cll recently diagnosed

[lindalou5]

Saw an ENT today for enlarged 4+ tonsils. was on watch, but after ENT talked with Hematologist he wants me to start treatment to reduce the tonsils. Has anyone had this, and what type of treatment would it be. thanks

[virdieblue]

Did they tell you what kind of treatment? Is it just to de-bulk your tonsils or for the CLL?

Virginia

[lindalou5 in reply to virdieblue]

did not say what treatment..just that he was going to get them back to normal size

[Hoffy]

Before doing any treatment it is imperative that you get a second Opinion from CLL specialist. My hematologist wanted to do treatment just to do treatment for financial reasons in my opinion .

Also many hematologist are not well educated on the latest targeted therapies .

Your genetic status and your mutational status are important for treatment decisions as well .

The CLL Society web site has a lot of good information that can help you with these decisions !!

Fortunately with CLL decisions to not have to be made very quickly . Usually at this time of year it can be delayed till after the holidays. Also people go for many many years on watch and wait as well .

[lankisterguy Volunteer]

I agree with Hoffy, I also had enlarged tonsils and some blocked Eustation tubes from my CLL, and an ENT wanted to hand it off for immediate treatment. My Hem/Onc CLL expert did not agree.

So take your time to get a CLL expert aboard and get a full CLL workup, this assumes you don't have any life threatening, dangerous or painful side effects from the tonsils.

Let us know where you live so we can recommend some Experts, or use this list:

cllsociety.org/toolbox/cll-...

Len

[lindalou5]

thanks. I live in Minnesota USA and my dad and grandmother and uncle were all patients of the University of Mn Hosp/clinic, so I have an appt set for mid Jan-for second opinion, but if tonsils keep growing larger, something will have to be done sooner. My hema doc graduated from the U of Minn and has a good reputation. My biggest problem is that I have done all my learning about this disease from google/sites because no one else has taken any time to explain crap to me I actually learned my diagnosis from the computer-'My Chart' all test results posted and, the words 'unfavorable prognosis'. I assume due to q11deletion I do not know what any of this means in terms of treatments or real outcome... My father was a rare cll who lived for over 30, but more likely longer-years..had no treatments what-so-ever. When he was 78 his white count was 97000. Super enlarged spleen, tonsils rotted out of his throat long before. he worked a tough outside job and retired at the age of 65. He actually died of heart failure @79, as did his brother. and his mother survived after she had a big dose of mustard gas, and lived ten more years to the age of 89. They are written up in the University books of study on cll. something special about their chromosones.