1

(6 replies, posted in Grief Management)

Margaret -
I'm sure this person meant well and was trying to comfort you the best way they could.  But, until you've been there. they cannot understand.

"Broader comprehension of reality."  Maybe we need to weave that in earlier when new people join us.  It really covers a lot of territory.

Duke

2

(9 replies, posted in Introductions!)

I think you have some people who mean well but are not aware of what it is like to have cancer.  Of course you are going to cry.  I was diagnosed 19 months ago and still have moments where tears are the only way I have to express myself.  As far as making your children more "resilient", xxxx.  My mother died from cancer when I was 15.  The only thing that got me through the next week was anti-depressants.   That's where my "strength" came from.

Considering you got off to a bad start, you are doing great.  Did they say why you have to have chemo?  From what I've read here, adjuvant chemo is not unusual (my CCA is non-operable so I have no personal experience).  Why the long wait - availibility of resources?

You are not alone in Australia.  There are several of us down there.

Two bits of advice.  First, find out the experience level of your onc.  There is NO substitute for experience.  Second, have him outline his total plan for you, with all the options, and "if-then" combinations.  I learned from personal experience that these two are essential.  You, and your main care-giver need to know what is going on and know where you are.  Doctors are human and some have larger egos.  Also, find out who your onc is going to to check his treatment.  You want to make sure he is not flying solo.  It would be a great idea to get a second opinion from an onc who is not part of this hospital system.  I don't know how practical that is, give the size of Australia and I have no idea what your insurance system is like.

As Lainy said,  you are now part of a large family.  We have our warts and shortcomings, but the one thing we have in abundance is love.  Welcome to the family Cousin.

Duke

There must be more here than published.  I wish they had included info on the remainder of the 45 patients so we could see what their survival rate was.  Two deaths out of eight surgical patients seems high.

Duke

4

(28 replies, posted in Members' Cafe)

I never thought of it before, but that car shows one way to decrease the foot print of a parked car and increase the parking density.  Don't think it will catch on, though.

I doubt if using the cable worked to pull the car out, wrong angle - looks too wedged in.  Probably had to use a crane eventually.

Duke

5

(3 replies, posted in Members' Cafe)

And they encourage 1000 people to carry flaming torches in the city?  Heaven help us if this catches on here and the Minnesota Vikings win the Super Bowl!

Must be a grand sight!
Duke

6

(1 replies, posted in Announcements)

My FoundationOne results showed hits on IDH1 and CDKN2A/B loss which show up in this abstract.  One did not, NRAS.

Dr. Javle, Foundation Medicine, and MDA were among the names I recognized as contributors.

Duke

Easy peasy:

Category:  Male and female singers in Broadway musicals.  (Maybe add musicals that have become movies?) 

Criteria:  Voice only?  Voice and acting ability? (Not all good vocalists can act worth a hoot.)  Over entire career or only one particular musical?  Longevity - many musicals or a one-hit wonder?

Of course, we are the only ones who seem to be playing in this sandbox.

After 'while, crocodile.

Duke

Based on personal experience, you MUST find an oncologist who has a great deal of current knowledge on the treatment of CCA.  I started with a caring onc but she has exhausted her limited knowledge and referred me to another onc.  The first onc is part of a cancer center that has seen a total of four CCA patients in three years.  The second onc is personally treating 15-20 CCA patients now.  Do not settle merely for enthusiasm and caring.  Knowledge is the only effective tool in treatment of CCA.  Make sure the onc explains everything clearly.  Keep asking questions until you understand.  Keep notes of what you were told and when and why.

Forget the published numbers.  Attitude is so important in the treatment.  Taylor's attitude, your attitude, the attitudes of family and friends.  Plain and simple, all of you are fighting for your son's life.  Your best is all you can do.  Make sure you get the best medical team to fight on your side.

Treat every day as a new miracle.  Live your lives, don't just settle for mere existence.

Duke

How about you set up a category for best male and female Broadway musical singers?

