just learning about CC
- This topic has 24 replies, 17 voices, and was last updated 12 years, 8 months ago by
.
-
Posts
-
Hi SweetGreen —
Our son was treated at Dana Farber by Jeffrey Meyerhardt. We felt he was a wonderful, capable, and compassionate specialist, who developed a tremendous rapport with Christopher and our family.
Sending best wishes…
Hi Jessica and Sandtdad, we are looking at making appts in Boston soon for a 2nd opinion on my husband. We have gotten the names of david ryan …gi oncologist at mass general…and abrams at dana farber. What names do you have or recommend?
Jessica,
I am currently being treated at mass general in Boston and have meetings with many of the doctors, oncologists, radio oncologists, and surgeon…
If you don’t mind me asking ….what is the referral name you were given?If I met with your referral maybe I can give some insight?
Jessica…you should have no problems with surgery at Princess Margaret, in Toronto. They see quite a few CC patients and have a great team of experts.
Hugs and love,
MarionJessica this last post of yours makes me feel much better and you now have the HOPE you were looking for. Try not to dwell on what may happen as we sure have plenty of success stories on this Board. Like we always say, we were not born with expiration dates stamped on our feet. The one I love though is that we try to remain realistically optimistic. Hang in and be strong, you are very close now to getting your game plan!
Thank you everyone, I really draw strength from reading your replys in here! We should be hearing back from a doctor in Toronto by Monday, he asked for all of my husband’s reports to be forwarded to him/her and sounds very promising. We are really hoping to have the surgery there. The doctor in Halifax said that he would do the surgery (depending on the PET scan) but he also told us there was no way it would cure my husband…. that hopefully chemo would after surgery. I have also gotten a referral to a doctor that is know for specializing in CC in Boston at the Massachusetts General. We would like to go and see him but we don’t have insurance that will cover surgery out of Canada. However if that is our only option after talking to the doctor in Toronto then we will find the money to go to Boston, there is no amount of money greater then the life of my husband. I will keep you all posted. Thanks again for your amazing support!
Hi Jessica!
I got more or less the same message from the liversurgeon I finally got to May-2010 after a month at a smaller hospital not knowing what we were dealing with. I had a huge tumor and more than ten small ones spread all over the liver.
He told me nothing colud be done and that I could skip chemo. I was 43, in very god shape and wanted treatment anyway. THANK GOD!!! I still don’t feel sick and after lots of chemo, 5 chemoembolizations my tumors have shrunk/disappeared and currently I have taken a break from treatment to see what happens.
Since diagnosis I have travelled in Europe, India and California : ), run a halfmarathon, back to work etc etc = LIFE IS NOT OVER
I’m so happy I got the book Anticancer, it has helped me a lot!! I would really recommend it!
Hugs from Sweden
MariaHi Jessica. I am a fellow Canadian at the other end – BC! It seems that Princess Margaret in Toronto have the best cc doctors.
I was saddened to read how cruel the doctor was, but maybe he didn’t realize how cruel. I think some doctors forget they are dealing with a spiritual being not just a body. Tell your husband to have hope, there is so much hope out here! I hope he is a candidate for surgery because that does offer a cure. Also, look at a liver transplant. Sounds radical but they are having success with this and he has his age on his side! The Mayo clinic site has info on this.
This diagnosis is such a hard blow but I think if your husband talks to a more upbeat, positive doctor it will help him want to fight.
My husband saw a naturopath and took supplements and other therapies to boost his immune system. I am wishing you, your husband and family all the best. Hugs. NancyJessica- I am a CC surrivor!! I will be cancer free 3 years May 24, 2012!!! I am proof surgery does work and is an option!! There are several others on this site that will also tell you surgery works. Many many people on this site have proved there doctors wrong!! I have an amazing story to share, I was diagnosed “Stage 4 inoperable” but I had a doctor with his “fighting gloves” on!! Please read my story at thetelegraph.com under christmas miracle. (I also have mine and another CC success story on my FB page Catherine Sims Dunnagan).
I strongly suggest getting another opinion. Our cancer is so rare most doctors are uneducated in it many still have outdated opinions and knowledge of it. The CC site is great place for guidance, kinship and information. My miracle was at Barnes-Jewish Hospital in St. Louis MO. by Dr. William Chapman.
I am proof there is HOPE!
Lots of prayers-CathyJessica,
I concur with everyone above to get the second opinion. That’s your best bet. I kind of feel old after all of these younger people posting, but heck, I’m only 40, well, 41 in April, but still only 40 for another couple of months!I did not have the official CC diagnosis until after my surgery and the pathology came back from the bile duct that they removed. I just knew that I had to have surgery of some sort or the other to get rid of the blockage that was causing my elevated liver enzymes and high billiruben. I am lucky in that everything was removed and nothing metastasized to any other organs or lymph nodes either.
I’m still doing the chemo, 3rd dose this Friday. I wish you the best of luck from here on out, and try to think positively! I know it may be hard, but I’ve always been an optimist and try to look on the positive side.
Jessica-
I’m so sorry. I don’t have much advice, as we are still new to this. My best advice to you is get to a major cancer center. I seen where people posted the names of some doctors, please call them!
I’m the one with CC in our family. We are young too, with small children. Let me tell you girl- the kids keep me going! I had 6 hours of chemo yesterday only to come home and gives baths.
Sending your family my love.
Hi Jessica,
Welcome to our family. I have a daughter named Lauren that is 25 and has CC. It is such a terrible blow to be dealt bad news. Your husband is in shock right now and doesn’t know how to deal with all of this. We know the feeling. Lauren’s doctor told her she would not live more than 5 years. But darn it, we are gonna try everything to prove him wrong. Lauren has one huge tumor that started out the size of a canteloupe. It has shrunk in 3 months to the size of a grapefruit. She has 5 smaller tumors on the other side of her liver and most have shrunk to barely visible. The largest is under 2 cm. Chemo seems to be helping her. You have to keep the faith and never, never give up hope. Your husband is young and strong like Lauren. He needs to give it the good fight. Lauren always says she has too much she still wants to do and can’t die yet. Your husband needs to fight for you and your young children. I’m sure he will come around once a game plan is in order and you find a more positive doctor. I think some of these doctors act that way because they deal with cancer every day and they have to distance themselves and remain cold or they would crumble. It is a shame to the poor patient that wants to hear something positive. I am here for you Jessica. I find this discussion board to be very helpful. I can say what I want and do not feel judged. I think it will help you too. Take care and I will be praying for your family.
Love,
-PamJessica….these are physicians have a vast amount of knowlege in re: to CC. All are at Princess Margaret, Toronto.
http://www.uhn.ca/Clinics_&_Services/clinics/general_surgery/staff/cleary.aspDr. Jennifer Knox
Address:
Department of Medical Oncology
Princess Margaret Hospital
610 University Avenue 5-210
Toronto
Ontario
M5G 2M9Phone: (416) 946-2399
Fax: (416) 946-6546and Dr. Laura Dawson, MD FRCPC
Associate professor,
Dept. of Radiation Oncology,
Princess Margaret Hospital
University of Toronto
Toronto, Ontario
phone 416-946-2125
fax 416-946-6566
Hugs and love,
MarionJessica,
I think that depression is a common and expected part of a diagnosis of CC. Seems like everyone has to have a period of adjustment. But for me, after that initial period of shock and depression, I picked myself up and put on my fighting gloves and took control of the things I could. Sounds like you are there, but your husband is not. That is ok too, he will probably get there when there is a plan in place. You sound like a wonderful supportive wife and he is lucky to have you.
Hang in there!
-Randi-
- The forum ‘Introductions!’ is closed to new topics and replies.