What can I expect from my appointment with hematologist

[Nick2121]

My primary doctor says I have cll... I'm going to the appointment with the expectation that I do

I don't have any real symptoms with the exception of occasional slight fatigue....of which can be confusing...as in is it cll or normal tiredness

My blood work is good except for the wbc 17100

And lymphocytes 11953

I had a follow up blood test 8 days later wbc 17500 and lymphocytes 12338

I'm looking forward to being a wait and watch...not keen on treatment....if it gets to the treatment stage I won't hesitate

But overall just curious what will happen with first appointment

Thanks Nick

[DriedSeaweed]

My experience was to get further blood tests done to get a peek at what characteristics my particular version of cll had.

Even though it may seem early I would start hunting around for a cll specialist to establish a relationship with.

If you are in the USA and near dc perhaps consider this observational protocol. Free consult with CLL researchers. clinicalstudies.info.nih.go...

[Nick2121 in reply to DriedSeaweed]

I'm in Florida

[DriedSeaweed in reply to Nick2121]

cllsociety.org/toolbox/cll-...

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.

[TimHB]

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.

[Nick2121 in reply to TimHB]

Ok thanks I will do that...ok wow... thanks

[Newdawn Administrator in reply to TimHB]

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.

I’m sure it will go well. Let us know.

Best wishes,

Newdawn

[GMa27]

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.

[lankisterguy Volunteer]

Hi Nick,

Look for the box on this page labeled "Related Posts", (its in the upper right column on computer screens and way below on mobile devices). They include many previous answers to the same question.

-

Related Posts

*Follow up from asking what to expect from today's appointment with Dr. Wierda

*Back from the hematologist, counts slowly rising.

*What can I expect this time round.

*CLL/SLL, what to expect?

*Very bad day, can anyone explain what my ATM status means?

Len

[tedrog]

read the recent thread: High CLL IN BONE MARROW

...without knowing anything about your case: no symptoms, no treatment.

ps you probably should have the FISH and Cytometry tests... then my comment.

[Paddycakes0413]

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!

[Sickequestrian]

Hi, Nick!

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.

Good luck!

[Nick2121 in reply to Sickequestrian]

I'm in Polk county

[SeymourB in reply to Nick2121]

Nick -

The CLL Society has support groups in Central Florida (Tampa) and a new one in Orlando.

cllsociety.org/event/centra...

cllsociety.org/event/orland...

=seymour=

[1962jns in reply to Sickequestrian]

What about Mayo Clinic