If you have cancer.

If you had cancer.

If you know someone with cancer.

If you want to talk about cancer.

We won't pray.  We won't blame gods.  We won't give credit to gods.  

We face the diagnosis and know, it is what it is.  

To the extent that we can, we will define our own course.

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Latest Activity: Sep 26


Cancer changes lives.

We have to deal with medical profession.

We have to deal with medications.

We have to deal with new discomfort and pain.

We have to create dignity, where there is indignity.

We have to deal with family members, friends, coworkers, and strangers, in a changed way.

We resolve to go forward with strength, resilience, purpose, pride, and integrity.

We define ourselves. Cancer does not define us.

A Personal Cancer Blog

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Comment by Dr. Terence Meaden on July 4, 2014 at 2:45am

Trixie, I am so glad to hear your good news.

Comment by Daniel W on July 3, 2014 at 9:32pm
Trixie, just checking - how are you doing?
Comment by Daniel W on July 3, 2014 at 9:31pm
Julie-Anne, welcome to this group as well as to Nexus!
Comment by Daniel W on June 28, 2014 at 7:25pm

Trixie, it's hard.  I hope the doctors will start having some better news soon.  I truly feel for you.  

Strength comes from adversity.  Even if you didn't think you were strong before, as time passes, you will find strength you didn't know you had.  Hang in there Trixie!

James, I don't have anemia, but there is profound fatigue.  I am learning to live with it.  Dealing much better now than a year ago.

Comment by James M. Martin on June 28, 2014 at 5:56pm

Mine, Sentient, was haemolytic anemia. They thought I needed blood product so I had about six units over a period of about 10 days. Then, the oncologist checked the chart again and said the blood product was not doing the trick and he knew how to help: steroids. That category of drug works like speed on me. I was staying up till 3 a.m. screwing around on the computer, writing this or that. I could easily get addicted to steroids, but he warned me to start cutting back to half a scored pill, then none. It did the trick, though. I would not wish haemolytic anemia on anyone. You cannot walk one city block and not feel like you are ready for bed. Your whole body is weak.

Comment by Daniel W on June 28, 2014 at 5:03pm

James, I'm am rooting for you to make it to 91 years old.

My dad had anemia with rituxin.  When they stopped the med, he rebounded and felt a lot better.  It worked very well for quite a while before that.

Maybe you should search on line for that drug you cant afford, from Canada.  It's shocking what a difference there can be.

Comment by James M. Martin on June 28, 2014 at 4:30pm
No, Sentient, I have not had Gleevec. As for the Canadian, I would think there's little problem getting the drug shipped back to you in the U.S. once you have a prescription on file with one of the more reputable Canadian mail order drug distributors. My doc told me about another drug that counters the effects of the anemia, but he said I couldn't afford it. In any case, he says new drugs for CLL are coming along all the time. Apparently there is even a pill that can be taken. Or so he says. And BTW, the only cure I could have now would be stem cell transplant and he says I am too old to survive the process.
Comment by Daniel W on June 28, 2014 at 4:03pm

James, I remembered you talking about your CLL, and I'm glad you joined.  

My dad was on Ritoxin for his lymphoma.  He did pretty well for a couple of years, but he was in his mid 80s.  Then his prostate cancer and bladder cancer added to the mix.  Still, he was 91 when he died.

I wondered if you were on Gleevec for CLL.  That is what I'm on for GIST.  It also treats CLL but the insurance companies don't like the cost - for CLL,  I think it's about $120,000 a year.  In Canada it costs about 10% that  - very roughly.  I thought about offering to my health plan, fly me to Toronto, put me up in a nice hotel, give me a week off for sick leave, and arrange for a Canadian oncologist to write me an Rx for a Canadian pharmacy.  For my dose of Gleevec, the USA cost is about $88,000 a year, while the Canadian generic is in the range of $10,000 a year.  I could save the health plan beaucoup moola.  But it might not be legal for a US plan to make use of a Canadian Rx.

Comment by James M. Martin on June 28, 2014 at 3:24pm
Chronic lymphocytic leukemia for the past 13 years. Two chemos, the first with Fludarabine and Cytoxin; the second, Ritoxin and some other drug. (I try to not keep track of detail too much when it comes to my dis-ease.) The only side effect is anemia, but then at 71 I probably am supposed to tire easily anyway. When diagnosed, I was told that the bad news was I had CLL. The good news was, I probably would die of natural causes. I'd drink to that if I hadn't quit almost 20 years ago.
Comment by Plinius on June 24, 2014 at 7:35am

I think of you Trixie! Tell us your story as often as you want, perhaps we can come up with something that eases your load.


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