1

(11 replies, posted in General Discussion)

Thanks for all your kind words.  I'm enjoying being back into photography and you've encouraged me to keep going. I'll put some more pictures up soon.  And of course it's a great diversion from trying to decide what to do. 
Actually I'm giving myself a medical break.  After 5 procedures in a month it's time for no procedures, no docs, no appointments for a few weeks.  Just getting out in the beautiful fall weather, taking pictures, time with friends, loving life.
-Peter

2

(1 replies, posted in Thought for the Day)

I know our local hospital, Dartmouth Hitchcock, is struggling already.  They don't/can't replace people who leave or get promoted.  This leaves some docs, already stretched, w/o their nurse of PA.    From folks I know who work there I know there is real concern.

Greetings all,
I've been remiss in not keeping up with the board here.   I think of everyone here all the time and have been dealing with my own ups and downs of this disease.
I now have a blog which I'm using to keep friends and family more up to date with what is happening for me.  If you're interested it is available at:
http://pagehill.ning.com/profile/Peter

I have not been able to keep solid foods down for about 2 months now.  What follows is my most recent post on this blog.  A search on this site for Dr Jenkins will turn up a number of hits with more information. 

love and courage to all
-Peter

------------------------------------------------------------

his is a long post. If you'd like the short version you can just read the first paragaph.

Dr Jenkins feels my recurrent disease is slowly progressing as it has been for a few years now. The difficulty eating is a result of this progression but any decision on surgery to relieve this symptom is entirely my choice. While there are no guarantees I have lived well with recurrent disease for years now and there is no reason to believe I should not be able to continue this for some time although the current symptom with food and liquid will get worse over an unspecified time.

My unpolished notes from today's visit:

Roger
Oct 1, 2008

Decisions are mine now.

Common sense and experience support that the blockage is the moss, spilled paint, tumor that Roger has suspected since at least 2006.

He reminded me that I was having some gastric distress since 2006. His notes from my visit then confirm this. He feels this is just the slow extension of this problem. He does not buy that the cancer has morphed to non-differentiated but that it is the same, slow growing, differentiated tumor moss that I have dealt with (WELL!) for years now.

He was careful with his words but felt that the Hitchcock docs were experimenting unnecessarily. He stated that the cholangiograms were unnecessary and unsupported. In his opinion there is no need for a cholangiogram unless the patient is badly jaundiced which I was not. I endured 3 of them.

He also stated flat out that he does not believe I have sorosis of the liver. I do have portal hypertension and this is what is driving the DHMC /Berk assumption of sorosis.

Nor does he feel that the end is near although we can never know. He does not believe any investigatory scopes are worth doing. His gut, experience, & observation of 100's of patients does not require additional invasion of my abdomen.

So surgery, and all process decisions, are in my hands. He worried that the docs at Hitch were pushing me unnecessarily toward a decision that may not be right and is only mine to make.

1. I have been living well with recurrent disease for a considerable time and there is no reason to believe I will not be able to for a good while longer. For the first time he related the story of a patient of his who is 15 years out. Never done chemo, recurrent disease for most of that time, 3 surgeries to remove uterus, bladder and something else but still some (restricted) but decent quality of life. I do not have to decide quickly unless I get to a point where I can't maintain the weight I'm at now or can't pass anything. He would then do immediate surgery. No prior tests or extra visits. Just call Julie (his assistant ) and she gets me admitted immediately.

2. Roger was not especially concerned about risks with by-pass surgery. It requires good surgical procedures, staying away from known trouble spots like my varicies and experience with the surgery being performed. He talked about staying focused and not making the one little mistake that can lead to another mistake etc. I liken this to the risk of winter or high altitude mountaineering. It isn't always a major event that causes tragedy but rather a small mistake that can lead to another in a situation where recovery from a mis-step is difficult if not impossible. Moral: Know and trust your fellow climbers and only venture out with those you do trust. Stay mindful and very present.

3. Recovery: A successful surgery would keep me in the hospital about a week and then there would be the recovery time at home. Could be up to a couple of months to get back to a strong and vigorous state. Also the stomach doesn't always just accept that there is a new pathway for food. Sometimes this takes a while.

I talked about not feeling prepared to make the decision. My quality of life is quite good most days now. Being able to eat and still have this quality of life would only be better. And in fact it could be much better as I could gain weight, strength and vigor.

