Newly Diagnosed CLL plus CTCL

I celebrated my 60th birthday last May by being diagnosed with CTCL (cutaneous T-cell lymphoma) and CLL (Stage 0, all genetic markers in my favor). Initially I had a surprising sense of relief, as I swim for exercise and was getting frustrated with my performance. A year an a half before my diagnosis I was swimming 8000 yds each week at a pace of about 2 min/100 yds. Not exactly Olympic pace, but I was slowly getting faster. However, for about a year before my diagnoses I had been struggling to swim even 5000 yds/wk, and my pace had slowed to about 2:15/100 yds. The biggest frustration was that my swims were now leaving me wiped out not for an hour or so as expected, but the rest of the day and for the next day as well. I now walk more for exercise and swim for only 500-1000 yds a couple of times a week, and if I push my pace much, I'm wiped out much of the next day.

I was involved in cancer research as a medicinal chemist for 20 years, including helping make treatments for leukemia (AML) and lymphoma (ALL), and indolent CLL is the one to pick if you have to pick one. (I didn't know anything about CTCL, but the symptoms (rash) are now completely controlled by sun baths on my deck 2-3 times a week.) One oncologist (for CTCL, she picked up the CLL when she immunophenotyped my CTCL) said it was obvious that my conditions would impact my exercise and energy level. However, two other oncologist (a CLL specialist and a general hematologist) I've seen said there is no way that my CLL could lead to any symptoms at all right now, because my white cell count varies from high normal to just slightly above normal. (Without the immunophenotyping I'd still be undiagnosed.)

This is all frustrating to say the least. I get my best work done in the morning, provided I didn't exercise too much the day before. I use caffeine to function in a regular way I never had before. My sleep is inconsistent, as it has been for many, many stressful years, and I have GERD/hiatal hernia that I struggle to control, making the picture even more complicated.

"Watching and waiting" is no fun, and I'd love to get my old energy level back, or at least have a clear explanation of why I suffer from fatigue/tiredness/lack of energy and motivation so much of the time.

11 Replies

  • @prhmann,

    Thank you for your post.

    I'm so sorry to hear that you have such energy issues. It seems like some doctors who are quick to deny the CLL/tiredness connection, simply look at red blood cells and decide if they are sufficient, your energy should be as well. So the hematologist says, "Not your blood. Not my concern" and send you back to the GP, who send you to the cardiologist, who says "Not your heart, not my concern." ...and so on. Yet, there is clearly some research that DOES show a connection between CLL and tiredness (often discussed on this forum, as at ) . So what to do? After ruling out the obvious heart/blood issues, do we go back to the GP or back to the haematologist? Is it necessary to get a CLL specialist (who is aware of the CLL/fatigue issue) involved? Do we just make such assertive pests of ourselves that the GP/hematologists get past their own "conclusions" and help us figure out what should happen next?

    I wish I had more answers than questions. Like you, I like to swim. I also hike, and I know that those uphills are requiring a lot more stops to catch my breath than they used to. I know I don't swim quite as fast. Is that CLL or is it just (in my case) a little older and a little fatter? I'd certainly argue that if we have been keeping up a fitness routine, exercise should NOT be getting noticeably harder, certainly NOT to the point of fatigue for the rest of the day and into the next.

    If you find answers -- or even good prospects of answers, please continue to share with us. It is a common issue, even with W&W status.

  • Thank you, shoshanaz, for this post. It is so informative and confirms what I have been through with my trip on the CLL pathway. I had noticed, as prhamann had said, fatigue and lack of stamina in my work, as a repair technician, for several years, and after checking different issues was told that I did indeed have CLL. But the oncologist said that it really was not the cause of the fatigue, as my red blood cells were great. So, I have just learned to pace myself, and avoid working out in the sun when it gets above 75 degrees outside.

    I have also noticed, as prhamann said, that after working out in the garden really hard, the wiped out feeling hangs on a day or more, which here on our small farm, is a big hinderance to getting things done.

  • CLL fatigue is considered by some to be a misplaced immune response, caused by good B cells, releasing chemicals, cytokines, that trigger a sick response, that is often misunderstood as fatigue...

    Certainly over my 14 years of mind numbing sickness/fatigue, as my CLL began to progress, the fatigue lifted considerably... after treatment, I felt 20 years younger... 😄

    It is insidious... it tends to be worse early on, then improves to some extent. Treatment usually ends the cycle, but not always and not for everyone...

    Learn your limits and try to keep within them, and they will change, often daily...


  • Thanks for the info. Seems like they could measure the cytokines-after all the total bill for what they did measure (before insurance) was $14,000. They are still deciding my share.

  • I am not a physician and your cancer could well be the cause of your fatigue however you mentioned inconsistent sleep. You may not be getting good Rems sleep. You can get your sleep assessed these days at sleep clinics where you stay overnight and they assess your sleep patterns and it might be worth exploring so you could get better rest. I am stage zero and have no less energy than I ever did. My CLL was found when they were looking for something else.

  • Thanks-There is a sleep clinic in my county I can check out.

  • I agree with a sleep study... as nodes expand they can contribute to sleep apnea... do a search here there are many discussions on this topic...

  • As a person who is very active and who has experienced a similar frustration, the only advice I can give you is just keep moving as well as you can, and just do your best. It only goes downhill faster if you don't. The fatigue is real, and it stinks, but at least you are starting from a very high level of activity. Hang in there, and happy swimming and walking. That's not really an "answer" but I hope it helps a little.

  • Thank to you, and to the others, for your commiserative comments. It does help to know that others have similar frustrations, and that I'm not just being silly.

  • Yup... my doctor said..don't nap...walk... counter intuitive, but it made a huge positive impact in my case...

  • Hi prhamman

    Some good advice from others as usual. I too am early stage CLL and did go through a period of fatigue, and still have my days. I now listen to my body, walk and exercise to how I am feeling, and as others have said pace myself. I find this way I enjoy life.

    I found reading some of Prof Fegan's articles, they can be accessed via this site, made me more aware and sympathetic to myself. I felt much better reading someone who seemed to understand.

    My son also has a chronic illness affecting his immune system, he said welcome to the world of chronic illness and be kind to yourself.

    All the very best


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