Welcome and Hello: This blog is still under construction at this time, hopefully it will grow and get better as I have the time to do it. I have not spent any time working on this blog lately. I have fallen into the Leukemia Labyrinth or the maze of CLL and MBL. This blog is mostly for myself . Thanks for coming!

Sunday, September 23, 2018

Updating info Today

I think it is time I updated this site. I will try to add some links on here that may be helpful to someone.  This will just be a mixture of  current links I have found and I cannot verify that each one will be valid.  Also check with your doctors before you begin any other treatments. I just find these links on the Internet and cannot assume they are all correct. I am usually putting in these links in here as I forget them or can't find the link myself. Please be aware the Internet is not always accurate and I cannot assume liability for any of these links, perhaps one will be helpful to one person.

l.  Dr. Susan Leclair at Patient Power has some good info for us  Dr. Susan Leclair at Patient Power.  Also Dr. Susan Leclair has a talk on Lymphocytes Doubling
Also When do White Blood Count Numbers Trigger Treatment

2. There is a lot of good info in the CLL Guide put out by the Leukemia and Lymphoma Society

3. I found this blog and really like it but each person has to make the choice themselves with their doctors on what to take when you have CLL.   CLL Alternatives  Please be cautious and consult with all your doctors before taking any new vitamin or drug.

4. This is a British link on staging with CLL   and another UK site on Treatment Decisions for CLL might be different here who knows.

5. Typical Treatment of CLL from the American Cancer Society may be different here.

6. Printable Question sheet from the Leukemia and Lymphoma Society and their Treatment Questionnaire.

7. Inspire Health in Victoria, B.C. provides services for cancer patients.

8. Just a link I am looking into and can not verify this info as I am not a medical person
trial studies ibrutinib and rituximab 

9. Personalizing CLL Treatment by Patient Power also their video What is CLL and another video of the highlights of their conference

10. General Searches available for CLL at the American Society of Clinical Oncology

11.  Bruce Gimplin's article on CLL is Just Part of  My Identity, I have some of these links on the sidebar already but always nice to put them in here too.

12.  Preparing for Chemo, just found this print out and have gone over it totally from What Is CLL. I cannot guarantee the security of each of these sites either.

I have also received wonderful help from:

The Leukemia & Lymphoma Society of Canada:: BC/Yukon Region
:: 303 - 1401 W. Broadway, Vancouver, BC  V6H 1H6
:: P: 604.733.2873 ext. 5191 | TF: 1.866.547.5433 | F: 604.733.2848

When the doctors tell you there is nothing you can do for CLL then start to look around for alternatives, check them out, ask your doctors and do research on what you can do. If you do see a naturopath make sure they are aware of the kind of leukemia you have, some of the vitamins and treatments actually made me worse before I found a new doctor, who knew the disease There are many vitamins and treatments that are not good for CLL and some that are good. Some places have naturopaths that are also oncologists, this is helpful as they know the disease. I hope you are having a wonderful day and cheers, Nora.

Tuesday, March 8, 2016


I know I should be publishing some kind of blog in here but I just can't face it.  What is the matter with me.  I started this blog with good intentions to write but I can't.  I am writing over at my other blog "Island Rambles".  
When I feel I have something to write about I will come back.

Wednesday, February 10, 2016

Blog Status

I am just putting in a post as it has been a year since I posted and Google gets cranky if a blog is not updated.

Friday, February 6, 2015

Taking a Break

I am taking a little break from the realities of life.  I will start working on this blog again when I have time and feel stronger.  I find it so overwhelming as there is so much information on this subject and yet there is no clear cut protocol for treatment.  I guess it depends upon each case. I could research endless amounts of medical information and still not know what to do.  So I am taking a reality break and staying in denial for a while.  I work on my other blog as it is my escape.  I will continue to put in some links I think may be helpful to others later on when I start to blog again.

