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Thread: New diagnosis, sorta....

  1. #11
    Senior User Dead Man Walking's Avatar
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    I think it's the real 1% deal. While my initial diagnosis could certainly have had holes in it, the Mayo clinic tested everything themselves again, and they WOULD have found it. The reason I know that is at the bottom of my BMB FISH data from the test in New Orleans, is the name of the pathologist that did the testing, and the company they work for: The Mayo Clinic Laboratories, Rochester, Minnesota. The date and % for my RPN1/MECOM score is: 12/29/16 - after 9 four week cycles of azacitidine: 1.2% 3/30/15 after 3 5 week cycles of azacitidine: .33% After 4 four week cycles of azacitidine: 3.2% From this data, with the dip for the 5 week cycles, it looks like an upward trend. Once I get my blast numbers, I'll send all of this with the 1976 clinical study to Dr. K. and see what comes back.
    05/6/16 2 pre-op physicals for knee surgery show low WBC & RBC
    05/22/16 [Birthday] Results of BM biopsy are AML 25% blasts CD34 with 3:3 mutation, INTERMEDIATE risk
    05/30/16 Undergo 7-3 treatment
    06/??/16 TSHTF!! 7-3 doesn't touch AML, but knocks out immune system, infections nearly kill me. Blasts 65%
    07/04/16 Diagnosis now Refractory AML. [:tombstone:]
    Six 4 week cycles of azacitidine, 21 injections over 7 days with 1.5" long needle into gut AND below navel.
    11/05/16 Wife & I move to LA, North Shore Lake Ponchatrain - Infusion center 4 minutes away.
    Protocol 15 injections for 5 days M-F with 5/8" 25 ga. needle Huge increase in quality of life.
    12/28/16 BM biopsy shows CD34 cells 6.9% above background level.
    Three 5 week cycles of azacitidine, . Life is good. Azacitidine is minor annoyance.
    04/16/17 BM biopsy shows CD34 12% above background, cycle dropped to 4 weeks.
    7/20/17 Diagnosis changed to "indolent leukemia"...

  2. #12
    Senior User Dead Man Walking's Avatar
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    Good News!!! In my trip to MD Anderson Houston, I was told that one treatment option for my indolent leukemia (hey, man! spare change??) was to add venetoclax to my azacitidine, and while it was currently on-label for treating ALL, it showed promise for AML in experimental trials. My insurer for my medications called me up and said that my request had been denied , which I didn't want to hear. I asked for another review, and on the strength of Dr. Kantarjian's recommendation and the testing done so far, I got a phone call today that said my request was approved!! I told the young lady on the other end of the phone that she had earned her angel wings today!!
    05/6/16 2 pre-op physicals for knee surgery show low WBC & RBC
    05/22/16 [Birthday] Results of BM biopsy are AML 25% blasts CD34 with 3:3 mutation, INTERMEDIATE risk
    05/30/16 Undergo 7-3 treatment
    06/??/16 TSHTF!! 7-3 doesn't touch AML, but knocks out immune system, infections nearly kill me. Blasts 65%
    07/04/16 Diagnosis now Refractory AML. [:tombstone:]
    Six 4 week cycles of azacitidine, 21 injections over 7 days with 1.5" long needle into gut AND below navel.
    11/05/16 Wife & I move to LA, North Shore Lake Ponchatrain - Infusion center 4 minutes away.
    Protocol 15 injections for 5 days M-F with 5/8" 25 ga. needle Huge increase in quality of life.
    12/28/16 BM biopsy shows CD34 cells 6.9% above background level.
    Three 5 week cycles of azacitidine, . Life is good. Azacitidine is minor annoyance.
    04/16/17 BM biopsy shows CD34 12% above background, cycle dropped to 4 weeks.
    7/20/17 Diagnosis changed to "indolent leukemia"...

  3. #13
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
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    Pacific NW, USA
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    It was worth the trip! And, you'll be contributing to the knowledge base for those who follow. I have found that there is a certain satisfaction in that.
    07/08 Age 56 DX 1) Peripheral T-Cell Lymphoma-Not Otherwise Specified. Stage IV-B, >50 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) 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 GvHD arrives.
    DEXA scan reveals Osteoporosis.
    09/26/-11/03/15 Prednisone to control skin GvHD.
    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.
    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.
    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.