On the other hand I don't want to give up what could be a couple of good months if my life expectancy is only a few more months. Roger repeated that only I can decide. I should take care not to allow myself to be pushed into something by the Docs who know less then I about how I feel and perhaps what is happening with me. There are no guarantees of course but, in his opinion, no reason to believe my life is close to the end either.

He also said that often we know when it is the right time. Like a woman having contractions knows it is time to give birth to her baby.

I expressed my reluctance to consider using chemo again and he supported this decision. He noted that I'd tried it, that it may well have helped me but that he would not encourage me to do it again now.

So it's up to me. Sure would be nice to eat pasta, sure do enjoy so many of my days right now.

4

(6 replies, posted in General Discussion)

Greetings All,
I've been pretty quiet lately.  Dealing with steadily increasing GI problems, unable to keep food down, as well as other life changes.  We now have an idea what the problems are so I thought I'd check in with an update.
---------------------------------------

EUS Procedure today went well and was worth doing.

Good news first.  My pancreas and spleen appear to be in good shape and doing well.  They also pumped what was left in my stomach which has given me temporary relief from the nausea etc this evening.

They did find small ulcers at the top of the stomach near my esophagus and took biopsy's to be sure there is no tumor behind it.

They also found a large mass, almost certainly malignant tumor, either at the base of  my stomach or into the duodenum.....I don't remember which.  This is out for pathology but the only question seems to be if it is a metastasis of my cholangio or a new cancer.  It appears to be fast growing.  I will be presented to the tumor board at DHMC and they will give me their recommendations.

I've not 'let all this in' yet nor do I now have any idea of the choices I'l make to deal with it.   I'll get more information soon I hope.  It is a relief to finally understand what has caused my GI distress and inability to keep any sold food down.   I will only drink liquids now while contemplating what is next.

It feels good to be home and sipping on a hot broth.  There is no immediate crisis,  rather it's a time to learn and think about options.

-Peter

5

(3 replies, posted in General Discussion)

Go miracle man! 
On the communication issues.......sounds pretty common to me.   My approach is that you have to be the hub of the wheel for your own health care, or have a support person who can do it for you.   I've had the same problem and have insisted that the Doc's talk to each other and followed up with qustions making sure it happened.  To be fair I only do this when I judge it to be critical to may well being as of course they are all overloaded with cases and too much to do.   

Jeff,   have you made a dent in the lobster population?

-Peter

6

(38 replies, posted in General Discussion)

Thanks for keeping up Kris.  Yes,  my thoughts, prayers for Barb and her family.
-Peter

Wow Jeff.  That's some good news mixed in with your next adventure.   I've heard rumor that Lobstah' is a great cure for whatever ails you so be sure to partake!

The Eagles had no idea of what they were setting in motion by the way.

-Peter

Thanks Marion.  Something I need to research more.

Thanks Margie!   We love good news stories.

Jeff,
You remain an inspiration!
When are you headed to Maine?  Are you driving?

I've been a bit crazy and haven't checked in here lately as much as I like to.  Among other things I've been remodeling a basement.   Maybe we should add carpentry to the list of alternatives eh?

-Peter

moncap,
Cholangitis, actually called ascending cholangitis, is an infection that occurs where the tiny bile duct that now replaces the common bile duct is sewn direction into the intestine.
When caught early, your Dad should take note of how his body signals infection (headache, low grade fever, tingly skin perhaps), antibiotics usually help.  Often patients will be on a low dose of prophylactic antibiotic or, on their doctors orders, keep antibiotic available for when an infection comes on.
In my case I have found that mucus producing foods like dairy and coffee tend to increase my chance of infection.

Hope this helps.

-Peter

While Ascities can be caused by CC it can be a side effect of other problems as well.   As CC patients many of us have compromised livers, sometimes as a side effect of the build up of toxins (bile) that may have not been able to drain as needed.  This liver damage can also be a cause of ascities. 
Jeff's advice about a low salt diet can be helpful.  I've also had good luck with diuretics.  In my case Spriilactone used in concert with Furosemide.   And when it's really bad having it drained does bring relief although it can sometimes return quickly.
If you use visualization as a tool try standing or laying quietly and visualize a waterfall inside your body.   See the fluids filling the waterfall and draining from you into the earth.

