I was just diagnosed with Stage 0 CLL. I'm in the "Watch & Worry" stage - my dad died of complications from CLL in 1999; if I didnt know what he went through, I probably wouldnt be so stressed over this. I know treatments have really advanced since then. The Hematologist who ordered my Flow test is not a specialist in CLL; for my own peace of mind, I feel I really need someone who is due to my family history. One of my friend's needed a specialist for an issue and she was able to do a telehealth appointment with someone. I'm in Albany, NY. Does anyone have any recommendations for CLL Specialists in my vicinity or has anyone used this telehealth option with a Specialist? Any advice would be very much appreciated. I would prefer someone in Upstate NY or in CT.
Looking for CLL specialist: I was just diagnosed... - CLL Support
Looking for CLL specialist
Hi Van Gogh:
Welcome aboard. I’m sorry you are joining us but rest assured treatments have significantly improved since your father died from the disease in 1999. I’d suggest Dr Lamanna in NYC. She is known for her knowledge and kindness, a combination that is sometimes difficult to find in CLL experts and doctors in general. I’d also suggest that you avail yourself of the CLL Society’s expert access option found here: cllsociety.org/programs-and.... This is an amazing program offered free of charge to patients like you in the US who are seeking a second opinion. This program is delivered remotely so it may be exactly what you are seeking. Finally, if you want to take an easy 3 hour drive to Boston, I highly recommend Dana Farber. Dr Brown and Dr Davids are excellent.
Best,
Mark
I want to join HopeME in his suggestions. As your case seems to warrant it, if you are bound to your locality, see if the cancer center in your area is associated with a leading cancer specialist.
My doctor handles about a 50% load of CLL, but will be the first to admit they are not specialists. However, The large cancer centers often reach out to other areas and create partnerships making your local cancer center an affiliate. My doctor explained to me that they do the "watching" while we are "waiting" but when it comes time for treatment they are ready for consultation, supervision, or a direct hand off to the specialist. One other piece of advice my doctor gave, was to wait for treatment time for that free consult, why waste a free consult with a specialist on a diagnosis.
A lot of this will depend on your particular flavor of CLL, I have a plain vanilla type. Yet, if you have some problematic markers this could alter your choices. I'm just sharing an idea that may relieve some of the tension so you look for options that work for you. My hopes are with you. 🙂
Spark_Plug - I think you are so right. I was happy with my hematologist after diagnosed and put on W & W. However, my disease progressed very rapidly, entered my central nervous system and now causes some neurological issues. I have had several 2nd, 3rd & 4th opinions and value the CLL Specialists input the most. And although he is in a different group than my other oncology doctors, he's collaborating and following my case closely.
Hi VanGoghLvr0401,
I agree with HopeME
Many CLL patients in locations like yours will use a CLL expert in New York City and travel to see them initially and have a local hematologist for routine exams and testing, sending those to the expert's offices, via electronic record systems like EPIC.
The CLL expert knowledge is used primarily when and if treatment is needed, but those decisions are only needed every few years, and after an initial in person appointment with the expert, most of the consulting can be done by video visits. It helps if your CLL expert is in the same state so licensing is not a hindrance.
We have at least 4 different hospital systems in NYC with CLL experts see: cllsociety.org/newly-diagno...
Len
my recommendation is to find a hematologist. There are so many advances in medicine now. Or look into a raw fruit veggie diet no meat and sour sop. Works wonders🙏
Could you elaborate on this raw fruit/veggie diet, please? Sour Soup?
While most Canadians tend to have their Cll treated in Canada, I have heard several positive mentions in my Toronto Cll support group of the University of Rochester Medical Center as a good place to get a second opinion. While it might be much farther, it may be much easier to get to. Certainly worth investigating or asking others in this group who are being treated there
Good luck and try not to worry so much (from someone who did not have much to look forward to 10 years ago and now has normal blood numbers)
Yup...new Yorker here and Rochester is my recommendation
Wondering who you see in Rochester?
Hi VanGoghLvr - I too was just diagnosed (SLL), am a woman, and had a father that had CLL. Just wanted to say 'hi'. Nothing new to add here as I am still reeling from my own recent diagnosis.
