CLL

[Guest guest]

I too have had many bouts of upper respiratory infections. Currently I have had bronchitus and possibly now pneumonia for the past 5 weeks. I am a teacher and all my doctors feel my job is compromising my immune system. I love what I do and to think I have to give it up is really a hard thing for me. I wanted to go out on my terms. CLL is running my life and I am desperately trying to take it back.

Helen Access 350+ FREE radio stations anytime from anywhere on the web. Get the Radio Toolbar!

[Guest guest]

Joyann,

The best thing you can do now is educate yourself about CLL. One of the best places is CCLTOPICS.ORG. If you go to www.clltopics.org on the right side of the screen is a column titled " Newly Diagnosed " the articles there will be very helpful.

 

You will find the article very educational. This group is very helpful and informative as well and has several article and recorded messages on it's web page.

 

Dave Tipton

age 64,  dxed 2001, tx Nov 2004 with FCR, currently out of remission and considering next treatment 

On Fri, May 1, 2009 at 11:38 PM, joyann12342000 <joyann12342000@...> wrote:

Hello all, my name is joy and I was diagnosed with cll april 4, 2007 it was the day before my mom died of lung and heart failure. I was first diagnosed from a routine work physical my wbc was 35,000 at the time. For the last few years it has bounced back and forth between 20,000 to 35,000. I have had some lymph node swelling and some itching. Upper respiratory infections seem to be getting more frequent. But my hematologist thinks that it is still in the wait and watch stage. Iam an LPN and still working in a nursing home. I should probably no more than I do about my disease but I dont and I guess I have come here in search of answer. Like should I still be doing what I do for a living. Most of the time I feel okay energy gets low sometimes but there again my doc says it not due to the CLL. Also sometimes I wonder if he is proactive enough. Am I doing the right thing by waiting? Sometimes I feel like I have a cancer that no one including my family sometimes recognizes. Anyway just searching.

Good health to all Joy

[Guest guest]

This was the best information I have gotten on CLL--many, many thanks .

-------------- Original message from Tipton <dcdtip@...>: --------------

Joyann,

The best thing you can do now is educate yourself about CLL. One of the best places is CCLTOPICS.ORG. If you go to www.clltopics.org on the right side of the screen is a column titled "Newly Diagnosed" the articles there will be very helpful.

You will find the article very educational. This group is very helpful and informative as well and has several article and recorded messages on it's web page.

Dave Tipton

age 64, dxed 2001, tx Nov 2004 with FCR, currently out of remission and considering next treatment

On Fri, May 1, 2009 at 11:38 PM, joyann12342000 <joyann12342000 > wrote:

Hello all, my name is joy and I was diagnosed with cll april 4, 2007 it was the day before my mom died of lung and heart failure. I was first diagnosed from a routine work physical my wbc was 35,000 at the time. For the last few years it has bounced back and forth between 20,000 to 35,000. I have had some lymph node swelling and some itching. Upper respiratory infections seem to be getting more frequent. But my hematologist thinks that it is still in the wait and watch stage. Iam an LPN and still working in a nursing home. I should probably no more than I do about my disease but I dont and I guess I have come here in search of answer. Like should I still be doing what I do for a living. Most of the time I feel okay energy gets low sometimes but there again my doc says it not due to the CLL. Also sometimes I wonder if he is proactive enough. Am I doing the right thing by waiting? Sometimes I feel like I have a cancer that no one including my family sometimes recognizes. Anyway just searching.

Good health to all Joy

[Guest guest]

Helen,

I've lived with CLL for 11 years and it sounds to me as if you're

feeling the fear about CLL we all have at times when we see our future

and it looks glum. The truth is CLL is a disease we mostly live with,

not die from, as GrannyBarb (who started the first CLL chatlist) used

to say. Right now, it's impinging on your life but the answer may not

be to quit teaching. Getting sick too much is one of the criteria

doctors use for recommending starting tx. I don't know if you're

weakening your immune system but you may be weakening your upper

respiratory areas—and your overall outlook and state of mind!

Treatment is an option that could allow you could keep your job. Many

CLLers work through chemo without difficulty; fludarabine/Rituxan, for

ex:, won't cause hair loss, nausea or great fatigue. Even if you

require a " stiffer " combo with more side-effects you could take a leave

of absence and return when you're better! Facing fears and taking

steps has always helped me when the CLL began to feel really

frightening. Eventually with your decision, one alternative would

emerge as just feeling right but waiting for this may not be the best

answer here. You can always discuss tx with your oncologist and then

make your choice.

-Ellen D.