-Peter
-Peter

I took Xeloda for 8 months.  I did have to cut the dose back as well as I pretty much got all the possilble side effects.   This started 3 1/2 years after surgery but, in combination with other treatments and changes, it contributed to holding my recurrence at bay.  I'd do it again.
-Peter

If I have this right I believe today is the day Jeff marks as his 9th year of not just surviving but truly living as he's endured all the struggles of cholangio.

Kudos Jeff.  You give us the ligth of hope.  Your faith, wisdom based on experience and compassion have enriched all our lives.

Watch out Hawaii......he's going to work his magic on you next!

-Peter

Awesome Kris!  This is such wonderful news.  You rock girl.  (and I still think it was the purple hair that turned the tide)
-Peter

16

(12 replies, posted in General Discussion)

My metastasis was to the lining of my adbomen.  My onc at the time, who has experience with over 200 cases of CC, said it presented  like ovarian cancer and that they had seen this before.  He started using a new marker for me,  CA125, which was highly elevated.  Fortunately for me the combination of treatments that I used worked, or perhaps it was just my getting a long straw.

If Bob has ascities this can sometimes test positive for cancer.  I wonder if that is what they are referring to as 'floating tumors'.

I struggled with nausea but did not have to use prescription drugs.  The insurance reaction sounds typical but so unfair to me.  I hope they agree on a substitute that works.  I've posted this before and I recognize it isn't acceptable for many but I relieved my nausea with marijuana.  It was amazingly successful.    VT does have a medical marijuana statute but is also very lenient in cases like ours.  I didn't bother with all the paperwork for the medical statute.
Some of my distress also came from a very acid stomach.  I used over the counter Ranitadine (sp?) for  while but much better was pure plum extract my Chinese medicine practitioner gave me called Ume.  It has no other ingredient other then a paste like substance boiled down from the plumb.  Bitter beyond any pucker factor I'd ever tasted but worked very well for me.

My two cents.  I hope your husband finds comfort and that the treatment shrinks the tumors.

Courage,
Peter

17

(8 replies, posted in New Developments)

Love it! 
Can you post us a picture of you in the hat?
Actually, having said that I'm not sure if attachments work here.
Rick????

I used marijuana to relieve nausea when I was on chemo and it did help with appitite as well.    Balance is important as any toxin in our bodies is filtered by our livers which are already stressed both by the disease and  by treatments.

-Peter

I also had no appetite, no interest in eating although intellectually I knew I needed to.

My wife made me smoothies in a blender which worked pretty well for me.  My favorite fresh fruits, sometimes yogurt, sometimes vanilla ice cream (!), rice or soy protein powder (watch for constipation with these), spiralactone, and milk or juice base.   I could just take a little at a time but I could spread it out all day.   


Even when I started to eat again I ate 5 or 6 small meals a day.   Find the foods that appeal to him.   I agree, this isn't the time to worry about the food pyramid.


-Peter

20

(2 replies, posted in Chemotherapy)

Hopefully this will mean that patients having trouble getting insurance to cover Avastin will now have  better luck.  Approval was for Breast Cancer according to this article but this should provide a solid argument to go up against insurance companies.

http://www.businessweek.com/technology/ … op+stories

-Peter

There's also the Kubler Ross stages.  How's it go
Denial
bargaining
Depression
Anger
Acceptance

something like that.

22

(8 replies, posted in New Developments)

Hi Kris,
Yup,  I do it too.  Although I've never had the hutzpah to admit it publicly.....

Pancreatic and CC are both adenocarcinomas.   And the AC's = badguys!

Has anybody out there seen and read "Crazy Sexy Cancer Tips" by Kris Carr?  Actually, it's a film as well.
http://www.crazysexycancer.com/

Slanted more toward women but she has a great attitude and it's a uplifting light read after all the pubmed slogs we try to get through some days.

-Peter

23

(8 replies, posted in New Developments)

I missed this when the article was first published a few weeks ago.  Perhaps a new chemo with some promise.   Others here may know more but a search didn't turn it up in any posts I could find.

-Peter

http://money.cnn.com/news/newsfeeds/art … 351190.htm

24

(2 replies, posted in Thought for the Day)

YES!

I eat them regularly.  My strong second to Jeff's microwave cautions.