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Denise,
I, like Lisa, avoid lots of processed foods. My surgeon said anything with sugar, dextrose, sucrose, fructose, etc… in the first five ingredients is something we should avoid. I have also cut many meats out of my diet, as they feed tumors.
I tried juicing, but didn’t like it much. I have found smoothies taste great! Spinach doesn’t have much of a taste, and you can add fruits to your taste. And aloe…Sandy,
Sorry to hear all of this! I love Dr. Fong! I miss him, but not enough to go back to NYC.
I had night sweats from day 1 of chemo! They lasted about a month or so. I finally figured out a short cut: I laid down on a sheet and wrapped it around me. When I woke up drenched, I tossed the sheet aside, toweled off and got into a nice dry bed without all the hassle of remaking it!
Dr. K is brilliant: not my cup of tea, but she was one of the first to use oxaliplatin instead of cisplatin, I think. It’s not as hard on the body, and I think the results are proving to be as good or better!
Now, for practical purposes… Get the gloves and scarves out: he’s gonna need them. And socks. No touching anything out of a freezer for at least the next few days! And I hope Dave can get used to drinking room temperature drinks: I did! The oxy affects the nerve endings and you can’t handle cold. Even in the supermarket. Even getting eggs out of the fridge. It’s annoying, but manageable.
I live alone, and learned to put gloves on to get food out, then set it on the counter until it warmed up a little. It sure beats the alternative!
Now to watch those pesky Tumors shrink!!Tell your mom I’ve had mets to my lymph nodes since Feb. 2011. And I’m not giving up! Some chemos work great on certain mutations. You just have to figure out which one works! And it can be tough, physically and emotionally. But I for one am not going down without a fight! I still feel great: can’t believe I’ve been told I’m inoperable and “very sick”!! And I won’t stop living…
Different radiations work, too, depending on where the tumor(s) and nodes are. I had stereotactic. Others have had y-trium(?). If she can believe it will help, that’s 1/2 the battle.
I have accepted the fact that I will die WITH cancer. I no longer accept that I will die FROM cancer.I don’t know when this will go to phase 2. They are not getting a full allotment of cc patients. I think they had 5 people last month. And one had to leave the study due to health issues.
I myself am having a great response to this. The cancer cells are stable and my blood work is wonderful! They check kidney functions, too. No probs. the only issue is a slight effusion at the bottom of my heart. We are watching that.
I’m hoping there’s enough data to continue this and possibly get to phase 2 soon.Hi,
My two cents: I have heard little that’s good about CTCA. AETNA doesn’t even recognize them for insurance purposes. And Mayo has an excellent rep with cc.Good luck and God bless.
Ports are wonderful! Chemo is hard on the veins.
As far as I know, you can get a second opinion while on chemo, but they will probably want you to stop before you transfer your care. Or they might pick it up. I know for most surgeries, you have to be off chemo for a few weeks at least.
Good luck with Mayo!!Good luck with your scan. Yep, I think we all get anxious. No matter how many we have had. I hope you get good news and can get a plan in place quickly!
Hi, sorry I didn’t respond earlier but I was working then singing in a karaoke contest. (YEP!!) here’s an attempted short version of Feb 2011–present.
When I was diagnosed, there were mets to lymph nodes. With the Gem/Ox, the nodes had no more visible signs of cancer, so I was supposed to get the resection. We did a portal vein embolization to kill off the left lobe and grow the right. As this was done, my right lung was nicked, causing a pleural effusion. So the surgery had to be postponed. As we waited, new nodes blew up so the surgery was basically cancelled. On Gem/Xeloda, the tumor in the liver responded, but the nodes didn’t care that I was on chemo. They continued to flourish. After 2rounds, I was told I would never get surgery, and that I should have been really really sick. And I felt fine!
Stereotactic Radiation did a great job of stopping the treated nodes/tumor for 9 months, when it spread to another node.
That’s when I entered this trial. And all is quiet. Stable is a word I have come to accept.
I still ride, although not like I used to. I bought a scooter. But I’m thinking of getting my big motorcycle back up and running! I sing every chance I get. I have heard music is wonderful, and doing something you love releases endorphins, which fight disease. So I sing. Wherever and whenever I can!
Keep up the positive thoughts! And do whatever you can to enjoy life. That’s what I tell people. It’s my mantra.Doreen,
While I am not cured, I have been living with this for 2 1/2 years. I have almost never been sick. The only complications I have had are from chemo and/or procedures we tried.
I have been through different chemos, radiation… No chance of surgery. There was a brief time I had a resection scheduled, but the chance got taken away.
BUT I am living with this. I am in a Phase I clinical trial using an inhibitor drug. After 3 cycles, the disease is still stable. No new growth. And no major side effects.
So, while I am not cured, I am not sick, either. And that’s after 2 1/2 years. Stage IV since diagnosis.Percy and Linda,
This is a part of the study I’m in. They test blood work and do ct scans every 8 weeks, using the results (good or bad) against the genetic markers. I, too, think this is going to have a huge impact on future treatment.LOVE LOVE this!! I am so so happy to read this! Go enjoy your beach time… No sun burning allowed!
This is the most fantastic news! I am so happy for you, all I can do is cry!!I used to apologize to the boyfriend I had when I was diagnosed, too. I used to say I knew he didn’t sign up for this. It’s a tough thing to think about. But those that count will stick around (he didn’t, so he doesn’t count in my world anymore). And they won’t want our apologies.
We are all here for you. Please let us know what your next course of action is.