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

  4. #14
    Senior User Dead Man Walking's Avatar
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    Lifelong resident of Lake Woebegon (Minnezotah), moved to Louisiana last November
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    This just out of the blue from Facebook, where I hardly ever go..... This was one of my classmates from St. Paul Academy 50 years ago:

    "Sam, do you have AML? My brother is an expert in the area. Please message me so that I can make sure you are getting the proper care. My brother Brian discovered the drug Gleevec. Thank you"

    I told Dave to have his brother get back to me if he has ever heard of indolent AML.
    05/6/16 2 pre-op physicals for knee surgery show low WBC & RBC
    05/22/16 [Birthday] Results of BM biopsy are AML 25% blasts CD34 with 3:3 mutation, INTERMEDIATE risk
    05/30/16 Undergo 7-3 treatment
    06/??/16 TSHTF!! 7-3 doesn't touch AML, but knocks out immune system, infections nearly kill me. Blasts 65%
    07/04/16 Diagnosis now Refractory AML. [:tombstone:]
    Six 4 week cycles of azacitidine, 21 injections over 7 days with 1.5" long needle into gut AND below navel.
    11/05/16 Wife & I move to LA, North Shore Lake Ponchatrain - Infusion center 4 minutes away.
    Protocol 15 injections for 5 days M-F with 5/8" 25 ga. needle Huge increase in quality of life.
    12/28/16 BM biopsy shows CD34 cells 6.9% above background level.
    Three 5 week cycles of azacitidine, . Life is good. Azacitidine is minor annoyance.
    04/16/17 BM biopsy shows CD34 12% above background, cycle dropped to 4 weeks.
    7/20/17 Diagnosis changed to "indolent leukemia"...

  5. #15
    Super Moderator Top User po18guy's Avatar
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    Feb 2012
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    Pacific NW, USA
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    There is indolent "smoldering Myeloma" so I suppose anything is possible. I do note that CML cells are also CD34 positive. Could it be...?
    Last edited by po18guy; 08-10-2017 at 08:37 AM.
    07/08 Age 56 DX 1) Peripheral T-Cell Lymphoma-Not Otherwise Specified. Stage IV-B, >50 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) 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 GvHD arrives.
    DEXA scan reveals Osteoporosis.
    09/26/-11/03/15 Prednisone to control skin GvHD.
    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.
    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.
    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.

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

  6. #16
    Senior User Dead Man Walking's Avatar
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    Lifelong resident of Lake Woebegon (Minnezotah), moved to Louisiana last November
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    Had a nasty scare - Annabelle had been having some mucous and blood coming out of her right nostril, and I finally took her in to my vet. The vet referred me to the 24 hour/intensive care/ER facility for the area, and so with some trepidation I took her there. They did some tests, and said that there was zero airflow out of her right nostril, so they were going to have to do endoscopic surgery to open the airway up, and mentioned that this could be a cancerous mass. While my own attitude bout my survival with AML has been openly callous and belligerent, losing Annabelle is another matter altogether. If I lost the ability to do therapy dog work, I would pretty much be just an old man waiting to die, and that kind of change in attitude could kill me a lot faster than my indolent leukemia. The real scare came the next day when I dropped her off for surgery, and when I got home afterwards there was a large manila envelope waiting in the mailbox. Way back last May I had applied for a vanity plate for my truck, and the plate read: THPYDOG Sure enough, it was the plate, which had been delivered only hours after I took Annabelle in for surgery. Seeing as very little in my life is the result of random chance, this totally freaked me out, and I thought it very well could be a sign that this was the end of the line. To make life even suckier, this was my chemo week. So they did the surgery, and dug out tissue to clear up the airway and also reduce a mass seen on the brain by the CT scan ($$$$$$$$$$$$!!!) In the meeting today they explained there was a fair chance it was a carcinoma, and the 1st line of attack would be some dog pills than can attack this kind of tissue in some cases, and if that didn't work then radiation treatment would be the option. The nearest facility is Baton Rouge, which is a 1+ hour drive to the West. The good news is that the radiation generally takes care of it, and produces a clean remission.

