People living with CLL treatment as I'm about to start treatment. Thanks John.

[Jsceltic67]

People living with CLL treatment as I'm about to start treatment. Thanks John.

[gardening-girl]

Greetings John, I see that you have just joined us. We welcome you with open arms! Do you have a specific questions? Are you asking in general about living with CLL treatment? If the latter, I can say that I've been living with CLL treatment since 1997, and am doing remarkably well. What treatment are you about to start?

[Jsceltic67 in reply to gardening-girl]

Just about to start treatment, don't what they are giving me yet,what are you on,

[gardening-girl in reply to Jsceltic67]

John, I've been on ibrutinib since 2015. To see what came before that you can click on my avatar to see what all I've been on since 1997.

[Sushibruno in reply to gardening-girl]

Amazing!🙌🙌

[Jsceltic67 in reply to gardening-girl]

Hi There,sorry late reply,starting with 2 sessions of Ritvximab,Thanks John.

[sidesy]

Hello John, welcome to one of the most friendly and educational/ knowledgeable boards to post and read on CLL. Just good people full stop 😉 I've been diagnosed 12 months ago and still on "watch and wait" ....so,no drugs, just blood tests and scans. My WBC count (there are many other markers but this one suits me) has gone from 35 through to 155. Mostly rising between 20 and 50 % in my 3 month consultations. I was due to start Ibrunitib / Ventoclax three weeks ago but my count only went from 155 to 160 so we are leaving it until September now so let's see what the next round of blood tests show. I do think removing both refined sugar and processed foods has helped me reach an equilibrium for now but this is guess work only.

Living with it until now ....for me it's just been the lumps in my neck , groin and under my arms which have grown and shrank ....and the chronic tiredness that is very hard to predict. Frustration of not being the same active person I was. But in general I still work part time again night (I'm a night owl) and this allows me to sleep for a good 8-12 hrs when I get in. Again I think this had helped me.

Whatever you may feel you're not alone , there is wealth of knowledge to explore on this platform from far more educated people than myself so ask away ....

Gary

[LeoPa]

You came to the right place. Once you know what treatment you will be getting you can search for posts with experiences with that specific treatment.

[CLLerinOz Administrator]

A very warm welcome to you, John. As you've already seen, you've joined a very supportive community.

The time when you know you'll be starting treatment can be uncertain, especially if a treatment choice isn't clear yet, and many of us know how that feels.

Feel free to ask us any questions you might have, whether that be about the experience of awaiting treatment or about any particular treatment/s you may be offered (once you know that). In the meantime, you may find some answers to more general questions in our Pinned Post section: healthunlocked.com/cllsuppo...

You've posted what we call an 'unlocked' post which is fine so long as you are happy for it to be seen by anyone - ie it will be available to people outside our community who might find it on the internet. You can change your post's status and lock it to this community only if you wish to make it more private. To do that, use the Edit option that you'll find by clicking on 'More v' under your post. You can then change the Share setting at the end of your post from the default 'Anyone' to 'Community only'.

CLLerinOz

[thompsonellen2]

Welcome and good luck with your treatment. As a person who has been though many, the important thing to know is on treatment you will feel a lot better and in my case they have allowed me to fully be "living" again.