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Thread: MyMDA experience

  1. #1
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    MyMDA experience

    Well I have been lurking in the weeds so this is a coming out of sorts for me. To begin I am unfamiliar with how to add a signature block that explains the disease and treatment experience to the present so if anyone would give me guidance on that I will add that to my name. .
    But as a quick and dirty explanation I am a70 year old woman with AITL. I have received CHOP in preparation for autologous stems cell transplant. I am in Houston st MD ANDERSON. I have gone through all the prep testing. Spent 6 days in patient receiving chemo and now as an outpatient I am 5 days into the neuperon shots. Today my counts are down there and I received my first platelet infusion.
    I think it is helpful to share our experience and I have been grateful to 'David 'who in a clear and reasonable manner shared his observation during his recent allo stem cell transport in Utah. David I hope you are recovering and thank you for your insight.
    I will post as I pass sigficant milestones.
    I am very grateful to have my sister and husband as caregivers. Without them I would be unable to take this on..I appreciate all advice and suggestions from you experienced fellow travelers out there.
    Maisiegay.

  2. #2
    Newbie Top User BobInBonita's Avatar
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    Welcome to the Forum. Most of us have lurked before diving in, so don't feel bad. You're already ahead of me - I think I had posted about 15 times before I realized how handy having a signature was. I really helps others to appreciate where you are. Here's a little guidance - hope it helps.

    • At the top of your screen, you will see a box labeled "settings". Click on it and it will bring up all sorts of handy stuff, including the signature block.
    • On the left side of your new screen there will be a section with settings. In that block is an "edit signature" box. Click that.
    • Two new boxes appear, labeled "Preview" and "Edit Signature"
    • TYpe your information in the "Edit Signature" section. THere is a limit on signature size, so try to be concise. As treatment goes on, you'll want to add more. Having a signature that's too long makes reading through posts more difficult.
    • At the bottom of the "Edit signature" box is a preview button and a save button. The preview will let you see exactly how it will look. The Save button is most important - If you go away from the settings page without hitting the save button, you will lose your work and have to start over.


    Best of luck to you and your transplant,
    Bob
    7/12 DX stage 3 pan can (adenocarcinoma) @ 65 - borderline resectable
    8/12 - 10/12 Chemo (GTX) & Stereotactic Radiation
    12/12 Whipple - R0 margins, 2/29 nodes pos.
    1/13 - 5/16 Vaccine clinical trial - randomized to control group - vaccine showed no benefit
    2/13 - 8/13 Gemzar for 6 months
    Quarterly scans - no evidence of disease to 10/14 - spot on lung being watched - possible infection 2 months on antibiotics
    3/15 - spot larger - probable met - surgery planned
    4/15 - PET prior to surg - recurrence & lung mets - Surgery cancelled - EUS w/ FNA showed adenocarcinoma - Stage 4
    5/15 - 9/15 Folfirinox @ reduced dosage - Stopped treatment after 11 infusions due to neuropathy
    10/15 - 8/16 maintenance 5-fu every other week
    8/16 - stable disease on both CT and PET/CT - chemo holiday while other treatments explored
    9/16 - lung biopsy confirms pan can met,
    10/16 -NanoKnife to pancreatic bed -PET after Nano showed new met in hilar lymph nodes - SBRT to both lung & lymph
    4/17 - PET/CT showed significant disease progression, multiple lung mets, pancreatic bed tumor has grown
    5/17 - Started hospice care - striving for acceptance

    Stay busy and live life to the best of your ability.

  3. #3
    Super Moderator Top User po18guy's Avatar
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    Welcome! The primary enemy is infection. That is the second cause of mortality after the transplant itself, and it is far more under our control. The preparation is the difficult part before transplant. The transplant itself is anticlimactic, as it amounts to little more than just another transfusion of pale blood stem cells. You may reasonably expect to develop a neutropenic fever sometime after the transplant, and will need transfusions for a time. 1-2 weeks will elapse before you have any white blood cells, and once they reach a certain level for 2-3 days consistently, and with no other complications, you are in pretty good shape. I was in-patient once I developed the fever and that was honestly the worst time of the entire process.

    Clean and sanitize everything. Wear a mask - I have worn one for a year now, and had zero infections until I slacked off a bit near the one-year mark. Develop a keen ear for coughs and sneezing, as those are unwitting enemies. Keep hand sanitizer with you everywhere except the shower. Of the three varieties of allogeneic transplants (Myeloablative, moderate intensity and mini-allo), the last two have a better survival curve, as you are left with a bit of your old immune system to fight infection. Enough for now. Let us know how things are going and ask away with any questions at all.
    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.

  4. #4
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    A quick note before I go to sleep. Today was my first day of apheresis. I will have blood checked in early am to see how I did. Another day another step. On a personnel note, my 12 yr old grandson and team mates awoke to the tragic news that one of their own and his dad will slaughtered in the Nice massacre
    Prayers please.

