Of course there is something to be said about ending at the beginning,

I was feeling better and wanted to see what more testing might show.  But then I got worse. I realized it was a shadow game and decided to end it,  Aimee and I agreed that it's time to stop fighting and accept relocation with dignity.  This, folks, is what quality of life is all about.

To all you caregivers, I thank you on behalf of your patients.  Take strength in all you have accomplished.  This site will continue to provide you help.  To patients, Sometimes you don't know what you've been given until you've looked back,  Keep up the fight.

Rolling Stones : "You can't always get what you want but if you try sometimes well you might find you get what you need"

Love  to all

Duke

2

(54 replies, posted in General Discussion)

You must excuse me I am not at my fullest.    I have been fighting about how how
to deal with with death.  I think I am going to go back to my original thought of fighting dignity with not desperation.  I am at that point now,  Accepting with dignity, not desperation.

A friend asked me what what I would do I if I could could change my life and I had no answer.  In  short I guess that means I have have have done pretty much I intend to  in the near term -  plans but no actions.

I started looking for the white light  - I found one here, among all of you.  Not sure what  that means but we have to let go - it's time.

My love to all,  I may post once of twice more but don't  plan on it.  Keep up the fight.

Duke

3

(54 replies, posted in General Discussion)

-Transcribed by Duke's younger son-

I'm back again for better of for worse; a lot better than i was two weeks ago.

  It's amazing how your feelings change, i wanted to toss in that i want to live again.  typing is terrible, got a lot to say as i feel better.  thanks for all your love and prayers, I will fill you in more as i feel better.

What i was so willing to give away, others fought so hard for

Peace!

Duke

4

(54 replies, posted in General Discussion)

(Chuck's daughter again)

I wanted to thank all of you for your kind words. I've kept him updated letting him know how much everyone cares about him. It's  brought a smile to his face every time. All of his family and friends have come by to cheer him up. The mucositis has cleared up well, but he is ready to be at peace. This community has kept him going and fighting for so long. Thank you so much for everything, each one of you.

5

(54 replies, posted in General Discussion)

I am DukeNukem's (Chuck's) daughter. He asked me to post here for him.

My father had another round of chemo this past Monday but had a poor reaction to it and was taken to the hospital. He had developed mucositis on his tongue and all down his throat. He will be coming home today from the hospital for at-home hospice care. It's been a very long week, and he's had his good days and bad ones.

This community has meant so much to him, being able to be so open about something we his family can only try and comprehend and support. He wanted to let you know that he is still continuing his journey but is just going down a different path now.

First the bad news.  Novartis is only willing to let in someone with breast cancer under compassionate use.

Second news. I started docetaxel today.  I will be taking a WBC enhancer tomorrow to help with that.

This is my possible  record - six treatments.  Has any exceeded this?

1.  gem/cis
2.  gem/carbo
3   gem
4.  FOLFOX6
5.  irinotaxel
6.  docetaxel

CT after 4 rounds

Duke

7

(15 replies, posted in General Discussion)

My current (second) onc doesn't pay any attention to CA19-9.  He only pays attention to C scan data.  I believe based on my own data the relative movement (increase/decrease) can provide useful information.

Duke

Sarah,
I am currently a patient of Dr. Davendra Sohal at the Cleveland Clinic Taussig Cancer Center. Prior to that I was a patient at the Mentor UH/Lake Hospital Seidman Cancer Center.

Dr. Sohal is good, but not as aggressive as my desires are.  If I all things were equal (but they seldom are) I would go to MDA.  From what I read here, they are far more knowledgeable and aggressive.  Up until the Fat Lady (valkyrie Brünnhilde) steps up for her aria, I'm going to try everything I can.

You need to determine what you expect from an oncologist and find one who delivers.  And remember, this is all about the life (quality and quantity) of a loved one - accept nothing but the best.

