I think perhaps I should print out Maggie_b's post from yesterday, "High WBC but it doesn't matter" to give to my hemo/oncologist (along with other similar posts, articles, & webinar material about high WBC). Then again given my experience for the past 5+ years with him when it comes to other's opinions... "it doesn't matter".
I'm W&W for 5.5 yrs and WBC has gone from about 10 to 60 (about 6 to 52 for ALC) in that time and has gone up fairly steadily (no spikes). My hemoglobin and platelets are in the low-middle of the normal range as are my immunoglobulin levels. My nodes are almost all "tiny" and I'm "Stage I". And I have about zero CLL symptoms. Yet now for the 2nd time - once in Nov 2015 + now in March '17 he's said the same thing discussing my labs, "Seems like this is the year we'll need to start treatment".
In 2015 he said it was because my WBC was getting to very high levels and my neutrophil count (???) had dipped into the below normal level (wound up a one time thing not that it even mattered). This time he said, "when WBC gets to about 60, it is ready to jump and will likely be 80 or above very soon, perhaps your next appointment." Both times I started to counter with the standards for starting Tx as per the IWCLL, but he always has a way of either negating or ignoring what I offer.
When I first was assigned to him, I talked to both him and 2 administrators about switching doctors as 1) my cousin gave me a reference to one of his colleagues, 2) this other doctor's bio emphasized leukemia whereas my doctor's only mentioned lymphomas, and 3) his tendency not to directly answer my questions or engage in discussion but instead doing this pooh-poohing thing & telling me I'm thinking too much & adding to my anxiety (while to me, not knowing things & leaving it totally up to him adds to my anxiety). When I tried to switch I was met with a real battle. They REALLY didn't want me to. I was told they all meet once a week anyway so my case is everyone's case. I finally gave up trying & ever since just 'yes' my doctor's opinions and guidance and then move on to this site among others to learn things.
So do I push to try to switch again? Go elsewhere (went to a CLL expert at Moffitt about 75 minutes from me a year ago)? Continue to 'yes' him until he pushes for Tx and then get a 2nd opinion? What I didn't even mention is how he ignores my attempts to discuss various Tx methods. I really don't want chemo and 3 years ago and many times since he's told me that "given my 'type', when it comes time for treatment I WILL get FCR" (at which time I usually bring up Dr. Furman, at which time he usually pooh-poohs). I should add that the CLL expert @ Moffitt also pooh-poohed the idea of targeted therapy over chemo).
Thanks
Gene Mitchell, 62, no co-morbidities, mutated, 13q deleted, Dx 201l.
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I did get a 2nd opinion from a CLL specialist a year ago and he concurred with your opinion, not my doctor's... and nothing's changed much since (ALC up from lo 40's to lo 50's is about it). What made me think again about changing doctors was the deja vu I experienced when I recently returned to him for my first visit since the time he said, "Seems like this is the year we'll need to start treatment".
Find another specialist in another specialist centre NOW! Given you know more about when to start treatment than your haem/oncologist and he's ignoring top international CLL specialists who drafted and maintain the iWCLL Guidelines, you are just risking your health staying with him/his centre - even when it comes to simply monitoring your health with CLL! Further to the information in this post and links in the replies:
we have quite a few members with far higher WBCs than you who continue to be monitored by their specialists without treatment being discussed. Some have found that their WBC has stabilised at high levels in the 200+ range and it could be many years before you get to those levels, let alone need treatment for other genuine reasons. As you've also noted, neutropenia is not mentioned as a reason to start treatment in the iWCLL guidelines and if my specialist was as badly informed as yours, I would have had treatment over 8 years ago - I'm still in W&W.
I actually wrote to you about this exact issue in Nov '15, the first time he made his 'T(x) minus 1 year and counting' prognostication. Of course it's a year and a half since then so so much for his 'Amazing Kreskin' powers (old U.S.-centric reference).
You know, I'm actually at a center of fairly high repute. In Florida there are only 4 cancer centers that have been designated "Cancer Centers of Excellence": Moffitt, Mayo Clinic, Sylvester (U of Miami), and mine, which had been MD Anderson, Orlando when I started and now is Univ of Florida Cancer Center.
