I’d like to know if anyone else has issues with which doctor to see or call when different symptoms show up. I’m in w & w for 3 years now. For the last 2 weeks my fatigue has greatly increased. My arms and legs feel weak, I’m getting headaches, reduced appetite and generally cannot do many tasks without wearing out. I’m 69 years old and before this began was active and feeling energetic. Last time I saw my oncologist in May he told me he would probably not treat me because it would be worse than how I already. Getting information from him is very challenging and in 3 years he’s never asked once how I’m feeling or what I want. He says I’m depressed and I am with him because he offers no hope and shows no interest in me as a patient. I’m thinking of just start going to my internist and let her oversee my healthcare. Any incite or advice would be greatly appreciated.
oncologist : I’d like to know if anyone else has... - CLL Support
oncologist
You would be wise to see your PC first for most symptoms. While we have CLL, it is not the cause of many of our complaints esp. while on watch and wait.
Fatigue is, as you have read in posts, something most of us experience to some degree. I have been able to take daily walks and find when I walk I do not feel the fatigue. I do feel it when I am sitting doing nothing. I can read a good book and be distracted from the feeling of fatigue.
You also, could put in a call and report your situation to the RN in the Hema/Onco office and ask for some guidance--you may get seen sooner than your scheduled appt. or may get some help from the RN.
Please do not ask your internist to manage your CLL. There are roughly 200 blood cancers, so you are expecting rather much of an oncologist to manage your CLL, given they also have all those solid tumours to keep across, let alone an internist? CLL Society has a list of CLL specialists. Have you looked for a suitable specialist there?
Neil
It is my understanding that my oncologist is a Cll specialist. I’m confused!
That's fine if your oncologist has specialised in CLL, but from your description of him, he hasn't shown any evidence of specialising in the care of your CLL..
That is how I feel. When I ask for information about my status, he gives me a printout that looks like Greek to me.
Here's a link to the CLL Society's list of specialists. cllsociety.org/newly-diagno... Scroll down to the green bar and the click the drop-down arrow to select the state you live in (or even a state near you, if you live close to a border). If your doctor isn't listed there, he may not actually be a CLL specialist (or their list may not be updated).
You have every right to ask him if he is a CLL specialist. At a minimum, he should be a hematologist who sees a lot of CLL patients. But if he's not even a hematologist, he's definitely not a CLL specialist.
I'd also encourage you to ask for someone who can sit down with you and explain what the printouts mean. If they're all "Greek" to you, you could benefit from someone sitting down with you to help you understand them.
Wishing you the best
thank you!
Are you in a situation where you can select another CLL specialist to oversee your care? It is reasonable to have a doctor who is concerned about you and not just your numbers.
My CLL specialist always asks how I am doing in each visit. Then we discuss my latest results and what they mean.
It’s not the norm to ignore the patient. Maybe your regular doctor can help you find a CLL doctor who is more responsive.
That being said, CLL may not be the cause of your fatigue. Fatigue can be caused by many things and working with your regular doctor you may be able to improve your overall health.
Don’t be afraid to change doctors. You are a consumer of medical services and you may have some choices.
I suppose I could change again. The one I have now is my second Oncologist. My first one walked in on my first visit with him and told me he would give me 10 years and probably not treat me. I was so upset I never went back.
I can see why you changed!
It sounds to me you are seeing people at a general hematology-oncology practice. There are some very, very good ones, who read up about CLL. There are a number of people here who have seen a "true specialist" maybe once, some who have a "distant geographically" specialist work along with a local hem-onc, and some who are getting great care with a local hem-onc, in addition to those who only see a specialist. At a minimum, finding someone who will explain what's going on, and discuss the pros and cons of potential treatments, is needed. Good luck. If you lock your post so it's restricted to this community, instead of being open to the entire internet, I as well as others may be asking what areas you are in/willing to travel to, and make in-depth recommendations to who is locally/regionally available.
Hello Ymgaut
I am a big fan of having a CLL Specialist, Internist and Hematologist/Oncologist consult and all work together. There will be many issues come up that the Internist will help you through, colds, acid reflex and etc. My internist was the one who first told me I likely had leukemia and recommended my Hematologist/Oncologist. The CLL Specialist I found at the suggestion of this forum, which has benefited me by acting as a consultant to my team. Best going forward, blessings.
