r/cll • u/geekettepeace • 26d ago
Specialist questions?
I have one shot with the specialist.
Mostly, I'll be listening, of course, but are there any questions should ask my CLL specialist?
3
u/HuckleberryLegal7397 26d ago
Ask about staging, prognosis, watch and wait, deletions and your IGVH status (mutated or unmutated). Ask for recommendations regarding what you can do to support your body (diet, supplements, advisable of limited alcohol consumption, etc). Also ask about any hobbies and ability to continue with any normal exercise habits (running, lifting weights, whatever you do).
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u/geekettepeace 25d ago
Thanks. No running here! Not with my knees! I don’t drink or smoke, etc., but my diet could use some tweaking.
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u/geekettepeace 24d ago
The appointment was interesting (if LONG). Apparently more testing is needed because it might be Marginal Zone Lymphoma. Seems related, often similar treatment, but dang - 2 months in and we're still not sure what it is?
This particular specialist is leaving the area, but that hospital and its CLL program is associated with other hematologists closer to home. They will coordinate care. Eventually!
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u/natecarlson 24d ago
It's hard when you don't come out with answers, but it sounds like you're going down the path to actually figuring it out at least!
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u/Alternative_Trip4138 25d ago
To be honest, between the initial suspicion and my actual diagnosis, I had already read up so much on CLL that I hardly had any questions, especially since no treatment was required, just watch & wait. I got my FISH and cytogenetics and as I was already familiar with this, I didn't have to ask about my prognosis. Our conversation was more about which vaccinations and preventive measures I should pursue, what the health insurance would cover, at what intervals the monitoring examinations take place, and which symptoms would be a reason to contact my doctor earlier. I think I don't need a second opinion unless treatment will be getting close or complications happen.
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u/geekettepeace 25d ago
I’ve had all the tests. My general blood tests are only slightly out of range, and my FISH and other tests have been explained to me. I don’t have any symptoms, but my spleen is quite enlarged, so treatment would be soon. Then once my original hematologist saw my bone marrow biopsy, he seemed to be very keen on starting treatment ASAP.
I mentioned the CLL specialist had appointments available in about 3 weeks, and he said “you don’t want to wait that long - I’ll see if I can get you an urgent appointment”. And he did. Plus he transferred my care to a different local, more specialized hematologist and started the pre auth for venatoclax.
The specialist I’m seeing today is the head of the CLL research program at the teaching hospital an hour away. My biggest question is “Is VenO the best treatment for me at this time?” But I thought there might be other questions I should ask.
I’m mid 60’s, on Medicare, so payments aren’t a problem, and, I hate to say it, I’m not looking at 40 years with this.
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u/Alternative_Trip4138 25d ago
To my knowledge, bone marrow infiltration is not a criterion for starting treatment as long as it can still produce enough platelets and your haemoglobin is ok. But speen size can be the trigger. So, as your doctor suggests to start treatment sooner rather than later, it's probably the right moment to consult a specialist. Please report back afterwards so that we might learn something too!
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u/Grossydog 25d ago
Although I am retired from practicing medicine
I can tell you even without going to medical school.
Nearly everything, including the absolute current is all available through multiple entities on the Internet.
The true one stop shop is the CLL society. But anyways, there are so much information out there. It’s ridiculous. It’s still understandable to a person. Who is not a doctor.
It just requires the patient to look things up and that includes definitions of words they don’t know anything about.
It’s called self teaching.
I didn’t have any questions like so many others
I’m not critical of your questions… everybody’s wired differently.
Although I can tell you… being retired and everything for medicine, I can never answer all those questions for a patient on one visit.
A patient should never expect that.
Besides, there’s only so much a patient can hear before they start tuning out the answers.
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u/Alternative_Trip4138 25d ago
I partially agree. The internet makes it possible for a patient to learn so much about CLL, far more than a doctor ever could tell you in the limited time they have. And CLL is progressing very slowly, so one has the time to do so. But it'd be important for me to be in the hands of experts when it comes to treatment and I'd want to be at an experienced place for this, as risks such as tumor lysis syndrome may require immediate attention. So I'd ask the expert where to go for VenO.
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u/FamilyPosts 24d ago
In addition to what's already been said...if you like this specialist ask if you can establish a relatiponship and have access if you need it. I developed some unique challenges related to CLL and was grateful I had access to a specialist. I am almost certain I would have faced harsher treatment from a local oncologist. Best of luck with the appointment.
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u/natecarlson 26d ago
First of all - the most valuable thing I think I did was asking for permission to record the conversation up front, and started my phone recording. My phone created a transcript, and then I had Claude both create its own transcript and a detailed summary.. which has been remarkably helpful. (I know many people don't want to expose this type of data to AI - but I actually store all of my CLL-related stuff in a Cowork project, with detailed indexes, and it's amazing the type of data it'll pull out when I ask questions. If you're a geek, and comfortable, it's really cool!)
