Talk Cancer

Question:

I’m a journalist in New York City researching an article on clinical trials and how patients can find them on their own. I’m looking for people to interview about where they go for information on cancer and clinical trials, and what their frustrations are in doing searches on Thanks. Before you buy.

Response:

I went to the largest teaching hospital in the area.  They have a web site, that lists hundreds of trials that they are participating in.  Sometimes it isn’t enough to find a trial, you need to find a trial that will work for you, that is still open to new patients, that you can get to (logistically). I know there are other trials, but I suspect it is more like a needle in a haystack, when you try to search the whole country, or you don’t have access to a listing like I found. HJ – Hide quoted text — Show quoted text – I’m a journalist in New York City researching an article on clinical trials and how patients can find them on their own. I’m looking for people to interview about where they go for information on cancer and clinical trials, and what their frustrations are in doing searches on Thanks. Before you buy.

Response:

Can anyone tell me first have they participated in any clinical chemo/radiation studies/trials? and secondly, does it take long to start therapy. My husband signed up for a special study 4 weeks ago, and his neck tumors keep growing. He has squamous cell carcinoma in his throat. I think time is being wasted where he could be getting his chemo treatments. He had surgury 6 weeks ago for a belly tube and port insertion in his chest, what is the delay? We’ve asked the doctors and all they say is these things take a while, how much more "while" can we afford to loose? thanks

Response:

says… Can anyone tell me first have they participated in any clinical chemo/radiation studies/trials? and secondly, does it take long to start therapy. My husband signed up for a special study 4 weeks ago, and his neck tumors keep growing. He has squamous cell carcinoma in his throat. I think time is being wasted where he could be getting his chemo treatments. He had surgury 6 weeks ago for a belly tube and port insertion in his chest, what is the delay? We’ve asked the doctors and all they say is these things take a while, how much more "while" can we afford to loose? thanks

Hello I.M., I was involved in a chemo clinical trial, and I have investigated several others. Once I signed up, the trial began in less than 2 weeks. I had to have a Mediport installed, and a whole pantload of tests to get baseline data, but as soon as these were finished they were pumping me full of drugs. In many trials, there are very specific requirements that have to be met before one can start … for example, you might need to have six weeks between any surgery and the start of the trial protocol, or you may need to be ‘off’ of chemo for six months, that sort of thing. In any event, your doctor should be able to tell you exactly why the trial hasn’t started for you and yours. If he/she can’t, or won’t, I’d be awfully anxious. After all, if they cannot be up front about the trial and it’s schedule, how ‘up-front’ are they gonna be when it comes to the kind of disclosure required by the ‘informed consent’ laws, hmmm? Just something to think about Lowkey.

Response:

– Hide quoted text — Show quoted text – The trials you mention all sound like Stage II/III or Stage III  trials. It is Phase 11 Study of Oral GW572016 for those who have failed with 5-FU in combo with Irinotecan. It is not a blind test – everyone gets the real stuff. From the info I have been given, and what I read thru on-line research, the main concern seems to revolve around heart problems. My guess is that it will be contra-indicated for those with heart problems. Other than that, there is not too much info available. I presume Stage 11 is early in the process. There will be a CTscan after 2 months of treatment and I have had full disclosure. I know it may be of no use to me, but, like you, someone else may benefit. I just don’t want to endanger myself by giving the tumours time to grow. My friend knows an internist who is considered one of the tops in his field here (in Canada). She is asking his opinion on this matter.

Then Go for it Cathy! Seems you’ve already done "due diligence". I plan to ask my own onc about this trial. I suspect I’ll be ‘de selected’ due to a coronary arrythmia, but what the hey. Thanks for the info & the interesting conversation Lowkey the lowly Labrat.

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After much research on the background theories of the research drug – I have declined. The targetted protein is quite common in breast tumours, but many research papers deem it of little significance in colon tumours. My theory is that the drug company is trying to prove a hypothesis that the drug will be of benefit to colon patients as well as breast patients. But, I just don’t want to be part of a test that could have major failure. Will go straight on to oxaliplatin. I have already been approved for 100% subsidy.

Response:

After much research on the background theories of the research drug – I have declined. The targetted protein is quite common in breast tumours, but many research papers deem it of little significance in colon tumours. My theory is that the drug company is trying to prove a hypothesis that the drug will be of benefit to colon patients as well as breast patients. But, I just don’t want to be part of a test that could have major failure. Will go straight on to oxaliplatin. I have already been approved for 100% subsidy.

Cathy, I was on Oxaliplatin for quite some time. In my case, the side effects were pretty mild, but we both know that these side effects are strongly influenced by the patients makeup, prior history and the exact mechanism and dosing used for the chemo drug. In any event, my worst complaint was sensitivity to cold in my hands and feet – this lasted all through the treatment time period and for several days during ‘rest periods’ too – often as long as a week. he oxali did do me too much good. It kicked ass for about three to six weeks and then stopped working completely. All I had were the nasty side effects and no tumor necrosis or shrinkage. I’m now on Xeloda – so far, it is still too soon to knew if it is doing anything good or not. Thanks for the update. and keep them coming. BTW, I think you made the correct call on entering the trial, given what you said in this post. Lowkey the lowly Labrat – Hide quoted text — Show quoted text –

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I have colon cancer mets. In Jan. CTscan showed spots in lung liver and pelvis had significantly shrunk. Last week scan shows lung spots – shrunk, pelvis spot – no change and liver spot grown 1 cm. Have been taken off irinotecan, LV and 5-FU. Dr. gives options of clinical trial – chemo pills . Too lengthy to explain here, but is for those who have failed on the aforementioned protocol. Or oxaliplatin with 5-FU. Or try the clinical for 2 months and see what happens. My estimated life expectancy is less than 2 yrs. Any views on this??