    Now it gets interesting...... Being the drop dead gorgeous therapy dog she is, the techs all clustered around her and petted her (4 at once!), and somebody else took a picture. They then asked if they could use the pictures & story on the clinic's website, and I signed the form for that, and apparently this is only the 2nd dog to be featured that way. I then decided to give them the link to my post about Annabelle in the inspiration stories forum, so they could have a little more detail. Seeing as Annabelle's Ochsner ID is shown there, I told them they would have to talk to Ochsner about that. As of now, however, the story line has changed from old guy with leukemia working the peds ward, to old guy and therapy dog who BOTH have cancer working the peds ward. This narrative is a bit on the scary side, because it looks like a large lightning rod stuck has been stuck into the ground right next to where Annabelle and I are standing, and I can hear thunder in the distance. I'm going to have to remember to keep my head down from here on in.....
    Last edited by Dead Man Walking; 08-11-2017 at 06:40 PM.
    05/6/16 2 pre-op physicals for knee surgery show low WBC & RBC
    05/22/16 [Birthday] Results of BM biopsy are AML 25% blasts CD34 with 3:3 mutation, INTERMEDIATE risk
    05/30/16 Undergo 7-3 treatment
    06/??/16 TSHTF!! 7-3 doesn't touch AML, but knocks out immune system, infections nearly kill me. Blasts 65%
    07/04/16 Diagnosis now Refractory AML. [:tombstone:]
    Six 4 week cycles of azacitidine, 21 injections over 7 days with 1.5" long needle into gut AND below navel.
    11/05/16 Wife & I move to LA, North Shore Lake Ponchatrain - Infusion center 4 minutes away.
    Protocol 15 injections for 5 days M-F with 5/8" 25 ga. needle Huge increase in quality of life.
    12/28/16 BM biopsy shows CD34 cells 6.9% above background level.
    Three 5 week cycles of azacitidine, . Life is good. Azacitidine is minor annoyance.
    04/16/17 BM biopsy shows CD34 12% above background, cycle dropped to 4 weeks.
    7/20/17 Diagnosis changed to "indolent leukemia"...

  7. #17
    Experienced User
    Join Date
    Nov 2016
    Location
    Montreal
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    Quote Originally Posted by Dead Man Walking View Post
    Had a nasty scare - Annabelle had been having some mucous and blood coming out of her right nostril, and I finally took her in to my vet. The vet referred me to the 24 hour/intensive care/ER facility for the area, and so with some trepidation I took her there. They did some tests, and said that there was zero airflow out of her right nostril, so they were going to have to do endoscopic surgery to open the airway up, and mentioned that this could be a cancerous mass. While my own attitude bout my survival with AML has been openly callous and belligerent, losing Annabelle is another matter altogether. If I lost the ability to do therapy dog work, I would pretty much be just an old man waiting to die, and that kind of change in attitude could kill me a lot faster than my indolent leukemia. The real scare came the next day when I dropped her off for surgery, and when I got home afterwards there was a large manila envelope waiting in the mailbox. Way back last May I had applied for a vanity plate for my truck, and the plate read: THPYDOG Sure enough, it was the plate, which had been delivered only hours after I took Annabelle in for surgery. Seeing as very little in my life is the result of random chance, this totally freaked me out, and I thought it very well could be a sign that this was the end of the line. To make life even suckier, this was my chemo week. So they did the surgery, and dug out tissue to clear up the airway and also reduce a mass seen on the brain by the CT scan ($$$$$$$$$$$$!!!) In the meeting today they explained there was a fair chance it was a carcinoma, and the 1st line of attack would be some dog pills than can attack this kind of tissue in some cases, and if that didn't work then radiation treatment would be the option. The nearest facility is Baton Rouge, which is a 1+ hour drive to the West. The good news is that the radiation generally takes care of it, and produces a clean remission.

    Now it gets interesting...... Being the drop dead gorgeous therapy dog she is, the techs all clustered around her and petted her (4 at once!), and somebody else took a picture. They then asked if they could use the pictures & story on the clinic's website, and I signed the form for that, and apparently this is only the 2nd dog to be featured that way. I then decided to give them the link to my post about Annabelle in the inspiration stories forum, so they could have a little more detail. Seeing as Annabelle's Ochsner ID is shown there, I told them they would have to talk to Ochsner about that. As of now, however, the story line has changed from old guy with leukemia working the peds ward, to old guy and therapy dog who BOTH have cancer working the peds ward. This narrative is a bit on the scary side, because it looks like a large lightning rod stuck has been stuck into the ground right next to where Annabelle and I are standing, and I can hear thunder in the distance. I'm going to have to remember to keep my head down from here on in.....

    Hi DMW,

    Annabelle is so beautiful. I had a cat for 11 years called Zoe. After 11 years I had to have her put to sleep because she had kidney degeneration and there was nothing more I could do. This may sound crazy to you, but after her death, I thought I received a few "signs" from her some of them quite striking, followed by many years of silence. Then, four months ago, my father passed. As much as I would like to be receiving signs from him... nothing. But signs from Zoe have begun once more.

    O.K. so you think I'm crazy... maybe I am but with this cancer I am living with I am in a vulnerable place... so bear with me...From what I see on her pictures, beautiful Annabelle is still young and strong and I do feel she will pull through. So, I'll be praying for her and keep us posted on her progress.

    Give her a big hug for me.

    Marie

 

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