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Thread: New Member and long term survivor

  1. #1
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    New Member and long term survivor

    Hi. My name is Pete. I was diagnosed with AML in June of 2000. I was 40 at the time. Scared me to death as I'm sure you can all relate to. However they put me into remission and that's where I've stayed to this day. I'm somewhat of a legend at the Dana Farber Cancer Institute for not only doing so well but with how much courage I showed in the process.

    Please don't get me wrong. I don't pretend to be some courageous and brave cancer survivor. On the contrary in fact. Since I was scared to death and cried a lot (Yep! A man who admits to crying. I'm the modern man. Lol!!!) I thought I was a coward. And that bothered me to no end. But do you want to know what I learned? I'll tell you anyway. I learned that courage was not the absence of fear but having fear and doing what is necessary in spite of it. That's right! No fear, no courage and no brave souls. Please keep that in mind when you're scared when fighting Leukemia. I recommend looking up what the marine corps say about courage

    Courage is not the absence of fear; rather, it is the strength to overcome fear.
    One thing that I'd love to see get done in fighting Leukemia is to have a knowledgeable person available to new patients to answer all their questions and inform them of all the things they need to know. The greatest mistake being made today is the assumption by doctors that making pamphlets available with this information is sufficient. However I know from experience that when you first find out that you have Leukemia that you can't focus. And I can't speak for others but I was unable to focus in reading all those pamphlets. And the pamphlets don't tell you what you really want to know and that's your chance of living. The correct question to ask is What is the 5-year survival rate on my kind of cancer? family members, nurses and doctors don't want to discuss it because it might scare you. Well, duh! I'm already scared. What I need now is information. And don't lie or deceive because I may never trust you again. Again, I speak only for myself.

    After a while I learned how to not be afraid anymore. At first I was so scared of dying I couldn't face it. In the end I came to see that I had to do the opposite. So instead of avoiding thinking about it I tried to imagine the worst case scenarios and follow all of them through to the end. So while it was still terrible I was no longer scared to that extent.


    Hope that helps at least one person. I'll be around though. It turned out that getting Leukemia wasn't the worst thing that could happen to me. That came five years later and made me wish the Leukemia had killed me.

    As you can see, I'm only going to speak the truth here. No BS to soften what you might think needs to be softened.

  2. #2
    Super Moderator Top User po18guy's Avatar
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    Welcome! And, anyone with 17 years into the AML journey has accomplished quite some feat. An excellent hematologist you had!
    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
    Hello, PmbPhy! Thank you for posting your experience with a lethal disease like AML. It is a very good thing to have experiences like yours for worried newcomers to look at, rather than some longevity statistics that are ONLY statistics, which don't do diddly squat to allay anyone's fears. And I have to agree with po18guy, 17 years is DAYUM impressive!! As a matter of fact, it may leave you with a slight issue to worry about concerning what you actually WILL die from, because it doesn't look like it will be the leukemia after all. To distill my experience way down, I discovered I had it by "accident" due to a pre-op physical for a total knee, and it was just barely enough to look into. The resulting 7-3 proved I had refractory AML, so all the options I had went out the window nearly immediately. I was told I had a 50% chance to live 6 months, and that WAS the long term diagnosis. Looking back on it, I feel like the way things turned out was actually a GIFT, because there wasn't a damn thing I could do about it, so worrying was a complete waste of time. I also had/have a very meaningful and fulfilling volunteer career, (inspirational forum), and when I'm doing that work I feel like nothing on this earth can touch me. Based on what I have seen over the years, I am convinced that one's attitude towards a disease IS a tangible object/weapon that will affect the outcome, and so here I sit 1 year post diagnosis with no symptoms that affect the quality of my life at all. Based on a clinical study on azacitidine, which I am on, (Feneaux et al, 2009) it looks like I may have another two years left. My birth mother died of rheumatoid arthritis at age 61, so I have already beaten "the house odds" as far as I am concerned. Every day is now a gift, and that's the way I live. And on that basis, having refractory AML, regular AML, or no AML at all no longer means diddly squat to me. Life is good.
    Last edited by Dead Man Walking; 07-01-2017 at 06:51 PM.
    05/6/16 pre-op physical for surgery show low WBC & RBC
    5/22/16 [Birthday] Results of BM biopsy: AML 25% blasts with inv t(3:3) mutation, HIGH risk
    5/30/16 Undergo 3+7 chemo, but it doesn't touch AML, infections nearly kill me. Blasts 65%
    7/04/16 Diagnosis now Refractory AML. [:tombstone:]Six cycles of azacitidine, 21 shots over 7 days w/ 1.5" needle into gut + below navel.
    11/05/16 Move to NOLA - Infusion center 4 minutes away. 15 shots for 5 days with 5/8" 25 ga. needle Huge increase in quality of life.
    12/28/16 BMB shows blasts 12%
    4/16/17 BMB shows CD34 16%, cycles dropped to 4 weeks
    7/20/17 Diagnosis changed to "indolent leukemia", aka MDS
    7/27/17 BMB shows CD34 17%
    8/15/17 Venclexta chemo in PILL form added Onc estimates survival time now 2 - 4 YEARS.
    10/26/17 BMB results show 17/20 metaphases with inv(3:3) mutation-low blood cell counts - transfusions ineffective
    12/4/17 Diagnosis: Uncontrolled refractory AML

