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Thread: ALL Leukemia B Cell Phila positive

  1. #11
    Regular User
    Join Date
    May 2017
    Abeucher, have the exact kind of Leukemia as you also Phil +, I am now almost at 12 months since my stem cell transplant Feb 22, 2017. I am 68 years young hope things work out ok sure is scary reading about this as I am being told the same no signs of anything.
    I started with Sprycell had it for around say five months then my kidneys failed and I have been taking Nilotinib now for around five or six months now.
    Hope they can give you a new treatment just crazy how this stuff can be gone with no signs then bang hit back scares the heck out of me. One just does not know what to do carry on with life or get everything in order.

    God Bless

  2. #12
    Experienced User
    Join Date
    Dec 2017
    Hello Brucecav! It is my husband that has leukemia, like you. There is one difference that I noticed between you, my husband was not prescribed Sprycel until he relapsed. I remember his BMT doctor inquired with the hematologist post transplant, but he didn't prescribe it right away. I think its good that you were on it as a preventative. I am sorry you experienced kidney failure, but I'm glad you have had success with the second therapy. My husband is on the same chemo that you are on now. I am wondering if you would be interested in sharing any information regarding your treatment plan prior to your transplant and if your donor is related? Also, what type of work you were in. I am always looking for information to try to understand how someone gets leukemia. We were told my husbands leukemia is caused from long term exposure to either gasses, chemical or pesticides. We cant think of anything he did long term that he would've been exposed to. He spent 32 years working in the grocery business. That was his only job.

    He was admitted to Moffitt Cancer and Research Hosp in June 2014. His treatment plan was HYPER-CVAD. He did not reach remission after the first two cycles. He then received 4 more cycles before his transplant in December 2014. His older brother was his donor and I thank him all the time. He saved his life. We are thankful. It has been a long road with many bumps but we're very fortunate to receive the care he's receiving.

    If there is anything I can help you with, please ask. We are always willing to share information if it will help someone.

  3. #13
    Regular User
    Join Date
    May 2017
    Well I should have kept a record of all my treatments but did not. My Acute ALL Phil + is on the presumptive list of diseases for exposure to Agent Orange and contaminated Camp Lejeune drinking water. I have been a 100% disabled veteran for many years but when I was 1st diagnosed the VA said they would not pay for my treatment as it was to expensive. Then they stated because it was not service connected they would not pay for it. Then after it became service connected they said they would not pay for my stem cell transplant. Anyway I had private insurance that did pay for it or I would have died as they did not award my service connection till after I would have died without my stem cell transplant my doctor at 1st gave me 3 months to live.
    The first doctor that diagnosed me said I had ALL Negative but then I was immediately admitted to the Hershey Cancer Institute where I started chemo IV same day. But then their tests showed I had acute ALL Phil positive so I was switched to the Sprycell. I forget but then get more chemo IV to kill my Leukemia and so on before my stem cell transplant. I was very lucky as my sister and older brother were both perfect stem cell matches but they prefer giving a man stem cells from a man when possible so I received my brothers stem cells Feb 22, 2017.
    As said I was taken off the Sprycell after several months and was in the hospital for 10 days because my kidneys shut down and fluid was building ou outside the lungs and leaking into my lungs. I was again lucky as my body got rid of the fluid on it's own after I was given water pills for several days.
    I was off the Sprycell for around 20 days then started to take the current Nilotinib - Tasigna. He olny has me on 400 MG per day maybe because of my age I am 68 not sure but have only been taking 400 MG and the usual does is 800 MG.

    He said I have a very rare type my Chromosomes are crossed or something like that I will ask him Monday Feb 26th since my chromosomes are crossed what will stip this from coming back when I stop taking the Nilotinib after two years.

    I am also lucky my wife of 45 years is a retired heart nurse and she right away researched everything about Leukemia I would have been lost without her. She is also my ears as I am deaf without my hearing aids and can not understand my cancer doctor good as he is Japanese. He is the head of the Hershey Cancer Institute he said while he has treated many Leukemia patients I am the 1st he has treated with my rare type.

    I am sure your husband has been through many, many treatments as I have, had at 1st many blood transfusions and platelet transfusions and other transfusions. Will be my 1st birthday Feb 22nd my doctor said the magic number is to make it two years after that he feels I should be safe from this coming back but as said we do not understand about the crossed chromosome type.

