**Please Help - CLL Fatigue - Bloodwork Normal - Need to Work from Home
Hello everyone. I was diagnosed Thanksgiving of 2021 with CLL when I was 50 yrs old. They found slightly enlarged lymph nodes on a routine mammogram that they ended up doing a biopsy on. I had been feeling run down and just "old" with bloodwork that had been "weird" but it was just after Covid19 pandemic, and no one was really doing a great deal of diagnosing.
I am currently doing "watchful waiting" as my treatment, which I am very happy about. I do have symptoms like night sweats, excessive sweating, weight loss, fatigue and just an overall feeling of feeling rundown. My bloodwork is run every 3 months and I have had a couple CT scans that all are reporting "normal" now. In the beginning when I was diagnosed, my ferritin level was 5. Had a few iron infusions and nothing else.
I have since been asked to come back into the office 3 days a week 830-5 (I work from home 2 days). It has added about 2 hrs. extra to my day now with travel and such. I asked my Oncologist if she would provide me with a note that I should have a reasonable accommodation of only working from home. I was not asking to be taken out of work because I love my job, but that the fatigue I am experiencing after a full day in the office is very debilitating. She flat out refused. She told me that my fatigue is not CLL related and that she will not be providing a work note. I have had all the other tests to confirm that I don't have any other conditions such as rheumatoid arthritis or anything else. Everything else is clear.
Does anyone have any advice as to what I can do? Anything that has worked for them with their fatigue and their jobs? I am desperate and need some help as I really don't want to quit my job that I have been at for nearly 5 yrs. I can't be the only one that is made to feel ridiculous when I ask for a doctor's note.
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HeatherW71
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I would suggest possibly going to your GP rather than your specialist,if you feel that you’d definitely benefit from working from home full time,and your GP is aware of all the debilitating effects CLL can have on your body both physically and mentally ,I’d like to think working from home was a viable solution.Good luck!
Hi Heather and welcome to our community. I see that you have just joined.
I strongly recommend that you find a specialist that has plenty of CLL patients, ideally a CLL specialist or at least a haematologist. That your oncologist has denied your fatigue could be due to your CLL is not an encouraging sign for someone that you'll be depending on for decades of medical support. Oncologists generally specialise in solid tumour cancers. Blood cancers are rare, so oncologists generally don't have the time to keep up to date with the latest developments in the management of CLL, perhaps unless they happen to have enough CLL patients to make it worthwhile. Otherwise, there's a tendency to lump all CLL patients into a common group with about 20 other chronic B cell leukaemias/lymphomas, so you are at risk of suboptimal management. CLL treatments have undergone a revolution in the last 5 to 10 years and surveys have shown that there's a risk of early and or incorrect treatment with specialists who don't keep up to date. A couple of our US volunteers have actually gone through this. It's perhaps not a good sign that you've already had a couple of CT scans, because CLL specialists avoid them unless they are absolutely necessary. Given you were diagnosed via a node biopsy, you may have the small lymphocytic lymphoma expression of CLL/SLL, where the cancerous B cells prefer the spleen, nodes and bone marrow to the blood, in which case CT scans make more sense, but they should still be used judiciously.
With respect to your request for a note to support your continued participation in the work force, which is not only reasonably essential if you are to be able to pay for your medical insurance, but also good for your overall health, that's a very disappointing outcome. You haven't shared your "weird" blood work, but even so, a CLL specialist knows that CLL related fatigue doesn't have any indicators in regular bloodwork tests. As you've observed, if other causes of fatigue have been ruled out, it's probably the CLL/SLL - so reasonable accommodation should be supported. It's actually enshrined in legislation in some other countries! The other factor that might need to be covered in a doctor's note is that given your CLL/SLL diagnosis, you are by definition amongst those who are immune compromised, so your workplace should be reasonably accommodating about helping you minimise your risk of infection from your co-workers, such as your workplace setting with respect to how close you are to colleagues, ventilation, mask wearing and working from home.
