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Medical Forum / Diseases and Disorders / Cancer / April 2004Stage IV Liver Cancer
Hello - My best friend's father was just diagnosed with Stage IV liver cancer. They do not have internet access, and asked me to seek advice online on their behalf. He just started chemotherapy this week. If anyone can share a successful treatment story, or reccomend doctors who specialize in this type of cancer, I will pass along the information. They live in the Atlantic City, NJ area, and are considering seeking more treatment in New York, Philadelphia or Maryland (Johns Hopkins). Thank you. Someday in the distant future, archeologists digging thru the ruins of alt.support.cancer will discover that pitdiver@aol.com (Pitdiver) had this to say on 09 Apr 2004: > Hello - > [quoted text clipped - 6 lines] > more treatment in New York, Philadelphia or Maryland (Johns Hopkins). > Thank you. Find out what facility in the area is recommended by NIH. These guys are supposedly among the best, and in your area: http://www.mskfirst.org/general/default.asp (Note they have two NJ facilities, in Denville and Dover) Good overview of options here: http://www.cancer.gov/cancerinfo/pdq/treatment/adult-primary-liver/patient/  Signatureofficially recognized SPEWS puppet ISO certification and everything I AM SPEWS (SLAPP PREVENTION ELECTRONIC WHITENOISE SYSTEM) > Find out what facility in the area is recommended by NIH. These guys are > supposedly among the best, and in your area: > http://www.mskfirst.org/general/default.asp Socks, I don't want to upset you or the newsgroup, but they lied right there on their first page. "Where you're first treated can make all the difference"....Sales pitch. As far as I can see, under the liver section, they don't even discuss the various stages of liver cancer nor options nor palliative care. In fact, under treatment, they don't even mention "chemo". Weird web page or weird hospital, I'm Canadian so hopefully they can't sue me... just my opinion. J Someday in the distant future, archeologists digging thru the ruins of alt.support.cancer will discover that J <abacus@invalid.anon> had this to say on 10 Apr 2004: >> Find out what facility in the area is recommended by NIH. These guys >> are supposedly among the best, and in your area: [quoted text clipped - 10 lines] > just my opinion. > J huh. good catch. Maybe it was superior marketing, but when I lived in NYC they were viewed as top of the line. I'll stand by my recommendation to check for an NIH referral though. I got one in Denver and came away happy. Signatureofficially recognized SPEWS puppet ISO certification and everything I AM SPEWS (SLAPP PREVENTION ELECTRONIC WHITENOISE SYSTEM) > Someday in the distant future, archeologists digging thru the ruins of > alt.support.cancer will discover that J <abacus@invalid.anon> had this [quoted text clipped - 10 lines] > I'll stand by my recommendation to check for an NIH referral though. I > got one in Denver and came away happy. Well to continue this exchange, Jerry's in the US and he put the NCI in the FAQ http://www.cancersupporters.com/asc/part1.html section - "How can I choose the right cancer doctor? " I particularly like (except in complicated cases such as some of our thyroid posters) or specifically complicated surgeries, the part "Choose honesty over sensitivity. Pick a doctor who's going to be upfront and honest with you, not one who has a hard time delivering bad news or isn't willing to discuss the inevitable uncertainties around treatment outcomes. You need to be told the truth regardless of how difficult it is to bear and may appreciate this in the end. Choose an educator over a decision-maker. Choose a doctor who educates you about your disease and treatment options and guides you in understanding these options. You must be able to fully utilize your doctor as an information source but remain autonomous and an active participant in your care and the ultimate decision-maker. You want your doctor to give you opinions, information, and data but you don't want him/her to make all the decisions for you. Go with who feels right. Pick a doctor you trust and with whom you are comfortable. Don't be afraid to choose a different doctor if you don't feel comfortable, even if you've already started treatment. When you have cancer, your relationship with your doctor is one of the most important relationships in your life. Remember, you're putting your life in their hands. Look for teamwork. Look for a treatment center that encourages their health care professionals to work as a team in determining treatment for each patient's unique situation. In these multidisciplinary environments, health care professionals often meet regularly to discuss a patient's status and test results and coordinate recommendations for the patient's optimal treatment. " Have a look there if you wish and if you have objections or corrections, I can forward them to Jerry. Although I don't think he's looking forward to making changes to the FAQ, apparently he's keeping lists of suggestions. Best, J > Hello - > [quoted text clipped - 5 lines] > are considering seeking more treatment in New York, Philadelphia or Maryland > (Johns Hopkins). Thank you. Hello "Pit". What's a pitdiver? mosh pit? or cave diving? Either way, it's brave. If it's a mosh pit, I stand back and duck from flying objects. <g> It's good of you to offer to search out information for your best friend and his father. Primary liver cancer is bad news, Stage IV is very bad news. What is his age please? Where has it spread to? (sorry about the questions, but it sometimes helps us know the specifics). I was just wondering what made them think they'd get better care elsewhere than where they are? The further along into chemo, usually the less well a person feels, unless they're giving a palliative dose. There are standard protocols for the type and stage of cancer. I'm from Canada, so unless a very special cancer/situation, usually the protocol suggested is what we go with. Help me to understand this wanting to seek treatment elsewhere, if you would, please. Keep in touch, we can