Cll watch and wait with shortness of br3ath

[Kitty]

Has anyone experienced shortness of breath due to CLL. Diagnosed 2years ago

[AussieNeil Partner Administrator]

Welcome to our community Kitty.

Being short of breath becomes more of an issue with progressing CLL as haemoglobin drops towards the treatment level of under 100. It begins to first become evident with strenuous activity, such as climbing stairs. Improving your fitness can help. Do you know your haemoglobin count?

Neil

[Kitty in reply to AussieNeil]

Thanks for your reply. Don't know haemoglobin levels. Meeting haematology tomprrow

[Teresa252 in reply to Kitty]

Hope your appointment went well Kitty.

[Kitty in reply to Teresa252]

Starting treatment in 2 weeks

[Teresa252 in reply to Kitty]

I realize this is a daunting time and you will be worried, but hopefully treatment will go smoothly. Try to be kind to yourself. The support on this site is immense, so many lovely and helpful people. I wish you the very best of luck. Not sure what treatment you are having, but I had FCR, so if it's that and I can help with any questions, don't hesitate to ask.

[Kitty in reply to Teresa252]

Having FCR

[Kitty in reply to AussieNeil]

Met haematology today. Have to start treatment in 2 weeks.

[AussieNeil Partner Administrator in reply to Kitty]

I presume you weren't expecting treatment so soon? You'll find plenty of shared experiences and information from our community members about your proposed treatment and tips on handling any side effects by searching as explained here: How to search for answers in previous posts: healthunlocked.com/cllsuppo...

Further, if you write a new post sharing what you've been told, you can anticipate plenty of assistance now, through your treatment and beyond. Ireland also has an active support community CLLIreland who should be able to help you with country specific tips.

Look forward to feeling less breathless within a month or so after starting treatment. My haemoglobin eventually increased by 50% to my best results in 15 years!

Neil

[lankisterguy Volunteer]

Hi Kitty,-

You may find this reply useful, it was to another posting about strange symptoms:

healthunlocked.com/cllsuppo...

-

Len

[guzzifan]

Hi Kitty, You can get shortness of breath from CLL if you have very large internal lymph nodes pressing on the wrong parts. That was what precipitated my current treatment. This can be a separate issue from low haemoglobin. Cheers. -Jim.

[Kitty in reply to guzzifan]

Met haematology today. Have to start treatment

[AudeRambler]

Hi Kitty. I was also diagnosed two years ago and am likely to commence Rituximab in a couple of months. Shortness of breath was one of my first health alerts leading up to diagnosis. Played havoc with my love for hilly climbing! I have found though, that it does come and go. Some days I get short of breath just going up the stairs and on other days can walk an hour or two perfectly easily. As a few other symptoms also tend to come and go, I have wondered if it is the body’s way of making an adjustment as the disease progresses and then as it adapts, things settle for a bit? No evidence for this, just a personal thought from my own experience. I now have an ebike as I could no longer manage hills on my hybrid and all summer I have been out 2-3 times per week for around 25-30km each time on it and since then, I’ve noticed I am less breathless…..I’ve come to realize that we all have very individual journeys and hopefully you will receive a range of suggestions, some of which may help you. Bon courage

[blowinginthewind]

Yes. We assumed (docs and myself) that it was due to the air being very very cold, my fatigue, and CLL generally. End of 2019 it was quite bad, and it got worse. I felt very very poorly one day, so bad that I was concerned I might have a blood clot on my lung. Phoned GP, who thought the same as me. So dialled 999 and was taken to hospital. After a lot of faffing about - local hospital isn't great - I was diagnosed with a blocked coronary artery and given a stent. Came out of hospital 3 weeks before lockdown.

If you know where your glands are enlarged, or have any scars etc do warn them. I had a benign lumpectomy 15 years prior to this, and my also my lungs have a lot of enlarged lymph nodes. The cardiologists didnt know this and came and told me they thought I had breast and lung cancer. I explained why I knew the cause of these things and they still weren't happy. Thankfully, I have the stent put in another hospital.

But do get yourself checked out for the breathlessness.

[neurodervish]

These days, shortness of breath also warrants a Covid test, just to rule it out.

[Kitty]

Covid negative