We always did that too! I think it was on a Seinfeld show, too.

2

(21 replies, posted in General Discussion)

Sandie, have a wonderful trip. Fill it with amazing memories and come back ready to fight again! I wish you all the best!!

3

(11 replies, posted in Good News / What's Working)

Great, great news!!! I love reading success stories like this!

Safe travels!! Good luck with Dr. Javle!

5

(8 replies, posted in General Discussion)

The nurse did put in the clot breaking med. And we still had a bit of a problem. But Tuesday was better. Not the best, but much better!
As far as the ct scan... No measurable difference. So, the word is stable!! lol

6

(8 replies, posted in General Discussion)

I had a ct scan today. Oh, the joy!
I've been gaining weight: am now heavier than I've ever been. But I ignore that.
I went today and wasn't worried. Figured everything would be status quo. Then I saw my blood work. Now I have a niggling worry... Blood counts are low for the first time in over a year. So is calcium, potassium, sodium, etc. But the RBC and WBC is what concerns me. They aren't too bad, but why now?
Hopefully it's just a bad day.

Oh, and she couldn't get a blood draw from my port. I had 5 or 6 saline and 1 heparin added trying to get some draw, but we finally had to resort to the special sauce (whatever that is) and she STILL had trouble! I walked, I jumped around, I did deep breaths: nothing helped!
Anyone else have this problem? I've been doing this for 4 years and this is a first for me.

7

(0 replies, posted in General Discussion)

I had a ct scan today. Oh, the joy!
I've been gaining weight: am now heavier than I've ever been. But I ignore that.
I went today and wasn't worried. Figured everything would be status quo. Then I saw my blood work. Now I have a niggling worry... Blood counts are low for the first time in over a year. So is calcium, potassium, sodium, etc. But the RBC and WBC is what concerns me. They aren't too bad, but why now?
Hopefully it's just a bad day.

Oh, and she couldn't get a blood draw from my port. I had 5 or 6 saline and 1 heparin added trying to get some draw, but we finally had to resort to the special sauce (whatever that is) and she STILL had trouble! I walked, I jumped around, I did deep breaths: nothing helped!
Anyone else have this problem? I've been doing this for 4 years and this is a first for me.

8

(0 replies, posted in General Discussion)

I had a ct scan today. Oh, the joy!
I've been gaining weight: am now heavier than I've ever been. But I ignore that.
I went today and wasn't worried. Figured everything would be status quo. Then I saw my blood work. Now I have a niggling worry... Blood counts are low for the first time in over a year. So is calcium, potassium, sodium, etc. But the RBC and WBC is what concerns me. They aren't too bad, but why now?
Hopefully it's just a bad day.

Oh, and she couldn't get a blood draw from my port. I had 5 or 6 saline and 1 heparin added trying to get some draw, but we finally had to resort to the special sauce (whatever that is) and she STILL had trouble! I walked, I jumped around, I did deep breaths: nothing helped!
Anyone else have this problem? I've been doing this for 4 years and this is a first for me.

9

(6 replies, posted in Members' Cafe)

Happy birthday Rick!!

10

(14 replies, posted in Members' Cafe)

Great news! Wonderful to read about those lovely pet scan results!

11

(18 replies, posted in Members' Cafe)

I'm on medicare and have addtl insurance that I pay for. When I shopped for what coverage I should get I discussed the clinical trial, the excessive ct scans, the pump that needs to be monitored, etc. None of the coverage includes the pump, which is about $1300 every 8 weeks. Thankfully I'm not seeing it on any bills (not that I open them! lol)
Coverage from medicare and my part (whatever) is very small for all the Cancer costs, but again, I think Fox Chase accepts their payments.

12

(5 replies, posted in Members' Cafe)

I knew you'd chime in with this story!! lol

13

(8 replies, posted in Members' Cafe)

Gavin, that cat is much fluffier than my Stazi!

14

(8 replies, posted in Members' Cafe)

I don't know that cat. Maybe I'll have to look it up!

15

(7 replies, posted in Members' Cafe)

Thanks Randi! You, too!
Lainy, Arthur has made an appearance in my life, too. My knees are really feeling it! We are having a pretty mild time right now. It's been in the 50s too. Beautiful!! I just wish it could stay like this all winter!

