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To: HollyB

My Father was also diagnosed with Non Hodgkins Lymphoma ten years ago at age 82. It was about a Month after my CLL Diagnosis. The Doctor tried t figure a link between my Father and I, but both of us had no Genetic Markers. It was just a bizarre coincidence being 30 years apart in age.

My Father did one Round of Chemo, four days, four times and that was it. He is 93 now and for all intents and purposes he is Cured of the Disease.

We get a good chuckle out of it because my Father was a raging Alcoholic for 60 Years. He quit drinking cold turkey at age 79 after my Mother passed away. It got worse before it got better. At 93 he is the oldest guy in his AA Group.

I’m happy to hear that your Mother got through it. Hopefully she will mirror my Father’s success. He never even thinks about having Lymphoma and he sees the Oncologist once a Year for a Checkup. So far so good.

As far as my situation, I live in four Month increments, one Doctor Appointment to the next. That’s as far as I plan anything nowadays. When my Immune System collapsed last year it took me by surprise. I never get sick, no fever, nothing. I have been asymptomatic since my Diagnosis which makes my Oncologist shake his head in disbelief. No Lymph Node issues and my Spleen is fine The only issue has been Enemia and right now my Hemoglobin Count is the highest it’s been since my Diagnosis. Not normal, but very close.

A guy I used to work with was Diagnosed with AML. He was in and out of the Hospital for about a Year and he almost bought it two times.

They only found out he was sick when he collapsed at the Daughter’s 9th Birthday Party. Up to that point he had no idea he was sick. He was a really active guy, hiking, outdoor sports, motorcycles, the works.

Thanks for the info on your Treatment. If I need to go that route it will probably be at UCLA. I went to see them after the MDS popped up. I went to Cedars Sinai when I was first Diagnosed with CLL, but this last time they sent me to see an Oncologist at UCLA who is awesome. He is Mr. BMT and he told me he will only do it when there is no other Options.

We really didn’t discuss the BMT process since I am a work in progress, but I left there feeling that whatever we end up doing will be successful.

After all this time I just go with the flow. I told my Doctor that I’m an Actor on the Stage and he is the Writer and Director. He tells me where to stand and what lines to say and them we go on to the next Act..

Of course everything is subject to revision with Leukemia.

I will pray for your continued good health. You have run the Gauntlet and you are still standing, congratulations.

As I like to say, any day above ground is a good day.

I just found out a childhood Friend of mine Passed Away a day ago. My other close childhood friend died last year. Neither of them made it to 62. I figured I would be the first to go in the group when I was Diagnosed ten years ago. Instead, I’m the last man standing. Life is surprising.


321 posted on 08/07/2016 8:42:55 PM PDT by Kickass Conservative (Hillary Clinton has killed four more People than Three Mile Island.)
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To: Kickass Conservative

Usually what would cause a person to collapse from AML is being very anemic. I needed 3 bags of blood and a bag of platelets when I was finally diagnosed. The symptoms come on quick (within weeks). I have a feeling he was feeling pretty tired, but just chalked it up daily stress. I wrote off all my symptoms as that. I had just started a 3 AM shift, so I thought I was super tired from working terrible hours. My breathlessness - I thought the smoking finally caught up with me! (no I don’t smoke any longer - the first month in the hospital put an end to that!). Gums - time to see the dentist. It was my first time having low back pain that sent me to the doctor who did an MRI and the MRI showed my entire marrow was saturated with hemetolgical changes. That started the ball rolling with blood tests, etc.

But, yea, I think that your ex-coworker just wrote off the symptoms as everyday stuff, which most of us do - until it shuts us down. Not good at that point - our organs need blood. Without any aggressive mutations, one normally does just chemo and an allo BMT is not recommended. Good for him! Life would have been so much easier without a BMT. I could have moved on to a somewhat normal life by now. I could have gone back to my old job, had a vacation laying in the sun right now. It wasn’t the chemo, but the allo BMT that changed my life.

I’m glad you have a positive outlook, as you should! Especially if you trust your medical team. Mine - they are short of walking on water : ) On another note that just popped in my head - while getting treatment, I was looking at some of the nurses that had some extra weight. How I envied them as I knew I’d be losing a ton and realized just how important it was to have a reserve. I’ll no longer complain if I have an extra 10 on me again! So, eat up! lol

Doctors say AML is usually environmental, ie, benzenes, being around heavy duty radiation. Or it can be caused by strong chemo used for other cancers.

I didn’t have a genetic marker that caused the AML, however, the AML caused the FLT3 gene to take on a huge life form of its own. That is the aggressive gene that would usher in a relapse, hense my continual chemo which doubles as a flt3 inhibitor.

Keep that great spirit of yours. You’re feeling good it sounds like. You’re in a good place. Looking forward to getting there in more than spurts.


322 posted on 08/08/2016 6:19:28 AM PDT by HollyB
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