kris00j
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How awesome is this???? I sure hope they let this get out into the world. What a great, smart, wonderful kid!! He should go far!
Tiffany:
I think you are in great hands. I have never heard anything good about CTCA. My insurance won’t even discuss them.
If you want another opinion, I suggest you try Sloan Kettering or Columbia Pres. The good thing about that is if you can see drs. at both places, you make 1 trip and make a decision… they are both in NYC.
I know what you are going thru, girl. What if…. what about…. why me…. why doesn’t this work….??? WE all have the same problems and questions. I don’t think any of us are wanting to hang it up and call it quits, but we have to trust that IF we like our doctors, and IF they have such great reputations, that we are getting the best knowledge out there for a disease where there isn’t a whole lot of surety.
I think I told you Dr. Fong said every time the cc cells land in another place, they tend to mutate, which makes certain chemos work on some tumors while not affecting others.
Unfortunately, we were all dealt a bad deck. We are basically guinea pigs. And I for one tend to be a very tall standing guinea pig when they come up with a cure. I believe in my doctors (although Dr. K has no personality) and I believe they are trying to do the best by me. And I believe if they get stumped, they have colleagues that they talk to. I have to believe that. It’s what keeps me going.
You have to trust that they are trying to do all they can for you. They’ve adjusted your chemos, they’ve tried new ones when you had adverse reactions, they are starting to discuss Y90 radiation. You have lots going on. And yes, it’s hard to sit and wait for them to catch up. But please, try not to stress on it too hard, because stress isn’t good for you!!!
Call me if you need to talk. I’ll keep my phone near me…
Love ya gf!!Mark:
I’m so sorry to hear about your dad. I, too, had progression with Xeloda. There are so many other chemos. Has the dr. talked to you about any other chemo regimens?
Of course, much of the decision making is based on your dad’s health. If he has other issues, they might not want to use some of the other chemo regimens.
But ask the onc about choices. Oxaliplatin with Gemzar worked wonders on my tumor, but it is very, very hard on the body.
Get a second opinion if you need to. Like Marion said, there’s no expiration stamp on you dad’s feet, and if he’s otherwise healthy, then you need to look into as many options as you can…
Good luck and hugs,Good idea Audrey. And since I’ve met with her before she might talk to me…. I don’t know: I think I’ll just listen to the docs and see what the Fox Chase doc says. He should be looking at all 85 lbs (sarcasm) of paperwork Monday I hope. He has a lot to wade through. Honestly there is about an inch of papers and 10 discs or so… I hope he has all he needs…
I also want to meet with the “regular” gastro onc at Fox Chase and see what he says.Randi:
Don’t feel guilty! I want that hope that maybe I’ll get to post something similar in a couple of years. I just hold out the ope that the longer I fight the better my chances are that someone somewhere will find a cure. Who knows? In 2 years we might be able to all post good news. Or 3 or 4. I just hope and pray that I’m alive to see it. And to say it.
I’m sure everyone reading this agrees with me. (and yes, I am jealous!!! But I wouldn’t take your good news away from you for the world!!!)Hugs,
I heard back from my surgeon today. He was in surgery all week so couldn’t get back to me…. Guess what?? His version of my CT scan differs from Dr. Kemeny’s. She said the nodes were different and I shouldn’t try oxaliplatin. She doesn’t want to give me oxy because of the chance of nerve damage. I understand that.
But Dr. Fong said it’s probably the same node(s) as last year. He DOES, however, suggest I do radiation instead of going back on oxaliplatin. He says the chances of it responding to radiation is very good. And I have the oxy to fall back on if it doesn’t work.
So I got all the stuff to Fox Chase today (except the pathology slides). Hopefully this all gets going within a week. This is taking quite a while, and I’m getting nervous about how fast the nodes grew already….I just wonder why Dr. K misinformed me?????
Randi:
YAYAYAYAYAYAYAYAY!!!!!!! I’m so happy to hear good news!!! 6 months from now you’ll get to post this again, but change the number to 3!!!! I can’t wait to hear it.
Hugs,Mary:
While words cannot console you, know you and your family are in my heart and prayers.
Hugs,
KrisJose:
My sympathies are with you and your family at this time of sorrow.
Words cannot describe how moved I was reading your tribute to your sister.Hugs,
KrisMarion:
Thanks for the link. I brought it up to my one onc today. He said he’s seen it, and he would be happy to prescribe it for me, if my main onc says it’s okay.BUT
I want to tell people it’s very similar to Paxil so if you have adverse reactions to Paxil be prepared.
I want to talk to my other onc to see how similar they will be. I took 1 and only 1 Paxil. I had the strangest hallucination on 1 Paxil. Not going there again!! I’d rather be depressed…..
Unload all you want!! It’s awful to go to the dr. expecting to hear good news only to find out you were wrong. I know the feeling all too well, and have had my share of vents. And I also understand having an onc with the personality of a rock. My main onc is like that. Brilliant, but not friendly at all…
I wish your mom had gotten better news. I don’t know anything about the “omentum”?? I hope someone here can give you some information and a little support.
My only pertinent comment I can say is to tell her as long as she keeps feeling good she’s proving the docs wrong. That’s my story and I’m sticking to it!I will keep your mom and your family in my prayers. I hope something can go right soon for her.
Audrey:
Maybe we can team up and get something started!! There are a few of us in the area. I can’t remember who (darned sieve brain) but there’s someone around Easton on the NJ side. And I think 1 or 2 others within 50 miles or so.
Depending on how I feel starting with this dang radiation, it might be a good thing to try to do in the fall??? There are parks all over the place where we can rent pavillions. Maybe even find a cancer foundation that will donate their area.. We have a Gilda Radnor place near me. I don’t know what they do yet, but I’ll check them out. Maybe I can get some help from them with ideas.
And I belong to a motorcycle club. Maybe we could figure out how to incorporate it with that, too.
One idea might be to talk to a bar that has a bike night and see if we could expand it one night and have a band, fundraising, etc…. worth a shot, maybe???
Maybe we can talk about that when we meet tomorrow!! Looking forward to it.
KrisHelen:
I, too, recently cut out added sugars and am trying to stay away from processed foods and meats. My decision is not permanent, however. Well, parts of it, anyway. I will go back to meats eventually, but will try to find free range around here that I can afford. It’s SO expensive to try to eat healthy.
I agree that the processed foods, fast food, and “ease” of it all is what has caused this rise in cancer. That, and many people that would have never been diagnosed previously are now being diagnosed. I think many people that would have died otherwise are now being “caught” beforehand with cancer.
Anyway, now I digress.
The tumor in my liver has reacted well to chemo. Unfortunately I have a group of lymph nodes that they call 1 node that had absolutely no problem with the chemo. I think it rather enjoyed the experience. It has exploded in size even while on Xeloda. My surgeon was astonished that I am not sick, either. He basically was ready to tell me to put my affairs in order until he walked into the room. We are now going to try radiation. In the meantime, when asked, he suggested strongly that I cut out any food that has sugar, high fructose corn syrup, etc. in the first 3 or 4 ingredients.
Tumors feed on sugar. They also feed on meat proteins. So, for the next couple of weeks, until I get a schedule in place, I will be a mostly vegetarian.
You might find this link interesting: http://www.eattodefeat.org/