  4. #4
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    Thanks. I'd like to upset people here intentionally for a moment. But it will be righteous indignation if anything. Its a story about one of use cancer victims being treated inhumanely but a witch of a nurse as well as other people, except for the patients doctor - bless her heart. It was published in the prestigious medical journal, The New England Journal of Medicine

    The Other Victims of the Opioid Epidemic June 1, 2017, Glod S.A. N Engl J Med 2017; 376:2101-2102
    http://www.nejm.org/doi/pdf/10.1056/NEJMp1702188

    After I reached my 5 year milestone I got a herniated disk. Pain beyond imagination. So bad there were times I couldn't walk so I had to crawl to the bathroom. And that pain was at the severe level almost constantly for ten years. It made me so miserable that I tried many times to kill myself. My pain specialist at Mass General recommended methadone. But my doctor was so ignorant that he didn't know he could write a script for methadone for pain. He assumed he had to send me to a methadone clinic. I told him that only accept narcotics addicts. The idiot suggested that I tell him that I was a narcotics addict.


    Oh! The stories of this 12 year nightmare that I could tell you. E.g. my HIPAA rights were blatantly violated. But guess what? Just because a hospital or doctor violates the law like that it doesn't mean you can sue him. You can try to get lawyer but there's no reason to assume a lawyer will take your case. I've contacted 5 if them already and all 5 won't talk to me.

    So much for HIPAA rights, huh?

    No worries. I've been so abused by doctors that I got sick and tired of being treated so inhumanely that I contacted my congresswoman and have every intention of getting the laws changed to protect us. I'll let you know what happens. But if you find that article as horrifying as I do then please send me a PM and I'll let you know if you can help my contacting your own congressman.

  5. #5
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    I posted a long message but it was deleted and I don't know why. I posted this article about the inhuman treatment of a cancer patient

    The Other Victims of the Opioid Epidemic June 1, 2017, Glod S.A. N Engl J Med 2017; 376:2101-2102
    http://www.nejm.org/doi/pdf/10.1056/NEJMp1702188

    Since I have a similar problem I contacted my congressman and will take action.

  6. #6
    Administrator Top User ChemoMan's Avatar
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    Quote Originally Posted by PmbPhy View Post
    I posted a long message but it was deleted and I don't know why. I posted this article about the inhuman treatment of a cancer patient

    The Other Victims of the Opioid Epidemic June 1, 2017, Glod S.A. N Engl J Med 2017; 376:2101-2102
    http://www.nejm.org/doi/pdf/10.1056/NEJMp1702188

    Since I have a similar problem I contacted my congressman and will take action.
    Hi

    As a new member all your posts will go into moderation for a period of time. I just approved your posts in this thread and you should see them now. Please wait for your post to be approved rather than reposting.

    Your probation period is very short and in a day or two you will be able to post freely.

    Thanks
    Age 62
    Diffuse Large B cell Lymphoma
    Stage 2a Bulky presentation
    Finished six cycles of R chop 21 26th May 2008
    Officially in remission 9th July 2008
    Remission reconfirmed 1st October 2008
    Remission reconfirmed 17th June 2009
    Remission reconfirmed 7th June 2010
    Remission reconfirmed 6th July 2011

    NED AND DECLARED CURED on the 2/01/2013

    No more scheduled visits to the Prof
    http://cancerforums.net/viewtopic.php?t=9620

    Still alive in 2019 !

    RULE NUMBER 1.....Don't Panic
    RULE NUMBER 2..... Don't forget rule Number 1

    Great moments often catch us unaware-beautifully wrapped in what others may consider a small one.

    I may not have gone where I intended to go,
    but I think I have ended up where I needed to be.