Cathy, I am also a colon cancer patient with mets in the liver, lungs, lymph, kidneys, yada yada, yada yada. I have been through two clinical trials, including one that was part of the final ‘certification’ test for Oxaliplatin. In both of these clinical trials, the chemo causes the tumors to shrink significantly, but the drugs stopped working after a few months. At the moment, I am taking Xeloda ( a pill form of 5FU) for chemo. I’m having absolutely no problems with Xeloda side effects, but on the other had, I have no idea how well it is working (or not working). My advice on clinical trials? My main reason for entering them was that I hoped to contribute something to the battle against this awful disease. If you go into a clinical trial, you MUST be prepared to face the fact that the treatment they plan to use on you may not work as well as the ’standard’ treatments already in use. In point of fact, you could be shortening your life considerably by entering the trial. The trials you mention all sound like Stage II/III or Stage III trials. This leads me to a second point. IF the regimen is in a stage III trial, there is a LOT of data from the stage I and II tests. This info includes side effects, the rates at which these effects occurred, the severity of the effects and how many patients (if any) died in these earlier trials. Before you enter a trial, your oncologist must make this kind of info available to you, and be willing to explain to you all the jargon and terminology that you don’t understand. Take full advantage of this ‘full disclosure’ rule before risking your life. I mean, I was quite willing to enter a trial, but I wasn’t nuts enough to enter a trial where 20% of the patients were killed by the treatment. Also, bear in mind that no one can FORCE you to stay in a trial once you’ve started it, if you want OUT. They can cajole you by saying that another month (or week, or round of treatments) will provide so much more data, but despite this, it is YOUR body and YOUR decision. You can opt out of the trial at any time. Finally, if you are entering a trial with the hope that the trial drugs will be far more effective than the ’standard of care’ drugs, make absolutely sure that you understand how the trial is set up. Some trials are double blind, which means you only have a 50/50 chance of getting the ‘new’ stuff. Worse, you won’t even know what you’re getting until the trial is over (in most cases). Some trials will let you know what you’re getting, but they may randomize the patients so that there is still only a 50/50 chance that you’ll be getting the new stuff. Ask your oncologist exactly what kind of trial you are getting into and make your decision based upon whether you can live with the 50/50 chance, and with the uncertainty of not knowing what they’re pumping into your body. That’s the advice from this lowly Labrat. If you’d like to discuss this in more detail privately, I’ll send you my real email address. Lowkey the lowly Labrat PS If you know how to use the Google archives, you can find many of my notes on these trials that I posted while I was in them. Just look for stuff posted by Lowkey prior to say, December of 2002. L.

Response:

The trials you mention all sound like Stage II/III or Stage III  trials.

It is Phase 11 Study of Oral GW572016 for those who have failed with 5-FU in combo with Irinotecan. It is not a blind test – everyone gets the real stuff. From the info I have been given, and what I read thru on-line research, the main concern seems to revolve around heart problems. My guess is that it will be contra-indicated for those with heart problems. Other than that, there is not too much info available. I presume Stage 11 is early in the process. There will be a CTscan after 2 months of treatment and I have had full disclosure. I know it may be of no use to me, but, like you, someone else may benefit. I just don’t want to endanger myself by giving the tumours time to grow. My friend knows an internist who is considered one of the tops in his field here (in Canada). She is asking his opinion on this matter.

Response:

I have colon cancer mets. In Jan. CTscan showed spots in lung liver and pelvis had significantly shrunk. Last week scan shows lung spots – shrunk, pelvis spot – no change and liver spot grown 1 cm. Have been taken off irinotecan, LV and 5-FU. Dr. gives options of clinical trial – chemo pills . Too lengthy to explain here, but is for those who have failed on the aforementioned protocol. Or oxaliplatin with 5-FU. Or try the clinical for 2 months and see what happens. My estimated life expectancy is less than 2 yrs. Any views on this??

Response:

I have colon cancer mets. In Jan. CTscan showed spots in lung liver and pelvis had significantly shrunk. Last week scan shows lung spots – shrunk, pelvis spot – no change and liver spot grown 1 cm. Have been taken off irinotecan, LV and 5-FU. Dr. gives options of clinical trial – chemo pills . Too lengthy to explain here, but is for those who have failed on the aforementioned protocol. Or oxaliplatin with 5-FU. Or try the clinical for 2 months and see what happens. My estimated life expectancy is less than 2 yrs. Any views on this??

    My wife went through what you are going through now, but you have more mets. Her life expectancy was 12 months, she is now 23 months and expected to die this week. What you should do, IMO, is try whatever they are willing to give UNTIL it begins to make you utterly miserable. As soon as you are miserable you have probably reached a point of no return and will only suffer more. My honey took Oxaliplatin which nearly killed her. She quit when the going got really rough and was able to recover her health for 9 glorious additional months. We have three kids in elementary school so this was like an eternity for them of bonus time with their mother. You will die of this disease most likely, since you have mets both known and unknown…. How you use the time left you is entirely in your hands. If you get a good response from something, without a loss of quality of life, just say a prayer of thanks every day. My wife got zero response from her 4 chemo tries.     Please stick around on this newsgroup, you have joined the club nobody wants to join, but you’re in it now! Let us help you and guide you through the journey ahead. That is why we’re here.     CAT =(^-^)=

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does any one have the results of the latest clinical trials on shark cartilage? Yes ..trials were done..but I am having difficulty getting them.

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does any one have the results of the latest clinical trials on shark cartilage? Yes ..trials were done..but I am having difficulty getting them.

As far as I know…the trials are still ongoing…and thus a lid is placed on the preliminary results until there are enough statistics…

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