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Thread: Allo transplant

  1. #11
    Administrator Top User Didee's Avatar
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    Quote Originally Posted by po18guy View Post
    July 17th would have been simply too coincidental...

    p.s. when I asked for the transplant forum to be created, it was neither invitation nor expectation. However, as we know...

    That crossed my mind too since I relapsed lol. So very pleased all 3 admins agreed on your baby being created.

    At least my sister won't have to hold my hair back while I am spewing on my birthday as I don't have any due to clipping it for sweating reasons. Just a bugger that alcohol won't be consumed but don't like getting to spewing stage with that either..so I don't. Too old for that crap but don't mind a few drinks. Am having one or half a one with a meal now and then.
    Aussie, age 61
    1987 CIN 111. Cervix lasered, no further problems.

    Years of pain, bleeding, women's plumbing problems. TV ultrasound, tests, eventual hysterectomy 2007, fibroids in lining of Uterus.

    Dx Peripheral T Cell Lymphoma stage 2B bulky, aggressive Dec/09.
    6 chop14 and Neulasta.
    Clean PET April/10, 18 rads 36gy mop up. All done May 2010
    Iffy scan Nov. 2011. Scan Feb 2012 .still in remission.Still NED Nov 2012.
    Discharged Nov 2014.

    May/2012. U/sound, thyroid scan, FNB. Benign adenoma.

    Relapse Apr 2016. AITL. Some chemos then on to allo transplant. Onc says long remission was good. Still very fixable.

    SCT Aug 2016

  2. #12
    Senior User Kimv's Avatar
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    JUst remember to stay ahead of the spewing game. Ask for zofran, Ativan or anything else they have as soon as you feel queasy. I know it sometimes comes on like a bullet but don't be afraid to ask.
    Happy to hear you celebrated your birthday early with pizza movies etc. take the JOY whenever you can grab it!! A love your attitude....I will have a toast to you on the 17th! Kill the beast!!❤️ 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❤️💜💚💛💙

  3. #13
    Moderator Top User
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    Dee, I remember reading last year the were some new alternatives to apprepitant, sorry cannot remember the names but wonder if any of them may be of help, given they block the message from the receptor that triggers you puking

    hope it goes as smoothly as it can and you get a quick release.
    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.

  4. #14
    Administrator Top User lisa1962's Avatar
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    As always, thinking of you Di. You are one tough cookie. I will be traveling on the 20th but will be checking up for updates. Sending the biggest virtual hug lady....

  5. #15
    Administrator Top User Didee's Avatar
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    Finished the 4 tests, have tomorrow off then see onc thurs then home fri. Having a lovely time with my water and ozzy icon views from 24th floor
    Aussie, age 61
    1987 CIN 111. Cervix lasered, no further problems.

    Years of pain, bleeding, women's plumbing problems. TV ultrasound, tests, eventual hysterectomy 2007, fibroids in lining of Uterus.

    Dx Peripheral T Cell Lymphoma stage 2B bulky, aggressive Dec/09.
    6 chop14 and Neulasta.
    Clean PET April/10, 18 rads 36gy mop up. All done May 2010
    Iffy scan Nov. 2011. Scan Feb 2012 .still in remission.Still NED Nov 2012.
    Discharged Nov 2014.

    May/2012. U/sound, thyroid scan, FNB. Benign adenoma.

    Relapse Apr 2016. AITL. Some chemos then on to allo transplant. Onc says long remission was good. Still very fixable.

    SCT Aug 2016

  6. #16
    Moderator Top User jorola's Avatar
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    Always great to hear from you! enjoy the view. I will be away as you know on the 17th so happy birthday and I will be looking forward to hearing how well everything went when I get back on the 20th!

