lainy
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Hi Pauline and all you lovely ladies. I could NEVER attempt to give advise on something I have not experienced but if I may say one thing. Is this what Anthony and other husbands would want? I believe he knows more than you think, how you are feeling and because you had so much devotion between you I am positive that he does not like seeing you so tormented. I feel just as much as you miss him, he is feeling badly about your sadness. And I do have a little story about heaven that made me a true believer. My dad passed on at the age of 93. He never believed in the beyond, magic nor anything he did not understand. He was a total skeptic. He fell deep asleep and we had to call the Paramedics to wake him. They had trouble and finally did the dreaded breast bone rub. Dad bounced awake and with wide eyes proclaimed, “I just had the most beautiful dream, I saw heaven”. It did not upset him in fact he was quite calm. The next day he passed. I became an instant believer. What I am trying to say to all of you, Darla, Sue, Pauline…is that just because your loves are out of sight does not mean they are far away and they want your happiness above all else, of that I am sure. I hope I didn’t intrude on you but I feel so sad for you I just wanted to say something!
Hi Kristen, how interesting that your dad became a violin maker. Teddy’s dad was a Master Mandolin player, wrote music and taught. Everyone knew of the little music man from Sicily! If you just go to Cyber Knife on Google you will find a wealth of easy to read information. I am not a medical person and always look for easy to understand! Even in the last 6 months C.K. has advanced. When we first started this cycle, you had to be sedated (so you lay very still) and now that is not a fact. You go in for 90 minutes like 3 days in a row and you are DONE! The tumor does have to be 6CM or smaller which is why Teddy had radiation first. We are just waiting to be called that everything is set up. Hopefully it will be mid December. By the way…I could never be a good doctor…I have no Patience (patients)! A little humor there!
Kristin, there is always hope. Everybody on this site has to have hope. Without hope they could not even try to help each other. These are brave and caring people who live with the hope that better treatments are right around the corner. It would not be fair to you though not to let you know all aspects. This is all still so new to you and other new members and we realize how scary it is and was for us in the beginning too. Once the scare wears off, then you really begin to fight and somehow that fight, that courage overtakes the scary part. What normal person would not be scared? You will also come to realize that everything moves slower in this world of CC. Appointments, tests, test results. You learn to be very patient. I have been scared as Teddy’s radiation ended September 5th and they still have not done the cyber knife but it was explained now that the radiation is still working. Patience. We are here for you to ask, vent, cry what ever it takes to get through, but know that there is always hope. And there are success stories too, Teddy is proof of that.
Kristin, I don’t want to be the bearer of bad news but I believe in shooting straight from the hip, so that we know what we are working with. We have dealt with the following doctors: 2 Oncology Surgeons, Director of Liver Transplants at St. Joseph Hospital in Phoenix, An Oncology Radiologist, 3 other Oncologists and all of them have said: Bile Duct Cancer or Cholangio Carcinoma will return at some point, that is the nature of the beast. Teddy was totally clear of cancer after the Whipple and it returned 3 years later. All of these doctors have also said that chemo at this point in time will not do the job. We have a new aggressive ONC and met with him Friday and he said there is a newer chemo but it only helps 1 out of 5 for a time. They all feel that radiation or cyber knife (if it can be done) do much better for this type of cancer. So, with Teddy being 76 (73 when we started) and being able to get on the way these doctors all prefer, we have opted not to have chemo, ever. Teddy has been through so much I would never subject him to something that will make him very sick and probably will not work. When we went to the Director of Liver Transplants in June (he saw us as a courtesy as Teddy does not have it in the liver but this doc has done Whipples) he said if Teddy was his father he would never give him chemo for this. Again, everyone is different but you asked why we would not do chemo. All of our doctors and most everyone I have talked with feel there is no cure for this cancer. If you are lucky like Teddy has been you still must be watched every 2 – 3months along with LAB work and a CT Scan every 6 months. This way we were able to catch the return very quickly. It is a nightmare, a monster and you learn to live with by it’s rules!!! But no one has said ever to stop fighting! I don’t mean to be negative I am trying to be realistically optimistic!
