joolz822
Forum Replies Created
-
Posts
-
Jim Wilde wrote:Has surgery been totally ruled out by an expert? I spoke with a girl today who had been told her cc was inoperable. Long story short, she had a complex ex-vivo procedure done by Dr. Tomoaki Kato at NY Presbyterian in NYC. She’s clean now six months from surgery. His contact info is here:
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=3126&p=4Previous to CC I had a run of the mill liver cancer and was operated on. They took half my liver. I have nothing left to operate on! My liver now is filled with tumors. I also have a tumor at the base of my spine, my lymph nodes are involved and so is my pancreas. Surgery is not an option.
Fox Chase called with two tentative appointments. One is on March 10 with the doctor Wilson recommended and the other is Feb 25 with an alternate doctor. I have to give my answer on Monday. Bruce and I will discuss.
nur1954 wrote:Joolz –Also, you might consider starting a blog so that you don’t have to email and call everyone. You can put up one post and folks can check it to find out your latest news. My son found that very helpful, as writing the same thing over and over got to be too much for him.
Best wishes – Nancy
I already use Facebook for notifying a lot of my contacts. I keep a Live Journal and also re-use the same email over again. Yep, there are shortcuts!
Kristin wrote:Andy, that’s TREMENDOUS! We’re so happy to hear your story. And it’s a big help to me personally. I’ve been putting off chemo as long as possible, because so many people assume it “won’t really help”, but now my oncologist is saying it’s really time for it. Hearing your experience is so encouraging for me. Thanks so much for posting it. And welcome to our group!My best wishes to you,
Kristin
Why would you put off chemo is that’s the only treatment that’s available? My CC is inoperable so it’s the only option available. Yeah, chemo is no cakewalk. Side effects can be miserable but if it’s all I can do, well, I’m not going down without a valiant effort.
kathyb wrote:Oh yes. I was put on dexamethasone for nausea during chemo. It worked like a charm for that, but I also gained weight I did not need to. Wanted to eat all the time
I have lost so much weight that they want me to gain. I think I’m more surprised at this than getting cancer! It may sound ridiculous but it’s true.
It’s difficult to tell you to be strong when your world is crashing around you but somehow we all find the strength to carry on. Don’t forget venting and having mini-melt downs are very important too. You can’t keep the bad feelings bottled up. Not healthy for you and your loved ones.
As Lainy said, do tell the Nurses about your Mom’s pain. There is no reason why she should have any.
Maria wrote:For me nothing works against nausea like ginger. Fresh ginger in a tea strainer + hot water. I take it with tea and sometimes honey. Works better for me then pills – and no sideffects.
The flu-feeling I combat with yoga and physical training. Works for me too.
My strategy is to push back when these sideffects strikes. Of course thereI asked my oncologist about homeopathic treatments but she was dead set against it. I decided not to look further into it.
Thanks for the suggestion, Nancy246! I’ve been making milkshakes with whole milk, strawberries and/or blueberries and ice cream. (Bananas are evil.) It’s very filling and tastes great. It’s just sometimes too cold to drink though. *g*
It’s a kicker though. First time in my life I can actually eat anything I want but can’t. Life sure does throw you curve balls.
Charlea wrote:I had steroids during my chemo to prevent nausea and they worked like a charm as I had no nausea and maintained my appetite throughout. Fatigue was my biggest problem and cooking the foods I like best took energy so had to push myself. There are several meds that can increase appetite including marijuana. Good luck with your efforts.I am a great proponent of medical marijuana. It helps so many people and is good for a lot of different diseases. I’ll be perfectly honest, at this point of my life pot doesn’t give me the munchies anymore. *g*
I’m finding just the preparation of food makes me tired but if someone puts food in front of me I’ll eat it. Time for a personal chef, eh? Although tomorrow I am going to try and make home made soup. Perfect weather for it too.
Thanks for your suggestions.
I honestly have enough meds to counteract any nausea and they work great… thank goodness!
About five years ago I weighed over 300lbs (I’m 5’8″) and gradually lost 150lbs over three years. Then in 2009 I’m diagnosed with anal cancer and then liver cancer. Three surgeries, radiation and chemo later I lost about 30 more pounds. Cancer free for seven months and now I’m dealing with CC. I’m now down to 120 something so it’s very important that I eat to keep up my strength. Hopefully this drug will just make me want to eat something which is better than the nothing I’m consuming now.
Luckily the excess fluid is going down by itself and I don’t need any meds or drains to deal with it. I’m hoping it stays like this!
My oncologist got all up in arms about my feet/ankle swelling so I Doppler test on Thursday. No blood clots which is a very good thing.
They started me on dexamethasone the other day. Anyone take this too? It’s suppose to increase my appetite. I doubt anything will help it.
Jimi Hendrix sang ” ‘Cuse me while I kiss the sky.” Could be in the same vein.
Sorry about the shaking. That has to be tough for her.
Doylestown is being as aggressive as they should be. I do not feel a lack of attention nor second rate care because it is not a big-name city hospital. The oncologists there also belong to the Penn State network so I’m getting the benefits of their research too.
The only talk about radiation is what I brought up. I do not want it. I had the most dreadful time of it during the series they were giving me when trying to get rid of my anal cancer. It was just about as bad as recovering from my three surgeries.
Actually I like the Steelers, Giants and the NY Yankees. While we’re lived in PA for many years I was raised in NY and still owe my sports allegiance to them. *g*