In the USA, the CLL Society can provide you with some very valuable support, such as one free video conference with a CLL specialist, possibly access to a local support group and a list of CLL specialists, so that you can find one hopefully close to you that is more knowledgeable than your oncologist. Finding a CLL specialist close by isn't always possible, so some members travel perhaps once a year to a CLL specialist and see their local specialist for their regular appointments and for any urgent matters when travel isn't possible/practical. Some even manage the best possible outcome, where their local specialist works with their CLL specialist to ensure that you are provided with consistent support through both specialists.
Here are some relevant references from the CLL Society:
I'm so overwhelmed by your knowledge and the very thoughtful response to my question. I feel "heard" here and at times... that's a big part of the process.
I can relate to the fatigue aspect, the need to shorten ones day because of it, and that removing work commuting is a good part of the management strategies.. not to mention the reduction of being over-stimulated in an office environment (which is also quite tiring).
I work full-time and 80% of that is remotely from home, with lots of time spent on video calls with people replacing in person meetings. I also have no desire to not be able to do my job, and have had to do some adjusting. Fortunately, I've not had to ask permission to do that or to supply a doctor's note. However, I suspect I wouldn't have too much trouble with that.
At the end of last year I had to change Haemotologists and I didn't like that as I had good rapport with my previous one and was apprehensive. I didn't totally gel with the new one, but didn't feel it was yet of an issue while in watch and wait and with good reasons still to not treat. But will consider another opinion if/when it comes to that and I don't think she's in my camp.
Her summary report of the first visit with me mentioned something like... "Sue's biggest complaint is fatigue, and this has been documented since 2019 and while I could not say this was due to CLL, I also could not rule it out". She didn't know me very well then, and I thought that was probably fair to record in the report. However, had it said categorically that the fatigue I experience has nothing to do with CLL.. I'd have said "See you later baby!". My previous Haemotologist had advised me that he had another patient who presented as I did, and as soon as he was treated he returned back to 'his normal' and the fatigue went. Of course, now I understand that this could never be guaranteed either.
I believe that 'your normal' is where the comparison needs to be made. What you could comfortably do previously over a sustained period of time (eg: years) vs what you can now do comfortably over a sustained period of time. With no co-morbidities, good sleep and diet, fitness and physical activity as a big priority in my life and a healthy desire to be both active and working I find it difficult to believe it is not because of the CLL.
Medical professionals understand that secondary gain can be a factor in people presenting a certain way. Secondary gain could make a person not want to keep working in a job they didn't want to be in. But, that's not you. You are just asking for support to be able to make adjustments that will help you working because you want to be, like me. Too friggen young to be put on the scrap heap! 😆
I'd look for a new specialist. One of the most important things when you have a long-term condition is that you have trust and rapport with your Drs. Research shows it improves outcomes for patients. AussieNeil has made some good suggestions about this. And here in my country, a GPs letter about the impact of your medical condition on working would be sufficient for workplace certification. So maybe try your GP?
Exactly! I'm only 52...no scrap heap happening for me. Just a little understanding of my symptoms would go along way. Instead I'm met with " nope, if you don't agree with my opinion, I have a CLL specialist in Boston you are more than welcome to confere with"... like ummmm excuse me...1. You are supposed to be the CLL specialist in the group and 2. I don't need your referral to find someone just like you who will be dismissive of my symptoms and say wow.."I can't even feel your lymph nodes because they are barely enlarged".
It's super frustrating as they make you feel like your crazy or it's all in your head.
