It’s been 26 months- now what?

HELLO ALL
MY CHARLIE IS ALMOST 2YRS POST WHIPPLE. SYMPTOMS BEGAN 3WKS PRIOR TO ERCP THAT SHOWED DISTAL DUCT TUMOR HIS RECOVERY FROM SURGERY WAS UNEVENTFUL WAS PLAYING GOLF 7MOS LATER WITH WEIGHT RETURNING PATH REPORT SHOWED CLEAR MARGINS WITH NO NODE INVOLVMENT OUR SURGEON SAID NO RADIATION OR CHEMO THAT A SURGICAL CURE WAS THE ONLY CURE TREATMENTS COULD CAUSE HIM TO BE SICKER THAN HE NEEDED TO BE WE WENT WITH THAT TRACKING THE CA19-9 WE STARTED TO HAVE INCREASE ONE YEAR POST OP WHEN CA19-9 WENT TO 2000 THE PET SCAN SHOWED A TUMOR IN THE SURGICAL BED CONNECTED TO THE PANCREAS WE HAVE SINCE HAD 33 RADIATION TREATMENTS AND 6WKS OF 5FU A PET SCAN LAST WEEK HAS SHOWN A DECREASE IN THE SIZE OF THE TUMOR EVEN WITH THAT WE STARTED A FOUR MONTH STINT WITH GEMZAR AND AT THAT POINT WE WILL DO ANOTHER PET SCAN AND GO FROM THERE I HAVE LEARNED THAT THIS DISEASE IS NEVER CURED ONLY MANAGED GOD HAS GIVEN ME THE GRACE OF EVERY DAY IS A GIFT…TELL THE ONES YOU LOVE HOW YOU FEEL AND WHEN I GO TO THE DOCTORS OFFICE AND LOOK AROUND I SEE HOW BLESSED WE ARE JAN

Mary,
You and Tom make me smile. I LOVE let me repeat LOVE the fact that there is this dilema. I am sure eveyone is scratching their heads wondering how your Tom is managing this and not quite knowing what to do. Normally when people are questioning what to do it is because things are not going well and you are the exact opposite. It is so uplifting and wonderful.

Best of luck in your decision. Whatever it is, I am sure it is the right one for you.

Kris

Marylloyd,
My two cents, for what it is worth – get more opinions. I am afraid to say anything else, as I want the best thing for your husband, and that MIGHT be the surgery. However, you know that Butch had surgery in July, and he was gone from our world in early October , and I do fear that surgery spreads cancer in many cases. So – I think other Doctor’s opinions would be invaluable here. I wish you both the best in any case.

Joyce C.

marylloyd….it will be interesting to see as to how other physicans will approach this situation. I suppose that Tom and you are not in any hurry to make a decision. The stent replacement although, quite uncomfortable has not shown itself to be problematic, so far and I assume that there has been no timeline given as to when this could change. I would love to see Tom’s case being evaluated by as many experienced CC physicians as posssible simply because, as you have mentioned, what will they compare it to? Has there been someone else in a similar situation? Most of all though, I am so very happy for you and Tom for the great reports, and his general wellbeing with this cancer. This will not be an easy decision to make but, seems as if you are not in a hurry and therefore have plenty of time to hear out the opinions of other experts.
Hugs
Marion

Hello All,

Here is my 2 cents worth as well. Cancer cells occur between 6-10 times in a persons lifetime.When the person’s immune system is strong, the cancer cells will be destroyed and prevented from multiplying and forming tumors.
When it comes to chemotherapy and radiation, poisoning of the rapid-growing cancers cells begins. At the same time healthy cells in the bone marrow, gasro-intestinal tract and can cause damge or further damage to the liver,kidneys, lungs, etc. Initial treatment with chemo and radiation will often reduce size of tumor. As I have learned in my case specifically, if I had not taken a few breaks and refused certain treatments I would not be here today. Prolong use just causes a toxic burden on the bodies immune system and I would have ended up dying from some kind of infection or other complications.
In my opinion initial surgery yes. But a doctor cannot tell you your cancer free not even microscopically. It’s up to your immune system to take over from there. Even surgery in my case caused it to spread to another site.
I believe cancer is a disease of the mind ,body, and spirit. You have to be proactive ans positive in spirit. You have to learn to relax and enjoy life. You have to be forgiving and have a loving spirit to reduce that acidic enviornment.
Lastly, you have to eat healthy avoid acidic foods. avoid sugar, red meat, and regular milk. Change your eating habits: raw carrots ,chicken, fish,beans,soy milk, whole grains, eat alkaline based foods.
Finally, Cancer cells cannot thrive in an oxygenated enviornment. Deep breathing exercising. Oxygen therapy is another means of to destroy cancer. Now that I’m on hospice at home with an oxygen machince, I will use it to fight my cancer with the above listed things. Suggest others who are on at home hospice utilized the oxygen machine to your benefit. I don’t know if my immune system has be compromised to far and beyond for a come back ,but hope is in the air and I’ll give it a try. Alot of this infor came out way back, supposively from some one at John Hopkins and to the best of my reculection was denied by someone. But somehow it fits my picture of trial and errors of the passed 4 years. If this don’t work, I’ll just get weaker as time goes by, until I need Shower chair. But I will make good use of hospice and all the oxygen therapy I need.
Those of you who have known me from almost the begining of this site, understand this is a slim chance of turning around my immune system, but as I say I’ll give it a whirl and take it to the limit one more time! I’m still driving and going ut to eat, but it was felt I should be on hospice so I agreed. Of course I’m limited where and I often and have to have someone with me just in case. Don’t give up on surgery ,radiation, Cyberknife but also don’t give up on your own God given immune system and try a little faith. Stretch out the treatments and listen to your body and other little whispers. I continue to pray for a cure along with Mary and everyone else. Mary and Tom, I wish you the best on your choice. It’s never easy.
God Bless You All,
Jeff G.

Hi,
I guess I will offer my two cents — though not sure it is even worth that much.

My tumor was first found (incidentally, no symptoms) in April 2008, and I was finally diagnosed in July 2008. I had a failed surgery in September 08, and since that time, I have chosen no treatment whatsoever. I consulted with two oncologists: one was and remains insistent that I immediately begin chemo; the second doctor felt as if there was merit to my decision to do nothing for as long as I remain “healthy.”

At this time I remain without symptoms, except fatigue. So little is known about this disease, but I believe that as time passes, doctors are going to become less inclined to advocate for chemo/radiation immediately in cases where the person has the tumor but is not yet symptomatic.

I recognize that I am on borrowed time, but based on everything I’ve read, I do not believe that — at least in my case — chemo would be of benefit in the long or short term.

So there — two cents worth…

Peace to us all,
Irene

Well, Mary, I guess the only thing we know for sure about this cancer is that we know nothing for sure!!! I can relate on the stent changes. Though at this time Teddy’s are for the kidney I think at 76 he would rather loose the kidney than go in every 2 months for a stent change. Decisions, decisions. Just a suggestion, why not just get one more opinion? For sure, CC redefines our whole life, yes????