Just diagnosed

[Guest guest]

I use the hand sanitizers ...cant do anymore harm to me than whats already been

done ...

Love And Respect....Donna

" Rest In Peace Skipper " 6-29-62/1-14-09

" I will love you always "

From: angeliquekeeler <angelique2230@ hotmail.com>

Subject: Re: Just Diagnosed

Hepatitis Csupportgr oupgroups (DOT) com

Date: Wednesday, June 17, 2009, 10:46 AM

>

> From: emily <emily_sweethang@ sbcglobal. net>

> Subject: Re: Just Diagnosed

> Hepatitis Csupportgr oupgroups (DOT) com

> Date: Tuesday, June 16, 2009, 12:47 PM

>

> Nilda,

>

> You got it. your right on track. support and reaching out is hard but it

works. Big hugs girl!!

>

>

>

> Just Diagnosed

>

> Hello

>

> My name is Donna and I am 49 yrs old. I was in the hospital last week for

chest pains... My heart was fine but diagnosed with Hep C, This has got me lost

right now... Im feeling like most..depressed and not knowing what will happen in

the future....

>

>

[Guest guest]

Vicki,Welcome to the group. knows more about our disease than most specialist so follow his recommendations and then ask lots of questions. I am 51 and just found out in March of 09. The initial shock is terrible. My wife and I cried and I was in such shock that I didn't even want to talk about it. As the weeks passed so did the feeling of hopelessness. I attribute this to my friends in the group and the wonderful information provided by Dr. Furman. This disease hits all of us differently. Some of us have multiple symptoms and have undergone multiple procedures, while others have remained asymptomatic. I think this disease was best described by one of my friends as an impending storm off on the horizon. You can see the dark clouds and thunder but you have no idea when it will reach you. For some of us it may be never and for others it is already beginning to rain. Please allow us to help Just diagnosed

Hi!

My 53 year old husband was just diagnosed yesterday with CLL. I have done some research online, but thought I would reach out to people instead of just reading the statistics. We see a blood specialist next week. The diagnosing doctor said "it's not a big deal. No need to worry". But, I am. I have so many questions and fears. I welcome all feedback.

THANK YOU!!

[Guest guest]

Vicki, My husband is also 53 and was just diagnosed in Aug. He is stage 1 and

we were in a panic when we found out. This is a good group and they help in

lots of ways. I still have lots of question but this group is great in getting

answers to you. Do you homework on his cll because it is better to be informed.

Good luck Debbie

>

> Hi!

> My 53 year old husband was just diagnosed yesterday with CLL. I have done some

research online, but thought I would reach out to people instead of just reading

the statistics. We see a blood specialist next week. The diagnosing doctor said

" it's not a big deal. No need to worry " . But, I am. I have so many questions and

fears. I welcome all feedback.

> THANK YOU!!

>

[Guest guest]

Sane - C+R is used, but these days there are better ways to go -

In a message dated 10/28/2009 1:20:31 P.M. Eastern Daylight Time, saneshchawla@... writes:

hi

you are right ,i have also never heard of combination of rituxan and chlorambucil for cll treatment ,although i read somewhere,about 4 months back, that it is being proposed for trials,friend i would advise you to take second opinion on this

sane

From: JAMKL4@... <JAMKL4@...>Subject: Re: Re: Just diagnosed Date: Wednesday, October 28, 2009, 10:02 PM

Hi:

I was diagnosed with CLL in Sept 07. I am 58 years old.My hemotologist said to watch and wait. I dontinue to see him every three months and the last time I saw him he said that I should start a combination of rituxan and chlorambucil. Can anyone tell me how this affects you and if I should get a second opinion. He stated that this helped alot of his patients.

I have night sweats sometimes and am a bit tired but still work everyday.