Hello Heather, your request seems fair & it’s upsetting to me whenever someone tells me something about myself when they don’t have a clue. I know my Orthopedic who did both my Total Knee Replacements 2yrs apart only would sign for a Temporary Handicap Sticker & his rationale was that he did not want me to become an invalid since I was in my early 40’s. When I left him I didn’t even have to haggle with my new Orthropedic, he signed for my Permanent Handicap Sticker right out the gate🤷🏽♀️
I would try your GP & maybe start looking for another hemo/onc person. I fought with all my energy about this unresolved pneumonia causing my ‘Moderate Chest Restriction’ and Pulmonary denied me antibiotics & Oncology followed them. I want to stay on Zanubrutinib but once I acquired this Plerisy, it causes me chestpain. I had to get a friend to get a prescription from her doctor for me🤷🏽♀️ 1 day of antibiotics & no chestpain or pressure. I stayed in W&W for 13yrs & 8mos but been to the ER 3X in 3 months for Chestpain since starting the BTKIs. Continue to advocate for yourself but also conserve your energy as much as possible. Some of them are stuck in what they believe & you won’t be able to convince them otherwise. In my case I just think they know how badly they screwed up my case & solidarity is their best defense 🤦🏽♀️
I have my CLL Specialist Appointment in 2 weeks which is in another state about 45min away. So I will just stay with them for my expensive drugs & bloodwork. Minimizing my stress is a daily battle🙌🏾
This makes me so sad to hear. I feel like if Dr's really listened to their patients... this wouldn't be so bad. Also, alot of them are afraid of the insurance companies because they make the Dr's lives that much harder with all of the hoops they make them jump through.
Heather, I am meeting with an employment lawyer on Thursday regarding my upcoming request for accomodations. Glad to share my knowlege. I will pm you now.
Please consider seeing a top CLL specialist who will more than likely be happy to supply ADA accommodation information to your employer. Not all of us get severe fatigue, but "cancer related fatigue" is very real and exists across many cancers. Any chance you are female? Doctors often pooh-pooh and under treat women's health concerns.
My first doctor at diagnosis was not a CLL specialist, but *was* a hematologist-oncologist. Not a regular oncologist. They read up on CLL and knew about the fatigue, no problem for me getting handicap placard and whatever documents for work. I loved that person, during my first remission he retired so I had to start looking again. The next one wasn't that great, I kept on looking & now have one I am happy with. Please see at least a hem-onc, and if they dismiss your fatigue, keep looking until you find one that takes your concerns seriously. As well as will help get you an ADA accommodation. Between the travel and infection risk, you likely can get more work from home (WFH). I am reading in management blogs many employers want more people in office "just because." If your job actually can be mostly WFH set it up sooner, if you happen to get severly neutropenic when/if you finally start treatment, you will want to avoid crowded offices even more.
I have two CLL Dr's. One close to my work and home and the other (who I used as a second opinion) in NYC at Memorial Sloan Kettering. I think I'm going to be dropping the one close to home and just stick with my dr in NYC. It's two hrs away but I think that's what I'm doing.
You may want to see the local one intermittently if you think you may need monitoing like labwork during treatment. A number of us do this. Once a year to the local is all you need to stay an active patient.
Go find a new doctor, any specialist knows fatigue and Brian fog is a symptom of CLL even when you are in watch and wait and bloods are normal. Also, I don’t know where you live, but in the UK cancer is a disability and therefor is a protected characteristic at work. You don’t need doctors notes to request changes to work hours etc…
I assume you are at desk most of day. I would get up every hour and do a few exercises, or just walk and arm exercises. When I walk, sometimes it brings new life. Actually, since I have a bad knee, I use a recumbent bike in house in place of some of walk.
I am and I get up alot because with my ADHD... it's par for the course. 😆 That's why at home it works out so much better.. for everything. I'm getting up for lots of different reasons that I don't necessarily have in the office. Not to mention it is extremely isolating being the only one in an office of just about 50 people.
Heather, Could you come in 2 hours for either 4 or 5 days a week? They would probably be really happy if you got the mail daily-- four hours is much more exhausting than 2 hours, and it would be more like an outing and a daily routine than 4 long and isolating hours. It would be good to figure out the best two hours not only for you but for the office before you suggest this. Are high traffic times and commute expenses an issue for you?
I filed FMLA and took it intermittently as needed. I also requested accommodations such as attending large gatherings by phone. If you’ve worked there a year it’s something to consider. 6 years ago my CLL specialist said my fatigue was likely from something else too.
I’m with you here. I was started on V&O and stayed on it for 9 months (V) and 12 months for (O). Even now a year later I have so called normal numbers but still suffer from fatigue and sharp bone pains. The hematologist isn’t concerned as they only look at the blood levels. I will change Drs soon and would recommend you do the same.
