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Thread: ALL Leukemia Hope

  1. #1
    Regular User
    Join Date
    May 2017

    ALL Leukemia Hope

    Thought I did post here maybe not, at the beginning off Dec 2016 I was diagnosed with ALL Leukemia Philadelphia Positive. My bone marrow was 90% Leukemia cells and I was told I had 3 months to live without a stem cell transplant.

    Well I was put into the hospital right away and started the chemo IVs that same day. I was blessed to have my sister and older brother be an exact stem cell match and Feb 22, 2017 I received a stem cell transplant. It has been a long road 12 months since I was first diagnosed and numerous blood and other transfusions and chemo treatments.

    But do not give up my Leukemia has been inactive now for at least six months and still is so there is hope for us all hang in there. My doctor said not that many years ago there would have been no hope for me so thank God for the researchers that have come up with these new treatments.

    I will not go into what I have been through you all know just wanted to post that do not give up you can beat this disease.

    My cancer was caused by Agent range and exposure to Camp Jejune contaminated drinking water I was already a 100% disabled veteran for many years and this was one of the presumptive diseases the VA was doing nothing for me told me they would not pay for my treatment. So if you are a veteran file a claim right away and get a service officer ASAP to file that claim and fast track it.

    I was lucky and have private health insurance or I would not be typing this now. Just a heads up if you are a veterans and get one of the presumptive diseases you need to file a VA claim ASAP.

    You all take care God Bless and keep on fighting never give up.

  2. #2
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    You did post! Here: https://www.cancerforums.net/threads...y-on-the-block
    I can merge the threads if you like.
    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
    Regular User
    Join Date
    May 2017
    Update still taking the Nilotinib and anti rejection medicine, approaching my second birthday will be Feb 22, 2019. My cancer DR let us come south in our RV for 3 months this winter. So we are on the Gulf of Mexico in Rockport Texas. Has been a warmer than normal winter here happy to report.
    Have a cancer DR checkup and blood work April 8th so we will have to leave here to travel back to PA around March 31st.

    Hoping all is good for the April 8, 2019 checkup. My doctor said we will talk about trying to stop my Nilotinib then sure hope I can get off this it is taking a toll on my body. Scary though to stop taking it.

    I have had two lower back surgeries and was being scheduled for a 3rd to fuse some vertebrates in my lower spine when they discovered my ALL. Sad to say my lower back is not doing good at all may have to see someone when we get back to PA.

    Anyway on about day 715 or so looking forward to my second birthday coming up in 14 days. For those being treated for cancer hang in there and take one day at a time may God Bless us all.

  4. #4
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Ah, back surgeries. Ugh. I have been able to avoid a 3rd surgery or fusion, and that is fine with me. Was a little busy elsewhere, as you have most certainly been. Are there any blast cells in your bloodwork? If not, I can see why doctor is considering weaning you off of the Nilotinib. By the same token, there are most likely new treatments of promising clinical trials that you can also consider - if needed. Hope is one of the theological virtues. You are a great example of that. Thanks for keeping us updated and don't be a stranger! Lots of ALL patients look to your case for inspiration.

  5. #5
    Regular User
    Join Date
    May 2017
    Well been awhile since I last checked in, took my grand kids to Disney World stayed at Shades of Green a Department of Defense resort on Disney property. Hope I gave the grand kids something to remember me by.

    Day 874 for me, ALL Phil + still inactive, the nilotinib is getting to me the DR wants me to stay on it 3 years now so have about seven more months. Had some chest pain awhile back so the Oncologist sent me for a cat scan of my heart shows allot of pack build up but no blockages one at 40%. However I guess in my one lung I have 4 modules on my lymph nodes. Only talked to the family doctor so far went to see him about my bad neck pain and he brought the cat scan of my heart up.
    He said I should talk to my Oncologist ASAP about the nodules. I do know one think the Tsaigna can cause Lymphoma so sure hope it is not that. Guess I will find out my family doctor wants me to get another cat scan in 3 months unless my cancer doctor wants to do something else sooner will call his nurse Monday and ask her about the cat scan results if they ever got them.

    But enjoying life as much as possible been fishing allot, still never had my lower back of cervical spinal fusions done.

    My Leukemia was caused by my Agent Orange and Camp Lejune contaminated drinking water exposure. Those two can also cause Lymphoma but if it is that has to be from the Tasigna.

    Hope everyone is doing as good as possible hang in there. Semper fi

  6. #6
    Super Moderator Top User po18guy's Avatar
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    Feb 2012
    Great to hear from you - even if the news is less than stellar. You have to be alive to have complaints, right? Once you are long-term, it is good to think back to your diagnosis and see just how much better things have turned out than you might have originally thought. Good to have you here. Good to hear from you. Let us know how the future checkups go.
    Last edited by po18guy; 07-22-2019 at 12:54 AM.

  7. #7
    Regular User
    Join Date
    May 2017
    Thanks going to call my Oncologist of 2.5 years tomorrow morning and ask his nurse about the 4 modules they discovered in my lung, naturally is has me concerned hope I do not have more elsewhere will let you know what my Oncologist at the Hershey Cancer Institute says about it probably will just have to let his nurse a message that is how it usually works.

  8. #8
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    I have had various lung nodules over the years and I most likely have several right now - having just completed 5 weeks of pneumonia. All of the previous nodules resolved on their own.
    Last edited by po18guy; 07-25-2019 at 05:28 AM. Reason: Clarity/typos

  9. #9
    Experienced User
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    Dec 2017
    I hope you both are doing better.

    Brucecav , I hope you enjoyed Disney. You were about and hour and a half from us.

  10. #10
    Regular User
    Join Date
    May 2017
    Sorry been awhile since I have checked in. Thanks we did enjoy Disney World hope I gave my kids and grand kids something to remember me by. Well today is Day 1034 for me and I am still ticking. Still taking the Tisigna Nilotinib not sure how long I will keep taking this doctor said two years then three years so not sure whet he will say when the three years is up.

    Still taking the anti-rejection medicine twice a day with I could get off that.

    The Nilotinib has been trashing my heart on heart medication now I am sure they will want to scope my heart soon they think I may need a stent or two. Also developing Nodules and some swollen limp noes in my right lung they are keeping an eye on that. I do remember my kidneys shut down after taking the Sprycell for about 6 months they thought I had phenomena but then found water was building up outside my lungs and leaking into the lungs made it look like phenomena. The kidneys got back to working when they stopped the Sprycell that is when I started taking the Nilotinib.

    Anyway guess I am doing good as can be expected, I think my Oncologist is thinking of stopping my Nilotinib because of my heart. Will be 3 years Feb 22, 2020 the wife a retired nurse was reading sounds like if they stop the Kinsey inhibitor there will be a 50/50 chance of the Leukemia returning.

    So life goes on next blood work around the end of December then next big step is the three year mark will see what happens then.

    So for all those fighting this disease life goes on keep the faith and take one day at a time.

    My brother that donated the stem cells to me Navy Chief David is not doing good we went to visit him last week his brain has cleared up pretty good but he has problems getting around. Since we were south in the RV we stopped at Charleston SC stayed on the USAF base RV park it was nice and toured Charleston. Now the RV is parked stuck here this winter with the cancer treatment.

    Come April 15th will take the RV back to Raystown Lake for the spring, summer and fall and more fishing.

    Stay safe and God Bless you all. Semper fi


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