kris00j
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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!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.
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!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.
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.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.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.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!
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.
