I was diagnosed with Essential thrombocythemia (ET) in April after many years of vague, yet annoying health symptoms. I’m Jak-2 positive and my platelets are around the 600 mark (not terribly high, but high enough)
I have been aspirin and have also had 2 Besremi injections so far.
My issue at the moment is coping with work. I am a nurse, nearly 63, and work 4 days a week. The tiredness is pretty awful, I feel lightheaded and I have suffered nausea and diarrhoea since starting my treatment. My employer is very understanding but I don’t feel I can keep taking odd days off sick. Is this something that others have had to deal with? Any advice is gratefully received
6 Likes
Hi @HelRol
Sorry you are feeling unwell
I work in community mental health and have a different diagnosis (Chronic lymphocytic leukaemia (CLL)) but feel your frustration and struggle.I too work x 4 days as the fatigue is just unbearable sometimes. I have found I need to take my day off mid week as I just can’t work 4 days consecutively . This has helped me not have to take too many odd days off as I get the break and day to rest I need
I appreciate this isn’t always suitable for everyone but my employer has been great at reasonable adjustments to try and help ( NHS)
I hope you find something workable for you, let me know how you get on
Take care
4 Likes
Popping along to say hello. Whilst I’m not the patient (my husband is), we found that being transparent and honest (as much as possible) with his employer really helped.
Are you part of a Union or is there a team within work that might be able to help you navigate some of these questions? I know that there are a lot of resources for supporting people at work and financially to understand their rights, options for flexible working and reasonable accommodations. Hopefully one of the blood cancer team might be able to sign post this if you need it.
Worth also mentioning that we found Maggies, the charity particularly helpful and patient at talking through some of the considerations and support available.
6 Likes
Hello @HelRol
Sorry to read that you’re struggling with work. I can imagine four days is tiring enough then adding in Essential thrombocythemia (ET) and treatment can increase your fatigue to the next level.
I wondered if you had seen our Money and Work website pages. There is some helpful information on Reasonable Adjustments as @DottieB and @Toadmum have suggested: Work pages you may find it helpful to read through, so you know your work rights if you are going to approach HR where you work or just to know other possible considerations.
Interestingly there is another thread where a few people mention Besremi causing increased fatigue, (I’ve seen you have commented there) so I am wondering if this is a newly known side effect of this treatment, rather than just the Essential thrombocythemia (ET) and working.
In case you are not aware, (as you are quite recently diagnosed) Besremi has only started to be used in the UK for the last 10 months or so. It’s being temporarily used to replace a drug that has a world-wide shortage- Pegasus (interferon), and so when there are stocks of Pegasus again there will likely be the option to swap back.
Do mention your fatigue levels to your Haematologist, let them know it’s affecting your work too. It might be helpful to fill in an Myeloproliferative neoplasms (MPN)10 chart to take along, if you don’t already do this. It is a good tool for monitoring your symptoms and sharing with your team: MPN10 Tracker so they can see what is the most troublesome and the level at it’s worst for you.
Hopefully others will also make suggestions for your work-life balance too.
Please keep us posted on how you’re getting on.
Take care.
5 Likes
Hi @HelRol Sorry to hear about your challenges with work. I am 71 and was diagnosed with Essential thrombocythemia ('ET') about 6 months ago, I too am JAK-2 positive. I take Hydroxyurea which has lowered the platelets, but has to be adjusted so that they are not too low. I too have struggled with fatigue. Adjustments to my Hydroxyurea do not seem to affect my fatigue.
I am a college professor who has multiple duties including teaching classes, doing research, supervising students, and working on various committees. I also have about an hour commute each way on days that I go in.
I have been working at finding ways to shorten my days in the office and to do more online work. For some duties, like serving on committees or participating in meetings, that works well. I have been able to negotiate to teach an in person class that will meet for two hours at a time instead of the usual 3.5 hours per session but for more weeks over the summer. I have also been turning down discretionary activities like doing journal reviewing, and doing paid consulting that requires travel. I have not told my department chair the details of my condition, just that I have a blood disorder that causes fatigue, and that has been enough for her. It helps that I have worked in this department for 30 years and have a track record of hard work and doing all the extras.
