A message for newcomers and newbies

[Guest guest]

It has come to my attention that some folks, the not very experienced ones, the not very sick ones, the newly diagnosed ones, may be a bit intimidated by this discussion group.

This should not be so. The group is designed and intended to offer and share advice with CLLers at ALL levels. If you have just come on board, and you are troubled, do not be shy. Come on up and post your questions and concerns!!!

Lots of people are here with knowledge, only too glad to offer thoughts, advice, the benefit of earlier experiences, and to guide you in what you might expect, etc.

Yes, the group was originally designed to be a serious medical site. It still is, and we have Dr. Furman helping us with medical problems. We are not primarily designed to be a "hand holding" group. We focus on information, more than on support (although it is impossible to avoid the latter, take a look at how many people are cheering for Koffman's transplant effort!!).

However, the level of the medical information should not be intimidating, and should be applied at all levels, beginners, experienced people, people who are learning, and people who are very knowledgeable.

So, don't be afraid, let us hear from you!!

Best,

Gas prices getting you down? Search AOL Autos for fuel-efficient used cars.

[Guest guest]

I also want to echo 's message for newcomers. I've come a long way from the day I got an e-mail from JB50192 and sent one back saying, "Who are you?" I don't know how my name ended up on 's list, but am very grateful that it did.

I've learned that even the questions that seem possibly unrelated can actually be important, and the ones that have been answered before may not have been answered for a while and include people who have joined since as well as providing "refreshers" for those who have been on the list for a while. The answers also make more sense after one has lived with CLL for a while - much of the information bounces off of you when you're new and just looking for the basics.

I've also found some wonderful new friends who have an instant understanding of the whole CLL thing, so we don't have to go there. The give and take of support here is invaluable. In addition, it doesn't get any better than having Dr. Furman's input, whether it's to answer something that's been nagging you or to get additional input on major decisions.

I feel extremely lucky to be a part of the CIG family and pass the word on at every opportunity. Kudos to , the father of us all!!!

pat Kennedy**************Gas prices getting you down? Search AOL Autos for fuel-efficient used cars. (http://autos.aol.com/used?ncid=aolaut00050000000007)

[Guest guest]

Thanks for the encouragement to respond! I have a question about treatment. I was diagnosed with CLL about four years ago, but have probably had it about nine years. I started my first round of treatments about a year ago--PCR (Pentostatin, Cytoxon, and Rituxan). I have done great up until the last check in May. All labs are still in the normal range; however, the platelets had dropped significantly from 230 to 160. If they continue to drop, is there a treatment to bring the platelets back up? I thought I remembered a discussion recently about Rituxan being used for this. From reading the discussions of the different treatments over the past couple of years, I was pleased with the treatment my doctor used for my first round of treatments. I appreciate all the information discussed by this

group!

Any advice regarding treatment would be appreciated!

Carolyn Houston

Age 60

From: jb50192@... <jb50192@...>Subject: A message for newcomers and "newbies" Date: Thursday, June 19, 2008, 7:33 PM

It has come to my attention that some folks, the not very experienced ones, the not very sick ones, the newly diagnosed ones, may be a bit intimidated by this discussion group.

This should not be so. The group is designed and intended to offer and share advice with CLLers at ALL levels. If you have just come on board, and you are troubled, do not be shy. Come on up and post your questions and concerns!!!

Lots of people are here with knowledge, only too glad to offer thoughts, advice, the benefit of earlier experiences, and to guide you in what you might expect, etc.

Yes, the group was originally designed to be a serious medical site. It still is, and we have Dr. Furman helping us with medical problems. We are not primarily designed to be a "hand holding" group. We focus on information, more than on support (although it is impossible to avoid the latter, take a look at how many people are cheering for Koffman's transplant effort!!).

However, the level of the medical information should not be intimidating, and should be applied at all levels, beginners, experienced people, people who are learning, and people who are very knowledgeable.

So, don't be afraid, let us hear from you!!

Best,

Gas prices getting you down? Search AOL Autos for fuel-efficient used cars.

[Guest guest]

" If they continue to drop, is there a treatment to bring the platelets back up? "

****************************************************

Dear Carolyn,

My husband, , has been taking cyclosporin for treatment of AIHA, which has

been caused by his over-achieving spleen. The treatment is helping, and the

icing on the cake is that his platelet count, which hovers just above and below

the low end of normal, has taken a sharp turn in the right direction.

