I have just been diagnosed (official diagnosis yesterday when flow cytometry results came back), but me and Dr. Google were pretty sure I had CLL since my well-visit blood test came back with a high WBC in November. I have been pouring over the posts on this site and have read all the Welcome and Newly Diagnosed pinned post. Thank you all so much!
I am beginning to pull my care team together. I currently see a local hematologist/oncologist, but I want my primary CLL doctor to be a CLL specialist. I’ve googled several national centers in the US and think that the Mayo Clinic would be a good choice. Does it matter which Mayo Clinic I go to? Does one of their campuses see more CLL patients or have more CLL specialists? I am not located near any of them, but the one in Jacksonville FL is the closest. I don't know how often I'll need to be seen in person.
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GranolaLover123543, the first thing I learned through this sight is use much discretion when researching through "Dr. Google". "His" news is old news. The 2nd thing I learned is exactly what you mentioned-get your team together! I don't see a CLL specialist, my hematologist/oncologist has treated CLL patients before. I'm in W&W 4 years, 74 years, 13q14, and have not had any treatments. IF the time comes, a CLL specialist will be consulted. Others in our group will give you links and current CLL advances(there have been many!). The best to you and know that you have support here for any issues that concern you. This group becomes your friends quickly. 🙂 Sandra
A CLL expert is a physician who differs from a general hematologist / oncologist in that he or she has expanded expertise, experience, and access to the latest CLL therapies, clinical trials, and best practices. The CLL expert is like the quarterback of the team, calling the plays. There is a documented survival advantage to being in the care of a CLL expert. A good starting place for finding one is CLL Society’s List of CLL Experts who have been recommended by the CLL community.
Florida CLL Healthcare Providers (I have bolded the most familiar names, but you could choose any of them to be your expert and see them once per year or only when treatment is imminent - then use a local expert for routine testing - every 3 months and for diagnosis of odd symptoms or common infections)
Alvaro Alencar, MD, University of Miami Sylvester Comprehensive Cancer Center, Miami
Jacqueline Barrientos, MD, Mount Sinai Medical Center in Miami Beach, Miami
Gregoire Bergier, MD, Florida Cancer Specialists, Largo & Clearwater
Asher A. Chanan-Khan, MD, Mayo Clinic, Jacksonville
Julio Chavez, MD Moffitt Cancer Center, Tampa
Nam H Dang, MD, University of Florida Health, Gainesville
Kathleen B. Doughney, MD, Florida Cancer Specialists, Ormond Beach, Port Orange, New Smyrna Beach
Sameh Gaballa, MD Moffitt Cancer Center, Tampa
Geetha J. Kamath, MD, Florida Cancer Specialists, St. Petersburg, Clearwater East
Lisa Nodzon, PhD, ARNP, AOCNP Moffitt Cancer Center, Tampa
Javier Pinilla-Ibarz, MD, Moffitt Cancer Center, Tampa
Jose Sandoval-Sus, MD, Moffitt Cancer Center, Tampa
Daniel L. Spitz, MD, Florida Cancer Specialists, Wellington North, West Palm Beach
Thomas H. Tang, MD, Florida Cancer Specialists, Spring Hill
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A LOCAL EXPERT
A general hematologist / oncologist can manage your ongoing care. They are often more available and can be indispensable in an emergency. The local expert may treat many different cancers and so may not have a great depth of knowledge about CLL. It is ideal to have both a local expert and a CLL expert on your team.
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Other doctors as needed: primary care, dermatologist (skin cancers are common in CLL), and other specialists as determined by co-morbidities.
Thanks, Len. Yes, I've been doing a deep dive into this site and the CLL Society site. I don't live in FL. My question is really more how the Mayo Clinic works. Does one of their 3 campuses specialize more in CLL.
My experience is that individual doctors are what you should choose, not the institution. So go to the CLL Society list for doctors you can easily travel to (drive or fly), and ask on here for input from our members.
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We have 5+ different CLL experts in NYC, and in our CLL Society support group we recommend different doctors based on the personality of the patient and the doctor.