If your nursing duties are mainly clinical, requiring seeing patients and having a very full schedule, that could be challenging to alter. I wonder if you might be able to shift some of your duties to activities that are less physically strenuous, like handling phone consultations?
I know that I am fortunate that I have more flexibility in what I do at work than many do. I hope you can find ways that your supervisor can work with you to continue to make contributions based on your skills and experience, but requiring less physical effort.
Be well, Bill
3 Likes
Hello there @ProfessorJAK, welcome to the forum from one survivor of Myeloproliferative neoplasms ('MPN') to another. I’m really glad you found the forum as you will no doubt see that you’ve found many others here who live with Essential thrombocythemia ('ET') and other Myeloproliferative neoplasms ('MPN').
I am really sorry you were diagnosed though, it sounds like the Essential thrombocythemia ('ET') might be impacting energy levels which is unfortunately pretty common from my non-medical understanding. I’ll share here the great Blood Cancer UK information about Essential thrombocythemia ('ET') in case you haven’t read it: Essential thrombocythaemia | Blood Cancer UK
In 2023 I was diagnosed with a JAK2 gene mutation and Polycythaemia vera ('PV') which is closely related to Essential thrombocythemia ('ET') and often has similar symptoms and treatments. Like you I take hydroxyurea and it also caused me great fatigue. It was actually pretty disabling but thankfully that faded after a few months, perhaps it will for you too? Here’s some BCUK information about ways to manage fatigue in case it’s of interest: Fatigue | Blood Cancer UK
It sounds like you’ve got a busy life and I wonder if the fatigue you experience might be related to that on top of the Essential thrombocythemia ('ET') and its treatment? Perhaps there are further ways you can minimise how much energy you use at work—with Essential thrombocythemia ('ET') being considered a blood cancer, there are legal allowances for supporting us at work. I wonder if you’d like to speak to the specialist support nurses at Blood Cancer UK about ways to decrease the fatigue whilst maintaining your work/life balance? They can be called again from Monday at 10 am on 0808 2080 888 and really know their stuff.
Hope that helps a little @ProfessorJAK, I’m glad you found us! Do please keep us posted about how you get on.
Hi @Duncan, thanks for welcoming me to the community and for your comments. Yes, I am a pretty busy person. Besides these work duties, I am married and have two adult children and a granddaughter who live locally. I spend a lot of time with them and help drive my granddaughter back and forth to her school and activities as I can.
I am in the US (Florida) and so I don’t likely have access to some of the resources and benefits you have in the UK. I joined here because this seems like an active board of people trying to share information and assistance. I think I will be able to manage things informally rather than use legal approaches or use the disability system. I am not really disabled but I do need to find ways to limit my activities, and I think my colleagues and department chair are glad to work with me to do so.
For me the biggest thing is learning to say no. I get a lot of very appealing invitations that add to my workload. Last Fall I took trips to a US university to review one of their PhD programs, and to South America to review a research center funded by their government. I was paid nice consulting fees to do these activities, and enjoyed them, but the travel and work on top of my usual courses etc. (which continued) wore me down a bit. So I have to learn to say no to things that may be very attractive but not smart for me to do. I usually travel to two professional conferences a year, one in August and one in November. I am planning on only going to one this year.
I look forward to being a part of this wonderful group and learning from others, and contributing as I can.
Bill
1 Like
Hi there @ProfessorJAK
It seems like the UK, a cancer diagnosis is a disability in Florida
You are entitled to reasonable accommodation at work too
3 Likes
Oh these are so interesting @2DB, thank you for looking this up. I wonder if there’s equivalent information for California?! Each state has its own laws and medical standards, a bit like around the UK nations, so I wouldn’t be surprised if employment and health rights vary state to state 
I’m very glad you’re already finding the forum helpful @ProfessorJAK, it really is great. Funnily enough, I am also in the US but in Northern California and perhaps like me you’ve already been directed to Blood Cancer United (formerly known as Leukemia & Lymphoma Society): https://bloodcancerunited.org/
You’ll find they have a similar forum (“community” in Blood Cancer United parlance) and links to information about Essential thrombocythemia ('ET'), Myeloproliferative neoplasms ('MPN'), and conferences held around the US. I attended one in San Francisco which was great for meeting others living with Myeloproliferative neoplasms ('MPN') like ours and learning more in person from experts in lectures—I wonder how it is to be a professor taking in a lecture?!