Forget the statistics.  Some of us pass only weeks after initial diagnosis.  Others live for 10+ years.  Since you and your husband are the "nerds", don't get hung up with "analysis paralysis".  Do the best you can and don't look back.  Right now I'd say that getting started now is more important than finding the best treatment.  Have your FIL keep a journal with dates and people and what was discussed, symptoms, what he ate, how much he moved arougn, Depending on the diagnosis, he may be able to slide out with a "simple" surgical procedure.  Or he may have to undergo chemo (cisplatin/gemcitibine is the "standard" for initial chemo).  Once you get a firm diagnosis, search in here for more details/recommendations.

You can reach any of us privately by e-mail if you don't want to go public.

You are in good hands here and better hands at MDA.  Get moving.  You are at step 1.  There's more for you to learn.

Peace,
Duke

You need to talk with your insurance company to see how much they will pay.  My company is Anthem, but you will have another.  Here is a link to their policy on molecular profiling:

https://www.anthem.com/medicalpolicies/ … 150728.htm

They denied my claim but FoundationOne was able to negotiate a bill of $1000.00, down from the original $5000.00 (amounts are estimated but fairly close).

I know you will have the testing done, no matter what the cost, but you should know what you will have to pay, just to avoid the shock of the denial when you get the bill.  You don't need any more stress.

Duke

Diane -
Attitude is so important - that can't be over-emphasized.  Yours is a winner.

Two things to stick in the back of your mind.  I and several others, experienced discomfort on the right side of the body, either front or back, just at the bottom of the rib cage.  We also felt this in our right shoulders.  Kind of like you over-extended while playing tennis or golf, or yard work.  Let you onc know if you experience either of these.

Hang in there.  Let your husband and kids know how important they are to you and getting better.  You might think "They already know that".  True, but say it often anyway.  Followed by a great big hug and kiss.

Duke

11

(7 replies, posted in General Discussion)

Thanks guys.  I took a couple on the chin yeserday but I'm back up on my feet now.  Time to re-read what I've advised others and put my name at the beginning as well as the end.

Will let you know which path Aimee and I go down.

Duke

12

(18 replies, posted in Chemotherapy & More)

My early experience with steroids was that they wired me.  Frequently I was up all night, only geting to sleep after 7:00 am.

Duke

CT scan last Friday showed that irinotecan was no longer working.  No evidence it ever did.  Irinotecan before that showed little effect - maintaining stable is the best that might be said of it.

Trying to get into AG-120 trial (NCT02073994).  If that falls through, docetaxel appears to be the last apple in the basket.  Main problem with trials is that my platelets have steadied about at about 83,000.  Most require above 100,000.

Duke

14

(12 replies, posted in General Discussion)

Sandy -
Getting into the discussion about AG-120 a little.  Irinotecan is not working so onc is looking into AG-120.

I like the idea of pills instead of infusion, but 24 pills a day for 28 days is beyond belief.

Any insight you can give me will be gratefully accepted.  Info from anyone on AG-120 will be welcome.

thanks

Duke

Kris
Whiskey IS the answer; to another question.

Duke

16

(11 replies, posted in Grief Management)

Kris
Maybe it's because I'm a guy or I'm the patient, but as I read your post over and over, it seemed to me to be a testimony to the love you and Mark shared.  And this is why I am not afraid of dying.  I know that part of me will live on.  I'm devastated because I won't see my grandchildren born and grow up; there are so many plans that will never be fulfilled.  Aimee and I will not grow old together - no Golden Pond for us.  Which is why we have to take advantage of the time we have.

Your post is one of the finest eulogies one could hope for.  Mark is proud.

As for you, "One day at a time" still holds true.

Duke

Jason
I am surviving 23 months after initial diagnosis of non-operable IHC and still going, just like the Energizer bunny (Cuz - not a word about how I might look good in pink).  I have posted elsewhere about my first oncologist and her treatments and why I am on oncologist #2.

I had many of your mother's initial symptoms - heard the same story about six months if I did not start chemo.  About the survival time - you can find stories here about patients who have survived years beyond what was initially diagnosed.  Absolutely no reason why your mother can't be one of those success stories.  As a few others have said in other topics "We don't come with an expiration date stamped on our heels."

