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Medical Forum / Diseases and Disorders / Cancer / January 2004Should Chemo Patients suffer more ?
Okay folks, You really need to do some research here and provide some feedback. This may seem a minor issue to some only because it doesn't affect you - but this is stuff that is affecting a lot of people in the U.S.A. Please check out the side effects of the following drugs Kytril, Anzemet, Decadron. You can locate the information as www.gettingwell.com and entering the name of the drug. Just to list some of the effects here: Hypotension, Bradycardia, Tachycardia, fever, Dyspepsia, Anorexia Vertigo, Dysuria, Ischemia, Glaucoma, Torn Tendons, Protruding Eyeballs, Reduced resistance to infection These drugs have been approved and are in use for patients to assist in reduction of nausea and vomiting for cancer patients. Slow down and think here - The FDA has stated these drugs are safe for use -- would you personally want to take these drugs with those side effects mentioned ? We want to introduce products to the U.S. called MorningWell and TravelWell that through sound and music relieve nausea and vomiting. Nothing enters the body - and there are no side effects or possibility of overdose. However, the FDA is stating to us that we need to prove its safe. Does anyone see the oxymoron here ? The FDA is allowing the use of drugs which from the side effects can make your health worse - however we have to prove that sound and music is safe ? Do we really need to have anyone that is going through chemotherapy - any worse than they all ready are. Going through cancer treatments is do debilatating - why should we allow the FDA to prevent devices which can relieve the nausea -- and sell products which could actually make the patient feel worse. I know there are at least two people that are going to read this.... please copy this email and spread it around. Even today, the FDA is announcing that 56,000 people visit hospitals each year due to overdosing with Tylenol, acetaminophen -- and they are going to educate the public using $20,000 in funds - according to an article on CNN today (January 24, 2004). Does the American public (YOU) want to allow the FDA to pump out drugs like I have mentioned .... or would it be more realistic to allow a product which through sound and music relieves nausea and vomiting. The products MorningWell and TravelWell are also currently being sold in Britain and Australia - with no reports of overdose, or any side effects. I want your opinion -- and your assistance in appealing a decision affecting the release of a safe product that could assist millions in the U.S. without the threat of making the patients health worse. My personal email is open to receive your comments as well wrowe@onewest.net Wayne Rowe Sometimes the benefits outweigh the risks. Chemotherapy isn't exactly user friendly. Look at the precautions nurses take for themselves when administering it. However, aggressive diseases need aggressive treatments. >>These drugs have been approved and are in use for patients to assist in reduction of nausea and vomiting for cancer patients. You said it....Cancer Patients....which disease do you think they are more concerned about. Vertigo? Which some already have from brain tumors. Glaucoma? Anorexia? and many of the rest are side effects from cancer and from chemo treatments, if the effect are worsened by a certain medication, they can be changed, it is not like these patients aren't followed by a team of highly trained doctors and nurses! >>would you personally want to take these drugs with those side effects mentioned? I have seen the effects chemo had on my boyfriend. Lets just say it wasn't pretty! When he took decadron, he had increase appetite, more energy and was more alert, considering he was sick as hell without the drug and had not quality of life, yeah, if it works and the symptoms of the medication are easier to handle than the symptoms without the drug, why not? Information is good to have but stop trying to scare these people! >>We want to introduce products to the U.S. called MorningWell and TravelWell that through sound and music relieve nausea and vomiting. Nothing enters the body - and there are no side effects or possibility of overdose. However, the FDA is stating to us that we need to prove its safe. As for music and sound, I work in sensational therapy with the aging population, however, my methods had to be learned, and they are carefully documented. The mind works in mysterious ways. Subliminal messages can make some people do strange things. The FDA would like you to prove that if individuals listen to music they will be helped not hindered in the fight against cancer. Not every wants to listen to sound and music when vomiting! Some people already use your method! There can be side effects, music has a profound effect on the mind. Sure, there may not be hypertension or Glaucoma, but how about depression, despair, or even suicidal tendencies? Aren't they just as hazardous to health. Music and sound can do this. This is what the FDA wants you to take a look at. I am not saying that it is a good idea, I firmly believe in sensation therapy. Working with Alzheimer's patients and stroke patients, I have seen miracles happen, but you need to know how to do it, and monitor closely. Illness of the body also affects the mind, please remember that when you come here, please don't try to scare people into using