Topic: It's been 26 months- now what?

It has been 26 months since my husband's last treatment. He had brachytherapy in Nov'06.Today he went for his 3 month checkup and bloodwork and even though everything remains the same as far as a lack of visible tumor the Docs seem to think he should have surgery in order to secure a real "cure". They are completely convinced his klatskin tumor will recur and are convinced that it most likely will not metastacize because it hasn't yet after all this time.They think that removing all of the scarred bile duct and surrounding liver will give him the best chance of a "long" life ecspecially since he has no mets after over 2 1/2 years from diagnosis.We understand what they are saying and the truth is Tom can't continue to have stent changes every two months without some serious complications eventually. At least after the surgery he won't have to deal with stents.Our problem is that he is doing so well right now and feeling so good, do we really want to take the chance of major problems after surgery? Even though everyone here has been told that the only cure is surgery, that's what all the Docs say, after 2 1/2 years on this website I haven't really seen where surgery has been all that successful either. It seems like a majority of people have had surgery only to have tumors recur within months or even weeks sometimes.My husband has truly been one of the biggest miracles of all because they actually tell him he is in remission and he never was resected. I sometimes wonder if the surgery causes cells to wander and speeds up recurrence? The Docs say no but then they said he would be dead by now so I guess no one really knows for sure. Anyway I think we are going to play wait and see and not do anything until next fall unless there are real signs that the tumor is returning. He will undergo an ERCP under anesthesia on the 26th and they will take more photos and possibly a tissue biopsy. That should show for sure exactly what we are dealing with. What a wild ride this cancer is. You never can think you are truly cured because it never seems to want to give up it's hold on you. Because of the grim statistics the Docs never want to be too positive either because they know the odds.I'm extremely grateful for Tom's success so far- we have been unbelievably blessed. There are so many others that have lost their fight in the 2 1/2 years I have been on this site that reality really hits home when I go through the family blog list. I started on here when almost all of them were alive and read all of their struggles. It is truly heartbreaking and scary. My prayers are with all of my old friends that are still fighting on and all of our new ones just starting their battle.Lets all pray for a cure!! Mary

Re: It's been 26 months- now what?

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????

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: It's been 26 months- now what?

I think you're right Lainy, about the second opinion(and everything else for that matter!!). I told Tom on the way home today that I would go down on the 26th to Medical Records and get them to send his records to at least 2 other Drs. that would give their opinion.I'm thinking Dr. Jenkins from the Lahey Clinic and a Dr. from Duke? Does anyone have any other suggestions of places that would review records without an appointment?I really think he would go ahead and have the surgery at Ohio State if he decides that's what he wants and others concur that he should, to be "safe". I don't know. This will be a really tough decision. There are just so few people to compare results with that we really can't know for sure what to expect!!His gastroenterologist admitted that he had never seen anyone do as well as Tom with the treatments he had.If he didn't have the stent issue I think it would probably be a definite no to surgery at least at this time.We'll see in a few weeks! Take care Lainy, I'm glad to read how well Teddy is doing! Keep up the good work.   Mary

Re: It's been 26 months- now what?

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

Re: It's been 26 months- now what?

Hello,

I tend to lean towards the same theory as Irene based on the experience I had with my husband's illness. He had no symptoms until about 2 months before he passed on.  Up until that time he only had a few aches & pains & minor fatigue. At 62 you just take that as old age setting in. In his case, by the time he was diagnoised it all went so quickly that anything that was suggested was not an option because he was losing so much weight & was too sick & weak. My understanding is that he probably had CC for years, but as it was contained in the bile ducts and had not spread & he seemed to be very healthy all his life, it was not found & the symptoms did not present at all until it was too late. He lived a normal healthy life until the very end, so I have to believe that in his case, treatment earlier would not have help, but could have actually shortened his life or atleast made him very ill at times. Unfortunately, I will never know that for sure as we did not have the luxury of being able to make that choice. It was taken out of our hands.