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We have had many of the experts attend one of our meetings, and will have Dr. Megan Thompson of Memorial Sloan Kettering participate by Zoom in our Feb 11 meeting. She is very new, and one of two bright young stars at MSKCC, replacing Dr. Anthony Mato.
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February 11, 2024 @ 3:00 pm - 5:00 pm NYC CLL Society Support Group , New York, NY, United States
SPECIAL ANNOUNCEMENT: This Support Group meeting will be held virtually. Support group members will receive an invitation to register for the meeting from the support group facilitator. If you are new to the group, please sign-up below.
That's very helpful. Thanks. It would be easier for me to get to NY or Boston because there are more flights (and direct flights), but once I'm an established patient with a center, how often, generally speaking, will I need to see the CLL specialist in person, when I'm in the W&W period? Once a year? Do they routinely do telehealth appointments for the 3 month blood tests? Or does my local hematologist/oncologist handle those and just sends the result to the CLL specialist? As is clear from my muddling about, I don't really understand how the CLL specialist works when they are not located an easy distance from the patient.
The local hematologist (or even a very good diagnostician GP) can take your blood and read / interpret the results every 3 months. Most post results to some electronic record system like EPIC and then your entire team can read them on line.
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If something goes way off kilter then the CLL expert is called for a consult, but that rarely happens. So actually visiting the CLL expert can be planned well in advance- yearly or even less frequently. Many local hematologists are willing and eager to work with the the CLL experts, both sides benefit from those interactions.
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The local guys are needed / desired for the odd infections, especially anything in the pneumonia family or symptoms that are NOT likely CLL progression. (Pneumonia, whether bacterial, viral or fungal is more life threatening for us than the CLL that damaged our immune system and left the door open for the lung infections to take hold). Heart issues like hypertension and atrial fibrillation usually trigger a consult with a cardiologist. Local dermatologists also are needed on the team.
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CLL progression is usually a slow plodding event over years and months, so urgent appointments with the CLL expert are rarely needed. It's only when treatment seems to be approaching that the CLL expert is needed, and that is often many months away.
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If you want suggestions for a NY CLL expert, I will be glad to share the consensus of our NYC CLL Society Support Group via PM chat healthunlocked.com/user/lan... ,
or you can join us for the January 14 meeting and ask the group.
I highly recommend Dr. Davids! He is also my specialist. I live in Michigan, and have seen him twice since diagnosed in 2019. He gets a copy of routine bloodwork (has varied 3 mos - 6 mos). I phone his care team with any questions.
Now I understand you can go to NY or Boston, I think you will find the reply I made down below this one to be helpful.
As far as how frequently you are seen in W and W, the time frame is usually every six months. I fly into Boston every Six Months from Florida, and love to stay in the area they call Back Bay. I turn my one Morning visit, first Blood at 9am and then seeing Dr Brown at 10 am, into a three night vacation. It takes the mood from a medical visit to a good time. Getting to love Boston as a City to visit; the Sea Food is phenomenal.
On my last visit, which was almost six years into W&W, I finally heard the dreaded words: "It's not too soon to start treatment", so now I'll begin the next and new phase of this journey we all take. I'll start the pill January 1, and basically get blood work and be seen once a week for a while. Then from what I think I understand, after maybe a few Months, I'll go back to perhaps every six Months. I'm not sure about that part.
Spitz is not a CLL specialist. No idea why he has been on the list all these years. I live in southeast FL. I have had a local hematologist which has been amazing. I used her for 12 years & when it was time for treatment, she sent me 4 hours away for second opinion to Moffitt. I did not have a good experience there. While the doctor was knowledgeable, the center did other blood tests without my permission that had nothing to do with CLL & I was billed $15,000. After 6 months of stress over it, another CLL friend read my results in more depth than me & realized why my insurance would not cover it. Moffitt has done that to several other patients. I will go to Mayo in JAX next time. Also I met with doctor at Moffitt for initial visit & then they made me go back 4 weeks later which involved hotel & another 8 hour round trip appt to go over my results. The doctor's team met me & not him. I was furious. The doctor said HE would see me in 4 weeks. I put up such a fuss that they called him from another part of center to see me. He has nothing different to tell me. He confirmed what he wanted my treatment to be. It was before telahealth days but I think he should have just called me to say exactly what he told me in his office. He didn't need to exam me again since he just saw me few weeks prior. Others said that u only see him once a year & all the other visits with his team. I prefer my local hematologist. I get her personal care each time. She just retired so I am seeing another hematologist in my town. I am in remission 5 years. If I need a CLL expert, I will try JAX Mayo. I heard very good things about that center. Do u live in Florida?
