Should I See A Top Specialist: I'm diagnosed a... - CLL Support

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Should I See A Top Specialist

wizzard166
wizzard166

I'm diagnosed a year and a half ago, and not yet in treatment. My white count just reached 30,000, i seem to be more tired than usual daily, each week I feel like i'm fighting something (sniffles, stomach, whatever), and the lumps in the side of my neck are pronounced all the time (used to be only when I got sick before I was diagnosed for many decades)

I'm seeing a hematologist at Lynn Cancer Center in Boca Raton every six months, and I think she is competent, but lately I've been wondering about something I'd like opinions on.

I know there are doctors who see more patients with CLL than others, and who might be in centers of excellence in this field. Places that do research in addition to treatment. I saw an article about Anthony Mato at Sloan Kettering, and I was quite impressed. I started thinking if I owed it to myself to try to get to see him for an evaluation, even though I have a diagnosis and am told we watch and wait. I live in Lake Worth Florida, but I can travel to NYC here and there if I want to, and my insurance is Medicare with a Supplement so I don't have any barriers there either.

Am I going overboard with this ideal, or does it make sense to some of you.

Thanks for your opinions.

43 Replies
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W,

I am being monitored by a Cll Specialist. I initially saw a hematologist and although many of them are very knowledgeable I felt more comfortable having a specialist. Dr Mato and Sloan are definitely very well know, but you may want to look for a Cll specialist in Florida first. There are many great specialists and facilities in Florida. Also some of the very well known specialists due to their patient load and involvement in research may not be accepting new patients so check that first also. I believe there are numerous postings on this site and other members that would provide you references to Cll specialists in your area. That is how I found my cll specialists. Good luck and hope this helps.

You could go to Moffit Cancer Center in the Tampa area for a second opinion. They have CLL Specialists.

I am at FL Cancer Specialists and they have been great for me. I have been diagnosed for 31+ years with CLL and my mI doctors felt I had had it for several years before being diagnosed. I feel better then I am able to remember! Life is good!

Panz ☘️🙏💕😍☃️

PerfectPurple
PerfectPurple in reply to Panz

Panz, it is not often I run across someone with more CLL time than me. I am going on 19 years. However I cannot say I feel good. My disease is progressing, but very slowly and I am nowhere near needing treatment other than the IvIg i get every 2 months to boost my immune system. However, I am experiencing considerable fatigue as well as muscle and joint issues. Even my CLL specialist in NY is blaming my symptoms on age - I am 79.

If you have any tricks that keep you in such good shape, I would appreciate hearing about them.

Thanks.

Ozziebee
Ozziebee in reply to Panz

Have you ever been treated? I was diagnosed in 2015 and my counts are going up incredibly slowly. I am hoping to be one of the lucky ones who don’t need treatment… Ever? Or at least in the next 20 years! 31 years! Good for you!

Panz
Panz in reply to Ozziebee

I have been on Leukeran off and on as counts required for 17 years and Imbruvica 420 for 6 months. Not currently on any treatment but I do get IVIG every 4 weeks! Feeling great!!

Panz 🙏☘️☃️

Ozziebee
Ozziebee in reply to Panz

Excellent!

Shaheenji
Shaheenji in reply to Panz

You are going nicely. Wish you all the best.

You might want to try the free service offered by CLL Society - you probably qualify since you are not in treatment:

cllsociety.org/cll-society-...

Not sure what the free service is for. My question doesnt have to do with affording to get consultations with my present doctor or the Specialist at Sloan Kettering. It has to do with whether it is desirable to go to see a top Hemotologist who regularly deals with CLL in New York, even though I am seeing a local Hematologist at a cancer centerwhere I live in South Florida

You will be able to speak to a specialist who can let you know whether you should see a specialist at this point based on your counts and genetics. They can likely suggest specialists in your area. The free is not based on need - it is a service provided to CLL community.

