When to treat

[Guest guest]

I guess I'm the only one who has not spoken up on this issue.

It sort of boils down to:

do you go by prognostics, or do you go by symptoms?

I was on W & W for two years, didn't even have prognostics at the time, until more recently (boy, are they bad), and all docs involved in my TX decided at the same time, unanimously, that it was time to treat.

Why? Seriously low red counts. The white cells were crowding out production of red cells.....

[Guest guest]

Yes I think we will die sooner or later, everybody dies one day, it is a

fact that we are here only on a temporary basis.

I think quality of life is all that matters for many people, so when to

treat depends very much on the individual believes and convictions.

In fact over the last two months I have got to the conclusion that preparing

oneself for dying it is a lot easy than preparing oneself for living.

Some people are just contented following the doctors recommendations and

others like to research and make their own decisions, I don't think we got

an answer to everything.

Also what is good for someone is not necessary good for another, the whole

thing is very complex, and I do not think there is a white and black answer.

regards

Chonette

Re: when to treat

Posted by: " thel.g@... " thel.g@... asundancer

Sun Sep 17, 2006 2:01 am (PST)

Hey Hal,

Honestly you crack me up, your almost as bad as I am. Where is the answer,

well I'll tell you. Were all going to die from this crap ! All the stuff

inbetween simply helps us try to determine which treatment will buy us the

most time. At least thats the way I look at it. So, What is the best

treatment ? and when should you take the treatment and how much? Hahahahaha

Wish I knew, K.

[Guest guest]

Crack me up, I guess most of us will get hit by the beer truck in one way or the other. Most of us will die from something related to CLL, or made weaker by the lack of immune system created by CLL. So, the beer truck sounds good to me.

K.

--------- Re: when to treat

Hey Hal,

Honestly you crack me up, your almost as bad as I am. Where is the answer, well I'll tell you. Were all going to die from this crap ! All the stuff inbetween simply helps us try to determine which treatment will buy us the most time. At least thats the way I look at it. So, What is the best treatment ? and when should you take the treatment and how much? Hahahahaha

Wish I knew, K.

-------------- Original message -------------- From: "Hal Skye" <HALSKYEwebtv (DOT) net>

Here is a pre-Halloween doom & gloomer posted by Dr. Hamblin on the Acor list on Fri. Sept. 15 (my comments in itallics). Not for the-faint-of heart. First the bad news: "the idea of ealy tx. studies is that you can now pick out from marker studies those patients that will eventually need tx. (as in me with poor prognostic markers). For this group it might be that tx. with curative intent could succeed while the bulk of the disease is small (as in me still in stage 2); yet is doomed to failure by the time the bulk increases (as kinda in me trying to dodge the bulk increase so far with Rituxan mono tx.) sufficiently for the disease to become symptomatic." Now for the good news (as if there ever is any): "it is an hypothesis that should be tested with a clinical trial." Open for discussion. Be well. Hal Skye.

[Guest guest]

I wouldn't wait until weight loss, night sweats, or other B symptoms. I never

had weight loss, and the only night sweats I've ever had were during treatment.

I followed the advice of a CLL expert doc.

My opinion is that tracking the absolute lymphocyte count on a spreadsheet or a

graph will pinpoint when the CLL is starting to make its move. I'd consider

treatment then or at least ask the doc.

My CLL expert doc tracked the growth of the numbers. They were steadily, but

slowly increasing. Suddenly, they took off like a rocket. Obviously, something

happened. Perhaps I acquired a more aggressive mutation.

In any case, don't wait too long. (I did, even though my oncologist and I knew

treatment was needed. I wanted a particular trial, and that trial took almost a

YEAR before it opened. I don't know why he sat by and let me wait that long, to

be honest. I should have been treated earlier. By waiting, I acquired the 11q

deletion, and have been struggling ever since.)

You are at an early stage and I don't think you have to worry about treatment

soon. Just be sure and track your ALC numbers. Sudden departure from the

previous indolent cancer should be obvious; it was in mine.

