Newly diagnosed with cll

[Mpupkis]

I'm 36 and just recently been diagnosed with cll. I have read info on the condition so have a positive outlook knowing people can have it for years and not need treatment. What I'm struggling with is the fatigue. More specifically how I go about speaking to my boss about reducing my hours, as I have a very physical job which causes me the be very drained every day. It's got to the point I can't go to the gym, struggle to make dinners and care for my partner who is in a wheelchair. Marc

[Newdawn Administrator]

Welcome Marc and sorry to hear about your diagnosis at such a young age.

Because occupational rights differ, can you advise which country you’re from please. Your profile doesn’t say.

Newdawn

[Mpupkis in reply to Newdawn]

Sorry will change that. I am from Scotland

[Newdawn Administrator in reply to Mpupkis]

Thanks Marc.

With a cancer diagnosis you automatically have protection as a disabled person regardless of whether you have symptoms or are receiving treatment. This is enshrined in the Equality Act 2010. You’ll want to remain on good terms with your employer but you’re entitled to ask for ‘reasonable adjustments’ to be made to accommodate your health needs. This article from Blood Cancer U.K. explains brilliantly and is worth a read;

bloodcancer.org.uk/news/blo...

Best wishes with finding a way to meet both your and your partner’s needs and maintain your employment. As Len says, explore the reasons for your fatigue with your doctor. Sometimes with CLL the reasons elude both us and our medics and it can be very hard going. That’s why the more obvious and treatable reasons need to be eliminated first.

Regards and please feel free to ask any questions you need answering.

Newdawn

[lankisterguy Volunteer]

Hi Mpupkis / Marc,

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I hope some of our UK members will chime in with advice on your employment rights & notification protocols.

However I encourage you to see your doctor / medical team for a thorough work up for diagnosing your fatigue. Some of us had common causes like low iron or D3 around the time we were diagnosed, and correcting some of those is very easy. But some doctors resist expending the effort to properly diagnose fatigue since it has many possible causes and can be frustrating for them and you.

The fatigue from CLL feels different and usually appears later in our conditions, closer to when we need treatment. So don't automatically assume that yours is from CLL.

Here is a link to the 1672 past postings we had here that mention fatigue. The first few may provide some good ideas for you

healthunlocked.com/cllsuppo...

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Len

[Mpupkis in reply to lankisterguy]

Thank you

[Vlaminck in reply to lankisterguy]

There is also epstein barr which has almost same symptoms except DEVASTATING fatigue (it, too, is involved with your Bcells). I'd ask for a test just in case, as that could explain it plus, if it is ebv, you will know that fatigue will not continue forever.

[skipro in reply to lankisterguy]

Yes, I agree with Len.

There are many correctible sources of fatigue such as thyroid disease, low testosterone, sleep disorders like sleep apnea, EBV, and so forth.

May God bless you on this journey and lots of luck.

Skipro

PS Treatments are soooooo much better than even 5 years ago when I had my fist go.

[lankisterguy Volunteer]

Sorry I forgot to include the link until just now: healthunlocked.com/cllsuppo...

[G-F-T]

Hi Marc so sorry to hear you have been diagnosed and at such a young age. I was diagnosed 15 years ago at 55 and luckily have been on w and w ever since. I too was exhausted, even after a good nights sleep I would come down sit in a chair and just wonder why. I was recommended to look into an Acid Alkaline diet. To discover if I was retaining too much acid I needed to check my ph (2 hours after eating) when I went to the loo. I discovered my body wasn’t expelling acids as it should and this contributed to my tiredness. I bought a book by Christopher Vasey The Acid Alkaline diet, and it helped me hugely. So now I eat a normal diet just being watchful of too many acidic foods, just finding the right balance. I am able to teach Pilates, play tennis 3 times a week and badminton once, plus enjoy walking my dog. I’m not saying I never get tired I do, but I am able to lead an active life. Your ph maybe normal so in which case this would be of no benefit, I’d say worth taking a look though. Best of luck.

[SofiaDeo in reply to G-F-T]

Alkaline diets generally recommend we stop ingesting processed foods/sugars, so that alone will often cause some improvement in well-being. And further tailoring it like you did, to find whether certain foods aggravate symptoms, is about the absolutely optimum way to eat IMO!

[esn1967]

Welcome Marc, sorry to hear about your diagnosis. Last week, after consulting with an employment lawyer, I filed for workplace accomodations for the symptom of fatigue from CLL. I asked for a max on work hours as I'm on salary and have a new young boss who thinks I'm not working unless I'm running around and looking busy. I asked to have my hours maxed at 52 per week, and a per day max of 10 hours because 2-3 times per year I end up working 60+ and I cannot do that anymore. I also asked to attend staff meetings virtualy when there is covid on campus and for all faculty and staff to wear N94 or Kn95 masks when in my office, to be provided by the college. I started the process by googling 'accomodations for CLL' . I have not heard back yet from the employer, but both my lawyer and doctor who filled out the accomodation request agreed that my requests were extremly reasonable and thought that the workplace should and would grant them.

Best Wishes,

Emily

[CycleWonder]

I would second the recommendations to see if there are other possible issues contributing to your fatigue. Some of us have been able to feel much less tired by taking care of other issues, ranging from physical therapy to changes in diet.

Please keep us posted as to how you are doing.