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.



(15 replies, posted in Introductions!)

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



(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.



(19 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.



(20 replies, posted in Introductions!)

My leftover liver biopsy material from my initial diagnosis was used by the Mayo Clinic for their studies.  I had to have a lymph node removed.  But, since I had already met my max deductible for the year, there was no cost to me.


I found it more interesting in what she did not cover - like, what to do with ICCA after gem/cis and those overall survival rates.



(20 replies, posted in Introductions!)

Push as hard as you can.  There are numerous examples here of going to a second, third, fourth onc before getting a good answer.  Blunt fact: your mother's life is at stake here.  What would she do for you?

I've run into the "able and willing" issue here.  Some oncs stop at conventional treatment.  Others, generally those with greater experience, have the knowledge when to push for non-conventional treatments and have the status with insurance companies to get it approved for payment.

I was stamped "palliative care" right from the start.  Only when I pushed did I get genomic testing.  That's what is leading to a clinical trial when my FOLFOX6 no longer works.



(15 replies, posted in General Discussion)

Can't get that one to work either.



(5 replies, posted in Members' Cafe)

Thanks Gavin.

That's a big boy!  Did you see the floor flex?

And what were those two lassies looking at from the floor during the sword dance?  Maybe to confirm what a Scot wears under his kilt?



(4 replies, posted in Chemotherapy)

I've had four infusions with a pump now. I was concerned at first about sleeping, but it turned out to be a non-issue.  I can sleep on either side or my back without problems.  Just have to be aware when you roll to move the bag with the pump.  Biggest issue I had was with a curious kitten who was drawn to the port and wanted to paw and nibble on it and the tubing.

If you have troubles sleeping, use a recliner or a comfortable upright chair, probably getting short naps throughout the day.  You will get used to it and then getting back to a bed will be a treat.

After the treatment the nurse gave me the instructions on what to do if there were leaks.  Make sure the pump is put in a zip-lock bag before going into the carry bag.

Another very important thing:  If there are problems, get to the oncology department if possible.  Most ERs have no experience with a pump and port and if they start messing with it, you have a significant chance of getting an infection.  If there is a leak of some kind, you can always stop the infusion.  For off-hours, you will get an emergency number for the pump company who can help you over the phone.  This was the scariest part, but should not be an issue.  Make sure you pay attention to the nurse's instructions on this.

Interesting that the treatment will be over the weekend.  They will start the infusion on Saturday and remove the pump on Monday?


I had a little nausea a few days after the first tow rounds, then nothing later.

For me, the steroids wired me.  I typically take a nap in the afternoon then I'm up all night - like until 6 or 7 am.  ( I spend a lot of time catching up on posts here.)

(I'm the opposite of Julie.)

You definitely want to take the anit-nausea med before there is a problem.  If I waited until I was nauseous I could not keep it down.

Your mom may develop a numbness in her toes (neuropathy).  It's not painful, but you should be aware it might happen.  Amount depends on the person.

I always bring snacks.  Aimee even goes out to the nearby ChicFila to get me chicken strips and fries while I'm in the chair.

You've got to drink lots of water to flush the chemo out.  Try to get into the habit of getting a drink every time you pass a faucet.  Room temperature flat ginger ale is also good.

When you get home, it might be easier to "graze" frequently on small amounts rather than taking large meals.  You'll figure that out.

Ditto on having something to do while in the chair.  I read or go on-line with a tablet, or just rest with my eyes closed.

When I was on carbo/gem and later gem only, they used my veins.  When I went to FOLFOX6 I had to have a port.  One important thing about a port is the skill of the nurse preparing the infusion.  Some have the "touch", others don't.  When you find one who is good, insist on having that person in the future.  It makes all the difference in the world.

Light-hearted attempt at humor. 
Patient:  "Doctor, after the chemo will I be able to play the piano?" 
Onc:  "Other than a little tingling in your fingers, you should be able to play just fine.  Why do you ask?" 
Patient:  "I can't play now but I was hoping that would change."
ba-dump-bump ching


Let's see what my nephew answers before we jump to conclusions.  But if he does, Mama Lainy is within her rights to demand a new picture.


