kris00j
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Joe:
What a wonderful story. I was supposed to have my resection the same day as you, but it’s been put on hold since I was still suffering from pneumonia at that time and the CT scan showed the tumor had grown. I’ve since had 4 more rounds of chemo and pray nightly that it’s working and that God lets me have that elusive resection. I had another CT scan today and hope to hear good news tomorrow.
I am trying to put my life in God’s hands, but was not much of a church goer until a couple of years ago. I was trying to improve my life. About 6 months afterwards I was diagnosed. I haven’t yet gotten to the acceptance part. I try, but I still revert back to the “world of man” for lack of a better way of putting it.Anyway, thank you for the wonderful story. It brought tears to my eyes. What a great story. Prayers will go up to God that your radiation is as successful as the rest of your treatment has been.
And Derin: Happy to see you! I was wondering about you today. Was thinkiong of sending you an email to see how you are doing.
Hugs to both of you.
John:
HAPPY BIRTHDAY!!!! It’s so wonderful to hear good news like this! I will gladly have a month in the hospital for 6+ years!
Prayers and hugs for many more years for you.Okay, CT scan is done. Now for the hard part. Waiting!
If I don’t hear from Dr. Kemeny by noon tomorrow I am going to call her office to see what the story is. Supposedly the oncs and the surgeons meet on Thursdays but Dr. Fong and Dr. Kemeny never seem to talk about me unless I remind them to.
I called Dr. Fong’s office on Monday to let him know I was having the CT scan. Fingers crossed and prayers going up that he calls with a smile in his voice! I want to hear the word “shrinkage”!! And “resection”!! Both with no negative words in the same sentence!
You know how much I want to post in the Good News section. Hope you see me there tomorrow.Wilma:
We love to hear the good news, as most of us have stated in one form or another. But many of us have vented and asked questions on this site. It is for all emotions and news, along with questions.
I know you are still fact gathering, so I’m directing you to the new developments section. I am really interested in what Gavin posted today about Thomas Jefferson University in Indiana. While they say it is not a cure, it has worked to kill or shrink the cancer cells. I don’t know much about it, but you can be sure I am going to ask my surgeon and my onc about this. My surgeon might know something about it because he’s really into research. He’s one of the best in the country when it comes to dealing with cc.
And just so you know we really DO vent, and we really DO get scared, look in the general discussion(?) area. I’ve posted a few vents. Just recently it was “some people just don’t get it”, all about how people tell me I don’t look sick blah blah blah.
I hope you and your husband can find a place and a treatment so you, too, can publish in the good news section. It really does feel good to share good news, even if it’s just to say blood counts are good on chemo! We love to be cheerleaders for each other. And keeping a positive attitude, although really hard, is one of the most important things to keep.
I don’t know how I would feel as a nurse. You understand much more of what is going on, which is both scary and empowering. At least you don’t have to go home to look up things like “resection”. I had no idea what that was 15 months ago. I didn’t know a lot of things 15 months ago. and I wish I hadn’t had to learn but that’s how it goes…
A big hug and wishes for some good news for you and your husband.
Thanks Gavin, for posting this. Gives us more hope for future developments, too.
And Randi: I think that “2%” quote should probably be followed by words something like “of the patients diagnosed with advanced, inoperable stages” or something like that. Remember this is TV news and they like sensationalism. They’ve done quite a bit in the year since I was diagnosed. When I first started surfing the net, I found a site that said about 93% of all patients will be dead within 5 years. Someone, I can’t remember who, but it was one of the moderators, posted new percentages a month or so ago that gives us a 20% of living for a while with this. I plan on being one of the 20% and by then hopefully they will have more of a cure.
I’m going to talk to my onc about this, but since the tumor in my body is not in the bile ducts, I don’t know that they can try this. But I’ll go to Indiana if I have to!!!!Darin:
I missed this post somehow! Congratulations on your wonderful news! And good luck and prayers going out that radiation is tolerated as well as your chemo was.I’ll send you a private email if I can. If not, my email is kjacobson8@yahoo.com.
My suggestion would be to send your disks to Dr. Kato at NY Presbyterian. He is a miracle worker. He does ex vivo procedures. He literally puts his patients on life support and takes the liver out and cuts and pastes it back together before putting it back in.
Jim Wilde and Kim Cirucci have both been to him.
I know a number of others have contacted him.EDH:
While I don’t think they called my last embolization a bland embolization, I had something similar done in March to prep me for surgery.
First off, the tumor is located at the very top of my liver and has taken out 2 of the 3 hepatic arteries. It is wrapped partway around the vena cava which is the problem. And because of where it is, even tho it is small, will require removal of the entire left lobe of my liver. So they decided to do an embolization to prepare my liver. They blocked off the blood flow to the left lobe, including the tumor, and are hoping the right lobe is growing while the left is dying. It’s been just about 2 months, and Wed. I find out how it worked.
