Aa
Is chemo warranted
While it offers a viable (and only) solution / hope for many, it is a well known fact that chemotherapy in the form of carboplatinim, taxol or cisplatinim results in a miscellany of side effects depending on dosing regimens. However, one of the questions that we desparately trying to come to grips with is: at what point do the risks outweigh the benefits (?).
While I am sure (or at least I hope) that there is a tremendous amount of data out there to answer this question from a statistical standpoint, the underlying question that I have is how good are the statistics ?? In terms of risk vs benefit, wouldn't it be better to consider some of the new therapies that are out there (i.e. adoptive T-cell therapy, etc.) even if they have shown more promise for late stage cancers? While I respect your "medical" opinions very much, I think what I am asking for is your "intellectual" opinions not only as doctors but also as human beings.
While I am sure (or at least I hope) that there is a tremendous amount of data out there to answer this question from a statistical standpoint, the underlying question that I have is how good are the statistics ?? In terms of risk vs benefit, wouldn't it be better to consider some of the new therapies that are out there (i.e. adoptive T-cell therapy, etc.) even if they have shown more promise for late stage cancers? While I respect your "medical" opinions very much, I think what I am asking for is your "intellectual" opinions not only as doctors but also as human beings.
I was wondering the same thing about Elizabeth - her profile has nothing to do with ovca. Hopefully she just wandered onto the wrong forum and will realize it and get back to the forums she belongs to. It is so sad to see valuable people with such great insight and advice like you and Ronni leaving or considering leaving this forum.
This woman, Elizabeth, has only been a member since this month and on one post if I recall correctly she admits she is having trouble finding her way around MedHelp. That said, perhaps the reason she has sought out MedHelp at all (based on her profile) is also the reason for the hurtful, off-the-wall posts and emails and that could be taken into consideration when reading her posts. There would be no need to respond to posts like that, or give credence to any wacky emails. I really hope Ronni thinks it over, takes a little break, and comes back to join us. Sometimes, as my mother used to say, we need to consider the source. Hope you are doing well and please stay with us. Chris P
This woman, Elizabeth, has only been a member since this month and on one post if I recall correctly she admits she is having trouble finding her way around MedHelp. That said, perhaps the reason she has sought out MedHelp at all (based on her profile) is also the reason for the hurtful, off-the-wall posts and emails and that could be taken into consideration when reading her posts. There would be no need to respond to posts like that, or give credence to any wacky emails. I really hope Ronni thinks it over, takes a little break, and comes back to join us. Sometimes, as my mother used to say, we need to consider the source. Hope you are doing well and please stay with us. Chris P
Yes, perhaps we should surf all over the various forum's getting folks upset like these few do here. It's just a few who seem ignorant of modern medicine. Coupled with this, they are rude. I don't think anyone should leave this forum where they are NEEDED because of a few people who don't even have ovarian cancer!
Seriously, I would NOT go to other forum's just to start trouble and critisize posts. It is disruptive and upsets some ladies who are fighting for their lives on this forum. The pests need to either join our discussions on an intelligent level or go somewhere else.
Perhaps their consciences will guide them.
Teresa
Seriously, I would NOT go to other forum's just to start trouble and critisize posts. It is disruptive and upsets some ladies who are fighting for their lives on this forum. The pests need to either join our discussions on an intelligent level or go somewhere else.
Perhaps their consciences will guide them.
Teresa
I have a list of stage 3 and ovca ladies, who no longer come on this forum because of this sort of thing. Now Vegas says she is leaving. I must add another to my personal email, so it is getting close to the time I no longer will have to come here either.
I have no idea why elizabeth is in this cancer forum, or why she sent a nasty private email to vegas. This is ridiculous. I guess the cancer ladies need to go on other forums and give our opinions and send them nasty emails.
I have no idea why elizabeth is in this cancer forum, or why she sent a nasty private email to vegas. This is ridiculous. I guess the cancer ladies need to go on other forums and give our opinions and send them nasty emails.
I believe Vegas2cr was merely using an analogy. She knows what she is talking about when it comes to OV/CA. She is a valuable asset to this community.