I've been back in the office 3 days a week 4 hrs/ day for over a year. That wasn't so bad. However, then in May they requested I be in the office full days as it wasn't "working for them" the other way. For the most part I'm alone and all I do is get the mail and the rare package. I also was diagnosed work ADHD a few years ago and the fatigue from the CLL coupled with that of mental fatigue from using executive functions... or trying to at least... is too much. My husband is very supportive and says just quit because he hates to see me struggling but I do like my job. I don't think it's beyond reasonable accommodations to let me work from home. However, if I can't get my Dr to do the note...I don't think my office will just accept me saying it. I think I'll have to make them by getting the more. I have my second opinion Dr at Memorial Sloan Kettering in NYC that I've kept because I've had so many issues with the office near my hometown. (Taking forever to get an appt, taking over a week for someone to respond in the portal, feeling dismissed when I have asked for notes or whatever. ) So I think I'll be making the MSK Dr in NYC my primary Oncologist because they are on the ball about everything.. the only reason I didn't in the first place is because it's 2.5 hrs away from home. I do feel much more at ease work their care though. Appt with him tomorrow so we'll see how that goes.. with me asking for him to write a note. Fingers Crossed 🤞🤞🤞
This is a tough issue. I'd recommend adding a CLL specialist to your care team, even if they are remote and you can only see them once in a while.
I had a good local hematologist/oncologist, and he and I had a lot of discussions similar to yours. He did not completely ignore the fatigue, but since he could not isolate a clear medical cause, he was relatively dismissive of my fatigue complaints. Didn't blow them off, but didn't do a lot about them either. I don't think he would have signed off on any medical statements.
My CLL specialist, who sees 100% CLL patients, was more understanding. It's not a blank check - we discussed disability during treatment and ruled it out - but I do get help from that team in filing FMLA, ADA accommodations, etc.. in the US system. CLL specialists, I've found, are more willing to ascribe symptoms I report to the disease and not to "other causes" because they see a lot of CLL patients and "know what they don't know" regarding the linkage between symptoms and disease.
That having been said, I don't think my hematologist was an idiot, or mean. Doctors are trained to make evidence-based decisions, I get it. I have kept both on my team (hematologist is much closer to my home) and both doctors work well together.
You do have legal protection with the ADA and with FMLA in this situation. Be careful about going that route, though, particularly if you are working at a smaller firm. You can't undo it, and there's lots of ways for employers to work around those protections if they desire to do so. Plus, as my hematologist correctly advised me, "you'll be instantly marginalized".
One other experience I can share: I did not realize at the time I was working on all this how much fatigue was actually affecting me. Now, six months into treatment, I feel a fair bit better - and realize that the previous 18 months were much worse than I thought at the time. It's hard - patients definitely do overreact to these issues sometimes. But if you are trying to fight through fatigue to be productive at a job you are trying to do well, that's likely not you overreacting, it's the world underreacting. Be kind to yourself, and get the help you can from the medical system to feel like your concerns are being addressed.
Thank you so much for your thoughtful response. I keep hearing "get a CLL specialist". I contacted the well known in my area cancer care place (New York Oncology Hematology in Albany, NY) and made appt with (Dr. Chaukiyal) who I was told their CLL physician... but I don't know if they are a CLL specialist exactly.. or just someone who does CLL in the practice.. you know what I mean? It's not a big city practice so maybe they are multi focal in their specialties? Who knows. However, I do also go to Memorial Sloan Kettering in NYC and see Dr. Jai Park who I was told is one of their CLL specialist. I see him today virtually and I'm going to bring up my request for a note to work from home with him and hopefully I get a more thoughtful response than "Your fatigue isn't caused by your CLL and I'm not writing you a note for work". Fingers crossed 🤞Stay well and keep up the good fight.
Dr Park will likely a) be more sympathetic and b) have a support team that handles such matters. I honestly think some of this is just not wanting to deal with the paperwork. Sloan Kettering is going to have an army of nurse practitioners and billing specialists who deal with this stuff and the doctor just signs the form at the end.
On how to handle work, I started on this board because of similar questions. My post here has some good info in the replies that might be helpful. healthunlocked.com/cllsuppo...
