What do I do now?

[Guest guest]

I began the protocol one week ago. Sunday I experienced hunger that was beyond

normal hunger and felt as thought I was literally punishing myself. I spent

Saturday hungry as well but focused on the pounds I was losing and made it

through the day. Well I gave in Sunday and ate. I resumed the diet again Monday

and found myself today extremely hungry and of course ate.

What do I do now? How do I start over? Should I wait a week or so? I just

don't think I should be this hungry. I know the difference between mental and

physical hunger. Trust me this is physical. I am bent over with stomach pains

and growls. I tried water, extra protein, extra veggies but I am hungry every

day. To top it off I was taking an appetite suppressant.

[Guest guest]

I take an apetite suppressant called Adipex. This helps to curb my hunger. On

mother's day, I crased and ate and still lost one pound the next day.

[Guest guest]

It sounds like something is wrong. After being on the protocol for a week, this should not be happening.What dose are you on? Injection or sublingual? Are you refrigerating your HCG? Any chance it could have gone bad?From: BytesU2 <bytesu2@...> Sent: Tuesday, May 12, 2009 4:50:48 PMSubject: What do I do now?

I began the protocol one week ago. Sunday I experienced hunger that was beyond normal hunger and felt as thought I was literally punishing myself. I spent Saturday hungry as well but focused on the pounds I was losing and made it through the day. Well I gave in Sunday and ate. I resumed the diet again Monday and found myself today extremely hungry and of course ate.

What do I do now? How do I start over? Should I wait a week or so? I just don't think I should be this hungry. I know the difference between mental and physical hunger. Trust me this is physical. I am bent over with stomach pains and growls. I tried water, extra protein, extra veggies but I am hungry every day. To top it off I was taking an appetite suppressant.

[Guest guest]

I am also hungry constantly and my stomach has a pain like it is extremely empty. I have been able to press through but yesterday felt faint and very weak when I waited too long to eat. I am strictly following the diet and wonder if I need some extra protein. The first few days I felt ok and the last few I feel terrible and have no energy. It is a struggle. I am losing about .5 lbs a day and in 12 days have lost 6 lbs.

From: D C <dreamingofafrica45@...>Subject: Re: Re: What do I do now? Date: Tuesday, May 12, 2009, 8:07 PM

its very possibe that your dose is too high. Too much HCG in the system mimicks not enough - you experience a lot of hunger and often don't loose weight. If I were you, I'd lower your dose to 175 or 150 for 3 days and see how your body reacts. If 200 is too high, the lower dose should eliminate your hunger. Remember that HCG has a 3 day lag-time, so it'll take a bit for you to notice a change after trying a new dose.

If you did the same diet in Feb, you were probably at a different dose, or, you were at the same dose but now your body, having less weight to loose than in Feb, can't take that much HCG now.

Let us know if you figure this out - you shouldn't have to suffer from extreme hunger while on this diet!

From: BytesU2 <bytesu2 (DOT) com>Sent: Tuesday, May 12, 2009 5:43:05 PMSubject: Re: What do I do now?

I thought the same thing so I tested the HCG with a preg test and it came back positive. I am taking 200 through injections. Yes my HCG is refrigerated. I also thought I did a good job loading. I am really stumped and disappointed. I have the focus to do the diet but I can't focus when my body is demanding food. I did this diet in Feb thru a clinic but did not experience this type of hunger. >> It sounds like something is wrong. After being on the protocol for a week, this should not be happening.> What dose are you on? Injection or sublingual? Are you refrigerating your HCG? Any chance it could have gone bad?> > > > ____________ _________ _________

__> From: BytesU2 <bytesu2@... >> > Sent: Tuesday, May 12, 2009 4:50:48 PM> Subject: What do I do now?> > > > > > I began the protocol one week ago. Sunday I experienced hunger that was beyond normal hunger and felt as thought I was literally punishing myself. I spent Saturday hungry as well but focused on the pounds I was losing and made it through the day. Well I gave in Sunday and ate. I resumed the diet again Monday and found myself today extremely hungry and of course ate.> What do I do now? How do I start over? Should I wait a week or so? I just don't think I should be this hungry. I know the difference between mental and physical hunger. Trust me this is

physical. I am bent over with stomach pains and growls. I tried water, extra protein, extra veggies but I am hungry every day. To top it off I was taking an appetite suppressant.>

[Guest guest]

Hi Carol -

1) study & learn all you can about CLL -

http://www.clltopics.org and

http://cllcanada.ca/2010/index.htm

are excellent sources for CLL information

2) asap - find a CLL expert doc that will work with you,

your local PCP & your local hemotologist/oncologist. See the

following online resources to help find a CLL expert doctor

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

http://www.cllfoundation.org/drdirectory

3) find a local hemotologist/oncologist willing to work with

your CLL expert doc - your primary care physician (PCP) can

probably help with this

4) has your hubby had the following blood tests - FISH

analysis, Flow Cytometry, IvGH analysis, ZAP-70. If yes, get

copies and go to the above web sites to learn about CLL. The

best one to start with is

http://www.clltopics.org/PI/PrognosisatDiagnosis.htm

5) YES - keep copies of all your tests, blood work, etc.

