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Thread: Aml Refractory No More Chemo

  1. #11
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Sorry to hear this. Was the drug Fludarabine?

  2. #12
    Regular User
    Join Date
    Jan 2018
    Firstly Po18guy I must say I thought you were just a moderator here, until I read your signature. You have been through a lot my friend, hats off to your tremendous battle.

    I would like to update. My last post they were thinking about doing that regimen I talked about with the drug that started with an F. However they decided against it due to heart fluid, which turns out to be why my heart looked so much bigger, it was fluid not prior chemo thank the lord.

    Anyhow I had started a clinical trial in UCLA for a oral medicine but it started killing off my red blood cells and platelets so fast that they ended up stopping it. I later went back to ER due to Chest back pain and low grade fevers. (Post Above) A Doctor at a hospital in my home town said looks like pneumonia and wanted to admit me, I hurry signed out and fled back to my Oncology Doctors at UCLA. Later it was determined I have over a litter of fluid on my heart and some around my lungs. So they drained that. They were looking into treating my leukemia as last time I was there they pretty much said the only thing they have is the one clinical trail, which was the Oral one that I jumped on but it failed, well I guess I failed cause my counts dropped and it had to be stopped. So I sat there and my Leukemia Blast have been rising up to 61% my white blood cells went from a steady 2.5 to around 80k so they started me on Hydroxyurea. Well they were trying to come up with a plan. I was looking at another hospital close by for a clinical trial the hospital is called City Of Hope. They had one so UCLA said well we can do the same trial here, only difference is they can get you to stem cell transplant a tad faster if it works than we can. So I decided to transfer to this new Hospital.

    So I got here and like I said I was still in pain for the Pericarditis Effusion and the drainage. Plus the Rapid WBC was causing me terrible Anxiety. So I started this treatment on a drug called AMG 330, it's an IV Chemo that is infused 24 hours a day. They start off at a 10 Mic dose for 5 or so days, the increase it to a 60 Mic dose for a week then ultimately in my case to a full dose of 240, so it go's 10 - 60- 240 haha pretty big jump. What this drug does or is designed to do is attach to CD33 Protein and attaches or uses the T-Cell then attaches to T-Cell to the Leukemic cell, thus destroying the Leukemic cell. Which causes the cell to burst open dumping all it's lovely toxic junk into your system which in return can cause a host of other problems.

    Well I started it made it past the 10 Mic dose no problem, few days into the 60 Mic dose I started having heavy Brain Fog, weird hard time thinking and almost delusional or detached. Then i got this bad Rash that was all over my arms, groin back and legs and feet. I woke up one night Dizzy, light headed, super nauseated, It was pitch black in my room, I had to vomit I grabbed a Water bucket liner puked in it at the same time had real bad urge to have a bowl movement, so I tried to unplug the pump from the wall, stand up cause I was so Dizzy and try to make it to the restroom, which I made it but not fast enough Talk about embarrassing. All the nurse came in after me pulling the the call string. They cleaned me up got me to the bed and took vitals, my blood pressure was Low 70/40, hence the dizziness and confusion. They were all in my room I was going in and out of conscious and kept hearing them say sir you ok waking me, your blood pressure is low, they started Iv's all kinds of stuff and Finally sent me to ICU after about three days there I was stable.

    I was doing good they were still running drug in me cause they cant stop drug but only twice, then trail is over. So I was doing good, until one morning after breakfast I started having this bad chest pain and back pain that radiated through shoulder blades into chest. It was a 8 or 9 on pain scale. I was on dilaudid iv 1.3 mg every 3 hours already and it wasn't phasing this pain. Then out of no where nurse gave me a Tylenol Iv, so Benadryl iv for preop for platelet transfusion and some how this pain just subsided. They then decided to move me ot of ICU back to normal rooms. I was happy I finally would get that shower I so badly needed. I got to my new room and was feeling great I ordered a dinner and protein Chocolate Peanut butter shake which are amazing. Well I drank about a quarter of it cause it was so frozen thats all I could get. I started to rest and out of no where this chest pain came back a 10 on pain scale. There was no getting it to feel better, I tried every position I could think of to ease this pain and it was at night and of course Doctors are limited at night. So I'm on this Dalaudid and its not doing anything, they even put me on morphine 2mg with it and nothing, I'm thinking heart attack I begged for a doctor to come and test and told them I can't handle this it is unbearable, in my mind I'm thinking nothing is working for this pain is this it whats going out they are running EKG and labs and everything is saying no heart attack so On call Doctor is just having stuff ordered and its not working worse experience in my life. Then finally a Doctor shows up and listens to my heart and can't find a cause, they send me for CT Scan with Contrast. Comes back possible clot in lung small clot. but inflamed Sac around heart. They ended up giving me a Steroid and it stopped the pain. As they can't under any circumstances give me any Anti Inflammatory Drugs due to my platelets and bleeding risk. So now i'm on a PCA Drip which I never have ever been on and it's great. My doctor came in and told me though that Study Drug Team decided to pull the plug on the Trail and stop the drug. So there went another clinical trial gone. My Doctor here had a Plan B already and so we are going that route.