We are in the same boat. How long ago was your dad diagnosed? I keep hearing how treatment is so different now but it's tough not to dwell on how sick he was over the years. It was a huge trigger for me. I keep thinking how he was essentially bedridden for his later years due to neuropathy in his legs/feet. My sister keeps telling me to stay positive!!!
Like you and ellencapecod, I had a parent, my mother, who had CLL and died from complications of it in 2003. She had it for many years, and I recall how she needed frequent naps, though no neuropathy. She always maintained a positive attitude for her children and friends, so when she announced that she only had 6 weeks to live it was truly devastating . When I was diagnosed with CLL at the age of 60, my mind immediately went to my mother and how the disease got the best of her. Little did I know at that time that the developments in CLL treatments were going to ease the burden of this cancer for so many of us. About three years into my watch and wait my doctor, a hematologist, told me that he thought I might be eligible to a newly approved medication, Ibrutinib, that you take once a day. He also arranged a consultation with a specialist from DanaFarber. Three years later, I started taking Ibrutinib, and it was truly a miracle. Since then, there are other immunotherapy medications that have been developed that are remarkably effective in treating CLL. Once you connect with a hematologist and/or CLL specialist (and this group has provided some excellent suggestions) I hope your mind will be eased by the treatment options your father didn’t have back in the 1990s. Listen to your sister!
I saw your post and read how your dad was bedridden due to neuropathy in his legs/feet. Do you know if the CLL or treatments caused the neuropathy? I am very curious because I have been suffering from terrible neuropathy in both feet/legs. I live in an apartment and must take my trash outdoors to a dumpster. It is a real chore for me to do that simple task. I fall off the sidewalk several times. I walk crooked even though I concentrate on trying to walk straight and am huffing and a puffing until I get back to my apartment. In addition, I have lymphedema in the left leg. Swelling is much better, but skin is dark brown and strange texture, with ulcers and the right leg is beginning to get discolored. I had dopplers done and there were no vascular issues. I can't seem to get a cause from anyone, nor do they seemed concerned. I must be very careful not to develop cellulitis. I haven't worn socks for over two years. I literally cannot reach my feet to put them on. I do have scoliosis in T4, so maybe that has an affect. I do NOT have a CLL specialist, but reading all these posts, I think it might be a good idea for me to find one. I have terrible fatigue and terrible night sweats. WE know our bodies and WE know when our bodies are NOT OUR bodies....too many changes. I am so thankful for this group and am so glad I joined. Thank you everyone!
I am in South Jersey, Burlington County....Mt. Laurel, NJ. IF anyone knows a good CLL specialist, can you PLEASE let me know. Thank you so much.
We never learned what caused it. I am convinced it was the result of a medication he was prescribed because he was fine and then within several days of taking that he was having difficulties. The Drs took him off of it. I don't remember the name of it right now but neuropathy was a side effect. He also was on Prednisone long term which affected his blood sugar and ended up with diabetes - both of which can cause stinging neuropathy in limbs/feet. He did not have lymphedema. He had multiple health issues, was a WW2 vet and career military so unfortunately I can't say for sure what the ultimate cause was.
Have you tried using one or better yet two walking sticks or canes to help steady yourself when walking? It also can help strengthen your arm muscles. Just a thought.
I will give that a try. Thank you for your suggestion.
My father had CLL for about 15 years and was diagnosed when he was about 70. He died of Alzeheimers at 94, almost 95. He just went to an oncologist annually for bloodwork. I recall seeing his bruised forearms which I believe was related to CLL. But that was about it.
Hello. I just wanted to say, I'm sorry about your father and that you had to join us here. On the brighter side, treatments have advanced. We LIVE with this disease. I was barely 62 when diagnosed. Yesterday, my labs reveal still slow growing cll. Mentally, watch and wait is cruel if you let it be. Everyday is yours to make what you want of it. Educate yourself as much as possible. Allow yourself space to mentally cope with the waves of emotions. It's normal to grieve this change in life. We are all here for each other. I'm glad you found us. Hugs!