Warm wishes,

Jan

[Guest guest]

Thank you for the encouragement to join in. I was diagnosed in Sept.

2007 with all the good markers at the age of 44. My only symptom is

fatigue and I have enlarged lymph nodes in my neck, under my arm and

under my chin.

Right now my concern is that I have been having a low grade fever for

around three weeks now. Have any of you experienced this before? Is

this something that I should worry about?

I don't see my local hem/onc until July and my specialist at MD in

October so I thought I'd ask the group.

Thanks,

Michele

>

> It has come to my attention that some folks, the not very

experienced ones,

> the not very sick ones, the newly diagnosed ones, may be a bit

intimidated by

> this discussion group.

>

> This should not be so. The group is designed and intended to offer

and share

> advice with CLLers at ALL levels. If you have just come on board,

and you

> are troubled, do not be shy. Come on up and post your questions

and concerns!!!

>

> Lots of people are here with knowledge, only too glad to offer

thoughts,

> advice, the benefit of earlier experiences, and to guide you in

what you might

> expect, etc.

>

> Yes, the group was originally designed to be a serious medical

site. It

> still is, and we have Dr. Furman helping us with medical problems.

We are not

> primarily designed to be a " hand holding " group. We focus on

information, more

> than on support (although it is impossible to avoid the latter,

take a look at

> how many people are cheering for Koffman's transplant

effort!!).

>

> However, the level of the medical information should not be

intimidating,

> and should be applied at all levels, beginners, experienced people,

people who

> are learning, and people who are very knowledgeable.

>

> So, don't be afraid, let us hear from you!!

>

> Best,

>

>

>

>

>

> **************Gas prices getting you down? Search AOL Autos for

> fuel-efficient used cars. (http://autos.aol.com/used?

ncid=aolaut00050000000007)

>

[Guest guest]

Hi, I'm one of the newcomers who've been lurking in the background

reading the site every day, and I've learned an incredible amount

that isn't covered on other websites. It's taken me awhile to get up

to speed on the drugs and technical terms but I'm getting there. I'm

49 and was diagnosed in February and my first oncologist never seemed

to be able to get any of the marker tests done(FISH, IvGH etc) so I

don't really know if my markers are good or bad. I recently moved

from that oncologist to the University of Michigan Cancer Center and

am much happier with my new doctor. Although I'm seemingly strong and

healthy with slightly swollen lymph nodes being my only symptom, One

thing that he mentioned that I have not seen discussed in this or

other online sites was the amount of my bone marrow taken up by the

cancer cells. He expressed some concern that according to the bone

marrow biopsy, my bone marrow was over 70% full. I haven't seen this

correlated anywhere or mentioned as a measurement or severity. My RBC

and platelet levels are good. Has anyone else else had any

experience with this type of measurement?

Thanks,

Tim

[Guest guest]

Tim,

I have had 5 Bone marrow Biopsies during my CLL life, the first one after diagnosed I had 57% infiltration with diffuse cells.

To make the story short, I had marrow failure, heavily infiltrated, 60% infiltration, and the last one in December for the first time I had nodular cells, which I have been told is best than the diffuse infiltration.

I had another BMB 4 weeks ago, but I have not asked for the results, this was a BMB done as a test line before starting my actual treatment.

I like to add that non of the BMB I had were painful, all done under local anaesthetic, I think the doctors that did them were very skilful.

I was told years ago that in some people the lymphocytes cells show on the periferical blood and have very high blood counts, and in others like myself, who hardly ever have high blood counts, it shows on the lymph nodes and the marrow.

During the time my marrow was heavily infiltrated, I did not produce platelets or haemoglobin so at that time I started treatment again.

In my early years when the marrow was failing I was not sure what I wanted to do so I managed to go through the year with a very low doses of chlorambucil, until I found out who would be prepare to give me a moderated treatment and have all the test done to get an idea of which type of CLL I had.

Those days seem such a long time ago, that are almost forgotten in my mind.

There are provably some posts related to bone marrow on the archives.

best regards

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 bylow 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,feeling wellJune 2008 Campath/HDMP protocol and SCT to follow