I was diagnosed with B cell CLL in January 2021 during a six-week hospitalization after passing out at the Post Office. I have been in treatment & working remotely since that time by submitting an accommodation request form every six months or so to HR. The first time I had my CLL hematologist fill out the accommodation form for medical providers a couple of years ago he recommended that due to being immunocompromised it was best that I avoid crowds. HR said that was not enough information, so I filed out the employee accommodation form with supporting documentation from the CLL Society and other reputable agencies. In January 2025 my job now wants me to return to the office 3 days a week and refused my employee application to continue working remote. This time the hematologist wrote on the medical provider accommodation form that I had no restrictions and did not indicate that CLL is permanent despite the fact that my body produces no antibodies on the spike test after COVID vaccinations. This is so baffling as he told me on my last visit in November 2024 that he was happy to announce he could keep me alive for the next 10 years with all the new medications available making me feel like I have an expiration date. I never submitted his recommendation to HR. It took 3 weeks for me to reach the hematologist nurse who was surprised when I told her what the hematologist wrote on the medical provider accommodation request form. I still have not received anything from the hematologist stating that I am immunosuppressed. I reached out to Triage Cancer who suggested I contact another physician and reply to HR requesting accommodations under the American Disabilities Act (ADA) with proof of my CLL status. HR has not replied to me yet. Prior to COVID I sat in a cubicle in a high traffic aisle with four other people, one co-worker is facing me with only a fabric divider wall & two desks between us. There are about 200+ employees on the same floor with only a bank of 3 elevators so if you don't want to be late you have to get on a crowded elevator to get upstairs on time. There are only two restrooms & two small luncheonette areas. The ladies’ room has about 8 stalls, and it is only cleaned at night. I never really sat in the lunch area much, but I would still have to use the microwave or toaster oven, fridge, sink & water dispenser like everyone else plus my office is very cold which sets my asthma off everyday. If I must go back to office, how do I best protect myself? I bought a load of surgical N95 masks, two big boxes of nitrile gloves to wear in the lunch area & restroom plus a bunch of thermos containers if I have time to heat up my food before leaving for work in the morning. Is there anything else that I could be missing? I have Lysol disenfectant, peroxide and alcohol to wipe down my chair and desk every morning. I know I sound neurotic, but I got very sick after one optometrist visit at Costco last year even though I was very careful. When I went to the hematologist, he never tested me for COVID or provided a prescription. He just walked out of the exam room & left me with the nurse. I coughed for 3 months straight. Any suggestions on returning to the office safely without the support of my hematologist or HR? I have been trying to find a new CLL hematologist but have not found one to accept my case yet.
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Mango357
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Hello Mango, and this is just me as a layperson with cll, but I think the writing on the wall might be that your employer is highly unlikely to let you work remotely. There are laws in most states to penalize employers for acting arbitrarily. Unfortunately, your doctor has written a note giving you no restrictions. It would be most difficult to prove your employer was unreasonable in relying on your doctor’s report to require you return to the office.
In my opinion, and this is one area I know a bit about, I kind of doubt your employer (or employer insurer) will change it’s decision even if you find a doctor to contradict the doctor who returned you to work without restrictions. Unless you have some sort of legal skills and other resources, handling this on your own will probably not budge them. You may consider hiring counsel experienced in hippa and labor law.
How employment cases like this are handled state to state can vary. Some states may have administrative judges that adjudicate cases, some may require arbitration and other states may allowfor a suit in civil court. Your atty will know your remedy. If you cant find a doctor, some attys will get a second opinion doctor for you. I mean, how hard could it be to find a doctor to say that immunocompromised people need work accommodations?
In terms of working it out, your employer can have all the leverage. Once a suit is filed or a hearing is set, I’m betting on the leukemia patient every day.
You cant cross examine the report of your doctor, but your attorney can certainly cross examine him. Your original doctor will have to concede that anyone who has had cll as long as you have and is treating for cll, has to have some degree of being immunocompromised that can create an added risk of a serious infection.
