next CT scan on Wed.
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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!!!!!
Kris and betzeegirl… Dr. Abou-Alfa has vast experience with bile duct cancer. You may read up:
http://www.mskcc.org/cancer-care/interview-ghassan-abou-alfaAdditionally, you may look at a presentation by Dr. Abou-Alfa on our site:
http://www.cholangiocarcinoma.org/media.htmHugs,
MarionBe 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.Kris! I’m hoping you hear the word “resection” from Dr. Fong too! We saw him this past Monday. We really love him. He was very encouraging. I went ahead and hooked us up with hepatobiliary oncologist Dr. Abou Alfa, and Fong seeming to be happy about that. Also, at the recommendation of Percy Leung (moderator on this board), I suggested that we get a radiation oncologist as well and he recommended Kathryn Goodman. I was sort of surprised that *I* had to be proactive with all this, but I’ve learned that’s what needs to be done! (I’m empathizing with your needing to remind your Drs to chat with each other!)
Kris,
Here’s sending all of the good thoughts and prayers I have and hoping you scan results are all you hope!
Hugs
-Randi-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.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.We have seen two Doctors there, an oncologist who says we should hold the course of treatment that my husband is on and a surgeon who say my husband is not a candidate because he has a very large mass on the right liver and two small ones on the left. His condition is stable on cisplatium/Gemzarand. We want to improve. We have asked about a transplant and have been told they are few and that my husband probably would not qualify.
We are at a loss for what to do next hence our out reach to Dana and John Hopkins We also met with a local interventional radiologist who did a map procedure for Y90. My husbands shunts are too long 21. Standard is 20. He recommended bland embolization, but my husband got so sick from the mapping because the Dr. Had to seal off an artery to the stomach. And that caused my husband tremendous pain and a 3 day hospital stay.
I just don’t know what to do next. We would like to work with someone who specializes in CC oncology. I don’t know if I will be successful I. Getting my husband to return to MMSK. He was a bit put off.
We need a creative miracle. Thanks for listening.
If anyone has suggestions, we are open.Hi Kris,
Chocolate vodka, ooooohhhh……. I seem to remember having a few of them many many years ago when flavoured vodka’s became all popular!!! Indeed, even some of the bars here introduced flavoured vodka stands inside of their bars and clubs! If you have one at Christmas then your secret is safe with me!!!
Hugs,
Gavin
PS – How about some chocolate milk, ice cream and crushed ice? Shaken and not stirred as 007 would say!
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!!!!
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