likely help along the way. J My mom's friend had stage 4 breast cancer and never thought she wouldn't make it and she did come through it. Now two years later she has lung cancer which they are calling breast cancer in the lungs. She says she will pull through this too. Attitude and strength are important. He's in for a very hard time. My mom survived stage 3b lung cancer and shouldn't have. A couple of drs mentioned they hadn't had a patient come this far. She was in a trial. I lurk here and it is very helpful. Buy books for him, do a search on www.amazon.com also get him books on coping with it and keeping him informed. Make sure the people that love him take care of themselves through this too. caretakers are under much stress. Good luck, sorry all news isn't great. Liver Cancer Stages Stage I consists of a single tumor no larger than 2 cm (about ? inch) in size, with no progression into the blood vessels. Patients with Stage I have the best prognosis. Stage II is a more advanced disease with vascular (blood vessel) involvement and/or tumor(s) larger than 2 cm (3/4 inches) in diameter. Cancer in the blood vessels provides a route for malignant cells to move to other sites and has a significant negative effect on prognosis. Large tumors are also more likely to be associated with vascular involvement. Stage III disease generally indicates disease progression in which the tumors are large and may include lymph node and vascular involvement. When patients are initially diagnosed at this stage, prognosis for survival is usually less than one year. Stage IV disease reflects widespread, significant malignant lesions as well as vascular invasion and lymph node involvement. Prognosis for patients with this late stage disease is poor. Few patients survive more than one year after transplantation or surgery. > Hello - > [quoted text clipped - 5 lines] > are considering seeking more treatment in New York, Philadelphia or Maryland > (Johns Hopkins). Thank you. > Hello - > [quoted text clipped - 5 lines] > are considering seeking more treatment in New York, Philadelphia or Maryland > (Johns Hopkins). Thank you. http://www.merck.com/mrkshared/mmanual/section4/chapter47/47c.jsp The prognosis for hepatocellular carcinoma is usually grim, and treatment is generally unsatisfactory. Surgical resection provides the best hope but is suitable in only a few cases. Patients with small localized tumors may have prolonged survival after resection, but the diagnosis is usually established late, and death often occurs within a few months. The tumor is not radiosensitive, and chemotherapy is usually unsuccessful, even when hepatic artery infusion or chemoembolization is used. Moderately good long-term survival rates have been reported after liver transplantation, but this may largely reflect selection bias for patients with relatively small localized tumors. Most experts remain wary of transplantation for malignancy. Once aggressive treatment becomes inappropriate, care should focus on relieving pain and suffering (see Ch. 294)." J Hi J, As far as I knew, they didn't do transplants on CA patients, period, Especially if they still had the disease and weren't 'cured' for at least ten years. This was new information to me. Very interesting. Hi Pit, I have a friend whose father is also in stage four. His began in the bowel/colon and then moved to the liver and the bone. He has been a walking miracle because he had the 'trial chemos' done in at Massachusetts General Hospital in Boston. They are very good there. His cancer was in remission for about 6 months and then bounced to the bone, and he is still fighting the odds. They told him originally 3 years ago that he had 6 months and to sell his business. Fortunate for him, he was accepted in the studies. However, trials are very selective and may not work, so it is best to do your research first. However, if he is going to shop around for opinions, I would say to try there as well as the other places. It can't hurt to get some options, but in my opinion, he should do it very quickly. Take care Salisha > Hi J, > > As far as I knew, they didn't do transplants on CA patients, period, > Especially if they still had the disease and weren't 'cured' for at least > ten years. This was new information to me. Very interesting. Hi Salisha, it's only under certain specific conditions and very rare, is my understanding. > Hi Pit, > I have a friend whose father is also in stage four. His began in the [quoted text clipped - 9 lines] > some options, but in my opinion, he should do it very quickly. Take care > Salisha If that's UMass, Lowkey went there also http://tinyurl.com/wrim Diagnosed July/2000, he started slow since he did not have symptoms and did his research into trials etc. He did have problems all along with vomiting, one his last challenges on a new medication for which he won a "lottery" to enter it, (Erbitux), was a "vomiting without nausea" thread. He passed away last November to our surprise of a brain bleed. I'm sure he had rough times, but I tend to remember all the good posts and just the last 3 months where he was having quite a bit of difficulty with symptoms and the mix of medications he was on. So three years for your friend's father is very comparable to Lowkey and doing very well, IMO. Hugs J >Hello - > [quoted text clipped - 5 lines] >are considering seeking more treatment in New York, Philadelphia or Maryland >(Johns Hopkins). Thank you. Whatever you decide to do, make sure ... double sure ... his insurance covers it. I'm going though a nightmare because I was on a trial program along with the regular Folfox regimen. Somehow the company found out about the trial and now say they are not obligated to pay anything! I live about 20 miles from you and am getting my treatment at U Penn. I'm reasonably happy with my treatment. The personnel are 5-star. Best wishes on your friend's father. You'll find all kinds of caring and information here. Keep lurking. _________________________________ "Take a little 5FU, leucovorin and oxaliplatin for thy stomach's sake." -- 1 Timothy 5:23 (adapted) |
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