CLL Support Association
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Hello from Michigan

Hi everyone. My nam is Pam. I was diagnosed a year ago at age 70. My doctors assure me I will probably die of old age before CLL.

My first year, as you can imagine, was spent trying to research this and come to terms with the diagnosis. I felt like I had a time bomb in my body just waiting to detonate!

Finding this group has been a God send. Your postings and open conversations make me feel so not alone.

Thank you.

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Welcome, you're in the right place. take care-bill

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Hello and welcome to the group. I am new here, but find it very informative and re-assuring. I was diagnosed two years ago at 54 and have been in stage zero since then. Hopefully your progresses slowly like mine...:)

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Hi Pam,, welcome and hope your doctor is right for all of us!

Milton Keynes Marc

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Welcome to this group which really cushioned me when i was dx one year ago.

Can u share the reasons for your doctor to comment that u may never need any treatment. I am in india where i could not find a cll specialist. Two onco's have two diffrent assessment. One thinks i may need early treatment while other feels that i am unlikely to need any treatment for 5 years...

I understand that as of date, we have no scientific way to predict cll progression.

vinnet

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Actually both oncologist I met with said the same thing. My numbers continue to deteriorate but I'm told I'm still a long way from treatment. My only complaints are fatigue and hot flashes. I think if you can get copies of all your test you'll be able to follow it a little better. Best of luck.

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Thanks migirl.

I have all the copies of my test results. Flocytometry etc.

Every three months they get cbc done. WBC, RBC and platelete counts are being monitored. My next test is next week.That will b my first anniversary.

How can I get CLL specialist'sopinion? I have made dietry and lifestyle changes with hope that they may reduce my cll progression.

best wishes

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I met with my oncologist yesterday. She may want to start treatment the 1st of the year. My lymph nodes have gone a little crazy and the fatigue is wearing me down. My WBC went from 31 to 51 so their keeping an eye on that. Always something 😊

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Dear vinnet,

When my husband's

White blood cells doubled within a six month period, his Oncologist began a 6 month treatment protocol.

That put him in remission for 3 and a half years.

Wishing you the best

Farrpottery

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thanks Farrpottery.

I learnt from neil that base value be at least 30? Mine howers around 22. Three months ago it went to 18. My three monthly next blood work is due next week.

best wishes

vinnet

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Good luck next week.

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Thanks migirl.

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No one can ever tell us we will die of old age. Much too blasé prediction for my money.

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Greetings Migirlusa, I too am from Michigan. I just had a lymph node pathology report come back to say it is consistent with CLL/SLL. Waiting for my first consult with the hematologist/oncologist ... don’t really know what to expect. Can I ask where you went in Michigan for your consults? I’m going to the University of Michigan, and would like alternatives (perhaps for second opinions). Thanks. Hope you're doing well.

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Greetings Eliz19 I am in Lansing. I go to Red Cedar Oncology. Last January I was in San Diego. I went for a second opinion at UCSD with Dr. Choi. He is a very well known CLL specialist. I also went to see Dr. Malek at UofM when I returned to MI. He agreed with Dr. Choi. Ohio State in Columbus is a great place for second opinions.

Let me know if you would like to meet up for a coffee sometime.

Pam

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