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Newly diagnosed leukemia

Newly diagnosed leukemia

Posted by Mojo on Jan 24, 2012 6:29 pm

My world changed dec 19/2011 when I was told that I did not have mono but had smudge cells in my CBC which indicated CLL. Of course Christmas holidays meant the hematologist office closed until jan 3.... Got the call January 5 that I see the staff at cancer center feb 2. What can I expect? I am very fatigued and have had recent repeated chest infections but no other symptoms.

RE: Newly diagnosed leukemia

Posted by Sara_admin on Jan 26, 2012 3:48 pm

Hi Mojo and welcome to the community!  What a time to be told that you have cancer.  It seems like there are a lot of people on this site who were diagnosed right before Christmas. 

There is some detailed information about CLL in the Canadian Cancer Encyclopedia.that you might want to check out.  If you want to talk to someone over the phone who has had a similar experience you could try Peer Support.

Anyone want to share their experience with their first visit to the cancer centre?

RE: Newly diagnosed leukemia

Posted by Cyn on Feb 20, 2012 3:24 pm

I'll share my experience about my first trip to the cancer centre.
After being diagnosed with CML a week and a half prior, I went to the Cancer Clinic in Kelowna.  I approached the front desk and asked the lady if there was anyone I could speak to about my cancer.  When I was diagnosed my mind was a blur and now I had had time to think and gathered a list of questions.  These weren't questions that necessarily required a doctor - I simply needed some one to talk to and perhaps share their experience so I wouldnt feel so alone. 
After finding my name in her computer she informed me that she was unable to help me as although I was in her computer, I required a doctor's referral and after I obtained that all of the support groups, information etc compiled for patients would be available to me.
The following week I asked my family doctor for a referral so I could get in touch with a support group for leukemia.  He had his secretary forward one to the Centre.
Two weeks subsequent, I was again in my doctor's office when he informed me that I had been declined for a referral to the Cancer Centre.
So there I was, on chemo, diagnosed with leukemia yet turned down when I asked for help?.  WTF?! 
Thank GOD for the internet.  Its now Feb 20th and I still have only seen my hemotoligist once - on Dec 2.  I have been to the clinic to pick up my pills but have spoken to no one.   I have had to suffer alone online.  This really bothers me as I am someone who very rarely asks anyone for help.  It was extremely difficult for me to walk into the Cancer Center in the first place.  If anyone has an "in" with Kelowna's Centre, please pass along my story - I am certain they did not intentionally turn me away?  Right??  Or do I have the Good Cancer and not part of this family?

RE: Newly diagnosed leukemia

Posted by Cyn on Feb 20, 2012 3:41 pm

Mojo,
Sorry to vent on your blog.
I do not know what meds you are on but here is my experience.  I started Gleevec Dec 2.  For the first while I had different strange side effects - nothing I couldn't handle - more annoying than sick.  Nausea is prevalent most times but I found eating small portions throughout the day really helped and yes smoking marajuana in small doses works immediately.  I had a lunch meeting one day and was soooo tired and sick feeling.  I had one puff and was able to not only eat but have a good meeting.
Tired/weak mostly and a rash you can't really see but feel all over my body.  I was lucky to be able to adjust my work hours.  The pill must be taken with food both under and above it and lots of water.  Twice I didn't eat enough and was sick.  Then an hour later I feel really tired and at times nauseas.  I have a nap between 11 and 12 then head to work.  I found that worked best as before I was tired/sick at morning coffee break and exhausted by 2pm. 
I have changed my diet to mostly vegan - no dairy and meat.  Some days are really good - I went skiing one day and sledding another.  I strongly suggest you limit these activities though as both set me back a couple days.
Go online - do your research.  Look into cannabis oil, H2O2 therapy and soda bicarb therapy.  Explore cancer connection and know you're not alone.
I hope this helps a bit - good luck.

RE: Newly diagnosed leukemia

Posted by Mojo on Apr 5, 2012 5:05 pm

Thanks so much for both your replies. I sense your frustration. Keep doing what you are doing and take care of you