1

(9 replies, posted in Members' Cafe)

I'm thinking we've been down a road like this together sometime in the past.

Duke

Lola -

Good news about Mayo.  Let us know who she sees, since many of us have seen different docs there.

I'm in NE Ohio - where are you?

Duke

3

(9 replies, posted in Members' Cafe)

No currency in the beyond.  And don't even go into electronic transfers.

Duke

4

(9 replies, posted in Members' Cafe)

I agree with both your conclusions.

Your signature says "Teddy "in our hearts forever."  Why are you surprised you are not in his heart forever?  Works both ways, cuz.

From Wikipedia:

"In the introduction to his book, Jung on Synchronicity and the Paranormal, Roderick Main wrote:[7]

The culmination of Jung's lifelong engagement with the paranormal is his theory of synchronicity, the view that the structure of reality includes a principle of acausal connection which manifests itself most conspicuously in the form of meaningful coincidences. Difficult, flawed, prone to misrepresentation, this theory none the less remains one of the most suggestive attempts yet made to bring the paranormal within the bounds of intelligibility. It has been found relevant by psychotherapists, parapsychologists, researchers of spiritual experience and a growing number of non-specialists. Indeed, Jung's writings in this area form an excellent general introduction to the whole field of the paranormal."

Wrap your mind around and get back to me.

Duke

5

(28 replies, posted in Introductions!)

Onc's don't know everything.  Mine pushed me into FOLFOX6 which basically did nothing - at best it may have held things stable for a few months, which is good news.

My FoundationOne report identified some genomic alterations.  Since the FOLFOX is no longer working, my onc has no further options for me in the way of treatment.  However, a new onc at the Cleveland Clinic has identified a clinical trial that he is conducting that I may be eligible for.  I did the pre-screening but there is a problem with low platelets.  I go for re-test April 6.  If things are good, I start April 13.  (In fairness to my current onc, she identified the "brand new" trial after I had been in contact with the Cleveland Clinic.)

Kevin, you have to make the best decisions you can at the time, based on what you know.  CCA develops a resistance to chemo treatments.  Sometimes not just one at a time, but broader.  The commonality between my chemos is a platin-based chemical.  Whether it's cisplatin, carboplatin, or oxaliplatin, I think CCA develops a resistance faster with each new chemical.  They are paired with other chemicals (gemzar, 5FU) which may help extend their usefulness, but nothing works forever.  By bringing in the SIRT you were giving a new form of treatment a chance.

When the Foundation report comes back, it will list a few ongoing trials.  If none are available to you, keep searching the Trials section here to find out what is coming out.  Plus, Gavin is invaluable at posting new stuff.  Watch his new posts.

After carbo/gem stopped working for me, my onc put me on gem alone which worked well for many months.

Experience of the doctors with CCA is of paramount importance.  I was (maybe) the second one my onc had ever treated.  The whole center had only treated four in three years.  No second opinions there.  Don't underestimate the value of a second opinion.

Hang in there.  We are all pulling for you and your mum.

Duke

6

(9 replies, posted in Members' Cafe)

Obviously T knew you needed to talk.

Duke

7

(5 replies, posted in Introductions!)

Remember - this is your life and your future.  Is it worth fighting for?  You have to be ready to be your own advocate.

Duke

8

(15 replies, posted in Members' Cafe)

Has anyone had experience with increasing platelets by diet or anything else?

And, once again, we get to the topic of men in kilts.

Duke

I second what Lainy said.  Enthusiasm is no substitute for experience.  My onc had very limited experience with CCA.  Maybe she has treated one other case.  Could never get a straight answer.  Never got an answer about whether the main hospital had any more experience.

I am trying to get into a clinical trial.  That doctor is currently treating 15-20 patients with liver/bile duct cancer. 

Duke

10

(15 replies, posted in Members' Cafe)

Good news/bad news.

Everything is fine, except platelets - they were 43,000 and they want to see 100,000.  No surprise that platelets were down - I've had to skip treatments because they were too low.  Have to get new blood work April 6 for a recount.

Slightly bummed out.

Duke

11

(15 replies, posted in Members' Cafe)

Did the pre-screening tests yesterday.  Blood work, urinalysis, EKG, CT scans, echocardiogram.  Will find out later this week if I am accepted.

Got everything including my eyes crossed.

Duke

This is one article you can read in full and even download as a pdf file.

Duke

13

(3 replies, posted in Websites)

Marion-
Is there any way to view the article or to find out how much it would cost to buy and if we could post it?

It sounds like a good overview.