your method. It isn't fair. Salisha What are you proposing in there place ? What are the alternatives? Every drug has side effects - I can't think of one that is totally without risk? These drugs make chemo doable but are you trying to rid the FDA of these too? > Okay folks, > [quoted text clipped - 57 lines] > > Wayne Rowe W.R, in all wisdom, typed: > Okay folks, > [quoted text clipped - 8 lines] > > Wayne Rowe Oh, so that's what this is all about. Yes Wayne, in order to make these claims you're going to have to prove it to the FDA. Lance ***** To All: I am proposing and asking for your opinions on using something that doesn't have side effects to treat nausea and vomiting. Why does anyone going through Chemo - want to consider taking another drug with side effects ? Lance, an unbelievable response. You make it sound like I am some sort of evil person. As I stated in my previous post - the products are being sold in Britain and Australia without any side effects being reported. The products have been proven as safe and effective 90% of the time. Wayne > W.R, in all wisdom, typed: > > Okay folks, [quoted text clipped - 17 lines] > Lance > ***** One day of side effects from chemo who be one day too many. Could you link the clinical trials showing the effectiveness of your products. Is your product paid for by health insurance ? As a cancer surivivor I resent people who think can make a buck off my illness. Alex > To All: > [quoted text clipped - 35 lines] > > Lance > > ***** Alex The links you want to take a look at are as follows which all come from the home site of www.morningwell.co.uk http://www.morningwell.co.uk/tpm.htm http://www.morningwell.co.uk/synopsis.htm http://www.morningwell.co.uk/NC.htm Wayne > One day of side effects from chemo who be one day too many. Could you link > the clinical trials showing the effectiveness of your products. Is your [quoted text clipped - 41 lines] > > > Lance > > > ***** These studies where for morning sickness in pregnant women....the choices are listening to your tapes or nothing or no treatment. Alternative treatments such as guided imagery and listening to tapes have been studies in the US and yes the are effective in decreasing symptoms, but no medical professional has ever advocated stopping proven drugs therapy . Furthermore you initial post was sent to a cancer group with listing all the potential side effects of every drug. This is a scare tactic. Obviously you have never been touched by cancer and it you did you would have said this is an addtional therapy......that would have been the responsible posting... I would suggest you get your cancer treatment studied by the FDA before suggestion it to a cancer group. Alex > Alex > [quoted text clipped - 53 lines] > > > > Lance > > > > ***** Alex Yes, the product is branded for morning sickness. However it has been used by people going through Cancer to relieve the nausea and vomiting that are associated with Chemotherapy. Listing the side effects of three drugs that have been named by the ASCO to help relieve nausea and vomiting is NOT A SCARE TACTIC. If you are getting scared by the side effects that I have mentioned why not check out the drugs yourself at www.gettingwell.com . I see an opportunity to educate you and cancer sufferers... Why should anyone already being subjected to Chemotherapy - have to worry about something like side effects of drugs. - Why don't the Dr.'s prescribing the medication - tell the patients about the side effects ? Why does the FDA approve drugs which have side effects as severe as Bradycardia ? Wasn't it your believe that the FDA was to approve drugs that are safe ? Bradycardia - if you don't know is an extremely slow heart beat. One of my friends currently has been affected this way with drugs - 24yr old Female with a heart rate of 40 beats per minute. As far as not ever being touched by Cancer - Sorry, Alex I was - My mother fought it. Had I known then what I know now I would have happily suggested her use of the tape. After her treatments she would hide in her darkened bedroom for about a week. She was quite literally sick for about a week consistently. This slowed down the second week so she could move around outside her bedroom. She was well one week in four - and was still successfully running a business. YES - Alex I have dealt with cancer. No, I don't intend to scare - but educate - as I already said - why don't the medical professionals providing the drugs tell you this stuff ? Once we are allowed to provide the tapes in the U.S. we will be approaching the American Cancer Society to see if they will assist us in testing the product so that we can work towards a branded product for Chemo. I can't believe that there isn't a little bit of excitement in this group that someone is trying to provide a natural aid - to relieve of nausea and vomiting. Chemo in my opinion should be the last chemicals one would want to tolerate.... why add to the potential of being sick after getting injected with colored chemicals ? Cancer is terrible.... your loved one or yourself could die... Should everyone including the medical professionals not be seeking out ways to improve the cancer patient life while they suffer through the treatment ? No, my mother didn't die of cancer.... she survived. However, she was taken from us very quickly and we didn't get any time to react to what had happened until after the funeral. Her death was quick... one day.. both an Anurism and Heart Attack... I