Has anyone here taken advantage of CLL free consultation? In light of just being told I have aggressive cll and the feeling my oncologist is dragging his feet or maybe not familiar or taking me seriously I just started the process for second opinion from CLL society. I want to see another dr, a specialist in this disease, but hubby is convinced that my oncologist is doing all he can....we shall see what info I find and who wins the battle of seeing a specialist..
cll society 2nd opinion: Has anyone here taken... - CLL Support
cll society 2nd opinion
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DianeSH
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Tell hubby your local onc may be "doing all he can", but with rare diseases ideally one sees a specialist in that rare disease, when possible.
If hubby had a heart attack, would he refuse follow up with a cardiologist? Even though his GP would be "doing all he can"? Or would he want to see the cardiac specialist at least intermittently, with the GP doing some local monitoring & being advised by the cardiologist?
If you are fortunate to be able to be seen by a specialist, get that opinion. Routine as well as emergency bloodwork can be done by the local hem-onc. Before I was able to arrange seeing a specialist regularly, I had a few local hem-oncs who welcomed input from a specialist.
FWIW, as a woman who occasionally felt docs weren't "taking me seriously", I'd switch or push to be taken seriously. This bias is a known "thing", and I won't put up with it.
Dear SofiaDeo
I just had a consult through the Cll society program. It did take a few weeks after applying to be matched to a consultant. I was very pleased with appointment. I was concerned since it’s only 30 minutes. There was no need for the concern.. the doctor I was assigned was extremely helpful.. she made suggestions that I can take back to my local team. The most important part to me was that she felt my doctors, who are not considered experts, have done everything she would have done. She saw no need for me to see an “expert” for treatment. Gave me confidence I needed to continue with my current medical team.
Great news! This is like my cardiologist analogy. A cardiac patient may be seen, and told "your GP is doing fine, you don't have major problems/ concerns, you don't need intensive monitoring by me". The idea IME is to find out whether or not you have some oddball thing that concerns a specialist, and needs different monitoring.
So an initial appointment with a specialist is generally recommended. To find out *if* you have something unusual. If not, great.
Hi I think it’s always wise to get a second opinion pre treatment, even if it’s just for reassurance, I did and it paid off for me.
Ann
Your body, your call (with all due respect to hubby)
I'm sorry to hear that you've been told you have aggressive CLL, it sounds scary. Can you explain what they meant by it? That is, did they say it is an aggressive type of CLL, or your CLL has turned aggressive? Moreover, what evidence did you current oncologist provide you with?
Different types of CLL do have different prognosis that can be more inclined to become aggressive. Or, was the doctor commenting on test results or a condition that is happening and the doctor is identifying your CLL is acting aggressive.
The word aggressive just seems too broad and vague. By all means get a second opinion, but get your value's worth from it.
My case is not as complicated as yours, so I was told to save my free second opinion until treatment time.
But, you deserve a clearer answer before you go forward.
he just said I have the aggressive form though at this point I am still stable and in wait and watch...I cant thank yu all enough for your notes and reaching out.
I would suggest that you let him know that you need clarification. It is your right, and in a way, your part of a good doctor/patient relationship to understand exactly what each other mean what was said, it guides further treatment choices and allows you to plan for the support care that will take place as you progress through this journey.
Do you have a spose, adult child friend or relative willing to accompany you on these visits? You need an advocate who can rephrase either your questions or the doctor's statements. Your doctor's superior knowledge requires them to in turn, translate or re-explain any uncertain phrases or future plans.
Hi Diane:
I understand why your husband thinks your oncologist is doing all he can. I thought the same thing when I started this journey and it was a big mistake. CLL is complex and you really need a specialist. My initial 70+ year old Harvard educated hematologist turned out to be a disaster. Read my old posts. I wish I pursued a second opinion. You are on the right track. Get a second opinion😁.
bkoffmanCLL CURE Hero
Let me know how I can. A second opinion as always a smart move and having an expert on your team has a survival advantage. Stay strong, we are all in this together. Brian Koffman CMO and EVP, CLL Society
I just completed the initial info to get the opinion from CLL assoc..I am waiting to hear from them as to what the next step is. The first info was very general
They will contact you about how to access and consolidate your medical records to get the most out of the consult. Once that is done, they will schedule a ZOOM call with the expert.
this disease is different and requires an oncologist/hematologist. A doctor experienced with CLL because others don’t understand it as well. You’re right to see a specialist in this disease. It’s much better for you in the long run.