Did you often get sick before CLL reared its head? Does it go with the

job? On May 2, 2009, at 12:43 PM, HKlein7300@... wrote:

>

>

> I too have had many bouts of upper respiratory infections.  Currently

> I have had bronchitus and possibly now pneumonia for the past 5

> weeks.  I am a teacher and all my doctors feel my job is compromising

> my immune system.  I love what I do and to think I have to give it up

> is really a hard thing for me.  I wanted to go out on my terms.  CLL

> is running my life and I am desperately trying to take it back.

> Helen

>

>

> Access 350+ FREE radio stations anytime from anywhere on the web. Get

> the Radio Toolbar!

>

[Guest guest]

Helen,

I understand completely your desperate desire to take control of

your life and not let it be controlled by CLL. I think we all feel that

at times, that our CLL or some other factor is turning our lives in a direction

we don’t want to go. I work with children also, though

out-of-doors, and I love that as well. I had to stop for a while during

and after treatment until my counts and immunoglobulin situation improved.

So for a while, I had to relent and let the CLL take that away from me for a

while. During that time, I thought a bit about what I might do if it

turned out I shouldn’t teach again afterwards. I was lucky and

recovered a fair immunity, it looks like so far, but I know that’s likely

to be challenged again.

Have you gotten a CLL specialist’s opinion yet regarding

your situation? It’s possible the specialist will advise the same

thing as your other doctors, in which case I’d say you can take control

by actively researching your treatment options and making your decision as to

how you want to approach treatment when it is advised as necessary. On

the other hand, you may hear something different that might give you some

encouragement.

I know that part of my sense of control over my life comes from

the fact that I try to stay aware and informed of my options. Sometimes

it just seems to be necessary to give something up in order to get something

back. I hope that, whatever you hear and do, you’ll be able to act

in a way that you will feel you have control.

Best wishes,

Karni

dx Nov. 2003, tx F/R 2008

in remission with low counts slowly getting back into normal

range

iron supplements for anemia and hgb up some -- hurray!

looking up but still some fatigue – some days are better

than others

[Guest guest]

Hi Helen -

It feels so debilitating to face this huge disease when you have a bad infection

- I feel for you!

It's hard to answer you because you don't say whether you have had treatment,

are in remission, or in watch and wait.

But it's not so much the kids' infections that compromise your immune system,

but it's your CLL-compromised immune system that makes you more vulnerable to

infection. That's like saying you get AIDs from donating blood. So the answer is

to get your CLL under control, which hopefully is an direction that you are

pursuing.

There is a teacher at my son's school with CLL who went on leave during

treatment, then returned and has been healthy.

As this swine flu pandemic is teaching the whole world, you can't hide from

germs 100%. The best thing you can do is get better from your current infection,

get the right treatment

for CLL, and live healthfully to keep your immune system as strong as possible.

Best of luck!

Marietta

>

> I too have had many bouts of upper respiratory infections. Currently I

> have had bronchitus and possibly now pneumonia for the past 5 weeks. I am a

> teacher and all my doctors feel my job is compromising my immune system. I

> love what I do and to think I have to give it up is really a hard thing

> for me. I wanted to go out on my terms. CLL is running my life and I am

> desperately trying to take it back.

> Helen

> **************Access 350+ FREE radio stations anytime from anywhere on the

> web. Get the Radio Toolbar!

> (http://toolbar.aol.com/aolradio/download.html?ncid=emlcntusdown00000003)

>

[Guest guest]

I too have had many bouts of upper

respiratory infections. Currently I have had bronchitus and possibly now

pneumonia for the past 5 weeks. I am a teacher and all my doctors feel my

job is compromising my immune system. I love what I do and to think I

have to give it up is really a hard thing for me. I wanted to go out on

my terms. CLL is running my life and I am desperately trying to take it

back.

Helen

Access

350+ FREE radio stations anytime from anywhere on the web. Get

the Radio Toolbar!

[Guest guest]

It's amazing that all the doctors say the same thing. Don't worry; you will die

with it, not of it; this is no big deal; any symptom you may be having now is

in your head because you are in stage 0; this is an old person's disease; don't

worry about the cd-38 test changing because that never happens; and when you

need treatment it will be so mild you won't have to worry about it. Do you

think that is the standard that they are all taught to say? Because after

reading CLL Topics, I realize that it is alot more complicated than that. I

think it would be better if they say that they have a xx% chance of being this

kind of outcome and that they will be watching for various things. I also don't

know what I am supposed to look for, but CLL topics does give a clue - the

extreme tiredness, night sweats, etc. The right side of my face is feeling kind

of tingly and I don't know if it is completely unrelated or a lymph node

pressing on a nerve. I think too that it would be nice if they had a nurse on

call who is a specialist in CLL so you can ask more questions because it seems

that the doctors are too busy. Plus it seems that there are so many opinions

even amongst the experts about the different course of action to take when you

get treated.

