I was wondering if anyone here has been diagnosed with Chronic lymphocytic leukemia. I've been tested for it and am waiting for results.
I know some of our meds have cancer as a side effect.
Cissy - I am sorry you are having to deal this new development. No, I am not familiar with this condition. I t must be difficult to be waiting on test results such as these. I just wanted to wish you well.
Dandlyon, thank you for your support. Your right in that waiting is hard.
Well , just know that you are in my thoughts and prayers Cissy.
The waiting must be horrible. If its any comfort none of the "cancer causing" PsA drugs cause this one. The fact is the bio we drugs we use are very similar to those used to treat Chronic lymphocytic leukemia. In fact the most commonly used treatment is Rituxan (Rituximab) which is often used to treat RA. Its "sister" is known to us as Remicade.
Thanks tntlamb. That does make me feel better, strange though that may sound. I was feeling like I may have done this to myself by taking all the meds, but at least if the test is positive I will know it's not my fault.
tntlamb said:
The waiting must be horrible. If its any comfort none of the "cancer causing" PsA drugs cause this one. The fact is the bio we drugs we use are very similar to those used to treat Chronic lymphocytic leukemia. In fact the most commonly used treatment is Rituxan (Rituximab) which is often used to treat RA. Its "sister" is known to us as Remicade.
dandlyons said:
Well , just know that you are in my thoughts and prayers Cissy.
Thanks dandlyons, I appreciate that.
Hang in there Cissy. We're all thinking of you. And remember--NONE of this is your fault.
Thank you janeatiu.
janeatiu said:
Hang in there Cissy. We're all thinking of you. And remember--NONE of this is your fault.
UPDATE....Dr called with results....I'm thinking great the waiting is finally over....Results are inconclusive. I'm being referred to a Hematologist for further testing....More waiting....ugg.
oh no....I'm sorry. I am not familiar with it either. I presume it's a possible side effect of one of your meds. I hope it's good news and they don't make you wait too long.
Hang in there....sometimes no news is good news.
What tests have they done Cissy?
Thanks Dini.
Dini said:
oh no....I'm sorry. I am not familiar with it either. I presume it's a possible side effect of one of your meds. I hope it's good news and they don't make you wait too long.
Hang in there....sometimes no news is good news.
First it was a CBC where they saw too many lymphocytes. Then I had Peripheral smears for a B & T surface marker study and another CBC. It is the smears that are inconclusive. Dr says cells not normal, but there is not enough evidence to make a clear diagnosis. I have to call a hematologist tomorrow for further tests.
tntlamb said:
What tests have they done Cissy?
Tntlamb, they did a flow test and now I'm waiting on results from a "fish" test which is a chromosome test.
Sorry I haven't been back in a while. I took a few days to feel sorry for myself. The results were positive. I do have CLL. Waiting to find out which kind. There are basically three kinds, one that is bad from the start, one that starts off slow then turns bad and one that is slow throughout. They can tell which it will be from the markers on the cells. The Dr thinks I have the slow kind which has a prognosis of up to 25 years. The average is 7 years. Now that I am over feeling sorry for myself I have just decided to live my life. Not live my life like I'm dying. Although I do want to do some of the things on my bucket list. Time to quit putting them off.
Treatment right now is watch and wait. Between the blood tests for PsA and now the blood tests for CLL, I'm gonna feel like a pin cushion.
Thanks for all the support.
And a cute pin cushion you will be, Your avatar photo just make me grin. It'll be interesting to see the results of your Fish test. Although nothing about this is funny, it is funny that you came to mind as I was just reading a night or two ago an article by Susan O'Brien, MD who is a fellow at the Anderson Cancer Institute in Houston Texas. This of course is one of the countries leading leukemia centers. I happened on it because I was trying to run down more information on inhibitors of B-cell receptors as some of the newer PsA treatments are going that direction. Low and behold they have two drugs for CLL on phase II trials using that "technology." In any event the fish test really helps match things up.
Its interesting the similarities of the two diseases on the molecular level. I have to wonder why you have CLL at such a young age. Its usually an old peoples disease. My grandpa who also had PsA also had CLL though. He was 72 when he got it, 84 when he passed.
In any event we ALL will be here. If there is anything we or I can help with, lett us know. PLEASE
Tntlamb,
Thank you for the complement. I am 56 almost 57 and they consider that old. Apparently 3% of people over 50 get this. Mostly men and over 60, 6% get it. Although it is known to hit some people as young as 30. It is common for people to have it for years and not know they have it. Many die from something else without ever discovering they have it. Mine was found because of all the blood tests done because of my PsA.
I too noticed the similarities.
Thanks, it helps to know you are all here.
Now for my moment of whining....I TOTALLY don't think it is fair I have both of these! :(
Oh I did think of a question I would like some opinions on. I have two kids still at home. They are juniors in High School. I don't think I should tell them of this new condition. I don't want a cloud hanging over their last couple years of high school and I shouldn't really being showing the signs of real illness for a few years.
I'm being told by many I should tell them.
I welcome all opinions. Will help me weigh what I should do.
tntlamb said:
And a cute pin cushion you will be, Your avatar photo just make me grin. It'll be interesting to see the results of your Fish test. Although nothing about this is funny, it is funny that you came to mind as I was just reading a night or two ago an article by Susan O'Brien, MD who is a fellow at the Anderson Cancer Institute in Houston Texas. This of course is one of the countries leading leukemia centers. I happened on it because I was trying to run down more information on inhibitors of B-cell receptors as some of the newer PsA treatments are going that direction. Low and behold they have two drugs for CLL on phase II trials using that "technology." In any event the fish test really helps match things up.
Its interesting the similarities of the two diseases on the molecular level. I have to wonder why you have CLL at such a young age. Its usually an old peoples disease. My grandpa who also had PsA also had CLL though. He was 72 when he got it, 84 when he passed.
In any event we ALL will be here. If there is anything we or I can help with, lett us know. PLEASE
it is definitely unfair that you have PSA and CLL. Total bummer. I'm really sorry you've one more thing to wrap your head around, Cissy. Good luck as you embark on this new journey.
Thanks Janeatiu.
janeatiu said:
it is definitely unfair that you have PSA and CLL. Total bummer. I'm really sorry you've one more thing to wrap your head around, Cissy. Good luck as you embark on this new journey.
TELL YOUR KIDS.
First of all, I'm sorry you have gotten such dreadful news. I agree with you that it just isn't fair. One disease should be enough for anyone. Can you find a way to give the CLL to your congressman, or some other equally deserving soul?
Now, as to the kids: be honest with them. They are old enough to handle the truth. Secrets don't always keep well, and God forbid they hear it from someone else. My father was diagnosed with a pretty ugly form of cancer right as I was starting college. My parents were not always honest with me about what was happening, and I wish they had been. There were a few decisions I would have made differently, and I think, at least for me, it would have been easier emotionally to feel like I was in the loop. Looking further down the road, wouldn't they be furious to find out that this had been going on for months or years?
With any luck and some good treatment you will dance at their weddings and hold their babies. Don't risk damaging the relationships by being less than honest. High school kids know the score, and they know that life has a dark side- at least mine do. You won't be bursting their bubbles. Give them the chance to show you the people they really are becoming.