would like to make the life of a cancer patient - as enjoyable as possible.... If you Alex or anyone else in this group doesn't see that -- I feel sorry for you. Someone commented about people making a buck on the suffering.... It would be nice to create the tapes and be able to hand them out to cancer patients... However, if they are generally effective with Chemo - they do cost money to make and then get out. Why not suggest to the companies making the drugs with all the side effects to drop the price - instead of the suggested pricing I have heard of $20- $50 a pill. Wayne > These studies where for morning sickness in pregnant women....the choices > are listening to your tapes or nothing or no treatment. [quoted text clipped - 69 lines] > > > > > Lance > > > > > ***** >>Why don't the Dr.'s prescribing the medication - tell the patients about the side effects ? Wayne, Your comment is not completely accurate....when my BF was prescribed the medication Decadron, he was told of the side effects, and the benefits greatly outweighed the side effects! You said your friend has Bradycardia. Is she battling cancer? Or has she been prescribed the medication for another purpose. You only give half the information and then ask us to be informed. This isn't a fair way to get your point across. As I stated before, sometimes, the benefits outweigh the effects. I commend your mother for still being able to function successfully despite being very ill, but do you think that without the chemo, radiation and other medications she was prescribed for side effects, she would have been able to live to beat the cancer? >> I can't believe that there isn't a little bit of excitement in this group >that someone is trying to provide a natural >aid - to relieve of nausea and vomiting. Chemo in my opinion should be the >last chemicals one would want to >tolerate.... why add to the potential of being sick after >getting injected with colored chemicals ? Potential of being sick? If you will be vomiting from the chemo, any, and I mean any relief that these medications can cause is a benefit, even if it is knock you out so you can get an hours worth the sleep, which is a respite from the nausea. You don't seem to understand what we want to know. The question is, has there been any clinical trials that have studied the effects of music and sounds in Chemotherapy patients as it relates to nausea and vomiting? This is what we want to know. Not in the effects of morning sickness, which is an entirely different type of nausea. The effects of being pregnant do not mimic chemo treatments. The study is moot because it has no bearing on the patients that you are trying to advocate this treatment to. For pregnant women, calming soothing effect may (stress may) have benefits for nausea and vomiting and that is fantastic, but again the case study was not of the population you are addressing here in this news group. >>Someone commented about people making a buck on >the suffering.... It would be nice to create the tapes and [quoted text clipped - 4 lines] >to drop the price - instead of the suggested pricing I have >heard of $20- $50 a pill. Everything has a cost, we all know that, especially being ill with a life threatening disease. How much would you sell these tapes for? Would you not try to make a profit from them? Drug companies are out to make money, we know that, but are you? Drug companies also donate money to research, they donate money to support organizations such as the Canadian and American Cancer Societies, would you? These are questions you need to address to yourself before you try to scare people who are in a very terrifying situation already. You ARE using scare tactics. Most of us know there are side effects to the medications prescribed.For arguments sake, even Birth control has side effects such as blood clots, heart disease, strokes, infertility, nausea, cramping, and vomiting but every day, Millions of women take this little pill to prevent pregnancy and to help with gynecological problems. Do you think that they should also stop these medications because they are causing nausea and have risks that could result in death? Again for most of these women, the benefits outweigh the risks. You must prove your argument. This is what we are saying to you. Your statements do not show proof, they show that you are not willing to answer us truthfully. When you are willing to give whole truths and show effects of your research, we won't be so skeptical, however, you haven't shown us that so far. Salisha No my friend is not battling cancer but Bradycardia is one of the possible side effects of one of the drugs I have researched. I don't know how much help my mom had with controlling the sickness. I do recall, her stating prior to the end of the treatments - I don't want to be sick anymore... I just want to die. No, this product has not been tested with Chemo patients. A number of people have purchased the product and used it with success. Well, it some ways your point is correct - this isn't morning sickness... however the premise of the product is to relieve nausea and vomiting is the same. Our suggested retail on the tapes will be $40.00. Each tape will sold will provide a donation of 50 cents to one of the following charities: - Canadian or American Cancer Society - Give Kid's the World - Pregnancy Resource Center of Ontario, Oregon This information will be mentioned on each product and a total donated will be provided