No, I don't live in FL, but from my online research, it looks like Mayo would be a good place to find my CLL specialist. I am asking is whether one of their 4 campuses has more of a CLL specialty. If I'm going to have to fly to get there, I might as well go to the one that is the most knowledgable.
Good question! I didn't know there were several sections. I assume there is only one section for Hematology. No poster has ever asked which to go to. Look on their website to see if there is a common area that their hematologist see patients or call the main number to ask. Not sure how far u are traveling but other centers are MD Anderson in Houston Texas, the James at Ohio State University, Dr. Byrd in Cincinnati ( formally from Ohio State)- excellent hematologist specialist, Dana Farber in Boston.
Using this site (cllsociety.org/newly-diagno... it looks like there is only one CLL specialist at Mayo Jacksonville, but 7 CLL specialists at Mayo Rochester, so that may be the answer to my question. Is that a good way to look at it?
I am not familiar with specialists at Mayo Jacksonville but I highly recommend Moffitt Cancer Center in Tampa. It is a four hour drive for me from north Florida but definitely worth it. If you can manage the drive from where you are located I would seriously consider going there. I have a local hematologist oncologist for blood work and monitoring but defer to my Moffitt specialist for treatment decisions etc. If you need further information send me a direct message.
What state do you live in, if you don’t mind telling us. There might be CLL specialists closer to you. Although the list on the CLL Society a great start, it is by no means complete. My previous oncologist was on the list and she definitely wasn’t a specialist. They did remove her once I alerted them.
Thanks Alex830. I'm in North Carolina, but given my location, I'm about equally close to Raleigh, Charlotte, and Atlanta. I want to choose a center that has several strong CLL specialists so that I don't have to worry about my doctor leaving and having to find a new center because they were the main CLL specialist at the center.
Charlotte and Raleigh both have excellent CLL specialists. I am in SC and see Dr. Jacobs at Levine Cancer Center. I changed my care to him after receiving a second opinion from him. He is very to the point, honest and does research and is involved in CLL trials. Some people in my CLL support group see Dr. Skarbnik at Novent, also a CLL specialist, they like him. Another person sees Dr. Danielle Brander at Duke. Honestly you have excellent choices in NC. My specialist came recommended to me by Dr. Matthew Davids, a CLL specialist from Dana Farber. I got a second opinion from him through the CLL Society, a free service.
Dr. Brander at Duke is a well-known CLL specialist. We moved to NC from Atlanta. There aren’t really any CLL specialists in Atlanta. There are, however, doctors who see a lot of CLL patients at Emory. When we moved here, he tried to get in with Dr Brander, but had to jump through hoops and although he was accepted as a patient, he chose to see Dr. Skarbnik at Novant in Charlotte for several reasons (closer to us and he’s already in the Novant system, therefore blood tests are viewable by our local family doctor) He came highly recommended by several sources including Dr. Koffman of CLL Society.
One other thing - there is a CLL Society Support Group (zoom) in both Charlotte and Raleigh. And also a CLL Society Eastern US Watch&Wait Support (zoom) group - my husband is one of the facilitators of that group. Details can be found on the CLL Society website - click on “support groups” at the top left.
They have a zoom meeting tomorrow. You have to sign up through the CLL Society. Also, at Levine there are 2 other doctors who see a lot of CLL patients. I have seen Dr. Hu on occasion and liked her too.
There are actually 3 watch & wait support groups - Western, Central, Eastern. They all cover the same info so you can virtually attend whichever one is most convenient. Eastern was earlier this week. I’m not sure when the others are scheduled.
