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Old 12-16-2023, 09:13 AM   #1
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Leukemia update (ALL) phil+ with a rare variant

Well been 6 years now since I was diagnosed with my ALL. Stopped taking my daily chemo pill some 5.5 years ago now. My Acute Leukemia is still inactive happy to report. Still do have many issues from my almost 6 years of Leukemia treatment but I am still alive and inactive. Still get blood work every 4 or 5 months to make sure no Leukemia cells are detected, guess for the rest of my life. Enjoying every day one at a time happy to say we are snowbirds again this winter in Aransas Pass Texas now by the Gulf and trying to surf fish now and then. Stay safe and never give up Semper fi
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Old 12-16-2023, 09:21 AM   #2
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So sorry to hear about your struggle, but thanks for the uplifting story, brought tears to my eyes. Wife and I are mid 70s, struggling with some issues but nothing like you have gone through, good luck moving forward.
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Old 12-16-2023, 10:00 AM   #3
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Well been 6 years now since I was diagnosed with my ALL. Stopped taking my daily chemo pill some 5.5 years ago now. My Acute Leukemia is still inactive happy to report. Still do have many issues from my almost 6 years of Leukemia treatment but I am still alive and inactive. Still get blood work every 4 or 5 months to make sure no Leukemia cells are detected, guess for the rest of my life. Enjoying every day one at a time happy to say we are snowbirds again this winter in Aransas Pass Texas now by the Gulf and trying to surf fish now and then. Stay safe and never give up Semper fi
Your post depicts the only good things about life threatening diseases and that is how you view life and live it one day at a time. Good luck and I look forward to hearing from you at your 10 year anniversary.
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Old 12-18-2023, 01:42 PM   #4
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Bruce, you are an inspiration to many of us.

When you posted news of truck troubles recently, I thought, geez that's a lot to deal with but you handled it with grace. I suppose what you went through with your illness has something to do with that.

I too look forward to hearing of more of your adventures. Best of luck to you.
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Old 04-06-2024, 11:24 PM   #5
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Well Easter Sunday was in church passed out the DW called an ambulance they took me to The Hershey Medical Center. After blood work they admitted me as my (ALL) Acute Leukemia was back positive. Was there 7 days old cells count still going up. Almost even to my new stem cells I had that transplant Feb 22, 2018.
They had to send my last blood work part of it to a lab in California where they can tell the exact form of Leukemia I have. Mine is the worst one can get a rare form of ALL Phil + with a rare variant. This can take 4 to 10 days to get back.
Hoping it turns out to be the same forum of Leukemia. After 7 days in the hospital toey discharged me Saturday. Monday I start back 3 times a week an out patient.
They did not want to wait so started my on the same chemo pills again I took daily for almost 6 years and then stopped about 15 months ago.
Worst case my Leukemia type has mutated then they have to start from scratch again. As of my discharge 45 % of my old cells were back and 55 percent are the new cells I received at my stem cell transplant Feb 22, 2018.
As of now I am taking Tisigna Nilotinib 600 MG daily and 120 MG of a steroid daily. And about 8 other pills, taking such a huge amount of steroids I can't sleep have to take that daily for a month. The chemo pill the rest of my life unless I get switched to something else because my Leukemia has mutated.
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Old 04-07-2024, 06:45 AM   #6
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We're praying for you. Right now I'm going thru treatment for CLL (Chronic Lymphatic Leukemia). I know what you mean about the pills, my counter looks like a pharmacy. Keeping you in our prayers.
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Old 04-07-2024, 08:02 AM   #7
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We're praying for you. Right now I'm going thru treatment for CLL (Chronic Lymphatic Leukemia). I know what you mean about the pills, my counter looks like a pharmacy. Keeping you in our prayers.
Wow, hang in there both, Bruce and Bill. Prayers for you and your families. Wish you nothing but the best and recovering health.
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Old 04-07-2024, 10:09 AM   #8
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Many prayers for you Bruce.
Wishing you a quick turn around and hoping you're back out fishing on Raystown Lake before long.
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Old 04-28-2024, 06:21 AM   #9
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Well been going outpatient every other day, blood work still crazy white blood cell count very low along with other counts. Good news is since starting my daily Tisigna Nilotinib chemo pill daily my Leukemia cells are down 75% already. My oncologist said though my ALL is very crazy and does not act as it usually does. So they are monitoring me very closely. I go back Wed for more blood work hoping things are still improving as my RV and Boat at Raystown Lake are calling out to me time to be fishing.
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Old 05-11-2024, 05:32 AM   #10
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Well still going to the Hershey Cancer Institute for my ALL treatment. It is still active they have started me on daily twice a day chemo pills again. These stopped it before so hoping they get is inactive again time will tell.
My blood work some is ok some not main issue still have some Leukemia cells in my blood. Will keep taking the medicine and hoping in the mean time I am going fishing at Raystown Lake again have an RV and boat up there.
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Old 05-11-2024, 06:52 AM   #11
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My prayers are with you.
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Old 05-11-2024, 10:19 AM   #12
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Well still going to the Hershey Cancer Institute for my ALL treatment. It is still active they have started me on daily twice a day chemo pills again. These stopped it before so hoping they get is inactive again time will tell.
My blood work some is ok some not main issue still have some Leukemia cells in my blood. Will keep taking the medicine and hoping in the mean time I am going fishing at Raystown Lake again have an RV and boat up there.
Thinking about you Marine. Just attended a state fly fishing bootcamp yesterday and got my first fishing license since I was in Marines. Now I just need some gear. Never realized how expensive fly fishing is! Hope fishing at Raystown Lake is good for you.
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Old 05-11-2024, 10:56 AM   #13
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Bruce, keep the faith! A friend had (has) stage 3B lung cancer and has come out clean for the past 2 years.
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