on our website. I am not stating STOP the use of anything. I do believe that people need to be fully educated on the drugs they choose to use. In the case of Chemo.... I am sure that there are those suffering that do not wish to take anything more "drugs" to stop from being sick. My whole intention of this discussion has been lost. I wanted opinions on the use of drugs which have rather nasty side effects ... or the potential of using a tape which relieves nausea and vomiting without side effects. Which is better ? Why pump more human made substances into someone suffering - if someone can offer a solution to the nausea and vomiting through something natural (sound and music). We are appealing the decision of the FDA to classify something as simple as sound and music as a class II medical device. As soon as we are allowed to sell the product for morning sickness and motion sickness - we will approach the Cancer Society to assist us in generating an effectiveness level with Chemo patients. Maybe the question is this ... how many people reviewing this discussion would try something new that doesn't mean the use of drugs ... to relieve the nausea and vomiting ? Wayne >>Our suggested retail on the tapes will be $40.00. Each tape will sold will >provide a donation of 50 cents to one >of the following charities: >- Canadian or American Cancer Society >- Give Kid's the World >- Pregnancy Resource Center of Ontario, Oregon That is a very steep price for a tape, the next question is how would these tapes differ in sounds or music than the popular sounds that are currently on the market for soothing sounds? Other than your research? Still sounds like a scam, sorry. If you have research findings stating that the sound of the sea, or chirping of birds helps nausea or something of the sort, why would someone buy your tapes when they can pick up one similar for $10.99 at Wal-Mart? Gotta think things through I do believe. There are many reputable researchers, musicians and naturalist who tape these sounds and music and donate the entire profit to charitable organizations, therefore, at $0.50/tape you will definitely be making a substantial profit if anyone buys your tapes that is. You are correct, there are people who would rather make their way through chemo without more drugs on top of that.. There is a pill called Zofran, the nickname is called the Golden Nugget. Do you know why? Because this is a precious medication that can do amazing things in the face of aggressive chemotherapy treatments. VAC treatments, and Ifosfomide treatments and other aggressive treatments are terrible and these different any nausiants are wonderful, they not only help with the nausea but they also help with lack of sleep that accompanies being sick as hell! The side effects of this drug are Constipation, diarrhea, dizziness, fatigue, headache. Hence, there isn't many things that can go wrong with this medication. These facts are directly from the website you suggested. As for your mom, I am sorry that she had a tough time. Most cancer patients do. I may not have had cancer myself, but I have seen more than my share of family members with it as well as friends. All of them, meaning 10 of them to be exact, have sworn up and down, that the anti nausiants were a God send when the vomiting started. Exhaustion can make situations worse, and I am sure that each one of them during chemo, had the same thought as your mom, at least once, but obviously if she beat the cancer, she didn't want to die because she had the will to continue on. This is the difference between the statement and the action. At no time did your mother not have the option of quitting chemo treatments, all patients have that option. Some take it and let cancer take it's course, and some fight right up until the end, either beating it or go out with everything they have in them. You mother was fortunate to beat it even though the ends to her life were not as she pictured it, she became a member of a very distinguished and brave group of people. You need to think about your role in this research and who you want to touch with your message and then make sure you have all your ducks in a row before you continue with your message, because if you keep up as you are, there will be no-one left to listen when you have your research completed. Salisha Salisha I am not sure what tapes you are referring to but consider this... If any product is available at this time to relieve nause and vomiting either through Wal-Mart or the Wellness Community... These tapes are illegal - as they haven't been approved as medical devices by the FDA. If the FDA finds the products they could be pulled from availability. What more do I really need to say about the tapes available currently ? > >>Our suggested retail on the tapes will be $40.00. Each tape will sold > will [quoted text clipped - 49 lines] > will be no-one left to listen when you have your research completed. > Salisha I never said they were advocated to relieve nausea or vomiting. They are tapes of nature sounds, Celtic music, soothing classical music and the like. They are advocated to be enjoyable and soothing. How would your tapes differ from these? You stated that your tapes would be sounds and music. Why would they be different from over the counter music. In other words, why would your prescription be better than the over the counter, run of the mill soothing music out there? Salisha http://www.thewellnesscommunity.org/programs/frankly/treatment/connecting/integr