Duke

Let's open up things a bit.  How about nominees for the best male and female vocalists of all time and why?  Living or dead.  Solo or part of a group.  Any genre.  "Best" is subjective.  Extra credit if they write their own material, but songwriters may come up separately in the future if there is interest.  So hard to separate the voice from the music.  Suggested criterion:  you are alone on a desert isle with your solar-powered MP3 and have to pick one male and one female artist.

Female - Joni Mitchell.  What a voice.  It takes me elsewhere.  Pure.  Doesn't need backup singers or instruments other than her own guitar.  Stays in my mind even after the music is over.

Male - Johnny Cash .  A lot harder to pick.  Depends on my mood and what kind of fix I need.  As soon as I post this I will think of someone else - "How did I forget ....?"  Actually, it was easy once I wrote the criterion.  Needed someone on the opposite end of the music spectrum to get me up and move.

If there is interest someone else pick the next category.  Duet, trio, group, soul, folk, rock and roll, hard rock, heavy metal.  You make the rules.

Duke

But Lainy, could you ever imagine Barbra singing "Proud Mary" like Tina Turner?  Or either singing "Puff, the Magic Dragon"?

I like Johnny's voice and he is quite handsome.  Not in the same league as Harry Belafonte, but acceptable.  And Johnny is still touring.

These posts are so much more enjoyable than others I've made.  For all of us.  The friendships forged here are beyond anything I'd ever dreamed of.

Peace.

Duke

12

(2 replies, posted in Hospitals)

It's a date.

Duke

But I pay my taxes (most of them).

Have you ever noticed how many really unhandsome singers there are out there who have voices that would not get picked for a volunteer choir?  In addition to Willy, Bob Dylan comes to mind.  "Like a rolllling stoooone."

Duke

Met today with Dr. Davendra Sohal at the Cleveland Clinic.  My current onc has come to the end of her play book and referred me to Dr. Sohal for further treatment options.

My initial impressions were favorable.  He is currently seeing 15-20 CCA patients (not the four in three years that the entire cancer center I am going to).  When I mentioned our Lisa Craine, he was familiar with her case, but said we had little in common.

I am going to get a fourth round of FOLFOX6 then get a CT scan with my current onc.  Based on what they find, if conditions permit, continue with FOLFOX6.  He did not seem to think that would be the case.  It's possible/likely that the platins are not longer helping but are just hammering my platelets with no benefit.  In that case, we would go with just the 5-FU pump and see how I respond to that, which is where we would go if I can't get a FOLFOX treatment in a couple weeks.  Then get a scan. 

Based on those results, look at docetaxel, possibly irinotecan, or a trial at the Cleveland Clinic (if I am eligible) with a CDKN2A/B inhibitor.

It turns out that going on FOLFOX6 has made me ineligible for some trials.  Something to ask your onc about if you change treatments.

I feel much better after this visit.  There is no longer a sign that says "Road ends in one mile."

Peace
Duke

15

(2 replies, posted in Hospitals)

My onc is out of options and she sent me to Dr. Davendra Sohal at the Cleveland Clinic.  I was favorably impressed at our first meeting today.  He feels I have many options, some of which include FOLFOX or 5-FU alone.  He was familiar with our Lisa Craine and her treatments.

Ask me in six months how I feel about Dr. Sohal.

Duke

True story (several times).

Many times when Aimee and I are in stores we separate (sometimes accidentally).  So I spend a lot of time wandering around looking.  Whenever a woman (especially a younger one) asks "Can I help you find something sir?" I frequently answer "Yes.  I am looking for a wife." and then "I lost mine here somewhere."  Some of the looks I get are beyond imagination.  Aimee has asked me repeatedly to stop - not everyone will appreciate my sense of humor.

Duke

If you look back, you'll soon be going that way.

Duke

<Feel free to add your own.>

18

(21 replies, posted in General Discussion)

May the hopes of your dreams be exceeded only by the memories resulting from the pursuit of your dreams.

Peace

Duke

19

(42 replies, posted in General Discussion)

Got an appointment Monday to consult with onc who is experienced with extrahepatic CC.  At least he is in the right area.

