Re: Wait and see?

[Guest guest]

Wait and see (or worry) is the norm for newly diagnosed CLL

patients. That also means you have time to come up to speed

about this disease before you have to make any crucial

decisions. I suggest the following link for a great

introduction: http://clltopics.org/Primer.htm

Mod's note from :

You can download " Understanding CLL " by clicking on the

red book at the bottom of the left column on this page:

http://tinyurl.com/2l8wya or

http://www.cllinfogroup.org/site/Home__Chronic_Lymphocytic_Leukemia_Information_\

Group.htm

or call 1-800-500-9976 to get a free copy mailed to you.

[Guest guest]

Dear T+H,

The short answer is that you have nothing imminent to worry

about. The WBC and ALC are both low for CLL, and besides as

you will learn, the mantra is treat the patient, not the

counts. And even with the counts, it is the trends that

matter, not the numbers themselves.

The MCH (mean cell hemaglobin) is also usually meaningless

unless the MCV (mean cell volume) and the Hgb are also

abnormal. Just follow it. It is usually a trivial issue.

This website /

plus http://CLLtopics.org and http://cllcanada.ca/

are great places to learn about this chronic disease.

Your doc is right, though it is a hard lesson, to do nothing

with an early cancer diagnosis while you watch it progress?

Truth is that some lucky CLLers never need treatment, and

there is no evidence that early treatment helps those who

do. Studies are re-investigating that now using the latest

meds in high risk patients.

My advice? Become an expert and hire a true CLL expert as

your doctor (not a community oncologist).

Stay strong.

We are all in this together

, 59 yr family doc & father of 4, dx 9/05 del 11q

unmutated, CD38+, ITP 9/06 failed steroids, IVIG , Rituxan

and splenectomy controlled w cyclosporin A & Rituxan combo.

RIC MUD HSCT July 1/08 was CR w BMB MRD neg. - lost graft

w growing nodes at 6 months, BM involvement and ITP again at

13 months, now controlled w IVIG cyclosporin and recent

course of R, mild anemia see http://bkoffman.blogspot.com/

[Guest guest]

just adding a few notes here.

Diane's references are a great place to start. Being

informed is your best bet. this is a disease that begs for

patient involvement, precisely since there is no one

formula, no one 'right' method of approaching it. A patient

who doesn't become familiar with all views may be doing

himself a disservice. And as said, get yourself to a

CLL specialist since you would be well advised to get that

level of diagnosis so that you know whether you are one who

may need or want treatment sooner, or not. In most cases, a

path of benign ignoring it.... or watching and worrying is

best....But that can't be confused with go home and forget

you have it entirely. things don't happen in the same

order, or level of intensity in all patients, and to even

know if this or that MAY be connected, one needs to be

informed.

During this time of waiting some things will or should

become more important, such as careful skin screening for

skin cancer, in fact care of your teeth, and control of any

other medical issues you may have now. heart, kidney, etc.

all can be involved at any time, and for the best outcomes

should be in peak working order especially if treatment is

advised.

Another good site with masses of CLL information is

http://www.cllcanada.ca has done an amazing job of

amassing all manner of quality and up to date information.

He posts frequently on this site.

As for 'no evidence' of benefit for early treatment, this is

mostly true unless one has high risk markers. It might also

be said that 'early treatment' has not been studied much so

there's not any 'evidence', but many with worse markers will

swear that 'earlier' treatment in response to poorer markers

has helped them. http://www.ncbi.nlm.nih.gov/pubmed/18759253

this is a Mayo study that did show some benefit of treating

patients early, or earlier if they have certain combinations

of markers. To know if you are one of those patients you'd

need to get some of the newer genetic testing done, again, a

CLL specialist. Tho not everyone adopts this approach, and

if you wanted it you may have to fight for it... to do that

you need to become informed.

While most studies you will find have been done on later

stage patients, there have been many patients who have been

helped to stay stable for long periods using treatments such

as Rituxan single agent at an earlier stage. (higher risk

patients). While these methods may have shown no dramatic

increase in overall survival, asking the patients who have

done this one may get an entirely different view point....

they feel human again.

As you begin to read you will see that there is far more

than wbc and alc to knowing, or even guessing how your cll

is doing.

Start reading, and begin now to chart your blood tests,

using the chart forms on http://www.clltopics.org this will

allow you to see trends, rather than isolated counts.