Also changing doctors is difficult these days (won't get into how Obamacare, although giving me insurance private companies wouldn't, and saving me from bankruptcy, has also caused insurance companies to reduce costs & one way is to drastically limit their networks so switching to a cll specialist/expert often will be only if one is willing in paying a steep 'out of network' bill (a.k.a. full price).
I was pretty sure the community would come down on the side of leaving my doctor, so it strengthens my thought the I should follow up on the idea of switching doctors within the facility, this time not stopping until the battle is won. The doctor I'm interested in is also the principal investigator on most CLL trials at the center, the most recent, though 'active but not recruiting', is NCT02048813, Ibrutinib + Rituximab vs. FCR).
I'll re-post at some point in the next few months with what I did do (not to be confused with didgeridoo).
Don't confuse a cancer 'center of fairly high repute', with a CLL center of fairly high repute. CLL is a rare cancer and even though it is a Non-Hodgkin's Lymphoma, it is better treated with specific treatments known to work best with CLL rather than those applied by non CLL specialists because they are known to work OK with a generic Non-Hodgkin's Lymphoma.
Given Florida's popularity as a retirement state and hence likely to have a higher than average occurrence of CLL, I find it curious as to why CLL expertise there appears to be behind the times, particularly given the Mayo and M D Anderson names. (I'm very interested to know if my assumptions are shared by members living in Florida and hopefully I'm quite wrong in my assumptions.) If I'm right, is it because there's a lack of interaction between specialists there and the MD Anderson and Mayo centres of excellence in Texas and Minnesota respectively?
pkenn explained to me the lack of connection to MD Anderson in TX and other's who had used their name (I just assumed they'd all get together in conferences where the Houstonites would have the opportunity to assure that the MDA reputation endure by expounding on all the cutting edge information they had).
However, the whole facility, I know, does have an excellent reputation (and you can tell they charge too much cause the grounds and buildings are extravagant). But the one doctor I did mention has both an excellent reputation and has run CLL clinical trials so I figured he's a good next step. Later in this thread, though, shoshanaz recommended something I'll also check out.
When it comes close to the time to decide about treating traveling would not out of the question for me; and for you UCSD, headed up by brilliant, empathetic Dr. Kipps, is an excellent choice for your CLL care. Did you think about UF Health Cancer Ctr or Moffitt or Mayo in Jacksonville?
I use to work at MD Anderson Orlando in the 1990's (then known as the Orlando Cancer Center). It was an excellent center at that time and very closely tied to Houston. After several years there I moved on to family practice for 14 years. Somewhere along the line the relationship between Orlando and Houston became weaker and then was dropped. Since it became UF Health Center I have not been at all pleased with the care my patients have received there so I stopped referring there and would certainly never go there myself. Also UF Health Center and Moffitt don't have dedicated CLL specialists. It seems that Dr Chanan-Khan at Mayo Jacksonville has a good reputation, but at the time I was making the decision regarding CLL specialists I could really only find anecdotal reports about him and some publications but not enough info to really make an informed decision to go there. From everything I know now I think he would be a good choice.
Everything I found regarding UCSD seemed to be exactly what I was looking for in CLL specialists and I have no regrets at all. As far as the traveling part of the equation, I can get on Alaska Air for $144.00 dollars and be in San Diego 4+ hours later. The American Cancer Society gets excellent rates for hotels for patients traveling for cancer care. When it came time for treatment I rented a furnished apartment for 6 weeks for my venetoclax ramp up. The ACS would have helped with that also or I could have worked through UCSD for lodging there (limited).
Nice to know all the financial help that's available tho' if you're saying that anyone can travel to San Diego for $144, it may just be time for for a vacation.
Does your FL insurance cover the treatment in CA?
As far as dedicated CLL specialists, it can be difficult to reconcile the various lists given vague criteria; I've seen 3 lists - Dr Koffman's, Dr Sharman's & ACOR's:
Each have many different names listed. There's a total of 15 names for Florida with only Chanan-Khan listed on all 3. However each - except Sharman's - lists the doctor I saw at Moffitt, Javier Pinilla-Ibarz.
