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I have read statistics for 3 year survival and 5 year survival. Guess I’m wondering how the statistics go once you’ve gone 3 years without a recurrence….still hoping that the odds improve with each passing scan….There was someone on last year who had survived 15 years…don’t know how many are out there.
I don’t know what kind I had! Should find out!Randi…Wonderful! Would you happen to know of any statistics of recurrence after a period of 3 years? You just posted on my 3 year clear posting, and I just reread that you are now 3 1/2 years out and your doctor says only a couple of more scans. I have never really gotten an emotional handle on the diagnosis so I examine everything from all angles! Wondering about the statistics this far out…Has your doctor said anything about that?
Thanks!(I know what you mean by scary..about 3 months from scan I start to feel it’s time for reassurance!) My next scan is 6 months away….
Lisa…Have you considered going to a nutritionist? I have broken out in different rashes and have been getting some good advice from a nutritionist specializing in herbal remedies for regulating the immune system. I hope during the past 3 weeks since your last post, that you have found some relief. Itching is the worst. I had severe allergic reaction to the chloroprep from the hernia surgery…the itching was almost worse than the surgery itself…could drive a sane person mad. xx00Kathy
Lisa, I am so happy to hear this wonderful news. You have really shown us how to fight! Maybe you can relax a bit now???!!
Hugs, KathyI am checking the messages over a period I missed and notice this one from Sandie. I am wondering how you are doing? I, too, (and many others, too) had a hard time dealing with this diagnosis and the following physical and mental roller coaster. Let us know how you are…it has been 9 months (I’ll check to see if there are other threads with you in it), but I am so glad to hear about this scan and to know that things are looking brighter for you. The diagnosis really is an upfront visit with mortality, but there is a lot of hope and support here. I hope you continue to do well……
Jackson…I second all you said. The above people and more have sustained me these past two years. The willingness to share stories, to add information and to be a cheering section have been vital to my ability to go forward with this, quite frankly, frightening disease. The husband of a friend of mine once referred to it as “your predicament.” Exactly.
But this website has been a source of comfort and inspiration. I know it has been and will be for many more……..Thank you all…….Hello….I’m not that long..2 1/2 years, but considering I was told by the first doctor that he could give me “palliative care” I’m feeling very grateful at 2 1/2 years. My doctor told me in January I wasn’t “out of the woods yet” but these are 2 1/2 cancer free years I didn’t think I’d have.
I asked the same question as you two years ago and was told that the success stories aren’t “lurking around” on this website! So maybe there are many more out there. Although not cc, I have a friend who just passed her 4 year mark cancer free of pancreatic cancer. Now THERE is a success story. We had the same surgeon. We say it’s because of our beloved Dr. Michael Choti. Good luck to you!
KathyDon’t forget “Fighting Cancer One Bite At A Time” and Kris Carr’s website…all have delicious recipe…the first one has for every stage..pre-chemo, during chemo and rebuilding. It’s fabulous….
Rebecca…Call Dr. Choti’s office at Johns Hopkins. He was my surgeon 2 1/2 years ago and is absolutely WONDERFUL. When you call, if you have any problems, (which I don’t think you will with Ann who will answer), ask for a call-back from Eden (his nurse). Tell her someone (you can mention me) said to call. He will give you a full answer..is extremely competent and also kind. You will know where you stand and what the options are.
Best of luck. Sending all good wishes and lots of hugs,
Kathy WrightBob,
I so appreciate your message. It is one I need to hear over and over because truthfully, I AM blessed. I have begun taking a young Honduran woman, just turned 30, to NIH to get her treatment for aplastic anemia. She has come all this way on pure faith that she will overcome this. We had a wonderful conversation yesterday, as much as my faulty Spanish and her almost non-existent English, would allow. She is facing a bone marrow transplant and would like nothing more than to have her mother here “to go through this experience with (me)”as she put it.(U.S. denied her mother a visa
I am reminded over and over that there are others who face greater challenges with such strength and courage, and I have much to be grateful for. Thank you for writing.
KathyThank you Jackson (Is that your name? My e-mail address is chezWright and everyone calls me chez when they don’t really know me….(my name is Kathy)…I am hoping to keep it positive!!! My goal
What did you find out about the CA-!9-9 numbers for your husband?
Mine went up over the normal range last summer and I panicked. Marion told me that it was too soon to decide anything. It’s down to 13.5 now. I have asked several times over the past 6 months what could cause the rise. I got the answer, “We don’t know. Something environmental.” That was the answer twice. The last time was another “We don’t know. It can be caused by scar tissue.” I didn’t ask for an explanation of that. Maybe I should. The doctor took it as a sign to watch closely for awhile, but he wasn’t alarmed by it, and it did go down again. I know the feelings you are going through. It is VERY hard……
Sending you warm thoughts. Please let us know what has been happening the past couple of weeks. Maybe you have and I’ve missed the post.
KathyMy doctor told us that there is no place at this point where records are kept. He felt that the rarity of this cancer necessitates a worldwide collection of data to be able to analyze better. Where results of lab reports are collected in other cancers, they are not with CC. Marion indicated that one is to start. Can you tell us when, where, and who will do the collection?
It seems the person who started this thread had an interest in forming some kind of data base….or was this for personal interest only?
I asked a number of times, especially of a person who was raising funds, where money can go to for research, but I never got an answer. Perhaps I have missed who is doing research, what the research is, and where it is. Is there a place to see a compilation of CC research? I know Johns Hopkins has a number to call when interested in raising money. I would like to know what specifically it would be for.
I know for one, that my doctor is very interested in robotic surgery. For myself, I would like to know about relationship between diet/stress/general health and CC. General wisdom out there is that weight, exercise and stress all contribute to a breakdown in the immune system.
While I am happy that all the money raised for breast cancer has been very instrumental in lengthening lives (my sister-in-law died of breast cancer at age 39); I still get very wistful wishing that we could raise the money in that amount for CC. My doctor said that if all the digestive tract cancers were put together, the numbers would far outweigh those of breast cancer. While there is probably a connection between them, the digestive tract cancers are separated out by location. Has anyone seen progress in the treatment over the years of CC?
Sorry to ramble….wish there were answers!