I live in SC and see Dr. Alan Skarbnik in Charlotte. He is the director of the lymphoma and chronic lymphocytic leukemia program and director of experimental therapeutics, malignant hematology at Novant Health. He is a CLL specialist and is also a member of the medical advisory board to the CLL Society. I have been very pleased with him and think he is awesome!
I recently moved from the Pacific N.W. to S.E Florida, and although I am W & W, one of the reasons we chose this area was it's close proximity to Mayo. I was lucky enough to have the right insurance and was accepted as a patient ( not as easy as you would think!). My specialist is Dr.Vivek Roy and I would highly recommend him.
It wasn't on my radar, either. We learned that if you are over 65 and DO NOT have a patient number, you cannot get in. Luckily I was 6 months shy of that number and researched which insurance policy would open that door. Do your homework! Stay well, Julie
I have no clue...as I said, it was a shocker to me that the reason we chose this part of the U.S. was specifically for Mayo...and then I very nearly didn't get in! Also unsure if it just applies to this one in Jax.
If accepted into the study, you would go to NIH at intervals to be seen. My husband is in this study and flies to Bethesda, MD (they arrange his flight) and sees a CLL specialist once a year. He was going every 6 months, but it became apparent that his version of CLL appears to be indolent, so was switched to yearly. Even though he sees a local CLL specialist, he feels like this NIH visit provides oversight and access to clinical trials should he ever need treatment. This is an observational study only.
Thanks DebDenC! It looks like I would be a good fit, and it would do my emotional state good to be involved with possibly helping science understand this disease better. Did he approach the study or does your hematologist have to submit you?
He emailed Susan Soto, the study contact. It took a while for her to get back to him. Then he had a phone interview, then flew to Bethesda at his own expense. While there, he was accepted into the study and from then on expenses (including flight home) were reimbursed. The per diem rate doesn’t totally cover hotel expenses, but helps!
The CLL Society is of course a valuable site for those of us with CLL. But my experience with the Society was less than adequate. The Society lists only one doctor in my state as a CLL specialist so naturally I booked an appointment. Several months out - but when it came time to keep that appointment the doctor's assistant asked me why I was booking for CLL as the doctor is not/nor has been a CLL specialist. It turns out - as pointed out by another member on this site - that picking a designated state specialist can, in addition to other factors, be based upon a patient's review of the doctor. Wow! Also, I signed up for a CLL Society review and after waiting months for the appointment it was cancelled five minutes before as the doctor had not received my file to review in advance. So, a second review was set up and that review produced a similar outcome - the doc was not familiar with my record and was not able to tell me anything constructive or new in the twenty minutes of review. SO, while the Society is a valuable asset/reference please stay on top of your own file and pursue the same with diligence and you will likely have a better outcome. FYI
Thank you! One of the things I'm dreading is having to be involved in the medical system. I have been very lucky to have had excellent health and never really needed to see anyone other than an occasional check-up. It sounds like the system can be very frustrating. Thanks for sharing your experience.
That wasn’t my experience. I filled out the form to request a second opinion. Gave permission to release my medical file and had an appointment a week later with a specialist from Dana Farber. Sorry you had a bad experience.
You didn't say where you are; other thank, Jax is closest to you. You are focusing with Mayo, and of course Mayo is a grand name; however, when it comes to CLL I wouldn't agree. First of all you want if possible to be followed at an NCI Accredited Cancer Center. If Jax is the closest Mayo to you, then frankly why aren't you considering Moffit? Florida has only two NCI Accredited Cancer Centers, with Moffit in Tampa being one and Sylvester in Miami being the other.
I understand your feeling about wanting the best of the best to be following you. I went through the exact same research almost six years ago, and I live in Lake Worth FL (near West Palm Beach). I narrowed my search to the following: Dana Farber (Harvard's Cancer Center in Boston), Sloan Kettering in the Big Apple, and MD Anderson in Houston. I actually then researched who was the top CLL Specialist at each one, put together their Bio's, and then sent the three Bio's to my Brother Matt. Matt is one of those super brilliant types; he was accepted to Medical School while still in High School. I wanted Sloan Kettering, because I love New York and felt I could enjoy my six Month visits best in Manhattan. Matt emailed back and said: "Go with the Woman in Boston. She leads the Nation in Genetic Research on CLL (actually developed the Genome), and was the one who brought to FDA approval the very first BTK Inhibitor (Imbrutinib)". So I listened to Matt and started at Dana Farber years ago. Thank God I did.
