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Hello to both Dbledutchs and chitrick. I can't speak for anyone else, but I tried to reply yesterday... I'd only logged on for the first time on 12/03. I started typing a reply at home, having first viewed the site while on break at work, but I had left my password there, and couldn't post. Dbledutchs, I know that you feel very scared, but take comfort in chitrick's words.
If your doctor has noted a measurable abnormality in your blood counts over a period of time, at least you
aren't facing the urgency that's encountered with the more aggressive cancers. I admit that Chronic forms of Leukemia are not my area of personal knowledge. Its always seemed to me that the very fact people can live a lifestyle like the one chitrick describes (in which monitoring his wife's CLL has become so routine) underscores that such people have enough longevity to profit from the rapid pace of medical breakthroughs.
We live in an age when amazing new treatments are becoming available with a frequency unrivaled in the past. And ever-increasing knowledge of human genomes
and DNA hold, in my humble opinion, great hope for the eradication of cancers like these, perhaps very soon!
Chitrick, I can't really speak to your situation and questions all that much, as I am a suvivor of AML, about as different a disease from your wife's as a cancer could be and still have the "L" in common. Mine
was "Acute" (which was once summed up for me as being
"easier to cure...if it doesn't kill you first") and "Mylogenous". I was diagnosed in October, and I was told at one point that if I hadn't come in when I did, it was unlikely I would have seen Christmas.
Thats what I meant when I said "aggressive". And I didn't even look all that sick, really. I think you can probably see where I picked up that nick-name/ pen-name of "BloodPhoenix", the meaning of which should be pretty clear. While I once could have told you all those various blood counts you quoted, and remember having daily CBC tests run in the hospital, I've long since forgotten them (I was diagnosed in '93) I only remember that a routine test to check the blood level of my anti-seizure medicine happened to catch extremely low platelet counts. At first they thought it was a mistake at the lab. So they called me at work and had me go to a nearby office to repeat the test. When they got the results, I received a second call: immediately leave work and check myself into the hospital, and don't get into any accidents on the way. Why? I asked,
naively. And was told something to the effect that my blood had the clotting properties of water. At first, they connected my odd blood counts to my Epilepsy meds - like most anti-convulsants, Depakote was known to have a side effect of "bone-marrow suppression". But an aspiration soon revealed my marrow was clogged with immature white cells - blasts. And that was when my life turned into a whirlwind.
About the only thing I can offer you Chitrick, is a possible insight into the achiness you mentioned. Before my diagnosis, I had believed for a long time that I simply had a nasty flu, partly because of generalized muscle and joint aches, along with fatigue. But your description of your wife's situation brought back memmories of my initial return from the hospital. The transition from a hospital bed was not kind to me. At home we had an old futon which was both hard as a rock and lumpy. I can recall distinctly the feeling that every one of my bones was a seperate, discernible ache. I was so desperately tired, but could not sleep on that bed. I was miserable. What I finally did was lined up pillows, a soft robe, and a comforter to produce a sort of mound I could lie atop and sink softly into. Had it not been for that, I would never have slept a wink. I wasn't home even ten days, and when I went back in for my second round of heavy-duty in-patient chemotherapy, I was actually relieved to return to the hospital. Before it was done, I had three
rounds like that: I would be given about five days of chemo, then spend the rest of a month in the hospital suffering the after effects, and trying to fight off opportunistic infections. Have I got some stories.
Marie Francis, do not feel alone. IMO, one of the most helpful things in dealing with any cancer is to find a support group of others who are facing it. (most cancer patients share many common experiences even though their particular ailments may vary). In effect though, thats what you've already done by posting on here. This is a support group. But the face to face human contact has its own qualities to recommend it. Also, do not lose your sense of humor. Try to make yourself laugh,
and attempt to keep your eyes open to the ridiculous nature of some of the situations you'll find yourself in (even though at times you may want to both laugh and cry). I'm sure you've heard the old adage "There are no atheists in foxholes". That analogy always seemed appropriate to me. If you're diagnosed with cancer, you become a soldier in a war of Life vs. Death, with your body as the battleground. And YOU, are going
to WIN. So following that old adage, it doesn't matter whether you haven't attended church in 15 years, or whatever. I'm no evangelist, but God is real, and he hears prayers. I know my survival hinged upon that, because I pleasantly surprised my oncologist. He knew how effective the chemo could be, and he expected me to be one of the patients that breaks his heart - the ones that he loses. (He didn't confess that to me until much later). So include prayer in your treatment plan
like any other medicine. But all of this is assuming you even HAVE cancer, which from my understanding has not yet been confirmed? Hang in there Dbledutchs, you're going to be alright. And I promise that I will try to reply to both your posts if I have anything to offer.





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