Are you as tired as I am ?
- This topic has 11 replies, 11 voices, and was last updated 13 years, 9 months ago by
.
-
Posts
-
Hi Pljc!
My Mom was treated at Duke. Her oncologist was Dr. Michael Morse and I was very pleased with her treatment.
I believe you will be in very good hands there!
Hugs!
PamHello: I was just recently diagnosed with intrahepatic CC. I am 75, male and was in excellent health until about two months ago. I have had two shots of chemo – gem and cisplatin and seem to be tolerating it well. I wonder if there is anyone out there with a similiar background. i am being treated in a world class Boston hospital but not one that specializes in cancer. Am also considering moving to New York City to be near two of my kids and to switch to Sloan Kettering. Have not received a second opinion but was told that there is no doubt about the diagnosis and have been told that the treatment is the right one. My tumor is stage 3A and large, about 8 x 12 cm. Any thoughts on my prognosis? My oncologist told me the median is 9 months.
Dear PLJC:
Mmmm, I think I have some good news for you. Even though you have been treated poorly, the fact that your tumor was resectable was the rare best opportunity that most people don’t get. Secondly, it looked like they got it all. The chemo combination you were given is one of the best studied for any kind of help with this cancer. I know, I read the large study that just was released last Spring. Most studies are only a handful of people. this one was about 400 people. As I understand it, the gemzar is in large amount, the cisplatin small. They both help each other be more effective while at the same time, lesson the bad side effects of each other. I know because I had an amazing surgeon, caring oncologist, and am looking as if I’ve been cancer free since the surgery, taking the chemo as a preventative (adjuvant therapy). I did amazingly well with the chemo. MD Anderson also agreed with my oncologist on the best treatment. The radiolotist said it was too dangerous for me. I had a tumor that was about 55% of my liver (they earlier thought it was 60% or more and had to think twice about giving me the surgery).
Now, you just need to insist on a caring oncologist hopefully taught in a good school and internship. (Mine had internships and were doctors in Chicago’s finest hospitals.) If they aren’t caring, then for me, they are depressing and frightening. I experienced that before with my late husband’s doctors.
Best of luck to you. I don’t think I’ve visited this board since late last year when I found out what I had. I’m doing great, holding my breath, and I hope you are too. Just kick those uncaring doctors to the curb.
Dear PLJC:
Welcome aboard to the cc club! So sorry you had to learn so much the very hard way about second opinions from true bile buct cancer specialists, but you’ve survived that!
The second opinion from the hepato-biliary liver specialist surgeon at an NCI-affiliated cancer center saved me from unnecessary surgery, and started me on a course of chemotherapy and radiation which have improved my functionality and have me feeling good, at present. The Naturopathic Cancer Specialist at the Life Extension Foundation has guided my choice of nutritional supplements to take and avoid during chemo and radiation, and they have a pre-and post surgical protocol for you to follow if you are so inclined.
I am so thankful for the informed loving guidance and support from the members and posters to this board, all of whom are blessings to all us cancer-fighters. I know that you will be, too.
God bless you ALL!
-Tom
Hi Pljc,
What a story and trial you have been through. It is wonderful that you have found your way to this Board. I welcome your experience and knowledge that you can share with us as well as I hope you gain lots of information and support from us too.
One question I have for you…..I’ve been searching for a new doctor after mine became the way some of yours were….just didn’t want to do anything more and had no “plan”. How did you find your doctor at Duke? I didn’t see where you were from and didn’t know if Duke was out of your area. My medical group is refusing to give a referral (I have an HMO) outside of a 30-mile area. Since I live in the Chicago area I thought it would be easy to locate a dr. that “specialized” in CC, but haven’t been very successful on the internet.
Good luck to you in your plan. Stop back soon to share your future success!
Linda Z.
PLJC, just wanted to add comments from the others who posted. Welcome to the site, and agree with Lainy that “knowledge is power”. I’m glad you made the decision to seek out another doctor, one who is more caring, more knowledgeable, and that you do have a care plan now!
Congratulations on your surgery. My surgery sounded some similar to yours. In May 2004, I had (1) 4.5-to-5.0 cm tumor removed with a liver resection. Also gallbladder was removed, and several lymph nodes. My margins, too, were very close, and I had follow-up chemo & radiation.
Congratulations on being a survivor! There are several longer-term survivors on this discussion board too. I am now going on 6+ years. I wish you continued success in your journey. Please keep us posted on your progress.
