Curious? Anyone out there who is considered cured?
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Kathy…thanks much. But, what I think makes this discussion board so successful is due to the incredible people joining in. Often I wonder, does CC only affect the nicest people? I have yet to encounter someone not likeable on this board. The outpouring of help and compassion by its members is unsurpassed and leaves me in awe.
Some of your comments sound very familiar to me: elevated liver enzymes,
Lipitor, and as in your case my husband’s cancer seemed to have been there for at least two years. And, that story has been repeated on this site, many times over. I wish for science give us the answer as to what causes these cell mutations.
All my best wishes,
MarionMarion and Betsy….thank you so much for staying in touch..I’m still in the game of “if I live x number of years more my girls will be halfway through high school…or “if I live 8 years more, they’ll be through high school. I know I have to stop this and live each day with them as fully as I can. We have 5 grown children and 5 grandchildren (and our new year’s present was the news we’ll have a 6th early August!). We adopted our two youngest girls, sisters, 3 years ago although they’ve been with us almost all their lives. After such a long court procedure, during which they went through a very difficult time, it has not seemed fair to me that they should have to go through losing me. That’s another issue I need to put aside and get on with it. They are wonderful girls and I hope I’ll be able to deal with adolescence at the same time as dealing with cc!!!
Betsy…I have started (last month) with a psychologist who does a lot with guided imagery..after 5 sessions we’re just getting into more of that. I will start acupuncture on Tues. with a woman who has been doing massage and who is a 2x breast cancer survivor who decided second time round not to do chemo and is at this point cancer free). I have also been working on changing my diet. I’ve lost almost 40 pounds (which I could stand to do!) and don’t want to put any back on, but also want to eat very healthily. My XMAS presents from our grown children indicated their desire to help me in that area! A juicer with a great cookbook; lots of green tea with an electric tea kettle; another cookbook which focuses on many different veggie recipes). I’ll also be doing yoga which I had to postpone because my incision has taken a long time to heal…mainly a reaction to the inner stitches..one of which popped out beginning of Dec. but the surgeon thinks this could be an ongoing problem for awhile. I fully believe that the stress of the adoption procedings (which were very intense) brought on this..which I’m sure many will dispute..but it was such extreme stress that went on for a number of years (yep! I’m going to write the story “some day.”) and the doctor thinks the tumor was growing for 2-3 years before diagnosis (the elevated liver enzyme count showed up 18 months before but the doctor thought it was due to the lipitor I had started on…the next annual physical I had gone off the lipitor so then she seriously started looking at other causes)…Back to the stress, though..I do think it’s a factor in attacking our immune systems so I’m trying deal with my reactions to stress .. but how to de- stress when you’ve got a cancer diagnosis is a challenge in itself.
I have been so impressed and bolstered by the amazing strength and resilent spirits who are on this board. What a gift!
Again, my best wishes for your continued health and I will look forward to reading your posts.
Marion..I’ll get your connection to this web soon. I’m new and have to go back over posts, but you mentioned your son, so I know you have been through a lot and feel a huge gratitude to you for keeping up this website and offering so much support to others…..
Kathy
Kathy…..Our Jeff lived with this disease for ten years, plus. Personally, I know of an elderly man who also has had this cancer for 12 years and one more person doing rather well 8 years post diagnoses.
As Betsy said, there are many more people out there, who continue to live with this cancer, but we don’t hear from them. Although, this disease occurs rarely in comparison to other cancers it has however, gained much momentum in regards to research and treatments. I believe that the statistics will prove a longer time of survival, but it takes many years before the supporting data can be evaluated. Presently we are looking at more aggressive treatments and multiple, combined, therapies. Amongst other promising treatments to look for in the future is personalized medicine. Here therapies are being developed for each individual patient to receive the right medicine at the right dose. Therefore, we do not give up on hope. It drives us.
All my best wishes,
MarionHi Kathy,
I had my surgery at the Cleveland Clinic in Ohio. I did not receive adjuvant chemo because, at the time, my doctors felt there was not enough evidence to support chemo would prevent a recurrence. I believe there is now more evidence supporting adjuvant chemo.
My lifestyle has changed considerably. I’m still dealing with bile duct issues from my surgery 2 years ago. I was a very active person and did dog training/pet sitting as a profession. I don’t have the stamina to do that job anymore. I spend a lot of time on the computer, watch movies, read, hang out with my kids, dog and cats. I’ve decided to go back to school in the Fall and get my masters degree in social work. I try to eat more organic foods but don’t spend too much time worrying about what I eat. On good days I can walk at least a mile.
I’ve had counseling and I take anti-depressants (but I took those before cc). Both of these things help me tremendously. I do worry about a recurrence. I wonder if my kids will outlive me. Having cc boiled life down to its very essence for me. But I’m so incredibly lucky – I have the Cleveland Clinic 30 minutes from me, doctors that have gotten to know me very well, excellent health insurance, an amazing spouse and children, sister, brother, great girlfriends.
How about you? What have you found to “get you through the night?” How has your life changed?
BetsyBetsy,
That’s wonderful news…what have you been doing to deal with it? Do you mind if I ask where you had surgery? DId you have chemo?
Did you make changes to diet? lifestyle? I’m still in initial stages of dealing with this (about 6 months)…still trying to get my head wrapped around it!
My oncologist/surgeon also gave the 5 year mark…
Thanks for answering.
KathyI only know one person who is 10 years out from being diagnosed. But I do think there are people out there who are “cured”. They just aren’t here talking to us. My oncologist said if I made it 5 years without a recurrence, I should consider myself cured. I am a little over 2 years plus without a recurrence.
Betsy
We hear from people who have clear scans…fabulous news..I’m wondering if there is anyone on this site that considers themselves actually cured? Anyone out there five years from diagnosis or surgery for whom there’s been no recurrence? That would be REALLY good news! Do you KNOW of anyone who’s considered cured or “no evidence of disease” five years out? I only know of one man who is 11 years out.
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