Teresa
Teresa
pennicillen was discovered by marie curie---is this stupid argument over antibiotics-are there kickboxing classes on this medhelp?
Have no fear you won't have to worry about how I am saying things lately. anymore.... I will no longer post and so you and all your friends can be happy..making certain no one heaven forbid disagrees with you.... One last thing.. my post was to you because I felt like I was talking to you..and with you.. I have re read and see no problem with my words... however even when I wished you the best that was not good enough. Okay.. but if you think for one minute you would be alive today with stage IV and no chemo... then I I truly do feel sorry for you... So you and others can go and live in la la land...again no worries this is my last post... Ronni
Perhaps it's the way you have been saying things lately...and it might have been my fault cause I omitted a word in my sentense about research " so our own research and make a decision to try or not to try" there should have been the word "do" between the so and our. "So do our own research and make a decision to try or not try".
Your message to me was derogatory and if you don't mean it as a personal attack, then you should not have adrressed it to me. You could have posted as a general comment..
Your message to me was derogatory and if you don't mean it as a personal attack, then you should not have adrressed it to me. You could have posted as a general comment..
It was my opinion I said that... I even said "I have to agree to disagree with you". I never will understand why everyone gets insulted.... I use acupuncture, alot, I use reishi mushsrooms I eat real wel I am a type 1 diabetic since I was 14 years old... Why oh why can we not have a discusion and feel strongly about it... I wish yu the best..
If I understood correctly, Luv-my-Mum was asking for our opinions and what I wrote is my opinion. You are entitled to your opinion and you do what you think is best for you and your family.
Do you know how penicllin was discovered?? I believe it was research when it was accidentally discovered... You can not in my humble opinion do research on yourself.. I owe it to my family to try to stay alive.. I know we have all got our own strong opinions... I had a damn bowel resection and if you think I would stick a coffee enema well I have news for you I wouldn't... the last thing I want is a colostomy...I can not rely on someone to tell me helllo coffee enemas cure my cancer. or accupuncture or anything else... I don't live under the American rules so we have different trials and they try different things... mushrooms here are common.. But please don't talk about not researching...
Do you think they thought penicllin or lortabs or anything else was not resesarched... sorry I have to agree to disagree with you
Do you think they thought penicllin or lortabs or anything else was not resesarched... sorry I have to agree to disagree with you
If I had known what I have learned since being dx, I would have never started on chemo. I feel we are just lab rats being experimented on. Oncs don't really know how to cure us so they depend on pharmaceutical companies and what they claim they have discovered. So oncs start with carbo/taxol and go down the list as we react to each medicine. In the meantime, our organs are falling apart from the poison and side effect and our immune system can no longer maintain our organs.
I did 12 rounds of chemo (stage4) eventhough I started a reaction to the carbo at round 10. That's when I felt that something was wrong, why continue this regiment if my body was no longer accepting the meds and nothing had changed in my last 2 ct scans. So i consulted with the 2 other oncs who both told me to stop because there was no sign of cancer and continuing the meds would end up killing me. So I went back and told my primary onc that i wanted to stop. she was very reluctant and made me sign a waver!! The whole time I was on chemo, my goals was to get the toxins out of my body as quickly as possible so i too added my alternatives (acupuncture, reishi mushrooms, vitamins and supplements, enemas and what ever else would keep my immune system strong.
I am willing to try alternative treatments. How much more harm can it be than chemo meds? the problem is that most people have to be convinced with documented info that these methods work. Whose is going to finances these kinds of research? We have to relly on people who have tried and believe that it helped them , so our own research and make a decision to try or not to try.
The question is how much are you willing to suffer to maintain your quality of life and/or get cured.
I did 12 rounds of chemo (stage4) eventhough I started a reaction to the carbo at round 10. That's when I felt that something was wrong, why continue this regiment if my body was no longer accepting the meds and nothing had changed in my last 2 ct scans. So i consulted with the 2 other oncs who both told me to stop because there was no sign of cancer and continuing the meds would end up killing me. So I went back and told my primary onc that i wanted to stop. she was very reluctant and made me sign a waver!! The whole time I was on chemo, my goals was to get the toxins out of my body as quickly as possible so i too added my alternatives (acupuncture, reishi mushrooms, vitamins and supplements, enemas and what ever else would keep my immune system strong.