I knew I could travel long distances despite the added expenses, so my choice was simple. If you need to limit the travel, yet want a top Cancer Center that is ACI Accredited, and North Florida is within your acceptable distance range, then why not Moffit.
Now that I went back and read many of the initial replies you have had, I know you are in NC and can fly to both NY and Boston. I get it that you did your own research and think Mayo is a good choice, and I'm sure Mayo has fine people. If you want one of the most respected Cancer Centers that happens to have an actual Department for CLL, you would do well to consider Dana Farber in Boston.
Wizard, you and I are kindred spirits in the research department, although your brother definitely gives you the edge. I am at the exact place you were 6 years ago. I had it narrowed to your 3, plus Mayo. I didn't realize that Mayo Jax wasn't a NCI Accredited Cancer Center, since it is within the Mayo system. That's good info to know. Plus, according to Foxie, I don't know that they would even take me, since I'm 68.
And like you, I thought it would make sense to choose a CLL center in a city I enjoy visiting, which would definitely include NYC and Boston. My hubby is an avid Red Sox fan, so any excuse to go see them play would be welcomed. I'm not sure how realistic it is to consider this once I start having symptoms that might impede my love of travel.
Apparently, I have a good choice in Dr. Brander at Duke. Duke is about a 5 hour drive for me, so time-wise not that much different than flying to Boston or NYC. However, two of our kids (and my two grandkids) live in Raleigh, which is next door to Duke, so there's that.
As a fellow research geek, let me ask you a question. I thought it would be best to choose a place that has several top CLL specialists in case the specialist I'm seeing decides to move or retire. That's what led me to Mayo in Rochester. What are your thoughts? When I looked at Dana Farber, it looks like Dr. Brown and Dr. Davids are the ones to see. When I look at Duke, it seems that their bench may be shallower, although it's hard to tell. Do you think this is an important thing to consider?
So you understand the significance of my input, I was years ago in Hospital Administration for about ten years, and there is quite a line of brilliant physicians in my family history. I'm the big Ehrlich failure, never made it to be a physician; oh well. So when I research doctors and medical facilities, which I do every day every year for my Medicare client base, I know what I'm doing.
Duke is a great hospital. I walked their halls about a decade ago, when I used to visit Chapel Hill twice a year in a prior marriage. When I walk through a medical center, my senses are beyond most others, and I could tell the staff was totally in tune with good patient care.
All that aside, if it were me, I'd try to get in at Dana Farber. Mass General is right next door, and its attached to Brigham Women's. The research and clinical trials are second to none, and the Director of CLL is of course at the top of everyone's list in the field. I don't know that you can get in with Dr Brown, since she now sees patients only on Tuesdays; however, her staff is incredible and in good numbers. Boston is a fabulous place to visit, I'm sure you'd love it, and my wife and I always take the Amtrak to NYC after three nights in Boston for another three nights in Manhattan. I love my CLL six months visits, and the Broadway plays we always take in too.
OK, I take it back--we're not kindred spirits. You're WAY past me. I realize you are just starting treatment, so may not be able to answer this, but do you think that the travel will be a problem once you are in treatment. I'm new to this so don't really know enough to speculate, but I'm wondered about the following:
*increased symptoms making it hard to travel
*having to make more frequent trips because of taking meds (but would your local hematologist handle this)
I am likely overthinking this and I realize I have time, but thought it would be good to pick your brain.
I went to Mayo-Rochester,which was 4 hours away for me, when I was diagnosed and needed to start treatment. They got me into a trial and I was there for 6 years, until it was time to move to Venetoclax/Obituzimab(sp?) which I could get locally. Doing well on the V/O, but when the time comes to move on to something else, I will definitely go back to Mayo. It was a hard decision to leave Mayo in the first place, but they understood and also said I was always welcome to come back if needed. I wouldn't have left it it wasn't for the drive, the number of visits needed to get going on V/O, and because covid was at its worse at the time. Never had a bad experience there, very efficient scheduling, very short wait times, just an overall good experience. Plus they have several cll specialists.
