around in our digestive systems, not the annoying ones outside. I would be concerned about anyone spiking a fever. With neutropenic risk, a temporary fever spike will mean at least one night in the hospital for observation.

  4. #24
    Hello everyone! Sorry I havenít been here. Things have been quite hectic (like Iíve gotten very sick and was unable to visit my dad for weeks this month) ó but the end results have mostly been positive.

    My dad had been in a once every 21 days chemo treatment (I wish I knew the drugs, but I really donít). At his fourth session PET SCAN, the lymphoma had barely reduced so they changed up the drugs and the protocol to a five days a week every 14 days ó again, I donít know the drugs, but he has chemo tomorrow so I can look. After the second 5 days a week protocol he had a really bad reaction to chemo and toxicity and had to spend a week in the hospital. Like, it was very bad.

    ON THE OTHER HAND, the lymphoma now is basically all gone ó only seven single nodules showed signs of cancer after the two treatments with this new protocol. So, this week he goes at it again, with a lower dosage (the doctor believe it will be enough to wipe the whole thing since the chemo is cumulative) for five more days.

    Then, in late November heís supposed to go for an Autotransplant. Does anyone here has experience with this? The doctor said itís his best chance to avoid recurrence and said itíll likely be an actual cure as opposed to remission. He also said that since heís his own donor, the risks are greatly decreased than if he was getting bone marrow from someone else. Still, heís apprehensive about the long hospital stay and the risk of infection ó the doctor explained he has to take all his vaccines again like babies ó which I found kind of interesting.

    Anyway, I was just wondering if anyone had good experiences with autotransplants, if the recovery process was hard and whatís been like. His doctor doesnít seem even a bit concerned which is reassuring.

    I hope everyone is well.

  5. #25
    Moderator Top User
    Join Date
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    1,350
    Hi his original treatment will have been RCHOP and his new treatment could be on elf a number of regimes, all designed to do what they have done and that's get him into remission ready for a transplant. The are a few who have been down the auto and allo transplant routes and the is a separate forum if you look towards the bottom of the list. Over the last 20 years the number of transplants have increased and they are well versed in do them, the transplant chat can be scary as they have to tell you all the bad stuff, but just remember this treatment is a life saver and they do know how to manage any side effects well. I assume he is having an auto transplant where he gets his own cells rather than those of a donor. ask any questions and someone will be able to give you a steer. Hope your well now and can get back up to speed with your dad and his treatment.
    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. #26
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Posts
    10,489
    First, it is greatly desirable to be in complete remission if possible before a transplant. Since transplant essentially kills your immune system, it is a poor time to eliminate the body's defense against the cancer. That said, the conditioning chemo for auto transplants is very high dose (3X-10X normal dosing), but only for a very short duration. The thinking is that no lymphoma cells could survive in such a chemo-dense environment.

    Auto transplants are much easier coming out of than going into. There is virtually a 100% guarantee of the transplanted/replaced cells engrafting in his marrow. There is no chance of Graft-versus-Host-Disease, as the cells are his own and will not attack any of his organs or tissues. The kicker is to get into remission in preparation for transplant. With an indolent lymphoma, it is not as critical, as any unopposed growth will be slow. With aggressive lymphomas, it is more critical, as cancer growth will be more rapid when the old immune system is killed off.

    This is still a changing environment and opinions do vary as to the best procedure. What to watch for is the lymphoma's response to the new regimen. There are yet other regimens, off-label use of current drugs and clinical trials. Honestly, all of them should be investigated.
    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.

  7. #27
    Experienced User
    Join Date
    Apr 2019
    Posts
    61
    Approaching 64 years old, I just completed an auto transplant. This past Saturday it was two weeks since I had returned home. While there may be complications, doing an auto transplant is not considered high risk. I posted my experience during the process. No one does this for kicks, but it gave me the best chance at a cure or durable remission for a few years. The better shape one is going in, the easier it is to endure.

    Very best to your dad and you as you make this decision and complete the plan of care.

  8. #28
    Quote Originally Posted by johnr View Post
    Hi his original treatment will have been RCHOP and his new treatment could be on elf a number of regimes, all designed to do what they have done and that's get him into remission ready for a transplant. The are a few who have been down the auto and allo transplant routes and the is a separate forum if you look towards the bottom of the list. Over the last 20 years the number of transplants have increased and they are well versed in do them, the transplant chat can be scary as they have to tell you all the bad stuff, but just remember this treatment is a life saver and they do know how to manage any side effects well. I assume he is having an auto transplant where he gets his own cells rather than those of a donor. ask any questions and someone will be able to give you a steer. Hope your well now and can get back up to speed with your dad and his treatment.
    Hey! Thanks! I probably should have looked what drugs he was on, but I know one of them was Cisplatin! And, yes, heíll be getting the auto transplant! They will start doing the general health tests for it as soon as he recovers from his last round of chemo, which finally ended today! Then theyíll prepare him for it! Iíll take a look in the transplant forum once we know more details about it! Thank you for the support!

  9. #29
    Quote Originally Posted by po18guy View Post
    First, it is greatly desirable to be in complete remission if possible before a transplant. Since transplant essentially kills your immune system, it is a poor time to eliminate the body's defense against the cancer. That said, the conditioning chemo for auto transplants is very high dose (3X-10X normal dosing), but only for a very short duration. The thinking is that no lymphoma cells could survive in such a chemo-dense environment.

    Auto transplants are much easier coming out of than going into. There is virtually a 100% guarantee of the transplanted/replaced cells engrafting in his marrow. There is no chance of Graft-versus-Host-Disease, as the cells are his own and will not attack any of his organs or tissues. The kicker is to get into remission in preparation for transplant. With an indolent lymphoma, it is not as critical, as any unopposed growth will be slow. With aggressive lymphomas, it is more critical, as cancer growth will be more rapid when the old immune system is killed off.

    This is still a changing environment and opinions do vary as to the best procedure. What to watch for is the lymphoma's response to the new regimen. There are yet other regimens, off-label use of current drugs and clinical trials. Honestly, all of them should be investigated.
    Hey po18! He finished his chemo treatment today ó the outpatient ones. The doctor believes this should rid him of all remaining cancer spots, so, I donít think theyíre worried there. Thank you so much for all your support through this!

  10. #30
    Quote Originally Posted by jwessel View Post
    Approaching 64 years old, I just completed an auto transplant. This past Saturday it was two weeks since I had returned home. While there may be complications, doing an auto transplant is not considered high risk. I posted my experience during the process. No one does this for kicks, but it gave me the best chance at a cure or durable remission for a few years. The better shape one is going in, the easier it is to endure.

    Very best to your dad and you as you make this decision and complete the plan of care.
    Hi there! I hope youíre doing well with your transplant! And I really hope you cab achieve the cure with it so you never have to deal with any of this again!

 

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