Partners even more likely than survivors to experience fear and worry over long term, study finds
by Whippleschmiple on Fri Apr 13, 2012 03:59 PM
Ca 19-9 may or may not be a problem but I really wish they would encourage chemo and radiation then chemo after whipple even if no proof it works as I think some do much better and longterm not just months. If God forbid you had an issue, depending on decisions, don't rule out more treatment, and would get more than one opinion even if at top center and I have read some with a few small liver tumors have gone on to get resected and be fine. Sometimes they do that with colon cancer and sometimes with excellent results. I had my whipple 1 month after yours. I had some symptoms, asked for ca 19-9 but it was less than 10 so I wait for scans in July and presume ok. I also wish in general we would all think the best not the worst, about 50% overall get recurrence with ampullary and clearly less or more depending on stage. The disadvantage for all of us is the rarity, the lack of good studies, the lack of incentive to study us as it is rare and for that reason you would think regular pancreatic would have tons of research done on it. At rates of 3-6 per million we are very rare indeed. I know a 9yr survivor, a 15 ish year survivor and heard of two 20 yr survivors and there are many out there just going on with their lives. good luck with scans and at my age if I had more problems I would fight for an answer. J
by kscee on Fri Apr 13, 2012 05:08 PM
My CA19 has been as low as 3. Johns Hopkins really pushed the chemo on me as a "just in case" measure but when I read the stats, I declined. Now that I have new cancer activity I might still decline. There are too many ways to cure cancer, they are not expensive but they are not easy.
On Monday I will ask to have my tumor typed to see which chemo would have the best chance of success.
by Whippleschmiple on Sat Apr 14, 2012 05:25 PM
I had intestinal type so got 5FU with radiation and capacetabine (xeloda which turns into 5FU/flouracil ?sp) and if it had spread would have gotten oxaliplatin too. For pancreatic tissue types it is maybe gemzar, more likely folfirinox or other combos sometimes adding egfr inhibitors (for pancreatic but if pancreatic tissue type or combo may consider that). There are trials with more modern combos. ALSO I did a combination of conventional and unconventional. I had massages and reiki and would use accupuncture to stimulate immune system if had money to do so. I also completely altered my diet largely following Anti Cancer diet by Dr. Servan Schreiber, am semi-vegetarian, no meat, no regular milk,... Someone on this was trying large doses of vit C etc, Captain Stoney or some name like that with I believe pancreatic cancer but not sure how he is doing.
IMPORTANT- for especially anyone else getting a new diagnosis of ampullary cancer, THE STATS are often ancient and not adequate. For some, the added treatment MAY make the difference but it is up to each patient though I don't think we can follow the stats. I had an aggressive tumor (either poorly or moderately to poorly differentiated) with perineural invasion, lymphatic invasion though clean nodes, clean margins, and small stage 1B. My tumor board voted against other treatment after surgery but my second opinion said despite stats, his gut feeling was to do it so I did. I am also almost two years along and well. I think exercise may make a difference with intestinal type (studies showed help colon, breast and prostate to significantly lower recurrence). I do not think patients of any peri-ampullary cancer should go back to old habits/lifestyle as something caused it. I think we need to rethink diet, water (using filtered/reverse osmosis), add green tea, some specific spices, avoid dirty dozen vegies, cut some foods out of diet, add others (ex. garlic cloves, onion family...), largely plant based diet, etc. I developed my views based on ACS meeting handout, books,... I think support groups add to chance cure or longevity. I think it is the whole being on many levels but I also believe in least toxic options of conventional unless toxic ones only options... We all develop an opinion based on our beliefs and experiences but I worry about people listening to the ancient hopeless stats. My oncologist warned me the stats were very old. I had noticed the long term survivors (stages 2 and 3) I knew did radiation with at least bookend chemo and some additional radiation so I followed my own study and later my tumor board docs ALL admitted if it was them or their wives they would have done more treatment. I wish for all of us that the stats were more accurate. We are the future stats through boards like this and some who do further treatment will get recurrences but the oddity of ampullary is even stages 0,1, 2,.... about half get recurrences so my attitude is if relatively well what did I or we have to lose by doing more treatment and we were able to use lesser toxic for me. This is such an odd cancer and I think some docs act like won't be possible recurrence if early, the one exception from what I read was stage 1A well-diff, with no high risk features like I had. GOOD LUCK!!!! Maybe read Gerson,... which I do not know if does or doesn't work.
