Latest messages for CancerCompass discussion http://www.cancercompass.com/message-board/message/all,30495,0.htm Tue, 24 Nov 2009 00:00:00 GMT Tue, 24 Nov 2009 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Scared, we were, too. Then we got mad and started fighting. Four years later, we are still fighting and dad is not only surviving but thriving. Thanks to the amazing Dr. Ahmed Ghany at OHIO STATE and Dr. David Geller at UPMC, he had great collaborative care and surgery and came out great. Dr. Geller can be contacted via email if you aren't in the area: Thomas E. Starzl Transplantation Institute 3459 Fifth Ave. UPMC Montefiore, 7 South Pittsburgh, PA 15213-2582 412-692-2001 Fax: 412-692-2002 E-mail: gellerda@upmc.edu  if this doesn't work, dr. auckerman has helped many through diet when all other options ran out...Dr Glen Frederick Aukerman Northwood-High BuildingCenter For Integrative MedicineColumbus, OH 43221Phone: (614) 293-9777 Email: aukerman.1@osu.edu Weadocm Mon, 01 Dec 2008 00:00:00 GMT Hi-My Mother was diagnosed with stage IV colon cancer in April 2007. She was also very healthy before her diagnosis. I feel for you and what you are going through. After  all that my Mom has been through, I would offer the following advice:1. Do your best to get your Dad into a great cancer facility. My Mom felt that the care she could get locally would be sufficient. She was tired, and didn't want to travel for chemo. After my Mother was given 24 weeks of chemo (Avastin and Folfox 5) at her local cancer care center, she was given a death sentence. They literally told her to go home and get her affairs in order. She stopped taking treatment at their advice, the cancer progressed at lightening speed, and a lot of time was wasted. After hearing a story on my local news, I insisted that my Mom see a Dr. in my city, and her care has been amazing. She was near death when her second round of treatments began at the new facility, and she has now had six months of  reasonably high quality time that she would not have had otherwise.   2. Do as much research as you can, and don't be timid about  discussing what you learn with your onocologist. You need to know as much as you can to get through this. As your dad received chemo, mental confusion is really common. If you are able to understand what the dr. is saying at the appointments, and are able to ask relevant questions, you will be a great help to your Dad. 3.There are clinical trials taking place all over the city. Talk to your onocologist about these programs. Also, you can contact studies directly with information listed through the clinicaltrials.gov website. There is a lot more that I could say, but I think that the advice given here by the people who are survivors is great-I am just an observer. The point is be proactive, and be an advocate for your Dad. Dr's don't know everything, and in our experience, they do not notify you of all options. One Dr. may feel that a treatment is not in your best interest, but that doesn't mean that the next Dr. will agree.     Life_lived_long Mon, 24 Nov 2008 00:00:00 GMT From a Stage IV survivor who was diagnosed in July of 2004.  I was originally told that I had 6 to 9 months to live with treatment, but that I could die at any moment.  I then did a lot of research and went to the right hospital for me. I have been without disease since September of '04.  I stopped all chemo and any treatment in June of '05.   1) what are his treatment options? (types of chemo, new treatments, clinical trials, alternative, etc)They are all different and you will be given options.  I chose to sign up for a Stage II clinical trial.  Most the people on the trial are doing quite well.  2) what is a cancer fighting diet and lifestyle he can do?Before you change anything, talk to your doctor.  My docs, including a nutritionist, all said that my blood was good.  So I wasn't to change my diet with a few exceptions.  I needed to eat a lot of red meat and protein after my liver resection.  This would help my liver regrow.  I was in the hospital, and every day for breakfast I got two eggs, two bacon and two sausage.  I asked my docs if I should worry about my cholesterol.  They told me I could worry about my cholesterol later.  My cholesterol stayed normal.  My liver is 95% of it's original size.  My docs warn me to make sure I tell other docs that I've had this surgery, because it's not easy to tell on my CT.  Also, I wasn't eating enough fat.  Before the residents injected me with fat, the nurses stepped in and rolled their eyes at the docs.  I guess docs want to fix everything by putting it into your IV.  The nurses all got together and bought me a chocolate cake.  I wasn't hungry for it, so it sat for half a day (and warnings from the docs that would inject me with fat) if I didn't start eating it.    I was told that now was the time to eat a lot of junk food, because I didn't want my body to fight starvation and the cancer.I did give up coca-cola.  However, none of the nausea meds worked.  Coca-cola was the only thing that did the trick.  My docs were right, I shouldn't have changed my diet.  I'm half Japanese and I used to drink a ton of green tea, and hardly ate any red meat.  I joined the military and was in great shape.  I'm a girl and I ran 2 miles in less than 14 minutes, I did 68 push-ups in 2 minutes and did 84 sit ups in 2 minutes.  