  5. #5
    Senior User Kimv's Avatar
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    HEllo Maisiegay and welcome to the forum.
    It is so very difficult kto hear about all of the terrorist attacks going on in the world. France seems to really have gotten hit hard as of late. I am sorry to hear about your grandson and his dad. It's a pill that is very hard to swallow. I am sending thoughts and prayers your way.
    On the other hand...congratulations on your apherisis. I hope they got everything they needed in one sitting but sometimes it can take longer. I was lucky. I was so cold It felt like I was in the great artic at a snowball contest. It took forever to get me warm. I hope things are going well and that suffering is kept to a minimum.....after all, you are a warrior now!
    I had the auto sct and am almost 3 months out. I have some residual fatigue, nausea, and diahreah but I keep busy and plan on going back to work in October. BEst of luck to you. Please let me know if I can answer questions but I often refer to Po because his expertise in this area far exceeds mine!
    KIm
    Last edited by Kimv; 07-16-2016 at 01:59 PM. Reason: Addition
    Oct. 27, 2015 diagnosed with angioimmunoblastic T cell lymphoma.
    December 2016 began choep chemotherapy-6 treatments 21 days apart.
    February 24 scan showed no evidence of disease!
    Continue choep chemotherapy treatments.
    APril 2016 returned to Stanford for high dose Cytoxan, removal of port, and insertion of Hicckman catheter.
    Neupogen injections daily to increase white blood cell counts.
    MAy 5, 2016 Apherisis.
    MAy 21, 2016 HIgh dose chemotherapy VP 16.
    MAy 24, 2016 High dose chemotherapy Cytoxan.
    MAy 26, 2016 Autologous Stem cell transplant.
    JUly 27, 2016 Scan shows no evidence of disease. Still In remission!
    October 31, 2016 Scan shows no evidence of disease...NED again!
    April 1, 2017 Still NED!

    love strong....live long❤️💜💚💛💙

  6. #6
    Senior User
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    Jan 2015
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    My grandson is a baseball player too - age 10 - and I know how close the baseball community is here in VA and I know it is there too. So I can understand completely how much they are hurting to lose their teammate and his dad. I have seen the pictures on the news of them. A lot of love there. Good luck on your transplant - and welcome to the forum.

  7. #7
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    Thanks for the words of support. I'm at day 7 post transplant. Whites are zero. I am receiving neutrapon and waiting for my cells to get busy. Side effects of the chemo are mucousitis sp.and GI issue
    Colon inflammation .all very painful and yucky .bless my care giver

  8. #8
    Senior User Kimv's Avatar
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    I can relate. ANd yes...god bless the nurses and the CNAs. HOpe the mucositis and digestive issues are short lived and that you are LONG LIVING! SEnding big hugs your way. Kim
    Oct. 27, 2015 diagnosed with angioimmunoblastic T cell lymphoma.
    December 2016 began choep chemotherapy-6 treatments 21 days apart.
    February 24 scan showed no evidence of disease!
    Continue choep chemotherapy treatments.
    APril 2016 returned to Stanford for high dose Cytoxan, removal of port, and insertion of Hicckman catheter.
    Neupogen injections daily to increase white blood cell counts.
    MAy 5, 2016 Apherisis.
    MAy 21, 2016 HIgh dose chemotherapy VP 16.
    MAy 24, 2016 High dose chemotherapy Cytoxan.
    MAy 26, 2016 Autologous Stem cell transplant.
    JUly 27, 2016 Scan shows no evidence of disease. Still In remission!
    October 31, 2016 Scan shows no evidence of disease...NED again!
    April 1, 2017 Still NED!

    love strong....live long❤️💜💚💛💙

  9. #9
    Hey Maisie,

    You probably have another 5 days or so before you start to see your counts go up. Am very sorry about the mucositis and the GI issue. I somehow dodged the mucositis both times I had transplants, and nothing like a colon inflammation. So I cannot be much help there. Best advice I can give is to get up and move about as much as you can....I think that helps. And get some calories. Important to keep your strength up. Even just smoothies with some added protein powder can help.

    anyway, hang in there.....this will get better soon......know we are thinking about you and cheering hard for you....please keep us posted....

    Prayers and best wishes, finest Karma, lots of hugs

    David
    67 yrs old
    March 6, 2012: Diagnosed Anaplastic Large (T-) Cell Lymphoma, Stage 1 (ALK-)
    3 rounds of CHOP unsuccessful.
    Beginning mid-June, 2012, received 6 cycles of Brentuximab at Huntsman Cancer Institute, University of Utah. Autologous bone marrow transplant in November of 2012.
    17 radiation treatments for "consolidation" purposes between Dec. 26 and Jan.17.
    100 day post BMT check-up (2/26/13): NED. Pet scan on 7/10/13: Still NED.
    One year post transplant check-up: Still fine; NED.
    18month post-translant scans, etc. All fine, save a bit of arthritis.
    11/14/14: 24 month post transplant check-up--still NED.
    5/15/15: No NED this time. Relapse confirmed/ started every 3 week brentuximab
    Allo transplant in Feb 2016.
    100 day post transplant scans in June 2016 fine.
    3 yr. post SCT check up: all fine, no issues.

 

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