1

(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!

4

(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!

7

(1 replies, posted in General Discussion)

Anyone on medicare that gets this done... I don't think it's covered. I haven't gotten a bill yet but I did get paperwork saying Foundation One had sent in a request for redetermination but was again denied by medicare. I'm still glad I got it done. But I'm not sure what if anything I'm gonna have to pay.

8

(27 replies, posted in Members' Cafe)

Lainy, I MIGHT be joining you in the new relationship stories! I had a first date last night with a guy my age... I know, what a shock! lol
He seems really nice and his reaction to my news was that he's going to have a long talk with God. He called me later to assure me that the "C" word doesn't scare him. Of course the fact that I've been stable for almost 2 years helps with the news flash.
So we will see. We have another date Friday after I get done work. And he wants to see me sat. night too!

9

(27 replies, posted in Members' Cafe)

Lainy, what wonderful news to read!! I'm so happy for you!

10

(5 replies, posted in Members' Cafe)

Thanks... And just no poker or karaoke for the week or so... I gotta move on sat!!! Then I'll be out again. I am already suffering withdrawal! lol
Marion, thanks for the call. It was great hearing from you!

11

(5 replies, posted in Members' Cafe)

I know I posted last week, and I also know I am MIA  a LOT! And I apologize. But with work and moving, my life is hectic.
I have another reason... One a bit more selfish... I have been on this site for almost 4 years, with little breaks here and there. It is a wonderful site for support and information. But I stepped away for a while, and I have to admit it has been nice not to think "cc" all the time. I want to be supportive, and still stop in and read and reply to some of your posts, usually once a week or so. But I don't think I can go back to cc being my entire life.
Yes, I still have cc. Yes, I still receive treatment. Yes, I still need this site occasionally to keep up with everyone. But while I am trying to live a more "normal" (stop laughing, especially Lainy, Marion and Gavin!) life, I will be a bit less conspicuous.
I want to thank everyone for their knowledge, love and support. And I'm sure there will be times I am more active. But for now... It's work, packing, sleep. (BTW, I even gave up singing and poker for the last week until after the move!! lol)
My wish for all of us is a cure!! And until then, treatments that work. Good luck to all of you/us, and I'll be popping in occasionally.

First... Good luck! Yes, chemo also attacks good cells, and that stinks.
As far as "cold caps", I asked a few years ago and very few facilities offered it. The startup is extremely expensive. (I was treated at Sloan Kettering Mem Cancer Ctr). My previous onc wasn't too excited about it for me, maybe because I had neuropathy and she thought it might be painful... I don't know.
And cannabis oil is thought to be a great option. Proven? Probably not, but if you think something will work, that's half the battle. I know of some that use it, and others that smoke cannabis or cook with it. I'm sure it doesn't hurt, and since smoking it eases nausea, it just might have a basis.
Let us know what you find out.

13

(6 replies, posted in Members' Cafe)

Hi, all! It's been crazy the past few weeks. I started working part time in August. 8 hours Wed, Thurs, Fri. And I get nothing done outside of work.
And I move in 2 weeks. Giving Wells Fargo the house. They can have it! lol
I wonder how I used to accomplish anything?? 45-50 hours a week and I did stuff. Now it's 24 hours and I sleep! But I'm still here, so..... Just gotta get used to the schedule now.
After 3-1/2 years of doing doctors appointments, I finally have something else on my mind. Like: wouldn't it be nice to be the one hiring a car to take to the airport for MY trip to Paris??

Great news! I, too, am now an advocate of getting this done if possible.
It's nice to have an alternative in your pocket... Mine is based on a breast cancer clinical trial... I'm waiting and will use it if the time comes.
It's wonderful to get encouraging news when fighting this monster. Hope is so very important.
Good luck!

Thanks for this info! I will definitely bring this to my onc's attention next time I'm there.

As far as insurance coverage... I think it depends on the ins co. But I had a nurse navigator thru AETNA that fought the red tape for some "non approved" care. I.e., PET scan, and my care at Fox Chase. AETNA wanted me to get med care at my capitated, local hospital, and it took her about 3 days to get through to them, but finally I was allowed to go to Fox Chase for everything.
Check with your insurance about such a person, if you don't have one. They are much better at navigating the system than we are.