Hi Kirsten and welcome to the best little club in the world that no one wishes to join! My husband, Teddy had a Whipple 3 years ago and it was totally contained in the bile duct valve. (See my other posts). He too had clean margins etc. The surgeon, and 4 other Oncologists all advised no chemo. This CC is a monster and all we know for sure is it will return somewhere. Sure enough after 3 years Teddy’s returned is where the duodenum used to be. He had radiation (chemo generally does not always work ) and is now going for cyber knife mid December to get the rest of the little devil out! Again he is lucky to have nothing anywhere else. The only thing we all know is that one must be watched very carefully the rest of their lives. Teddy is 76. The prognosis is again a good one as he just had a PET Scan. After the Cyber Knife he will go to the ONC every 2 months and have LAB work every month. After weighing all the pros and cons we have opted for NO Chemo! Everyone is different and unique and I am sure you will get some more valuable advise here as we have many wonderful and knowledgeable people on this board! Good luck and it sounds like you are in a very good position!
OMG!!! Dr. Cashman was one of our doctors!!!! THE BEST office you could be at. When we returned from Milwaukee after the Whipple my girlfriend suggested that office as she had a liver problem and went to Koepke! We ended up with Cashman and he took care of T until he was totally healed in June (6 months later). He saw us this last June as a courtesy visit and he is the one who sent us to Dr.Kresl for cyber knife. What a small world. You just give me the date and no matter what we are doing if anything, dinner and evening will be with you!!! I can’t believe this! We think Cashman is a god. He is also good looking!!!! I have to go tell T he will be so happy to know you are with the best!!!! OMG!!!
Dear Tess, Welcome to the the best little club in the world that no one wishes to join! The only thing you can count on with CC is that it is totally different for almost everyone! Teddy has had many tubes and they are uncomfortable on a good day let alone when your body is fighting cancer. How old is your father? Teddy is now 76 and we have decided when the time comes no chemo, but that is our decision. He opted for radiation and cyber knife. We usually recommend a second opinion altho it may help to know where your dad is being treated. I know for sure you will get some good suggestions here and you will need to hang in and be really strong. Since Teddy has not had chemo I will bow to those more experienced in that field. We are here for you to chat or vent to ease your way through this nightmare journey!
YEAH!!!!! So, maybe now we can plan a date? Which liver specialist do you go to? Where do you do the PET Scan and we could make it for lunch or dinner either when you do the Scan or go to Scottsdale.
None really. Cigna just has their “rule” that the patient must have radiation first. When we first requested CK Teddy had not had the radiation. Oh, I also remember now that his tumor was 7 and the radiation did shrink it. And there can be no Mets. So, this time when Dr. Kresl requested it, request granted. Thank God as that is the ONLY thing that is going to work!
Carol, I wish had some words of wisdom having just done the fight. I know that most doctors will fight for you so perhaps a change of doctors? I also know that Cyber knife cannot be done to tumors that are too big but I don’t know what that size limit is. And the Insurance company did insist Teddy have radiation first. It did shrink the tumor to the “right” size. I would be ready to hit someone too. I just don’t understand a doctor refusing to write a letter. Maybe someone else can give you some good guidance on here. Its just all so unfair!!!! Vent and rant all you want!
You got it and just be glad you are not married to me. But I fight just as hard for my friends!! Good to see you on line!! I may be a tigress but you are also a tiger!!
Teddy is with CIGNA and they said they would not approve the CK if there were any other hot spots. So we are extremely lucky in all ways on that one. I’m thinking lets get in and get this done before they change their minds!!! But we will have to wait until mid December as the doctor said the radiation is still cookin.
P.S. You have to have a PET Scan first as there can be no other “hot” spots than the one you are requesting.
The Insurance Company denied the first request as they said Teddy needed to have Radiation first. He finished 5 weeks of radiation in September and they have now approved the cyber knife. It really is NOT experimental but originally only for brain cancer and they can’t seem to get over that fact. Sometimes your docotr has to go to battle for you to get cyber knife approved.