AussieNeil
AussieNeilAdministrator in reply to wizzard166

The purpose and process of the Expert Access program is clearly outlined in the reference - culminating with "A 30-minute video consultation (will then occur) between you and a top CLL specialist". You may already have expert support from MSK, but for many US based members who, generally because of where they live and perhaps for personal finances/health insurance reasons, aren't able to access such expertise, the CLL Society's Expert Access program is literally a life saver. I would say that most of those living outside of the USA would like to be able to access such a program.

In response to your specific request about the value of maintaining a more regular relationship with a local haematologist, augmented by access to a well recognised specialist that works primarily with CLL patients, quite a few of us do exactly that, with our local specialist able to call on the "CLL specialist" we see perhaps annually and involving long distance travel. It's challenging for local blood cancer specialists to stay across the very fast treatment changes in CLL, when they are also attempting to do that for their other, non CLL patients.

Neil

I think that if it gives you peace of mind, provides only some confirmation that you are on the correct course for you, and affirms that you are in the best hands for now where you are, then it is very smart to see a CLL specialist. I see one in Chicago because my work causes me to go to Chicago at least six to seven days a month. I have to believe that there is a CLL Specialist much closer to you and as qualified as anyone working in NYC or Chicago. Okay? Hope this helps. God bless and take good care.

Michael

I would say see a cll specialist. Hematologists are not always as knowledgeable in CLL which is really it’s own thing.

Good luck!!

I am four years out and I’m beginning to feel I’m approaching stage 1 after watch and wait. But I have so many other issues it’s hard to tell. I see doc in March. May move it up.

Hello wizzard….I am reading through the replies and my feeling is you have symptoms that a CLL specialist is best at answering and in diagnosing. Find a CLL specialist in Florida. There have to be many. Seeing a hematologist is not like seeing a specialist. You really need to find someone who can answer your questions, due a blood work up, and monitor you. For your sake, I hope you take the advice of myself and others who are advising you to see someone other than your hematologist. My best to you. Carole

Hello Wizard

Dr Mato is my specialist I see him once per year and I see my local oncologist every 3 months. They will share information between the 2 Drs. I think it’s a great idea to have a specialist that can get all the information and track the pace of your CLL. In the event you ever need treatment. Dr Mato is one of the Top CLL specialist so he’s a great choice .

At my first visit with DR Mato he ran every test available because I traveled 8 hours round trip. He more then likely will do a Bone Marrow Biopsy as well , again he wants all the information possible in the event you need treatment he’ll know all your prognostic information. Best wishes John

Thank you Aussie Neil, I appreciate your input. My instincts have been telling me to see out one of the professionals at the top of the ladder, if I can get to see him/her, because my initial but limited efforts at reading about my condition indicates it is not so black and white. It is frustrating to learn that I need to wait to call up the infantry, until the enemy has already crossed through my initial lines of defense; because, the infantry will attack me in addition to my enemy. This watch and wait business is because the only treatment we have to beat back this evil force is chemo, and chemo is a poison that attacks my healthy tissues and organs too.

One of the things I learned in Sloan Ketterings introductory article on the arrival of Dr. Mato, is about the research he is overseeing about alternative treatments. One of those is genetic engineering of T Cells to specifically target the type of mutated white cells we all have. I've learned there are variations in shape, size, and characteristics of these near immortal mutated white cells that clog up our bone marrow and then squeeze out the normal red cells and platelets in our blood stream. If specifically engineered killer T Cells can be programmed to go after a person's specific type of mutated white cells, then maybe we can go after these attacking enemies way before it is too late to really turn back the tide of the disease. I mean even during the current "Watch And Wait" phase.

It just seems that if I can get in to see the man/woman at the top of the organization that is developing this alternative therapy, it would increase my chances at ultimately getting the years I would/could have had if this vermin had not invaded me.

AussieNeil
AussieNeilAdministrator in reply to wizzard166

I agree with your analogy.