Original message:

> Re: Should I participate in CLL study? -

I am gathering from Dr. Furman's excellent post below that the grounds

for deferring treatment are shakier than they once were, and that

testing for IgVH mutational status, while not foolproof, is the best

indicator of whether the disease is aggressive or not.

Is that right so far?

I've been untreated for over 6 years. The WBC and ALC numbers are

climbing slowly and there is some not-very-worrisome nodal enlargement,

which was recently checked by a CT scan. No symptoms. My new

hematologist calls me Stage 0; when the lymph nodes were noticed almost

a year ago, that hematologist moved me to Stage 1. (You pays your money

and you takes your choice!)

So, though apparently I was never tested for mutational status (CD 38

negative, likewise Zap 70), is it fair to assume that it's probably the

favorable status, and that in my case W & W is the way to go? Has enough

time elapsed since diagnosis so that I can simply wait for symptoms

(night sweats, weight loss, etc.) before considering treatment?

[Guest guest]

,

Good points. What is used to treat matters too, but When may determine What's

most feasible to use and likely to be optimally effective.

It may be, for example, that studies will show that the degree of tumor burden

predicts / determines the potential to achieve a durable complete response in

CLL, or that treating earlier with Revlimid is more effective than treating with

Revlmid when it's advanced.

My concern is that waiting as-long-as-possible to treat might not always be the

best judgment. But, of course, my expectation doesn't count, we need studies to

guide us on these questions.

Admittedly, I have more familiarity with follicular lymphoma, and have seen

evidence suggesting the importance of timing: The RESORT study testing Rituxan

first line in FL with low tumor burden suggests this expectation is shared among

investigators. And we have seen better CR rates with RIT and CHOP-R in study

participants with lower tumor burden.

If this matters less for CLL I can't say, so I pose it as a question.

Karl

>

> >  

> > Just a comment that timing of treatment seems an important question

> > and guidance is needed -- assuming instinct about its importance is

> > confirmed by evidence and basic knowledge - that waiting too long can

> > matter, as might treating too early.

> >

> > With such guidance patients will be given an important role in

> > clinical decision making. My concern is that some may be waiting too

> > long too often, as feels he might have.

> >

> > Anyhow, it would be nice to get more input on this question from

> > experts in various ed forum ... and perhaps how we might begin to

> > account for the impact of timing of therapy on outcomes in clinical

> > trials.

> >

> > Karl

> >

> >

>

[Guest guest]

Karl,

Also good points. I hadn't considered the possibility that the degree

of tumor burden might have an influence on what's used and its

effectiveness. Timing might indeed be all.

It's good to have to consider the two sides: waiting till treatment is

needed (which might mean waiting too long) vs. picking an optimum time

to achieve a certain result (and as you point out, this is the subject

of studies either under way or not even conceived yet).

I already know how Dr. Furman feels. I think the time has come for me

to consult a CLL expert in my area--and maybe more than one expert, as

Balan did. I need to hear more opinions from the experts.

Thanks for pointing out your thoughtful concerns. I take them to heart.

On Monday, July 27, 2009, at 07:52 AM, karlamonyc wrote:

>  

> ,

>

> Good points. What is used to treat matters too, but When may determine

> What's most feasible to use and likely to be optimally effective.

>

> It may be, for example, that studies will show that the degree of

> tumor burden predicts / determines the potential to achieve a durable

> complete response in CLL, or that treating earlier with Revlimid is

> more effective than treating with Revlmid when it's advanced.

>

> My concern is that waiting as-long-as-possible to treat might not

> always be the best judgment. But, of course, my expectation doesn't

> count, we need studies to guide us on these questions.

>

> Admittedly, I have more familiarity with follicular lymphoma, and have

> seen evidence suggesting the importance of timing: The RESORT study

> testing Rituxan first line in FL with low tumor burden suggests this

> expectation is shared among investigators. And we have seen better CR

> rates with RIT and CHOP-R in study participants with lower tumor

> burden.