Definitely get a second opinion. That’s not to say your current oncologist is not up to the task but there is really nothing worse than having doubts, especially when it’s your health on the line.
I'm not going to get my soap box out to go on about the medical industry, but I will say that peace of mind is absolutely invaluable. If your local doctor is indeed doing all they can, I see no harm in having a second doctor confirm this. Aggressive tends to mean fast growing or likely to recur, so time is of the essence. I don't think one can overreact to being told they have an aggressive form of cancer. Your doctor doing his best to his knowledge doesn't mean a different doctor couldn't do better. And if you are considering a second opinion, you clearly don't feel like you are receiving his full effort.
Scenario 1, the specialist confirms your local doctor is providing you with the gold standard treatment, so you can proceed without worrying that something is being missed.
Scenario 2, the specialist informs you of better treatment options that are time sensitive, and confirms that you were right to want a second opinion.
Either way, it will be a worthwhile enquiry.
Alternatively, you could post a bit more about your condition here and have others weigh in on whether your doctor's response has been appropriate.
Whatever you decide, make sure it's a decision that you chose, not your husband or anyone else. Your health is too important to let others talk you out of following up on issues that concern you.
thank you.....I have received many notes and every one of them is recommending the specialist or at least further research...as I have said I am waiting for the CLL ASSOC to give their opinion but am leaning more and more towards a specialist though it means hours of travel.....
The main hurdle is getting the correct diagnosis. Most hospitals will follow standard industry protocols, so the actual treatment you receive will be the same wherever you go.
Have your lab work reviewed for a second opinion by the CLL Association and if they agree with the current diagnosis and treatment plan, you will be able to do your own research to make sure your doctor is administering your treatment correctly.
As long as your doctor isn't being dismissive of your concerns, there's no particular reason to travel to see a specialist, because your local doctor will most likely consult with a specialist if he isn't sure about how to proceed anyway. At least that is the way they operate in the UK.
But DianeSH is in the US, where chart information is not centralized and doctors can and do sometimes "do their own thing" while getting offended if a patient even asks questions, let alone asks for a second opinion. The "health care team" concept that arose in the mmm 1980's? has been adopted by nations with socialized medicine, but in the US there are still pockets of Lone Rangers. Even young Lone Rangers, not all institutions have great teams; I can readily imagine someone having to be on dysfunctional teams during residency deciding "forget this" and chose individual practice.
I vividly recall moving across the country to take a position as Oncology Pharmacist at a hospital. They had a "health care team" setup in the sense that early every morning we had a meeting to discuss the days' patients, inpatient as well as outpatient. Who had been doing well, who was getting dose adjustments, any calls regarding problems a patient had made in between visits/admissions, changes that preop bloodwork would have.
At the end of my first meeting, I remarked to the Charge Nurse that day "so just let me know the order you want the meds when you figure out the schedule." Patients often had various tests, radiology exams, etc. and their chemo had to be configured around these appointment. The Outpatient Charge Nurse had given me a list of the expected order that day, and they would then call throughout the day to tell me 1) that patient had checked in so I could assemble things for mixing, and 2) labs came back, and that dose was a "go" or if there was an adjustment.
The Inpatient Charge Nurse was dumbfounded. Up until I worked there, the Oncology Pharmacist made things in the order they felt like. There was no coordination. Previous pharmacists had apparently just sat in the meetings. It made it very hard to do good patient care; patients were late or missed other department tests, because they were still doing chemo if their med happened to arrive earlier. Nursing breaks/lunchs were chaotic, no one knew if they would have to stay through a scheduled break because they were in the middle of a patient. Or someone *had* to leave and care was passed off briefly to someone not expecting it. At that time, it was the docs commenting mostly on whether or not any side effects were possibly being caused by the meds, pharmacy apparently simply just"mixed them up."
Needless to say, pharmacy actually beginning to work as part of a team affected things to the better. One of the nurses in that group received the state association's "Oncology Nurse of the Year" award.
So finding a good practice, whether that is intermittent input from a specialist or not, is key. If a patient feels something "off" about a doc, ideally they find one they are more comfortable with. Some patients ask questions, some patients want the doc to do all the work & are willing to let the doc do so. Neither is wrong, although as Dr. Koffman and others have pointed out, the more informed you are, and the more you are willing to be involved in your care decisions, the better the outcomes tend to be.
I just had a second opinion offered through CLL. It was very helpful. I am being seen by hematologist/oncologist at my local health system. It was reassuring to hear the CLL expert say that my team was doing everything she would have done, and she didn’t think there was a need for me to see another expert closer to home .
