Hi all I was just recently diagnosed with stage 0 CLL. My oncologist has suggested watch and wait as opposed treatment. My numbers are low and I am feeling ok so no real need to jump into any treatment. My question is should I be looking for a doctor specializing in CLL or is my current Oncologist fin? If a specialist is needed how would I go about finding one? Thank you all for posting your stories it has made me delete a lot better after my diagnosis.
Are all oncologists CLL specialists? - CLL Support
It would be great to know your country and nearest city.
CLL specialst are usually involed in clinical trials and or CLL research, in large hospitals often attached to universitiy medical schools, atleast in the U.S....other countries may have different situations.
Two studies in the past five years show that patients under the care of CLL specialists as a group, have a longer over survival...
For all patients, OS was superior for patients cared for by CLL hematologists(10.5 years vs. 8.4 years; p=0.001). Physician’s disease-specific expertise remained an independent predictor of OS
Canadian study a few months ago
Not every patient needs to be under specialist care in the beginning, but high risk patients perhaps do. Certainly all patients should see a specialist prior to treatment for a second opinion. Specialist will work with your local doctor on an ongoing basis.
Haematologist are blood cancer and lymphoma doctors, and CLL patients are generally better served under their care.
Oncologists tend to be cancer generalists, and their main focus is not on blood, but rather a wide variety of solid tumor cancers... many only see a few cases of CLL in their careers.
Ultimately, you want a good match with your doctor as well.
Here is s list of patient recommend CLL doctors... these lists are a starting point, and are not in any way all inclusive.
My experience with hematologist/oncologists has been both good and bad... really depends on their interest in hematology and specifically CLL.
My previous hematologist/oncologist literally save my life through a very complex Richter's transformation...
Our relationship, established over years, became paramount.
There is a specialist in Dublin, I believe... he has been doing clinical trials for new inhibitors...
Even in the U.S. many patients need to travel, sometimes across the country to see a top tier specialist.
Here is a link
Welcome to the group. While it sucks to have CLL, I think you will find this a great site with a lot of good advice by people that are in the same boat. AussieNeil has a link to a site with many CLL specialists. I am checking in on my phone or I would post it. I would definitely see a CLL specialist, I personally would probably wait till I were more symptomatic. You may be on watch and wait for years and a lot will be changing in the coming years. If it will not cost you a lot or want the peace of mind you could see one earlier. You may want to see one if you have any other major health problems.
There are many new treatments available now and in trial that are doing wonders. Stay away from Dr google, and only look at legit sites. If in doubt ask here..... I hope yiu have many years of watch and wait......
The link to the Google document that Chris published above lists the same specialists as the link I've previously provided. There are two major CLL specialist lists - one of specialists recommended by CLL ACOR list members (warning - the recommendation may just because the patient felt well cared for and had a good relationship with the specialist) and the other is a list of US based doctors recommended by Dr Jeff Sharman:
I think Dr. Mohammed Farooqui is now with Merck in the Phialdelphia Area! He is on your CLL specialist list.....I read about his leaving NIH on cllforum.
Vizinni wrote "Dr. Farooqui told me a couple of month ago he was leaving, at my last visit. He asked me not to say anything until he had a chance to tell his long term patients."
Anyhow....I will be at NIH Sept 14th for BMB and CT Scan. I am Nervous as date approaches......... I will find out for sure if he left, as he saw me on my first visit last March.
You've got a big day coming up. Please let us know how you go.
If you are able to confirm Dr Farooqui is now with Merck, the process of updating the specialist list is to join the CLL ACOR list server then send an email advising the updated specialist's location. One of the list admins will then update their specialist list:
Hi WaitingPatiently...... I too am on Watch and Wait for nearly two years. I see a CLL specialist (Dr. Byrd at OSU) one time per year. At my first visit I asked for second opinion and received a lot of tests that one would get at a research hospital. The tests and follow up discussions really accelerated my understanding.
For me... collecting my Prognostic Indicators as discussed in the web link below helped. This website is "pre-inhibitor medication" (Ibrutinib, etc) so reading it you might think you have 8 years to live. Ignore that! Also might want to know where your body is with regards to Immunoglobulins.... IgG, IgM, IgA.
The other part of CLL is infections due to low Immunoglobulins and deactivated T cell functionality. Work on your immune system understanding. This was my approach and there is differing opinions as to the value the information provides. But I say it helps with my sanity.
Prognostic Indicators! Are you in Bucket A, Bucket B, Bucket C
Get these tests done: FISH, β2M, IgVH (Mutated or Unmutated), CD38, ZAP-70.
I was just like you. Dx in March, watch and wait, I hesitated going to a CLL specialist because I liked my Onc/Hem doctor and all the specialists were "out of town". I am a "people pleaser" by nature, and didn't want to hurt his feelings. But, I finally gave in and went to a CLL specialist. The specialist I saw is on the ACOR list and I like him a lot. He gave me the normal check up, looked at all the tests my local guy had done, and ordered a couple of prognostic tests that had not been done. My neutrophils and antibodies are extremely low and my local Onc/Hem had said he would check with my insurance company about doing immunoglobulin therapy. After 2 months I had not heard anything about this. Next visit with him was to be Nov. The specialist set up the therapy for me to start Sept 21. I asked him about whether the insurance company would have a problem with it and he said no, with my numbers and his recommendation it would be approved. This in and of itself is a good reason to see a specialist, especially here in the US with the insurance companies being so picky now. Hope you can find one close to you in Montana, or at least not too far away. Mine is an hour and a half away in Charlotte, NC, but my adult son and his family live 25 minutes away from the doctor, so I can crash there if I ever need to.
I definitely think it would be worthwhile to see the specialist.
I made an appointment with a CLL specialist a week after the CLL diagnosis from a hem-onc. With some specialists it can take months before your appointment. Mine took 2 months before I could see him, but the same specialist usually takes 4 months. I lucked out with 2 months because of a cancellation. It was worth the wait and I was able to educate myself through the links mentioned on here. My CLL specialist is a 3 1/2 hour drive in good weather, but since I am in W & W I only see him once per year after all the initial testing he performed. I see a local hem-onc he recommended for more frequent monitoring and blood work. If something seems off I will not be treated by the hem-onc but by the CLL specialist. Anyways, that is how mine is set up, and I have a great comfort level with CLL because I am ready for fast action by being an established patient with the specialist.
I go to a group that had doctors that specialize in cancer and blood disorders. ohcare.com/ I see Dr. Paula Weisenberger who is a very wise and common sense doctor. She sent me to Dr. Bird at Ohio State because she wanted me to meet with him because he is one of the head researchers in CLL. she said she knows a lot about CLL but there are always new treatments and advancements that she might not be aware of. So the best with who you find. I'm finding out that word of mouth gives the best recommendations