Hello. I was diagnosed with CLL seven years ago and have been a lucky patient of Dr Nicole Lamanna for about five of those years. She's quite brilliant, one of the best in her field. And also happens to be one of the nicest people you could wish to meet. A win win. It's very important - I believe - to find a CLL specialist ASAP, and you couldn't find any better than Dr Lamanna I promise you. If you have any specific questions about contacting her team at Columbia Presbyterian I'm happy to help in any way I can. Good luck and Happy New Year!
As someone else mentioned, Dr. Nicole Lamanna is a CLL specialist. She is at Columbia / NY Presbyterian which is in upper Manhattan, so coming from Albany you wouldn't have to drive into the more congested part of NYC. Hopefully after the first few visits your appointments can be spread out to limit the number of trips.
I also see Dr Lamanna in NYC. I’m about 40 minutes south of Albany NY. She is a Gem. She’s brilliant , accessible and deeply committed to her patients. It would be a long day but very worth it.
I don’t know of any specialists in Albany area.
I’d rec you consider NYC or Boston
I live on Long Island so distance to the many CLL specialists in Manhattan is not as big a trip as it would be for you. I sought out Dr. Adam Kittai and have only met with him once, and was very pleased with his approach He is now in regular consultation with my primary hematologist, Neuro-oncologist and neuro-ophthalmologist. He is weighing in on my case as the CLL specialist and I do think it is essential to have a CLL specialist on your team. Once you get on the CLL Society's website and search NYS, you will see one CLL specialist in Ithaca and one in Rochester. All the rest of the NYS list are NYC or LI. There is one listed at Yale in New Haven as well and many in Boston (as alternative). Everyone in my local LI Support Group raves about Dr Lamanna. I think having a specialist on your team will give you peace of mind.
Google tells me there is an Albany Cancer Center that has doctors who list “leukemia” as a specialty but not CLL. You could combine a local doctor with a CLL Specialist.
We live in Western Mass and my husband‘s doctor is at Dana Farber (he was not comfortable with the local hematologist/oncologist). During treatment we often would stay at a hotel the night before, especially in the winter. Given the distance of your top-notch choices (west, east, south), you have to consider your driving sweet-spot
I think if we lived where you do, we would choose Dr. Lamanna. After your initial visit, you you might be able to have local blood draws and virtual visits.
Good luck.
Good morning and Happy New Year to all -
I just wanted to echo what everyone has already said.. I was diagnosed 7 years ago, but in the mid-west seemed hard to find a good CLL specialist. I got an appointment with Dr. Lamanna, sent all my records to her and did a zoom call appointment. It was very reassuring to have her go through things and give me some good medical advice, suggesting some additional tests my doc hadn't even thought of and never mentioned. If you're in NY - that is where I'd go, I think she's the best.. I did find a good hematologist - and continue to be on W&W.. I think initially - we all react differently - but when the doc told me nothing they could do now and best to just W&W - I had to do something to feel like I was trying.. I got back into running - exercising and try to do a couple 5K's with my kids every year...
I wish all of you the best in 2025 - and hope that CLL is just a little bump in the road for you - in your journey thru life...
I want to put in a plug for the community oncologist. I have CLL that transformed to DLBCL, not clonally related. This transformation is rare. Today both my CLL and DLBCL are in remission and have been for 26 months. CLL will return. Hopefully, the DLBCL is gone for good. While in treatment, an oncology nurse told me my doctor regularly consults with specialists, at other institutions, to assure she has diagnosed and is treating a patient correctly. This was very reassuring to me. I can’t think of a more challenging job than a community oncologist. Just think of all the varieties of cancer. I do not live in an area that allows easy access to a university cancer center. Since my doctor checked with an expert for me, I did not have to worry about finding an expert and I benefited from treatment in my community. You might check with your oncologist to to see if she is in contact with experts at other institutions. Mine was and I was the beneficiary.
My mom also had CLL and passed in 2000. My brother was diagnosed with CLL a month before my mother passed. He was treated with Chlorambicil and had a very tough time. There are so many new treatments today. I’ve achieved uMRD after fixed duration of V/O. It is worth the effort to find a specialist.