So, I agreed with my docs, that if they could have cured colon cancer with diet and exercise, they would have done it a long time ago.  People like me, it's just bad luck that I get it.  I know some people who are obese and eat horrible food, and they've lived well into their 80's and 90's.      However, that doesn't mean you should eat this diet.  Check with your docs, see what they say.  When you go through this journey, again, you will find that different things work for different people.  We can let you know what worked for us.      3) what should i do to make sure i dont have it (im 19 but i have been feeling crappy for a few months)  Get genetically tested, then you'll know if you carry the gene.  Or, you could get colonoscopies 10 years from when the person was diagnosed, unless it's stage IV.  It takes ten years for a polyp to develop into colon cancer.  Colon cancer is slow growing.  So I was diagnosed with Stage IV when I was 43.  Docs guessed it started when I was 16.  4) and anything else anyone thinks i should know to helpIf your docs give you no hope, go someplace else.  Come here and ask any question you may have.  Remember, we are not docs, but we can give you  options to go back and ask your doc.      Cptmac Mon, 24 Nov 2008 00:00:00 GMT         Well my dad is home now and it is such a relief to have him back. He seems to be back to his normal self, but he naps a little more than normal. He seems to also be very conscious about his diet now and asks me about what he should eat before he eats anything because he knows that i am doing all this research for him. Hopefully he will get his pet scan this week so we can start curing him. Any more advice or suggestions for him about anything so far. Im going to the doc tomorrow to get myself checked out (my chest hurts when i breath in deep and i have faintly sharp pains in my stomach and stuff) Moparman413 Sun, 23 Nov 2008 00:00:00 GMT Thanks, but I am no one's hero, but just happy to be alive everyday.  Life is wonderful.  I just realized that in my last message, I noted it being a year and a half from diagnosis but I actually wrote that information that long ago and have been sharing it with many many people since then.  It has now been 3 1/2 years since my diagnosis.  The fight can be long and hard sometimes, but look for the positives - attitude has so much to do with a positive outcome.  Good luck. cherry42 Sat, 22 Nov 2008 00:00:00 GMT Hear*...not Here...sorry ChancesAreNil Fri, 21 Nov 2008 00:00:00 GMT  On 11/20/2008 cherry42 wrote:Don't be scared, be positive and rest assured that many many people have beat this disease.  I have told my story on many cancer discussion boards, I guess I just want to let everyone know that miracles can happen if you are positive and truly believe - there is much more to all of this than just the doctors and the treatments and attitude is half the battle.  I was diagnosed with Stage 4 colon cancer in April 2006 - I was given 2 months to live - the cancer had completely blocked my colon - gone through my colon and was intertwined all throughout my intestines, up my back bone and into my ovaries.  They opened me up and found that nothing could be removed because of the mass of it all and they removed my ovaries, gave me an illeostomy and sent me for agressive intravenous chemo, followed up with radiation and oral chemo.  Every day I tried to find something positive - not just about the day but about having cancer - whether it was just being able to get first in line for blood tests, a friend coming over for a visit.  I would say if it wasn't for cancer I wouldn't have had that visit.   Although I wasn't necessarily a back to nature or a "whoo whoo" type of person, I went to a naturopath and found what was best for me to eat and vitamins to take.  One needs to find a balance between traditional and non-traditional medicine - being careful to go over everything with your doctor (if they are receptive to non-traditional methods), as many non-traditional methods and basic vitamins can interfer with cancer treatment.  I tried quantum touch (which was incredible)... and put my trust in my health care professionals and God and most of all - I listened to my body.  Inside all of us is a physician and your body has the ability to cure many things if you get in touch with it.  My body instinctively craved many of the foods that they said were good for fighting cancer.   To make a long story short - after my fourth aggressive intravenous chemo treatment after my first surgery I was given a CT scan to check on the cancer and there was nothing there.  It was completely gone - within the span of 3 months.  We continued on with more oral chemo and radiation and a final surgery where they opened me up to remove any remaining cancer - there was none - they reversed my illeostomy - sent away the pieces they cut from my colon to resect the colon and it came back completely clear of cancer.  Although it was not as easy as all of this sounds and the final outcome was positive despite emergency room visits and hospitals in-between - the main point is that the outcome was positive which is where it all starts.  Somedays I question why it was that I was put through all of that and I truly believe it was to give others hope when no hope is there and for that I am truly blessed.  