She also gave me good suggestions concerning a couple of issues I am having.
All in all,gave me more confidence with local team and my treatment.
My original hematologist missed the 17p deletion which made me quickly spin out of control. Fortunately, I knew what I was looking at and pushed to see a specialist. It took me two months to get a second opinion appointment. Use bkoffman to help. If it's aggressive you don't have as much time as others would to wait.
I have the same deletion but the oncologist is only talking of the TP53...getting ready for my future and fighting...thank you
A specialist will get you on the right meds and you will be fine even with the aggressive markers. Also for what it's worth aggressive CLL is actually a diagnosis beyond TP53 and it's very rare. I actually have it 8 years into this and I only know because I recently had a lymph node biopsy and it was this not Richters.
leave it to me to have something rare 
In my search I see there is a specialist in Ithaca which is about 1 1/2 hour drive......think I will look into seeing him after CLL ASSOC gives me their opinion..
Join any & all local CLL Society support groups, actual patients will comment on who they like, what their practice is like, etc. At least some of the meetings are Zoom, so you don't have to drive anywhere.
Then you could possibly do what a number of us do, use a local most of the time with intermittent visits to the specialist. Good hem-oncs (good doctors of any type) welcome input from other specialized docs when appropriate. My original local hem-onc would not start the protocol I brought him from a research specialist, before a final specialist appointment to verify I truly was OK to do this protocol they had never done before.
I agree with the other posters. A second opinion thru the CLL Society costs you nothing but will probably give you at least peace of mind or set you in a new direction. My BIGGEST mistake in my 24 year journey with CLL was not getting a CLL Specialist/Expert on my team in the beginning. By the time I saw one, I was close to dying. Mainly because I had developed a complication (AIHA) that was not being addressed by my first doctor. The Expert knew exactly what to do, and he has been part of my team for the last 17 years. (Even though during that time I have also consulted with 2 other CLL Experts when I needed to change treatments).
As a side note; I have most of the poor markers, 17p, TP53, 11q, unmutated, complex karyotype. And yet here I am, on my 7th treatment, alive and well after being diagnosed 24 years ago. Aggressive or not, the changes in the CLL treatment landscape over just the last 10 years is nothing short of amazing. Hopefully you will live a long life even if you do need treatment.
Terry
thank you so much for heading me in the right direction and affirming what I should so. As I said before, I am the one that noticed the initial anomaly in my regular blood tests and I am the one that asked for the FIH test though he did not see a need for it. I will wait and see what CLL assoc has to say before I take the next step. Supposedly I am still stable. We find out in a couple of weeks with the next blood draw for another dr. I am so sorry you had to go through all those treatments and I dread those but I am not ready to give up the fight even if I will be 77 soon. Thank you so much for your support and taking the time to advice and lend me comfort....stay well...
well I just had blood tests done so when CLL ASSOC asks for my records they will have the most recent. My white blood cells went down but then my red did too except the red is still in the normal area. I did not see any wide variances since my last blood work so I guess for now i am stable which gives me the time to get the answers and a specialist....I am wondering why they are looking for a clinical trial when I understand there is treatment that can be started now (aggressive CLL)...thanks for sharing you history with me about being a survivor of the aggressive stuff...I needed that. ....My dentist is rushing all my dental work so that will be out of the way whenever therapy of some sort starts.....can I ask if your therapies were horrible or tolerable or ok?...
Remember that in CLL they look for trends, not just one test. It is very common for results to vary between tests. I don’t know your complete CLL history and I can’t give you medical advice but I will make some comments. Just because you have ‘aggressive’ CLL , (however that was determined ) may not be enough reason to treat if there are no other B symptoms like weight loss, fatigue, night sweats, rapidly increasing ALC, decreasing platelets and hemoglobin, enlarging lymph nodes and spleen. The decision to treat is based on all of these things combined. This is why a second opinion from a CLL specialist is a must before treatment. There are of course unique circumstances that require faster treatments, but usually this is not the case.
After my chemotherapy treatments the next treatments were really not bad at all. The most irritating side effects were joint pain problems and GI issues but neither were debilitating. My current treatment, Jaypirca, has almost no side effects but can only be given after you have relapsed on a BTK inhibitor AND a BCL2 inhibitor.