I would not term CAR (T or NK) as alternative, but as experimental. I specifically consider 'Alternative' as the term for treatments that are not evidence based. Through careful adherence to experimental research and development via the clinical trials process, we are learning where and when CAR therapy will be most effective.

CAR-T therapy got its start with CLL patients who had run out of other options. It has since been shown to have greater promise for other cancers. Perhaps CAR-NK will prove more effective for CLL?

With respect to earlier intervention, researchers are beginning to define which CLL populations will do better with that rather than (over) waiting.

Neil

So in other words getting evaluated by the people at Sloan Kettering is likely to lead to better knowledge about my particular type of cells and timing of treatment.

With respect to the CAR(T or NK) I don't have enough knowledge yet to have a feel with the promise it could hold. I'll have to do some more reading; however, it wouldnt surprise me if a human's own defense system (T Cells) might not with re engineering prove to be more effective than basic poisons.

AussieNeil
AussieNeilAdministrator in reply to wizzard166

I wouldn't consider modern targeted CLL therapies "basic poisons" but perhaps you could apply that terminology, with some licence, to older chemotherapies. Modern cancer drugs are highly engineered to maximise on-target effectiveness while minimising off-target collateral damage.

Neil

MsLockYourPosts
MsLockYourPostsVolunteer in reply to wizzard166

Thanks for posting this video, Narl. In Florida Dr. Penilla-Ibarez at Moffit is very well known, as is Dr. Channan Kahn at the Mayo in Jacksonville. Should you need treatment or decide on a trial, being somewhat close to home has advantages. If New York is an area of interest for some reason, Dr. Nicole Lamanna and Dr. Richard Furman (both in the video) along with Dr. Mato, would be the three big names. There are other centers around the country with equally big names, however. If you would be traveling you might want to consider whether there is an area where you have family or friends. It’s helpful to have someone you know around, especially should you need to stay longer than expected or need support from someone while dealing with an illness while on the road (so to speak).

Keeping an eye on the developments with CAR T will be interesting, but I suspect that, should you need treatment, you would start with one of the new non chemo treatments or combinations. CAR T has a ways to go before it becomes a first line treatment, or maybe it will be surpassed by the targeted therapies and fall by the wayside. Things are moving very fast I hope that I’m around long enough to find out which path leads to the cure!

narl
narl in reply to wizzard166

Car-T is not as easy as all that. You are likely not going to be given chemo, but Ibruitinib, or Alacabrutinib. You can get a free from your living room evaluation from a CLL expert through cllsociety.org I had mine with Dr. Choi, there is a cll expert in Tampa. Dr, Ibarz, here is a link. youtu.be/gFRG0DJIjs4

wizzard166: I was seeing a hematologist/oncologist at the Lynn cancer center from 2014 to 2017. Then moved to Texas to be close to family as I was not doing good. I had chemo and then started Imbruvica in 2017 in Florida. In Texas was on imbruvica and was getting sinus infections every two months. plus got AFIB from the imbruvica. I ended up in hospital with pneumonia. I then went to see a Specialist in Dallas , thanks to information from my Cll support group in Dallas. I was changed to acalabrutinib and started getting IVIG infusions. I am telling you all this, because I wish I would have seen a Specialist in 2015 before I started Chemo, but did not have the knowledge to seek out a specialist at the time. My fault. I thought I was really being taken care of by a specialist, by seeing a hematologist/oncologist. My sincere advice is to see a Specialist as soon as you can. It has made all the difference in my treatment--100%.

Bill

AussieNeil
AussieNeilAdministrator

Also relevant to your question: healthunlocked.com/cllsuppo...

Follow your instinct and have no regrets - go and see the specialist.

Taking a simplistic approach it seems to me that, through the good advice on this site, you may want to find a top CLL specialist near you in Florida. There are many top docs and centers nearer you than in NYC.

I go to MSK, not to Dr. Mayo but to Dr. Zelenetz on a clinical trial. Both are top notch but I am 2 hrs away versus a plane-trip for you to NYC.

