A kick-in-the-teeth day
- This topic has 13 replies, 10 voices, and was last updated 13 years, 8 months ago by
.
-
Posts
-
Joolz…..The rollercoaster of this disease sure keeps us on our toes, doesn’t it?
Good luck with your next visit. If then you choose to search for more opinions from specialists treating this cancer then please, let us know. We are all in this together.
All my best wishes,
MarionJim 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.
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=4Dr. Kato did a relatively simpler procedure on me almost two years ago, and so far I’m still clean. He’s a wonderful and very competent doctor, and as far as I know, the only one in the US doing ex-vivo procedures.
Each of us have to make our own choices. I wish you well in your treatment, whatever it might be. Good luck and bless you.
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.
Joolz,
Sorry to hear that the gem/cis combo didn’t work. Hopefully you can regain some strength before starting anything else. I share your not freaking out mode. It doesn’t do any good does it. Thinking of you.
ShariJoolz: Perhaps you should consider creating a Caringbridge.org site for yourself? I started one for my husband Tom when he was first diagnosed and it has been a lifesaver! No more repeating the same thing over and over to family members (unless they don’t have a computer!) Then everyone gets the same information and they can also offer support which is necessary for both the patient and their caregiver!
So sorry to hear that the Gem/Cis combo did not work for you. Personally I would start looking for other docs or other cancer centers or at least ask “What else can we try?”….
Go with God, prayers coming your way!
Margaret
Joolz,
I am sorry to hear that the Gem/Cis did not work, did they mention any other chemo combos that they could try? I know that today is not a good day for you and that you feel numb, but please do not give up hope. Hopefully Fox Chase will be in touch soon and then you can see what options they have available to you.
Sending a load of positive thoughts your way,
Gavin
Joolz…
Somedays it just doesn’t pay to get out of bed! I’m sorry it was that kind of day for you. I guess the good news is there is a plan “B”.
There ARE other chemo combinations and I would always look into clinical trials.
I (like Lainy) enjoyed the mental picture of a hovering husband!
I understand how hard it is to keep everyone informed. I used everything from phone calls to emails, to mass emails, facebook and twitter to keep everyone up on my Mom’s illness. You sound as if you’ve got all of the shortcuts in place.
I’m sending love, hugs and tons of prayers your way! Hang in there!
Pam
Dear Joolz, I strongly agree with all that has been said. We never really know what is around the corner for us and perhaps you are meant to have a different Chemo cocktail that will really do the job. I used to put everyone on one big e mail at the end of the day with “Teddy Updates” as I never learned the Blog and envy those of you who are computer literate! I like the way you write and it shows your great attitude. I chuckled as I can picture your husband hovering. I know you will keep us posted and I am hoping for the best!
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!
Joolz – One of the wonderful thing about clinical trials is that not only might you help yourself, but others as well, since so much is learned during a clinical. Ifyou husband is nervous about it, that is understandable. I can only tell you that you will not be made to be a “guinea pig.” They monitor you very closely and stop the treatment if it is not working or if you are not tolerating it well.
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
Joolz….so sorry to hear of your non-responsiveness to the current treatment. I agree with Maria and we have seen it on this board that several of our members have had similar situations and that most found answers with some of the other treatments available. I am wishing the same will hold true for you and for spring to give you another head start.
All my best wishes,
MarionWent to Wilson’s the morning expecting chemo but instead came home with a “no more chemo for you.” Why? Because my MRI results came back and they are not good. The tumors have grown by at least 20% and I have new ones in my liver. The Gem/Cis didn’t work at all.
Wilson is making arrangements for me to be seen at Fox Chase here in Philadelphia. She said I am a good candidate for a clinical trial because other than the tumors, all my levels are fine and I’m in good health. (How’s that for an odd statement!) Hope springs eternal and just perhaps they’ll have something for me.
My husband, Bruce, is hovering but if the tables were turned I’d be doing the same thing.
Perhaps now that I’m off chemo my extreme fatigue will disappear and I’ll be able to manage your basic household chores. I certainly hope so.
I guess I am numb. Spent the day on the phone and emailing family and friends. I’m sure others will agree when I say how tiring this is.. to repeat the day’s events over and over again while trying to stay positive. As I mentioned in my Introduction, I am not one to freak out because it would be a waste of energy. This is not to say that I don’t think I should. To hear that I have new tumors and the chemo is not working is surely reason enough for one!
Wilson commented on how rare this disease is. Should we all celebrate?
I await Fox Chase.
- The forum ‘General Discussion’ is closed to new topics and replies.