Miracles really do happen every day - some days we just have to look a little harder for them.You are my hero...this is just the message I have been waiting to here...Bless you  ChancesAreNil Fri, 21 Nov 2008 00:00:00 GMT Hi,I'm a survivor of colon cancer...about 1 year now.  I was diagonosed (stage 3B) at 26 years old, now 28.  I had treatments 3 days a week for chemotherapy.  Here are some answers to your questions...1) Treatment optionsI had the IV treatment for chemo called 5-FU (5-fluorouracil).  I believe radiation is also offered and chemo in a pill form.  I don't know too much about the latter forms of chemotherapy but I can speak on 5-FU.  Some of the common side effects are sensitivity to anything cold (water, weather, beverages, etc.).  It's painful to drink anything cold, you can't hold anything cold and I was very sensitive to sunlight.  I had to keep a pair of gloves near the fridge before going in.  To remedy that I would drink hot beverages or cold drinks at room temperature.  I had to avoid sunlight or make sure I had sunscreen or wore a hat and kept my skin covered, which was not comfortable during the summer while I had treatment.2) Cancer Fighting DietI would eat a somewhat big meal before my treatments because afterwards I would be extremely nauseous and weak.  I would drink energy drinks (at room temperature) to give me a boost.  I would also eat plenty of fruit.  Please be mindful that a loss of appetite will occur.  Broth from soup is great as well, like chicken noodle soup.3) What you can do to make sure you don't have it?Talk to your doctor.  Let him/her know what your symtoms are.  Your doctor may have you see a specialist to run some test.  Take any literature or pamphlets that are available in the doctor's office.I hope this helps and I wish the best to you and your family.  Many Blessings.  Take care... Myles27 Fri, 21 Nov 2008 00:00:00 GMT Sorry I didn't reply to your question regarding screening.  The rule of thumb (here in Canada anyway) according to my oncologist is that if you have a family member that has had colon cancer then "all" members of the immediate family should be screened 10 years earlier then when that member contracted cancer.  I am 50, my child will have to get screened before he is 40 years old.  My grandfather died of colon cancer, had I known I should have been screened when I was in my 40's as well. As far as food goes, lots of fruits and vegetables,- I made a fruit smoothie every morning with my vitamins included and probiotics,  broccoli, cauliflower, squash, tuna, salmon, no red meat, chicken, fish, wild meat, lamb, no sugar, (can use honey in tea, and cooked dishes).  Here is my secret - it is long but hope it helps someone:Imagery:          When I rested I would imagine a white light surrounding and caressing my cancer.  I went to a woman who practices Therapeutic Touch/ Reiki/ and Quantum Touch and does reconnective healing. Stress & Conflict:  I avoided it and retreated if I was in it or around it and still do and will continue to for at least 5 years. Positive Thinking:  Everyday I looked for something positive about having cancer, even if it was as little as being able to get in to do my blood tests ahead of everyone else.  I didn’t have to wait.  Every time someone came over to visit that I hadn’t seen in a long time – that was a positive, or someone else bringing my meals all made for me – that was a positive.  I spoke all the time about the positives I never felt sorry for myself.  I looked forward to my chemo treatments and sharing with other like patients that were there.  I made wonderful friends during my treatments and shared a very personal experience with many of them.  Now when I look back on my year with cancer I look back with gladness.  Glad that I was able to witness such extreme kindnesses and the experience and education of really getting to know my body and the capabilities and lengths one will go to survive. Nutrition:  I went to a Naturopath and used many of the recommendations that she suggested which included, no red meat, no sugar (or at least as little as possible) and substituted with honey.   But there again, I listened to my body and even before I went to the Naturopath, I was craving those foods that I found out later were good for cancer treatment and prevention.  Such foods included sweet potatoes, tomatoes, salmon, tuna, cauliflower, etc.  I ate nutritious foods.  You become very in tune with your body when you are ill if you listen to it and my having an illeostomy made it even more so. Water:  I drank it continually throughout the day. Activity:  I sometimes pushed myself to get up and out, but would also rest in the afternoons if only for 20 minutes. Laughter:  I laughed often and surrounded myself with happy people.  Because of my attitude those around me were content in my illness as well and it comforted them knowing that I was smiling. Belief:  I truly believed that I would get well.  I did not read anything about death, nor did I think about it.  I believed in life and my living it to the fullest and I put my trust in my medical professionals.  I did not watch sad shows or the news. Friends & Family:  I encouraged visitors, family and friends to drop in any time.  I spoke of my illness often and with emphasis on making them also believe I would be well and encouraging them to strive towards prevention of this dreaded disease. Vitamins:  I supplemented with probiotics, a good multi vitamin, a B complex and Vitamin D3, and liquid calcium with magnesium in it.  