You or your atty should be able to hire an expert to contradict your doctor. I do not think one is going out on a limb to say someone with cll is probably immunocompromised and should avoid crowds and close quarter work.
If your first doctor and your second doctor disagree, it becomes an issue of fact for a judge, jury or arbitration panel. There is no sure bet for either side on an issue like this, but give me the guy with leukemia over the employer every time. It’s not like you are faking a back injury. You have leukemia. If it’s remotely a close call, I think most judges and juries will not approve an employer dicking around someone with leukemia, excuse my french. Mad juries tend to give larger verdicts. Jacking around an employee who has leukemia has great potential to make jurors mad who may reflect that inn their verdict and verdict amount.
I cant really give legal advice. My experience in similar matters at this stage tells me it will be very hard for you alone to change their position. In that case, and if you feel unsafe at work, consider finding a labor lawyer and seek advice. Remedies can vary from state to state.
One thing that probably will not vary is the huge sympathy factor the employer will have to overcome. Most people do not understand leukemia on the level we who have leukemia do, but they know it’s a serious cancer that evokes memories of frail people in masks and 5 year olds who have lost hair in treatment. I have no basis or data to support my opinion on who wins such a case. but I think the employer loses to the leukemia patient in a case 90% of the time. The employer/insurers certainly know how hard overcoming the sympathy factor will be for them, but that strategy works for them because they discourage so many from making claims.
If the facts are as you describe, settlement could become a real possibility if sue them or convince them you are hiring an atty. . Employers and insurers are not stupid, they understand jacking around an employee with leukemia is a bad look for them.
I don’t know all the facts of your case and cant give an opinion, other than to suggest that you find a good atty in your area and get a consult on your remedies. It might well take filing suit to get a settlement offer.
I thought that I replied to you but it looks like I didn't click the second reply button. I sincerely hope things don't go that far but I will consider it because I work for central administration and they cover all of New York City including Albany for my institution. My job has 40,000 to 60,000 active employees. I would hate to think that other co-workers are having the same experience. Unfortunately diversity policy includes accommodations for employees with disabilities therefore with a shift in the national thought process it seems employees with CLL may become collateral damage. I need to hold on to my $500+ healthcare insurance monthly premiums because I cannot afford the $15,000 a month presecription. My plan was to work another 3 - 5 years so that I would be able to apply for Social Security early if needed & Medicare. Treatment is successful so I doubt I would recieve disability. I'm not confident in the American Disabilities Act (ADA) or the Equal Employment Opportunity Commission (EEOC) strength anymore but I have brought them to HR's attention. eeoc.gov/laws/guidance/canc... and askjan.org/media/Cancer.html . People leave my job suddenly all the time. I started working on upskilling towards more remote friendly jobs.
I’m sorry to learn of your difficulties. Cajunjeff has done a good job of laying out legal alternatives in the US so I don’t have anything to add there. However, one thought I have is are you able to access IVIG treatments to bolster/supplement your immune system? This doesn’t solve your in office requirement but perhaps it could strengthen your immune system so you’d be safer in an in office work environment.
Thank you so much. No I did not consider IVIG but I will investigate further. My hematologist never discussed how to return to normal life with CLL other than to lose weight. I can only assume that maybe he thinks my CBC panel is strong enough to handle actively being in-person. I have always been very careful avoiding crowds, wearing masks, changing clothes as soon as I get home in addition to washing hands & my face. The only help I got normalizing was from the pharmacist who told me to always wear a mask in public, standards from the CLL Society and forums like this with administrators.
The other possible option is SCIG (subcutaneous immunoglobulin) injections that you administer yourself. The injections are done with fine needles and are the same as IVIG (inter venous immunoglobulin) which are done in an infusion center. They are the same treatment but administered differently. SCIG is administered weekly at home and as a result the protection is more constant as these infused immunoglobulins only last 30 days after infusion. IVIG is typically a monthly infusion. Whether you can get SCIG depends upon your health insurance policy.
