kris00j
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Byron:
I think I’ll be pulling some too. Having my own issues to deal with. I will say that I have had twinges since cutting off blood flows to this and that. My one onc says it’s easy to attribute to dying cells. What he said is it’s scar tissue because the tumor was shrinking. Great thing to believe in!!!!
I am so sorry you got bad news about the chemoembolization. I hope you find a good trial.
And I understand about the wanting to disappear. I want to keep people updated but the past few days i just want to crawl under a rock.
My hopes and prayers are with you, along with lots of hugs,I’m now an official drug addict. Got scripts for Paxil and Xanax. Of course, they are BOTH hard on the liver…. go figure.
Sometime next week I get to talk to someone about radiation. I want to go to Fox Chase Cancer Center because they are so close to me. I hope Aetna will cover it. I guess I should call on Monday to see.
In a nutshell: Dr. Fong says the group of nodes (known as 1 node) is too large to do anything with. It is where my intestines or colon and my pancreas and my duodenum and my GOOD bile ducts all meet. It has kind of worked itself around them. Probably stuck to some or all of them. He says surgery would not be a very good option. If necessary he would try it, but he wouldn’t hold out much hope for success. He would have to oblate much of the cells and might do more harm than good.
1st choice: clinical trials. I could be a guinea pig with no guarantee of success.
2nd option: a surgery that Dr. Fong says would probably do more harm than good.
3rd option: 5 weeks of radiation. He says he would give it at least a 60% chance of success. He said he would tell anyone in my shoes to go this route. And imagine him a surgeon!
What really scared me was he walked in and said he hadn’t expected me to look healthy. What? I think he was expecting a jaundiced sick person. He says the node is getting really close to my good bile ducts.
He also said if I had looked like he expected me to look (sick) he might not have given me much hope, just told me to get ready. So I think I’m going to take the small hint and make sure my affairs are in order. Not that I have that many to get in order, but I HAVE been putting it off.
Not that I expect to die. Hey!! I’m still one of the healthy ones! But this node is scary big! And Xeloda did nothing but help it grow, it seems. I asked why oxaliplatin worked on both nodes and tumor, and the Xeloda just shrunk the tumor. He said that many times when the cancer lands somewhere else it mutates to another form of cc. So when Dr. Kemeny comes back on Tues. I will also ask her what she thinks: radiation or cisplatin? I can’t take the oxy because of my neuropathy, but maybe cisplatin? Or a lower dose of oxy for a few sessions? Or should I go with radiation????? Should I flip a coin??? (joke)
I am so confused, depressed and lost right now. So I had to get “happy pills”. I don’t know what to do. I just wish I knew which way to go.
I have asked God to help me thru this and let me know what he wants from me. I haven’t heard clearly enough. Tonight I’m going to ask him to hit me over the head with what he wants from me…I have a feeling it is the “cancer of the year” from everything I’ve heard lately. Not only are our members increasing, but when I go to NY I usually find 1 or 2 people there with it or with an “as yet unknown” cancer around liver.
I know I have to wait to talk to Dr. Fong. You never know how different his sentences are from hers!! So I was all depressed by how she said what she said. And I know I have to wait to hear what HE says.
That and get a script for Zoloft. Can’t handle life alone right now. I want some happy pills.
I am SO hoping she really messed up his message (wouldn’t be the first time) and he wants to try getting everything out. Not sure why he would have trouble removing the lymph node since the one I think they were talking about is basically surrounded by my dying left lobe??
I dunno. Can’t guess anymore. It just drives me crazy. So sleeping pill has been taken. A friend insisted she go with me. Mom will be happy.
I hope to post at least “Fairly good news” tomorrow!!!!! Please God???Thanks for the info on sushi. I’ve tried it ONCE. that was enough. But I will be more careful that any fish I eat is cooked thoroughly. I know, that’s closing the barn door after all the cows have escaped, right?
When is the convention in Philadelphia? I can’t remember.
Friday. I don’t know the time yet. But in Dr. Kemeny’s words “if he can’t get the lymph nodes he’ll mark me for radiation”. He might not even do the resection right now… It’s so frustrating!!
And I really thought I was gonna get to post in good news again!Cathy
I think I already wished you an early happy birthday a couple of weeks ago, but I’m more than happy to say it again!! You give hope to all of us!!! Thanks so much for sticking with this website and giving us all hope.
Hugs and cheers!!!Helen:
Good luck with your decision. I will not blast you for any decision you make. It is a hard enough thing to deal with. Some people have posted positive results with herbal or “alternative” treatments.
I hope your decision is the correct one for you.Hugs,
Julia:
I’m so sorry to hear about your sister too. My prayers are with you and your family.
Hold your memories close and tell your sister it’s okay.
KrisPepehorse:
My heart goes out to you and your family. I am so sorry. You are right: this cancer sucks!
But please try to put tht aside and be there for your dad Remember the good times and tell him it’s okay to let go. He will always be with you.I know it isn’t much, but you and your family are in my prayers.
Tiffany: The bilirubin is another way of knowing if the liver is tolerating chemo. I wouldn’t worry about it. Mine is usually around 0.8-1.
And it can drop depending on what you eat, etc.
Celebrate your wonderful CA-19-9 numbers and don’t sweat the bilirubin, okay??Cindy: prayers and good wishes going your way for tomorrow!!! I hope to follow you on the good news posting. I wish I had an onc appt. tomorrow.
This waiting a week is nuts!Nothing for the good news section yet. All I know is there is “nothing emergent” in the scan and Dr. Kemeny does not discuss scans over the phone. I reiterated with the nurse that I want her to talk to Dr. Fong so I know how they both feel about the scan. I guess I get to wait until Wednesday…UGH!!!!!
Be proactive! You have to be! Even the best doctors drop the ball on some patients.
I don’t know Dr. Alfa. But I’ve heard of Katheryn Goodman. I don’t know why since radiation is not an option for me. Is Dr. Alfa at MSKCC? If so, maybe we’ll be there at the same time. My next appt. on the 5th floor is next Wed. I want to switch back to Mondays ASAP tho, because it’s easier if I have to meet with Dr. Fong also. Then I only make 1 trip.
