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Thread: Transplant time

  1. #241
    Moderator Top User
    Join Date
    Mar 2010
    David, its been a tough winter and what ever the virus or flu bug thats been circulating in both our countries is, it has spiked the pneumonia rate, I know a few who have had it and some young people in their 20's and 30's and its hit them hard, been a shock to them in some cases.
    good to see your both ok now and can get back to enjoying life

    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.

  2. #242
    Administrator Top User Kermica's Avatar
    Join Date
    Jul 2009
    David, it sounds like things are going really well for you at this point, that is just great! I think the unintended consequences of cancer treatment are just a part of life after treatment. I know I am not the same person physically that I was when I started this journey ten years ago. Of course, I am also ten years older so that may be a rather big chunk of the explanation!

    In any event, congratulations on your great progress toward recovery. May your new normal be all that it can be so that the old normal and the new merge seamlessly into one life - yours!

    Good health,

    When the world says, "Give up," Hope whispers, "Try it one more time."
    ~Author Unknown

    Age 66
    Follicular lymphoma diagnosed August 08, Stage 1
    2 cycles (20 treatments each) localized radiation to tumor sites. Remission confirmed July 09
    Restaged to Stage 3 May 2010
    Recurrence confirmed May 2010 - Watch and Wait commenced - multiple scans with minimal progression.
    Cutaneous Squamous Cell Carcinoma diagnosed September 2012. Mohs surgical excision 09/2012. Successful, clean edges all around.
    Significant progression detected in PET scan - December 2012
    Biopsy to check for transformation 1/18/2013 - negative for that but full of lymphoma, of course.
    July 2013 - Rescan due to progression shows one tumor (among many) very suspect for transformation, another biopsy 8/12/13.
    August 2013 - No evidence of transformation, 6 courses of B+R commence 8/29 due to "extensive, systemic disease".
    February 2014 - Diagnostic PET scan states: Negative PET scan. Previous noted hypermetabolic cervical, axillary, iliac and inguinal lymphadenopathy has resolved. Doctor confirms full remission.
    June 2014 - started 2 year maintenance Rituxan, 1 infusion every 3 months. Doctor confirms lump under right arm are "suspicious" for recurrent disease, deferring scans for now.
    February 2015 - Doc and I agreed to stop R maintenance as it is depressing my immune system too much.
    June 2015 - Confirm that the beast is back by physical exam, will scan in August after esophageal issues settle down so we can get a clear view.
    August 2015 - physical exam in error, PET/CT shows no evidence of disease. Remission continues well into second year!
    December 2015 - Cardiologist tells me I have plaque buildup growing at an alarming rate. Stent or bypass down the road but not yet...
    March 2016 - new tumor below the jaw so remission is over. Back to active surveillance until treatment is needed.
    June 2016 - C/T scan indicates presence of multiple lesions in iliac chain.
    August 2016 - PET/CT shows multiple areas of lymphoma as expected plus new areas of concern in bowel.
    January 2017 - C/T scan shows significant progression in cervical and inguinal lymph chains, largest tumor is impacting hearing, measures 2.1x4.6 cm. 4 to 8 cycles of R-CVP, 1x3weeks to commence 2/6/17.
    April 2017 - Mid treatment scan shows about 1/3 reduction in multiple tumors. Also shows abdominal aortic aneurysm with peripheral thrombus. Cardiologist changed meds, spoke of need for surgical repair down the road.
    September 2017 - finished 10 rounds of R-CP, V was stopped due to neuropathy in feet. No further treatment planned at this time, at least 10 tumors can be felt which seem to be growing again.

    December 2017 - Biopsy of external iliax node with SUV of 13.1 shows no transformation! However, the FL grade is now 3A instead of Gr 1-2. Will start indefinite protocol using Copanlisib, one of the new targeted therapies. I remain hopeful.

  3. #243
    Quote Originally Posted by po18guy View Post
    Not all that bad of a report, actually. As to the neuropathy, it would be fine if the feet were just numb. Try walking on gravel or exposed aggregate concrete. It seems that all nerve response and then some returns immediately. Gets me disabled parking though...