Dale
You’re not a lone in this fight, A lot of people out their do fight against this such disease. Some people who suffer cancer wanted to give up the fight, but they realized that there’s nothing wrong trying to combat it. There’s no assurance that you will survive from this disease, though other have got through it, but there’s still chance to cure it through chemo and other medications, also along with this is prayer, which is the most effective tool. Meanwhile, my suggestion to all the patients is to pend their time with their family, treasure every second that goes by while they’re still living.
pljc…..I would like to follow Lainy and Gavin and welcome you to our site. I am happy to hear that following the more then unpleasant introduction to this cancer you now are in good hands and feel comfortable with your choice of switching physicians. I congratulate you on your choice. I wish for the upcoming CT scans and labs to confirm the success of your resection and prove for you to be cancer free. Good luck and please stay in touch.
Best wishes,
MarionHi pljc,
Welcome to the site, although I am sorry that you had to join us all. That is quite some shocking story that you have there about doctors who don’t know and who don’t seem to care either, terrible. I am glad to hear that you now have new doctors and a new plan in place and hopefully this will work out much better than your experiences with the last lot.
Lainy is so right about knowledge being power and the more you have the better informed you are. I came here back in 2008 when my dad was diagnosed and it was the best thing that I could have done. I do hope that you will come back here as you will get a ton of support and help from us all. And please feel free to ask as many questions as you have, someone will be able to help. I am glad that you have joined us all here now and I hope that your apps at Duke this week go well.
Best wishes,
Gavin
Dear PLJC, first of all welcome to our family and sorry you had to find us and wish you had a few years ago. Also first of all, you are already a survivor! Congratulations on getting another opinion and receiving the knowledgable plan that puts you on the right road. How I wish your letter could be somewhere that “new” patients would see first.
The most important question to a doctor in the case of CC is “how many CC patients have you treated”? Also for newbies, knowledge is power and we need to have power to be our own/best advocates.
We are so happy for you now that you have a game plan and please keep us posted on your progress.Just wanted to introduce myself to everyone. I was followed for 10 months after a routine colonoscopy lead to a CT scan that showed lesions on my liver. Two CT scans, two MRIs, a tagged red cell study, AFP tumor marker, numerous office visits,,,,months of reassurance that it was not cancer. I had no symptoms. Liver function was normal, no pain, no jaundice. The Dec 2008 CT showed no change, still a 2 cm tumor. The Doc decided to push the next CT out 5 months to May 2009. The May 2009 CT showed a 5x4x4 cm tumor. A biopsy was scheduled 6/04/09 and I rec’d the results, Intrahepatic Cholangiocarcinoma, 4 days later. Ten days later on 6/18/09 I had resection surgery. They removed the left lobe of my liver that contained the 5 cm tumor, my gallbladder, and 5 lymph nodes, negative but exceedingly close to the resection line. After two Radiologists told me that they would not treat me, my Medical Oncol agreed to chemo. I started Cisplatin/Gemcitabine on 08/03/09 and lasted for 8 months until my body said ‘no more’ in April of 2010. Landed in the hospital for 7 days during chemo with a temp of 104.8. Never found a cause for the infection. I feel that I have rec’d mediocre at best care from my local doctors. I rarely saw the doctor and was usually with a nurse practitioner on chemo visits. She never could get my cancer straight even though it was right in front of her. It became a joke,, ‘now lets see, you have gallbladder cancer, right?’ or pancreatic, or colon, etc. My oncologist resigned from my center. The last time that I saw him I made the mistake of asking him to remind me of the recurrence rate for Cholangio. His reply was ‘ You are asking me to recall something that I researched a long time ago when I first met you when you could just as easily go through my dictation and find the answer for yourself’. He walked out of the room and I never saw him again. I had my 1st major anxiety attack soon after that. I was assigned a new doc. She introduced herself and then said that there was no care plan for this cancer. She told me that I was way behind in CT scans(I told her I had scheduled the last two myself). She said that I should be scanned every 3 months and that I did not need the 3 phase liver using the 64 slice machine at the hospital. My scans could be done at the cancer center swallowing the glow in the dark and on the slower scanners. My surgeon didn’t agree with this and sent her a note. The next thing I know I have a new doc. I met with him 3 months later. He walked in, introduced himself, and said ‘I’m sure you are already aware that there is no care plan for this cancer, but we really need to keep a close eye on you’. He then proceeded to push my next scan out to 4 months. That’s when I decided I was tired. Tired of being told that there is no care plan. Tired of doctors taking me on as their patient but obviously not doing any homework on my cancer. Tired of doctors that are so sure of themselves that they take a chance with my life just to prove that they are right. And when a biopsy proves them wrong, they don’t even apologize. I have new Doctors now. I had appts with both of them this week at Duke. Please, please, please, if you are new to this cancer, do your homework and find a doctor that specializes in this cancer. I wonder how different my treatment would have been. Remember the 2 Radiologists that would not treat me? The Radiologist at Duke said that he would have used a beam along all of my resection lines prior to chemo. Now I’ll always wonder if that would have helped! Happy to report that I do have a care plan now…will be at Duke every 3 months for labs, CT and results for the first two years.
- The forum ‘Introductions!’ is closed to new topics and replies.