(209 replies, posted in Hospitals)

I guess I should update this.
Started April 2011 at Memorial Sloane Kettering. Dr. Kemeny was my onc and Dr. Fong was my surgeon.
Surgery was cancelled completely.
In 2012 I went to Fox Chase for SBRT radiation with Dr. Meyer.
In March 2013 I transferred my care to Fox Chase with Dr. Denlinger and began the trial I am currently on.
I never was comfortable with Dr. Kemeny. I am much happier with Dr. Denlinger.

Hi everyone. Long time no update. I was having so much fun being "normal" this summer! But, like the summer passes, so does feeling "normal". My latest scan shows a slight increase in the targeted lymph node. It's slight, but it's an increase. So it's back to being a patient!  I'm now on cycle 31! Yep, I said 31!! And I'm hoping the node stops growing so I can stay on the trial. Now I get to deal with scanxiety again.
All in all, I'm still doing good. Except for that nasty lymph node.


(5 replies, posted in Members' Cafe)

KrisV, I think it's a great place! You picked a fine spot for you, and him. My request is to be scattered down a waterfall so no one quite knows where my ashes go... And I can fertilize the flora and fauna.


(19 replies, posted in Members' Cafe)

Duke, sorry about your sister. There are lots of places to find support for breast cancer. Based on her location, the clinic she goes to May very well have its own support group. Around here is a big support organization for breast cancer survivors. Her onc might know.

I know it's not the same, but my brother has diabetes, and is a bad patient. The other day he told my mother he is tired of the pain and would rather just not wake up one day.... I understand and wish I was closer than 1000 miles away.

Christine, I answered your email.
As to who is "right", it's more of who you feel more comfortable with. Who you think has your best interests at heart.
I was not on this trial, although I have the pump. I wonder if I should check on this trial as a possibility IF the trial I'm on stops working.


(6 replies, posted in Members' Cafe)

Me, too! Here's the next best thing... Well, not really!

I was talking online about a cc bracelet.. Here's my first try! It's adjustable, too!

I hope you get some energy back. I had already lost 2 hepatic arteries when they did the portal vein embolization... We thought I could finally have surgery! Well, they nicked my lung and gave me a pleural effusion instead, so my breathing and energy were nill.
I will say that after the effusion was better, I didn't notice any drop in energy.
Although they downplayed the difficulty, it can be tricky. Give yourself some time... The body has to adjust to the changes in blood flow, along with the necrosis of part of your liver.
If you are concerned, ask your onc. They are there for you, after all. Maybe his or her assistant can help if you can reach them.


(17 replies, posted in Members' Cafe)

Love this post! Keep that sense of humor and you'll have the whole ostomy colony laughing! (I know... Bad play on words... Colostomy... Ostomy colony... Get it?? Oh, never mind!! lol)


(6 replies, posted in Members' Cafe)

Glad everything went well!! Now keep those feet up and don't overdue it!

I started cycle 27! Yep, I said 27. That's over 2 years of stability on this drug. We have decided Lilly doesn't want to deal with the added work of making this a phase 2!!! They have arms A, B (I'm in B), C, D, E, F. C-F have additional drugs with the treatments.
I'm kind of getting the idea I'm an enigma on this... Still stable after 2 years. I know I'm one of 2 they know if that's on year 2. The other person is a month or so ahead of me. Many people have dropped out.
Hair is staying stable, too. As long as I keep it short, that is. When it gets longer (shoulder length) it gets really straggly.
And we have upped my Lasix again. I'm now on 60 mg a day. The left leg is almost always at least a little swollen, with really bad cankles by the end of the day. Unless I wear compression stockings! And I like sandals! Without socks, thank you! So I have to be careful about wearing non supportive sandals, etc... And the left leg almost always hurts now...
But that's my rant. Not much to complain about! So I've got a bum leg! I've got a bum liver, too!! Trying to change my diet to a low sodium diet... Unfortunately, bagels are now off my diet!
It could be worse... They could have told me no more... (SHUDDER)... CHOCOLATE!!

Thank you so much for the news! It sounds so promising! I have talked to my onc about this drug and she knows I am veryveryvery interested!

Me, too, Duke!! I was devastated when my surgery was cancelled. But have learned I CAN and WILL live with this bast#rd!


(21 replies, posted in Members' Cafe)

Hey, momma!! I'm excited for you! Sending positive thoughts and prayers.

Oh, crap! I should have said you're gonna hear a sh#%load of stupid puns!!

Great news Momma!! Here's another: I guess it's all just been a pain in the A$$ for you!!

Glad SOMETHING is gonna be done for you.
When I broke my tailbone I got all the "what a pain in the a$$", "don't you feel like an a$$?", etc... I'm sure you're gonna hear plenty!!
Good luck and keep positive!!

Love you!


(8 replies, posted in Members' Cafe)

Haha Lainy! I'm a Cancer patient: I have no money!!! lol


(12 replies, posted in Members' Cafe)

Congratulations Grammy!!


(8 replies, posted in Members' Cafe)

Update: she is still unresponsive.... He's posting how devastated he is. and says if the doctors say she is brain dead he will rethink his decision.

I think I'm going to put a notarized piece of paper in my wallet saying no one has the right to overturn my DNR decision.


(8 replies, posted in Members' Cafe)

I have to vent on here because I can't post this where I want to! I know this guy who's a friend on FB. His mom has been sick for many months. She keeps falling and has become very frail. She has gone from the hospital to rehab centers for the past few months. Her latest issue was pneumonia.
Here's my vent...
SHE HAS A DNR. He received a phone call early this morning that she was unresponsive. He broke the DNR and told them to incubate her and do whatever is necessary to try to get her back. Now? She's intubated and unresponsive. I realize it's his mother and I don't mean to sound cold, but SHE HAS A DNR IN PLACE for a reason! So do I!! Is it that easy to break the wishes of the patient??
I think he is being very selfish. Again, I realize it's his mother, but don't her wishes count?

And as I'm writing this I'm getting ready to go to another visitation before a funeral. I still can't do funerals, but I'm going to pay my respects to my friend as much as I can. She was diagnosed with pancreatic cancer in December. I HATE CANCER!

Here's a pic of my parents and I in 2011 shortly after diagnosis. And Lisa Craine and Lauren Kunklier and I in 2012(?)



Nice pics. Great to put faces to your family!


(12 replies, posted in Members' Cafe)

Ok, here's my try. Me and Stazi.


(3 replies, posted in Members' Cafe)

Great pic! And great new feature! Love this! Maybe I'll post a pic of Stazi! lol


(8 replies, posted in Members' Cafe)

I moved to NJ at 8 and had a horrible time at the movie theater. I wanted a grape pop and she tried to give me a Popsicle. I finally got her to figure out I wanted a fizzy drink. She said "oh, you want a grape soda!" Soda??? HORRORS! Club soda?? Yuck! Then I got the "grape coke"... Never have figured that out!
We had plug ins instead of outlets. Sacks instead of bags.

You forgot "ufdah"!!