Good luck with your appointment. Good news is my hematologist was right about one thing: "if I can get you into treatment, if nothing else, you'll feel better". I'm not 100% -- exercise has been about 30% of what I did pre-CLL -- but I'm feeling loads better on immunotherapy than I was pre-treatment. So there's light at the end of the tunnel.
He basically told me no also. However he said if I asked them for accommodations and they asked for a note that he'd write something about CLL patients being more susceptible to infections... that he wouldn't mention my fatigue. 🤷♀️
This makes me really angry. I am disenheartened at the research showing unless one is basically a middle aged normal weight white male with good teeth wearing a business suit, health concerns can often get dismissed. I personally would be asking the doc why they think fatigue could not be an issue in my case, and why they would refuse to mention it. If your GP hasn't yet done a thorough workup for other causes of fatigue (thyroid, anemia, etc.) get that done. Plus explore if anxiety/depression from the diagnosis affects your fatigue if you haven't yet? I personally would also be asking any specialist something like "why do you think cancer related fatigue could not be a consideration here in my case? I know it's been documented in many cancers including CLL" . Have an iPad with links, or bring hard copies, of articles about cancer related fatigue to ahow what you are aware of regarding this condition. If you aren't journaling your daily activities, perhaps start. Demonstrating how going into the office, the commute, etc. affects your ability to do things unfortunately may need to be demonstrated, if he won't simply take your word for it.
Well... if you have an accommodation in place, the work world tends to be more understanding on the fatigue front.... and if you have an ADA accommodation for immunocompromise, that tends to support a work-from-home situation. A lot of that will depend on your employer's HR processes and your line of work. If an employer wants to challenge these things, they usually can find a way to do it. But I think many will respect that process. So I'd take your oncologist up on that offer.
The main thing I've found is that CLL is not an "obvious" disease. My side effects are not visible on my face, and fatigue is of course somewhat subjective. HR usually knows that disabilities are not always visible and that there are some legal requirements around accommodating disability. Managers generally don't know that stuff.
So your work reactions will depend a lot on your employer's rigor about such matters. A good sign is if your employer's HR has paperwork you need to fill out for the doctor, vs. just relying on the doctor to write a letter.
I'd also read up a bit on the ADA (assuming you are US-based). Knowing what the law says will give you the confidence to handle the situation with calm and tactful discussion.
Thank you so much for the info. I haven't thought about some of the topics you discussed. Good idea... I'll ask my HR person who is also the Executive Assistant to the president of we have ADA accommodation paperwork for the Dr to use to fill out. Good idea. Thank you. I didn't think of going that route. I've already had the conversation with HR about "discussions with my Dr that I've been having regarding the possibility of working 100% from home" so it won't be a surprise that I'm asking.
I also go to Sloan Kettering. When I asked my doctor last fall about taking a 1-year sabbatical from working at a school since I was starting treatment, he was extremely supportive and wrote the necessary letter. Part of it stated that he recommended a leave of absence, and that since I am immunosuppressed, extensive leave from my work duties was conducive to my health during this challenging and uncertain time. Unfortunately he left Sloan Kettering. My new doctor would not write the necessary recommendation letter that I needed to submit half way through the school year saying that CLL is not a disability. That left me in quite a dilemma. I asked her to simply write a letter stating I was under her care for CLL and receiving treatment. She would not even include information about a compromised immune system.
Why do these providers not advocate for their patients as much anymore? Are they so worried about "putting their license" on the line (which my dr whom I like actually said to me when I was asking him) that they don't want to do the steps necessary. Or is it that there is so much that is asked of them if they are challenged...pushed with the bureaucracy of paperwork... that they just don't want to do it. With small offices, I can see that as being the issue... but Memorial Sloan Kettering is a huge cancer only facility.. you'd think that they would have staff that do just that kind of thing for them. I can't be the only one asking for this... can I? According to the people here... I'm not... but Dr Park said that I'm "the only patient of my disease load in his 15 yrs of practice...that has had this much fatigue. I find that....utterly unbelievable. 🥺😒👎. I've heard more than that here each day..I find it so hard to believe that I'm "the only one".... like c'mon.