And for the first time I noticed a Dr. William Grow on the ACOR list, part of Hematology Oncology Consultants in Orlando (& Florida Hosp. Winter Park). You know him? Find almost nothing when I google.
Thanks for your helpful information. Who knows, maybe I'll end up outdoing you by not only being treated at UCSD but staying at my own home (using the Orlando-San Diego ticket to visit folks back in Orlando... might have sensed I really like San Diego).
Yes my insurance covers my care in San Diego as well as my Venetoclax for 13 q deletion. San Diego is a great city with a climate second to none! I could sure see living there as well!
I was looking for a CLL specialist that treats only CLL. (not that there aren't others that are good CLL specialists-just my bias). I had to go to the various specialist's websites or look at bio's on journal articles to figure out exactly what they did. You could also call the specialist's office and ask what they treat.
Interesting you should mention Dr Grow. He is my mother's hem/onc for her myeloma. I go with her to her appointments with him every month. He is a very kind man who seems knowledgable about myeloma and has a good reputation in the community. But he is a general hem/onc. I don't know if he has any special areas of interest or expertise. I saw another hem/onc in that group when I was first diagnosed.
I spent a few days in San Diego, and boy did I love the weather compared to here (we can't complain... but I do, cause I really don't enjoy 7 months of 90+ degrees). Unfortunately a bunch of my relatives all settled in Orlando and I came here to help out Mom & Dad when they got ill. Mom is now 92 & I'm the only child she has that can get in a car to visit or help out when needed... so. As for San Diego, and the only place I've been more pleasant, Hawaii, the problem is everyone loves being there so it's crowded and expensive. I'm now thinking about Oregon (Dr. Sharman??) or Washington one day, cause I like a lot of that area culturally and I kinda like the rain.
On the coincidence front, re: Drs. Sharman & Grow. Aussie Neil (below) responded with a cautionary note about these CLL lists with his point being that for all we know Dr. Grow is on the list cause your mom thinks he's great, & I should put most faith in Dr. Sharman's list.
I have the identical situation with my parents. Makes it difficult to leave the area, but I too have no intention of staying in Orlando long term. Just too oppressively hot and humid! And I am not into the Disney thing at all.
Totally agree with you and AssieNeil regarding the lists. Can't go by a physician's popularity with patients. We need people like Dr Sharman who can give peer reviewed lists of CLL specialists.
Dr Grow is a nice man that everyone seems to love, but he is NOT a CLL or myeloma specialist. My mother is 89 living in assisted living with my 92 year old father, and just need to keep her stable and maintain her quality of life as long as possible. So far we have been successful at that with 3 injections a month of Velcade.
Oh, and I was going to suggest we meet by Cinderella's castle. No, actually that's another similarity... my Disney days are long gone, except when the occasional child relative comes to visit (but lately it's been water parks which leaves me out).
Headed to San Diego again tomorrow for an appointment Tuesday morning. Will see how it goes. Will go visit the animals at the zoo in the afternoon and enjoy the weather. Will be thinking about you!
With respect to the CLL specialist lists, it is important to recognise that the patient recommended lists may include doctors with whom the recommending patient feels comfortable, not because the doctor is staying across the latest treatments. Dr Sharman's list would be better in that regard, but not as comprehensive.
Not knowing I did get the feeling that it didn't take much more than a pro-active patient who loved their hem/onc to get them on a list. There's one local doctor of the list (of whom I asked a local community member with local medical knowledge) if she know of his credentials. When you start googling and look at his bio, his credentials and expertise don't seem anything beyond what the ten's of thousands of worldwide hem/oncs have.
And, as a new response from sandybeaches just noted, for all I know I may never need treatment, and it's only when I'm getting close to treatment decisions that all this becomes vital.... that is as long as I don't go along with some doctor (like mine) who is pushing me prmaturely. That's why having this community is so vital... from my post I got about a dozen experienced members who ALL supported me & my understanding of when to start Tx, pushing back on the current guidance I'm getting from the professional.
yes I won't. I know the pitfalls of chemo with possible transformations, MDS and other secondary cancers, but I also know that the newer targeted therapies mostly must be taken continuously, can have multiple side effects, are costly, and don't hold as much of a promise of getting to MRD negative or to a total cure for my 'type'.