The reasons to recommend a trial to a patient vary. You may have all the right markers, be the right age, have limited or no co morbidities I fully support clinical trials and I have been in 3. I found that you were more closely watched, but they usually require more patient involvement and tests. They are also usually the latest treatments or combination treatments. This is ALWAYS a personal choice. You never have to join one unless you agree
Please keep us posted
Terry
DianeSH, please consider locking this post. It is open to the entire internet. I am curious about the use of the word "aggressive" by your local hem-onc, since this usually refers to disease that lab values are changing rapidly, as well as the patient reporting they feel unwell. But I don't want to get into a discussion of *exactly what are the test results* with this post open to the entire Internet.
If you edit the post (look at the bottom) there is a radio bar with "Share" giving the options "everyone" or "community only". "Everyone" is the default, and is the entire internet, since this website is "HealthUnlocked." By locking it to this community only, any conversations are private.
Alternately, you can edit your profile (tap on our avatars to see examples) or just make a new post. Because I am not understanding "aggressive" if your labwork hasn't changed much.
If the doctor is talking about "prognostic indicators that have worse outcomes", please know that much of the published literature is older, the new drugs are changing statistics, and regardless of your "poor markers" you may not need treatment urgently. Based on what you have said so far, your CLL is not an "aggressive" variant as far as I can tell.
thanks for the info on locking........I have the dreaded T53 with p-17 deletion combination and was told by my oncologist as well as my research that this is an aggressive form . That being said, I had blood tests yesterday and they were good, or as good as they can be. My WBC went down a bit but so did my RBC slightly. All results except for lymphocytes, WBC were in the normal range. And I just got a phone call from the oncologist to say he is very pleased. So now we wait to see what the CNN ASSOC says. I had two root canals done yesterday and was whipped when i got up this morning. Next week i spend 3 hours in the chair and wonder how I will be able to drive home...I try to consider my time in the chair as my rest time, my nap time. We will see how it goes...anyway, for today I have goodnews.
FWIW, I also have the dreaded TP53 with Del17p combo, plus others. I was diagnosed early 2011. Mine, when active, is considered "aggressive" with a lymphocyte doubling time of only 4 months. If your lymphocyte count hasn't doubled within 6 months or less, it's generally not considered really active/aggressive.
have you had any treatment yet?
Tap on my avatar, you will see my treatment journey. A number of us have done this, you can check out various people. This information we put in our Profile Bio.
Tell you what, *I* have what is considered aggressive disease; when I was first diagnosed they thought I had an acute leukemia. I was getting seen urgently, numerous tests. Not a diagnosis, then some months later bloodwork. If you got this diagnosis and various lab parameters aren't changing drastically, and if you aren't feeling really awful, I question how "aggressive" your variant is. Historically harder to treat/poorer outcomes? Yes. But the statistics are changing, and I don't think the literature has yet caught up with how these new drugs of the past decade have improved the statistics.
I'm glad we have resolved that you have prognostic markers that used to be associated with difficult to treat CLL when we only had chemoimmunotherapy treatments such as BR and FCR, not aggressive CLL, because it didn't appear to me that you had aggressive CLL. I'm glad that SofiaDeo raised this question.
Please let us know the outcome of your free, CLL Society arranged, expert access appointment.
Neil
Your doctor may be doing all he knows how to do, but community oncologists do not always keep up with treatment advances in CLL, which have been moving rapidly. We have to advocate for ourselves. Yes, see a specialist.
I am waiting for the results of how I make out with the CLL assoc before I take the next step of whether I seek out a specialist or not. I am in this battle alone it seems as I have told my family and no one seems upset in the slightest. No response, nothing. Support is invaluable with any kind of serious illness..thankfully I have this group..
Just to clarify for others - it is CLL Society at cllsociety.org/
Glad you are taking steps to advocate for yourself. All the best to you.
yes sir (mam?)...I agree....My oncologist deals with all types of cancer so how can he be well advised in this. The fact that it took him over a month to get back to me with the results and then still not knowing what to do.....and a clinical trial? I understood there were treatments for this even while in the watch and wait. I have an aggressive form. Do I wait until it explodes and then try to deal with the damage? Nope!
Hi Diane!
Absolutely see a CLL specialist!
It’s not optional, especially when you have more problematic CLL.
I had a local oncologist who thankfully got my CLL diagnosis correct, and then I saw my specialist, and I can sleep better knowing she’s seen everything CLL can do and has the knowledge to deal with whatever comes up.
Best to you!
Paula
(Surname removed by admin for privacy reasons - healthunlocked.com/cllsuppo... )
tank you Paula....what would I do with this group...I seem to be in this fight alone and all the words of encouragement I receive here are such a help. Can I consider the CLL Assoc opinion seeing a specialist or is that just a step in the right direction?
