A website to provide support for people who have or have had any type of cancer, for their caregivers and for their family members.
Results 1 to 5 of 5

Thread: Update

  1. #1
    Experienced User
    Join Date
    Aug 2017
    Posts
    52

    Update

    Hello Everyone ,

    Been a long time since i posted here, but i log-in to read your stories every day.
    My dad been battling with this disease since the come back of the cancer, as u know we started a new protocol ( Gemzar-Abraxane-Cisplatin) , this protocol is very aggressive , my dad says folfirinox is way better and smoother than gem-abrx-cisp.
    Major side effects were sever bloating, fatigue, swollen legs and abdomen.
    he's been having it two weeks on two weeks off (1-8-21).
    he's been eating very well, i mean very very well, but he's still losing weight, now we're at a stable point of 65 kilos.
    Hydration is a must with this protocol, but since my dad had ascites so we're trying to have a balanced fluid intake, since the progression ascites got drained three times, and it's been like 2 months since we did the last drain, so i consider it an improvement of his situation.
    He had a CT scan last week that showed stability on liver,pancreas,peritoneum and slight shrinkage on lungs mets after 6 sessions ( 3 cycles)
    i dunno if we should consider it a good result since we only did 3 cycles or we should have seen bigger improvements since 3 cycles are not a lot.
    i spoke to his onco about the third line of treatment , and his answer was : Keytruda even with stable microsatellite , after having all those treatments i suppose your dad tumor is very eligible to respond to immunotherapy.
    sorry for the long post have a good day everyone.
    24-06-17 : Dad Dx Stage 4 mass on tail of pancreas , mets on liver.lungs
    06-07-17 :PET :mets to lungs , 4.6 x 3 cm mass on pancreas tail SUV max = 4.2 , innumerable mets on liver SUV max = 6.3
    21-09-17 :CT scan :stable tumor, significant shrinkage of mets on liver
    03-11-17 :CT scan :stable tumor, shrinkage liver mets
    04-01-18 :PET/CT mets in lungs (Scar tissue) ,3.3 cm Calcified tumor showing Faint FDG SUV max = 2.2 ,Necrotic liver mets SUV max = 3.7
    26-04-18 :chemo stop,18 cycles of full Ffx, no active Cancer cells
    19-06-18 :PET scan:NED
    03-09-18 :MRI scan:still NED
    09-10-18 :PET scan:no activity on pancreas, liver,increased activity on lungs SUV max =2.72 .back on FFX 2 Cycles
    12-12-18 :PET scan:increased activity on liver,lungs,peritoneum and pancreas+ascites.Time to switch chemo: gem+abrx+cispl
    22-02-19 :CT shows stability on pancreas,liver,peritoneum shrinkage on lungs mets
    07-10-19 :PET/CT shows :Tumor disappeared ,Shrinkage on liver,lungs mets

  2. #2
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Posts
    10,264
    Thank you for checking back in! Good nes and bad all in the same post. Still, you have your dad with you each day and you can simply enjoy being together, regardless of the eventual outcome. It is very difficult dealing with aggressive treatments, particularly as we age. Yet, the power of love keeps us going, and in the end, that is all that matters. Please keep us updated, as it sounds like your dad is receiving excellent care.
    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.

  3. #3
    Senior User
    Join Date
    Mar 2018
    Posts
    131
    Ahmad, make sure that the chemo infusion itself includes a before and after IV hydration around the cisplatin. This is really important. Also, to help with the swelling, I was given dexamethasone during the cheomo and for the next 3 days. This helped a lot. What were the Ca19's? Stability is good, maybe shrinkage will show up later?
    Mar. '18 - Diagnosed Stage IV with liver mets CA-19 124,000
    Apr. '18 - Started chemo - Gem, Abrx, Cis
    July and Sept '18 - Ct scan - all tumors shrinking
    Oct. '18 - CA-19 - 1,495
    Oct. '18 - Started Gem, Abrx 1/2 dose

  4. #4
    Experienced User
    Join Date
    Aug 2017
    Posts
    52
    hey Jamiepat, sure the infusion includes before and after IV hydration.
    thanks for the tip of dexamethasone, i think they give it to him during the infusion, i'll ask his doc if we can use it after infusion too.
    and my dad is not sensitive to Ca19-9 , so we check up only using the Scans.
    after how many cycles did you start seing shrinkage?
    24-06-17 : Dad Dx Stage 4 mass on tail of pancreas , mets on liver.lungs
    06-07-17 :PET :mets to lungs , 4.6 x 3 cm mass on pancreas tail SUV max = 4.2 , innumerable mets on liver SUV max = 6.3
    21-09-17 :CT scan :stable tumor, significant shrinkage of mets on liver
    03-11-17 :CT scan :stable tumor, shrinkage liver mets
    04-01-18 :PET/CT mets in lungs (Scar tissue) ,3.3 cm Calcified tumor showing Faint FDG SUV max = 2.2 ,Necrotic liver mets SUV max = 3.7
    26-04-18 :chemo stop,18 cycles of full Ffx, no active Cancer cells
    19-06-18 :PET scan:NED
    03-09-18 :MRI scan:still NED
    09-10-18 :PET scan:no activity on pancreas, liver,increased activity on lungs SUV max =2.72 .back on FFX 2 Cycles
    12-12-18 :PET scan:increased activity on liver,lungs,peritoneum and pancreas+ascites.Time to switch chemo: gem+abrx+cispl
    22-02-19 :CT shows stability on pancreas,liver,peritoneum shrinkage on lungs mets
    07-10-19 :PET/CT shows :Tumor disappeared ,Shrinkage on liver,lungs mets

  5. #5
    Senior User
    Join Date
    Mar 2018
    Posts
    131
    slight shrinkage first ct but it continued. My body did "acclimate" to the chemo after more treatments and it didn't seem as difficult. Also, get your dad some knee high pressure stockings if he has swelling in the lower legs. Some go on better than others - my best were from a pharmacy. Best wishes, I know its a fight.
    Mar. '18 - Diagnosed Stage IV with liver mets CA-19 124,000
    Apr. '18 - Started chemo - Gem, Abrx, Cis
    July and Sept '18 - Ct scan - all tumors shrinking
    Oct. '18 - CA-19 - 1,495
    Oct. '18 - Started Gem, Abrx 1/2 dose

 

Posting Permissions

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