Re: When to treat - Poconos Chris

[Guest guest]

- a good general rule is not to treat if you do not have to.

Have you carefully checked your red counts? You could have a touch of

anemia.

It would seem that something is going on if you are so extremely fatigues

w/o any obvious symptoms.

W/o the extreme fatigue I'd say forget it, but the 70% is a high number.

Are you in good hands?

Yes, Rituxan might be a good first choice, but nothing is a free lunch.

What is your HGB and your platelets?

I have a house at Jack Frost......

In a message dated 2/19/2011 4:18:41 P.M. Eastern Standard Time,

coalcrkr2001@... writes:

Hello,

Is Rituxan or other treatments that are less than full chemo helpful for

those of us in early stages of CLL who experience fatigue, painful

(uncomfortable) nodes, slow healing, bone pain, etc.? Is it harmful in the long

run?

These symptoms have become more prevalent (on average) since being

diagnosed in 2008. My WBC is still low but has risen from around 12-13 to 19

within a 6-month period.

Being able to work (at a job that does not require a lot of physical

effort but is mentally stressful) is doable but sometimes difficult (like going

to work with a mild case of the flu). At 53 I still have a few years until

retirement but would like to increase the quality of my life; however, I

don't want to start treatment too early.

In summary, I would really like to increase my quality of life but don't

want to close the door on future treatments. My present status is able to

work (sometimes barely) and (70% of the time) don't have enough energy to do

much else.

Any help, including personal experiences of anyone who was in the same

situation and had treatment that was less than full chemo, would be greatly

appreciated.

Thanks,

R (Poconos, PA)

[Non-text portions of this message have been removed]

[Guest guest]

I am 51 and had fatigue. I have a full plate also - working fulltime,

single-mom, full-custody of 4 kids. I would try to exercise - something I

used to do by running 20 - 25 miles per week and could barely run a couple

of miles and then, instead of feeling energized, would have an overwhelming

desire to sleep and would be wiped out a couple of days. I did not have

painful nodes. I was mildly anemic from time to time but then it would go

away. I chose to get Rituxan late last year and would say I had mixed

results. I did feel better initially, but got a cold in mid-January which

led to a sinus infection and while I was antibiotics for that, developed a

high fever, cough, with some chest pain. Fortunately, within a few hours of

developing the fever, my GP switched my antibiotics because he suspected

pneumonia (never had a chest x-ray - he knew he was going to switch

antibiotics anyway and I didn't feel the need to know for sure since the

course of treatment would have been the same whether I was officially

diagnosed with pnemonia or something else.) I finished my antibiotics on

Monday but I can't say my energy is back to what it was before the cold

yet - although that may come.

Note that my onocologist did not recommend treatment but allowed for it.

I consulted with a doctor working with Dr. Byrd at OSU afterwards (because I

used up my out of the pocket maximums and had someone to watch the kids for

a couple of days) and they said that I did not clinically meet the need for

first line treatment and would have preferred a different one - I think it

was ofatumumab. But I felt the same as you - that I needed to improve the

quality of my life now. I guess I still think it was a good decision but

recent sickness was probably due to a temporarily lowered immune system from

the Rituxan. So the jury is still out whether it was wise or not. But it

is pretty depressing to be tired all the time and not be able to do the

things you need to do. I have read of others that are able to do Rituxan on

a maintenance basis and they have felt good for years and that weighed into

my decision.

Ruth

On Thu, Feb 24, 2011 at 2:20 PM, <jb50192@...> wrote:

>

>

> - a good general rule is not to treat if you do not have to.

>

> Have you carefully checked your red counts? You could have a touch of

> anemia.

>

> It would seem that something is going on if you are so extremely fatigues

> w/o any obvious symptoms.

>

> W/o the extreme fatigue I'd say forget it, but the 70% is a high number.

>

> Are you in good hands?

>

> Yes, Rituxan might be a good first choice, but nothing is a free lunch.

>

> What is your HGB and your platelets?

>

>

>

> I have a house at Jack Frost......

>

>

>

>

> In a message dated 2/19/2011 4:18:41 P.M. Eastern Standard Time,

> coalcrkr2001@... writes:

>

> Hello,

>

> Is Rituxan or other treatments that are less than full chemo helpful for

> those of us in early stages of CLL who experience fatigue, painful

> (uncomfortable) nodes, slow healing, bone pain, etc.? Is it harmful in the

> long run?

>

> These symptoms have become more prevalent (on average) since being

> diagnosed in 2008. My WBC is still low but has risen from around 12-13 to

> 19

> within a 6-month period.

>

> Being able to work (at a job that does not require a lot of physical

> effort but is mentally stressful) is doable but sometimes difficult (like

> going

> to work with a mild case of the flu). At 53 I still have a few years until

> retirement but would like to increase the quality of my life; however, I

> don't want to start treatment too early.

>

> In summary, I would really like to increase my quality of life but don't

> want to close the door on future treatments. My present status is able to

> work (sometimes barely) and (70% of the time) don't have enough energy to

> do

> much else.

>

> Any help, including personal experiences of anyone who was in the same

> situation and had treatment that was less than full chemo, would be greatly

>

> appreciated.

>

> Thanks,

> R (Poconos, PA)

>

>