The qualification for either IG treatment is low immunoglobulin levels AND frequent infections. It sounds like you may qualify? It’s definitely a worthwhile discussion to have with your specialist.
Can you get all of your laboratory result records together and make an appointment with an immunology or infectious disease specialist in you area? If you have hypogammaglobulinemia or other immune disorder diagnosed then that would be what the specialist should write in your form for the Equal Employment Opportunity office connected to your workplace.
I have heard the topic of adding an immunology or infectious disease specialist to a CLL care team before but I couldn't figure out how to do that. This is an excellent idea because there are other things I would like to do outside of the job. My hematologist went to Japan & told me that Leukemia is very low there. pubmed.ncbi.nlm.nih.gov/384... . If I could figure out how to travel safely I would like to do so to find out what the Japanese are doing that I am not. I have stopped all travel since COVID & being diagnosted with CLL. That is a part of my life I would like to get back. I miss doing global volunteer work. Maybe there is a silver lining to all of this. At the very least an immunologist would be an additional resource to CLL management. Thank you for the suggestion.
Thank you BigfootT. My case is such an anomaly. I am not a white elderly man and my cousin had a son diagnosed with Leukemia at age 5 who lived until his late 20's plus I have a very rare blood type. When I asked the hematologist about this he said genetics had nothing to do with it. I found that dubious because I born & raised in NY & my cousin's son was born & raised in England so how could it just be environmental?
Your situation is unfortunately rather common. You're are being asked to work in an environment that is more unsafe for you (as an immunocompromised individual) than your typical coworker. Neither employers nor doctors can put a precise probability on how likely lon- term CLLers (typically bearing both hypogammaglobulinemia and exhausted T-cells) will get sick because of exposure to pathogens in the work place, so they minimize potential danger and ask us to work.
My employer has permitted some accommodations at my teaching job including timetabling my classes into a well ventilated room (large windows) (CO2<600ppm) , allowing me to wear a mask, and providing a standalone HEPA filter. We've agreed I'm not to go to other stuffy rooms for meetings, however they constantly "forget" and I have to decide between doing my job and risking my safety. Moreover, class sizes are increasing and school policy is that students/teachers are welcome and encouraged to come to school ehen suffering from minor infectious disease symptoms (mild cough, running nose, medically controlled fever, aches/pains...).
My working analogy is that this immunocompromised employee being asked to go into a poorly ventilated room with 25 different students at one time is equivalent to asking me to smoke a couple packs of cigarettes a day as a required part of my job. I might get a pathogen/cancer from my workplace environment, but employers can reasonably argue I also might not. Who determines the acceptable risk? Indeed, many do choose to smoke themselves, but I don't know of any jobs requiring someone to smoke.
I believe I should be able to work safely, but I'm 3 years from retirement in a country where I don't speak the local language required for employment, not to mention my skillset wouldn't be amenable to getting a comparable income elsewhere.
So, we can ask our employers for a safer workplace/remote work, and if that fails, try forcing employers to take action using legal channels based on our doctors best advice.
Thank you for sharing. I work in higher education administration which provides more holidays off than a private job which is very helpful when I'm tired. I can retire now but my pension is not enough. I hope to work another 3 - 5 years when I can apply early for Social Security to supplement my pension and for Medicare to cover medical bills. I'm holding on to my job because my union covers prescriptions with a nominal co-pay. Medicare only pays 75% which would leave me with $3750 + co-pay to pay every month. My plan is to pivot into a truly remote job where I don't have share medical information to get permission to work from home, especially with elderly parents to care for.
My CLL never helped me at work even though my My health situation was bad enough to get SSD in 6 months
My wife was fired while undergoing radiation/chemo while working remotely the second her FMLA was used up
Sad thing was I worked for a huge company that advertised it self as disability friendly and nothing could be further from the truth but apparently the protections we think we have our and illusion
That is my fear especially close to retirement. My very best to you & your wife. I hope she is able to obtain a more flexible job that will cover her medical expenses.