With all due respect to your husband, you are the one with the disease, not him. By all means, seek a second opinion.
Agree with the boatload of replies to go get that “free” CLL consultation and it appears you do too.
Hey …. and if you end up getting a totally different opinion/approach whose to say why not get a third expert opinion to serve as a “tiebreaker”?
After all we could be talking a life or death decision?!
And … here’s yet another option to consider … if you let us know the area you live in (not specific address of course) n post n ask if anyone of the many thousands of CLLers on this forum know of or is seeing an excellent CLL specialist that practices say near your zip code area, you’ll likely get replie(s)! Talk about a great resource this forum is (and the wise folks in it) regarding knowledge of all things CLL… that it is!
So another option to chew on, if you need it, especially if your needing a third opinion? … who might know of a great CLL specialist in my area? Who do you call ? … suggest post n ask … “HealthUnlocked members “CLL busters”! You’ll likely get CLL specialists suggestions.
Agreed, the CLL Society has local support groups, many meet by Zoom, and they will know who locally is recommended, their practice style, do they take X insurance, etc.
I have been pondering the "aggressive CLL" comment. This is concerning to me, because I have only heard the term "aggressive cancer" in the setting of *acute* cancers, and only in CLL with respect to *how a person's variant behaves*. How on earth could any doc, even a specialist, state that your newly diagnosed CLL is going to be "aggressive". There is some kind of misunderstanding or misstatement.
That being said, if this doctor meant to convey "you have the markers that tend to need treatment sooner rather than later" or "you have the markers that tend to have poorer outcomes" all of the articles this non-specialist most likely read, are older data. The newer treatments are changing the statistics, and anyway outcomes are not guaranteed. Some people expected to have indolent disease don't, and vice versa.
Please do consider a specialist. Without knowing your region of the US, none of us US folk can begin to offer suggestions of who may be close by. And FWIW, there was a recent post discussing the NIH's trial involving CLL. If getting to Bethesda is an option, please consider this. If nothing else, whatever they say/recommend should have some weight with your husband/local hem-onc. The NIH study I think has some travel funding, there also may be some from LLS.org as well as American Cancer Society. Some states and counties also offer travel help, like a shuttle service.
I like your idea and will probably do that.....I live in central NY between Oneonta and Binghamton
I did get a second opinion through the CLL society. The response was fast and they scheduled an appointment within one week. The CLL specialist agreed I could wait with treatment and strongly advised me to see a CLL specialist for continuing treatment. Luckily I had a choice of two excellent doctors about an hour and a half away from me.
Hello DianeSH
I have an outstanding H/O who takes very good care of me, but I also enlisted a CLL Specialist 6 months after being diagnosed with CLL and it has saved my beacon a couple of times. I see my H/O every 6 weeks and my CLL Specialist every 6 months, they work well as a team with my GP. Blessings.
I am afraid I will offend my oncologist by searching others but I cant worry about that...thanks for the input...right now I am only seeing my oncologist every 6 months...
Yes, I used the CLL Society 2nd Opinion service. I was very pleased. In addition, I am switching my care to a CLL specialist. I wish you well.
I also had a consultation with a specialist through the CLL Society. It was good to know I’m on the right track.
I was able to submit 5 questions before my Zoom meeting with the specialist.
Part of the ongoing fight we all face is being our own best advocate, that sadly means educating those you love about your type of cancer. Have patience with them in this process, (really hard to do while you are trying to navigate what all this means yourself) but know that the statement of stable and Watch & Wait assures you of time to get your ducks in a row. This disease really is a marathon and seldom a sprint, though it can become one. I was misdiagnosed 14 years ago, sought a second and have been doing W&W since then. I just switched from the Lymphoma dept to the Leukemia dept which required a new doctor, new opinions about how my SLL is acting, again I had to be my own best advocate, you will become even more confident in how to be that for yourself and that will add to your inner strength on your CLL journey. Hugs to you-you got this!💞
great advice and so true....I feel I am in this alone. Whether the family is in denial or what i dont know. I finally got hubby to at least talk about a specialist yesterday. I point blank told him about my condition and what the future might hold, that this is or could be serious. I told him of the conversations I have had with many from this group yesterday and think I have convinced him of my taking the next step. I filled out the initial form for the CLL assoc consultation and am waiting to hear from them about the next step. Then I will decide which way to go and which specialist to see...and yes being stable and in W&W gives me time to find out a lot about this and make my plans...I thank all of you for your input though i did not address each one of you...you are my angels and my support team right now
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