Since lab error, dehydration and even another illness

entirely can throw those numbers out of whack... if you

chart them you'll be able to find the outlyers more easily

and deal with them appropriately.

wishing you all the best, beth fillman

[Guest guest]

Thanks for all this information Beth. Is there an up to date

list of CLL specialists for each state that you know of?

Tom

[Guest guest]

CLL Docs

http://cll.acor.org/DRdoctors.html

>

> Thanks for all this information Beth. Is there an up to date

> list of CLL specialists for each state that you know of?

>

> Tom

[Guest guest]

I don't think you should hestitate due to fear of skin sores unless your child

has had previous skin issues..... Normally skin sores aren't really an issue.

What is the degree of curvature? I'd monitor very closely.

T

Sent from my iPhone

On Mar 20, 2012, at 3:51 PM, " delrose09 " <steelersfamily08@...> wrote:

I was kicking myself for not listening to all of you when the doc said " wait and

see. " We waited until was 12 months old and there was no curve change, but

the doc offered a prescription for a brace at that time.

Today we finally got an opinion from a Mehta doc at Shriner's. And again, we

were told " wait and see. " That's unusual, right? is 13 months old but is

showing signs that he may get better or may get worse.

I would jump right into casting if I weren't so afraid of skin sores on my

fair-skinned baby!

Any advice on how we would know if things were going to resolve without

intervention?

Thanks,

Delinda

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[Guest guest]

Did the docs measure lil s RVAD? HRH From: infantile scoliosis treatment [mailto:infantile scoliosis treatment ] On Behalf Of delrose09Sent: Tuesday, March 20, 2012 2:51 PMinfantile scoliosis treatment Subject: Wait and see? I was kicking myself for not listening to all of you when the doc said " wait and see. " We waited until was 12 months old and there was no curve change, but the doc offered a prescription for a brace at that time.Today we finally got an opinion from a Mehta doc at Shriner's. And again, we were told " wait and see. " That's unusual, right? is 13 months old but is showing signs that he may get better or may get worse. I would jump right into casting if I weren't so afraid of skin sores on my fair-skinned baby!Any advice on how we would know if things were going to resolve without intervention?Thanks,Delinda

[Guest guest]

And~ whats your intuition telling you? Can you see the curve getting worse? Weekly photos can be super helpful in showing progression and/or regression.HRH From: infantile scoliosis treatment [mailto:infantile scoliosis treatment ] On Behalf Of delrose09Sent: Tuesday, March 20, 2012 2:51 PMinfantile scoliosis treatment Subject: Wait and see? I was kicking myself for not listening to all of you when the doc said " wait and see. " We waited until was 12 months old and there was no curve change, but the doc offered a prescription for a brace at that time.Today we finally got an opinion from a Mehta doc at Shriner's. And again, we were told " wait and see. " That's unusual, right? is 13 months old but is showing signs that he may get better or may get worse. I would jump right into casting if I weren't so afraid of skin sores on my fair-skinned baby!Any advice on how we would know if things were going to resolve without intervention?Thanks,Delinda

[Guest guest]

2nd, 3rd and 18th opinions can never hurt. I agree…HRH From: infantile scoliosis treatment [mailto:infantile scoliosis treatment ] On Behalf Of rachelmjacobsSent: Tuesday, March 20, 2012 7:19 PMinfantile scoliosis treatment Subject: Re: Wait and see? I agree as well when it comes to the concern over being fair skinned. My 6 month old was casted last month at 5 1/2 months for the first time. Unlike myself, husband and my other children she is very fair skinned. Reddish hair and blue eyes as well. Ask yourself this- what does your gut tell you? For my Ella my gut said to find the best doc I could and push for a cast. Her RVAD was only a 10, but she's casted. If you're concerned by what you're told, absolutely get a second opinion. You'll never kick yourself for double checking. You'll kick yourself by not.Sorry I'm not more help.Good luck!> > I was kicking myself for not listening to all of you when the doc said " wait and see. " We waited until was 12 months old and there was no curve change, but the doc offered a prescription for a brace at that time.> > Today we finally got an opinion from a Mehta doc at Shriner's. And again, we were told " wait and see. " That's unusual, right? is 13 months old but is showing signs that he may get better or may get worse. > > I would jump right into casting if I weren't so afraid of skin sores on my fair-skinned baby!> > Any advice on how we would know if things were going to resolve without intervention?> > Thanks,> > Delinda > > > > ------------------------------------> >