Catherine,
Wonderful news! I love the word stable! And I completely understand the question of fight or maintain.... I think asking if there are any options like CK is a great idea. See what the onc thinks. Feeling good is a luxury most of us no longer take for granted, so I think this will be a very personal choice. Keep us informed: I can't wait to hear how things go!

17

(6 replies, posted in General Discussion)

Sandie, thanks for your post. We can't be reminded enough to stay positive and enjoy what we can. It's nice to read that you are back on the good side of the coin.

Sorry that this is a little long.
I have a friend who was recently diagnosed with pancreatic cancer, with mets to the lungs. She's about 60, going thru divorce, and now this. I'm trying to be there for her... I remember those days, although until recently I had forgotten how despondent I was. We've had a few long talks. She is embarrassed because she cries. I told her who cares? That's what you do when your world gets flipped upside down.
I'm glad to tell her, tho, that the docs don't know everything. I use the "expiration date" analogy with her, and say if the docs were right all the time I would have been dead over a year ago. Probably closer to 2 years by now!
I think I'm helping, and I'm glad. I wish I had had someone like me to talk to 3 years ago face to face. I know she has a much better look about her in the past couple of weeks. A few weeks ago she believed the docs when they said she was going to die. Now I think she has a little hope. And I'm happy to think I might have played a part in her new attitude. Is she still scared? Of course she is (so am I). But I saw her out enjoying things on Sunday... It was nice to see.
It's brought me back to thinking 3-1/2 years ago I was told a similar thing. And I believed the docs. I thought I was going to die. And I cried. And I looked like I was going to die. But I never felt sick from cc; just the treatments! One day I finally woke up and decided that I was going to enjoy what time I had left, still thinking it would only be a year or so.
Well, I had to go back to work last week! I've decided I'm not going anywhere and I need to earn some money!! The retirement savings need to be left alone, or possibly refilled a bit!! I guess my retirement really didn't start yet... I was using the retirement money to enjoy what time I had left, but since my time seems to be stretching out longer than anticipated, I better start thinking about a future!! big_smile

I didn't have proton beam, but I had SBRT, which I think may be really close? Targeted pinpoints of radiation aimed at specific cancerous areas... I had no problems with SBRT. They said it might make you tired, and skin might get dry in areas, but it was minimal or nothing.
I just read a bit on it, and it sounds exciting and encouraging. I hope he is a candidate. You will have to let us know how it goes.

20

(8 replies, posted in Announcements)

You can count me in.but my diagnosis was pretty straightforward. Let me know. I work WTF noon-7.

21

(11 replies, posted in Introductions!)

Welcome to our site. But sorry you had to join us. Yes, cc is scary. But there's hope for us.
I was diagnosed in March 2011 with unresectable stage IV cc and, although I wish I could have had surgery, I am still here and finally back to working part time!
There are many alternatives nowadays if surgery isn't an option, and MD Anderson is one of the best places to be.
Good luck and please let us know how things go.

22

(7 replies, posted in Members' Cafe)

For those of you who know me, you understand the quotes around "normal", as I have never professed to be normal!! BUT I am getting back into the workforce. My 3+ year absence from earning money has come to an end.
I went on a job interview for a PART TIME job on Tuesday, and started Wednesday!  Nothing fantastic, but it's money. And I refuse to jeapordize ss disability. They know my story, and will work with me.
It's interesting... I take phone calls to schedule private cars for transport to and from places, mainly the airports in the area. It will definitely help pay the bills, and is not strenuous.
I'll tell you this... This bod doesn't like 8 hours in an office without a nap!! 8:45 on Friday night and I'm going to bed!

Hi, cholangotango,
I agree, it's a great name!
And I'm so happy to hear the word stable! I also hope you keep us informed on all aspects of this trial, from keeping your dad stable or better yet, shrinkage, to any side effects.
Yes, cc is extremely scary, but at least the hope for a cure or stability is growing every day. And I completely understand leaving one onc for another facility... I did it after 2 years. Kudos to you for being such a great advocate! Good luck to your dad. It sounds like you're on a good track.

24

(9 replies, posted in Members' Cafe)

I'm not sure what I am... What family member is a "cookie", anyway?? smile

25

(6 replies, posted in Chemotherapy)

Duke, it is my understanding that as long as you had no bad reactions you can try the original chemo again. But your onc may want to switch it up as the tumor(s) may have built up tolerance to it.  Good luck! I live with stable!! Have grown to love that word!