Gavin -
The obvious question is:  Do you wear a kilt when doing the Highland Fling?



(15 replies, posted in General Discussion)

Interesting links.  My onc said she would just withdraw fluid with a needle.  That does not seem to be the conventional method.

She prescribed a water pill but the onc at the Cleveland Clinic suggested I not take it unless things get worse.



(15 replies, posted in General Discussion)

Gavin -
The link in your 17:24 post does not exist.



(15 replies, posted in General Discussion)

What triggered you onc's decision to drain fluid build up the first time?

How much fluid was drained the first time?

My CT scan showed "some" ascites but I could not get a clear answer as to when it should be drained.  Most definitive answer was "When your breathing is affected."



(20 replies, posted in Introductions!)

No sure what FoundationOne charges over there, but they charged me $5800.00 which was paid by insurance.



(142 replies, posted in Introductions!)

I agree with what Marion said about reading the scan.  I just had a second onc and radiologist review my CT scan from last Friday and they basically came up with a complete reversal of the prior scan.  No big deal until you realize it completely changes my treatment options.

True story:  My wife and had just come home from a sonogram of our first child and showed he Polaroid to my father who was staying with us.  We didn't tell him what i was.  He looked at it and said, "What is it?  Looks like a dog in a field."



(20 replies, posted in Introductions!)

As a patient, your goal is everything I would hope for from my caregivers.  Well said.

Duke … ocs=Y#locn

Phase 2

This is an experiment with a study drug.  I'm an engineer - you've got me hooked.

Don't look for me on YouTube dancing - ain't gonna happen.



(10 replies, posted in General Discussion)

Based on my experience, one reason I can see to go right to a trial is that there is some requirement (like platelets >100,000) that you might not meet in a few months or some exclusion that you might meet that would rule out the trial.  There were some trials I was eligible for in September that I am no longer eligible for because of low platelets.


From the ICPR studies, 18 of the 177 responders checked that they had been exposed to asbestos either at home at at work.  This is old data so there may be more data available now.


What a difference a day and a different doctor make.

Yesterday went to my local center for FOLFOX treatment.  Met with the doctor and she said the radiologist evaluated the scan from last Friday and determined that the FOLFOX was not working (larger and more numerous tumors and possible met to the spleen.  She was stopping the FOLFOX treatment and sending me to the Cleveland Clinic for further treatment.  She also said I could stop all treatments and just be content with being comfortable.  Not something to inspire hope and confidence in a patient.

Anyway, the onc I saw at the Cleveland Clinic is on vacation so I got an appointment today with Dr. Estfan.  He and a radiologist reviewed the CT scan from last Friday and compared it with the scan from the end of November.  They had a totally different read on it.  There was some growth but it was less than 10% which is considered stable.  His recommendation was to continue with FOLFOX for four more rounds, get another scan, and re-evaluate options.  He was going to have the scans reviewed by others and then contact my Mentor onc with a recommendation to continue FOLFOX in Mentor.

Interestingly, I got a call from my Mentor onc this morning.  She had just gotten word that University Hospitals in Cleveland had approved a clinical trial for LEE011 which was opening next week.  Dr. Sohal already was conducting this trial at the Cleveland Clinic since last August.  It was Option E on my list.

So put away the long faces for now and join me in a happy dance!


No experience, but an opinion.

If he qualifies for the trial, go for it.  If he goes to second line chemo (FOLFOX?) he may get to a point where he no longer qualifies (maybe due to low platelets).  I originally thought that trials were the last resort, but there are many people here who had great results from trials.  Plus, in some cases, certain chemos rule out some trials.

Do you have genomic testing results to support going for the FGFR trial or is it based on something else?

I assume they ruled out another resection.


Lorraine and Donnie-

I second what Lainy said.

Also, it has been my unfortunate (and hopefully atypical) experience that some doctors have huge egos that prevent them from acknowledging that someone else may know more or be able to provide better treatment for the patient.

Keep on doing what you are doing.