As I've posted here before I was diagnosed in Dec of 2014. Lymph nodes the size of golf balls and that was every single one in my body. W and W until May if 2016 when nodes had grown by another 50%.
Began Imbruvica in July of 2016...within a week my lymph nodes were nearly back to normal size. I experienced almost no side effects other than the dry cracked finger tips and more recently weight gain.
As if my last blood work and oncologist visit this past Wednesday I'm happy to report by Red Blood count and Hemiglobin are " normal " ( not normal for a person with CLL but normal person normal) and my platelet count is 113 ( acceptable for a CLL person)
Too early to discuss reduced dosage much less remission but I'm a mighty happy dude right now.
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RJR1
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Congrats! (I started Imbruvica last June, and still have one annoying lump in my neck, which might just be "scar tissue." My blood levels went up, up, up for four and a half months, but are steadily returning to normal....though still a ways to go for a normal normal person who's normal!)
Glad to heard treatment worked out for you. I was just wondering if you had contacted the largest blood cancer organization in the world, the Leukemia & Lymphoma Society. They are on line and you can check them out simply by adding .org to their name. They offer a lot of Information and help with blood cancers. Just find the information specialist portion and chat with them. They provide a lot of services Oncologist, nurses, videos, financing help, support groups and etc. I'm a volunteer for them as well as having CLL Myself. I was diagnosed in 2011 and am now 69yrs. Old. Hope I've helped.
Just a quick comment about the LLS site.... googled it...found it...opened it....first thing up " Request for Donation"... nothing about it or anything just " send money"
Did it again through another link to their official site...same thing " Ask for money"....
I Sorry about not finding information for Leukemia & Lymphoma Society with out the donation. It's my fault. But here is what to do.
Type in lls.org
After that chose patients & caregivers. After a menu comes up choose what you want to know more about.
Again sorry for the mistake. You should find everything I told you about. There are disease info support services and education resources. You'll find information specialist under support resources. Any questions I can answer just send me a Private Message (PM):
Good news always welcome especially for the newly diagnosed who need to hear some positive news. Thanks for lightening the day by sharing your brilliant news RJR1.
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