iwCLL 2013: Dr. Sharman discusses why we feel so lousy, and much more.

[bkoffman]

Hi friends

In Part 4 of my conversation with Dr. Sharman at iwCLL 2013, we start by discussing the lousy tired feeling that sadly so many of us are all too familiar with. And even more sadly, that too many community oncologists seem not to be familiar with or in total denial about our truth that CLL could be the primary source of our achy tired feelings. And then we go on from there.

Please seem my blog: bkoffman.blogspot.com

Parts 5-7 will follow in rapid succession.

And more, then off to ASH

Be well and Happy Thanksgiving.

The CLL community has much to be thankful for, but until all of us are including in the lucky group, getting and staying in deep and easy remissions, we have more work to do.

Stay strong.

Brian

[AussieNeil Partner Administrator]

Well worth a listen - explains why many of us feel like we are always about to come down with an illness.

Thanks Drs. Koffman and Sharman.

[chevy in reply to AussieNeil]

Hi Aussie Neil I assume u r from Australia . If so so am. I'm finally starting chemo on the 10,11,12 after w n w for 12 mths. I am 44yr and just been told to finish up work as I do community nursing.i find this site good and comforting knowing that we all often feel the same .

[AussieNeil Partner Administrator in reply to chevy]

Hi Chevy,

Sorry to hear you are starting chemo shortly; I presume you'll be starting FCR? Have you been asked to finish up work temporarily or are you facing a career change? It's particularly tough for us with CLL when falling immunity impacts our chosen career in fields like medical, education or child care.

Have you made contact with the Australian Leukaemia Foundation? I found their education courses very helpful and there's a monthly CLL teleconference hosted by daisyruby1; we just had the last one for this year last Monday. They also supply other support services that may be of assistance to you.

Let us know how you go,

Neil

[chevy in reply to AussieNeil]

Hi yes I'm having FCR I will be going in for 3 day cycles every 28 days. I have a very supportive husband and children and family n friends. My specialist told me to give up work until I finish chemo when feeling better can go back , my boss is very understanding .thanks for replying to me . I'd like to know how u r going as we'll. this CLL is very frustrating mentally emotionally and physically . Take care.

[AussieNeil Partner Administrator in reply to chevy]

Good to hear you have such supportive family, friends and boss - that's a huge plus. I hope all goes well for you and you can recommence work after this unexpected/unplanned leave. Make the most of it and use the time as a gift to rethink what you want out of life. Even if you don't make any changes, you'll have had the opportunity to take a breather from the 'daily grind' and have the extra assurance that you are doing what you want to do.

I'm doing well - better than expected. Thanks for asking.

[bkoffman CLL CURE Hero in reply to chevy]

Depending on many factors (age, counts going in, prior therapies, disease burden, and co-morbidities), FCR can be relatively gentle chemo. When where you work is a low infection risk setting, more than a few CLLers have just missed the days in the infusion chair and maybe one or two more

[brian_in_Seattle in reply to chevy]

Hi, I just finished with 5 rounds of FCR. I am 62 and was in excellent shape before needing treatment: hiking, skiing, running, etc. I have to say that I found the treatment not bad until the 4th and 5th rounds. I had to cut back 30% on the chemo toxicity because my counts were too depressed and I was not able to maintain the 4 week schedule. The 4th and 5th rounds, even though reduced in terms of toxicity, were still really difficult. I spent most of the last two months on the sofa. I have just now returned to work, after nearly 5 months off. Was it worthwhile? Yes!! I am now in remission. But the toll it has taken on me has been pretty heavy (and on my wife who has been with me every step of the way).

Physically I ended treatment a very weak fellow. A walk of a few blocks was all I could do. Now I am feeling better, about 5 weeks from the last infusions, and I have a routine of 1hr walking in the morning when I am feeling best. I have added message, PT work, and acupuncture as ways of speeding up the healing process. Napping is also good. Try to keep your eye on the goal and expect that this will be tough on your body but you will eventually get back to normal. One thing I did not expect: I gained 15 pds, about 10% of my normal weight.

Good luck!

[bkoffman CLL CURE Hero in reply to brian_in_Seattle]

Most doctors would not use FCR in those >65. You are a healthy 62 year old, but no matter how well we are, our bone marrows is less resilient as we age to the stress and damage from chemo. Napping is always good.

[brian_in_Seattle in reply to bkoffman]

Thank you!

[jangreen]

Hi many thanks for these videos. Best wishes

[chevy]

Hi everyone I'm having round 3 of FCR next week last lot wasn't so good. Now have a porter cath put in my chest for better infusion. I would like to know if anyone else suffers pain in their bones especially hip area. Good health to u all.xx

[AussieNeil Partner Administrator]

Chevy, have you been given granulocyte colony-stimulating factor (G-CSF) medications filgrastim (Neupogen) or pegfilgrastim (Neulasta) to boost your neutrophils? These are commonly recognised as causing bone pain in 20 to 50% of chemo patients.

See this Medscape article, where the use of antihistamines is noted but not recommended (purely because there has been no independent trial) as a possible treatment:

medscape.com/viewarticle/56...

If this pertains to you, it might be worthwhile suggesting giving antihistamine treatment a try to your specialist.

Hope this helps!

Neil

[Hidden]

Hi chevy

You have had lots of excellent advice, I just wonder if it is worth requesting an Xray to rule out any other causes for your hip pain.

Best wishes

Bubnjay