I was diagnosed Oct 2022 and had to start treatment in Aug of this year. I was originally going to go with a CLL specialist / cancer center that was an hour drive away. After meeting with him we came to the conclusion that it would be easier for me to go to a local hematologist and that he was more than happy to work with the local doctor. I am very glad that I did that. Since starting treatment (O&V) there have been several weeks where I had to go in for labs or shots etc every day. I work full time so being able to go to facility close by has been wonderful. GDF
Yes. I went to the CLL specialist (who by the way is part of a medical college facility so he stays on top of everything new with CLL) before I needed treatment to see what he had to say (many in my support group have him as their dr). He suggested the O&V because V has been used to treat MS (I have both CLL and MS. MS since July of 2005) while my local hematologist had recommended Calquence. So far my local Dr. has been in contact with the specialist concerning my treatment. However, it has been suggested that I see the specialist once a year just so he can review things, which I will be doing. GDF
Jumping into the discussion late. You aren't mentioning where you are, and that's fine. People here can make specific recommendation if they know where you are, but it's not crucial to tell us. IMO probably THE most important thing moving forward, is how comfortable you are with the doc(s). It isn't about what place has the most specialists, or does the most research. All the top docs are equally knowledgable, have slightly different ways they practice and interact with patients. It's a matter of finding one YOU are comfortable interacting with.
It's more important that there is someone local you can trust IMO, so you feel reassured if you have problems/hospitalizations. If the local person does not happen to be a specialist, a CLL specialist overseeing your care is a good thing. There are a number of really good local hem-oncs who welcome specialist input when treating a patient with this rare cancer. Similar to how a GP may welcome a dermatologist or pulmonologist being involved if their patient needs it. A hem-onc who is unwilling to have a CLL specialist involved, is a red flag. As would be a GP unwilling to consult with a dermatologist, or pulmonologist.
The process of finding someone you are comfortable with may take some time. You may be lucky and "click" with the first doc you see, you may not. You may be fine with a doc at first, then change your mind. All of this is OK.
What you say makes sense. I'm in North Carolina. I'm awaiting the results of my FISH and TP53 testing, which will be reviewed by my local hematologist/oncologist. This doc is not a CLL specialist. I figure once I get these results, I can go into looking for a CLL specialist. Right now, I'm considering Duke or Dana Farber. Duke is 5 hours away and Dana Farber is a flight away. My decision will be influenced on what we find out next week with my husband's prostate cancer diagnosis. We'll learn the results of the PET scan then and, thus, his prognosis. That will be important info in making the decision of what CLL specialist to use. I will also need to see if I have trouble getting into a specialty center.
FWIW, the local hem-onc doing my initial diagnosis was fantastic. He read up on CLL, and had zero problems working with a specialist. In fact, one treatment got pushed out a bit because he wasn't comfortable starting it until I got a final assessment pre-treatment from the specialist.
If you aren't having symptoms affecting your life drastically right now, perhaps just get a second opinion from CLL Society after you get FISH & other tests back. You probably don't need to see a specialist urgently, deal with your husbands stuff first. Why not join a North Carolina CLL Society group, and see what they have to say about docs? My local group does most meetings by Zoom, I don't have to drive anywhere. Sometimes docs will present at the Zoom meetings. I know one person here who switched to my doc after hearing him speak at one of our meetings. He had a great CLL doc already, just, they weren't meshing with what he as the patient wanted to do.
We stress here it's ideal to get input from a specialist, but since our cancer is generally not urgently life-threatening, there's no huge rush to do it all within the first few months. The idea is to have specialist input before starting treatment, and if one has problems during therapy. I was an oncology pharmacist, I read up on my disease & got into a trial & was dealing with things for years before joining this support group. It was a new hem-onc trying to gaslight/pooh-pooh me that the drug "could not possibly be causing new symptoms you are reporting" that had me searching, and finding this group.