But I keep watching and waiting optimistically for a combination therapy that will be proven to be superior in safety AND effectiveness and will allow us to end chemo as we know it.
Ive also had the "you worry too much". Well its my life not the docs. I think a respectful open minded doc is ideal but hard to find. Only a true CLL doc may know the details we know. The others have too much to cover.
agree. I know mine feels he is being kind and helpful, but I don't think he realizes he's being more kind and helpful to himself. After all, he saves a lot of time and energy by not engaging me. I also feel strongly he's avoided discussing my questions and concerns because, like you say, he doesn't know the details of cutting edge CLL issues. So I believe he'll duck and jive (or is it shuck and jive... or ducks and dives.... maybe all 3 ). In other words when I try to pin him down he ducks and then doesn't "cover" (kind of like a certain President I've been trying to mentally avoid for the past 100 days).
Get a CLL expert. I would not do FCR until you study all the possible ramifications.
Even if you do FCR and get complete remission there is a risk of MDS after 10 to 15 years.
Also study how people do On targeted therapies after FCR.
I had a similar situation where the hematologist from a non-CLL Place wanted to do FCR as soon as possible. I am very cynical about the billings they get with FCR versus writing a prescription for Imbruvica.
The doctor was trying to sell me on the risks of pleading and other things with Imbruvica. Then he found out I was 17 P deleted and said imbruvica was fine.
I am now on I+ V with a CLL specialist and doing well so far. Side effects have not been too bad.
V+ I clinical Studies are starting to happen at some places now.
Thanks. I too was concerned about possible motives for what almost seemed like his rooting for treatment to come. I also factored in a possible bias he may have, being steeped in the tradition of MD Anderson; after all when I started seeing him the center was MD Anderson, Orlando (now UF Health Cancer Center), MDA being the key institution in FCR's development & it becoming standard treatment and in retrospect a tremendous leap forward in effective CLL Tx.
So, I believe inherently there'd be a cultural bias. Then again, if a bias, it is widespread among almost all CLL experts I've read & listened to, save Dr. Furman.
But even that I can see as a bias as I imagine all these doctors', who've been involved for 20-30 years, naturally comparing past Tx outcomes of patients from the 90's & 2000's to those in this 'younger, mutated, 13q' category who've received FCR during the last 10 years. When they see so many current patients who look to be either cured or close to it, I can easily see, given their long-term perspective, how such a possible Tx outcome overwhelms the small inherent risk of a bad outcome. However, from the perspective of a patient who's been diagnosed in this era and sees the lower risk outcome of the new novel therapies compared to those of a myelosuppressive chemotherapy, the evaluation of that risk may look very different.
I did go to Moffitt and CLL Expert Javier Pinilla told me my doctor was wrong to have stated I was close to needing treatment but definitely right when it came to the treatment I should get. My sense is that those in the "good" group (with the "good" cancer) are mostly being advised to that they SHOULD receive FCR over the newer therapies.
My statement was probably too general. City of Hope told me that they have not done FCR in over 5 years. Others have told me as well but I need to verify further.
I appreciate learning that I can at least I can add City of Hope to Dr. Furman when I do my mental tallies of who advises against FCR and who advised for it.. So now, as far as I can tell, it's 2 against (3 if you include me) vs. everyone else for.... but again, and IMPORTANTLY, this is only when speaking of the subgroup of younger, treatment naive, mutated, 13q patients without co-morbidites where the vast majority of opinions about treatment are pro-FCR.. and even then I'm sure there are individual issues that mitigate that.
Watch this from Ohio state if you have not seen it. It is a great presentation I posted in the past. see below,
I was never offered FCR in the UC system even before it was know I am 17P deleted. It was never even discussed as an option.
Dear CLL streamers,
We are extending the time for the stream to be available to you through the weekend. We hope this will help everyone have a chance to view it at their convenience. It is recommended that you use either Firefox or Internet Explorer as your browser. (Google Chrome and Safari are presenting playback issues). Thank you for your patience.
go.osu.edu/TreatmentLandsca...
