Newly Diagnosed With Cll......... Needing Help.

Earlier this year (March) I was diagnosed with CLL the day before my 43rd birthday.  Happy Birthday to me!!  Needless to say I was devistated. I've always been in excellent heath, except for the past few years. 

I immediatley got online and starting reading everything I could on Luekemia.  WOW, a whole new world. The first thing I did was got a second opinion. (same outcome)  Then I had to make a choice on a doctor in my area.  I chose.."The James".  Ohio State University.  (The Arthur B. James Cancer Center)  So far I've been pleased. According to my team of doctors I''m in the early stage, aka "the watch & wait". 

I dont know what to do... I'm still in shock.  I find myself looking in the mirror saying to myself outloud.... YOU'VE GOT CANCER!    Its like this is happening to someone else.. it cant be me.  Then I remember it is me!!

 The doctors tell me that I will have to have chemo at some point, they just dont know when.  Right now I got every 3 months for blood work.  In the meantime the watch & wait is killing me.  I have decided to get my body, mind, and spirit ready. 

I need help.. I hear a lot about vitamins, diets  and building my immune system..

 I would love to hear from others with this illness...any thoughts , ideas, or suggestions??

 CeCe

On 9/18/2007 ItsMyTime.... wrote:

Earlier this year (March) I was diagnosed with CLL the day before my 43rd birthday.  Happy Birthday to me!!  Needless to say I was devistated. I've always been in excellent heath, except for the past few years. 

I immediatley got online and starting reading everything I could on Luekemia.  WOW, a whole new world. The first thing I did was got a second opinion. (same outcome)  Then I had to make a choice on a doctor in my area.  I chose.."The James".  Ohio State University.  (The Arthur B. James Cancer Center)  So far I've been pleased. According to my team of doctors I''m in the early stage, aka "the watch & wait". 

I dont know what to do... I'm still in shock.  I find myself looking in the mirror saying to myself outloud.... YOU'VE GOT CANCER!    Its like this is happening to someone else.. it cant be me.  Then I remember it is me!!

 The doctors tell me that I will have to have chemo at some point, they just dont know when.  Right now I got every 3 months for blood work.  In the meantime the watch & wait is killing me.  I have decided to get my body, mind, and spirit ready. 

I need help.. I hear a lot about vitamins, diets  and building my immune system..

 I would love to hear from others with this illness...any thoughts , ideas, or suggestions??

 CeCe

I was diagnosed in 2002 with CLL.  When my doctor gave me the news, she recommended that I buy a book, "Beating Cancer With Nutrition" by Patrick Quillin.  In the book Mr.Quillin recommends taking  vitamins to help fight the cancer.  I have been taking the vitamins for about 5 years.  My CLL has been advancing at a slow rate and I think this is due in part to these vitamins. They are called "ImmunoPower".  I cannot quarantee that they will help you but I will continue to take them. I hope this information helps.

Gene 

On 9/18/2007 ItsMyTime.... wrote:

Earlier this year (March) I was diagnosed with CLL the day before my 43rd birthday.  Happy Birthday to me!!  Needless to say I was devistated. I've always been in excellent heath, except for the past few years. 

I immediatley got online and starting reading everything I could on Luekemia.  WOW, a whole new world. The first thing I did was got a second opinion. (same outcome)  Then I had to make a choice on a doctor in my area.  I chose.."The James".  Ohio State University.  (The Arthur B. James Cancer Center)  So far I've been pleased. According to my team of doctors I''m in the early stage, aka "the watch & wait". 

I dont know what to do... I'm still in shock.  I find myself looking in the mirror saying to myself outloud.... YOU'VE GOT CANCER!    Its like this is happening to someone else.. it cant be me.  Then I remember it is me!!

 The doctors tell me that I will have to have chemo at some point, they just dont know when.  Right now I got every 3 months for blood work.  In the meantime the watch & wait is killing me.  I have decided to get my body, mind, and spirit ready. 

I need help.. I hear a lot about vitamins, diets  and building my immune system..

 I would love to hear from others with this illness...any thoughts , ideas, or suggestions??

 CeCe

Hi CeCe,

I guess this response is kind of late, and I hope that you have received som positive responses by now, but I do want to share my experience with CLL with you. I was diagnosed with CLL over three years ago. I was 53 years old at the time. I also had a "wait & watch" period of about eight months. I then began chemotherapy with Rituximad. If you haven't heard of it already, I'm sure you will. The Rituximab, or Rituxan as it is called, had very few side effects on me. I did have flu like symptoms the first night of the day it was infused. After that the effects were minimal. I received it five days a week for one week a month for about nine months. I completed that regime just over a year and a half ago, and heav been in remission since then. My blood counts have been normal, and my doctor has switched me from 3 month interval check ups to 6 month intervals. I feel fine, and hope it continues.

