All new to me

[Ttellig22]

Good afternoon all, I’ve been diagnosed with CLL in may I’m on the watch and wait a letter from consultant say it’s B stage, thankfully I’m not feeling un well how ever I have no energy is this normal

[lankisterguy Volunteer]

Hi Ttellig22,

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Welcome to the group that none of us wanted to join.

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You will likely get many greetings from other members, and assurances that we all were in panic when we learned of our diagnosis.

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But take many deep breaths and know that you will have a long time to accept your diagnosis since you will likely have several years before you need treatment.

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Then when that happens, there are drugs approved in the last 10 years that will control the disease ( it has been compared to high blood pressure or diabetes that can be controlled with daily medication and improved life style - exercise, controlled diet and attention to sanitation/avoiding infections).

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There are lots of things posted here for climbing the learning curve- this is the best starter that may take days or weeks to digest it thoroughly, but it is a gold mine of information, so keep going back to read more: healthunlocked.com/cllsuppo...

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It is not clear, from your profile, what country and health system you are in, so please follow these suggestions, especially #6: healthunlocked.com/cllsuppo...

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I mentioned lifestyle improvements- see some of them here: healthunlocked.com/cllsuppo......

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Len

[Panz]

Welcome! I really can’t add anything to what Len has said and suggested you read. I am very happy you found us as early as you did…..there is so much support here on any level you need.I will tell you that I have had CLL for 33+ years. Am doing super and am on my third line treatment meaning meaning the third kind of treatment. I am currently on Calquence or Acalabrutinib. Life is great!

All the very best and remember we are here for you!

I am not sure where you live but if it is in the USA…..have a super Fourth of July 🇺🇸!! If, you live else where have a lovely weekend!!!

Panz 🙂🙏💕☘️

[Yalokin]

Welcome to our community.

Perhaps a little more detail would give us more of an opportunity to help you.

The help here is one of the many privileges you get after signing up, along with the love and attention from the many people here from different countries.

Because people all over the world are still people.

I welcome you and embrace you with the wish that you will be healthy for a long time.

Also, I love cherries and am currently eating them.

Yalokin

[Pacificview]

Welcome, you have come to the right place. Great info and support here.Yes, low energy are one of the complaints.

You can breeze through and read others accounts of there disease course. That will give you great comfort.

Typically watch and wait you just go on with your life. You get quite a bit of upfront testing in. Then just deal with issues as they arrise and try not to worry. As CLL is usually a very slow progresing disease.

All the best and again welcome!

[Missmuffinandme in reply to Pacificview]

I finally got on this site. Finally got to safari to let me in. Not very computer savey.It has been about a year I was diagnosed with CLL and still in the WW phase

I am normally very active and was energetic,but I find myself tiring toward the evenings.

I see my oncologist every 3 months and so far WW. MY white count is rising but he tells me he isn't concerned that it is not that big of a rise. Can someone advise me with what I can take ,as vitamins or such to help. I do keep taking them as my Dr. doesn't go into advising on any regiment of vitamins or anything. I am glad that I only get tired .The original sign that told me something was going on was my lympnodes on my neck . After biopsy it was labeled CLL. Thanks for hearing me out. I am a retired teacher and am somewhat long winded. HAHA. Staying positive and my strong faith keeps me as positive as I can. By the way I am

a young-minded 82 year old.

[Pacificview in reply to Missmuffinandme]

Well howdy,I have the fatigue and I just work around it. No witch doctor cures that I have found.

Your post is not long winded at all. Some will write what seems like a few pages. I need a nap after I finish reading one..

There are some members here that do take supplements of various types. Maybe they will chime in.

As the Doc told you, your early stage. Its been 3.5 years for me and my numbers arent bad. You can look at member profiles for a history of there experience, numbers etc.

Anyway...welcome!

[LeoPa]

If you are on a low fat diet I would say it's normal 🙂. Just pulling your leg. But not completely. Check my profile to see why.

[kitchengardener2]

Welcome to our group, the club non of us signed up for. Once you get over the initial shock, you will find a sort of acceptance that you can continue to live normally whilst avoiding dangerous crowd situations. I was diagnosed in 2018 and had three years watch and wait before starting treatment last August. Stay safe xx

[dmmck]

Welcome. You have found a wonderful place for information and support. And yes, fatigue is very common with CLL. I just had to learn to live life at a different pace. When you are tired, remember to be kind to yourself. Come back here for support whenever you need it.

[wizzard166]

Hey T

I'm on W& W for a little over four years now, and can tell you that I was having a good amount of fatigue when diagnosed. Lately it seems to be a little more, from the standpoint that I used to lie down for quick thirty minute pick me uppers only around 4pm daily. Now it seems that if I eat a big breakfast I need to lie down around an hour after that. It varies with some days being slightly better than that. The additional factor however is that I am now 75 and imagine getting old adds to the fatigue issues. I also used to notice that if on a trip and wanting to walk through a downtown area or historical area of wherever we went, I had to sit down every twenty minutes or so for only fifteen minutes. Then I could keep going.

Over the years I've read a lot about fatigue with CLL and it clearly is there in the very early stages, and doesnt get better over time; unless, treatment was started and went very well.

One of the best descriptions I saw in a post on this site described it as draining fatigue that can't be relieved by resting; unlike, fatigue of non CLL people who might just be out of shape.

I also know from reading on this site, and from my CLL Specialist that getting some exercise will improve our overall handling of this disease, and our longevity. I used to go to a gym three days a week before the pandemic, then stopped out of fear of COVID. Walking is a great exercise and you can't get enough of it.

Carl

[wizzard166 in reply to wizzard166]

I forgot to add that as the illness progresses our Red Blood Cells and thus our Hemoglobin keeps dropping. At some point the difference in oxygenation of our blood has to make us much more tired. I think however that is another part of the fatigue we feel, but not the only factor.

I've learned that it is actually how low our Red Blood Cell and Hemoglobin numbers drop, that is an important factor in the doctor determining when to start treatment. Another factor is how low the Platelets drop, out of fear of excessive internal bleeding. These two factors seem more important to a CLL Specialist, than does the increase in White Blood Cells (and in particular the Lymphocytes increase more than the total WBC increase). So we all see our WBC constantly going up over time, but pay more attention to the numbers of RBC and HGB and Platelets.

Carl

[Phil4-13]

Ttellig22, WELCOME! You are in the best group to get your questions answered and concerns calmed. I'm 73, W&W, and diagnosed in 2020, it's thought it started in 2018. A routine blood test resulted in my primary doctor sending me to a haematologist. I stay active everyday and simply stop to rest if needed. I do wear a mask in close crowds to avoid any of those annoying viruses out there. That, to me is most important, since we are immune compromised. Be comfortable with your doctor and bring any questions you have to this group. Someone will have had a similar or the same situation. 🙂Sandra