peter
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I agree about the stents. The dark unrine is a pretty sure sign of jaundice.
My external drains were annoying and prone to infection but never painful.-Peter
Well, I gotta tell ya Jeff…..this ain’t Hawaii. We did have the most snow in December on record for that month. I love to XC ski and it was outrageous. Then it started to rain. I mean the critters were lining up hoping for an Ark. So now that it’s at least cooled off a bit again we have some snow cement holding down the leaves from blowing around and another 6″ forecast for tonight/tomorrow. Perhaps it will be winter again. You’ll get a grass skirt and maybe Marion can arrange some Lederhosen for me.
-Peterps. Man, was that ever off topic! Felt good.
Well, you’ve got me pegged Jeff. And that’s a mighty fine CA19-9 number if I do say so. Does the direction continue down?
I’m still visaulizing the pemican and hawiaan shirt……on the beach no less. Then I get Kris walking up with blue hair and asking for bite. We’re all off the deep end. You gotta love it after almost 9 years……way to go!
-Peter
dzkh,
I’m sorry you had to find us but this is as good a place as I know to get the help and support you need.First and foremost get a second opinion on the surgery. Surgeons w/o CC experience almost always say a Klatskins is not resectable, but some can and will do it successfully. I’ve written this same response before. Please use the search function at the top of this page and enter ‘second opinion’. You will find help and some good advice.
Especially be aware that you don’t have to travel long distance to get feedback from some great surgeons. Get copies of your labs, scans, radiology reports and physician reports. Get on the phone to hospitals with CC experience and ask if you can send your information to see if they will consider your dad for surgery. It isn’t always possible but for those of us fortunate enough to get it surgery it provides the best hope for extended quality and quantity of life.
Someone must take the lead and manage this disease, the doctors, even the best ones, won’t do it for you.
I had successful Klatskins surgery over 4 1/2 years ago.
All the best to you, your Dad and family.
Courage!
-Peter
Oh Kris……you are indeed on the roller coaster. How I wish I could answer some of your questions. One simple thing that makes sense to me is that you are correct that feeling sick and feverish can very well be the result of low level infections associated with the inadequate drains.
You don’t mention anything about blood tests. Do the labs show your markers, CA19-9 especially, moving either up or down. This has so far seemed to be the most reliable indication of cancer activity for me. CAT’s and MRI’s have never shown the cancer in my case and my understanding is that this is often true.
If they are considering you for a liver transplant that indicates to me that they don’t believe you have active cancer. At least in the US I don’t think you can get on the list for a liver if you have cancer in that region of the body. Someone may correct me on this, I’m speaking from hearsay and the words of just one doctor.Courage Kris……be strong.
We all love you-Peter
I’ve heard some good things about CTCA and looked into for myself. I opted not to pursue it for cost reasons hoping to find something my insurance would help with. I’m very interested in how this works out for you. The combination they offer is hopeful.
-PeterDear Richard,
Such a loving tribute to a man I wish we all could have known. His spirit clearly lives on in you.
I can only send my love and prayers to you and your family. Your help to me will never be forgotten and I think of your Dad each I meditate on the characters you helped me to find and get right.
-PeterCA19-9 seems almost more art then science in my discussion with Docotors. My experience personally is that the direction of change is a good indicator of the course of my disease and is supported by my clinical self assessment and how I feel.
I have had liver docs tell me that they believe CA19-9 can fluctuate with Ascities and/or liver disease which are both common side effects for CC. The ascities may, or may not, be cancerous so they postulate that it doesn’t necessarily indicate cancer activity.
Regardless, a drop is good and Jeff’s ponderings make good sense to me.
-Peter
I agree with Jenny. Stents, often inserted via an ERCP, are commonly used to relieve jaundice. Surgery is often done very soon after the stent is inserted. In my case it was 2 weeks.
The search for alternatives may be difficult. When it is the physical mass of a tumor blocking the flow of bile the mass must be removed or bypassed. Tumors have been known to shrink and disappear, sometimes as the result of ‘alternative’ treatments, but sadly this is not the normal case.-Peter
Caroline was indeed an inspiration. Man, did I want her team to win that bowling trophy!
I agree with Jeff. She was always doing so much, truly engaged in her life.My love and prayers to you all,
PeterI had a device with a ping pong ball in in tube and I was suppose to blow hard enough to hold it up at a certain level. Sounds like the same concept. I never got pneumonia either.
Kirs,
Poems, Prayers and Promises to quote John Denver. Perhaps the question isn’t ‘if’ but rather ‘how many’ kids.Merry christmas
-Peter
G,
Great point about the mental toxins. That’s a key but can be the hardest to obtain on the down days.Onward!
Peter
G,
I’ve used milk thistle as well, fish oil I also think is key for overall immune system help. Also juiced veggies are good nutritionally but not as easy to digest as steamed veggies according Chinese medicine. The idea is that the extra nutrients in the raw veggies may be lost with our difficulty digesting them well. Steamed or cooked veggies are much easier on our systems and therefore the net gain is better.
I think one of the most important things with our livers is to try not to tax them any more then necessary. The drugs and chemo that many of us have had are sometimes toxic for the liver and just compounding that part of the problem but hopefully help in other ways. I am on a bile salt drug, Ursodiol, which does seem to have helped my liver numbers.
Other then trying to eat well I do try to avoid toxins which the liver must filter out. I miss my glass of red wine but that’s surely worth it. Even tylenol is known to be hard on the liver. It’s all a question of balance in this game and we all have to weight the choices in lots of ways.
Not much specific help here I know. As always we all want the non existent silver bullet. Be well, think good thoughts, love lots!-Peter
Kris,
You’re a marvel. This is a nasty bump in the road but you’ve already shown us your strength and courage and it’s going to serve you now.
Of course, cry your heart out……we all would and do at our low times but there is good life ahead you. For one thing heaven isn’t ready for someone with bright red hair so we’re all stuck with you.-Peter
