A website to provide support for people who have or have had any type of cancer, for their caregivers and for their family members.
Page 19 of 23 FirstFirst ... 91718192021 ... LastLast
Results 181 to 190 of 230

Thread: Transplant time

  1. #181
    Senior User
    Join Date
    Sep 2016
    Location
    Colorado
    Posts
    287
    Thank you for letting us know the good news, David!!

    Live long and prosper! VMarie

    Quote Originally Posted by David52 View Post
    Clean scans. Blood work fine. No signs of significant GvHD thus far. So off to the next part, which appears to be a whole bunch more vaccinations. Otherwise, all is OK so far.

    Hope everyone is having as good a Monday as possible. Hugs and much love to all.

    David
    Researcher, advocate, and caregiver to my son, age 24
    July 2016, Diagnosed with Systemic ALCL ALK-neg, DUSP-neg, stage IV, IPI 2, PIT 1, normal LDH, normal B2 microglobulin
    Sept 2016, Third round of E-CHOP complete; PET scan NED
    Nov 2016, Sixth and final round of E-CHOP completed - Continued to live alone and work two jobs through chemo!
    Dec 2016, PET scan NED
    March 2017, Experiencing symptoms: cough and stomach issues. Found two small lumps in neck
    March 2017, CT scan shows relapse. Confirmed by PET
    April 2017, CD-30 confirmed with biopsy; Begin Brentuximab for at least three cycles
    May 2017, Biopsy came back with new diagnosis: Classical Hodgkin's! Likely misdiagnosed initially (by three different pathologists)
    June 2017, Only partial remission with Brentuximab
    July, 2017, ICE x 2 (worst yet). Awaiting PET-CT scan.
    August, 2017, very good response, but not CR, moving forward with ASCT. Outpatient at CBCI in Denver.

  2. #182
    Senior User Chef's Avatar
    Join Date
    Mar 2016
    Posts
    174
    Such good news David. I'm glad things are stable for you, may many more years be ahead of you without this beast!!!
    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
    Sent home from transplant ward with infections ~ 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

    I think about legacy a lot, hopefully at the end of the day they say I was a good bluesman. That's all I want.
    -- Johnny Winter

  3. #183
    Top User David52's Avatar
    Join Date
    Jan 2013
    Location
    Central Wyoming
    Posts
    856
    Quote Originally Posted by Chef View Post
    Such good news David. I'm glad things are stable for you, may many more years be ahead of you without this beast!!!
    Thanks, Pal. And will be cheering hard for you from the gallery when you do your auto later this month. You got this.

    David
    65 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. Pet scans after 4th and 6th cycles showed no evidence of lymphoma.
    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. Scanziety still sucks.
    5/15/15: No NED this time; reactive nodes in groin; scheduling biopsy.
    Relapse confirmed/ started every 3 week brentuximab
    Allo transplant in Feb 2016.
    100 day post transplant scans in June 2016 fine.
    1 yr. post transplant blood work fine; clean scan. No GvHD so far.

  4. #184
    Senior User Chef's Avatar
    Join Date
    Mar 2016
    Posts
    174
    Thanks man! It's a bit surreal. I was more ready for the transplant a few months ago now that I've felt decent lately. The "transtipitation" is kickin in lol. Ice chips and a smoothie diet are in order as I hear they help with the throat and mouth issues surely to arise! Do you have any other advise to share?

    Thanks in advance!

    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
    Sent home from transplant ward with infections ~ 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

    I think about legacy a lot, hopefully at the end of the day they say I was a good bluesman. That's all I want.
    -- Johnny Winter

  5. #185
    Administrator Top User Kermica's Avatar
    Join Date
    Jul 2009
    Location
    New York
    Posts
    6,124
    Clean scans. Blood work fine. No signs of significant GvHD thus far. So off to the next part, which appears to be a whole bunch more vaccinations. Otherwise, all is OK so far.
    David, I'm not sure how I missed this good news but congratulations, never the less. I hope things are continuing apace for you and that your recovery continues without incident or setback.

