Not only do we have to be MDs, we need to be chemists, too.

Duke

2

(8 replies, posted in Members' Cafe)

We are all "Chosen" people, for one task or another.  Many times we don't know what that task is while we are here.

The key is how we fulfill the Choosing.

Blessings of Chanukah to you and your family.  (Not sure what the accepted saying is, but you know what I feel.)

L’chaim.

Duke

3

(8 replies, posted in Members' Cafe)

Lainy -

Happy Chanukah!

I was surprised by your menu, but the fried chicken fits the "oily food" idea.

Enjoy the family time and be happy.  Know that your cousin is with you in spirit.

Duke

4

(5 replies, posted in Members' Cafe)

In any case, "Life on Mars" was a good UK series (far better than the US version).  Not to mention a decent song.

Duke

I was on gem/carbo for 7 months and experienced tingling in my toes.  After I went to gem only, in about three months the tingling had reduced significantly.

Duke

6

(1 replies, posted in Members' Cafe)

Lainy - say it isn't so.

Duke

7

(7 replies, posted in In Remembrance)

Carl -
I know that someday my wife will feel the same as you.  If I could, I would tell her then that this is something I need her to work through.  Even though I could not be with her physically, I would be with her spiritually.  Our kids need one parent to carry on,  To be there when they get married - to play with grand children when they come.  She has so much yet to do with her life.  Maybe that will be your new contribution - providing support to other surviving care givers.

Thank you for your past efforts and I look forward to what the future has in store from you and for you.

Peace

Duke

8

(4 replies, posted in General Discussion)

I went from carbo/gem for about seven months, to gem alone for about seven months.  We floundered for about three months before starting on FOLFOX6 last week.  Platelets continue to be limiting for me.  Not only is the chemo hammering them, but my spleen seems to be trapping them.  A double hit.

Have you had genomic testing done to maybe guide you into a trial?

Other internal links to detailed posts from Percy.  A wealth of information, slow reading, but definitely worth your time.

http://www.cholangiocarcinoma.org/punbb … 877#p70877

http://www.cholangiocarcinoma.org/punbb … 198#p57198

Fight hard against the desperation - live life to the fullest you can - treat every day as a miracle and a gift - make the most of it.

Duke

I think I've come across a previously unsuspected trait in the family - "naughtily nice" - and, to make it worse, they are unrepentant.  Of course, in Lainy's case, maybe not unexpected.  But we had such high hopes for Gavin, which is why his branch is across the pond to keep it untainted.  Oh well, "naughtily nice" is the new standard.

Duke

10

(26 replies, posted in Good News / What's Working)

That's my girl.

Duke

Thanks for all your support.  It's time to get back to better things.

O frabjous day!
Callooh!
Callay!

Guess who had
a great
birthday?

My daughter and her BF came out.  Had  a wonderful visit, great lunch, and saw a good movie - "Interstellar".  Interesting plot with excellent computer graphics.  Many shots were reminiscent of "2001: A Space Odyssey".  Not bad considering 2001 came out in 1968.  It truly was ahead of it's time (and not just by 13 years).

Have we all got our lists sorted by naughty or nice?

Peace.

Duke

I had to talk louder than he did a couple times, just to make a point.  Even told him not to be condescending.  He said he wasn't, just that he knew more than I did. 

Overall, might have been better off with a doctor who knew nothing and recognized that and sought help, than one who thought he knew enough.

In the long run, not sure how much difference it would have made, but this underscores the NECESSITY of getting an informed second opinion quickly.  Patients can't think of it as just a good idea.  Folks, this is our lives we're talking about, not just some theoretical abstraction.  Don't settle for second best - demand and expect excellence.  I know I spent more time researching the purchase my last new car than I did picking an onc and treatment center.  I'm probably not alone in this.

Getting a second opinion is in our power.  But how do we get these doctors educated, especially when they think they already know enough?  Maybe they did 5-10 years ago.  It was obvious he had written me off as a dead man walking, but how do we get to others who might be more receptive?  "Rare cancer" should not be a death sentence.  It sounds like what I have interpreted that some outside the US have said that if you are not curable, they treat the symptoms, hope for the best, and concentrate their time and energy on those they might save.

If this wasn't so personal, it would almost be funny.

Thanks for listening, my friends.