Hi Wizzard166,

I originally was diagnosed by a Hematology Oncologist. After doing further research into CLL, I went to see a CLL Specialist at Dana Farber. The reason why I sought out a specialist is because CLL is a game of numbers and I wanted to have someone highly versed in all the subtle nuances of CLL. As in life, Timing is EVERYTHING. In CLL timing is also EVERYTHING. When it comes to treatment, it was a critical factor for me to have the best person telling me it is time. I didn’t plan on seeing my specialist solely. I originally thought perhaps she could oversee my case and work with my hematologist.. When I went to my appointment at Dana Farber, I felt I was in good hands and I had an instant rapport with her.

My best advice is to see a specialist, hear what they have to say, find out if the are willing to collaborate with your Doctor or you may decide, like me, to work with the specialist.

Wishing you all the very best,

Sandy

I think you are being wise to question how you want to manage your situation. There are a lot of factors involved on what is your current status. A WBC of 30,000 does not sound like an immediate risk. I assume your RBC and platelet counts are normal. The important point is the doubling rate: where you at 15,000 six months ago, for example. Also, there should be a genetic profile completed; if there was no chromosomal analysis done, then I would suspect that your current care could be better managed. You never lose with a second opinion. In fact, I would guess you will learn something new about your condition by raching out to a respected oncologist. Others have pointed out that there are great facilities in Florida. If you want to go to Sloan Kettering in New York, do you know if you can even get an appointment? Usually, a lot of paperwork will have to be filled out initially. Not a big deal, just prepare for who can see you at what time. There are many other great hospitals between Lake Worth and NYC: Johns Hopkins in Baltimore, University of Pennsylvania in Philadelphia, Emory University in Atlanta, etc. The most serious part of CLL, at least in my opinion, is that this is a disease that will most likely stay with you for the rest of your life. Patients are not typically cured of this disease, hence the word "chronic" in CLL. You are not going overboard - your health is your top priority. Take charge!

Hello wizzard166:

You should see a CLL specialist if possible, and definitely see one before starting any form of therapy. The CLL Society website has a list of CLL specialists by state cllsociety.org/toolbox/cll-.... There are 10 in Florida for you to choose from.

Best,

Teresa

30000 to me is a low number, mine was 132000 when I started imbruvica. Then I immediately got very sick and was in the hospital 3 times, as my white count had gone up to 302,000. That 302000 is not a misprint. First time in the hospital they had no idea what to do with a white count like that and some doctor sent me home with a prescription to go get filled to take three pills and if I'm not better come back. Of course I was not better and didn't realize how sick I was although at times I could barely walk. Check back into the hospital and it was evening so different doctors again the white count around 300,000 they had no idea what to do. so this doctor came in and told me there's nothing more we can do for you here we're going to call an ambulance and send you downtown to the medical center in Houston. So that's where I went and finally an oncologist came in to explain that's not uncommon for that number to go up and at some point it will plateau off. As of my last blood test it was 42,000. Everyone is very happy therefore I'm only saying when you're looking simply at your white count 30,000, I'd be surprised if anyone tells you they started treatment with that low number.

rcusher
rcusher in reply to oldguy68

I was up to 365K and because I was still doing OK they didn't start treatment but carefully monitored me and when things started to go bad was treated.

oldguy68
oldguy68 in reply to rcusher

365 wow. My hospital stays they were going nuts not knowing what to do with 302k. I guess that just shows how different things can be for individual people and or hematologist-oncologist.

rcusher
rcusher in reply to oldguy68

Yes, my Onco/Haem. said he doesn't treat the counts as long as you are feeling good but once your totals get that high he said things were going to happen soon and it could be quick to treatment and it was. I had chemo and now it's been 2 years on ibrutinib so after 11 years now everything is going as fine as can be expected. Grateful.

