While I only post from time to time, I do read my HealthUnlocked almost as soon as I get the notification in my inbox and so I know there are amazing people on here, full of compassion and knowledge, hence I wanted to post and get your advise on the following:
So, I am 17p delete on W&W but the w&w is now more by me and not so much by my specialist, who recommends I should start treatment!
Well, somewhere- somehow I have become a bit of a "treatment phobe" because I've come to view treatment as the equivalent of getting on a Rollercoaster ride that "doesn't end well". Which I know is crazy because things do get better, (at least for a period of time) and obviously no treating will not "end well" either and a lot sooner.
Maybe is not that I fear treatment as much as I thought things had to look a lot worse, including the numbers which don't quite seem "horrible" just yet; just to mention a couple-- wbc=70's plt=106, hgb=11.0
When I was diagnosed (Jan this yr) I started with a wbc of around 34 (so I guess it has already doubled at 10 mos) but it spiked to 50 by March and stayed 50' for 3 month, then 60's for another 3 and now 70's.
My neck, armpit and groin ache from the lymphnodes but they're really not big at all. The ones I can feel are on my neck but they feel like they're pea size.
The mornings are difficult to get going and do feel tired during the day, but on quite a few days I might not even take a nap...(which I know can be a big accomplishment for some us, right?--lol)!
I have not gotten a cold since not sure when, I am however, experiencing some palpitations, abdominal-digestive pain and having difficulty maintainig weight due to said pain, which I dont know if its the gallbladder, an ulcer or what, but it has me eating less, cutting down on fats, dairy, meats, juices, sodas, etc, which, had I been overweight, it would've been perfect but not so much since I was already thin.
My Doctor says that the above will improve with treatment, but I also wonder if just finding/treating the digestive issue could be good enough because obviously, I would recover my weight, feel better and perhaps go a little longer w/o cll treatment??
So not sure what to do, are there specific numbers I should be looking more closely?
I hope I'm not being unfair but I think my Specialist doesn't like to give bad news; well, I say that because I found out I had the 17p mutation only after I asked him for the characteristics of my cll, so maybe I need to keep asking more questions as to why he feeIs I should start treatment, because he doesn't seem emphatic about it either (?), maybe it's just the doubling of the #'s ??
A while back I read some article (don't have the reference), where it said treating early could be a plus, especially for mutated cll?
Don't really expect for anybody to tell me to do treatment or not, since we're not Doctors (most of us, anyway), but maybe just thoughts, info, points of view, similar treatment fears, etc.
Anyway, sorry for the long-winded post and thank you all in advance for your reply.