Duke

Just wanted to add my rejoicing in your recovery.  Enjoy life as you were meant to.

Duke

15

(15 replies, posted in Members' Cafe)

One thing I've noticed while waiting for treatments is the number of young people undergoing chemo.  I'm talking a good 10% or more.  It's bad enough that "mature" people get cancer - I don't know how I would have coped with it in my 20's or when my family was young.

Duke

16

(15 replies, posted in Members' Cafe)

Robins are back as are the turkey vultures.  Snow is gone except for piles in parking lots.

I've been MIA for a while.  Have had trouble sleeping more than three hours at a time for the last month.

Pulled the plug on FOLFOX - it's not working, not sure it ever worked.  Alk-phos and CA19-9 have increased to numbers I haven't seen since my first round of chemo.  They've basically doubled since early January.  Going with the LEE011 trial at the Cleveland Clinic.  Going in Monday for pre-screening to ensure I am eligible.  Going with the trial was only a question of when, not if.  Plus, they are only taking 90 patients.  I don't want to miss this train.

Trial is NCT02187783.  It's a phase 2 signature trial - don't know what that means.  Never would have found this if I hadn't done the genomic FoundationOne testing.

Duke

As for running down the road in any attire, I urge you to wear good shoes with lots of tread.  You don't want to compound things by falling.  But, it would give the ambulance squad something to talk about when they got back to the station, so it wouldn't be all bad.

Duke

My weight returned in about six months to what it was before I experienced my initial weight loss (34 pounds).  I found that "grazing" (eating many small meals/snacks) worked best.  Nutrition was a secondary concern.  At 5'10" and 139 pounds I was a little gaunt.

I was diagnosed in July 2013 at stage IV with mets to the liver, lymph nodes, and lungs.  What appears to be the "conventional" series of treatments is gem/cis (or gem/carboplatin), then gem alone, then FOLFOX6 or FOLFIRI (which are similar).  Then you start getting into treatments that your onc may have experience with.  Not all agree on what to do next.  Much depends on what your insurance picks up - your onc can be a great help here - but some are more successful than others or may push harder to get these non-conventional treatments.  You may hear "That's not approved by the FDA for CCA."  True, but your onc can apply for a "hardship" (not sure if that's the exact word) treatment approval.  Keep your eyes open for clinical trials.  They are not always "the last resort".  In fact, if you wait too long, you may be excluded.  Has your sister had genome testing done?  They can help point her in the right direction for a trial.  Another thing to consider is that the trial may close before you apply.  See the discussion on Keytruda.

Biggest problem for me was low platelet counts which prevented many treatments.

If the tumor continues to shrink, will she be eligible for a second resection?

Biggest problem I had with steroids was that it kept me up all night.

Hang in there - we are all pulling for you and your sister.

Duke

19

(8 replies, posted in Members' Cafe)

Heard about the group "Da Yoopers".  "Second week of deer camp" is a hoot.

https://www.youtube.com/watch?v=kb9yhhflmvY

Duke

And we love you too, Julie.

Duke

21

(8 replies, posted in Members' Cafe)

Leonard Nimoy died yesterday.  Not the best of actors but a remarkable influence on my generation (at least he didn't have a bad wig).

Duke

Kilts and food seem to be frequent tangential subjects.

Anyway, had a FOLFOX6 treatment Wednesday.  Still without the 5FU in the chair, only with the pump.  Platelets were 115,000, highest in months.  Still having a heightened sensitivity to cold in my finger tips.  Goes away after 4-5 days.  CA 19-9 rocketed up though.  Had been running 70-120 since last July but is now 174.  Might have to push for another sample in the next treatment instead of waiting until following treatment.  Option E might be closer than I thought.  Diuretic still working.

Another change.  Normally the steroids keep me up the first night.  Not this time.  Slept fine the first night but was up until 5:30 the second night.

Duke

23

(24 replies, posted in Introductions!)

If all else fails, use it as your avatar picture.  We can then download it and enlarge it.

Duke

24

(15 replies, posted in General Discussion)

I'm taking a diuretic (100 mg spironolactone / aldactone) every other day (prescription is daily) and it seems to be helping.  Onc is concerned it may increase potassium when combined with my high blood pressure med lisinopril.  Blood work yesterday showed no problems with potassium - will keep it every other day and check again in two weeks.  Pregnant look is gone, but still a little tummy fat.  Lost about 4 pounds since i started taking it.

Duke

25

(26 replies, posted in Introductions!)

Do you have any company or government funded disability payments?

I was on gem only after months of carbo/gem.  It was two weeks on and one week off.

Duke