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 9 of 9 FirstFirst ... 789
Results 81 to 90 of 90

Thread: Well O.K. here I go with chemo

  1. #81
    Regular User
    Join Date
    Oct 2013
    Posts
    48
    $16,000 for a single infusion - ay carumba!!
    Age = 44
    Stage 3 follicular NHL & Hodgkins
    Diagnosed Sept 2013
    Escalated BEACOPP + Rituximab completed 2017

  2. #82
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Posts
    9,007
    For those who receive their treatment via HealthCanada, check out Lymphoma Canada. They have done much to accelerate the adoption of new therapies, testifying before Parliament and acting in an advisory role. If you can, throw a few dollars their way. To name just one, if Romidepsin (Istodax) is available in Canada, you can thank them for that in large measure.

    https://www.lymphoma.ca/
    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.

  3. #83
    Senior User
    Join Date
    Nov 2016
    Posts
    134
    Quote Originally Posted by simon_h View Post
    $16,000 for a single infusion - ay carumba!!

    Hi Simon,

    Here in Canada, we have a public health system that isn't perfect but, all in all, in my view, is totally functional. But, there is also a parallel private health system that only people with huge insurance policies or huge bank accounts can afford. As I said in a previous post, here in Québec, people who are receiving a Rituxin-Bendamustine treatment can't have a Rituxin maintenance treatment. This decision is based on a study, lead by a German researcher whose name I don't know, that supposedly reveals that a Rituxin maintenance regimen for people like us doesn't have any benefits. So my hemo-on told me that if I wanted a Rituxan maintenance treatment I would have to turn to the private system. I asked him how much would the treatment cost and he said: "About $40,000.00. Yep... Gulp!

    So, as usual, I'm scared stiff!

    Marie

  4. #84
    Regular User
    Join Date
    Oct 2017
    Posts
    27
    Just saw your post elsewhere that you've had your final treatment, Marie - congratulations!! I'm so glad that it wasn't tooooo bad for you, and extremely happy that it worked and you are cancer free!!!!!!

    If you're like me, it may take a little while for it to sink and and for you to start feeling celebratory. But enjoy getting back to normal - in a couple months it'll all be a distant memory!

  5. #85
    Senior User
    Join Date
    Nov 2016
    Posts
    134
    Quote Originally Posted by pjs View Post
    Just saw your post elsewhere that you've had your final treatment, Marie - congratulations!! I'm so glad that it wasn't tooooo bad for you, and extremely happy that it worked and you are cancer free!!!!!!

    If you're like me, it may take a little while for it to sink and and for you to start feeling celebratory. But enjoy getting back to normal - in a couple months it'll all be a distant memory!

    Thanks for the information pjs, I'm still a little "under the influence" but I've started feeling more hopeful. Indeed, I have begun to feel a bit normal and I have an appoinment with a nutritionist in a month or so. I want to feel better still and get the "gook" out of my system as fast as possible. Thanks for being there along the way; your reassurances have been precious. I hope your own health is as good as can be.

    Best regards,

    Marie

  6. #86
    Regular User
    Join Date
    Oct 2013
    Posts
    48
    Water, exercise and good clean non-processed food are the best way to get rid of the gook
    Age = 44
    Stage 3 follicular NHL & Hodgkins
    Diagnosed Sept 2013
    Escalated BEACOPP + Rituximab completed 2017

  7. #87
    Senior User
    Join Date
    Nov 2016
    Posts
    134
    Quote Originally Posted by simon_h View Post
    Water, exercise and good clean non-processed food are the best way to get rid of the gook

    So true! My hemo-onc also insisted on protein to repair tissue. I'LL DO IT!!!

  8. #88
    Moderator Top User
    Join Date
    Mar 2010
    Posts
    1,005
    may be worth getting your iron levels and vitamin D levels checked just to see if you need a boost to help you get over treatment if fatigue becomes an issue, and it will take around a couple of years before all trace of chemo is gone from your body, the is an equation you can do that tells you if you know the dosage you had

    good luck on the recovery route the spring sun will help I am sure
    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.

  9. #89
    Senior User
    Join Date
    Nov 2016
    Posts
    134
    Quote Originally Posted by johnr View Post
    may be worth getting your iron levels and vitamin D levels checked just to see if you need a boost to help you get over treatment if fatigue becomes an issue, and it will take around a couple of years before all trace of chemo is gone from your body, the is an equation you can do that tells you if you know the dosage you had

    good luck on the recovery route the spring sun will help I am sure

    Hi John,

    Two years! I was thinking a few months only! What is this equation you are talking about? What information do I need to do it?

    Thanks in advance,

    Marie

  10. #90
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Posts
    9,007
    Good that treatment is past. Couple of idiosyncrasies to express: I prefer to go forward to the new life, rather than back to the old. Why? That old life had cancer in its future. In retrospect, was the chemo as terriblyhorriblythreateningly bad as you had feared? Am guessing not.

    Cognitive alterations: Do not think or look too far ahead. You could be T-boned on the way to an appointment resulting in lights out with no warning. That is what we should be wary of.

    What does the future hold? I don't know and I don't care. Being non-prophetic, I am living right here and right now. That's all I have and that's all I will ever have. Consider trying to become "life-myopic" as in focusing on today. Maybe tomorrow. Beyond that, the corrosion of worry bursts through the door. No thank you!
    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.

 

Similar Threads

  1. Well it is back and here we go again
    By Rokbern in forum Lymphoma - Hodgkin's and Non-Hodgkin's Lymphoma Forum
    Replies: 212
    Last Post: 02-22-2018, 06:08 PM
  2. Replies: 6
    Last Post: 10-17-2014, 10:06 AM
  3. Hey everybody, I'm new here as well.
    By jordyb67 in forum Brain Tumors Forum
    Replies: 3
    Last Post: 09-19-2012, 05:42 AM
  4. Well, here I am
    By dennper in forum Colon Cancer and Rectal Cancer Forum
    Replies: 10
    Last Post: 04-10-2012, 03:53 AM
  5. 2nd chemo went well
    By scooter60 in forum Lung Cancer Forum
    Replies: 3
    Last Post: 01-21-2012, 12:19 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
  •