9 replies to this topic

[dede5]

I posted something awhile back about this, but have an update (kind of). I was diagnosed with CML four years ago. Was in accelerated stage and having lots of symptoms. There was never any question about it, once I saw my doctor. Last November, I was tested for CLL and the test came back negative. I assumed that was the end of it, but lymph level has been steadily climbing since then. It was 6.92 at last visit. Onc tells me we are now keeping an eye on it. Don't know if it's too early to detect, or what, since it's just routine labs, instead of having something concrete. The not knowing is really weighing on me right now, but nothing I can do until we see where it leads. 

[Trey]

Sprycel can increase lymph count:

 

"Dasatinib, a broad-spectrum tyrosine kinase inhibitor (TKI), predominantly targets BCR-ABL and SRC oncoproteins and also inhibits off-target kinases, which may result in unexpected drug responses. We identified 22 patients with marked lymphoproliferation in blood while on dasatinib therapy........In conclusion, we show that marked clonal expansion of cytotoxic LGL [lymph] cells seemed to be in a significant proportion of dasatinib treated patients."

http://www.nature.co...leu200946a.html

 

What caused the suspicion of CLL previously?  If it was only the lymph count, your docs should read about how Sprycel increases lymph counts.

[dede5]

That's it as far as I know. Do you know if the increased lymph can affect immunity, or is that a non-issue in such cases? I know I should've asked the doc, but this caught me by surprise and I didn't think of it until later.

[Trey]

Sprycel can increase the numbers of lymph NK cells which may increase their effectiveness in doing their job.  This could possibly include attacking leukemic WBCs which may explain why Sprycel works well.  After it is withdrawn the effect on NK cells is also removed.   

 

http://www.ncbi.nlm....pubmed/23108877

[dede5]

Thank you for the info and the links. I know I need to get more info from him, but I've been blind sided both times and couldn't think of any questions. I'll have something specific to ask him about now. 

[Cathy]

Hi,

 

I am on Sprycel and have been for about 4 years I think now. My lymph counts started to increase pretty early on and have increased to quit a bit but my onc knows Sprcel does this, he did test me once a year or so ago for CLL but it came back negative and he just is watching it they stay up kind of high in my book . I have not had problems with infections either.

 

Wish you the best of luck! Try not to worry too much I know that is so hard to do.

 

Cathy

[dede5]

Hi,

 

I am on Sprycel and have been for about 4 years I think now. My lymph counts started to increase pretty early on and have increased to quit a bit but my onc knows Sprcel does this, he did test me once a year or so ago for CLL but it came back negative and he just is watching it they stay up kind of high in my book . I have not had problems with infections either.

 

Wish you the best of luck! Try not to worry too much I know that is so hard to do.

 

Cathy

Hi Cathy, can you tell me about what your lymph count is now? Is it about like mine (6.92) or does it go much higher than that? Just wondering what to expect. Thanks for telling me your story.

[Cathy]

Hi, I only get tested every 3 months finally now so I'm sorry I don't remember I can look and let you know tomorrow as long as I remember to look . I'm going today to get tested and it takes about a week to come back. i will definietly let you know.

 

I really think its okay it's just how sprycel works.

 

Cathy

[Cathy]

Hi I checked and looks like mine is at 3.22 so not as high as your at mine bounces around
Try not to worry I'm sure your onc will keep an I on this
Take care

[dede5]

Thank you for checking and for letting me know. Also for the pep talks. I really appreciate it