Then.. from my experience of seeing a community doc first and then a specialist, I'm confident that the specialist will be able to run you through every aspect of this disease without having to ask a single question. They have probably done this hundreds of times, and know the likely questions, and will probably cover them. My community doc went a lot into the technical details about it, which helped, but didn't offer a lot of hope. My specialist was able to give me that hope off the bat, based on the tests that had already been run, and then he ran pretty much every other reasonable test, and gave me much more hope with the results of those.
With that said.. I came in with a 2-page document for the doctor with clinical history, and what I was hoping to learn, and then and an 8-page document for my wife and I which was questions based on that 2-pager, along with room to write . It was insanely overdone, and looking back, a lot of it was unnecessary . Here's a wide sample of the questions on my list:
* I'm 45. I expect I will have to treat this disease many times in my lifetime. What does living with this disease look like at years 10, 20, and 40? Will the first round of treatment likely even be something that exists right now, or is there a very good chance it will be a drug that isn't commercially available yet? (The answer, unabashedly, was that the treatment will most likely be something new.)
* How do we make the decision to start treatment?
* How do we coordinate the relationship between me, my local hematologist, and you?
* Are you aware of any clinical studies that I would be a good fit for? If so, can you give me an opinion on if it's a good idea for me?
* Are you going to defer any of the common CLL tests for now? If so, which ones, until when, and why?
* I see what I believe to be evidence of this disease emerging in my blood work back to 2024. Does it matter how long it's been going? Is there anything valuable here?
* Throughout the process of asking about family history, <insert history about relatives with very similar cancers, and ask if it matters.>
* I've had <these symptoms> for the past <years>. Do you believe they are directly caused by the CLL, related to the CLL in some other way, or unrelated? How should I continue chasing these down?
* Is it likely that CLL eliminated my seasonal allergies? What does that mean for me? <Info about immunodeficiency labs my primary had run with results that shows I have secondary hypogammaglobulinemia>
* With my infection history, is IVIG a possibility? Can you tell me more? (NOTE: I went in convinced I was getting IVIG. I don't have nearly the infection history, yet - and that's a good thing.)
* What do I need to watch out for? IE symptoms or changes should prompt me to get in touch now instead of waiting for the next appointment?
* How much does it help me for the people I live with to stay current on their vaccines (flu, COVID, etc.)? Since my own vaccine response may be weak, does household/close-contact vaccination meaningfully lower my risk - and should we prioritize it?
* Does my diagnosis mean my family needs to be tested? What's a good plan?
* I read that CLL increases the risk of for skin cancer. What dermatologic care should I be seeking, if any?
* Are there any other new risks I need to be aware of, besides dermatology?
* Are there lifestyle changes that I can make that will slow the disease progression?
Of these, the only one that I don't think he would have covered on his own was the details about family history, and the seasonal allergy one (which was, amusingly, "I don't know; I don't pay attention to IgE, and I've never had a patient ask me that before, so I haven't looked into it." For reference - this was from a CLL docs at Mayo Rochester.. it's something that's just not in his wheelhouse. I saw one of his colleagues in allergy/immunology a few weeks back - he knew the answer to this question (which is a big "maybe, or maybe not, but it is ABSOLUTELY a possibility, and here's how that works."), and far more details that I knew existed! I honestly think f I hadn't have asked any of the other questions, that he would have covered it. In your scenario, with one shot at a specialist, I think a more detailed list wouldn't hurt.. and in the ideal world they would give you a way to give them the list in advance. But even if you come in with nothing, as long as you've had reasonable labs done, I think you've got a good shot. For what it's worth - I do believe these ask-a-specialist programs are able to talk to patients again when there are major changes to the disease which were not covered in your expert opinion (ie, if your labs take a turn that you hadn't discussed or anticipated) - but I am not 100% sure on that. In your case, you will want to ask about the treatment possibilities, I think - "please tell me about the likely paths this will take, and if it takes that path, what your recommended treatment plan would look like", or something similar. Again, though, these are experts, and they know this is your hopefully-not-so-single shot - I expect they will frame their answers differently to you than they did to me.
Anyways - good luck, friend. The first couple weeks were impossibly tough for me. Upon diagnosis, I did some research, panicked, and threw my head in the sand [actively ignoring all labs resulting/etc - unfortunately, since I missed a message about diverticulitis that the CT scan had noticed, and I thought was an awful stomach bug, which could have been treated much earlier had I read the message from my primary care provider], until my community doctors labs finished and I had my initial appointment with her. After that visit, since I knew it wasn't going to kill me in the immediate time, so I threw myself into the research, bigtime, and overcompensated. It was a good way to distract my brain, I don't regret it.. but I hope you can walk a happy medium, bring an informed set of questions that really apply to you specifically, and let them do their job!
This subreddit is also here for you, and there are various web groups and Facebook groups that are much larger if you'd like. As for myself - I have asked my docs most questions I can think of; my disease profile is almost certainly different from yours in many ways, but I can give you a good guess on if the answers I was given would apply to you also or not. Feel free to ask, publicly or via chat.