(1) How are your numbers? You provided a lot of qualitative information but no quantitative. (2) Are you close to or in remission?
If your numbers are good and you're close to OR in remission, why not just live your life?
Like you, I obsessed about being immunocompromised since I was hospitalized back in 2022. I survived then thrived on Venetoclax. I'm now taking Brukinsa. When I saw my New York City-based hematologist in December my numbers were VERY good.
So, I asked him, straight up, what do I do now?
His answer was straight forward and to the point - "It's time to live your life w/o worrying about CLL."
I took his advice. That's what I'm doing. I'm still old with a host of other non-CLL issues but, I'm no longer afraid to live my life.
Finally, and probably most importantly, when I'm around people, if they are sick, I simply avoid them.
Excellent comments. Like you, I obsessed over my immune situation in 2021 as I was undergoing O+V treatment at the height of Covid. I have been in remission for 2-1/2 years and simply follow a common sense lifestyle now days. I avoid crowds, wash my hands frequently, and carry a small pocket-bottle of hand sanitizer with me. So far, so good...
Hi DanBro1 I do the same. When I go out it's on a rainy day when others stay in or in the middle of the week or in the morning after rush hour. I actually added essential oil to my hand sanitizer to give it a boost. I wear N95 masks & nitrile gloves if it's a place that may not be as sanitary as I would like. The only time I got real sick even being careful was Costco where I didn't wear nitrile gloves or wipe the bar handle down. Never repeated that mistake again.
Hi. My numbers are exceptional because I work very hard at taking care of my CLL and I do have other neurological growths which are not cancerous yet. I feel I'm living my life. I work full-time, I attend religious functions twice a week on Zoom, I do volunteer work, I interact with my family & friends around the world. I'm upskilling so put myself in a more flexible situation where I can work from home. I don't want to have to ask for sick time for medical appointments or annual leave to take care of elderly parents. So far I only got sick once since being diagnosed with CLL when I went to Costco for eyeglasses. I coughed for 3 months & my hematologist never tested me for COVID or provided meds as promised ergot my conservative demeanor. In addition my siblings just buried my stepmother in January after her bout with COVID plus family came home with the flu from the memorial service. My concerns are not baseless.
Happily someone recommended Dr Richard R Furman on this forum. His bio says "Dr. Furman is Director of the CLL Research Center at Weill Cornell Medicine and a member of the Lymphoma/Myeloma Service in the Division of Hematology/Oncology. His area of focus is on the development of non-chemotherapeutic approaches to treating CLL, and has played an integral part in the development of ibrutinib and idelalisib." I'm going to check him out. Patients seem to love him. They say he is very knowledgeable, does a complete check-up, discusses nutrition and makes sure they are aware of other cancer screenings to catch secondary cancers ASAP.
yay - good for you! You will definitely see a difference in your treatment no matter what areas there maybe in. My hubby's team gives us so much support but most importantly positivity and we believe nothing's impossible. Please provide us an update if you do. Good luck!
I am working from home under ADA and FMLA. Our HR takes this very seriously… (I think legally, they are required to). My doctor fills out the forms every year. It is really unfortunate that your doctor filled it out the way he did.
Hi NaturalWaze. I actually sent HR the ADA guidelines for employees with cancer along with a summary of my clinical notes from my last visit to prove I'm in treatment but nobody replied. The hematology nurse was mortified when I told her the hematologist put down no restrictions without saying I am immunocompromised or that I have a permanent condition. I would have been stuck in a cubicle with 4 other people in a high traffic aisle without any help from HR. The nurse finally reversed the recommendation to HR on Friday after 5 weeks saying that I'm immunocompromised. This way if the job demands in-person attendence I can at least ask for my own office & not worry about being written up for wearing a mask all day.
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