Same issue with inexperience of the oncologist.  The entire center had only seen four patients in three years.  The time for the biopsy results to come back may simply be because it was done off site - shipping, handling, and waiting in the queue probably took most of that time.  One suggestion - make sure any excess biopsy material is sent to which ever hospital you choose.  It might save time.  Also get any slides returned - all of this is your mother's body - her property, not your oncologist or the lab doing the biopsy.  Might save the new onc some time.

Just to add one more on the band wagon - you need to put as many miles between you/your mother and that onc/gastro as soon as possible.

I started chemo about two weeks after being diagnosed, so you have time - don't panic.  As said by others, there are many reasons to be hopeful.  But this roller coaster has its downs as well as its ups for both of you.  Your lives are changed.  That will take time (and probably some tears) to adjust to.  Normal.

Something to start immediately - live your lives.  We all know there's an elephant in the room (can smell the peanuts on his breath) but that's no reason to drive you to desperation.  Take time to look at the "signatures" at the bottom of some of the members of these boards - they are our philosophies.  You won't find a surrender in any of them.  Then sit down with your mother and write YOUR philosophies.  You don't have to add them here but you will have them to help you through the dark times.  Not sure if you ever saw the "Red Green Show" on PBS.  One of the recurring segments has him ending with "Remember, I'm pulling for you.  We're all in this together."

Peace, and good night.

Duke

"I'm cured." - The best words in the English language.

Duke

19

(2 replies, posted in General Discussion)

I am currently seeing Dr. Sohal.  He is very straight forward.  He has answered the questions I wanted answers to.  He seems to have several strategies in his bag, not just the conventional gem/cis, gem, FOLFOX6, and then "I'm done".  He is heading up a clinical trial - LEE011 for Patients With CDK4/6 Pathway Activated Tumors (SIGNATURE) - NCT02187783 - which I wanted to get into but my platelets were too low, <100,000.  He's still a little conservative - I thought Mayo was a little more open to "out of he box" thinking.  He sees quite a few but not the number of patients that Mayo does so he is not familiar with some of the more "exotic" treatments.  But he is still much better than the onc I was seeing at the local branch of University Hospital's Seidman Cancer Center in Mentor.

He is familiar with Lisa Craine's history.  Interesting that he knew her by name, not just "Patient 1234".

I'm satisfied with his care.

Duke

20

(7 replies, posted in General Discussion)

Sandie
You've found the only way to handle this (and all other cancers).

Every day is a new miracle - treasure it.

Duke

You might want to do some research on Virginia Mason (Seattle)  (University of Washington Medical Center?) simply because they are closer.  But Mayo and MDA are definitely top-shelf, no doubt about it.

One suggestion before you order genomic testing - make sure you KNOW if it is in-network or how much it will cost you based on your insurance coverage.  My onc said she thought it was free.  Guess again.  Billed at $5000 but "only" paid $1000 because it was out-of-network.  But, it's the only game in town if you are looking for that level of info.  I used FoundationOne but I think there are more out there.

Duke

Is there a similar study for those patients who did not get a resection?

Duke

23

(17 replies, posted in General Discussion)

Charlotte -

Thank you for this info.  I will follow it to determine when it will start taking patients.

Duke

24

(91 replies, posted in Introductions!)

Keep that image of a meadow firmly fixed in your mind.  Fill it out with all the details you can - grass, flowers, trees, a slight breeze, maybe a brook running through it.  This will help you over the next months and afterwards.  Tell your dad that he can always contact you in that meadow.  That should provide some measure of peace for both of you.

Duke

25

(66 replies, posted in Introductions!)

I had been on carbo/gem for 8 treatments and the main tumor in the liver was still shrinking when they took me off.  Why?  "Standard  protocol is only for 8 treatments because it might damage the kidneys."  There was no indication of any damage to the kidneys.  This is what happens when you have  an inexperienced onc.  Never confuse enthusiasm with expertise.

I had the same issue with blood in the nasal mucus.  Definitely correlated to low platelets.  I needed greater than 80,000 to get a treatment.  Dropped to 40,000 sometimes.  Seems that chemo destroys platelets.  My problem seems to be that they are being captured in the spleen and do not circulate.

Duke