    Good health,

    kermica

  6. #186
    Top User David52's Avatar
    Join Date
    Jan 2013
    Location
    Central Wyoming
    Posts
    856
    Thanks, Kerm. So far, so good. Going to just keep on keeping on. Am hoping your stuff starts moving in the right direction shortly.

    David
    65 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. Pet scans after 4th and 6th cycles showed no evidence of lymphoma.
    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. Scanziety still sucks.
    5/15/15: No NED this time; reactive nodes in groin; scheduling biopsy.
    Relapse confirmed/ started every 3 week brentuximab
    Allo transplant in Feb 2016.
    100 day post transplant scans in June 2016 fine.
    1 yr. post transplant blood work fine; clean scan. No GvHD so far.

  7. #187
    Senior User Kimv's Avatar
    Join Date
    Dec 2015
    Location
    Chico, ca
    Posts
    405
    Good luck Chef. If the swallowing becomes too much of a pain they will offer you a morphine pump. Take it!! There is no use in trying to "tough it out." It helps control the pain and gives you some relief. Sending good thoughts your way in hopes that you come out of this fight...a winner. xoxoxoox 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❤️💜💚💛💙

  8. #188
    Top User David52's Avatar
    Join Date
    Jan 2013
    Location
    Central Wyoming
    Posts
    856

    Looking like relapse.

    So strange 2 weeks. A week ago, I ran an 8.6 mile trail run in the mountains, complete with 4 face plants tripping over roots and the like, in 2 hours, 23 minutes. Just over 16 minute miles, over rugged mostly uphill trail. Wednesday, I had my Pet/Ct scans. This morning, set my personal record for a 5K.....35 minutes flat. And when I got home from that, my oncologist called me at home, on a Saturday no less, to let me know it looks like I have maybe relapsed......lymph nodes in my left neck lit up. I have not had symptom one. But nothing that would obviously explain the lymph nodes, aside from Lymphoma. Next step, figure out an excisional biopsy. If it is what we think it is, I have no idea what is next.

    So, back in the game. I have to say I am more than a little bummed about this......flat out depressed and terrified is more accurate. But off we go. will keep everyone posted as we move along. Maybe I'll get lucky on the biopsy....but my luck on biopsies has sucked to date.

    Hugs and best regards to all.

    David
    65 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. Pet scans after 4th and 6th cycles showed no evidence of lymphoma.
    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. Scanziety still sucks.
    5/15/15: No NED this time; reactive nodes in groin; scheduling biopsy.
    Relapse confirmed/ started every 3 week brentuximab
    Allo transplant in Feb 2016.
    100 day post transplant scans in June 2016 fine.
    1 yr. post transplant blood work fine; clean scan. No GvHD so far.

  9. #189
    Regular User
    Join Date
    May 2016
    Location
    New York
    Posts
    35
    Saying prayers- hoping you have good news.

  10. #190
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Location
    Pacific NW, USA
    Posts
    8,122
    Not what we wanted to hear. Oddly enough, let us hope for infection.

    For the sake of continuity, I have moved this to your transplant thread.
    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. Active surveillance is the course of choice.
    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.

 

Similar Threads

  1. Long time lurker...first time poster and SKEERED!
    By Skeered in forum Lymphoma - Hodgkin's and Non-Hodgkin's Lymphoma Forum
    Replies: 7
    Last Post: 07-12-2013, 11:31 PM
  2. Full-time Worker + Full-Time Caregiver + Full-Time Parent
    By Lisa Renee in forum Pancreatic Cancer Forum
    Replies: 13
    Last Post: 04-09-2013, 07:14 AM
  3. Hodgkin's Lymphoma IV, 2nd time, Stem Cell Transplant
    By Chiquita Banina in forum Lymphoma - Hodgkin's and Non-Hodgkin's Lymphoma Forum
    Replies: 4
    Last Post: 10-11-2012, 11:31 PM
  4. 1st time poster, 4 time biopsy patient
    By Briasten in forum Melanoma and Skin Cancer Forum
    Replies: 2
    Last Post: 08-22-2009, 12:02 AM
  5. Long time listener - first time caller...
    By Billy Pilgrim in forum Brain Tumors Forum
    Replies: 5
    Last Post: 04-02-2008, 11:41 PM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •