bill
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Dr. David Nagorney at Mayo Clinic in MN performed a second resection on my wife 2 years after her initial surgery. He is a highly regarded liver surgeon and I would recommend him (not “warm and fuzzy” but very competent).
Bill
Sonja,
Your husband is young, in otherwise good health and you are going to visit Mayo Clinic to find what options are available. That description fits my wife (who was diagnosed at age 39) and she is still doing well more than five years later. There is reason for hope despite all the statistics and history of this disease.
Good luck to you and your husband.
Bill
My wife, Kathleen, began taking Sorafenib about six weeks ago. She is taking half the dose (because of side effects she had with Tarceva) and is tolerating it well. She was seen at Mayo (MN) last week and her largest lung tumor was actually smaller (15mm to 13mm) since last measured in July. Her liver tumors are stable. I don’t know how much of that can be attributed to Sorafenib but her doctor did not rule it out since she has had no other treatment since Therasphere in February.
I’m not sure what the disappointing results are that Stacie referred to because I recall a lot of positive news about sorafenib’s impact on liver cancer this summer. Of course the good news was that it increased average survival time by something like four or five months but from small things big things come.
Good luck.
Bill
P.S. You specifically referred to Mayo-MN. Kathleen’s doctor there is Lewis Roberts and I would highly recommend him. Her Mpls phyician also recommended sorafenib. Insurance covered it and the drug manufacturer has been great to work with.
“As children we all believe our parents are invicibile- they are the strong ones, and now im finding myself having to be the strong one for her, which i know i can be but all i really want to do is crawl up on her lap and hug her like i did when i was a kid. god- i hate this…”
Lovemom,Those are very heartfelt and meaningful words. I always wonder what is going on with my kids when they deal with their mom’s illness and you probably hit the nail right on the head.
My wife had great success with Therasphere and I am a big advocate of getting multiple opinions and finding a doctor you can work with. Good luck to you, your mom and your entire family.
Bill
My wife was diagnosed with CC at age 39, her brother died of kidney cancer at age 36, and her sister had brain cancer in her early 40s. My wife was genetically tested at Mayo Clinic and they found no reason to tie these diagnoses together or with any prior family history. Hard to believe.
THERE IS HOPE. You are young, which is in your favor and you have access to excellent medical care In Seattle. My wife, Kathleen, was diagnosed at age 39 and just had her 45th birthday party on Monday. She has had two surgeries, chemotherapy, therasphere and who knows what else. In all honestly, most of the past 5 years have been very good for Kathleen despite her diagnosis.
I also like the second opinion ideas people have suggested. We are so lucky to have a local physician we trust and like.
Good luck!
My wife and I both went to a counselor several times and found it very helpful. My wife started on anti-depressants and that has helped also. Is this something your father can talk with his physician about? My wife’s doctor was very attuned to this and strongly supported her mental health treatments.
Good luck.
We live in Minnesota and my wife has been well taken care of at Mayo Clinic. HOWEVER, her key relationship is with her local oncologist and Mayo provides the technical expertise when required. Like a couple others have suggested, I would get as educated on the range of options as possible and then get another opinion (closer to home) from a physician you feel confident in. No two patients are the same nor is there one treatment that fits every case so try to use this site and others to learn as much as you can before your next appointment.
Best of luck to all of you.
Carol,
http://www.y90support.org/News.html
Check out this broadcast about fighting for coverage for Therasphere. We did not have any problem getting in covered by Kathleen’s heatlh plan but not everyone is a candidate for the treatment. In fact, this was not even discussed with Kathleen until it was discovered that she had a mixed CC/HCC tumor so I don’t know if this is available for CC patients.
Best of luck and I hope you are provided with some good options to pursue.
Bill
I really like the 2nd opinion idea. From my experience with my wife, Kathleen, there is no one “right” way of treating this. She has had varying levels of success with a variety of treatments over the past 5 years so I encourage you to keep exploring your options. (The transplant rejections are tough because it seems like the only long-term “cure” but I have come to understand the reasons after several rejections for Kathleen).
Good luck to all of you.
Rae,
My wife, Kathleen, was also seen at Mayo Clinic by Dr. Nagorney and he performed a second resection of her liver 3 years ago. The cancer came back again and she has been through chemo and other treatments since then. She is scheduled to begin another round of chemo (sorafenib) any day but she is dreading it. Since Kathleen was diagnosed 5 years ago, I think is is safe to say that the chemo periods have been the toughest on her. She has been very courageous during this struggle and if she ever said “no more chemo” that would be a brave decision also.
My only question after reading your initial post was whether your father had seen any other oncologists about this. My wife has had excellent care at Mayo and we like their technical expertise. But her primary relationship is with an oncologist in Mpls that not only provides a second opinion but is also a very compassionate human being. Another physician’s opinion may or may not be of value to your father.
The other thing Kathleen has done is see a cancer counselor a few times a year. This is someone who sees a lot of cancer patients and has many helpful comments and suggestions based on what she has seen with her other patients. It’s often more difficult to get us guys to go for something like this but your father and/or family may get some benefit. Kathleen and I sure did.
It appears to me your father and your family are really taking control of this rather than letting it control you. I wish the best for you, your father and your family.
Bill
I have been catching up on this site after being away for a while. Your situation sounds a lot like my wife, Kathleen’s. She was diagnosed when she was young (40), had two resections at Mayo Clinic, has been on a number of chemo regimens and most recently had Therasphere treatment. She is going to start a new chemo drug, sorafenib, in the next few days and is not looking foward to it. One thing that has changed for her in the past year is the addition of hepatocellular cancer along with cholangiocarcinoma. A mixed-type tumor which makes an unusual situation even more rare.
Kathleen recently made it past the 5 year anniversary of her cancer diagnosis. She has been a success story and I can honestly say that most of the past 5 years she has been able to lead a fairly “normal” life. One thing that upset her was having to quit her job (where she worked 20 years) but we’re happy to have her around more as a mom and wife.
Just like cancer affects everyone differently physically I believe people handle it uniquely also. We both read Lance Armstrong’s book and we really liked a book called Dancing in Limbo. Kathleen and I have seen a counselor together a few times who we really like and helps us with some of the rough times. The fact she has many cancer patients is really valuable.
Another thing Kathleen has going for her is a GREAT relationship with her Mpls physician. That is so important and in fact she switched doctors at Mayo Clinic because she wanted a different type of doctor-patient relationship.
Sorry for rambling on here but so many of your experiences and comments remind me of Kathleen. There is hope and every patient and situation is unique so don’t focus too much on the numbers. I know that’s easier said than done and Kathleen still asks about it at every appointment.
I hope this helps and I know Kathleen wanted to find people in her situation when she was diagnosed 5 years ago. She has a link to a carepages.com web-site under the “wiki” button above. Her patient name is “kathleenmfoley”.
Good luck!
Anna,
That’s excellent news and very encouraging. Continued good luck!
My wife had severe itching and rash with Tarceva a year ago and had to discontinue using it. She will be starting sorafenib next week and is concerned about the same thing happening. How bad is your father’s itching and skin irritation?
Bill