6) organize your hubby's team with 1, 2, 3 above - then be

pro-active and take good care of yourself & your hubby

7) http://www.cllforum.com is the oldest and largest

discussion forum devoted to CLL (more general in nature -

has list of resources and links for CLL info)

Here are some more resources-

lymphoma.org/booklets http://tinyurl.com/3hxg3rf - They have

a booklet that is very good - " The Red Book " . You can order

free copies or read it online http://tinyurl.com/42x78za

One of the Best Resources - CLL Topics is at

http://www.clltopics.org/PI/PrognosisatDiagnosis.htm and the

article updates are at http://updates.clltopics.org/

Note: if you register for the updates@ clltopics.org you can

then read and post to the comments section that's after each

new article. Again, it's a lot of interesting information.

Some of the notable posters here are Dr. Hamblin, from

CLL Canada, and a few doctors (general practice) who

themselves have CLL.

ACOR has a discussion group that is also more medically

oriented. http://cll.acor.org/help.htm

If it fits your life CLL Christian Friends is a more social

support group. Dr. Hamblin, one of the top CLL specialists

in the world has a thread on that site and answers questions

directly which is the reason I joined the site, but it has

become a great source of moral support for me as well.

One of the Best resources - Dwyer started the

excellent http://cllcanada.ca/2010/index.htm - again more

scientifically/medically oriented. is one of the best

researchers and nicest people I have encountered on the

lists. This is not a discussion group - it's a source of up

to date information about all things related to CLL. Chris

is also is very active on this discussion group

/

(http://www.cllinfogroup.org)

You will see overlap in these groups. Most people use the

same identifier, but some use different names on different

lists which gets confusing at times. You think you are

talking to two different people and discover that it's just

one.

For me being pro-active and learning all I could about CLL

helped me to accept and deal with my situation. Knowing what

to watch out for and how to take care of my CLL put my CLL

in perspective. I'm in watch & wait (w/w) mode but with CLL

one needs to be diligent and have frequent blood testing to

monitor the disease.

I find it really helps me to make every possible effort to

stay mentally, emotionally & spiritually fit. Enjoy life,

spend time with family and loved ones. And good friends are

priceless.

Good luck - Patti

[Guest guest]

I wanted to take a minute to thank everyone who responded to

my post. I've been reading some the links you sent me and

I've learned a great deal from the web sites and forums as

well as from the members of this group. A special thanks to

Ellen and Mike for their e-mails. They are very helpful. I

have printed a lot of information today and well as Ellen

and Mike's emails and I'm giving them to my husband tonight.

Hopefully he will read what I give him and agree to go to a

hematologist and see if he needs treatment now or stay on

watch and wait.

I probably won't be posting much until after I do a lot more

reading and learn as much as I can. I worked in the medical

field as office manager for psychiatrists, a nephrologist

and a Internal medicine physicians for over 12 years and

then in the hospital setting as administrative assistant to

the director of nurse and hospital administrator. Maybe

some of my medical knowledge I picked up while working in

the medical field will come back.

I live in Alabama. Does anyone know a great hematologist in

my area?

Thanks again,

Carol

[Guest guest]

In making recommendations for a new member, Patti mentioned

that the CLL Forum is the oldest and largest discussion list

for CLL. The CLL Forum was formed in 2006.

She may have been thinking of the Association of Cancer

Online Resources (ACOR) CLL list which was formed in the

mid-1990s. It is the oldest and largest with over 2500 CLL

participants.

Mod's note from : Thanks for the correction, Marilyn.

FYI: This group, , with 832 members, is now the only

fully-moderated CLL list - no spam, no hacked email accounts, etc.

/ (formed in 2003)

[Guest guest]

Hi Carol -

* In addition to the responses you get here one of the best

resources to find a CLL specialist close to where you live

is to go to the ACOR list of CLL specialists. It's about 15

pages - the USA docs start on page 4. Review this to find

docs close to where you live.

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

* The USA National Cancer Institute has a list of the 40

designated " comprehensive cancer centers " in the U.S. These

are characterized by for their excellence. One of these NCI

centers is in Alabama -

University of Alabama @ Birmingham

Tel: (205) 934-5077

I looked at a map of the US and Alabama is not too far from

2 of the 7 USA cancer centers that are part of the

prestigious CLL Research Consortium. The 2 close to Alabama

are

1) Dr. Keating @ MD in Houston, Tx

(713-745-2376). Note: dr. is considered one of the

leading CLL specialists in the USA. In addition to Dr.

Keating there are 4 other CLL specialists @ MD .

2) Dr. Byrd @ Ohio State University in Columbus, Ohio

(614-293-7509). Dr. Byrd is also considered one of the

leading CLL experts in the US

It's important to find a CLL expert doc that will work with

you, your local PCP & your local hematologist/oncologist (if

your CLL expert doc is some distance away from where you

live).

Then find a local hematologist/oncologist willing to work

with your CLL expert doc - your primary care physician (PCP)

can probably help with this.

Warm regards - Patti K

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