by clcampbell on Wed Apr 18, 2012 06:09 PM
I too have not been through the chemo nor radiation, by doctors request. Now they have found a mass on my thyroid, I have been assured that it is nothing, I still wait with baited breath for the results to come back.
by clcampbell on Wed Apr 18, 2012 06:15 PM
My whipple was on Feb. 14th 2011. No Nodes were invovled, no chemo nor radiation. I have gained back about 40 of the 70 that I have lost. I feel so much better over all. Aside from the surgery area I cant complain. I was 46, now 47. I has been one year 2 months and three days since the surgery, I am now beginning to play basket ball with my 15 year old.
I have more confidence in myself now than I ever have before, more to live for, and wanting to do it right.
by kscee on Wed Apr 18, 2012 11:05 PM
My advise, get real serious with diet, real serious. My doctors told me diet didn't mater and, after almost two years, they told me Monday I had 8 to 10 months to live (yes, that is what I said) - and this is Johns Hopkins I am talking about.
Also, ask around about enzimes. They took your gall bladder which makes bile to add alkeline to the digestive mix as it enters your duadenum. OOPS, they took your duadenum. The body is amazing in how it can compensate but try not to be the tough guy, give your body some help. Surgeons and oncologists don't seem to know about this.
I have really felt great for the last 18 months so don't be fooled and go back to your old bad habits (I assume you are a type A as well).
by kscee on Wed Apr 18, 2012 11:19 PM
a book: Cancer Free by Henderson and Garcia, get it from Amazon NOW. Lots of info you should consider. They followed a mass in my abdomen for 12 months, did steriotactic radiation last August and Monday 4/15, they told me I will die in 8 to 10 months. Now I am free to employ the weird stuff in this book. I will trust that God and God's natural substances in the book will do the trick.
by Whippleschmiple on Thu Apr 19, 2012 02:35 AM
Ken, I am sooo sorry they would say that and after so many don't think diet may play a role. Is is in your liver, elsewhere? If only in a few spots in liver, or lungs maybe cyberknife, maybe surgery for the spots, if more spread than 1-2 more top opinions fast. I had two top opinions and they were very different opinions. When did your ca 19- 9 start going up? I had whipple one month before you did. Did you have symptoms and what where they? I periodically have nausea, low cramps and then it lets up for many weeks or months and ca 19 9 remains very low, could simply need omeprazole again or some other digestive solution. You also have nothing to lose by going strict with diet, maybe acupuncture, maybe gerson, maybe other theories ---I said I liked anticancer diet book by Dr. Servan-Schrieber. There may be a trial? Get creative and fast, maybe call CTCA???? They don't likely see much ampullary. Lance Armstrong and many others told no chance and they are fine, depends on how much of a fight? Don't give up on conventional either.
by clcampbell on Thu Apr 19, 2012 12:03 PM
I have not gone back to the old habits, I have increased my vegetables a litle at a time. In the past, no vegetables. I have changed my diet as well. The doc is goping to put me on some enzimes.
My out look has been positive and remain so. I will keep you in my thoughts.
by kscee on Thu Apr 19, 2012 01:45 PM
the CA19 went from 60's to 189 in two months. The tumor isn't in any organ, it is in my body cavity wrapped around my SMA (Superior Mesen Artery) - Hopkins Docs' agree it is not operable and it has already proved to be totally resistant to Radiation. They tell me thet Chemo would double my life expectancy, not interested. I am fine with all of this. I am very optimistic about God and natural medicine. Get the book I cited. There are things in it everyone shoul do.
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