April 24, 2013 at 12:40 pm #69935
Have you had a Reiki session before? My dad used to get them every week and he loved them! He was sceptical of the benefits at first, but after his first one he was hooked and they helped him loads! Hope you enjoy it! Hope your exercise sessions go well and yep, having a plan is a good idea!
GavinApril 24, 2013 at 12:37 am #69934
Pat: No apologies necessary. We have the big C. Tomorrow I have Reiki Therapy session. In Syracuse the Y has a program LIVESTRONG for cancer survivors. Exercise program for free. Will be signing up and starting June 4th. I feel having a plan is a good thing.
Best of luck.
GreggApril 23, 2013 at 12:35 pm #69932
Gregg, I truly apologize for my confusion on that earlier post. I would not have used the examples I did otherwise. I need to concentrate on my train of thought when typing, I am very slow at typing and my thoughts outrun my fingers very easily. I hope you are doing well, and you are getting close to your first scan after surgery. I hope you are getting around by now pretty well and I have been thinking about you. Your second opinion and your plan of action is great, and you made me realize how sloppy I have gotten on my program to keep this cancer in check. I have made an appointment to see my gastro doc in May and I will have him order a scan. My best odds are to get right on it if it does rear its ugly head. I hope all is well with you and please let me know how things are, take care, PatApril 18, 2013 at 2:03 am #69933
I remember coming home from surgery, and one difficulty I experienced was constipation from the percocet. I stopped using the pain pills the second day I was home and began using cannibis the seventh day after surgery, and I have used it regularly ever since.I did support a few people who had this cancer and I did not share with them that cannibis was a part of what I did.I did not want to tell them because it is illegal here and the negative rap it has gotten my whole life makes it hard for me to advocate. I kept it to myself and now I feel bad I did not share that detail about what I have done. None of them did well and maybe that is a relevant detail as to my survival.When I wrote about not being afraid to die, I meant I did not stress out about that possibility, and allowing fear of the unknown to cause anxiety is the most harmful thing you can do. Believe it or not we all have to focus on the positive things in life and I went back to work in just 10 weeks after surgery and getting back puts your body into its usual routine. Its hard just getting out of bed at first and taking care of your resewn stomach muscle is critical as muscle does not heal or grow back, know early on that a muscle that was cut and restitched together is just that, a stitched up muscle, it will form scar tissue around the stitches but they are what is holding it together so be careful how you tax it. It will strengthen and feel better as time goes on but don’t plan on being a sit-up champ from here on.I wont be doing any swim suit photo shoots myself as my scar resembles a mercedes benz emblem, every surgeon is different, one gal I knew said her resection scar resembled a lexus emblem. Whatever scar you have, you must be careful not to lift anything heavy and go easy the first year, slipping on ice and tensing up to catch yourself is the worst. More important than anything, a bright young surgeon on the team of doctors that did my resection, Dr. Mackey said every cancer case is different so dont be discouraged by the statistics, and if you pull a small hernia in your muscle repair dont let anyone mess with it, it requires a skilled hand to stitch a stomach up correctly like yours and mine. After seven years mine is a little bumpy but it is beautiful in my eyes. Sorry for the long post but I am trying to remember how it was, My doctors werent very encouraging early on, and they informed me it can return. I was told by one my odds for reoccurance was 50-50, so I guess it was heads. However as time went by my onc and I, Dr. Pelley at cleve clinic became very good freinds and my 6 month visits were pleasant for both of us and as years have now passed we hug when we see each other. Let me know how you do with your massages and such, I wanted to try that stuff but when I went back to work it was hard to find time … I am cheering for you Gregg so take care,PatApril 8, 2013 at 11:23 pm #69931
Pat: Oncologist appt today for second opinion. I live in Syracuse,NY and have heard lots of great info about this group. De. Scalzo confirmed what I learned at Cleveland Clinic but he had suggestions on how to move forward and what to do if cancer comes back. Found out that it mets still called cholangiocarcenoma and not receptive to chemo. This group treats the whole person: integrated Oncologist, wellness center, massage, reiki dietician. I feel very good about appt and my future.
