Those are the best survival rates I've ever seen for non-resectable IHCC.

Duke

Make sure it is a genuine Gucci or or Coach or something else Prada, no knockoffs permitted.

We'll be praying for the surgical team as well as you.  You have the easy while they work hard.  And then Robin works hard while you can be Cleopatra for 2 months.  Maybe we should add her to our prayers.

Duke

3

(16 replies, posted in Members' Cafe)

Thanks to one and all.  Not sure what I'd do without you.

Duke

4

(5 replies, posted in Members' Cafe)

Eyelashes are almost gone, eyebrows are sparse, and there are a few hair strands in each comb.  But the beard is hanging in there.  Maybe I'll keep it and look like one of the Smith Brothers (of cough drop fame).

May need to update my picture.

Sigh. (LOL)

Duke

5

(16 replies, posted in Members' Cafe)

Nancy passed at 0210 this morning.

Please keep praying for her family and loved ones.

Duke

6

(16 replies, posted in Members' Cafe)

Thank you.

She is in the hospital surrounded by her mother, brother, children, and significant other.  Probably others.  She is peaceful and comfortable, and knows they are there.  Guess you can't ask for more than that.

Duke

7

(16 replies, posted in Members' Cafe)

Nancy, one of my nieces in her early 50s, is dying of another type of cancer, only a matter of hours.  Her dad died two years ago and this must be hammering my sister.  Kids should outlive their parents.  Nancy's husband died a few years ago from cancer.

Please pray for my sister and her two other kids and Nancy's teen age kids as they wrestle with even more pain.  And the rest of the family.

Why, why, why?

Duke

And "T" would flash the lights hysterically.

Duke

As long as it doesn't blink SOS, you're golden.

Duke

Our act would be so big, the audience would leave to make more room for it.

Duke

11

(24 replies, posted in Introductions!)

Nikole -

I am being treated by Dr. Davendra Sohal (he is treating 15-20 patients with CC and similar liver cancers) at the Cleveland Clinic.  I also met once with Dr. Bassam Estfan from the Clinic.  Both are very dry, almost removed emotionally, but I have good feelings about them.  They strike me as very knowledgeable.  My previous onc was at the Seidman Cancer Center in Mentor, OH. She specializes in women's breast cancer.  That Center has seen only 4 CC patients in the last 3 years.  She has run out of treatment options and nothing else to offer.  Dr. Sohal had a possible trial (my platelets were too low to get into it) but also two more chemo options, one of which I am using now.

I never got the info I requested about University Hospitals and their CC experience.

I would not rule out Mayo in Mn or MDA in Tx (Dr. Javle) as places for second opinions.

Duke

12

(48 replies, posted in Introductions!)

Aiste -
Your father has everything going for him.  Small tumor, diagnosed early, no metastases, a great attitude and a loving daughter.  Don't despair - in addition to all those things in Lithuania, you have the support and prayers of everyone in this group.  Look at every day as a miracle and live every day to the best your father and you, can.

Duke

13

(4 replies, posted in General Discussion)

Suggestion:
Make sure you have an idea how much tissue is stored and where it is stored.

I had an adventure getting my excess biopsy material transferred from my local clinic to the Mayo Clinic.  Mayo then used it all and I had to have another biopsy done to remove a lymph node to send to FoundationOne for genomic testing.  Thank goodness for insurance.  This may not be an issue if Sloan is going to do it all.

Duke

As long as the cuppa is strategically place, no prob.  This is a family site, don't you know.

Duke

Gavin -
I think it's time to go all out for Lainy.  How about that long-promised picture of you in a kilt for when she comes out of surgery?  If you don't wish to post it here, send it to her in an e-mail.  Unfortunately, I have nothing similar to offer, but I would if I could.

Uncle Duke

Great idea, but how enforce it, especial;y for old studies?  And, I really hate to say this, how do you force someone, like a big pharma who has paid for an entire study, to release information?  Folks, this is business, and business has secrets - proprietary, classified, call it what you will.  The government does it and uses taxpayer dollars to pay for it.

Way to heavy for this early.

Duke

Marion -

Unfortunately, this only underscores the importance of early detection by checking for serum markers (alk-phos and associated carbohydrate antigen (CCA-CA) on a regular basis.  Which requires that people need to understand the importance of this.  More so, MDs and DOs need to make this a priority, especially when alk-phos goes up they need to check for CCA immediately.  Which raises the costs for the insurance companies then for the insured.

Duke

According to Nasra from Mayo Clinic, this is an extension of the earlier information gathering by Dr. Lewis Roberts.  For those who already filled that form out, there is nothing to do.

Duke

19

(5 replies, posted in Chemotherapy)

I'm a patient.  When I was first diagnosed, my onc said if I did not take chemo I would be dead in six months.  Surgery and radiation treatments were not options.  Since then I got a second opinion on treatments.  And I've gone to a third onc who has experience in treating CC.  My first onc had no more treatment options but the second one has at least two.

I've been doing chemo since July 2013.  For now I'm fighting as hard as I can.   I also realize there will come a time to recognize that my treatment options are gone.  And I will have to deal with that , talking with my wife.  In my case chemo was the best answer. 

As for the prognosis, contact Lainy.  She has a list of knowing when the end is near and will be happy to send it to you.

Duke

20

(10 replies, posted in Members' Cafe)

Quick update.

Slept for 5.5 hours last night - first time over 3 hours in two months.  Nice.  Steroids don't seem to affect me now.  Used to be that they would keep me up all night.  Lots of time to post to these boards.

No early (24 hours) "D".  I have been taking one imodium tablet every 12 hours as prevention.

Will check on hair loss.  When you have little to start with, it's hard to detect.

Duke

21

(10 replies, posted in Members' Cafe)

81 degrees today.  Daffodil's  are budding or blooming.  Bud's on everything.  Put the snow blower in the barn.  Lots of business to take care of.  Next thing is maintenance to get garden tractors back in service to mow grass.

Had first irinotecane treatment.  Major side effects are loss of hair and diarrhea.  I'll look like Patrick Stewart.  Better than William Shatner with his hair pieces.  Taking precautions with an immodium pill before I go to bed.

Duke

22

(21 replies, posted in Members' Cafe)

I completely missed what you meant by "relocated".

But haven't you known some people who are just plain nasty or mean?  Do you want them as next door neighbors in Heaven?  Or maybe, they simply disappear and wind up nowhere.

Duke

23

(21 replies, posted in Members' Cafe)

I was talking about Heaven.  And the different community would be somewhere it is extremely hot.

So, where did T relocate to and when?

And by His, I meant G_d's house.

Duke

Surgery is the only option for a cure, so it should be pursued if at all possible (my opinion).  If I had the chance for surgery, I'd be in the OR prep room in a heartbeat asking for a surgical gown.

Duke

25

(21 replies, posted in Members' Cafe)

The only thing better than a 50 gallon drum of Windex is to have someone ELSE to use it.

Hopefully Teddy relocated to a different neighborhood in the same community.

Everything white?  How does he hide the pasta and vino stains?

Duke