They don’t seem to be too concerned about the dying part of the liver. I’m a little concerned about that being dead in my body, but I’m taking my cues from the docs. If they aren’t concerned yet, why should I be? The side effects were pneumonia because she nicked my lung when she did the embolization. But I feel no discomfort out of the ordinary.
And as I stated in the other post, I think NYP or MSK are great hospitals.
Can I ask you why you have opted not to go to Sloan Kettering?EDH: Why aren’t you going to Sloan Kettering or NY Pres.?? They are both in Manhattan and are among the best for cc.
My surgeon is Dr. Fong and my onc is Dr. Kemeny at Sloan Kettering.
There are others on this site that sing Dr. Kato’s praises from NY Pres.As far as chemos go, we all react differently unfortunately. Some of us get great results fro certain chemo, and others have no reaction. And vice versa.
I started on Gemzar and Oxaliplatin. I could only handle oxy for about 5 cycles. June thru Oct. I can’t quite remember how many. Immediate side effects were extreme nausea which I let take hold. After about an hour I was fine. If I fought it I felt like I wanted to get sick for 3 days. The long lasting side effect for me was neuropathy which still hasn’t gone away completely.
I have a liver infusion pump as I only have 1 tumor (hopefully that is still the case: last scan had a question). So we used the pump finally for 3 rounds of FUDR which is nasty stuff. But going directly thru to the tumor I didn’t feel the effects. My liver did tho and I had some problems after 3 rounds.
So after a bunch of rounds of Gemzar, 4 or 5 rounds of oxy, and 3 rounds of FUDR my tumor had shrunk wonderfully and we were going to resect. I had an embolization to “grow” the right side of the liver by blocking off the left side and ended up with pneumonia. Resection cancelled. Tumor liked whatever happened, and ended up too large for resection again. Plus scan showed lymph node involvement and a questionable area. So back on chemo. This time Gemzar and Xeloda. I’m on my 4th cycle of Xeloda. Biggest side effect is burning hands and feet. No blisters, so I’ll bear with it.
This scan will hopefully show smaller tumor so we can resect. Dr. Fong will take 2/3 of the liver and the lymph nodes out and will do oblation on cells around my vena cava that he can’t remove. Hopefully he gets it all and I can get on with getting on.Sorry for the long summary for those of you who know it.
But EDH: Please think about closer to home. Both MSK and NYP are teaching/research hospitals with good cc docs. And it has to be easier to get there than Boston! Have you checked with them yet? Dr. Fong has office hours on Mondays. I love him. There are so many good surgeons at MSK that I would feel comfortable with any of them. And they do research. I have already signed all the papers for my cells to be used for research after pathalogy is thru with them. Anything to help find a cure!!!!!
And Gavin: It’s chocolate flavored vodka, so I really can’t have one. Maybe at Christmas if my resection is soon??? Maybe they’ll let me have JUST ONE drink???
Or maybe if I’m not on chemo I won’t even tell them! Ssshhhhhh!!!!Pam:
I’m glad you had his number to call!! I was just saying I tend to put off calling unless my temp is 102 or something. Having pain in the left part of the chest is pretty scary. At least by talking to him you put your mind somewhat at ease.And I can just imagine the fun she had in the car! I probably would have floored it, too!
Pam:
Lauren is amazing!! But tell her she can’t have the weird side effects: that’s for me to get!!!
It’s horrible when you get the side effects that aren’t on the charts, because you don’t know whether to worry or not. I usually choose the “don’t bother the doctor” side if I’m going to be seeing my onc in a day or so. If my appt. isn’t for a while I usually wait a day then call if whatever it is hasn’t subsided. Unless, of course, it’s really scary or painful.
I’m jealous she got to drive that car! What a great friend you have there. I know that for him it’s something small (unless the car is his first love) but for Lauren it was probably a lot more. Thanks for sharing that story on your blog.Thanks for letting us know, Pam! I’m happy she’s doing so well. And, yes, the top of the liver is tucked under the rib cage and does go to the center of the body. Mostly under the right breast, but it does hit the center of the body.
Tiff: One of the posts is the top on in New Developments. But I signed onto that website and still couldn’t read the entire thing. They say to take it with omeprazole and Tamoxafil (sp) to fight cancer cells.
thanks. I take omeprazole daily because of the pump. I would like to hear more about this DCA tho. Especially if it helps us. So I want to ask her when I see her next week. I take a multi vitamin, but she doesn’t like me to take “supplements” so I would have to ask her about extra D3. It can’t hurt, right??