Hello wizzaed166

I understand your concerns about future treatment, but based solely on your WBC you are long ways from treatment. This does not however say that you should not seek all the information you can. I chose the chemo treatment over inhibitors drugs and am doing great. I saw 4 CLL Specialists, 3 hematologist/oncologists before treatment. I can honestly say that my treatment by my hematologist/oncologist has been great and consult with CLL Specialist did not change treatment. I still see my CLL Specialist every 6 months just to make sure I am going the right way. Blessings.

Yes, I think it is worth and that you do owe it to yourself to collect the most expert opinion(s)possible... and that means from doctors who focus on CLL and treat pretty much nothing but CLL. And it is a good idea to gather these opinions now, before you get too ill or immune-compromised to comfortably travel and stay away from home, and take in the information the specialist gives you. I don't know if you need to go as far as NYC and Dr. Mato (although he is very highly regarded). Good luck to you!

Yes, you should see a specialist. I have had CLL for 4 years and no treatment. I go to Dr. Choi in University of California, San Diego Medical Center. He specializes in CLL, that all he does. I live in Colorado but travel once a year to see him. Same problem fatigue and lumps on my neck.

Jim

Jim, I live in Arizona and go every six months to University of California, Irvine to see my specialist. I'm always interested in what she has to say and a specialist seems to do more in the way of blood work than the hematologist I see here once a month for blood work. I've given as many as 10 tubes of blood at UCI, vs two at my local hema. Someone said they found their specialist through this site and I did too. So happy to be part of this group of knowledgeable people all with the same disease. We are blessed to be here. Carole

I had 6 consults including one in NYC. Moffit Center and Sylvester Cancer Center are also good choices. Sylvester is an NI H hospital. My physician is at Sylvester.

wizzard166
wizzard166 in reply to bayside64

Hey Bayside, I'm guessing you and I might have come from the same neck of the woods; assuming, you mean Bayside Queens. If so I went to the Bayside High Prom in '64, but I wasnt a student there.

I'm curious who your doctor is at Sylvester. Do you have any idea if Sylvester has alot of CLL patients; in other words, maybe a place like Sloan Kettering where they have a group of doctors who see alot of them. Are they doing research in CLL?

I've been thinking about Sloan Kettering because I am originally from NY, and I still have a 93 yer old Aunt who lives in Manhattan, and her two Sons live within driving distance of Manhattan. Mainly I know Sloan Kettering has been a National Name in Cancer since I've been around, and I'm 72. Mato came from U of Pennsylvania, and we all know the reputation of that institution. Still if there is a place (maybe Sylvester) of somewhat similar repute, and a Specialist who is Nationally recognized at that institution, I suppose it makes sense for me to go there. I live in Lake Worth.

bayside64
bayside64 in reply to wizzard166

I went to PS 31 and Nathaniel Hawthorne Jr. High inBayside. Been in South Florida since. I see Dr. Joseph Rosenblatt at Sylvester. He is also a researcher and very thorough, well regarded and respected. Sylvester is also in Broward. Not sure about Palm Beach. Dr. Richard Furman is my New York physician.

Definitely, yes! Dr. William Wierda at MD Anderson is # one in the world.

I also live in south central Florida. I receive ivig infusions monthly from dr. Richard Buck in Sarasota at Florida Cancer Center. BUT, I travel to Birmingham to University of Alabama Birmingham Kirtlin Clinic to see Dr Randall Davis every 6 months. Look him up. He is The Nationally known expert on CLL. I love both docs as they work together and don’t miss anything!

You'll probably be on w/w until wbc at a level where your doc will decide for treatment.

I was diagnosed oct2011 at 26000, on watch and wait until jun2016 when I hit 145000. Put on Gazyva and columbucil and count down to 6500 by nov2016. Counts up again in mar2018.

Now on 420 mg Imbruvica daily with wbc around 12000. I'm an 84 y/o male.

Also, being treated at Virginia Cancer institute here in Midlothian VA by Dr. Schunn. Also receiving IvIg bi-monthly.

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