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Thread: Allo transplant

  1. #221
    Super Moderator Top User Baz10's Avatar
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    May 2011
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    To coin a phrase partially borrowed from Kerm
    We all miss you.
    Waiting you’re return
    Me and the better half.
    Yeah like Gary I know my place. wink,
    Bazzer
    Diagnosed stage 3 March 011
    Radical resection April 011
    Restaged 2b April 011.
    12/09 Colonoscopy clear but picked up hospital infection.
    Aorta & femoral arteries occluded.
    Clot buster drugs put me in ICU with internal bleeding. 9 blood units later they got it under control.
    Aortobifemoral surgery 5th May. yughh.
    PET scan indicates clear
    DEXA bone scan clear
    13/5 CT showed "unknown" but no concern from docs.
    Inguinal lymph nodes and severe groin pain.
    Ultrasound and MRI show no nasties. Pheww
    Groin pain and enlarged lymph nodes still there.
    October -still the same pains but under semi control.
    Additional chest CT scan ordered for 11th November prior to surgery.
    Sinus surgery done and dusted.
    July 2014 PSA at 5.10. 2months of antibiotics in case of UTI, jan 2015 PSA at 7.20, 23/08 now 8.2, current 8.1
    Prostate Cancer confirmed Gleason 3+Marginal 4.
    Active surveillance continues.
    PET CT Aug 2017 indicated lung nodule changes
    CT Guided biopsy 7/09
    November 1 Vats Wedge section pathology Glomulated previous infection
    no Cancer.

    Not all's rosy in the garden, but see following.
    Stop grumbling Baz, your still alive and kicking so far.
    Age and illness doesn't define who we are, but more what we are able to do.
    Motto
    Do what I love doing, when I can until I can't.
    and dodging bullets in the meanwhile, too many bullets at moment.

  2. #222
    Super Moderator Top User po18guy's Avatar
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    Good to hear, sis! Do they offer the Kadmon025 trial in Oz? I am consented and will be entering once I pass lung function tests. "If" available, it is an oral pill and has a 71% overall response rate. Something to think about.

  3. #223
    Administrator Top User Didee's Avatar
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    Touching every wooden surface that I can.......I think I an turning the corner. THREE WEEKS HOME (my personal best was a five week stretch) and usually by 2 weeks I am going down hill and have hospital stays, sometimes for a few months. A lot of days I feel well but still have a few wobbly, breathless, nausea ones.

    I was kinda dreading coming home...this is just a statement and not a criticism. Hubby, (farmer, works 7/7 dawn to dusk) who would drive a 2 hr round trip every second night and looks after me so well.....has just piled piles of plastic bags full of stuff on the pool table and other surfaces for the last almost 2 years, as well as totally disorganising my kitchen. To the extent that I felt I was a visitor, that it wasn.t mine. Kitchen was always clean and tidy just things in different spots.

    He would never have had the time to help me sort it.

    My wonderful Donor and sister has flown in from another state.
    She has been here a couple of weeks and leaves in a few days.

    WELLLLLLLL the lot has been sorted, keep, throw, donate. Same with my walk in wardrobe, freezers, pantries, drawers. With every job I could feel my spirits lift. Many huge bags to donate plastic containers, bric a brac etc.

    She would bring out laundry baskets of pantry or stuff for me to vet. Kitchen sorted. As I have to use the walker She has stuff I need at my sitting height.

    She has set me up for success.
    I can never ever repay her for firstly literally saving my life and now doing all this together not to mention the wonderfulness of being together.

    When we last saw each other (she had to go home to become a grandmother for the first time) I could not do a heck of a lot, it took 2 nurses to heave me up with a belt on to get on a piece of equipment to be rolled to the gym.

    Since then I have had 2 more pred increases that have sapped muscles that has undone some of the work I put in.
    When she first saw me sit to stand to get my walker and walk to the loo etc she said she nearly cried.

    I guess it is all relative, I was down as I felt I had slipped back with this latest run in with the pred, she, however reminded me how I was like a quadriplegic. Totally dependent, couldn't move. I am so improved on that and doing walks, some home physio and focusing on what I can do, not what I can't.

    I am going to miss her so much but as I said, she nhas really set me up for success and easiness for stuff I want and need to do.
    Last edited by Didee; 02-09-2018 at 06:42 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

  4. #224
    Super Moderator Top User Baz10's Avatar
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    May 2011
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    Di,
    i for one had little doubt you would do it if anyonee, it would be you.
    So pleased you’re home and this time stay home.
    Arent immediate family wonderful and irreplaceable.