When was the last time you had bloodwork? Do you have copies of your previous lab results, do you know how the numbers relevant to watching your CLL are trending? That would be a starting point IMO. Your GP can do this for you. If anything seems like the fatigue is related to anemia, or if there are other abnormal *blood* results, that is something a hematologist/oncologist should be assessing. But the initial workup can be started by a GP.
If you aren't happy with your hematologist/oncologist, perhaps you can switch. I am finding it hard to believe that they are what *we here*, a knowledgeable group of CLL patients, would generally consider a true CLL specialist. Those people publish, do research studies, work extensively if not exclusively with CLL patients, and generally are kind, thoughtful, concerned physicians with equally kind, compassionate support staff of nurses/assistants on their team. And if not a true specialist, they should at least be kind, compassionate, and involve you the patient in any treatment decisions. Oncology practices (especially for-profit ones) will have someone in-house that they *refer* potential CLL patients to, so they are the "CLL person" in that practice, but not what most of us would consider a true *specialist*. They can designate themselves the "CLL person", but IMO a patient of a true CLL specialist would not be reporting the kind of experience you are describing. I am concerned about this, because of your report that your doc says they won't even consider treating you, and seem generally unresponsive/cold. Whether or not to treat is a decision a patient should be involved in. And in the US, it's a guaranteed, legal right to be involved in the treatment decision, even if the choice is "no treatment". But they cannot arbitrarily make that decision for you. Argue against it, yes, but not simply say "I have decided you won't get any treatment because I think it's not worth any benefit".
verywellhealth.com/patients...
thank you! I had blood work on early May. I may be scheduled again in November but I haven’t heard yet. My cll/sll doctor is a Hemotologist/Oncologist, but I think he is overworked. I scheduled an appointment with my primary physician to seek some direction from her.
That's a great idea. Ask for a "full iron panel" in addition to the "fatigue type things" Ghounds mentioned. Please ask your doc to be seen urgently, not in 2 weeks. Ask for bloodwork at a nearby Urgent Care center if your doc can't get you in quickly. The extra tests will save some time if this turns out to be CLL related, the docs will want to know exactly what type of anemia you might have. Plus, when I am tending towards anemia, I ask for "more tests" be run up front, so I don't have to keep going back, giving up more blood. There's a test called LDH your GP can easily run, which is also important in CLL monitoring.
I mention all this because you "suddenly" seem to have become symptomatic over a short time period of 2 weeks. If by some chance you happen to have a severe rapid anemia, this needs to be attended to quickly. It probably isn't a super emergency, but very very rarely it can be, so better to be safe than sorry IMO. Do you have people you talk to/will check in with you daily? Is there an Urgent Care center nearby you can get to, if you suddenly feel really ill? Going to an ER isn't great unless you are actively bleeding or having urgent life threatening symptoms, you will sit there for hours. An Urgent Care center will usually get to you faster if, say, you feel like you are going to pass out, or are having trouble walking. They can run initial bloodwork, to see if you happen to be so sick you need someone at the GP or hem-on to attend to you quickly.
I have sent the blood work up request to my primary doctor. And asked for an earlier appt before Nov 9th.
Thank you for your help and concern.
I am not wanting to "scare" or alarm you in any way, because it's not often that our symptoms are urgent. But because it's possible (Murphy's Law, y'know) I think being proactive & promptly addressing "previously unexperienced" symptoms is important. Like, I am prone to anemia,I get it intermittently, and I now know which symptoms to call my doc about right away. And of all the times I have "jumped" in the past decade, only once was it something that was a close call of me being hospitalized. But I have a neighbor with CLL , who went to Urgent Care and it was good that he did, his CLL suddendly decided to get very active. And now 3-4 weeks later he is on treatment, instead of waiting until his routine "every 3 months" blood draw this week. He had to get platelet infusions before starting CLL treatment but avoided a collapse and hospitalization. Again, an unusual reaction, not common, but it happened. So if I sound like I am pushing you to do something quickly...well, I am 
not because "I think you have an urgent problem", but "perhaps it's best to make sure it's not something urgent." I hope this makes sense!
Could you ask your GP for some bloodwork relevant to fatigue issues e.g. vitamin D, B group, thyroid function etc.
