Is this normal?

[robertsw]

Hi I was diagnosed in October 2015 with CLL. Recently I have felt very tired and a bit breathless. I am due to see consultant in May but am worried that it could be my condition is changing or it's just part and parcel of CLL.

[Newdawn Administrator]

I'm in the same position Wendy and will also be discussing it with my haematologist next time. I don't want to go into too much identifiable details because you haven't restricted your post to the community but it could be reducing haemoglobin levels in the blood causing fatigue and breathless and/or an enlarged spleen. Sometimes however, people with relatively normal blood levels experience tiredness that's hard to explain and the medics are less willing to accept as CLL related.

Have you any idea of your levels/staging etc? Has there been a drop in your red blood count/haemoglobin levels? Has anaemia been mentioned?

Other conditions can also exacerbate and anxiety is also associated with breathlessness and fatigue. Much depends on the severity and many CLL's live with these symptoms for many many years and still not require treatment.

Hope you find some answers, best wishes,

Newdawn

[robertsw in reply to Newdawn]

Thank you so much for quick reply. I am new to site so not sure what I should have done to open up to community? I am also a dinosaur with technology!!! I see him on 25th May but I am going away before that so just see how I go.

[Foggymind in reply to robertsw]

Wishing you a very warm welcome to the group Wendy.

You might like to read some posts that been written especially for newly diagnosed folk or new to the forum like yourself. The posts consist of lists of things we can do to help ourselves deal with our CLL. The contents of these posts are pooled from a wealth of knowledge shared by the folk here and are easy to understand and digest. They can be found by clicking on the following links below:

Coping Strategies - Part 1 Improving our CLL journey

healthunlocked.com/cllsuppo...

Coping Strategies - Part 2 Living with CLL

healthunlocked.com/cllsuppo...

Coping Strategies - Part 3 Keeping our spirits up

healthunlocked.com/cllsuppo...

Take care and good luck for the future.

Kevin - Essex, UK

[robertsw]

Thank you. I obviously had signed in wrong as I am Wendy Roberts. I am also a dinosaur with technology!!! I will have a look at the sites although to be honest I think I have not looked into it too much as I don't want it to take over my life 😉

[Foggymind]

Sorry for the confusion over your name Wendy, my apologies. A very fair comment you make about not wanting the subject of CLL taking over your life, reading up on lots of material on the subject is not everyone's cup of tea, especially at the beginning of their CLL journey. The links I have given are really just lists of hints and tips, something you can just dip into.

Best wishes

Kevin - Essex, UK

[DMary]

Welcome. I've only been here a short time myself - and unlike you I was only diagnosed last summer. Not long after diagnosis I experienced an increase in fatigue and breathlessness, too. It was probably a combination of falling hemoglobin and anxiety. Before discovering that I received lots of support here and I was counseled that the instinct to check out breathlessness is a good one. In my case it wasn't serious enough for immediate intervention, but it's not a symptom to ignore. Welcome again, and best wishes along our mutual CLL journey!

[Yelverton]

Thanks you Foggymind. Very interested reading list of vaccinations. Pre CLL diagnosis just strangely had done research and decided to have Shingles Vaccination which I couldn't have had now. Pretty comprehensive list and am going to discuss pneumonia vaccination with my Doctor this week plus updating some of the others.

[Foggymind in reply to Yelverton]

Hi Yelverton, pleased you found the documents useful.

Take care

Kevin - Essex, UK

[scarletnoir]

As far as I know, anaemia is not unusual in CLL patients. I developed it some time after treatment, but I expect you can get it at any time. The only symptom was breathlessness when taking exercise (walking up hills, for example). So maybe that's what you have - have your bloods been tested for it?

It was easily 'fixed' in my case with iron tablets (ferrous sulphate) and a B12 replacement (cyanocobalamin). Hope your breathlessness is also from a similarly easy to treat condition. Good luck.

[tryandtry]

I've had BOTH of these symptoms before - several times. And, they have usually been a sign that my CLL is "acting up", and that some sort of CLL treatment is about due.

Sorry if this is bad news, but that's been my experience (I've had CLL for 14+ years).

PS - As soon as I got treatment, they went away.

[MsLockYourPosts Passed Volunteer]

To restrict your post to community only click on the v at the bottom, then edit and scroll to the bottom where you can change the default to community only. You may want to do that, both because you have used your real name, and because people are more open about sharing their experiences in "locked" posts. You need to change the default each time you post. The original post controls all of the replies.

You might want to check in with your hematologist or your GP - maybe ask about having a CBC done to rule anemia in or out. Hopefully you will find an easy fix like Scarletnoir did!

[jettyguy]

Hi Wendy. I was diagnosed 15 months ago with similar symptoms to yours. I was very fatigued,could not walk for three minutes without coughing and candidly I couldn't hold a prolonged conversation without gasping for breath. My platelets were at 113 and my RBCs were below normal. This is what helped me. And I hope it helps you. I switched to a macrobiotic diet. Now I don't expect you to necessarily do this ,as it is very strict. However, I did five major things that can be accomplished on almost any good nutritional regimen. I started eating foods that were rich in folate. I started eating foods that had B-12. I increased my Vitamin D level,so it jumped from 21-53, by supplementing and taking walks in low sun conditions.(not looking for skin cancer) I began a program of walking or jogging at least 2miles 5x a week. Within 4months I dropped 40 lbs. The bottom line...my platelets went up dramatically from 113-172. They bounce around, but still remained better than ever before, for the next 11 months. My cough totally went away. My energy level went through the roof. Low platelets and low RBCs can leave you fatigued and short of breath. even if your fatigue is due to anxiety or CLL related cytokines,the exercise and the B-12 might help . Good luck.