Currently with AML, the same treatment has been used for 40 years! it's 7+3, inpatient. 7 days, 24 hours a day of one chemo intravenously and then 3 days of injection of another (Cytarabine & Idarubacin) Then it's followed up by consolidation which is monthly of 5 days inpatient of chemo. Only larger hospitals treat AML, so keep that in mind. I had an allo/donor transplant. My sister was my donor and was a perfect match. I've had very little GVHD, except for my eyes which is very blurry.double vision quite often. About to see the opth about restasis. Recuperation from the allo transplant is hard as you become a bubble girl/guy for a long time. The difference with allo SCT/BMT is the chemo is pretty harsh and then the usage of tacrolimus (transplant - immunesupprent drugs) I can no longer go into the sun without full coverage - forever. No more pink cheeks, whatsoever. There are many other restrictions as well. Fungal infections are a big risk. So, I'm still on a host of prophylactic medications. Considering it all, I'm doing well - had pneumonia once. Neurapathy and fatigue are never ending.
I wanted to talk to you about MDS. Should it turn to AML, it can be a bit aggressive. AML is only treated at specific larger hospitals inpatient. So, it's not treated at a local chemo center. So, you may want to think about good teaching hospitals in your area or MD Anderson should you ever need to go that route. It seems that many MDS patients on the forums are using Vidaza and it is helping them a lot. I pray you never need a transplant. The chemo was very potent, enough to kill the entire bone marrow. I don't think they use alto for MDS turn AML. Just keep in mind the symptoms I had before I was diagnosed was serious hip and leg pain, breathlessness, fatigue, bleeding gums, and flu’ish feelings. But, the hip-leg pain was so unusual that it will catch you off guard. Almost all AML patients seem to get it - at least the ones on the forum.
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.