I echo the advice given above re trying to find another CLL specialist.
Good luck.
I have had CLL for at least 6 years. I had the fatigue and still do sometimes. I try to walk 4-6 miles a day and that helps. I feel better and I am in better shape health wise. I sleep 8-9 hours every night. I don’t eat meat, no chicken, beef, pork, eggs or milk. I drink Almond milk and generally eat a plant based diet. My swollen Lymph glands have gone down significantly. Remember you are 69. (I am 70) you need more rest. Best of luck.
I’ve been at this 10 years and I would say you need your Oncologist to take the lead of your situation, and, I would say you probably need a new one. Given age and symptoms, the likelihood that W&W is over is a very big one. Granted, you do NOT want to have the old cytotoxic chemo treatments, but a simple course of Rituxan over several weeks might fit your bill, that is where I started, and it kicked the can down the road for me about 18 months, at which time I started a clinical trial whichI was in for 8 months and had to leave because it was making me sick, but I had 30 months of progression free time because of it.
Looking back over my ten and a half years dealing with this, I would have to liken the medical overload to someone who has a pretty significant case of diabetes. The last three years were also the worst and best at the same time, because Ibrutinib took me to an absolute low due to side effects, but after the low I got onto Venetoclax and six doses of Rituxan, and I sit here today cancer free.
So with a combination of Rituxan, the Brutinibs and Venetoclax, you can’t guarantee yourself to not have some low points but you can certainly take the drugs and manage and possibly eradicate the disease without undergoing bodily transformations and hair loss, etc.
Time to find a doctor responsive to your needs .... and yes, easier said than done .... it'll be worth the time and effort, as well as your peace of mind.
I am being treated by a haematologist specialising in CLL.
My oncologist just effectively dropped me sayng he has no availability in 2023!
What does it mean to be 'effectively dropped'? That sounds very disconcerting - other than presumably he considers you to now be in better health than his other patients. I presume you are finishing up your Gazyva infusions about now. Did your oncologist recommend how you should be monitored from now on?
Neil
Effectively dropped because he offered no appointments in 2023. Dropped because he thinks my CLL has turned more aggressive and he doesn't want to worse his stats???
Have you reached out to CLL Society for a second opinion?
cllsociety.wpengine.com/pro...
Neil
good idea although this guy is on their list of experts - they might assign me a different expert??
Explain your circumstances.
No, I’m starting with my Internist to direct me. She is wonderful and will do blood work related to my symptoms.
Your internist is indeed the best person to investigate the reason for your fatigue. However, if she concludes the reason is your fatigue, please see a CLL specialist. Sufficiently severe fatigue is a valid reason for commencing treatment.
Neil
I would agree with SofiaDeo re the sudden onset of fatigue. Sudden onset can occasionally be haemolytic anaemia where anaemia can come on rapidly, and is linked to cll in some people. It can be sorted. I wouldn’t feel shy about just ringing your GP and asking for urgent appt for blood tests as you have sudden onset fatigue and are worried about haemolytic anaemia. Get your other tests like iron and ferritin too, but mention HA. A lot of doctors forget that, even in watch and wait stage, some patients can get something like HA that needs to be checked urgently. It is 5 months since your last test. If you just gently suggest you are worried about it they will probably respond quickly.
They are likely to be able to do the suite of bloods you do for fatigue at same time.
Completely agree with Neil about looking at whether your oncologist is a CLL specialist. You do need to find the right fit for you. I was miserable until I did. Most specialists who send you back to primary care expect to be alerted by primary care if there is a problem so don’t feel shy about saying it’s urgent.
Good luck with your search!
I agree with cllady. I would see your primary care doc first in your situation, to check out thyroid, epstein barr, iron levels, other things that can most definitely cause this fatigue. Depression itself can cause it (chicken and egg cause the fatigue can cause depression). This is not to take the place of your CLL specialist -- but if the primary care doc is any good he/she will have idea of what they can do vs. CLL doc. I have been in the same situation sometimes, with other things I don't know whether CLL or not. I am often referred to my primary care doc with these questions. So I'd start there and if doc really good, may help in the interaction with your specialist (in the best scenario).
Thank you, that is what I’m doing.
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