Duke

Just found out today:
My niece's lung cancer is Adenocarcinoma, she had a scan today, the tumor is shrinking, good news. Not so good news is she has a tumor on her brain, they are waiting for confirmation of treatment from her medical insurance, hopefully the first of the week and have a gamma knife procedure soon after that with good results expected.

Scary thing is that her mom and I are the tall, skinny blondes of our generation, niece is the tall skinny blonde of my nieces and nephews, and my three kids are tall, skinny blondes.

Met with radiologist on yesterday.  I wanted to explore options with him.  Started out positive.  He said he had all the time I wanted to answer my questions (more on that later).  He let me talk for about 10 minutes then started his spiel.  He said that there was a tumor board at the center and they reviewed my treatments.  They have treated CC patients in the past.  A few other things that no one had taken the time to explain to me even though I had specifically asked about them.  The long and short is that I was a poster child for CC chemo treatment and I owed my life to my onc.  “You look great.  No one looking at you would suspect you have terminal cancer.  You have lasted a lot longer than most.”  He continued by saying that doctors must first do no harm and that no doctor would perform any surgery on me because they would have to replace not only my liver, but both lungs.  Resection was out of the question because both lobes of the liver were affected and the liver would never recover from complete removal of one lobe and massive resection of the other.  These would be worse than chemo on my body – I probably would not survive.  He referred to a non-existent web site that listed the standard order of treatments and surgery was at the bottom of the list.  He referred at least twice to my visit to Dr. Alberts – I could tell from his body language he did not take getting a second opinion outside his group well. 

But wait – it gets better - really.  When I asked why no one had told be about what had been talked about behind the scenes and not discussed with me, he answered (roughly), “We believe that patients don't need to know all that.  It worries/confuses them so we just tell them what they need to know.”  Don't feel left out, he dissed this site too.  “I don't know where you are getting your information from, but they don't know everything we know.  Trust us.”

After about 30 minutes one of his assistants came in and reminded him of an appointment.  He left for about 10 minutes saying something about “Can't keep a patient waiting.”  I was strongly tempted to leave while he was gone, telling his secretary that I didn't want to take time away from his patients, but did not.  After he returned, in a final attempt at lightness, he ended by shaking my hand and saying, “Make an appointment for a year from now and we will talk again.”

Duke

14

(26 replies, posted in Good News / What's Working)

Julie -
Somehow, you have to regain your confidence.  You have fantastic insight to give others, you need to listen to yourself, too.  Passing on the dinner is a great example, so you still have it - what would you say if I told you I was worried this would be my last Christmas?  Now listen to your advice and follow it.

Duke

15

(13 replies, posted in Members' Cafe)

Depending on how high the fat content, you might need to drain the grease before adding the tomato product.  I dice and brown onions to add to the mix.  Cover and simmer for 20 minutes to cook in the flavors, stirring occasionally.   Since I lather on the mix heavily, I usually eat it with a knife and fork instead of adding a top and eating it with my hands.  Lightly toasting the bun adds a little texture.

Two more "must have" ingredients.  An adult beverage of the brewed variety and a football game - either style.  Best enjoyed with a seasoning of friends and laughter.

Duke

16

(19 replies, posted in General Discussion)

There are two things I like about having a plan:
1.  I know where we are going and what's going to happen next - like having a map instead of just driving aimlessly and hoping you get where you want to go.
2.  I can follow our progress and know what's going to happen next.  I'm all for spontaniety, but it has it's place.  This is not one of them.

Duke

17

(19 replies, posted in General Discussion)

There is debate about which is better - CT or PET or MRI.  Would they consider doing the other type of scan?  Maybe a sonogram/ultrasound?

How often are they planning the blood work?  If you decide to go that way, get them to commit to a definite set of action numbers - if this parameter reaches xx, then we will do xxxxxxxxx.  The doing could be a scan, more frequent blood work, or something else.  Or maybe a couple parameters need to reach an action level, not just one.  Being an engineer, I always wanted action numbers in advance rather than making it up as we went along.  Takes away all the "discussion" in the heat of the moment - everyone has agreed what to do and when.

Porter - I read your first posts.  You have come so far and are so much stronger than you were a year and a half ago, it's incredible.