    Birthday hugs Oz lady !!!!!!!!!!
    Wife to husband with squamous lung cancer stage 3 b
    dx - April 20/14
    tx started May 20/14 - radiation and chemo
    June 23 - chemo finished
    June 24 - tumor 1/3 the original size
    July 4 - radiation finished
    July 8 - PET scan shows tumor almost gone, lymph nodes back to normal
    Married July 19/14
    Sept 9/14 - repeat can shows tumor continues to shrink more, no new spots. New coughing and pain due to chest infection or side effect of radiation.
    Sept 19/14 - not infection but pneumonitis, place on dex for 4 weeks
    Oct 22/14 - now off of dex and facing even more symptoms of withdrawal
    Dec 16/14 - pretty much nothing left but a scar
    April 7/15 - ditto scan and screw you stats
    Oct 6/15 - more scarring but still cancer still gone
    Feb 2016 -scan the same
    Aug 2016 - more of the same
    Aug 2017 - and ditto
    Aug 2018 - 4 yrs NED

  7. #17
    Administrator Top User Didee's Avatar
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    Binoculars. I am officially a voyeur or I prefer to say people watcher.
    When in st vincents for the 5 weeks in apr, may, i thought a pair of them would be fun. 9th floor, most rooms city views and, shall we say, the passing people who populate this armpit area of sydney.

    Watching people trying to back into a few free angle parking spots is fun for the whole family.

    Sitting up here in my lofty 24th floor room watching circular quay.....this is where all the ferries are, coming in and out. Rather relaxing, reminds me of watching the slow graceful toing and froing of fish in a fish tank so we got a pair of cheap binoculars and i am lovin it. Watching them, the ants..i mean people and the watercraft out there.
    A big cruise ship due to dock overnight too.

    Hip is a bit sore from BMB but that is normal.

    Bit on edge. Onc appointment tomorrow and final yay or nay on SCT. I know one part of lung function wasn,t brilliant...the breathing out as hard as you can bit. Echo was normal. Distraction, distraction distraction.......oh look, some sail boats are out, way in the distance, better have a look at them.
    Last edited by Didee; 07-06-2016 at 06:34 AM.
    Aussie, age 61
    1987 CIN 111. Cervix lasered, no further problems.

    Years of pain, bleeding, women's plumbing problems. TV ultrasound, tests, eventual hysterectomy 2007, fibroids in lining of Uterus.

    Dx Peripheral T Cell Lymphoma stage 2B bulky, aggressive Dec/09.
    6 chop14 and Neulasta.
    Clean PET April/10, 18 rads 36gy mop up. All done May 2010
    Iffy scan Nov. 2011. Scan Feb 2012 .still in remission.Still NED Nov 2012.
    Discharged Nov 2014.

    May/2012. U/sound, thyroid scan, FNB. Benign adenoma.

    Relapse Apr 2016. AITL. Some chemos then on to allo transplant. Onc says long remission was good. Still very fixable.

    SCT Aug 2016

  8. #18
    Super Moderator Top User po18guy's Avatar
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    A people watcher looks out of windows. A voyeur looks in.
    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.

  9. #19
    Administrator Top User Didee's Avatar
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    Oh, well, there ARE other high rise hotels next to me. I have checked out their balconies as i dont have one.
    Aussie, age 61
    1987 CIN 111. Cervix lasered, no further problems.

    Years of pain, bleeding, women's plumbing problems. TV ultrasound, tests, eventual hysterectomy 2007, fibroids in lining of Uterus.

    Dx Peripheral T Cell Lymphoma stage 2B bulky, aggressive Dec/09.
    6 chop14 and Neulasta.
    Clean PET April/10, 18 rads 36gy mop up. All done May 2010
    Iffy scan Nov. 2011. Scan Feb 2012 .still in remission.Still NED Nov 2012.
    Discharged Nov 2014.

    May/2012. U/sound, thyroid scan, FNB. Benign adenoma.

    Relapse Apr 2016. AITL. Some chemos then on to allo transplant. Onc says long remission was good. Still very fixable.

    SCT Aug 2016

  10. #20
    Senior User Kimv's Avatar
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    Dec 2015
    Posts
    422
    Glad to hear you are relaxing and enjoying the view. We won't start worrying about you until you start dropping things like water balloons and marbles out of your window!
    Best wishes today with the Doctor. A clearance for sct would be a perfect end to this beautiful day.....well it's beautiful here in Northern California......you are having your winter season aren't you???? Anyway, I await your report with baited breath. Sending good juju and much love on this day and always. 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❤️💜💚💛💙

 

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