Re: fatigue and FCR RX

[Guest guest]

Hi Larry - I can't help with any suggestions about extreme

fatique due to FCR treatment since I am still watch & wait.

However I have had to find ways to keep my spirits up and

maintain a positive attitude since my CLL Dx.

I have eliminated as much of the negative from my life as

was possible. Especially people with a consistently

bad/negative outlook on life. I no longer watch films or tv

programs that are long on the negative and short on the

positive. Same with books, plays, music, etc. Instead I have

found alternatives that are entertaining without the

" negative spin. "

Many of the programs on the USA cable network are light,

breezy entertainment (White Collar, Covert Affairs, Suits,

Burn Notice, etc.). The early seasons are all available on

Net Flix.

Some British BBC/ITV series productions are also in this

category - Monarch of the Glen, North & South, Lark Rise to

Candleford, Poldark, Sharpe, etc. All these series are

available on Net Flix.

For books - I'm now into spy thrillers by Vince Flynn &

Silva who each have a series of well written page

turners.

For music I concentrate on pop, classical & jazz that wake

up my endomorphins (sp?) and make me happy.

It's critical for me to recognise and enjoy the many

blessings I do have in my life. Family is important and good

friends are priceless. Making time to be with the people

that I love is a source a much joy for me. And if you are

spiritially/religiously inclined this can be an area that

brings much happiness.

Warm regards - Patti

[Guest guest]

Larry,

I just finished one cycle of R+Treanda which I couldn’t

take, bad rash encompassing my whole body.

Two or three weeks later was changed to R day one and FC

second, third and fourth day.

I finished my cycles OK and found myself to feel like a limp

noodle. I have never been this tired, zero energy. I have

gotten Procrit and IVIG in between cycles.

I did read that FC causes fatigue.

I have this disease since 1996. This is my second time in

treatment. Had a nine remission.

Larry, you will be fine!

Joan

[Guest guest]

I went through 4 treatments of FCR last year at the age of

64. I played golf twice a week, did my normal house duties,

mowing the lawn, taking out the garbage, etc. FCR 1st day,

F 2nd day, FC 3rd day Neulasta 4th day. Of course, had

saline solution along the way.

Each of us is different and react differently. I would just

be cautious.

Alan

[Guest guest]

Good Morning Larry,

I'm sorry to hear you're having trouble with FCR. It does

vary with everyone.

I had my 1st round of FCR in December of 2004 at the age of

60, after three and a half years on watch and wait. I felt

so bad after the first treatment I told my wife I was not

going to take any more treatments! However, in about two

weeks I felt better and I completed all six rounds of

treatments, after each round it took me about a week to

recover. I too had the same side effects as you, fatigue was

the worst part of it. What helped me the most was exercise,

I made myself go for walks when I thought I couldn't get out

of bed. It helped tremendously.

The other thing is getting rid of all the negativity, if

possible. This is harder to do than one might think but it

sounds like you are on the right track. I try to take a

serious but light hearted look at life and things,

especially mine and how I interact with others. A book I

found, * " All I Really Need to Know I learned in

Kindergarten " by Fulghum*, helped me get rid of some

of the stress I was carrying around.

Good luck on your journey ...

Dave Tipton

[Guest guest]

I am post tx since July, asked my doctor when will my

endurance come back and he said to be patient it can take 9

-12 mo. to regain strength and energy. I am impatient but

do see an improvement though slow. Best wishes for your

recovery.

[Guest guest]

Larry,

Tom was treated with FCR in 2004 when he was dx with CLL. I

know that he had some hard days but he managed to keep

working. He was barely 50 years old though.

This treatment is cumulative and some of the bad days can

get very intense as each round is infused. Tom would zone

out for 3-4 days following infusion and then he would start

feeling some better. He always felt the best just days

before the next infusion...ARGH!

I am not a doctor, but I wonder if your Dr. would agree to

your taking a sleeping med in order to get the rest your

body needs while in treatment. I have always felt that rest

and sleep is one of the best ways to heal. Hang in there.

As my Mother in Law used to say, " This too will pass " .

Lou

[Guest guest]

Alan,

If you don't mind me asking how are you doing now? Do you

think this is behind you and are you in complete remission?

Thank you

Bakers

Alan Goldstein wrote:

/message/16086

[Guest guest]

Hi Larry,

So sorry to hear about your fatigue. I've not had treatment,

but still have days that I drag myself through.

I thought I'd address your non-medical question about what

you watch on TV. I recently was staying with my elderly

mother and couldn't sleep and watched some thrillers and a

scarey movie that was on TV - worse was waiting through the

long string of offensive commercials. I don't have TV, so it

was a bit shocking. Still, it was hard to turn it off. I am

thinking now that what you watch is like food. Is it

nutritious? or Toxic? You already know the answer.

Laughter is good medicine! So is beauty, the natural world,

inspiring people doing great works. Lot's of good movies

with these.

Wishes for feeling better,

Robin