GreggApril 6, 2013 at 4:02 pm #69930
Gregg there are a few key things I did that helped. You are what you eat is true. eat a salad every day..avoid processed sugar, greasy food, fast food, do something that increases your pulse rate every day ( by that I mean get off the couch ) teach yourself to put your mind off your condition, one support group moderator I know said ” a cancer patients subconcious mind is always trying to solve your problem.” She said over 50% of cancer suvivors experience some sort of insomnia. I did and you need your rest. Do things you enjoy that relax you, go fishing or to the zoo, animals brighten everyones day, The first year I drank an herbal tea called essiac, this might just be snake oil or placebo, my daughter who was my key support person and a blessing came up with the stuff, and even if it is a mental thing, it helped I used cannibis to help my appetite, it helped me sleep, and it helped me take my mind off my health issues.It is slowly becoming legal for people like you and I. It is still not legal in my state but I found a way. those are the key ways I have tried to keep this cancer from starting over.I was never afraid to die either, what happens is going to happen, and after a while I began to ask myself “why was I left behind here? what is it I am here to do? I search every day why and I feel I am close. Take care of yourself and dont let lifes rat race wear you out, PatApril 5, 2013 at 11:33 pm #69929
Pat…… I have Oncologist appt this coming Monday for second opinion in Syracuse,NY. This group treats the “whole” patient and looking forward to discuss potential options. I am open to discuss anything that might help me live a long healthy life.
GreggApril 3, 2013 at 11:20 pm #69928
I will try to find it if I canApril 3, 2013 at 7:51 pm #69927
A great link about cancer, cells, genes etc. Well worth a read.
GavinApril 3, 2013 at 7:09 pm #69926marionsModerator
Pat…It is of most importance to distinguish that some studies suggest something to be true wheras other studies prove for something to be true. You would want to look for peer reviewed studies and for clinical trials to validate initial findings.
At present no genetic link has been established for our disease.
A bit about cancer:
Cancer starts when cells in a part of the body start to grow out of control. Cancer cell growth is different from normal cell growth. Instead of dying, cancer cells continue to grow and form new, abnormal cells. Cancer cells can also invade (grow into) other tissues, something that normal cells cannot do. Growing out of control and invading other tissues are what makes a cell a cancer cell.
Cells become cancer cells because of DNA (deoxyribonucleic acid) damage. DNA is in every cell and it directs all the cell’s actions. In a normal cell, when DNA gets damaged the cell either repairs the damage or the cell dies. In cancer cells, the damaged DNA is not repaired, and the cell doesn’t die like it should. Instead, the cell goes on making new cells that the body doesn’t need. These new cells all have the same abnormal DNA as the first cell does.
People can inherit abnormal DNA, but most DNA damage is caused by mistakes that happen while the normal cell is reproducing or by something in the environment.
MarionApril 3, 2013 at 6:20 pm #69925pcl1029Member
What is the name of the article indicated” there are 57 genetic varieties of cholangiocarcinoma”? I would like to know too.
In the beginning of liver cells development the line of distinction between hepatocytes and cholangiocytes is not very distinctively clear. as the following article said both of them are “arise from the same bi-potential progenitor cells”.
God bless.April 3, 2013 at 2:36 pm #69924
there is a website called rarecanceralliance.org. I did a lot of reading in their ‘trials, studies, section and there are all kinds of medical studies from around the world that one was about a genetic study of different samples from around the globe. another fascinating report was about the same type of genetic study which found the cells in cholangiocarcinoma tumors in bile ducts are actually liver cells that morphed into bile duct cancer cells, the only time in medical history so far a human cell morphed into another. I used to get lost in those medical study reports… PatApril 3, 2013 at 5:38 am #69923marionsModerator
Pat….would love to hear more of the 57 genetic varieties of this disease. Would you mind and share with us a bit more?
Thanks and hugs,
MarionApril 3, 2013 at 12:29 am #69922
Hello gregg, I too had a very similar situation, intrahepatic tumor,resection and gall bladder…no lymph node involvement, 60 percent of my liver removed, and my doctor, mind you it was 7 years ago, recommended as yours did, to forgo chemotherapy, he said if it would make me feel better mentally that I am doing something,he would prescribe it, which I decided against, and in my case it made no difference, he said after a major surgery like that your body’s immune system is on full alert with all the healing going on the best thing I could do for myself is eat healthy and let the building blocks be available for your liver to regrow in just 4 to 6 weeks time.there are 57 genetic varieties of cholangiocarcinoma worldwide known to medicine and not all behave and respond to chemo, some do.make your own decision and like many cancer after treatments it is insurance as some doctors put it. Good luck with your decision on this just take care of yourself..PatMarch 20, 2013 at 2:40 pm #69921
Welcome to the site. Sorry that you had to find us all but I’m glad that you’ve joined us here as you are in the right place for support and help, and I know you will get loads of both!
Thats great that you were able to have a resection and I hope that you are recovering well from that. And good to hear you say as well that you are seeking a second opinion on further treatment. I do hope that you get some good news from your app and please let us know how you get on.
Keep coming back here Gregg and know that we are all here for you. Looking forward to hearing more from you.
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