    I bet hubbby is over the moon you are home.
    Take care hon
    hugs and kisses from Anne and GOB.
    Barry
    Diagnosed stage 3 March 011
    Radical resection April 011
    Restaged 2b April 011.
    12/09 Colonoscopy clear but picked up hospital infection.
    Aorta & femoral arteries occluded.
    Clot buster drugs put me in ICU with internal bleeding. 9 blood units later they got it under control.
    Aortobifemoral surgery 5th May. yughh.
    PET scan indicates clear
    DEXA bone scan clear
    13/5 CT showed "unknown" but no concern from docs.
    Inguinal lymph nodes and severe groin pain.
    Ultrasound and MRI show no nasties. Pheww
    Groin pain and enlarged lymph nodes still there.
    October -still the same pains but under semi control.
    Additional chest CT scan ordered for 11th November prior to surgery.
    Sinus surgery done and dusted.
    July 2014 PSA at 5.10. 2months of antibiotics in case of UTI, jan 2015 PSA at 7.20, 23/08 now 8.2, current 8.1
    Prostate Cancer confirmed Gleason 3+Marginal 4.
    Active surveillance continues.
    PET CT Aug 2017 indicated lung nodule changes
    CT Guided biopsy 7/09
    November 1 Vats Wedge section pathology Glomulated previous infection
    no Cancer.

    Not all's rosy in the garden, but see following.
    Stop grumbling Baz, your still alive and kicking so far.
    Age and illness doesn't define who we are, but more what we are able to do.
    Motto
    Do what I love doing, when I can until I can't.
    and dodging bullets in the meanwhile, too many bullets at moment.

  5. #225
    Moderator Top User jorola's Avatar
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    May 2014
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    1,586
    Di you amaze me always with your strength and heart to fight and win. Atta girl - keep it up. Big hugs sent your way.
    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

  6. #226
    Di,

    You truly amaze. I am so crazy proud of you. You have had as tough a battle as anyone I know with this transplant stuff, and you have shown such strength of character to keep battling and maintaining some sense of humor. As I said.....you are amazing....and a hero to us all. Thanks for updating us, and please keep doing so when you can. It always way brightens our days.

    many hugs, much love

    David
    66 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.
    2 yr. post SCT check up: all fine, no issues.

  7. #227
    Super Moderator Top User po18guy's Avatar
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    9,268
    That's the Aussie spirit! Just a touch of encouragement does wonders. And, what a truly charitable spirit your donor has! A bond for life there. No one likes to up the pred - it is like the alcoholic stepping into a bar for "just one for the road." We know where that leads. I just wish that I could scam a flight to OZ - wouldn't we have some talking to do!

    I have found that the pred 'roller coaster' is a fact of life - yet I always remember having fun on roller coasters. That is a bad analogy. More like being in the open sea - in a trough one moment and a wave smashing over you the next. Never mind the ship, I'll take one life preserver, please!

    In some cases (I believe we are related somehow, somewhere) it is simply the way things go. Even though the steroid is killing me, I hated to taper - which is a completely wonky thought process. Still, each and every time I did taper, the GvHD flared and we were off to the races once again. Well, lately, we have been steadfastly tapering, even though ever so slowly (2.5 mg/month). My long-term follow-up doc is a Brit and she wants to taper very slowly, as I'm not supposed to have GvHD at all. Right.

    In any event, I have been receiving the Extracorporeal Photopheresis since May 2017, and I had my doubts along the way. Yet, there is no way that I could taper from 95 to 50ish to 27.5 without my skin being unlivable in. So, reason for positive thinking, and I can keep the ECP treatments whilst in the clinical trial, so we are hoping for a win-win there.

    You are clearly much much stronger than I. Two weeks post-transplant in the prison almost (did?) drove me batty. A weekend I can do, but longer than that and I'm planning an escape. And, the muscle weakness, yeas indeed. I look rather like a stick figure what with skinny arms and legs and a nice, round, puffy face. Oh, and a nice, round, puffy abdomen.

    You have to be alive to have complaints.
    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 TREC (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.
    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 measureable - 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.
    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.
    05/2017 Chronic anemia (low hematocrit). Chronic kidney disease.
    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 of drug KD025, a ROCK2 inhibitor that is believed to help with chronic GvHD.
    03/18 Began 400mg daily of KD025, a rho-Associated Coiled-coil Kinase 2 Inhibitor (ROCK2).
    To date: 18 chemotherapeutic drugs in 9 regimens (4 of them at least twice), 5 salvage regimens, 4 clinical trials, 4 post-transplant immuno-suppressant drugs, the equivalent of 1,000 years of background radiation from scanning from 45+ CT series scans and about 24 PET scans. Having had both lymphoid and myeloid malignancies lend a certain symmetry to the journey.

    Believing in the redemptive value of suffering makes all the difference.

  8. #228
    Administrator Top User Kermica's Avatar
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    Touching every wooden surface that I can.......I think I an turning the corner.
    YES, YES and (did I say it?) YESSSS!!!! You go girl, you go! How blessed you are to have a donor like your sister who pitches in and helps on the home front along with her life saving donation of cells.

    Keep it up, Di, we are watching and pulling for you every step of the way!

    Good health,

    Kermica

  9. #229
    Moderator Top User
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    spirit uplifted, can only lead to more and better things, good to see that spirit never left it just needed a little help to get you back on the road to recovery, families and quality time are the best medicine going.

    onwards and upwards

    John
    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.

 

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