    I looked back over post I had later read where Dead Man Walking had mentioned a drug called Venetoclax. This is the next Plan B for me Venetoxlax with decitabine 10 days, instead of 5 day. My doctor is trying to use this as a bridge to get me to SCT. I'm very hopeful that this works and I leave it to the lord. I'm Sorry for such a long post but lately I've became a Night Owl it's 4:20AM as I write this during a platelet transfusion. I feel so good at night with the pain meds and Hot Tea, I'm wide awake, which you think it would do the opposite. I can think so much clearer at night. I feel real good weight, my appetite and everything no Pain ( Knock On Wood ). I'm very thankful that I found this forum and I enjoy hearing for you guys. So if you have any advice or any input please respond because I like logging on here and following you guys and reading all the good information you provide. I'll try to give an update ASAP.

  3. #13
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Yikes! That is quite an ordeal! But what doesn't kill you strengthens you, right? You have a heavy cross to bear, but you also have an excellent example to follow this week in particular. Great decision to run for your life from admission to a local hospital. Last I heard, City of hope has the best stats for transplant patients, so that is very good news. They will probably have to nuke you with some sort of heavy-duty transplant prep drug regimen, but it is short term, so the cumulative toxicity is acceptable. They infuse it at about 10X normal dosing, but only over 2-3 days.

    The thinking is that no leukemic cells could survive such a chemical onslaught, since the malignant white cells live only 3-4 hours, with the rest of your cells, having longer lives, doing better. Sounds rough, and it is, but it is survivable. Controlling that pericardial effusion is key, if they have a handle on that, as it was certainly not helping in the slightest. Thank you very much for checking back in, as it is good to have the update.

    Most of us here are patients of eiither the cancer related to the forum we moderate, or another cancer. There is a wealth of experience here, and you are contributing to it.
    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.

  4. #14
    Regular User
    Join Date
    Jan 2018
    Update. Just wanted to give a quick update. I went to City Of Hope as you all know who read this thread. After Radiation Strong Chemo and a Stem Cell Trans plant from my older brother 10 + 10 match. I'm finally in remission for the first time ever!! I'm so happy, I am still my Doctors Highest patient for relapse. Due to me having Residual disease when doing stem cell transplant. However fact is it's day 70+ and still doing good, thank God! thank City Of Hope, Thank this Website for all the support I've gotten from it and from other sharing. My counts platelets have finally started coming up, hemoglobin as well. Last bone marrow showed no disease.

    I just want to let everyone know that AML and all disease is bad but never give up and when I mean give up I mean listen to anyone tell you that your cancer is too strong and believe that garbage. I really feel that it should be illegal for a Doctor to tell someone that there Cancer is too strong. That right there kill's a lot of people, people go down hill fast when they hear crap like that. Don't believe it!, God can cure you, all you have to do is believe and know in your heart that you are ridding this out. Even when it is so bad and blood counts are non existent without transfusion after transfusions. Ride it out with the Lord and talk to him everyday and tell him, tell him that no matter what you love him, thank him and will always serve him. He will bring you back from your suffering with a whole new outlook on life. You will learn that nothing in this world is worth anything except family and God.

    If anyone anywhere ever needs someone to talk to or anything you can message me and also contact me. I know what it's like and every time I goto the Doctors and have Bone Marrow test done I'm scared! I pray to the Lord and I tell him he's in control, it's scary, hard, painful and the Fight is real and long. However it's all worth the experience you gain and the eye opening lessons you receive. Cancer will show you how you are suppose to be living your life, it will teach you what is worth more than Gold in this world, it will teach you how to treat others and you will find a whole new respect for all the things you took for granted prior. God Bless everyone who is in the Fight and to those who came out on top give support to your brothers and sisters who are still working their way there!
    You can follow my fight with AML leukemia at link below.


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