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Thread: Guess I should introduce myself.

  1. #1
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    Guess I should introduce myself.

    Hi. My name is James and I have AML (Acute Myeloid Leukemia). Initially Doctors thought I had lung cancer because I developed a major cough and exrays showed that some of my bronchial tubes appeared to have something in them. A bronchoscopy was performed by a lung specialist but I had also kept appointments with an oncologist per the ER doctors suggestion/orders. The oncologist had me get mri's and cat scans. All but the lungs appeared clear. Went to a meeting with the oncologist and he seemed to agree with the lung specialist that I probably had lung cancer. This meeting with him I had with me my family and closest friends all there for the information and the verdict for a course of action. He said it should be treatable and probably curable based on what he was seeing. Although it bothered me, it was a big relief for me and also my family and friends. We left feeling a little lighter and knowing we had a plan and lung cancer was going to be toast.
    It was a work day and I went in to work and the rest of the family got on with the rest of their eventful, or not, day. Fat dumb and happy. Now a side note to this story. For at least a month while experiencing the cough, the one thing the doctors locked into, I had other small signs that something was amiss. I had a constant fever that I kept at bay with ibuprofen. Worked fine but the fever would immediately come back as soon as the pills wore off. Also I had mouth sores of all types. Those were ongoing for months before as well. They'd go away with my cleaning cleansing and brushing efforts, only to pop up again in a few days somewhere else. The weirdest things were painful red golf ball size bumps that would show up under the skin and doing it in pairs. One on my left thigh and forearm and the other on the right thigh and forearm. I mentioned those to the doctors extensively for a long time of doctor visits but they generally dismissed them as oddities but not part of the problem.
    I hadn't been at work for an hour and I was still feeling good when my cell phone rang. It was my oncologist. He said I'm sorry to tell you this over the phone but we don't have time to waste on this. (Insert Uh oh here since you know that's what I said.) You have Leukemia. We don't know for sure yet but it appears to be Acute Myeloid Leukemia. Be here first thing in the morning for hospitalization. You'll be here for about a month. We'll start chemotherapy immediately. So I ask "Are you sure?" 99% yes. Ok. So I got up, explained to my boss what was going on, and I went to visit my mother with a great sense of dread at the thought of having to tell her this after all the relief we had gotten just a little earlier that morning. And as I drove the 20 miles, I proceeded to mentally fall apart. I didn't know what AML was but it just sounded bad.
    Now a long story made a little longer but trying to make it shorter, I was in the hospital for a month and I was on chemotherapy for a week solid. Two types. One nicknamed red devil and the other was Cytarabine. I think it's called the induction phase of chemo....Maybe? My numbers came up and I was released with the knowledge I would have four more months of Chemo. Consolidation Phase. I've made it through three months and had no issues till this last one was finished. Then I started having sinus issues and a fever creeping in. I caught the flu according to tests. They hospitalized me for another week to get that under control and I'm taking the last pills of tamaflu tomorrow morning.
    One more piece of information. I'm a 47 year old male and I had just gotten a divorce and was two days from closing on a house when this all hit like a train. I moved in with my mother with my future in such question and uncertainty of knowing whether or not I could pay for a house. It seemed like the best choice. She now has either the flu and a severe cold. I suspect she has pneumonia but she won't go to the doctor. I was told to stay away from sick people right now because I have no immune system..........AAAAAHHHHHHRRRRRRR!!!!! Ok breathing again. How are you?

  2. #2
    Super Moderator Top User po18guy's Avatar
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    James, sorry to welcome you under these circumstances. The totality of it all must seem overwhelming. AML is a challenge, but it sounds like the treatment is working well. The effects of the chemo will be cumulative, and toward the end of consolidation therapy, you will probably feel like a train wreck. However, as aggressive as AML is, aggressive therapy is required. Red devil/Red Bull (Adriamycin/Doxorubcin) I have had in two types, and it is rotten stuff, but still better than the leukemia. Ara-C is one of the few drugs that I did not receive, actually. One of the few other advantages of Ara-C is some anti-viral effects that it has. Having had a suppressed immune system off and on since 2008, and a suppressed immune system by design as we speak, precautions around family/friends/public are prudent steps to take. I wear a mask and cotton gloves when in close contact with others in closed spaces - at church this morning, for instance. Here is hoping that consolidation therapy goes well.
    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.

  3. #3
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    Hi Po18guy. Wow I feel like a lightweight compared to you when I read everything that you've been through. Yes AML certainly turned my life on a dime. I never thought I would say this but I miss working every day and I've decided I'll never retire as a result of this time off experience. I'm not familiar with Ara-c at all. I'll have to look it up now when I get back from my office visit this morning. That's IF they don't decide to admit me again. Fighting a very low grade fever the last two days but Tylenol seems to manage fairly well. I've been lucky thus far. The doctor told me that I went into full remission (but temporary) after my induction phase. He said I have the best markers to cope with the specific Leukemia that I have. In turn this means I have the best genetic chance to get rid of it based on the markers. He also said when this is through, if they check and don't see anything after the consolidation is finished, then he might actually you the c word and say I am outright cured. Something I know, doctors don't do very often when it comes to Leukemia or Cancer. I was a little too cavalier at times around the public so that's probably why I caught the flu. Not anymore. I don't leave my bedroom without a mask now. I won't go into any store without a mask and I won't leave the store parking lot until I've practically bathed in hand sanitizer. lol I don't put my hands anywhere near my face without dousing them with the sanitizer. Anyway, no more risk taking for me. I've got to get this done and hopefully get it done for good. What is a skin punch biopsy? Not sure I want to know but there's the question. I've had 4 bone marrow biopsies so far. I'm assuming they'll be another done when this is over. Thank you for your response po18guy. I may have follow up question at some point.

  4. #4
    Super Moderator Top User po18guy's Avatar
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    Ara-C is just another name for Cytarabine. Skin punch biopsies look for the cause of some form of skin manifestation, from dermatological conditions (autoimmune disease such as psoriasis) to various infections to skin lymphomas to evidence of graft-versus-host-disease after a stem cell transplant. It is a 2mm punch that takes a small core of your skin so that the dermato-pathologist may examine the various layers for their structure and content.
    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.

  5. #5
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    Jan 2017
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    3
    Hi warbird,
    Your treatment sounds like it's going well. We have a similar story, it's a quick turn around once you ge diagnosed. You have good cryogenics? While high dose ARA-C was always easier rounds in the hospital for me compared with induction, it was always a roll of the dice if I would end back up in the hospital for neutropenic fevers, sepsis, or pneumonia. I think two of the 4 rounds I got an extra hospital stay because of these. Any issues with bleeding while on ARA-C?

  6. #6
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    Knoxville Tn
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    Hi Bootanger. I guess yes on the cryogenics. Can't remember if that's what they called it but probably. This was my 3rd round of consolidation and the first two went fine. I'd have the sensation of being sunburned after each treatment, especially on my face. I had no major issues with bleeding although I would have some minor clots show up blowing my nose but it was contained to my nose. I had the choice of doing each week of consolidation either in the hospital for the entire week or they were willing to try it on an outpatient basis for me. Other than catching the flu, It's worked out just fine so far. My biggest issues are fevers, which I finally think for this round I've gotten on top of, or the worst was when I was in the induction phase and for about two weeks I had a mouth sore/infection on the side of my tongue so bad that I didn't want to talk, let alone eat. It was very bad. I lost a ton of weight during that time.

 

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