  7. #7
    Well, I guess you have answered my question about what could be worse than dying of leukemia, and seeing as my 40th birthday present was an L4-L5 decomp, I know exactly what you're talking about. You get ruptured disk tissue pressing on the nerve in there, and it can send you into a grand mal seizure that only a knockout dose of Demerol can shut down. I'm a little surprised, however, that you haven't availed yourself of the current microsurgical techniques that can fix you up with just a 1 inch incision. My decomp was in '89, when they made a hole in your back big enough and deep enough to drop a beer can completely into it. My surgeon's nickname was "Fast Eddie", and he was the best guy North of Mayo MN at the time. Luckily, the only incompetent idiot I ever had for a doctor was a podiatrist, and I'll leave it at that. It's too bad you don't live in Louisiana like I do, because there are more ambulance chasing lawyers down here than water moccasins in the swamps, and the bite of the lawyers is MORE poisonous by far! I hope you can find either satisfaction and/or compensation for the idiots you have suffered, or peace from getting beyond all that BS and misery. Go check out the sunsets in the Lounge. That will take your mind someplace else for a few minutes.
    05/6/16 pre-op physical for surgery show low WBC & RBC
    5/22/16 [Birthday] Results of BM biopsy: AML 25% blasts with inv t(3:3) mutation, HIGH risk
    5/30/16 Undergo 3+7 chemo, but it doesn't touch AML, infections nearly kill me. Blasts 65%
    7/04/16 Diagnosis now Refractory AML. [:tombstone:]Six cycles of azacitidine, 21 shots over 7 days w/ 1.5" needle into gut + below navel.
    11/05/16 Move to NOLA - Infusion center 4 minutes away. 15 shots for 5 days with 5/8" 25 ga. needle Huge increase in quality of life.
    12/28/16 BMB shows blasts 12%
    4/16/17 BMB shows CD34 16%, cycles dropped to 4 weeks
    7/20/17 Diagnosis changed to "indolent leukemia", aka MDS
    7/27/17 BMB shows CD34 17%
    8/15/17 Venclexta chemo in PILL form added Onc estimates survival time now 2 - 4 YEARS.
    10/26/17 BMB results show 17/20 metaphases with inv(3:3) mutation-low blood cell counts - transfusions ineffective
    12/4/17 Diagnosis: Uncontrolled refractory AML

  8. #8
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    I did what the spinal cord surgeons suggested. I first had a laminectomy. The surgeon found it encrusted in calcium deposits. That's why the epidurals failed to work. That failed so I had a discectomy. That failed too. Then countless epidural injections all of which failed. I was diagnosed with degenerative disk disease. I tried Neurontin, Tramadol and Lyrica. No relief whatsoever. Only opiates worked. I had a great compassionate doctor for two years and then all of a sudden he left the practice one day with no notice and no reason. Now I'm considering a pain pump because the pain is returning in force.

    Blech!!

  9. #9
    Geez! A 17 year AML survivor, and you can't enjoy that hard won triumph because of a bad back. I don't know if you're old enough to remember this guy, but clearly you must be his half brother.

    https://en.wikipedia.org/wiki/Joe_Btfsplk
    05/6/16 pre-op physical for surgery show low WBC & RBC
    5/22/16 [Birthday] Results of BM biopsy: AML 25% blasts with inv t(3:3) mutation, HIGH risk
    5/30/16 Undergo 3+7 chemo, but it doesn't touch AML, infections nearly kill me. Blasts 65%
    7/04/16 Diagnosis now Refractory AML. [:tombstone:]Six cycles of azacitidine, 21 shots over 7 days w/ 1.5" needle into gut + below navel.
    11/05/16 Move to NOLA - Infusion center 4 minutes away. 15 shots for 5 days with 5/8" 25 ga. needle Huge increase in quality of life.
    12/28/16 BMB shows blasts 12%
    4/16/17 BMB shows CD34 16%, cycles dropped to 4 weeks
    7/20/17 Diagnosis changed to "indolent leukemia", aka MDS
    7/27/17 BMB shows CD34 17%
    8/15/17 Venclexta chemo in PILL form added Onc estimates survival time now 2 - 4 YEARS.
    10/26/17 BMB results show 17/20 metaphases with inv(3:3) mutation-low blood cell counts - transfusions ineffective
    12/4/17 Diagnosis: Uncontrolled refractory AML

  10. #10
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    I don't understand your comment. Was it a joke?

    Note: I'll mention a few things gone wrong medically with me but not nearly all of them. It bothers me to no end wondering why all these extremely unlikely things happen to me. In one case I told someone in a physics forum I had AML. Years later he insulted me, calling me a liar because he thought AML victims don't survive. Then again he's the most evil person that I've ever encountered.

 

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