Have any of you had this experience with your onc nurse?  It's happened twice now.  The first time was when I was going to see Dr. Alberts at Mayo.  The atmosphere was decidedly chilly.  Like they did not expect to see me again.  Like I was a traitor.

Second time was this week.  Aimee picked up on it first.  Current onc would not schedule a chemo for me until she heard back from the onc she referred me to.  Same reaction - they don't expect to see me back.

is this some sort of defense mechanism, since the majority of the patients they stop seeing won't be back for a permanent reason?  Are they cutting loose to avoid entanglements?

Duke

Too bad it doesn't say what kind of health supplements and names they were produced under.

Duke

21

(42 replies, posted in General Discussion)

Darla -
Did you notice I borrowed part of your signature and added to mine?  Plagiary is the sincerest form of flattery.

Lainy -
Tell your nephew that it was tough being an engineering student in the old days.  Only the rich kids could afford a HP-35 scientific calculator - they were over $400.00 at the time.  So we die hards (with pocket protectors filled with colored pencils) proudly carried our 12" Pickett aluminum slide rules on our belts.  Order of magnitude was close enough.  Besides, a calculator could not be used to draw lines on graph paper.

Duke

22

(9 replies, posted in In Remembrance)

If you go to the website referenced above, you will have an opportunity to add condolences.  I signed it "Duke" which is how she knew me.  My birth name will mean nothing to her.

Duke

23

(42 replies, posted in General Discussion)

Lainy -
Would you be surprised if I identified more with Wile E Coyote than RR?  He got a lot more laughs.

Never really thought much about Spidey.  In my formative years I was in love (or the next best thing) with Wonder Woman, as was any male with a positive testosterone level.

Darla -
This is all referenced to my local onc.  Have not heard back from new onc to set up appointment.  "All representatives are currently busy with other patients.  Your call will be answered in the order it was received.  Wait time is currently estimated to be greater than 30 minutes.   Please press or say '3' to return to the main menu."  If I had the power, that is one thing I would eliminate from our 'civilization'.

Duke

24

(42 replies, posted in General Discussion)

Warning, this is a bit of a downer.

The last post triggered a couple things I saw today.  True, I am a talker, but I also observe.

First thing when I arrived, I noticed a woman a little older than me, on the verge of a serious cry.  She only had one sheet of paper, not the full package, so either this was her first visit for chemo or she was getting a blood test.  I wanted to reach out to her, but could not intrude.  Her husband was with her, but he was stone faced, I think not wanting to acknowledge what might be happening to their lives.  I may never see her again, but I didn't know how to help today.

Then I ran into a woman I knew from church.  She has been undergoing treatments for a couple years and things don't sound good.  We agreed that meeting at McDonalds would be a far happier occasion.  She laughed when I told her there was another place we could be meeting and agreed the cancer center was a better place.

Last thing I noticed.  There are about 14 treatment chairs in the center.  This was the first time I was in the oldest group, by a large margin.  There was one kid I'd estimate in his 20's.  Say what you want about HIPAA, a center is not set up for privacy.  He was scared he would run out of money soon and wanted to talk with a councilor.  Many in their 30's and 40's.  Several men, so not all women.  A few in their 50's.  Very few over 60.  This is the first time I noticed such a disparity in ages.  As much as it sucks to get cancer in my 60's, I can't imagine what it must be to get any cancer in your 20's or 30's.  Cillie, and others, my heart goes out to you.  I have kids older than you.  If one of them was diagnosed with cancer, I would lose it, completely.

Peace.

Duke

25

(42 replies, posted in General Discussion)

Ran into another wrinkle.  Read the radiologist's report on my November CT 2014 scan.  She compared it to an April scan even though there were two others between them, the most recent in September.  When I asked about the choice, I was told "It doesn't matter.  Things have gotten worse no matter which scan you compare it to."

Why do I continually get images of Mickey Mouse, Laurel and Hardy, the Three Stooges, and the Marx Brothers running through my head?  For those readers who are not chronologically challenged, ask your parents about the references.

Peace.

Duke