I love this site and am getting many good answers but havent heard anything about chlorambucil.

thanks

judi

scottsdale, az

Re: Just diagnosed

Vicki, My husband is also 53 and was just diagnosed in Aug. He is stage 1 and we were in a panic when we found out. This is a good group and they help in lots of ways. I still have lots of question but this group is great in getting answers to you. Do you homework on his cll because it is better to be informed. Good luck Debbie>> Hi! > My 53 year old husband was just diagnosed yesterday with CLL. I have done some research online, but thought I would reach out to people instead of just reading the statistics. We see a blood specialist next week. The diagnosing doctor said "it's not a big deal. No need to worry". But, I am. I have so many questions and fears. I welcome all feedback. > THANK YOU!!>

[Guest guest]

Hi:

I was diagnosed with CLL in Sept 07. I am 58 years old.My hemotologist said to watch and wait. I dontinue to see him every three months and the last time I saw him he said that I should start a combination of rituxan and chlorambucil. Can anyone tell me how this affects you and if I should get a second opinion. He stated that this helped alot of his patients.

I have night sweats sometimes and am a bit tired but still work everyday.

I love this site and am getting many good answers but havent heard anything about chlorambucil.

thanks

judi

scottsdale, az

Re: Just diagnosed

Vicki, My husband is also 53 and was just diagnosed in Aug. He is stage 1 and we were in a panic when we found out. This is a good group and they help in lots of ways. I still have lots of question but this group is great in getting answers to you. Do you homework on his cll because it is better to be informed. Good luck Debbie

>

> Hi!

> My 53 year old husband was just diagnosed yesterday with CLL. I have done some research online, but thought I would reach out to people instead of just reading the statistics. We see a blood specialist next week. The diagnosing doctor said "it's not a big deal. No need to worry". But, I am. I have so many questions and fears. I welcome all feedback.

> THANK YOU!!

>

[Guest guest]

hi

you are right ,i have also never heard of combination of rituxan and chlorambucil for cll treatment ,although i read somewhere,about 4 months back, that it is being proposed for trials,friend i would advise you to take second opinion on this

sane

From: JAMKL4@... <JAMKL4@...>Subject: Re: Re: Just diagnosed Date: Wednesday, October 28, 2009, 10:02 PM

Hi:

I was diagnosed with CLL in Sept 07. I am 58 years old.My hemotologist said to watch and wait. I dontinue to see him every three months and the last time I saw him he said that I should start a combination of rituxan and chlorambucil. Can anyone tell me how this affects you and if I should get a second opinion. He stated that this helped alot of his patients.

I have night sweats sometimes and am a bit tired but still work everyday.

I love this site and am getting many good answers but havent heard anything about chlorambucil.

thanks

judi

scottsdale, az

Re: Just diagnosed

Vicki, My husband is also 53 and was just diagnosed in Aug. He is stage 1 and we were in a panic when we found out. This is a good group and they help in lots of ways. I still have lots of question but this group is great in getting answers to you. Do you homework on his cll because it is better to be informed. Good luck Debbie>> Hi! > My 53 year old husband was just diagnosed yesterday with CLL. I have done some research online, but thought I would reach out to people instead of just reading the statistics. We see a blood specialist next week. The diagnosing doctor said "it's not a big deal. No need to worry". But, I am. I have so many questions and fears. I welcome all feedback.

> THANK YOU!!>

[Guest guest]

Hi,

I was diagnosed with CLL/SLL six years ago and I was treated with both Rituxan and chlorambucil. I had six sessions of chlorambucil and four of Rituxan. At the time of my diagnosis I had 40% involvement in my bone marrow. After treatment there was no sign of the disease anywhere including the bone marrow. I did not show symptoms again for three years so I feel it was a good treatment. I am not in the wait and watch but getting closer to needing treatment again. I am hoping to have the same treatment as last time. I tolerated both the chemo and the rituxan very well with no real side effects.

Hope this is helpful.

Edythe

, BC, Canada

Re: Just diagnosed

Vicki, My husband is also 53 and was just diagnosed in Aug. He is stage 1 and we were in a panic when we found out. This is a good group and they help in lots of ways. I still have lots of question but this group is great in getting answers to you. Do you homework on his cll because it is better to be informed. Good luck Debbie>> Hi! > My 53 year old husband was just diagnosed yesterday with CLL. I have done some research online, but thought I would reach out to people instead of just reading the statistics. We see a blood specialist next week. The diagnosing doctor said "it's not a big deal. No need to worry". But, I am. I have so many questions and fears. I welcome all feedback. > THANK YOU!!>

[Guest guest]

Judi,From a 2000 article in the New England Journal of Medicine. http://content.nejm.org/cgi/content/full/343/24/1750Fludarabine Compared with Chlorambucil as Primary Therapy for Chronic Lymphocytic LeukemiaKanti R. Rai, M.B., B.S., Bercedis L. , Ph.D., Frederick R.