Thank you for joining us for “Ask the Expert: The Treatment Landscape for CLL”.
Thanks for that. Although I was googling for a long time to see if I could find a transcript instead of video - not wanting to manually search through 1 1/2 hrs of a presentation to find what he said about the treatments of FCR vs. Ibrutinib, et. al, I finally clicked forward every 10 minutes or so & found Dr. Awan's treatment presentation at about the 1:00 hr mark. It was worth it, because he stated that NONE of his patients are given FCR & so with Dr. Furman that makes 2 doctors I know of (maybe I should count your doctor at City of Hope as 3 but my guess is that the 5 years of not offering FCR may have been limited only to 17p deleted patients).
So now my unofficial count is 2 out of about 20,000 or so hemotologist/oncologists worldwide, who do not prescribe FCR as treatment for any of their CLL patients.
In my mind I think an Ibrutinib+Venetoclax trial would be an excellent one to be in. I've actually scoured clinicaltrials.gov to find just that and could never find anything that wasn't either across the country or in Europe, was only for relapsed/refractory, or had an age criterion. Then again I don't need Tx anytime soon (unless I listen to my doctor!!) so I just have to find one when I'm ready, hopefully many years from now.
City of hope said for all CLL SLL. Remember the Ohio State in the Cornell and other medical research centers are the leading edge And are the CLL experts for the most part. As far as I know the UC system can be included in that as well.
Now I have heard OSU's Byrd in a few panels separating out 13q deleted, mutated, & relatively fit patients as ones still suited for FCR. Same for everyone at MD Anderson as well as Kipps, Sharman, Brown... you know, all the "rock stars" of CLL research. And I'm sure there's been at least a dozen more I've read or listened to, who seem to side with FCR for patients with my type of the disease. As well the CLL Expert I saw at Moffitt was adamant about FCR over ibrutinib for me... when the time comes.
But I'm glad that you were able to open my eyes to a few more who are moving away from treating with chemo and the worrisome toxicity it introduces and arguing for therapies that are safer, and as everyone hopes, will be proven to be even more effective than chemo for ALL types of CLL in the coming years.
This patient patient will be wait as he watches for these specific types of trials with the promise of dealing with my specific type of trial (which I must honestly and gratefully say has not been too much of a trial at all thus far).
I wish you the best with your trial and the trial you've chosen to deal with it. I'll look to this blog in case you update us with your progress. Be well.
Reading these posts from USA and the difficulties with doctors, insurance and money I can see what a struggle and worry it can be to get good, affordable care there. We complain about the UK NHS system but moving around the system is mostly easy, although NHS funding for new drugs via NICE is not as fast as we would all like. Most UK patients don't realise how fortunate we are.
Yes. I definitely come down on the side that every other 1st world nation has long ago decided on - when it comes to their citizens' healthcare, it's a right not a privilege. Until Obamacare I couldn't get an insurance company to sell me a policy, due to a pre-existing condition that one pill a day had successfully dealt with. So I had to buy 'catastrophic' insurance, the type where you feel lucky you have it only if something catastrophic occurs (so if you get hit by a bus, in the moments you wake from your coma, you think, boy am I fortunate to have insurance).
But the right wing poisoned half the country with a lot of propaganda about this being a government takeover of your healthcare choices (like making sure insurance cos. covered everyone and to an adequate standard) at once both fascist and communistic. So about half the possible pool - mostly the younger healthier ones decided to forego purchasing a policy and instead incur a penalty, one that was delayed a few years). That of course defeats the idea of insurance, when those in the system who make costly claims overwhelm those who cost the system very little in claims.**
Anyway, now many rightfully complain about premiums going up even more than they did (and they did) and this year many companies have decided not to take part while those remaining have, as I said, shrunk their networks to save $$. But for me at least I - at least for now - have coverage (a few Canadian friends have indicated they'd smuggle me in their trunks and see if I could become part of their system; that is if Canada doesn't decide to build a wall).