Thursday, January 15, 2015

Video for Newly Diagnosed

Here is a link to a great video for the newly diagnosed:

Bruce Gimplin: CLL Is Just Part of My Identity

It is a very calming video and also there is a transcript below if you do not have a video player. It gave me some support that there were others out there going through similar situations.  He is a very good speaker and he gives some clarity to the emotions and feelings that would be universal to anyone given this diagnosis.
It is on Patient Power and good place to visit also.

Have a great day!  

Friday, January 2, 2015

Finding Programs and Contacts

It is very reassuring to talk to others who are going through similar situations and you can also learn about what free educational and support programs are offered by the Leukemia and Lymphoma Society.  They have local offices listed on their website.  This is the one that is close to where I live in British Columbia.  There are offices all over Canada and the U.S.

This is the Leukemia and Lymphoma Society 
Vancouver Office:
1682 West 7th Avenue Suite 310 
Vancouver, BC V6J 4S6
(604) 733-2873 (phone) 

Thursday, January 1, 2015

Find a Forum or Community on CLL

Are you looking for a forum or a community on CLL?  Well here you go, this is the link to the LLS Blood Cancer  Discussion Boards. I have not gone on there yet but looks like it would be very helpful to anyone who is looking to connect to others with similar illnesses and challenges.

Here is the link to the Chronic Lymphocytic Forum Section.  I will get on there eventually.  Forums can be a lot of fun as well as a place to gather info.

A Wonderful Book on CLL

There is a great book all on CLL, here is a link to it.  It is a pdf file from the Leukemia and Lymphoma Society.

I really find their website, the Leukemia Society, to be so great. It is a lot of info but if you just do a little each day it is not so overwhelming.  I guess it is a matter of trying to focus on one part of the information depending upon what stage you are at. And also to remember not to do too much on this topic.  You have to remember that living is not all about CLL.  This blog is about that subject but it is important to get out and walk in nature and remember who you are as a person on this earth .

Basic First Questions to Ask

Basic First Things to Do When Diagnosed
Here the Leukemia and Lymphoma Society has given us some basic first questions to ask the doctors for yourself, if you are diagnosed or for your child.  It is in a print out form which is good. You may have other questions to add to it as it pertains to your personal health situation.
Link to Question Document

I am going to put in a series of basic first links that may be useful.
I think it is the initial part of the diagnosis when it is the most difficult for a person to know what to do or how to begin so I am going to focus on that for a while.  In my own case, the specialist spent a few minutes with me telling me what it is and that if I had any other questions I should go to my doctor.  Since my doctor was in retirement mode, I felt kind of lost.  I googled CLL.  I called around to some entirely wrong areas and then gave up. There was nothing local that I could find with any info.

Saturday, November 29, 2014

How To Get Started Phase 1

I will soon get a page set up about myself.  I have not had time to do that yet.  I would rather put in some helpful ideas today.  I think the first thing to do when you find out you have CLL or MBL is to be calm.  For MBL there is no real treatment that I found, it may vary for each case though.  It is a Watch and Wait kind of thing for some cases. So be calm and relaxed.  Take really good care of yourself. Eat healthy and sleep well.  Continue living your normal life seeing your doctors and following their advice. Make sure you have your blood tests done at the prescribed times. Remember to have joy and laughter each day.  Have a Great Day, cheers Nora

Thursday, November 27, 2014

Starting This Blog

I am not really comfortable here yet on this new blog, I still feel like a visitor. I am slowly doing research but have found it all too confusing and feel that I am such a novice that I cannot really inform anyone else when I can't even figure out the information for myself. I know I will sort all this out. Soon.
This blog will be a bit messy until I fix it up. Have a happy Day.  Cheers, Nora

Wednesday, November 26, 2014

First Post New Blog

As You can see this is just the first post and I am unsure about how to proceed with this as it is all new to me.  There will be some growing pains as I figure out this new blog.  I have found it so difficult to get good information that I decided to start my own website. It has been a struggle to find a good site to start out on.
cheers and have a happy day, Nora
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