That said, every case is different and everyone should seek out more opinions & then make the decision that they feel is best for them.

So this is my 2 cents worth for what it is worth!

Along with everyone who has had to deal with CC I will be praying for a cure so that others will not have to go through what all of us have & many still are dealing with. And yes, as Lainy stated, it really does redefine your entire life.

God Bless Us All
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

6 (edited by JeffG Mon, 05 Jan 2009 21:05:58)

Re: It's been 26 months- now what?

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.

Take it to the Limit,One More Time! (Eagles)

Re: It's been 26 months- now what?

Jeff, I never tire of saying this but....you are amazing!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: It's been 26 months- now what?

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

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: It's been 26 months- now what?

Hi All,
   Jeff I love your attitude and I agree 100%. It just seems the more invasive the treatment( surgery,etc) the more damage can possibly be done. I realize surgery is the best initial treatment in most cases but I do wonder if it is the only cure. My husband has been such a rare bird and responded so well to his chemo and radiation that I sometimes wish I knew whether he would be doing as well if they had managed to have the resection initially. I received an e-mail back from our surgeon and he said he is in no hurry either.He said he wouldn't even do the surgery unless there was absolute proof that the tumor had returned so thats good. We're all on the same page at least.The oncologist is the one pushing more because he is completely convinced it will be back.
  Jeff, I told Tom it's time to start adding a few new things to his routine too as far as supplements and exercise etc. The oxygen therapy sounds interesting and makes a lot of sense. I really believe in the alternative ideas ecspecially to improve your quality of life. Tom had VERY extensive radiation and he would not be in the shape he's in without all of that but I really believe the supplements and his attitude have helped tremendously. He just says that he doesn't think it will come back and thats that!! Hey he knows his body better than anyone so hopefully he's right~~ Take care Jeff, we are all rooting for you to continue your fight. You are a true inspiration- actually all of the patients blogging on here are! I'm amazed at how strong everyone is! Best wishes to all. Lets hope we will have more funding available for new research with our new administration. We need to find a cure and more affordable treatments and create jobs at the same time too! Heres to 2009!!!   Mary

Re: It's been 26 months- now what?

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.

Re: It's been 26 months- now what?

Joyce,
    Following Butch's experience actually was an eye opener for me because it showed very vividly that it isn't just the surgery that is so difficult but also all of the complications that may arise after. I think that's what we're most afraid of. Right now I think all surgeons would probably agree with us and our surgeon and just have a wait and see attitude. Unless there's evidence of recurrence there is really no reason to be in a hurry. Our oncologist kind of got us in a tizzy on Mon suggesting that something should be done right away.Obviously that's really not the case. What I'm hoping for is further research into using pig ducts to replace damaged human ducts for cases like my husbands due to scarring etc. There is some research being done. Take care of yourself!! Mary

Re: It's been 26 months- now what?

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

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: It's been 26 months- now what?

Thanks Kris,
   It IS a great place to be this far along after diagnosis and an unsuccessful resection attempt. Who would have thought? The Docs are basically in the same position they were two years ago kind of wondering whats next and just deciding to wait and see. I don't know why we have been so lucky but I am thankful EVERY day! We're anxious to hear how your tests have come out. Have you heard anything yet?  Keep us posted! Take care.  Mary

Re: 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

Re: It's been 26 months- now what?

Hi Jan. I can agree and connect with everything you have said. Teddy is 3 1/2 years post Whipple and his CC returned last April where the duodenum used to be. He had 5 weeks of radiation over the summer and Dec 22 he had 3 Cyber Knife Treatments. As far as we know the monster is shriveling up and dying! This month's LAB work was good and we see the ONC tomorrow. Every time we go to the ONC we look around and feel so lucky! Its so true that no matter how bad you feel you have it, there is so much worse out there. And yes, we try to enjoy every day and we get lots of family visiting from out of town because like you say with this CC who knows! Here's wishing Charlie to stay on the good side of the road.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.