I am willing to try alternative treatments. How much more harm can it be than chemo meds? the problem is that most people have to be convinced with documented info that these methods work. Whose is going to finances these kinds of research? We have to relly on people who have tried and believe that it helped them , so our own research and make a decision to try or not to try.
The question is how much are you willing to suffer to maintain your quality of life and/or get cured.
You said:
"For my mum, we opted for 'standard' chemo treatment and complementary Chinese medication"
Could you tell us more about the complementary Chinese medication that your Mum used with chemo?
"For my mum, we opted for 'standard' chemo treatment and complementary Chinese medication"
Could you tell us more about the complementary Chinese medication that your Mum used with chemo?
I can't remember who said this, but they said something like that they are hoping the chemo will kill the cancer before it kills them. which is actually fairly accurate...if you think about it, this is cytotoxic chemicals that are being pumped into you intravenously...not something you find being done at the health food stores mind you! :)
that's the biggest thing, and it's why most have reduced dosage later on and typically when some oncologists won't even allow chemo anymore because some patients have such weakened immune systems etc.
I think everyone answered your question well...it's a range of reasons that is specific to the person. quality of life is a very good one, but one that is hard to grasp when you are fighting a killer :(
that's the biggest thing, and it's why most have reduced dosage later on and typically when some oncologists won't even allow chemo anymore because some patients have such weakened immune systems etc.
I think everyone answered your question well...it's a range of reasons that is specific to the person. quality of life is a very good one, but one that is hard to grasp when you are fighting a killer :(
I agree that this is more of an individual choice. But upon being dx with cancer, most of us tend to go with what our Drs reccommend because at that time most of us do not know much about what we are facing, and figure that our Drs know the best way to treat us. And if the standard treatment has had good results, we will most normally go that route.
Whan a person is dx, everything seems to happen so fast and you are trying to absorb so much, that most of us do not even think about new therapies. It isn't until you have been a little further down the road that you even begin to learn about new medicines and treatments. It would be nice if other options were provided for us, but since many are still being questioned as to how well they actually work, I think that is probably why we are not given those options. Our Drs want to stick with what they know will work for most of us. In thinking back, I would probably go that route myself. If I had to choose between something that does work, and something that is questionable, I would go with what works.
Chris
Whan a person is dx, everything seems to happen so fast and you are trying to absorb so much, that most of us do not even think about new therapies. It isn't until you have been a little further down the road that you even begin to learn about new medicines and treatments. It would be nice if other options were provided for us, but since many are still being questioned as to how well they actually work, I think that is probably why we are not given those options. Our Drs want to stick with what they know will work for most of us. In thinking back, I would probably go that route myself. If I had to choose between something that does work, and something that is questionable, I would go with what works.
Chris
Sorry. I must have misintepreted about the giving up part.
But....for my mum at least, the standard treatment worked, at least for the time-being.
But....for my mum at least, the standard treatment worked, at least for the time-being.
I am sorry to know the tough choice you have to make. For my mum, we opted for 'standard' chemo treatment and complementary Chinese medication. As for experimental drugs - we did not even consider because it is.....experimental. Yes, the side-effects of chemo could be terrible. But at this point of time, it still offers the better chance to beat the odds. Yes, there is a chance that carboplatin may not work but for most people, it gave a reprieve and put the cancer under control.
My mum was diagnozed with 4th stage cancer - and if the treatment does not work - we are looking at perhaps 6 months before 'the end'. For my mum, the gamble worked. She has very little side-effects from chemo, the bloodcount did not drop amd she is in remission currently. If we have not taken the gamble, my mum would not have a fighting chance.
Do not ever give up. There is always a chance that something would work for your mum. I have spoken to a 10 years survivor (still in remission) of 4th stage ovca. Carboplatin was considered experimental drug then. She took it with 'no dilution', something which is different from now where the dosage is given according to weight (back then, the doctors have not figure out what dosage to give so....they guesstimate). When the doctor told her that carboplatin was her 'last hope' and that it could probably just prolong her life by 6 months, that strong lady took http://www.medhelp.org/posts/show/570451#
Post Commentit. She almost died during the process - she had all the side-effects. She had no one to look after during her treatment and she told me once she wanted a glass of water and she just fell off the bed and crawled to the kitchen and somehow lifted herself up to get a glass of water. But she survived - a 10 year old survivor. Carboplatin saved her.