    I sure hope your husband goes back into remission and stays there tell him to hang in there hope we both stay out of the hospital I hate hospitals. God Bless

    My official diagnosis
    acute lymphoblastic leukemia in December
    2016. BCR/ABL by PCR was negative for p210 and p190 assays, but was positive for rare e1-a3 variant
    Last edited by Brucecav; 02-19-2018 at 02:23 PM.

  4. #14
    Newbie New User
    Join Date
    Apr 2018

    I'm 'new' to this forum [Europe, Belgium, Antwerp]...
    My wife got the diagnosis 'T-PLL' a few weeks ago.
    The chemo/immuno(mabcampath) should start next thursday(9 april '1.
    Has anyone any experience, or knowledge of therapy of T-PLL with 'Venetoclax'
    because this seems to proof 'promissing' in some research projects and
    we consider it as next phase if the more classical approach wouldn't give enough result.
    (examples of R&D: Europe = Medical University of Vienna / US = https://immuno-oncologynews.com/wp-content/uploads/2018/03/nejmoa1713976.pdf)


  5. #15
    Experienced User
    Join Date
    Dec 2017
    No my husband has ALL ph+ - I wish you and your wife the best. Stay strong

  6. #16
    Regular User
    Join Date
    May 2017
    Been awhile since I checked in sorry, doctor still has me on the Nilotinib - Tasigna 400 MG X1 guess I will be staying on this for at least two years from my stem cell transplant. Well was on the sprycell at 1st but as my story goes had to stop that shut down my kidneys.
    So far the Nilotinib is doing good for me no signs of any Leukemia cells happy to say.
    The doctor just said I can now only come in every two months for blood work.

    Seems like it has been four years since I first got this but has only been 17 months now since I found out I had the ALL Phil +

    Hope you are all doing as good as me guess we all worry will it come back sure hope not.

    The Nilotinib does effect my muscles and skin but I am still alive that is the main issue. Stopped the anti-rejection medicine but developed some Graft VA Host disease so the doctor started me back on a small amount and my rash went away he said he will keep me on it for a few more months again then he will stop it again.

    Take care and hang in there everyone.

  7. #17
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    That is great news! As always, some minuses mixed in, but as you note, you are alive to complain! Either of the "acute" leukemias is a nasty habit to pick up. It is very good to hear of a success story.
    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.
    11/19 MRI of brain reveals apparently benign frontal lobe tumor. Has the appearance of a cerebral cavernoma. Watch & wait on that.

    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.

  8. #18
    Regular User
    Join Date
    May 2017
    Abeucher how is your husband doing?

  9. #19
    Experienced User
    Join Date
    Dec 2017
    I'm sorry I haven't checked on this lately. My husband was on Sprycel until early 2017 and then Nilotanib (sp) until June of this year, Then Iclusig or Ponatinib (sp) . None of the therapies ever got him into remission but kept his numbers manageable. Until now. James is in Moffitt now receiving Blincyto. He is on Day 9 of his fist cycle. Tomorrow his dosage will be increased to full dose and if he tolerate the increase well, he comes home Tuesday. When they first administered Blincyto, they had to stop after 6 hours. They held off for two hours and restarted. After 6 hours, he hd the same issues so they held off for another two days. Third time is charm, and he is not having any issues at all. I know next to nothing about Blincyto.

    I hope you are doing well. We were able to get a trip in to Alaska over the summer. I recommend travel. : )

  10. #20
    Newbie New User
    Join Date
    Nov 2018
    I'm still reading through all of your posts, but I am Phildelphia positive as of 09-12-18. So I am still very new to the disease. However, I have done nothing but read blood journals and stream conferences and talks about the disease.

    One thing I noticed that seemed very strange in your first post, Sprycel is a fantastic drug for getting into remission but alone it has over 80% relapse rate. I was very surprised that they did not have a plan in place for his second remission. Bolintinib while more durable than sprycel is still not as effective or durable as Ponantinib. In a relaspsed or refractory state I really cant see why they would not jump to the strongest drug available. It has slightly higher toxicity, but the durability is much much better with it. Its downside is that it has a chance to cause heart complications, but recent dosage changes have limited it to around 5% of patients.

    MD Anderson actually recommends using ponantinib as a front line treatment now. My doctors are trying to get me approved for it as well, but its currently only fda approved for relapsed patients or as a clinical trial.

    The other promising treatment for relapsed Philadelphia ALL is car tcell's. Again it has a higher toxicity, and more complications, but it is producing remissions at a pretty high rate.


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