March 11, 2006 at 1:46 pm #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 11, 2006 at 11:10 am #13995ukmemberMember
Is the oncologist Prof Cunningham at the Marsden? If so you have to take what he says on board, since he is one of the leading hepatobiliary oncologists in the UK.
CC is not like other cancers , say breast cancer where there is a well established protocol for treatment. They can say with a degree of confidence that although the treatment is tough and the side effects bad, nevertheless for a very large percentage of patients there will be long term remission.
My husband is starting with PDT today. He will have the PDT on Monday (injection today) and on Wednesday will have a stent inserted. A doctor from Kings told me he has a patient who is having his fourth treatment with PDT and is 4 years post diagnosis, which is a good outcome with this disease.
There are other non-medical treatments, usually based on diet and supplements. They require a significant change of lifestyle but they can have excellent results. There is also a non-medical equivalent of chemo (Ukrain). One of the participants on the Bristol Course was one it. She says there is an 82 year old woman who has been having the treatment for several years and is still alive. (I don’t know
what kind of cancer she has)
The principal of alternative therapies is to build up the natural immune system (Natural killer cells which we all have ) so that the body itself can hold the cancer at bay for longer. Problem with chemotherapy is that it also destroys the natural immunity of the body and it is self limiting.
If I were in your shoes and your dads, I think I would make some life changes and monitor the development of the cancer very closely. Assume the best and enjoy each day.
Easier said than done I know but the alternatives are not great either.
PatriciaMarch 10, 2006 at 11:20 pm #13994
your postings make me smile and cheer up a wet day! – it is very kind of you to think of my dad when you are going through this too.
My Dad met with the oncologist today. The oncologist was very negative about chemo – he told my dad that it is not effective on ‘microscopic cells’ (how do they know this when they can’t even be seen under the microscope?!) he also said that chemo for cc does not have a very good success rate, (he was referring to gemcitabine and cisplatin) and that he did not know of any trials worldwide that had evaluated the effectiveness of chemo post resection, he said that the surgeon was only able to achieve 1mm margins, he also said that chemo would ‘wipe out’ the next year for my Dad with no guarantees that it could prolong his life and that he needed to decide whether he wanted quality of life v quantity.. he also acknowledged that if the cancer did return in, say, one yrs time, my Dad could “kick himself” for not having chemo… so, alot to think about, he also gave my Dad contact details for another oncologist in London who specialises only in cc. My Dad has said that he needs time to think it all over. I have told him that it is a individual and personal decision, I hope he does go to see the other specialist in london though as he may have some more encouraging information.
Hope you are ok, JulesMarch 10, 2006 at 2:49 pm #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 8:53 pm #13992
england is wet and miserable (including the people!) – i think you have got a romantic view of the place! i spent all last summer in london in hospital with my dad, i was trying to get across london in a cab the day the bombs went off and it was a nightmare – quite surreal, yet all i could think about is that i had to get to the hospital to be with my dad.. in fact we are coming to florida in july to disneyland, can’t wait! – i hope that my dad feels up to it, i think he will – he’s putting on weight and doing really well, more like his old self every day, so miracles do happen, last year we were told that my dad would probably not see christmas..and then we got a second opinion which has just turned things around totally. (initially my dad was told that his tumor was inoperable and then subsequently as you know he had a resection) i really hope that things go well for you, i am hearing of more and more people beating this disease each day.
julesMarch 9, 2006 at 6:14 pm #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 8, 2006 at 10:23 am #13990
caroline, i hope that you get into the trial, has sorafenib given good results in the trial so far? my dad was offered to take part in a trial here – gemcitabine and cisplatin, he has also been offered to take part in another trial for bilcap (I think this is the oral tablet for of 5fu). so far he has not made his mind up what to do, it is difficult as his surgeon did not reccomend chemo and i think that my dad is reluctant as the benefits of chemo for cc are unproven, having said that i know someone who has taken gemcitabine and cisplatin which has shrunk his tumor enough so that he is soon going to be able to have a resection – it just seems so individual.
julesMarch 7, 2006 at 8:45 pm #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?
CarolineMarch 7, 2006 at 6:54 pm #13988
thanks for your reply – i think my dad did have fluid build up, he was not drained in one go, instead he had a ‘vac’ suction machine attached to the wound site which sucked out the excess fluid into a cannister that had to be changed 1-2 times per day. have you had chemo post op? my dad feels very tired still and he finds this quite debilitating, other then that he is putting weight on and his appetite is very good.
julesMarch 7, 2006 at 6:02 am #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.March 6, 2006 at 11:05 am #75
hi everyone, my dad comes back from holiday today, he is seeing an oncologist on friday, and poss starting chemo soon. (he had a resection last oct) he is feeling alot better for some sunshine, the only problem he really has now is abdominal pain and discomfort which is so bad that he is not able to sit and walk upright without being in discomfort, the only time he does not feel this is when he is lying flat..his surgeon thinks it could be due to scarring? – the wound did take a long time to heal, he had a ‘vac pack’ which sucked fluid out of the abdomen because it was just puring out, this was largely due to the fact that he had 2 ops. has anyone else had abdo discomfort like this and can advise? – thanks jules
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