Read your "signature" - "Hope, love, strength...2013 and for the years to come, Porter."  This looks to me like a little speed bump, certainly not what you had last year.  Your standards and expectations are so much higher now than they were because you have been to the top of the mountain and know what that feels like.  You are by no means back in the valley.  The team has a plan, I'd say follow the plan.  They are not closing their eyes to your condition.  As for the holidays, I was overjoyed last December when my scan showed that my main liver tumor had shrunk to 10 cm - it's a matter of perspective.

Action Plan:
1.  Let your surgeon review the scans and hear what she has to say.
2.  Ask whether other scan types may help define any conditions.
3.  If she has no issues, set up a schedule for blood work and what to do if certain levels are reached.
4.  Enjoy your family and the holidays.
5.  Get your next scan in February and act accordingly.

Duke

18

(13 replies, posted in Members' Cafe)

Lainy -
Slight problem.  Both the Pack and the Cardinals are in the NFC.  Only one will get to the Super Bowl.  The Browns have an outside chance to win the division but Sunday's game game against the Bengals is a must-win.

Duke

Well, it's 3:45 in the morning, but I've frequently had trouble sleeping after a chemo, so this is not a surprise.  I have to get used to the fact that I am wider than normal with the pump on my side - keep bumping into things.  And which side do the cats want to lay next to when I'm on the couch?  Moving it to my stomach doesn't help because that is their favorite spot - warm and soft.

Cillie - you see that you can always come here for support.  Your third paragraph matches me pretty closely, although I try to offset my "black" humor with outright silliness at times.  If I can get someone to smile, it's a good day.

Duke

20

(15 replies, posted in Introductions!)

You have to be aggressive, especially if your onc has little or no experience with CC including the distinctions between intrahepatic, perihelar (Klatskin), and distal (extrahepatic).  Do your homework by researching on this site; you may have to lead your onc, radiologist, and surgeon to possible treatments.  Don't let them get off with the answer of "That's not the standard treatment." or "I've never used that treatment." or "Insurance won't cover that."

Here is a link to probably the definitive summary of most of the treatment options out there today.  It is long, but well worth your time.

http://www.cholangiocarcinoma.org/punbb … 198#p57198

http://www.cholangiocarcinoma.org/punbb … 43&p=2 may also be of help.

Duke

If the port was installed right and is working right and they are keeping it clean, then it's the right answer.  I had mine installed last Thursday and my first treatment with FOLFOX6 was today.  The nurse said the surgeon did a good job on the install.  She has seen many patients where it was not lined up properly which resulted in major headaches for the nurses.  (The cancer center stopped sending patients to that hospital.)  Tonight is the first night sleeping with the pump. 

Duke

As a patient, this is one of my worst fears - that eventually things will deteriorate so much for me that I will hurt those I love who are trying so hard to help me.  All I would hope for at that time is their understanding and that they remember the good times when I was myself.  I'm sure that is what your mum would say if she could express herself fully.  You summed it up - be strong and do the best you can.

Peace.

Duke

23

(2 replies, posted in Members' Cafe)

Being curious with too much time on my hands, I looked at posts from January, 2006.  Probably some of the first ones on these boards.  The more things change, the more they stay the same.  I would recommend it to anyone who wants to get a true perspective not just on CC but on the importance of this site.  I only spent a short time there but will go back.  Thanks to those who pioneered this work of love and hope.

Duke

24

(3 replies, posted in Members' Cafe)

I had my medport inserted last Thursday.  They did not start the anesthesia until I got to the OR.  On the way two nurses were wheeling me through the halls on a gurney when they opened a set of doors down a long hall that had a large window at the end.  I exclaimed, "Oh no!"  "What's wrong?" one nurse asked anxiously.  I raised my arm without the IV, pointed to the window, and answered "The light!  The light!  I see the light!"  One nurse whispered, "Always go towards the light."  Not being content, I continued, "Something must have really gone wrong in surgery if both of you are here with me."

Smile.  It makes people wonder what you know that they don't.

Duke

25

(19 replies, posted in General Discussion)

Porter -

If you can, banish the fear and the feeling of being alone.  We are here for you and you have your faith to sustain you.  As for fear, you've faced worse and come through it.  You'll come through this, too.  Your team will be working to get you whatever treatment might be necessary, so let them do their job.  Your contribution as part of the team is to stay strong and fight this, mentally and physically.

Peace,
Duke