But like others, I have adjusted to this concept and realize that we can all

take the steps to keep ourselves healthy, research as much as possible, get

second opinions and perhaps choose doctors that specialize more in blood

diseases rather than the all-purpose oncologist and leave it at that. However

an all-purpose oncologist may just handle it just fine and will look at all the

various markers and ask you want symptoms if any you have and really be able to

keep abreast of the matter - especially in the beginning stages.

Ruth

>

>

>

>

> Welcome to the CLL world of " Watch and Wait " or what some have described as

" Watch and Worry " . My family doctor told me not to worry because even if it

does start to cause a problem you can just take a pill and everything will be

fine. Since receiving my diagnosis a few months ago I have poured my attention

into learning everything I can about this disease. This support group is

fantastic and so informative. I can actually now sleep at night. What I now know

is that everyone is different go to CLLtopics.org and read through the symptoms

so that you will be on top of any possible changes.

>

>

> CLL

>

>

>

>

>

>

>

>

> I was diagnosed with CLL almost two years ago. My oncologist thinks that the

wait and see method is the best approach for me as I am in zero stage. I have

had a bone marrow test to comfirm the disease.

>

> My question is this. I don't really know what to expect from this disease. I

now see my oncologist every four months with bloodwork done before the visit.

>

> What should I look for in relation to this disease. I've been told that this

is incurable. If this is so, what am I expected to do. Sitting and waiting for

the other shoe to drop seems strange to me.

>

> Any advice. What is the usually prognosis with this disease? My doctor said

something else would probably kill me before Cll does. I am 65 years old.

>

[Guest guest]

Dr. Byrd is at Ohio State in Columbus Ohio, and

Dr. Ian Flinn is at Cannon Research Institute in Nashville Tenn.

See this webpage for contact info:

http://cll.acor.org/DRdoctors.htmlWayne McPhersonCape Girardeau, MO.69, CLLdx 9/99, stage 1, DAT(Coombs)negtrisomy 12, CD38+, unmutated, ZAP70+WBC 113K when MyVax began 3/1/0711q del appeared sometime between '06 & '08WBC 244K when Revlimid began 10/15/08WBC 11K now

From: joyann12342000 <joyann12342000@...>Subject: CLL Date: Sunday, July 26, 2009, 5:49 PM

Hi everyone, I was wondering if anyone could recommend a good oncologist in the northern ky area. I Would like to find a different Doctor. Also I just wanted to let you all know that I have found this group very informative and thanks to all. Joy

[Guest guest]

For those who are new here. I think sometimes, we forget them.

I would like to share a couple of things as I don't think that always happens.

First, of course, Our Cancer Doctor is our primary source of indformation.

I don't believe they are are always honest with us. I was told in late 2006 that

I needed additional treatment. I looked at the records he was looking at and

determined that he was a crackpot. Yet he is is currently a respected physician

at Jewish,. Another so called expert Blinder is just as in capable.

[Guest guest]

Joy

My first advice to anyone who is not comfortable with their

doctor of any type is move on. In the case of my first

oncologist I should have done it sooner. One of the best in

the country is Dr. Byrd in Ohio.

The stomach issues don't sound like something directly

related to your CLL, but you'd want to check that out with a

GP or gastroenterologist as well as with your oncologist.

One frustration with CLL is that there are so many

variations that I'm not sure there is a norm. At the same

time it's easy to assume that everything is related to it

which isn't the case. If you are working in a nursing home

you certainly would want to rule out Cdiff.

Best of luck in finding an answer and in finding the right

hematologist. I went through 5 before I did, but it was

worth it.

Pat

On 3/6/11, joy <joyann12342000@...> wrote:

> Iam 45 years old have been diagnosed with CLL since 2007. I am in watch and

> wait WBC typically runs around 38000. I have a lot of fatigue and was told

> by my hematologist that it was not due to the CLL. I have recently read that

> may not be true. I also recently have had some decrease in appetite, nausea

> and diarrhea/constipation. In November I had a colonoscopy done it didnt

> really show anything but two weeks later I had a CT of the abdomen and it

> showed Diverticulosis without diverticulitis. But as I said over the last

> two weeks I have been having some problems with my stomach. Iam an LPN in a

> nursing home and there has been a stomch bug going around but could it be

> possible that I would get it back three times in three weeks and the last

> time being the worse I had to miss two days of work and have been sick for

> about 5 days this time not able to eat much if any. Also not sure that Iam

> confident in my oncologist and was wondering if anyone knew of a CLL

> specialist in my area Northern Ky close to Cincinnati OH. Thanks so much for

> your help Joy

>

>

[Guest guest]

Columbus, Ohio ( Byrd) and Nashville, TN (Ian Flinn) are the two closest.

