If you scroll down there are some listed under FL to look into. Perhaps at your appointment ask if he/she has experience with any of them CLL Society is a good place to get started learning.
A hematological-oncologist is not enough, you need to see a CLL specialist. Your hem-onc should help you research who would be best for your needs and provide the referrals. My hem-onc was wonderful at explaining to me how complicated a CLL diagnosis can be and the importance of building a team. He referred me to 3 specialists and I got on a plane and went (Columbus, Boston, San Diego). Then he consulted all three for consensus on diagnosis and treatment options. The result was refining my diagnosis from Stage 0 watch & wait to Stage II, unmutated, and in need of urgent treatment. Thanks to my hem-onc's willingness to provide referrals, I got into a clinical trial that's probably saved my life. Consult the CLL Society website for a list of specialists. They can even arrange for Skype consultations if you're unable to travel. And if you do have to travel, the American Cancer Society has a lodging program that helps with discounted hotel rooms.
I think it has to be accepted that your experience isn’t entirely the norm Tim. It certainly bears no relation to the treatment I’ve had or has been available for me to access in the NHS. How many of our CLL’ers actually manage to ‘build a team’ and can access a number of CLL specialists across the length of the country? It’s the ideal but not the reality though I fully embrace the notion that we should seek the best advice available to us. Amazingly, in some cases, this can be served perfectly well by a competent haematologist at the local hospital especially in the early stages when we are asymtomatic and stable.
Nick, you are at a very low level presently and there’s pretty much a surety that you’ll be put on W&W or active monitoring which describes its purpose. Your haematologist will look at baselines and is interested in following trends not snapshots. In the States, you’ll probably have much more detailed prognostics done than we have in the U.K. including a FISH test. This is cytogenetic testing which will give an indication of your particular ‘risk bucket’. How you feel and any symptoms are as important as the numbers.
Your haematologist will probably examine you to see if any enlarged nodes are detectable including palpating your spleen. It will be your chance to ask questions and hopefully build up a rapport. You may wish to consult with a CLL specialist though I’m only now seeing one 6 yrs post diagnosis. However, the system is different here.
This will seem like a major event to you but to the haematologist it’s just starting what could be a very very long monitoring process and he may not see the situation as anything more than routine at this stage. I’m saying this because sometimes new members feel disappointed that the Consultant didn’t acknowledge what a big deal it is to us.
Ask for copies of your blood results, take someone with you to catch what you miss and make a list of questions if you have any. In particular ask who you can consult if you have issues or problems.
My GP sent me to hematologist oncologist when he saw my WBC went to 10.4. He saw it was slowly climbing over the prior 5 years and the fact that my dad had CLL. He was spot on but it wasn't until I got FISH/Flow and BMB that my oncologist was convinced I had CLL. I had been taking a prescription that could elevate WBC. But my marrow was crowded. I had no symptoms. Felt wonderful. Was on W&W 12 years. A year ago nodes popped up. When treatment was mentioned at my oncologist suggestion, I went to Moffitt Cancer Center in Tampa (4 hrs from me) to have tests repeated. I just finished 3 rounds of FCR and am in remission. Please see a CLL expert or a hematologist oncologist. Your GP is not the one to follow you along this journey. It's not his/her specialty.
Hopefully you will be on W&W a long time. Get second opinion.
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My first meeting was very matter of fact, blood work was done. He look over everything and then told me I have CLL stage 0, get my flu shot and come back in 6 minutes months. That's it! My family doc is my go to for questions and I had lots. But find yourself a CLL specialist and see them at least once. So if when your WBC starts to go high you have a good specialist to see. I'm in Michigan, so I go to University of Ohio,
MD ANDERSON in Texas is world renowned. Good Luck and God Bless!
Where in Fla do you live? I'm in Palm Beach County. I was recently diagnosed by a hematologist/oncologist at Cleveland Clinic. He proceeded to run a lot of blood tests and recently had my cancer staged. Next week I'm having a bone marrow sample taken. I have found this particular dr to be arrogant and incompetent. Still, I got some useful testing done. There are no cll specialists in my area. I plan on going to MDAnderson for my care next month.
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