    Am much sorry your neuropathy is of the "sharp gravel/aggregate concrete" version. I don't really get that so much....more feels like I've been walking on a beach and have a bunch of sand in my tennis shoes....makes my shoes feel like they don't fit right. The only pain I really have is the occasional crazy cramps in my feet and my hands....that usually happens in bed....for me feet , I usually just have to immediately jump out of bed and jump up and down a bit on the balls of my feet, and it goes away. For my hands, usually at work, after I have been writing too much (yes, am a troglodyte; still do most of my serious wring in long hand). Nothing to do about that other than to just shake 'em and flex 'em til it goes away.

    So I wish it weren't permanent....but I guess it is, and it is a small price to pay for staying alive.

    Hoping your stuff continues to get better.....

    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.

  4. #244
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    All of this simply reminds me to wear something on my feet. Whereas most folks relax and feel better taking their shoes off, I reverse that pattern. I find it edifying at some level that I am constantly reminded of my humanity, with all of its functional limitations. It has become the springboard of much pondering. Hands and feet? Yes, cramps seem to be part of the deal. I have no explanation for that, except that our livers may now excrete an excess of certain enzymes that deplete us of electrolytes. I have had leg cramps all of my life, but they are now joined by hands and forearms. Additionally, there may be molecular events occurring in our nervous systems and musculature which are the cause of the unwanted effect It is enigmatic and it all points to the seemingly infinite complexity of the human person.

    As you correctly state, we must 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.
    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.
    To date: 18 chemotherapeutic drugs in 9 regimens (4 of them at least twice), 5 salvage regimens, 3 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. Two lymphoid malignancies plus a myeloid malignancy lend a certain symmetry to the journey.

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

  5. #245
    Senior User Chef's Avatar
    Join Date
    Mar 2016
    That's really good news and very encouraging for us fellow ALCL'ers! Yes, it's lame that there is always something with regards to after effects. You have neuropathy and I have tinnitus around the clock. Makes for some interesting mixing when I'm wearing the cans. Now I just turn my amps up louder to drown it out, lol, surely that isn't helping. I had neuropathy too, not as bad as you, but bad enough. I can relate!

    Keep up the good work David. Take care and have a good spring/summer as I'm sure you'll have many successful marathons

    Dx NSHL StageIIIA
    CT {groin 6.8 x 3.3 cm} abdomen nodes, enlarged spleen 2/07/16
    Bone marrow, Colonoscopy, Gastroscopy biopsies (-)
    Lung & Heart tests Good.
    Pet scan Worrisome bone marrow 3/17/16
    ABVD 6 cycles started 3/31/16
    Interm Pet (+) 5/19/16
    Stop ABVD 9/01/16
    Pet (+) 10/04/16
    Salvage GDP 10/27/16
    Misdiagnosed from Hodgkins to TCELL ALK NEG stage 4B 12/01/16
    Adcentris 12/05/16 ~ 3/07/17
    Lumbar, Tri-fusion line, G-CSF, Collection 3/17/17 ~ 3/18/17
    Auto stopped due to infections, sent home to wait 3/27/17
    Developed 12 tumors on base of skull, patho = ALK-NEG CD30 4/26/17
    Restart Adcentris 5/18/17
    MUD Allo 8/23/17
    Pet scan NED 12/01/17

    “Each morning when I awake, I experience again a supreme pleasure - that of being alive"

  6. #246
    Senior User
    Join Date
    Jan 2015
    I know the two year post transplant testing was a big step for you and a huge goal for you to get there. Congrats!! It seems like everyone is getting hit by some kind of flu, bronchitis, or pneumonia (knock on wood, not me yet). My husband had bronchitis, and he gave it to my brother (who was not too happy about it) and then he gave it to his wife who had major surgery and the coughing was horrendous. The one who recovered the fastest was my 91 year old father in law who was hospitalized with pneumonia. Go figure. My brother has his two year coming up in April. He also seems to have platelets that can't recover and is tired a lot. I know he has other things that bother him and make him a little worried, but he doesn't share them all with me. His hand has never fully recovered from nerve damage and surgery (I believe from chemo), and he does have stiffness - maybe GVHD in his knee and maybe face. We will see what MSK says. You put it so well about always looking over your shoulder - I'm hoping that with time, that feeling with fade for you. Again, congrats - you are over the two year hump and I pray only good things for you from now on. Deb

  7. #247
    Administrator Top User Didee's Avatar
    Join Date
    Jun 2010
    Doing my lurking and caring thing.
    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. #248
    Thanks, Didee! Hope all is still heading in the right direction for you. You are in my thoughts often.

    Much love, lots of hugs.

    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.


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