Getting into a specialty center is more a matter of your insurance. If you need a referral, if they are out of network. Plus new patient appointments are often only a few per month, at set times. You likely will have to be flexible, because many specialty practices (not just CLL) only see new non urgent patients on X days of the week, at Y times only.
The other specialists it may be wise to start investigating is a dermatologist and a pulmonologist. We CLL-ers are at a higher risk of skin and lung problems. At a minimum, it would be smart to start yearly skin screenings.
But unless you are having some sort of troublesome symptoms right now, you have time to deal with your husbands health issues first.
P.S. The doc Pooh-poohing me IMO is an idiot. When I pulled up documentation showing that the drug could indeed be causing my problems, and that I was in a support group where many there also reported the same symptoms, his response was "but it's working so well!" OMG I was miserable on it, and there were clinical trials for newer drugs. He was not a true CLL specialist, just one of the 2 docs at that practice group who saw their CLL patients. He totally disregarded my quality of life concerns. Interestingly enough, the doc I now see is in that same large oncology practice but in a different facility in a different city. My current doc does research and mostly sees only lymphoma blood disorder patients. That's why I say, keep checking/switching if you aren't comfortable if you can. When I went on Medicare, I made sure I selected a large network PPO so I can be seen virtually anywhere. I will have a higher coinsurance, but it won't be totally out of network.
Thanks. I'll be attending the next Raleigh, NC support group zoom meeting. I am totally asymptomatic, so I'm sure I'll be in W&W--hopefully for a long time. I don't think my local hematologist is all that knowledgeable, but I haven't met with her in person yet because she was on maternity leave. I know that she was pushing for a PET or CT scan as part of the diagnostic workup, which, as I understand it, is not generally recommended per the ASH CLL Guidelines. I told her office that I wasn't comfortable with getting that imaging until I understood what the reasoning for it is. I'll know more in a couple of weeks when I see her for the first time. Thanks for your input. It is greatly appreciated.
PET-CT is not *necessary* for initial workup, but I can understand asking for one. It allows for a baseline snapshot of lymph node size and metabolic activity, early into the disease. I am talking "PET-CT" not straight PET or straight CT. So it's nice to have, but not necessary. You have to decide if you are willing to do the procedure, or not. Some docs ask for a baseline bone marrow biopsy. Again, this is nice to have but not necessary.
If it were me, I would consider one if my FISH came back with Trisomy 12 or other suspected markers contributing to a higher possibility of Richter's Transformation. Especially if you have been generally healthy and haven't already had a number of X ray or previous CT for other disease states. But not, if you think you may be interested in ever doing a clinical trial. Those generally require various imaging scans, as well as bone marrow biopsy, so no need to get them now if you know you will be likely to getting more from a study.
My thinking is that I need to balance the desire for a baseline with the radiation exposure. I assume I'll need imaging in the future if I'm part of a clinical trial. I also assume that I'll need more imaging for cancer detection now that I know I'm more likely to get other cancers. Since I have no symptoms, I can't see that imaging would change the decision to W&W. I also thought I'd see what the CLL specialist says I need. I'm assuming that she had ordered a regular PET scan. I don't know the distinction between a PET and PET-CT and a CT. Jeez--there is a lot to learn!!
You don't necessarily need more imaging for other cancer detection. Skin screening for skin cancer is #1, seeing a pulmonologist for baseline lung assessment (this does not involve imaging) would be #2. Unless you have wheezing, rales, or lung obstruction as heard on a stethoscope, I doubt anyone would do lung imaging as part of a lung assessment. The only routine imaging I still do is digital breast cancer screening. And I am debating doing a colonoscopy, but that is because my GI problems have never really died down. I did at one point have some internal nodes larger than normal, and I would consider looking in that area where I am having known problems.
The idea is, if you develop new symptoms, to get them checked sooner rather than later. And imaging may be included if certain symptoms develop. But it would be unusual to get random body parts CT'd or PET, as part of a cancer screening.
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I don't live in FL. My question is really more how the Mayo Clinic works. Does one of their 3 campuses specialize more in CLL. 
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