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Questions and venting

4 years 4 months ago #47956 by GKLINE
Nick nack
Sorry you are here. I'll bet you are too.
But we welcome you.
Please take a moment to realize that you have a fighting chance here.
Even though you have the same diagnosis as your sister, you have a few years of medical advances on your side.
Take a few minutes to wallow in the basement of sorrow...... And then ....... Get your Joker in gear and fool this cancer outta here.

George

Light a man a fire and he is warm for an evening.
Light a man ON fire and he's warm forever.

08/08/08...RC neo bladder
09/09/09...New Hip
=
New Man! [/size]
The following user(s) said Thank You: Nick-Nack

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4 years 4 months ago #47952 by Nick-Nack
wow... I am reading your story and its pretty much the same as mine all the way down to our age and the start of our treatments. The only difference is my Sister passed away from this three years ago today from the same thing. I start my treatments on the 27th. Scared here. Did you get a second opinion? I am always the one who keeps people up beat and happy and smiling... the joker I have been so down in the dumps....

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4 years 4 months ago #47950 by fighterm
Hi Jodie,
There was a similar discussion on the lymphoma forum. That's what I wrote there.
"The point is don't trust testimonials from the internet. They are mostly false. You hear only about "successes" and you never hear about all failures of the advertised products. When doctors do clinical studies they report all responses such as complete response (CR) or partial response (PR) or no response or progression of the disease. Then they do statistics on a big number of patients. If something works on one patient and does not work on the other 300, then it's not working. But in false advertising they will give you that one testimonial and they are not interested in failures. Please, don't do self treatments, they can interfere with your chemo drugs."
In 2013 I believed in an extract from tumeric to keep my lymphoma at bay. The extract was 100% curcuminoids. I read a lot of papers about it and read a lot of testimonials. I was taking it 4-5 grams a day for half a year and then I found out that my lymphoma progressed a lot. I was so disappointed. The guy to whom I wrote on the lymphoma site believes in cannabis oil. It improves appetite, sleep and the feeling of well-being. I think that when doctors give up on a patient, then it's time to try cannabis or other things.

66yo female, 1992-Non-Hodg. lymphoma(NHL) high grade, chemo, rads, 2007 NHL, low grade, rads, 2013 NHL low grade, stage 4, chemo till Jan 2015; 2014 TCC, first Turb 01/29/2015.

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4 years 4 months ago - 4 years 4 months ago #47947 by JodieG
FIGHTTERM - No - you didn't scare me at all! I really appreciate your insight! Thanks for taking the time to respond to me!

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4 years 4 months ago #47946 by JodieG
Sara Anne - your words are so soothing - I appreciate them so much! I really have been doing better about the eating thing since Saturday, so that's good. I hadn't heard of anything new in the news so I went out looking and found the article I think you were referring to in the New York Times. It can be very freeing to someone like me who thinks there must be something within my control that I can do to help my plight.

I'm still perplexed at the testimonies I read of people who cured their cancer by changing their diet, although most of them had breast cancer, prostate cancer, or colon cancer. I only found a scant few who had found success with their bladder cancer. Who knows? Bottom line is I know that will not fix me at this point.

After going back and forth on the phone between my doctor's office and the cancer center (who didn't have my paperwork yet), we finally got everything squared away and I start BCG treatments next Wednesday at 9am EST. I am still having a little bit of pain from the biopsy I had done back on Dec 10th, so I'm hoping all of that will be healed by the 14th. It will have been 5 weeks, so hopefully that is enough time.

I'm still a little confused about exactly what my protocol will be beyond the 6 weeks. I probably just need to call my doctor's office and ask exactly what I can expect over the next year or so (wish I had thought of it today when I talked to them!).

Well, thank you again so much for your responses to my questions. It really means so much to me!

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4 years 4 months ago #47923 by fighterm
Jodie, I maybe scared you too much in my post. I am sorry, I agree with Sara completely that you should eat nutritious food. We had this case in Canada not long ago that a native mother refused treatment of her daughter's leukemia because she did not want poisons in her body. The CPS went to court and the native judge decided in the favor of native people rights to choose treatments for their children. So the mother took her daughter to a quackery doctor who claims to cure her with vitamins. Her leukemia is very curable, but some people refuse curative treatments. The same is happening now in the USA. A 17 year old girl refuses treatment for Hodgkin's lymphoma that is also very curable. And her mother supports her. I was afraid that you were looking for some natural cures or diets instead of real medical treatments, so I wrote maybe too scary for you. But I said eat a normal diet. But vitamins and especially antioxidants (in big quantities as in supplements) are not recommended as they interfere with the mechanism of killing cancer cells. I take only vitamin D and calcium, my doc approved them with my chemo. And I eat several fruits a day (except for dark berries).

66yo female, 1992-Non-Hodg. lymphoma(NHL) high grade, chemo, rads, 2007 NHL, low grade, rads, 2013 NHL low grade, stage 4, chemo till Jan 2015; 2014 TCC, first Turb 01/29/2015.

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