All of this was put into a fruit smoothie that I had every morning.  I would put in strawberries, bananas, huckleberries, or blueberries, honey, orange juice, and sometimes soy milk. Love:  Lots of it from everyone around me. Intuition:  I did what my body said was good for me and acted upon my intuition.  “In every person there lives a wise physician”  and in keeping to that, I listened to what my body was craving and I would have someone go out and get what I craved if I was unable to.   Emotions & Hopelessness:  I believed that I would have no side effects from the cancer, radiation, and chemo and I had little in all circumstances and it has been proven that a good emotional state of mind helps with the complications and side effects of chemo and radiation.   However, there was a moment in my treatment and only one, when my hemoglobin dropped and I literally felt like I was going to die.  My emotions ran amuck and I was truly scared.  I wanted and needed someone with me all the time.  I didn’t know of anyone to talk to about my thoughts so I made an appointment to see a local physician friend that had conquered leukemia.  Although he was very helpful in telling me of his journey it was nowhere near my experiences.  After leaving his office I went shopping and bought some new clothes.  That was the best medicine I could have given myself.  I was a normal person doing something very normal and very satisfying to say the least. I cried more from people’s kindnesses then I did from adverse care or treatment and I stress again that I never felt sorry for myself, or questioned “why me?” Shopping:  I bought new clothes when I was able and bought bright coloured clothes.  I am not usually one that spends money on new clothes or on myself in general for that matter.  Usually I buy my clothes at second hand stores, so the thought of new clothes was new to me.  Alternative Medicines:  I was advised by my Medical Oncologist not to take anything that would adversely react with the chemo and radiation.  Vitamin B was actually one vitamin that interacts and I was advised to drop that during treatment.  There again, I put my trust in my medical professionals, abilities, expertise, and experiences.  They have been through this a whole lot more than I had.  I found a balance between conventional and non-conventional medicine that worked for me and that I felt comfortable with.  I believe the sessions with my Quantum Touch practitioner helped develop good imagery in my body fighting off the cancer on its own.  I met with a Naturopath and took their nutritional advice, not to the level that was suggested, but to the level that felt right for me.  You have to believe in what ever treatment you decide for yourself or the conventional treatment that is required in order for it to be effective.   Spirituality:  Of course this is personal to everyone, but I believe in God and could write a book about the many times throughout my journey and treatment where I was shown that God continued to protect and heal me. Creativity:  Reading, watching in-depth movies, painting (as I am an artist), doing anything creative was almost impossibile.  The chemotherapy treatments left me with what we termed chemo brain and we have since learned that that is actually the term that people use to describe the phenomena which apparently affects a higher percentage of women.  Words come none too quickly, almost dyslexic, or to what I presume dyslexia is.  For example, when I tried to think of the word wallpaper, I said “you know the paper you put on walls.”  Uncanny, but I could not think of the word wallpaper.  In trying to point out a limo that passed by, I said “look!, a long car with doors.”  After a year and six months since my cancer diagnosis I continue to fight “chemo brain”.  I am told that this will get better, but I believe old age will be kicking in shortly and thereby is another positive thing from cancer, because I can explain my odd forgetfulness to chemo brain, when if the truth be known, it will probably just be from getting old.    {0} Mark as read Mark as unread Delete Junk Not junk Print View message source  © 2008 Microsoft Privacy Legal Help Central Account Feedback cherry42 Thu, 20 Nov 2008 00:00:00 GMT Thanks guys i appreciate it, i like reading stuff like your 2 replys. im gunna go to the hospital and see him now, he is doing good and he is finally allowed to drink after his surgery. He has a great sense of humor so i know he will have a very positive attitude throughout the whole thing. Please keep responding to this post of mine with suggestions and stories of hope. I hope to see more stuff here when i get back later tonite. Moparman413 Thu, 20 Nov 2008 00:00:00 GMT  On 11/20/2008 Moparman413 wrote:      Ok so my family just found out that my dad has stage 4 colon cancer that has spread to his liver and stomach. They havent done a full CT but when they went in to remove the "small cancer" that they found in his colonoscopy they say with their eyes it has spread to his stomach and liver. Yesterday we got the biopsy back on the chunk of colon removed and all 15 of the lymph nodes removed were cancerous. He is a very healthy man (no bp problems or chlosterol, or anything else other than the cancer). He is getting his full CT in a few days to see if it went anywhere else. The doc said we will start chemo when he heals from the surgery. So here are my questions1) what are his treatment options? (types of chemo, new treatments, clinical trials, alternative, etc)2) what is a cancer fighting diet and lifestyle he can do?3) what should i do to make sure i dont have it (im 19 but i have been feeling crappy for a few months)4) and anything else anyone thinks i should know to helpill keep this thread up to date on what we find out each day.I am not sure what he will be given since his involves the stomach.  