16

(7 replies, posted in Members' Cafe)

Aw, Lainy, I'm sorry things aren't great! You deserve great!!
I know you are happy with your life, but (in my case anyway) it can always be improved when you get to share it with someone special.

17

(8 replies, posted in Members' Cafe)

I've been thinking about it for quite some time now, and finally decided to bite the bullet! I rescued the cutest little 3 year old cat from the ASPCA.
She's white with one blue and one green eye. And grey mustache looking markings on her head. And two faint grey rings on her rail. She is adorable, but very skittish. I'm thinking she was abused at some point. She spent the afternoon hiding in the bathroom vanity with her litter box. I finally coaxed her out with some wet food. Then she came out for dry food and after pigging out she switched from one bite of dry food to pets from me to another bite of dry food to pets from me.
After about 5 hours she finally warmed up enough to spend 1/2 hour nudging me as I lay on the floor and pet her.
But every time I get close she crouches and looks for her escape to the bathroom! As I write this I am "ignoring" her and she's hanging out in the hallway right outside the bathroom door!
We played a little, but she spooks so easily and runs back into the bathroom.
I haven't decided on a name. I kinda like Stazzi (because of the mustache) but have tried sweetie, angel, and baby. sweetie seems to get the best response. But every time I say angel she blinks.... I've got time, but would like to decide soon!
I would love to leave her loose tonight, but she has yet to use her litter box (8+ hours) and I'm afraid of where she might go instead.

Cycle 22 started on Tuesday... That's 19 months on this drug! And I have edema and a pimply reaction. All in all, not bad.
Stable is still the word of the month. And normal ranges for CA19-9 and bili. Still a bit off on the albumins and esonophils but I'm not too concerned.
Just wanted to post an update! Sorry I don't stop in often but with organizing the apt. and working (how do people work FULL TIME???) I just don't seem to have spare time anymore! I've even cut down on poker and karaoke!

19

(13 replies, posted in Members' Cafe)

Lainy, I am so happy for you! You have too much life and love to give to someone special... I have experienced it firsthand!
I think it's great you floored him so much he got scared... It means he took a step back and really thought about it. Makes this new beginning even more special!
Btw, I asked Santa for a boyfriend this year... I hope he delivers. I'm getting sick of the weirdos out there.... Getting a cat is looking so much nicer! 

20

(20 replies, posted in Members' Cafe)

Lainy, sorry things didn't work out! At least you had a few good times. Think of it as practice! smile
And use my word: NEXT!!!

What great news! I'm so happy you have been able to have "well time" between surgeries. I'm praying this is the last one he needs! Clean margins are great words to hear.

Duke,
I think they watch trials very closely. I had EKGs done every day for a week, then once or twice a week, then every 2 weeks for 3 months. Plus tons of bloodwork. I hate to say it but my guess would be you need to be at the CRU that administers the trial.
One bright spot: if it's pills, you will eventually hopefully only have to go there every 4 weeks. But that's about 3 months in. And they MIGHT accept bloodwork from elsewhere during some of the mid term visits after the first few weeks.
Good luck!

23

(27 replies, posted in Members' Cafe)

Stop the cartwheels!! He was wayyy too pushy, and had a few things he said that I took offense to. He can't understand why I'm not giving him more of a chance, but he "SSSSHHHH"d me in the middle of a conversation for a basketball recap. REALLY??? A few other things I will refrain from describing made me decide we don't have a whole lot in common.
Next!

Congratulations!! I hope it works out for you! It seems like you are certainly enjoying yourself!

Vicki, I'm catching up on posts, and am happy to hear you're enjoying the sun!! Yes, chemo is hard but I always say it beats the alternative. Hopeful for good news for you next week. Remember, a positive attitude is key to defeating this monster!!
I, too, lost some hair with this latest treatment, but it is starting to grow back. I never lost enough to need a wig. But I started with twice the hair on a normal head... I now have a normal head of hair. I started using Loreals Everpure system for my hair. It's sulfate free. They have a root awakening and strengthening system, and it's $6-$7 a tube as opposed to the $25 "specialty" shampoos and conditioners! My eyebrows are thinner, too, and the same with my eyelashes. I never considered myself vain until I needed to use mascara! I miss my eyelashes the most! lol

Best of luck next week in Houston with Dr. Javlie!