 I think you have already made the first, and possibly most important step, by getting your body, mind, and spirit ready. I feel that prepairing your mind and spirit is to go to a place that gives you comfort and strength. How you arrive at that place is up to you. Whether it is through faith, support groups, family & friends, or what ever means you choose, I wish you luck. I have always been a healthy eater, and have never been a fussy eater, so it was easy for me to transition to an even more healthy diet. I have never smoked and I'm a casual drinker, so again, no major lifestyle changes. The nutritional information that's available is overwhelming and I'm not sure how accurate it is. For example, you know how one study says butter is bad, and then a year later an "expert" will tell you to quit eating margarin and use butter??? I've changed my diet to include much more fruit and vegetables, significantly reduced read meat, eat only whole grain breads (unless I'm at a party or out for dinner and none are available), and reduce sugars. I have never been a soda drinker, so that was easy to give up. I drink a glass of healthy fruit juice every morning. By healthy I mean low in sugars and additives. Read the labels and choose the healthy ones. They may cost a little more, but it is a small investment. I also have a cup of green tea every morning. I still have some desserts and unhealthy comfort foods once in a while. Remember... we have to have some fun in life too.

I think excercise is important. I have always been active and excercised routinely. Pick whatever form of excercise you like and saty with it. Aside from hopefully helping you fight the CLL, it will make you feel better and look good.

When this first happened to me, I was expecting the doctor to give me an accurate assesment of what to expect. I realize now that no doctor can do that. The CLL effects everyone differently and so does the treatment, so I can't tell you what to expect. I don't know what to expect for myself.

I hope this has helped you in some way.

 Good luck,

hw333

On 12/16/2007 Jack F. wrote:

 

On 9/18/2007 ItsMyTime.... wrote:

Earlier this year (March) I was diagnosed with CLL the day before my 43rd birthday.  Happy Birthday to me!!  Needless to say I was devistated. I've always been in excellent heath, except for the past few years. 

I immediatley got online and starting reading everything I could on Luekemia.  WOW, a whole new world. The first thing I did was got a second opinion. (same outcome)  Then I had to make a choice on a doctor in my area.  I chose.."The James".  Ohio State University.  (The Arthur B. James Cancer Center)  So far I've been pleased. According to my team of doctors I''m in the early stage, aka "the watch & wait". 

I dont know what to do... I'm still in shock.  I find myself looking in the mirror saying to myself outloud.... YOU'VE GOT CANCER!    Its like this is happening to someone else.. it cant be me.  Then I remember it is me!!

 The doctors tell me that I will have to have chemo at some point, they just dont know when.  Right now I got every 3 months for blood work.  In the meantime the watch & wait is killing me.  I have decided to get my body, mind, and spirit ready. 

I need help.. I hear a lot about vitamins, diets  and building my immune system..

 I would love to hear from others with this illness...any thoughts , ideas, or suggestions??

 CeCe

Hi CeCe,

I guess this response is kind of late, and I hope that you have received som positive responses by now, but I do want to share my experience with CLL with you. I was diagnosed with CLL over three years ago. I was 53 years old at the time. I also had a "wait & watch" period of about eight months. I then began chemotherapy with Rituximad. If you haven't heard of it already, I'm sure you will. The Rituximab, or Rituxan as it is called, had very few side effects on me. I did have flu like symptoms the first night of the day it was infused. After that the effects were minimal. I received it five days a week for one week a month for about nine months. I completed that regime just over a year and a half ago, and heav been in remission since then. My blood counts have been normal, and my doctor has switched me from 3 month interval check ups to 6 month intervals. I feel fine, and hope it continues.

 I think you have already made the first, and possibly most important step, by getting your body, mind, and spirit ready. I feel that prepairing your mind and spirit is to go to a place that gives you comfort and strength. How you arrive at that place is up to you. Whether it is through faith, support groups, family & friends, or what ever means you choose, I wish you luck. I have always been a healthy eater, and have never been a fussy eater, so it was easy for me to transition to an even more healthy diet. I have never smoked and I'm a casual drinker, so again, no major lifestyle changes. The nutritional information that's available is overwhelming and I'm not sure how accurate it is. For example, you know how one study says butter is bad, and then a year later an "expert" will tell you to quit eating margarin and use butter??? I've changed my diet to include much more fruit and vegetables, significantly reduced read meat, eat only whole grain breads (unless I'm at a party or out for dinner and none are available), and reduce sugars. I have never been a soda drinker, so that was easy to give up. I drink a glass of healthy fruit juice every morning. By healthy I mean low in sugars and additives. Read the labels and choose the healthy ones. They may cost a little more, but it is a small investment. I also have a cup of green tea every morning. I still have some desserts and unhealthy comfort foods once in a while. Remember... we have to have some fun in life too.

I think excercise is important. I have always been active and excercised routinely. Pick whatever form of excercise you like and saty with it. Aside from hopefully helping you fight the CLL, it will make you feel better and look good.

When this first happened to me, I was expecting the doctor to give me an accurate assesment of what to expect. I realize now that no doctor can do that. The CLL effects everyone differently and so does the treatment, so I can't tell you what to expect. I don't know what to expect for myself.

I hope this has helped you in some way.

 Good luck,

hw333

 

Hi - I'm a little late on this, but I wanted to say Thank you.  Your words are comforting and soothing.  I'm in a different place with this now than I was when I first posted.  (emotionally that is).   Its ironic, but I've done exactly a lot of the things you've mentioned. 

I was recently laid off from my job, (just one on Gods many blessings) and I've been able to focus more on my health and other areas in my life. Still havent gotten to that "excercise thing"...... but I'm working on it.  :-)

Thanks again for your words and please keep in touch.

CeCe