>

> If this matters less for CLL I can't say, so I pose it as a question.

>

> Karl

>

>

> >

> > >  

> > > Just a comment that timing of treatment seems an important question

> > > and guidance is needed -- assuming instinct about its importance is

> > > confirmed by evidence and basic knowledge - that waiting too long

> can

> > > matter, as might treating too early.

> > >

> > > With such guidance patients will be given an important role in

> > > clinical decision making. My concern is that some may be waiting

> too

> > > long too often, as feels he might have.

> > >

> > > Anyhow, it would be nice to get more input on this question from

> > > experts in various ed forum ... and perhaps how we might begin to

> > > account for the impact of timing of therapy on outcomes in clinical

> > > trials.

> > >

> > > Karl

> > >

> > >

> >

>

>

[Guest guest]

Thanks, Chonette, for sharing your own experience. I've followed your

progress with great admiration for your desire to chart your own

course. It seems to be working for you. I hope I can do the same. We

all have such different " courses. " So much is unknown that we can only

find out all we can, then do what we feel in our gut is the best for us.

Good luck and best thoughts for your continued road forward,

On Monday, July 27, 2009, at 03:31 AM, Chonette wrote:

>  

> ,

> You have said it very clearly on your post " what to treat with (when

> the " time comes " ) " .

> I am an example of not wanting treatment, but it was mainly I did not

> want the treatments offered or suggested. I was and still  are a very

> stubborn person, following my own instict, however I do listen to the

> experts and have tried to learn and understand the different

> treatments available.

> I waited to treat until I got what I thought it was best for me, I had

> the least posible toxic damage with treatments in my body and kept a

> very healthy life even during the time I had marrow failure.

> Having accepted the fact that non of the treatments worked for me and

> accepting the posibility of palliative treatment after 6 years of

> living with CLL, I was then offered to go through the transplant route

> on the basis that even at my age I was a very healthy person, of

> course apart from CLL.

> Like , I do not worry about my CLL, although I am always very well

> informed. Now that the tests showed there is no CLL in my body, I find

> hard to sink in, after so many years of discusing what to do after

> each treatment failed to give me a complete remission, I was sort of

> expecting the same thing with a SCT, I know 4 months is early days,

> but being seen at the clinics every 2 weeks is just amazing freedom.

> regards

> Chonette (UK)

> Chonette

> dx 10-02 (aged 57)

> unmutated, CD38 19%, ZAP70 9%,

> 2004 Prednisolone 8 weeks 50 mg. a day,

> 2005 Prednisolone 8 weeks 50 mg.a day, followed by

> low doses chlorambucil (2 mg.),

> 2006 Rituximab and low doses chlorambucil (6 mg. a day 14 days on 14

> days

> off) 6 rounds,

> 2007 Low doses Rituximab,

> 2007 Fluradabine Lite, HDMP,. Rituximab 200 mg. monthly (5 rounds)

> Partial Remission, multiple pea size nodes on neck,

> Started 16 week Campath/HDMP Protocol in June 2008, to follow SCT

> CMV activation plus two other infections end week 8th of Campath.

> Hopitalised for 4 weeks. 2 months gap to allow body to recover

> Dec 2008/Jan 2009 - HDMP to reduce nodes, bone marrow clean - no more

> Campath needed

> Admited to The Royal Free Hospital 15th March, SCT March 24th

> following Prof. McKinnon's protocol.

> Feeling well 4 months post transplant with good engraftment

>  

>  

>

>

[Guest guest]

Hi I think your question is very important and that it would also make an

excellent introduction to an expert session on this question.

My only recommendation is that you consult at least one CLL expert who can help

you to decide on the timing and type of therapy (including investigational)...

who will have the training and first-hand information about your clinical status

.... needed to provide reliable guidance.

However, I wouldn't expect certainty about the recommendations, so ask for the

rationale, not just the recommended protocol and timing.

Your description of symptoms suggests to me, a layperson, that treatment of some

kind is indicated.

All the best,

Karl