ating.htm http://www.thewellnesscommunity.org/programs/frankly/treatment/connecting/comple mentary.htm I am a member of the wellness community part of there program is to educate people and provide support for people with cancer. Listening to calm tapes can be of some benefit as part of a program Here is a free link http://www.thewellnesscommunity.org/virtual_WC/mind.htm enjoy ! The Wellness Community is a FREE organization that has published studes here in the US and they don't prescribe medical inrformation. THe Wellness Communitiy was intially suggested to me by a Doctor. And most cancer centers have libraries where you can get similare tapes for FREE!!!!! WR- sorry to hear about your mom sounds like see got crappy care. I am so glad my oncologist prescribed the $50 pills ( kytril) and decadron - I worked through most of my chemotherapy....I am also glad to use the wellness community. which is FREE!!!! WR to me it sounds like a sales pitch to me....no thank you, although you idea has merit it is not new or earthshaking ...perhaps underultized but here in the US and I bet Canada these resources are available FREE and with no hidden agendas or scare tactics. Alex.. Here is the problem... the tapes you mention as Free... have not been cleared by the FDA. Yes, I know that sounds ridiculous but that is exactly my point in this discussion... The FDA would label the tapes you mention as free...as medical devices and they would need to have a full study and be cleared by the FDA. After all that occurs do you think those same tapes would still be free ? If you would like I will happily provide the definition of a medical device... but in short. My findings through my research for our appeal -- amounts to definition of a medical device affecting a product used by many people across North America... the Alarm Clock. And please if you find the side effects scary.... I am just stating facts - please remember that. You can confirm the side effects yourself. If they are scary --- who is responsible for the safety decision of drugs before they go to market -- the FDA ? Why is the FDA allowing the American public to take drugs with so many side effects... however have such a "stringent" defintion of a medical device that anything that is intended to affect a bodily function including an Alarm Clock and sound and music becomes a medical device. Do you see the FDA taking action towards classifying the Alarm Clock as a medical device ? Wayne http://www.thewellnesscommunity.org/programs/frankly/treatment/connecting/in tegrating.htm http://www.thewellnesscommunity.org/programs/frankly/treatment/connecting/co mplementary.htm > I am a member of the wellness community part of there program is to educate > people and provide support for people with cancer. [quoted text clipped - 17 lines] > here in the US and I bet Canada these resources are available FREE and with > no hidden agendas or scare tactics. Sounds like an insurance scam to me. If it truly is beneficial, then people may use it regardless of what the FDA classifies it as... however, if the FDA classifies it as a medical device, then you can bill insurance companies for it and have doctors prescribe it and so on.... Not to mention what it would do for your advertising... instead of your personal claim that some results may be obtained, you would have the full weight of the FDA supporting your stuff as being legitimate. So... thank you, no - either your tapes become approved on their own merit or the FDA continues to protect us from scams. On another note - I have a nifty black box that makes light and sound to basically shut out distraction and (in theory) help put you into certain programmable mental states. I have found that in practice it does a great job of distracting you from your worries of the day and the wife's snoring so you can get to sleep, but then you wake up because you are sleeping with glasses and headphones on. The benefit of these tones over music is that your mind does not process following along with the music or interpreting the content. >Alex.. > [quoted text clipped - 57 lines] >with >> no hidden agendas or scare tactics. You are fairly lucky you have not been attacked for a post that looks like you are selling something. I'm sure if you request it someone will send you the rules of engagement for this forum. >To All: > [quoted text clipped - 35 lines] >> Lance >> ***** Someday in the distant future, archeologists digging thru the ruins of alt.support.cancer will discover that "W.R" <wrowe@onewest.net> had this to say on 24 Jan 2004: > Okay folks, > [quoted text clipped - 19 lines] > use -- would you personally want to > take these drugs with those side effects mentioned ? I can and I have. Kytril has been phenomonally successful for me, without noticable side effects. my attention spam isnt what it used to be since I started chemo. long posts tend to lose my attention. I got this far and stopped. Maybe I'll read the rest another time, but I doubt it  Signatureofficially recognized SPEWS puppet ISO certification and everything just waiting for the union card I feel so honored > Okay folks, > [quoted text clipped - 57 lines] > > Wayne Rowe I took a river of Decadron for a year of chemotherapy with no problems Now I am doing great ! > Okay folks, > [quoted text clipped - 57 lines] > > Wayne Rowe Well Steph hasn't said it so I will Bollocks MIKE |
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