>

> Iam 45 years old have been diagnosed with CLL since 2007. I am in watch and

wait WBC typically runs around 38000. I have a lot of fatigue and was told by my

hematologist that it was not due to the CLL. I have recently read that may not

be true. I also recently have had some decrease in appetite, nausea and

diarrhea/constipation. In November I had a colonoscopy done it didnt really show

anything but two weeks later I had a CT of the abdomen and it showed

Diverticulosis without diverticulitis. But as I said over the last two weeks I

have been having some problems with my stomach. Iam an LPN in a nursing home and

there has been a stomch bug going around but could it be possible that I would

get it back three times in three weeks and the last time being the worse I had

to miss two days of work and have been sick for about 5 days this time not able

to eat much if any. Also not sure that Iam confident in my oncologist and was

wondering if anyone knew of a CLL specialist in my area Northern Ky close to

Cincinnati OH. Thanks so much for your help Joy

>

[Guest guest]

Agent Selectively Targets Malignant B Cells in Chronic Leukemia, Study ShowsScienceDaily (May 3, 2011) — A new experimental drug selectively kills the cancerous cells that cause chronic lymphocytic leukemia, according to a new study by researchers at the Ohio State University Comprehensive Cancer Center -- Arthur G. Cancer Hospital and J. Solove Research Institute (OSUCCC -- ).The study shows that the experimental agent PCI-32765 selectively kills the malignant B lymphocytes that cause chronic lymphocytic leukemia (CLL).The researchers say the findings, published online in the journal Blood, are important because current CLL therapies kill T lymphocytes along with the cancerous B lymphocytes.T lymphocytes and B lymphocytes make up the adaptive immune system. When CLL treatment destroys them both, patients become highly susceptible to life-threatening infections."A drug that kills malignant B lymphocytes and spares T lymphocytes could dramatically improve outcomes for CLL patients," says study leader Dr. C. Byrd, director, division of hematology and professor of medicine, of medicinal chemistry and of veterinary biosciences at the OSUCCC -- ."Our collective results indicate that PCI-32765 is an outstanding candidate for further development as a therapeutic for CLL," says study co-director Dr. Amy J. , assistant professor of hematology and medicinal chemistry, and a CLL researcher with the OSUCCC-.The research by Byrd, and a group of colleagues used CLL cells from ten patients. It had several key findings related to PCI-32765:The agent specifically targets an important signaling molecule called Bruton's tyrosine kinase, which is overexpressed in CLL cells and absent in T cells.The agent inhibits the proliferation of CLL cells in laboratory culture and promotes their death by self-destruction (apoptosis).It blocks survival signals from cells in the surrounding microenvironment, including soluble factors such as IL-6, IL-4, and TNF-a, and stromal-cell contact.Byrd is the D. Warren Brown Chair of Leukemia Research.Funding from The Leukemia and Lymphoma Society, the National Cancer Institute and The D. Warren Brown Foundation supported this work.Other researchers involved in this study were E. M. Herman, Amber L. Gordon, Hertlein, Asha Ramanunni, Xiaoli Zhang, Jaglowski, ph Flynn, and Kristie A. Blum of The Ohio State University; and ph J. Buggy and Ahmed Hamdy of Pharmacyclics, Inc.Financial disclosure: ph J. Buggy and Ahmed Hamdy are employees of Pharmacyclics, Inc. and both have financial interests in PCI-32765 development.Email or share this story:| MoreStory Source:The above story is reprinted (with editorial adaptations by ScienceDaily staff) from materials provided by Ohio State University Medical Center.Journal Reference:S. E. M. Herman, A. L. Gordon, E. Hertlein, A. Ramanunni, X. Zhang, S. Jaglowski, J. Flynn, J. , K. A. Blum, J. J. Buggy, A. Hamdy, A. J. , J. C. Byrd. Bruton's tyrosine kinase represents a promising therapeutic target for treatment of chronic lymphocytic leukemia and is effectively targeted by PCI-32765. Blood, 2011; DOI: 10.1182/blood-2011-01-328484

[Guest guest]

Thanks for that - sounds very positive! I'll pass it on.

cheers

Beverley

>

> Agent Selectively Targets Malignant B Cells in Chronic Leukemia, Study

> Shows

> ScienceDaily (May 3, 2011) — A new experimental drug selectively

> kills the cancerous cells that cause chronic lymphocytic leukemia,

> according to a new study by researchers at the Ohio State University

> Comprehensive Cancer Center -- Arthur G. Cancer Hospital and

> J. Solove Research Institute (OSUCCC -- ).

>