Forum Replies Created
March 23, 2006 at 4:30 pm in reply to: Mum – 74 yrs old given 6 months last July 05 #13901
Just a note to say that I’m thinking about you and your Mum.
Caretakers, such as yourself, have to have care as well, so be sure to do good things for yourself.
-CarolineMarch 23, 2006 at 4:25 pm in reply to: We will miss you Sweetheart #14040
I am heart-broken to hear about your wife.
I don’t know of any charities or research organizations, but this is a good question. I would check with the American Cancer Society or the people at the Sorafenib trial – Southwest Oncology Group to see if they can use any assistance. I have thought about asking people to donate to the American Cancer Society when my time comes, because we have used them to get free lodging for traveling to doctors, as we are in a remote area.
Again, I am so sorry,
Caroline StouferMarch 23, 2006 at 4:15 pm in reply to: Chemotherapy post-resection #14013
I was resected on November 30, 2005. Initially, my surgeon and oncologist both told me I’d have chemo after the surgery; however, when I saw my oncologist for my first post-surgery check-up, he recommended against it. This enabled me to go on a working vacation with my husband to Tucson, Arizona which was wonderful for me both mentally and physically.
I think that my oncologist advised against chemo because the statistics don’t show that it is that effective, and I think he wanted to steer me toward a clinical trial, which I wouldn’t be able to participate in if I’d had chemo.
Unfortunately, at my scan three months after surgery, I do have three or four little “hairballs” back in my liver. We were all shocked because I felt great, looked great, and these little boogers weren’t even detectable before or during surgery.
I did get in the clinical trial and just started on Sorafenib two days ago. It works very well in renal cancer. Hans, a member of this site was also on it for 8 weeks, but his tumors were still growing and he has gone onto chemo. It is an oral medication, and so far, I’m not having any side effects, but it’s only been two days.
My oncologist feels that my tumors are small enough at this point, that there’s time to try this drug. I can go to chemo later on as a back-up plan.
Like you, I feel fortunate that I was able to have my liver resected.
If you think that you may want to participate in a clinical trial, then you may not want to have chemo right away.
Good luck to you,
Caroline StouferMarch 11, 2006 at 2:44 pm in reply to: Mum – 74 yrs old given 6 months last July 05 #13897
You go, girl!
Both of my parents have passed away. When my father died, I went through a major mid-life crisis. I ultimately left my husband in an amicable divorce after examining what I really wanted in life. My mid-life crisis was one of the best things that ever happened to me! My ex and I are both remarried to people to whom we are much better suited. My ex seemed to have more respect for me after I left him than when we were married. He said he admired my strength to address our issues and get on with life, and I think he was relieved that I spoke (and he didn’t have to be the one to do so.)
My mother died in 2000 after a long decline in health, and she went in a peaceful fashion. Again, I re-evaluated my life and left my job as City Treasurer here which was quite stressful. It was a great experience, but I have no regrets for leaving. I took another job in government accouting which was way worse, but then an opportunity to buy the local bookstore fell out of heaven into our laps, and it all worked out. You don’t get rich selling books, but it is a lot more fun than governmental accounting.
So I think it’s great that you are spending more time with your mother and considering your options. I hope your mother is doing as well as can be expected. I suspect you’ll come to really cherish this time you are spending with her.
I’m so sorry we all have to go through this, but communicating on this website is a great help to me, so thank you for listening.
My thoughts are with you and your Mum,
-CarolineMarch 11, 2006 at 2:15 pm in reply to: Photodynamic Therapy #13691
Thinking of you and your husband today and all this next week. I will be most anxious to hear about PDT, as your postings are the first I have ever heard of this. Wishing and praying for the very best of outcomes.
Your post to Jules had some good info and gives me hope.
–March 11, 2006 at 1:46 pm in reply to: post op abdominal discomfort #13996
Dear Jules & Patricia-
My oncologist is not that keen on chemo, either. My surgeon, as well, told me that the response rate is only 35% at most, but then again, someone has to be in that 35%. As chemo is my back-up plan, I’m anxious to hear other’s experiences, but I’m not that crazy about going through it. Jules, I think your father really needs to see that cc specialist in London, because he may know much more than just a general oncologist. He may be more familiar with the subtleties of the various chemo drugs and using them in combination.
By the way, I had a couple of English ladies in my bookstore yesterday who said good things about Marsden. Also, I have a friend visiting from Denver whose friend Martha loved her oncologist and was very disappointed when he left the Denver area to come to the western slope of Colorado, my side of the state. Turns out I have her friend’s oncologist.
Patricia, have you heard anything about glutathione? I was supposed to start on it, but postponed it when I applied for the clinical trial for sorafenib. (I haven’t received final approval, but I was told this week that I have been accepted. And I got great news yesterday that my insurance company will pay for tests associated with being in the clinical trial.) I also take other supplements and was on large doses of vitamin C, but my oncologist said the vitamin C may actually promote tumor growth in that it removes the waste of tumors and makes them grow more quickly. Have you heard anything about that? I’m going to ask the clinical trial people if it’s okay if I do the glutathione while on the sorafenib. Glutathione is supposed to very beneficial for the liver.
As for me, I’m feeling good and have lots to engage me, although I do get tired in the evening. Very busy weekend. Another set of friends coming in today to cross-country ski. It’s been snowing cupcakes so they will have great conditions. I have to work mornings in the bookstore and have my oldies radio show tomorrow afternoon. I’ll think of you when I play some British invasion music. We are hosting a couples book club Sunday night, so I must clean my house. I have been practicing the flute and pennywhistle to perform some Celtic music next weekend for St. Patrick’s Day. Our band is not so good, but up here in our little hamlet in the mountains, no one is that particular. They just want an excuse to drink green beer, eat corned beef and cabbage, sing some drinking songs, and do a jig. But the big thing coming up for me is that we’ll be driving to Dodge City, Kansas next week so I can start on the sorafenib. Keep your fingers that the drug works for me.
CarolineMarch 10, 2006 at 2:49 pm in reply to: post op abdominal discomfort #13993
Everyone I’ve ever met from the British Isles, with maybe one exception, was delightful. (And if you can’t be a romantic when you have CC, when can you be?) While I do live in one of the prettiest places in the world (the San Juan Mountains of Colorado), it is very dry – which is to my liking after growing up in the hot, humid south. But an occasional visit to a “wet” place is a vacation for us.
Your story of trying to get across London during the bombings – how frightening! The closest I’ve ever come to anything like that would be growing up in Dallas when Kennedy was assasinated.
Like your father, my husband & I had a nice vacation when I recovered from surgery, and I think it helped my mental and physical state very much. We were on a working vacation in Tucson, Arizona a month ago which was very relaxing for me. I’m looking forward to another vacation as soon as we can fit one in. I understand the desire to go to Disneyland. I keep trying to get my husband to Elitch Gardens when we’re in Denver, but he doesn’t like the scary rides. I may have to find a more adventurous soul to ride the roller coasters with me.
Please let us know how your father’s visit goes today with his oncologist. Tell your father he is in my thoughts daily.
Nice chatting with you,
CarolineMarch 9, 2006 at 6:37 pm in reply to: Mum – 74 yrs old given 6 months last July 05 #13895
I am glad to hear that you took some time off to spend with your mother. I have cc and I don’t know how long I have. I had my liver resected last November, and already the suckers are growing back. My next step is to get into a clinical trial for sorafenib and should find out next week if I will be accepted.
I actually have two friends coming to town this weekend to see me. One of them would probably be coming anyway as she is coming to cross-country ski. But another one is coming out of her way, and I know it’s because we both realize that I may not have that much time left. It is a little upsetting to admit this, but I have to be realistic about what may lie ahead. So, I am contacting lots of friends and relatives so I can get some last visits in while I’m in good health. I’m sure your mother will want to spend as much time as she can with you. I don’t want any of my loved ones to jeopardize their work situation, finances, or health for me (my sisters each have offered to donate part of their livers to me), but I’m sure it is invaluable to your mum to see you as much as she can.
Long before cancer became an issue for me, I had two older friends that lived in the Dallas area that had cancer, so I flew down to see each of them over a weekend. I had just started a new job with a strict boss and had no time off, and as luck would have it, my flight got cancelled out of Dallas. I had to miss a day of work, but I stayed late several nights and made it up and my boss got over it. She later left and asked me to apply for her job, so apparently, it didn’t affect her opinion of me in the long run. As both of my friends died within the year, I was so glad I made the trip to see them. Each one was almost like a second parent to me.
Very best of luck to you and your Mum. Seeing you will do her good I’m sure. I don’t have my own children, but each time I see my sisters or stepson, it feels so good.
-CarolineMarch 9, 2006 at 6:14 pm in reply to: post op abdominal discomfort #13991
Met with my oncologist yesterday. Blood work is looking good, so I think that I should get accepted into the trial which is in Phase II. While we don’t know what the drug has done in Phase I for cc, it has already been approved and is being used in treatment for renal (kidney) cancer with great results – 78% have arrested growth of tumors, 2% have had shrinkage. However, Hans who is a member of this site tried it for 8 weeks. Had some trouble with it elevating his liver enzymes, so he went to a reduced dosage. His tumors were still growing, so he went off it after 8 weeks and is on chemo.
We’re looking into other clinical trials as a back-up plan as my oncologist wants to leave chemo for later. Wouldn’t mind coming to England to be in one! I hope to get over there some day, anyway. Besides London and so many other places I’ve read about, I would have to go to Liverpool to see some of the “Beatles” sites. I suppose this is a very American thing. I have an oldies radio show on our very small, local radio station, and of course, the Beatles figure very prominently. I’ve also told my friends that I’m not afraid to die because when I go to heaven I’m going to date George Harrison. (If he’s there and not been reincarnated or gone on to some other spiritual plane.) Of course, I’d break up with George when my husband got there. Ha-ha!
Hope your father’s appointment goes well with his oncologist tomorrow, and I’m glad he got a nice vacation.
-CarolineMarch 7, 2006 at 9:19 pm in reply to: Experiences with Sorafenib? #13760
Thank you for your reply. Good luck with your other treatment. I’ll be anxious to hear how it goes as I may be doing that if the sorafenib doesn’t work.
-CarolineMarch 7, 2006 at 8:45 pm in reply to: post op abdominal discomfort #13989
I have not had chemo. I think my oncologist didn’t suggest it for two reasons. One is that he didn’t think the response rate was that good. Two is that I think he wanted me to be able to get into a clinical trial and if you have chemo, you can’t always do the trials. My appetite hasn’t been what it used to be, but that’s okay because I was rather pudgy before all this started. I’m now at a good weight for my age and height, but I hope not to lose much more.
I go for a blood test tomorrow and if my liver enzymes are good, then there’s a good chance I’ll get in the trial for sorafenib. I have to drive about nine hours to Dodge City, Kansas to get to the nearest site. I’m scheduled for my first appointment on 3/16/06 for the clinical trial.
Keep your fingers crossed that I get in the trial and that the medication works. We’re thinking of chemo as a back-up plan if I don’t get into the trial.
I hope your father gets good news tomorrow. I’ve seen on the website, clinicaltrials.gov, that there is a clinical trial in England for cholangiocarcinoma – have you considered it?
I have spoken to a nutritionist and an integrative medicine physician. They both recommended eating organic. It’s more critical that certain things be organic than others. On this website, there’s a list of the fruits & veggies you should try to eat organic and a list of those that it’s not as big of deal.
The nutritionist recommended a lot of sensible things – limit sugars (which I’ve heard feed cancer), eat fiber, eat lots of fruits & vegetables, try to eat the whole fruit, not drink the juice. The more you can eat fruits and veggies in the raw state, the better. Flax seeds are good for you which you can grind up and sprinkle on cereal or other foods. (I look for frozen waffles with flax seeds at the health food store.) The darker the fruit/veg the better – such as the darkest blue blueberries, the reddest raspberries, yams, deep green lettuces, red bell peppers. Avoid red meat and try to eat organic meat.
My nutritionist told me about a website that I will look up and put on here.
The integrative medicine doctor said to limit dairy and to avoid most soy products unless organic. She said so much soy grown in America is done so with tons of pesticides. She also said berries are the best, and buy organic. Sometimes I buy them frozen. Further, she said to limit fats and eliminate altogether trans fats which now have to be listed on the nutritional food labels.March 7, 2006 at 6:36 am in reply to: Insurance problems #13955
I am hoping to enter a clinical trial and my doctor is writing a letter to the insurance company as the clinical trial doesn’t pay for all the tests and exams associated with the trial. If you can get your doctor to write a letter that may help.
I had a friend with some unusual medical problems and she had seen every possible specialist in Colorado and they concluded she needed to go to Mayo Clinic. The insurance company tried to say she could get the care in Colorado, but her primary physician intervened and she was able to go. Turns out she has some unusual allergies.
My insurance company tried to deny my last PET scan and I called and talked personally to the man who made the decision. I told him that I wasn’t trying to harass him, I only wanted to understand the rules about PET scans so I could manage my health care. My oncologist had gotten rather irked with this guy and I think yelled at him on the phone. The insurance company actually came back and said they would pay for it as they found a loop hole in the system.
Do you have a state insurance board that you can call?
It is criminal to be held hostage by the insurance companies when time is of the essence.
If you have to pay for the treatment yourself, you may want to talk to the hospital about how to set up a financing plan. Have you checked with the American Cancer Society about any possible help or suggestions they might have?March 7, 2006 at 6:17 am in reply to: Experiences with Sorafenib? #13758
I am new to this website. I am hoping to start the sorafenib trial on March 16th. I have to travel to Dodge City, Kansas which is about nine hours from where I live which is Ouray, Colorado in the southwest part of the state.
I had my liver resected on November 30th. They found cancer in one of nine lymph nodes sampled, so the doctors told me it could come back. At my last set of scans, I had 3 or 4 new little tumors in my liver. My oncologist didn’t put me on chemo after surgery. I think he knew the cancer could come back quickly and wanted me to be able to get into a clinical trial.
Are you back on the medication and how is it going? I’ll let you know more after I get started.
-Caroline StouferMarch 7, 2006 at 6:02 am in reply to: post op abdominal discomfort #13987
This is Caroline Stoufer from Ouray, Colorado. I had my liver resected on November 30, 2005. I’m feeling pretty good these days, but it hurts to yawn or sneeze. I feel like I was sewn up pretty tight. I have some other minor pains in my abdomen which could be the inner incision or the tumors that have grown back or it could be Mexican food. I did have a fluid build-up after surgery and got drained about 3 weeks after the operation at the hosptial. They took two liters out of me – I was shocked! I felt so much better after that.
Could your father have more fluid build up? Good thing he’s seeing his oncologist this Friday.