7th Feb - Day 13 of 3rd chemo cycle - Info from internet on this cancer.

Posted by admin on 2/6/11

It was great having Keith here, he left yesterday, late morning.

I will be spending next week end with Roxanne an my Mum in Wales.
We are checking out potential venues for her wedding!!!
I am so excited!




OK, you are probably going to think that I am not being positive......NOT TRUE!
I just want to be sure that if my life is going to be shorter than I would like, I want to make sure that I am not making myself un-necessarily unwell.

For example, if I only have 2 years left....regardless of what measures I take, why would I say, OK....make me feel like shit for the next 4 months or so first?

That's like saying,
"I am going to bang my head really hard on this wall, because it feels great when I stop!"




The following information is the conclusions of studies on this cancer from:-

Medical College of Cornell University. NY. NY.
University of Texas Medical Branch, Galvaston. Texas.
Koshigaya Hospital, Dokkyo University School of Medicine, Koshigaya, Japan.

I retrieved it from the internet when I was first diagnosed.

After reading the reports in full, I have condensed their results in to the following bullet points.


  •  Only 22 patients with this tumour have been reported in English literature to date. (One report states 19 and another, 25).
  • Current therapies have usually resulted in poor outcomes.
  • The results confirm the particularly unfavourable prognosis of patients with small-cc of the...
  • All 3 patients with this tumour, 2 died within 4 months, the other patient, her clinical outcome has not been determined.
  • Current therapies have resulted in poor outcomes, and new therapeutic modalities should be explored.
  • After chemo-radiotherapy, she became neutropenic, developed sepsis, and died several days later of septic shock.
  • She was given palliative chemo-radiotherapy, she was evaluated after her radio therapy, the tumours had reduced considerably. She had nausea, skin rash and diarrhea, was referred to a hospice and died 4 months later.
The positive here is that no one seems to know what happened to lady No.3.
If she seems to have disappeared, and has not come to any follow up appointments.........
Where could she be?
On the run?
Deceased?

Anyway, I am taking this info with me to the hospital today, and I have my list of questions.

I will ask her to get her reference material out, so that we can look through it together, as I did initially.

I will make a sensible and informed decision after I have considered the answers to my questions.
I will post the questions and answers on my return, and share my final decision with you, when I have made it.

Am I scared of dying?
No.
Am I concerned about the amount of pain I may suffer leading to death, or undergoing treatment?
Yes.
Am I concerned about the quality of my life?
Yes.
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