1

(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!

2

(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.

4

(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!

8

(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.

11

(8 replies, posted in Announcements)

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

12

(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.

13

(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.

15

(9 replies, posted in Members' Cafe)

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

16

(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!

I never had cisplatin so I can't specifically say, but I did have oxaliplatin. And I had nausea after the third round. And, yes, often I had to RUN to the bathroom! The dry heaves were worse for me,so I stopped the anti nausea drugs and just let it roll. After an hour I was fine.
Normally, unfortunately, once you've had the side effect you don't lose it. Hopefully it doesn't get worse.
Keep on keepin on! You WILL get thru this! Cheering for you! Praying, too.

What great news!! LOVE LOVE LOVE reading this post! Here's to more clean scans and a great lessening of scanxiety!

19

(22 replies, posted in Introductions!)

I had the sequencing done, and have yet to receive a bill. So I'm hoping Medicare and my supplement covered it. I agree it has a long way to go, but the day is near! In 3 years, so much has changed!
From the sequencing, as mentioned above, it was determined I have the same mutations as some breast cancer. And there is a trial specifically targeting this mutation. So, while the trial I am on is still working, my onc and I have decided to let the many breast cancer researchers and fighters do the first part of the breast cancer trial. I will wait and jump to that trial when the time comes.
And, I will have to add that you may have to fight for coverage from your insurance company for non-approved treatment for cc. It can be a pain, but use your onc and staff, and your insurance company's nurse navigators.

Great news! I'm happy for you! Please keep posting your good news on here... We love reading it!

21

(5 replies, posted in Thought for the Day)

Lainy, here's my easy... She doesn't eat the gravy!! If you don't have time to experiment, apologize to her that it is not gluten free. Sounds yummy, too! What time is dinner? If I leave now I might make it! smile

22

(15 replies, posted in Thought for the Day)

Happy, happy birthday, dear Marion! Sorry I missed this yesterday. I hope you had a fantastic day, and many more wonderful birthdays ahead!
Hugs,

Lainy, good to hear you enjoyed your lunch! Always fun to meet new NICE people, whether it goes anywhere or not. I hope it does, for you. You deserve happiness (not that you aren't happy, but...)
It was only mid nineties here yesterday. Chilly for you! lol

You can find humor anywhere! smile
Good luck with your date. May he be better than my last one. Actually, he was nice. Just not for me.

Hi Helen, sorry you had to find us. I, too, think your post was beautiful. I try to remember to appreciate every day I wake up, also. If this journey has taught me one thing it's that you never know what's around the corner.
I'm sorry Bonnie is declining so rapidly, but am glad she has her family and a very special friend to support and love her.
My thoughts and prayers go out to you and Bonnie.