**I can never think about healthcare insurance without the urge to ask Americans why the hell insurance is involved in our healthcare to begin with. It's not like fire, flood, or auto insurance where a vast majority insure themselves against circumstance that in a vast majority of cases will not happen; however, I think it's safe to say a vast majority of those with health insurance will find that they will need to see a doctor every so often.
What you say is so true and difficult to rationalise. I followed the Obama care with some interest as I couldn't believe that an educated democracy could vote against affordable healthcare for everyone.
In the UK, we complain about access to new drugs and the NHS isn't perfect but we do have choice and access to world class healthcare.
I go to Mayo in Jacksonville, see Dr. Chanan-khan, and get very good care. He is a CLL specialist and a very kind and respectful man. He does research and keeps up with what's going on. I would not hesitate to recommend him.
Thanks. It's a consideration, though if I'm gonna travel it would probably be to Moffitt in Tampa which is a bit over an hour from me; Jacksonville closer to 3.
If you have not already done so, consider applying to the NIH Natural History Study for those of us on W&W. There is a waiting list, but if you get in, you have access to some really fine doctors and facilities, as well as potential participation in treatment studies later. (There is no cost, and if/after you are accepted for the study, they will also cover some travel and overnight costs that you incur. ) Meanwhile I would echo the comments of others who are encouraging you to do whatever it takes to get a second CLL expert to follow you, at least as a consult, and absolutely before you enter treatment (if/when you actually need it).
I have a good hematologist who also has overseen studies for CLL treatments in our local center, but with all the rest of what he has to keep up on, I can't expect he will know all the latest on CLL specifically. Having that second expert available is important.
Getting involved with the NIH Natural History Study would be a great solution to your current problem. Dr. Asher Channan Kahn at the Mayo is well known and well liked by his patients. I don't believe that the "MD Anderson" sites are connected to the main center the way we expect that they might be, given the name
I would certainly do everything possible to find someone you trust now. Having to make treatment decisions with someone who you don't would be difficult, as would scrambling to find someone else.
Thanks, I always (secretly) planned to abandon ship as I actually started to approach decision time. Although I feel I'm not even close to that, I will definitely look into this.
Well I certainly didn't expect my self-congratulatory post to generate anything like this! Everyone's CLL is different - I didn't mean to imply that a high WBC was irrelevant, just that on its own it is (at least in my case) inot an indication for treatment. For the record, I have been on W & W for 3 years; when diagnosed my WBC was 314, so the rapid rise occurred before diagnosis. We are lucky in the UK not just to have the NHS, but also a medical culture which does not recommend interventions before they are necessary. My GP said that had I been in the U.S., it probably would have been a different story. Good luck with changing your medics and keep us posted.
You're fine. You didn't imply that. Your post just motivated me to write using what you had said as a jumping off point in order to pooh-pooh my doctor's pooh- poohing of my attempt to discuss the meaningless of my 60 WBC #.
I recall my when first diagnosed listening to a Leukemia and Lymphoma Society webinar where a doctor used an anecdote of a patient like you who had a high number to make the point of almost never using any one number to make a Tx decision, no matter how high. And I must say I've literally heard about dozens of other treatment naive patients since with numbers in the 300's....
BTW, that's another thing - the experts never advise to watch the WBC, but the ALC, whilst we wait, however, my doc is always focused on WBC.
Lastly, if you saw my above denigration of the U.S. health insurance system, in addition to my point about the illogic of health being something to be is insured, is the illogic of having the capitalistic system with it's goal of maximizing profits involved in health care decisions (what could possibly go wrong?). Then again it does provide much of the money for important research, and the government obviously isn't immune from making decisions based on cost, like what doctors can or can't prescribe. No system's perfect, but like in CLL treatment the solution may be in a combination of things.
I would not go back to that doctor. You don't owe him an explanation, a last visit, or anything. I would try and research around the area for a good doc. 75 minutes to see a CLL specialist does not sound that bad. I personally would just go there, especially on W&W where it could only be 2 trips a year. You have time, which is good. I had to move on from my first doc. At the third appointment I felt I knew more about current CLL treatments then she did (she is a generalist). I am 45 and other than CLL am in good shape. She was talking about getting a port and doing BR. I ended up going 8 months on w&w and into a trial (VI) with a CLL specialist.