Appelbaum, M.D., Kolitz, M.D., ce Elias, M.D., Lois

Shepherd, M.D., Hines, M.D., A. Threatte, M.D., A.

Larson, M.D., Bruce D. Cheson, M.D., and A. Schiffer, M.D. "Conclusions: When used as the initial treatment for chronic lymphocytic leukemia, fludarabine yields higher response rates and a longer duration of remission and progression-free survival than chlorambucil; overall survival is not enhanced."This might make a very good talking point between you and your doctor. For ex: does the addition of Rituxan change the picture? If so, how? This talk should come right after you ask him why he thinks you should start tx now (sweating and fatigue, if those are your only symptoms, are called "B" symptoms and are usually not enough of a reason to treat).Ellen D.On Oct 28, 2009, at 12:59 PM, <saneshchawla@...> <saneshchawla@...> wrote:

hi

you are right ,i have also never heard of combination of rituxan and chlorambucil for cll treatment ,although i read somewhere,about 4 months back, that it is being proposed for trials,friend i would advise you to take second opinion on this

sane

From: JAMKL4@... <JAMKL4@...>Subject: Re: Re: Just diagnosed Date: Wednesday, October 28, 2009, 10:02 PM

Hi:

I was diagnosed with CLL in Sept 07. I am 58 years old.My hemotologist said to watch and wait. I dontinue to see him every three months and the last time I saw him he said that I should start a combination of rituxan and chlorambucil. Can anyone tell me how this affects you and if I should get a second opinion. He stated that this helped alot of his patients.

I have night sweats sometimes and am a bit tired but still work everyday.

I love this site and am getting many good answers but havent heard anything about chlorambucil.

thanks

judi

scottsdale, az

Re: Just diagnosed

Vicki, My husband is also 53 and was just diagnosed in Aug. He is stage 1 and we were in a panic when we found out. This is a good group and they help in lots of ways. I still have lots of question but this group is great in getting answers to you. Do you homework on his cll because it is better to be informed. Good luck Debbie>> Hi! > My 53 year old husband was just diagnosed yesterday with CLL. I have done some research online, but thought I would reach out to people instead of just reading the statistics. We see a blood specialist next week. The diagnosing doctor said "it's not a big deal. No need to worry". But, I am. I have so many questions and fears. I welcome all feedback.

> THANK YOU!!>

[Guest guest]

Hello Ellen:

I also have low antibodies, below 300.

judi

Re: Just diagnosed

Vicki, My husband is also 53 and was just diagnosed in Aug. He is stage 1 and we were in a panic when we found out. This is a good group and they help in lots of ways. I still have lots of question but this group is great in getting answers to you. Do you homework on his cll because it is better to be informed. Good luck Debbie

>

> Hi!

> My 53 year old husband was just diagnosed yesterday with CLL. I have done some research online, but thought I would reach out to people instead of just reading the statistics. We see a blood specialist next week. The diagnosing doctor said "it's not a big deal. No need to worry". But, I am. I have so many questions and fears. I welcome all feedback.

> THANK YOU!!

>

[Guest guest]

Judi,No idea what that means, not sure why you're bringing it up. How is that related to the information I sent you? And what's your doctor saying "in English" about why you need treatment? Is your disease moving too fast? Are you getting dangerously sick too often? Has the quality of your life deteriorated to the point where it's hard for you to function?Or maybe Dr. Furman can translate why a "low antibody count" (I never heard this before) would lead to treatment.-EllenOn Oct 28, 2009, at 9:35 PM, JAMKL4@... wrote:

Hello Ellen:

I also have low antibodies, below 300.

judi

Re: Just diagnosed

Vicki, My husband is also 53 and was just diagnosed in Aug. He is stage 1 and we were in a panic when we found out. This is a good group and they help in lots of ways. I still have lots of question but this group is great in getting answers to you. Do you homework on his cll because it is better to be informed. Good luck Debbie

>

> Hi!