So, never, never give up.
My mum was diagnozed with 4th stage cancer - and if the treatment does not work - we are looking at perhaps 6 months before 'the end'. For my mum, the gamble worked. She has very little side-effects from chemo, the bloodcount did not drop amd she is in remission currently. If we have not taken the gamble, my mum would not have a fighting chance.
Do not ever give up. There is always a chance that something would work for your mum. I have spoken to a 10 years survivor (still in remission) of 4th stage ovca. Carboplatin was considered experimental drug then. She took it with 'no dilution', something which is different from now where the dosage is given according to weight (back then, the doctors have not figure out what dosage to give so....they guesstimate). When the doctor told her that carboplatin was her 'last hope' and that it could probably just prolong her life by 6 months, that strong lady took http://www.medhelp.org/posts/show/570451#
Post Commentit. She almost died during the process - she had all the side-effects. She had no one to look after during her treatment and she told me once she wanted a glass of water and she just fell off the bed and crawled to the kitchen and somehow lifted herself up to get a glass of water. But she survived - a 10 year old survivor. Carboplatin saved her.
So, never, never give up.
You are absolutely right about not being offered the more experimental new treatments. We are at the mercy of what our insurance will cover as well as what our doctors are willing to try. I was not given any options. I am glad the T-cell therapy worked for her. Marie
I too, think it is an individual's choice based on response,age and there is with out a doubt quality of life issues versus quantity of life. I am 53 have stage iv, chronic ovca and have had many different chemos almost continuously since 2003 .Am glad to say it is 2008, I am still breathing... happy and hopeful for many more years. It has been a turbulent ride at times but I do not regret pursuing any treatments I have had so far. Yes, side effects are not FUN, but there are many medicines and ways to counteract or prevent them.
Folks, I am absolutely NOT advocating giving up !! What I am saying is that doctors and patients should seriously evaluate and explore other equally effective options that are out there, such as the one mentioned above.
There seems to be a tendency to "almost blindly" default to standard protocols, based just on statistics. Most people aren't even told of other options...until they are in the advanced stages and chemo hasn't been as effective. I know of someone who went through a number of different chemotherapies that didn't work. They finally put her on an adoptive T-cell therapy, which not only worked, but also had virtually no side effects that chemo had.
My question is why couldn't they have started with the alternate option in the first place. She wasn't even told of other available options.
There seems to be a tendency to "almost blindly" default to standard protocols, based just on statistics. Most people aren't even told of other options...until they are in the advanced stages and chemo hasn't been as effective. I know of someone who went through a number of different chemotherapies that didn't work. They finally put her on an adoptive T-cell therapy, which not only worked, but also had virtually no side effects that chemo had.
My question is why couldn't they have started with the alternate option in the first place. She wasn't even told of other available options.
I think it's an idividual response as well.... My mother was dx Stage IV in March and she's had a hell of a time with recovery from surgery and infections etc....
That being said..she's been very discouraged as of late... but I keep telling her that its too early to give up the fight. I think when people hear "late stage" they think death ... right away... but that's not always the case.... and perhaps a few years on this earth more with family and friends holds more worth than not.
That being said..she's been very discouraged as of late... but I keep telling her that its too early to give up the fight. I think when people hear "late stage" they think death ... right away... but that's not always the case.... and perhaps a few years on this earth more with family and friends holds more worth than not.
At what point do I want to live and at what point do I want to die.. that is the question..Only each individual person can answer that... I know for me I could never ever ever look my husband and kids in the eyes and say I give up...
Trials are just that trials.. in the beginning the tried and true is the only way for ME. I am stage iV and grateful to still be alive 15 months later...
Trials are just that trials.. in the beginning the tried and true is the only way for ME. I am stage iV and grateful to still be alive 15 months later...
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