Right now you are the "poster child" to have the potential "near cure" with FCR. You should at least have a lengthy remission. Many Hem/Oncs would recommend FCR front line for you. At 62 with no comorbidities, you should at least be a candidate for FCR for many years. It will be interesting to see how the treatment naive mutated population does on the new KI drugs. You should have a plenty of options when the time comes. If you are leaning towards not wanting to do a chemotherapy based treatment I would engage your doc and get their opinion on it.
I am a fan of Dr. Furman's lectures. His "Risk Assessment in CLL Treatment" helped me choose my treatment option.
Good luck with your decision. I hope you get many more years of W&W.....
I'm right with you on everything you say. I will join you in looking on with interest as results come in on trials for the treatment naive of the new targeted drugs alone and in various combinations.
One thing to keep in mind - you may be lucky enough to never need treatment with your type of CLL. Or if you ever do, other treatment regimens may have come out by then. I highly recommend you seek another doctor for your care, and perhaps consult with a CLL specialist down the road, when and if you require treatment.
I have a regular hematologist/oncologist who does keep up with what is going on in the world of CLL as we have had lots of discussions. There must be others like her that are well informed as well.
Keep well, and I hope you will find a doctor that you can relate to and is well informed in CLL care and treatment.
When I was diagnosed last June my WBC was 89,000 and has steadily risen to 140,000 at present. I have been seeing my specialist approx. every 6 weeks who has advised that until the other blood counts (haemoglobin, platelets, RBC, lymphocytes) decrease to below normal levels will be the criteria for commencing treatment plus any deterioration of symptoms I experience (I currently only suffer from fatigue). She maintains that a high WBC in itself does not meet this criteria. I think it would be in your interest to seek a second opinion. Best of luck!
Dr. Stephen Nimer left Sloan Kettering a few years back for University of Miami Cancer Center. I was his patient in NYC and he definitely does not overreact to WBC. Might be worth a trip to Miami.
Funny you mention him. After voicing my concerns after my first few visits with my current doctor in 2012, my cousin recommended Dr. Nimer, having been his classmate at M.I.T. in the early 70's (from this I can tell that Dr. Nimer's been in Miami for at least 5 years).
On the very same day his sister who also lives in Orlando, recommended Dr. Hajdenberg, who I spoke of above, because a friend who had leukemia raved about him. He was part of the center I was using - the then MD Anderson, Orlando and when I looked him up saw at least that he listed Leukemia as a 'specialty' and that he seemed to be the one doing clinical CLL trials.
As I mentioned I stayed with my current doctor after requesting the change & being rejected by the powers that be. I gave up the fight with the feeling I'd just wait till it got closer to treatment time & then make a change. This has come to a bit of a head as during my last 2 visits my current doctor tells me I AM close to treatment time, and that motivated me to write as well as revisit both my cousins' past recommendations.
Gosh, you really need to go to another specialist doc. I am on my fifth year of watch and wait. ALC is 67, and WBC is at 85000. no symptoms, no concerns...have blood taken every three months and still steadily progressing.
By coincidence had labs yesterday (no doctor visit) and my results today. My WBC went from 55 to 65 and my lymphocytes are 84% (but pro-lymphocytes are listed at 9% and this brings up question (I should probably post. What are the implications of having pro-lymphocytes listed and at such a high %? It often isn't broken out at all, sometimes listed as variant and when it says variant lymphocytes or pro-lymphocytes it's never been above 4%). Do you by any chance know about prolymphocytes (there's one item on CLLSA & I didn't quite understand it)? Anyway I added the 2 together for 93% which makes my ALC about 60; and since it was 40 a year ago that's a 50% increase in a year - not a 100% increase in q 1/2 year as the IWCLL "doubling time" criterion for treatment suggests.
But like you my symptoms are close to none. My only symptoms are 'tiny nodes', an occasional rash (don't know if CLL-related), occasional fatigue (don't know if CLL-related), that's about it.
So when my doctor finally says he'd like to start treatment, that'll be my cue to start my next visit with another doctor - one who knows the standards for starting treatment and hopefully someone specializing in CLL and on the cutting edge as well.
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