IME really huge insitutions can be almost "government institution like" regarding following standard protocols. Depending on the culture, practitioners may have very little ability to swerve from doing "the usual". And even within a flexible organization, practices differ. FWIW I tried 3 different docs within one moderately large organization before finding a specialist I meshed with. And different campus' of a single organization can differ in patient experience. It's a pain to keep searching, especially as one had to travel further and further in search of a great fit.
I do think medicine and what "used to be" is changing, as is virtually everything, post early pandemic. The things I see people do nowadays would have caused firing/not being hired back in the 1980's. But they need bodies to do the work. So, so many died from Covid. So we now have to take more upon ourselves IMO.
1000%. Everything has changed post Covid. Processes, people and they way people think. Some good... most not good. I've worked in Healthcare for 20+ years and it's crazy to me that primary care Dr's don't do even half of what we did... even 5 yrs ago. It's crazy.
Hi, had fatigue with job, so got FMLA intermittent leave. Oncologist wrote for 3 days off a month to be taken at my discretion related to CLL fatigue, infection risk.
I don't really know, but probably stage 0 to stage 1. I was prone to having frequent infections, uti and resp, then too that affected my ability to work.
One thing that really helped me was adding a stimulant. I use Adderall and it allows me to work full time, where without it, I might be able to work 4-6 hours a day. You also mentioned ADHD, so it might be a win-win for you. Consider asking your GP if this might be a consideration for you. Your issue with your oncologist is a whole other can of worms.
Of note thought - the medication is expensive and not all plans cover it. And some pharmacists treat me like an addict.
I'm already on 40mg Vyvanse for my ADHD and it does help to keep me focused. My Oncologist still says each appt that the "nature of her symptoms can be contributed by CLL, however unlikely to be the only driver of symptoms given stable counts since
last visit and the degree of involvement based on CT imaging. Patient was encouraged to follow up with primary regarding her current symptoms". (That was taken directly from my report) Maybe I'm just a big baby... maybe it is just me and I need to suck it up. Everytime I talk to either of my Oncologists this is their view on it. I'm feeling very defeated and dismissed I guess. Glad that technically my CLL is stable but defeated because why do I feel like such crap. Trying to explain it to my husband that I feel like the day you are starting up get a cold or flu... that run down, achy, glands sore in your neck kind of feeling... everyday. Very discouraging.
It sounds like the onc team is pushing off any fatigue related problems onto your GP. I lknow exactly what you are talking about, I can *make myself* physically do things but then might spend most of the next day in bed. You may need to take up the "cancer related fatigue" discussion with your GP.
It's crazy how much "you look so good though" looks I get though. I shouldn't have to explain why I feel like crap... but that's the world we live in I guess. I'm guilty of it too. Looking at a person parked in a handicap parking spot with disdain and realizing they do have a placard. 🤦♀️.
Nope. You aren't a big lazy baby and you don't need to suck it up. You're doing your best and still working-- and just need an accommodation to continue performing your job. You need to find a hematologist who specializes in CLL and understands your condition better. How did your consult with Dr. Park go?
Living in the northeast of the US, I am in close proximity to some of the best cancer Dr's in the country supposely, So why is it that I still feel dismissed 😒? Is it because I'm not as "bad off" as some cancer patients? Do some of these top Dr's get jaded and if your numbers aren't saying you're dead... don't take you seriously?
Terrible. He told me the same thing. After I pushed... he said ask for the accommodations... and if they ask for the note, he'll write that it is better for a patient with CLL are at higher risk of infections. That's it. 🤦♀️🥺
Thanks so much. Have an appt next week with my primary care Dr who I've had for over 20 yrs. Maybe I'll get somewhere with her as she knows me best of all my Drs. Fingers crossed and I'll update everyone.
All I can think to recommend is to ensure you have a man (husband, friend, brother) at your appointment to give your story credibility. As women, there are certain dynamics at play when we access healthcare, whether we like it or not. Subjective, constitutional symptoms are difficult to have supported by the medical establishment. Stress that you aren't malingering--you are doing everything you can do to continue work. Keep trying.
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