Blood Cancer United also has support for employment rights and perhaps even specific tips for Floridians, you’ll have to navigate to their resources page and check the various menus.
But of course we have this amazing forum here which is so friendly. I’m glad you found us! I’m sure by looking around you’ll read of many others who have shared tips for managing fatigue. Use the search box at the top or Related Topics below to find more posts about, for example, Essential thrombocythemia ('ET') or fatigue.
Looking forward to hearing more of how you get on @ProfessorJAK.
2 Likes
Hi, I think that in my circumstance, I prefer NOT to file a formal request for disability, and instead to work informally with my supervisor to get her support for minor accommodations like taking meetings online when possible, not coming in for long days, etc. This allows me to maintain my privacy and to note be in a legalistic system for determining accommodations. Of course if necessary I would certainly escalate to using such legal means for assuring accommodations.
1 Like
Hello all. I was surprised to receive a message several days ago that this post was flagged by someone in the community and made unavailable for others to read. I just received a message this morning that a staff member reviewed this and restored my post. I find it very surprising and disappointing that this post, which I can’t see anything objectionable about, was flagged by someone in the community. I look forward to engaging with everyone and having great communication. Bill
2 Likes
It sounds like you have a great relationship with your supervisor long may that continue 
3 Likes
Sorry to read that your post was flagged @ProfessorJAK, it may have just happened automatically as this site is pretty advanced, rather than by the community. We forum members can flag posts too though, for example if they appear to be written by bots, which I note is quite common 
Do androids dream of electric blood?!
Glad you’re staying put, like you say we can always try to communicate, and I’d add even through differences.
1 Like
Thanks, I know that I am very fortunate to not have to take action to make sure my rights are legally protected. As a tenured professor, one who built my current department over a 30 year period, and a member of a strong faculty union, I have a lot of protections that many do not have.
Looking forward to a long stay and learning much from my fellow blood cancer friends.
2 Likes
Academic departments are very different than businesses. We are a small department and I hired my current “supervisor”. I put that in quotes because a department chair in an academic department is really not at all like a boss. They can’t tell me when I have to be in the office, I largely get to choose what courses I teach, I have utter freedom concerning what topics I do research on, and I can also travel or work at home pretty much as I choose. That said, there is a lot of accountability, students complete evaluations of my teaching after each course, I am expected to bring in research grants and publish academic papers, and there are plenty of expectations. Since I came from a family of blue collar workers and am the first in my family to have attended college, I know how privileged I am. If I can keep my Essential thrombocythemia ('ET') and other chronic conditions under control, I can continue to enjoy both my job and my life.
3 Likes
I mentioned in previous posts that I preferred NOT to go down a path of formally declaring a disability and having a bureaucratic process requiring disability compensations. That has turned out to work very well for me. I have told my colleagues, in a general way, that I have a blood disorder that causes fatigue. I have not pursued a legal process related to disability within my university. But my colleagues have been very helpful and sympathetic, they have chosen to give me teaching assignments that reduce the length of my classes and that avoid me having to commute during rush hours. I am grateful that I have the kind of job that allows for me to get help informally from colleagues who are willing to make things easier for me, rather than having to pursue mandates related to official designation of a disability. I know that many may need to pursue formal processes. I know that I am very fortunate.
4 Likes
Hi @ProfessorJAK, it’s lovely to hear that the informal approach has worked out so well for you and that your colleagues have been so willing to find ways to make things easier without having to go through a formal process. Long may it continue!
For anyone in the UK reading this thread and thinking about having a similar conversation with their employer, as well as the many wonderful resources linked in earlier replies we also have a page on working with blood cancer that covers reasonable adjustments in detail and includes a template email to help you tell your employer about your diagnosis - useful if you’re not sure how to start that conversation. We also have an article written with Acas specifically about blood cancer and your employment rights if you want to understand where you stand legally.
4 Likes