The Leukemia & Lymphoma Society Community: Message List

Re: Met a Donor today

communityreply@lls.org — Thu, 04 Oct 2012 22:50:10 GMT

Thanks for doing that

Re: New Discussion Boards CLL

communityreply@lls.org — Sun, 06 May 2012 18:36:12 GMT

So do I. They saved my sanity and provided me with an education. But I'll giv this my best shot!

Re: CLL and Thyroid?

communityreply@lls.org — Fri, 03 Feb 2012 23:58:58 GMT

Just asked my doctor on my last visit in December if my cll was effected by the levoxyl I take for hypo thryoidism. Seems there

Is some evidence that makes some doctors say yes but it is not really conclusive.

For my I'd bug my GP for higher doses because I wanted the energy they provide. Now I let them keep me just in the normal range and don't

Push for the higher end. CLL has had little effect on my life other than a heavy dose of real curing feer.

Hoping to stay on WW for many more years.

Re: Leukeran 2mg Film-coated tablets (chlorambucil)

communityreply@lls.org — Thu, 05 Jan 2012 23:24:26 GMT

Last wrote in Oct.2011. All forwarned I returned to onc end of December. Expecting my WBC to be well over 500,000. But it was only 280,000. That was an unexplained decreases. I don't go back untill end of April !!! But I caught a cold over the holiday, fri will be day 10 so I'm thinking it may be time to start the antibiotics even though i only have a slight fever in the very early morning hrs.

Re: I have been recently diagnosed with CLL. I know a little bit about the disease because my father had it. How do you manage the fatigue?

communityreply@lls.org — Sat, 05 Nov 2011 03:33:16 GMT

Hi,

We are all so different and there is sooo much to learn and work thru but we all seem to come to the right answer for ourself.

So if my answers are useful for you good - if not - maybe they will be to someone else.

Hard as it was for me to beleive the more I moved the less exausted I was. The more I was with other people the more energy I had.

Started with a gental yoga class (years latter still going weekly and do at least 30 min every morning to get moving.) My emphases

was on gental I am not about to add any pain to my life - but I've gained understanding - stamina - strength - energy. Its much about pampering me. In the warm weather I add walking

in the morning before work. Commitment to my yoga practice, to my walk, to my job have all given me energy and continue to do so.

Last year I added and exercise class to strengthen up the heart.

Why do all the activities that I would have thought were energy drainers added energy for me?

Why do I feel energized when I know my great grandchildren are comming to visit? They make me move and laugh.

Your question "how do you manage the fatigue? I Move and Laugh.

I caught a cold the other week, found myself full of feer So easy we can get caught in that scarry trap.

I'm fine cold gone - drank lots of water - skiped the exercise class - Yesterday celibrated with a frien - tomorrow I'm walking with Our Light the Night Team. Lots of tender loving care to you.

Kirsten

Re: Leukeran 2mg Film-coated tablets (chlorambucil)

communityreply@lls.org — Tue, 25 Oct 2011 16:28:21 GMT

Thanks Goodchat

Now I have some reading to do - encouragement and learning new info helps keep my fears in check!

Re: Leukeran 2mg Film-coated tablets (chlorambucil)

communityreply@lls.org — Tue, 25 Oct 2011 16:23:05 GMT

Thanks - so verry much!

Leukeran 2mg Film-coated tablets (chlorambucil)

communityreply@lls.org — Sun, 23 Oct 2011 18:50:32 GMT

Oncologist wants me to think about taking this soon. does anyone know anything about

the results. My wbc dubbled ever 3 months for about 2 yrs. then a sudden drop in % of

increase - but sence the last 3 mo its just shy of dubble again. Now the wbc is 286^ and the red

is dropping. Platlets are still holding. Otherwise I'm pritty healthy - Do cardio with weight lifting

2 or 3 times a week and Yoga daily. Any info or where to get info appreciated.

I got pritty use to wait and watch and feers put to rest thanks to this sight. But now that

they want to start doing something the feer sneek in.

Re: Podcast - Dr. Michael Keating MD Anderson ~ Changing landscape of CLL

communityreply@lls.org — Sun, 09 Oct 2011 01:04:16 GMT

Thanks for Posting this. Very encouraging. Just love things that chase away my feers.

Kirsten

Re: New to this site and CLL.

communityreply@lls.org — Fri, 09 Sep 2011 17:06:05 GMT

Welcom JLynn,

My CLL was found the same way In Nov of 2009 I'm still seeing doctor every 3 mo

on W & W and still wonder about every change is that a life change or a cancer change.

So far nothing has been a match to what they are looking for. I havent had any of the problems

you have- but I try not to think about this much I just figure it is one of lifes lesser problems

that wants to take over. I do yoga and go to a gym for weight lifting and heart exercise. Do whatever

you can to stay healthy - It make life more fun and helps keep the chemo as far away as possible.

Some people here are shore to point you to sight for more education - they know better than I.

Good luck and may your W & W last a lifetime full of smiles.

Kirsten