A warm 👋 to you, VanGoghLvr0401! I'm not from your area. Luckily, you have recieved good advice from our gang. I'm sorry you had to join us but grateful you found us. I'm still, thankfully, in watch & wait. Yes, the worry is so overwhelming at times...visit this group and ask your questions, share your concerns. Most importantly, educate yourself the best you can. There are many very knowledgeable kind folks here whom are able to answer your questions and point to resources to help you along the way. I cared for leukemia patients years ago. I understand the stress you feel from your memories. Please, try to move your thoughts forward. We have improved and multiple treatment options! I won't overwhelm you with these. The information is all here and at the Cll Society when you are ready for it. For today, just breathe and know you are not alone in this. One day at a time. Warm hug!
You should contact Dr. Anthony matto. He is a CLL expert now working in Ithaca. cayugahealth.org/cayuga-hea...
I know Ithaca well. Went to college nearby and have a friend who works at the Statler. Do you go to Dr Matto? I saw that he was listed on the CLL Society list of recommended Drs. I just looked at my cancer insurance policy that I have through AFLAC and I think they will reimburse for an National Cancer Inst Evaluation but it needs to happen at an NCI Cancer Center...in that case, I would need to go to NYC, Dana Farber, Yale or Roswell Park in Buffalo provided my regular insurance would cover those as well. The AFLAC Rep is coming to my office in 2 weeks so I'm going to check on this. If anyone else has AFLAC Cancer insurance and has any insight it would be welcome.
Dr.matto was the hemoc for several cll patients I know. Top notch.
My CLL specialist is Scott Huntington at Yale New Haven Hospital’s Smilow Cancer Center in New Haven, CT. He has seen me through a bad case of AIHA, and I am happy with his care.
Thank you. Good to know. I saw Francine Foss listed on the CLL Society recommended specialists at Yale - she specializes in T Cell lymphomas. Yale is the closest for me, driving wise so I was seriously considering them if my insurer Highmark would cover it. Need to check that.
I do not have a dr recommendation for you Van Gogh since I am in the NYC area. But I did want to lend you some moral support. I too have Cll and my dad also died of Cll in 1992. I have been in watch and wait for two and a half years. When I first got the diagnosis I thought of my dad and how quickly the disease took him out in less than 3 years. I knew too much about the disease to know what it could do. But I was able to get a Cll specialist who ran all the tests and assured me my Cll was indolent and nothing like my dad’s. It was like a weight was lifted off of me. In the last few years the Cll has remained indolent and I have transitioned from watch and worry to watch and wait. I hope you find a good Cll doctor who will also walk you through the process. And like I was told, even if the Cll is aggressive there are so many treatments available today that we’re not available 25 years ago. I pray you remain in watch and wait a long time and your search leads you to a good Cll doctor. Happy New Year to you.
Thank you so much for the support! What's that they say,? "You don't know what you don't know." Our problem is, we lived it! Feeling much better after all the positivity from people on this forum and the fact that treatment has advanced as it has. Glad you have made peace with the diagnosis, hopefully I can get to where you are mentally and emotionally. Wishing you all the best for a wonderful 2025.
FCR (chemoimmunotherapy) was the first CLL treatment that demonstrated improved overall survival. It's only considered safe for fit patients under 65.
Age matched analysis of 603 patients on the first of the novel therapies, Ibrutinib, found 82% survival at 12 years, while the general population's survival was 80%. There is absolutely no reason to expect that you won't live your full allotted lifespan.
CAR-T has now been approved in US.
None of the current treatments are chemotherapy. But unlike FCR for heavily mutated IgHV <94% none of them are a functional cure.
There are at least 3 other drug types in development. Bi-specific monoclonal antibodies (at least 5) are showing great promise. BTK degraders and new BCL-2 drugs.
Drugs timeline from:
nature.com/articles/s41408-...
CAR chimeric antigen receptor, BTK Bruton tyrosine kinase, FCR fludarabine, cyclophosphamide, and rituximab.
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