Off Topic, but can i ask a medical question here on this forum?

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hemi71x

hemi71x

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I have been diagnosed with a bone marrow, white blood cell, mutation, cancer, disease, (whatever we want to call it) for about five years now.
Not going to bore you with the scientific name, but it's been given the designation JAK 2 from the scientist, that discovered the mutation that's it's named after.
It's a very rare disease, but i can't give you a number about how many of us out there in the nation have it.
Anyway, i would like to find out who else has this "issue" to ask a few question in regards to this problem.
There is a member on this forum that's also dealing with this problem, and i would like to hook up with you if that's possible.
Pretty sure it's one of our moderators, telling me has it to.
If upon reading this, and see my question, can you get in touch with me through a PM, or write me at my e mail address hemi71x@aol.com
Thank's a lot.
Jim V.
hemi71x
 
hemi71x said:
I have been diagnosed with a bone marrow, white blood cell, mutation, cancer, disease, (whatever we want to call it) for about five years now.
Not going to bore you with the scientific name, but it's been given the designation JAK 2 from the scientist, that discovered the mutation that's it's named after.
It's a very rare disease, but i can't give you a number about how many of us out there in the nation have it.
Anyway, i would like to find out who else has this "issue" to ask a few question in regards to this problem.
There is a member on this forum that's also dealing with this problem, and i would like to hook up with you if that's possible.
Pretty sure it's one of our moderators, telling me has it to.
If upon reading this, and see my question, can you get in touch with me through a PM, or write me at my e mail address hemi71x@aol.com
Thank's a lot.
Jim V.
hemi71x
Click to expand...
I think it would be ok. I think @memike was diagnosed. I put Jak 2 in the search box and came up with some posts. Search Results for Query: jak 2 | For A Bodies Only Mopar Forum
 
That is me, and yes I to am a JAK 2 person .. I was born on a USAF base and from what I have seen most of us are.. I have returned a PM to you @hemi71x
 
I'm also dealing with blood cancer , not your rare type but an acute leukemia . Also 68 yo so I'm not freaking out about it . AND have Melanoma on top of that , sooooooo… :wtf: ! I'm accepting each day for what it is...Tim McGraw said it..

 
In my case it may never happen to me, but if my body decides to mutate this cancer further, it develops into leukemia, or bone cancer, or both.
Your right, what can you do?
Hematologist, and oncologist, doctors tell me it's "controllable" with a medication, but it's not curable.
Been dealt a deck of cards, in this life on top of planet Earth, and just have to deal with it, day by day, and see what happens.
Jim V.
hemi71x
 
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Wish you guys well. I "*****" about my body pain and other issues, but there is nothing worse than cancer, "fixable" or not. My Mom and both aunts have had breast cancer to some degree. Lost a cousin about 26 to Leukemia, and his nephew only made it to 19 years old, fought all his short life. Lost a sister in early 50's to brain cancer.
 
Yes, us veterans have been exposed to some nasty stuff over the years, Agent Orange and other toxic chemicals. I remember back in the day cleaning weapons in solvent with our bare hands. Wonder what that chemical contained? Got doused with FRH (hydraulic fluid) inside the turret of an Mi when a cylinder seal let go. Checked the MSDS and it stated it will cause cancer. Don't sit here and dwell on it. If the big "C" happens it happens. Not much one can do other that accepts the treatment and drive on. Feel your pain brother. Keep your head held high and drive on..
 
Ya, chemical exposure.
I think back and wonder if that has lots to do with my "issues"?
When i was a kid, i started working in a tool manufacturing company, that used all kinds of nasty solvents in cleaning up the manufactured parts.
I remember a nasty cleaning solvent they had us use on the wash rack, cleaning the F-4 Phantom's on a regular maintenance schedule.
Plus 30 years in the auto mechanic field, being around every nasty fume, vapor, chemical, that you can think of.
And back then, we were never trained, told, in wearing gloves, respirators, masks, safety equipment, in doing your job.
So, who knows, if all that is a contributing factor in developing cancer issues.
Doctors can't prove it, for certain, and i certainly can't, either.
What a catch 22.
 
Not sure what you have, or if it is similar, but I have Thrombocytosis. Also a mutation that produces too many platelets. I take a chemo drug for it, and so far after about 5 years, everything seems to be fine. I was also told that although rare, it could turn into leukemia. I guess I'm a realist, as I take my meds, see my hematologist every 3 months, and don't worry about it. I told my Dr. all I ask is, he try to keep me around long enough to watch my grandkids grow up.
 
'73red-duster said:
Not sure what you have, or if it is similar, but I have Thrombocytosis. Also a mutation that produces too many platelets. I take a chemo drug for it, and so far after about 5 years, everything seems to be fine. I was also told that although rare, it could turn into leukemia. I guess I'm a realist, as I take my meds, see my hematologist every 3 months, and don't worry about it. I told my Dr. all I ask is, he try to keep me around long enough to watch my grandkids grow up.
Click to expand...

Ya, platelets, white blood cells, and red blood cells, ALL have to be in an acceptable number to be NORMAL inside the human body.
In the beginning with my medication, (it's a form of chemotherapy, in pill form) the doc was experimenting with the dosage to get all three of the numbers within acceptable numbers.
Mine has to do with way to many white blood cells being produced all the time.
The mutation doesn't tell the body to stop producing white blood cells.
In the beginning, the machines that analyze blood, would go thru the roof, off the charts, wouldn't go high enough, getting my results, on the graph, in the computer.
I too have to be monitored every three months, to find out how I'm doin.
 
Yep, sounds similar. Took a while to get the dosage regulated, but I've been on the same dose now for at least 4 years. Doc told me to take 1 Monday through Friday, and 2 on Saturday and Sunday, and have a few beers. Mostly, he told me to consider it an inconvenience, and don't worry about it. I can do that.
 
'73red-duster said:
Yep, sounds similar. Took a while to get the dosage regulated, but I've been on the same dose now for at least 4 years. Doc told me to take 1 Monday through Friday, and 2 on Saturday and Sunday, and have a few beers. Mostly, he told me to consider it an inconvenience, and don't worry about it. I can do that.
Click to expand...
I alternate one a day, then two a day, all the time. 500mg, then 1,000mg.
 
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