As for the diet, you should ask the oncologist because he may have to stay away from certain foods due to bacteria problems. With mine I tried to get as much rest as I could.  They told me that I should rest when I felt I needed to and not overdo it.I also kept a small notebook to write down questions I had for the doctor and for keeping notes.  It helps when so much is thrown at you at one time.My gastro doctor told me that my daughter should have a colonoscopy at around 35 she is 25.  If you have any symptoms discuss them with your family doctor and let them determine if you need any testing.I have CT/PET scans done every 6 - 8 months to keep mine in check.  I had liver and ovary involvement.  I have been 3.5 years since diagnosis and am off of all treatment.  I have had clean scans for the past 2 years.There is so much hope with new research so hang in there.I hope this is a help and please keep us in touch as to your dad's progress.Mel mspan Thu, 20 Nov 2008 00:00:00 GMT Don't be scared, be positive and rest assured that many many people have beat this disease.  I have told my story on many cancer discussion boards, I guess I just want to let everyone know that miracles can happen if you are positive and truly believe - there is much more to all of this than just the doctors and the treatments and attitude is half the battle.  I was diagnosed with Stage 4 colon cancer in April 2006 - I was given 2 months to live - the cancer had completely blocked my colon - gone through my colon and was intertwined all throughout my intestines, up my back bone and into my ovaries.  They opened me up and found that nothing could be removed because of the mass of it all and they removed my ovaries, gave me an illeostomy and sent me for agressive intravenous chemo, followed up with radiation and oral chemo.  Every day I tried to find something positive - not just about the day but about having cancer - whether it was just being able to get first in line for blood tests, a friend coming over for a visit.  I would say if it wasn't for cancer I wouldn't have had that visit.   Although I wasn't necessarily a back to nature or a "whoo whoo" type of person, I went to a naturopath and found what was best for me to eat and vitamins to take.  One needs to find a balance between traditional and non-traditional medicine - being careful to go over everything with your doctor (if they are receptive to non-traditional methods), as many non-traditional methods and basic vitamins can interfer with cancer treatment.  I tried quantum touch (which was incredible)... and put my trust in my health care professionals and God and most of all - I listened to my body.  Inside all of us is a physician and your body has the ability to cure many things if you get in touch with it.  My body instinctively craved many of the foods that they said were good for fighting cancer.   To make a long story short - after my fourth aggressive intravenous chemo treatment after my first surgery I was given a CT scan to check on the cancer and there was nothing there.  It was completely gone - within the span of 3 months.  We continued on with more oral chemo and radiation and a final surgery where they opened me up to remove any remaining cancer - there was none - they reversed my illeostomy - sent away the pieces they cut from my colon to resect the colon and it came back completely clear of cancer.  Although it was not as easy as all of this sounds and the final outcome was positive despite emergency room visits and hospitals in-between - the main point is that the outcome was positive which is where it all starts.  Somedays I question why it was that I was put through all of that and I truly believe it was to give others hope when no hope is there and for that I am truly blessed.  Miracles really do happen every day - some days we just have to look a little harder for them. cherry42 Thu, 20 Nov 2008 00:00:00 GMT       Ok so my family just found out that my dad has stage 4 colon cancer that has spread to his liver and stomach. They havent done a full CT but when they went in to remove the "small cancer" that they found in his colonoscopy they say with their eyes it has spread to his stomach and liver. Yesterday we got the biopsy back on the chunk of colon removed and all 15 of the lymph nodes removed were cancerous. He is a very healthy man (no bp problems or chlosterol, or anything else other than the cancer). He is getting his full CT in a few days to see if it went anywhere else. The doc said we will start chemo when he heals from the surgery. So here are my questions1) what are his treatment options? (types of chemo, new treatments, clinical trials, alternative, etc)2) what is a cancer fighting diet and lifestyle he can do?3) what should i do to make sure i dont have it (im 19 but i have been feeling crappy for a few months)4) and anything else anyone thinks i should know to helpill keep this thread up to date on what we find out each day. Moparman413 Thu, 20 Nov 2008 00:00:00 GMT