> My 53 year old husband was just diagnosed yesterday with CLL. I have done some research online, but thought I would reach out to people instead of just reading the statistics. We see a blood specialist next week. The diagnosing doctor said "it's not a big deal. No need to worry". But, I am. I have so many questions and fears. I welcome all feedback.

> THANK YOU!!

>

[Guest guest]

Dear Judi,

It can be a jarring time, can't it? Let me tell you a little bit about my husband, 's, experience shortly before he was treated.

We knew the time was nearing (I won't go in to all the reasons) and so we planned to ask 's local oncologist if he would arrange a consultation for at MD . To our utter surprise, at 's next appointment Dr. Swan ASKED if we would like to travel to MD for a second opinion! Of course, our answer was yes.

We live in Virginia. That's a long hard trip by car, but we don't fly. was rather ill at this point in his disease, but he would not have passed up this opportunity unless he weren't able to sit up. So off we went to see O'Brien, M.D. To say that the visit made the long hard trip worthwhile is a huge understatement.

In the end, O'Brien communicated with Dr. Swan, and he followed her recommendations to the letter. I can't express the confidence/relief we felt at that needy time, knowing that there was agreement and co-operation between 's two oncologists.

It's very unusual for treatment to be needed *right now*. Almost all CLLers have time to follow through on a consultation with a CLL expert. My recommendation is that you find a way to warmly discuss this issue with your local oncologist prior to treatment.

Good fortune!

Jan

[Guest guest]

Judi - are you talking about an IgG level below 300? If so, the treatment would probably be IVIG to boost the IgG, not chemotherapy.Pat

[Guest guest]

I am not sure that I follow the series of postings on this topic, but I do want

to emphasize that a low antibody level should not lead to treatment and is not

likely to improve with treatment.

Rick Furman, MD

> >> >

> >> > Hi!

> >> > My 53 year old husband was just diagnosed yesterday with CLL. I

> >> have done some research online, but thought I would reach out to

> >> people instead of just reading the statistics. We see a blood

> >> specialist next week. The diagnosing doctor said " it's not a big

> >> deal. No need to worry " . But, I am. I have so many questions and

> >> fears. I welcome all feedback.

> >> > THANK YOU!!

> >> >

> >>

> >>

> >

> >

> >

>

[Guest guest]

I had rituximab and chlorambucil back in 2006 with good results, but had only

partial remision. My main objective at the time was quality of life and I did

achieve it.

regards

Chonette (UK)

>

>

> Hi:

> I was diagnosed with CLL in Sept 07. I am 58 years old.My hemotologist said

to watch and wait. I dontinue to see him every three months and the last time I

saw him he said that I should start a combination of rituxan and chlorambucil.

Can anyone tell me how this affects you and if I should get a second opinion. He

stated that this helped alot of his patients.

> I have night sweats sometimes and am a bit tired but still work everyday.

> I love this site and am getting many good answers but havent heard anything

about chlorambucil.

> thanks

> judi

> scottsdale, az

[Guest guest]

something about the risk for infections

i have been very tired but still am able to work everyday

i see him in dec and thanks to this site have many questions for him

thanks again

judi

Re: Just diagnosed

Vicki, My husband is also 53 and was just diagnosed in Aug. He is stage 1 and we were in a panic when we found out. This is a good group and they help in lots of ways. I still have lots of question but this group is great in getting answers to you. Do you homework on his cll because it is better to be informed. Good luck Debbie

>

> Hi!

> My 53 year old husband was just diagnosed yesterday with CLL. I have done some research online, but thought I would reach out to people instead of just reading the statistics. We see a blood specialist next week. The diagnosing doctor said "it's not a big deal. No need to worry". But, I am. I have so many questions and fears. I welcome all feedback.

> THANK YOU!!

>

[Guest guest]

Hi there,

My name is . I have been getting violently ill since 2007. No MD could

figure out what was wrong. I just read two books about leaky gut and candida. I

knew my candida would come back positive which it did.

I am on the third day of Nystatin and Candida diet. I am experiencing " die off "

I feel fluish but also extremely emotional like PMS 10x!

How long will this last?