Alternative Treatments

mwellsg
mwellsg Member Posts: 66
edited March 2014 in Head and Neck Cancer #1
Looking for some candid feedback.

I am 61. Healthy and strong. Except, I have stage 4 squamous cell cancer with a tumor at the base of my tongue.

Docs are gearing up for chemo and 6 weeks of radiation. Is this the way to go? It seems wrong to me. Kill my good cells to kill the cancer and hope I survive it. As others who have the same thing I do will read this, I am not going to state the expected survival rates, but if you've looked you know.

So my issue is quality of life. I want to enjoy my life. I play guitar, am a fairly good photographer, have a great wife, 5 great kids and 5 great grandkids. Do I want them to radiate the hell out of me, make me weak and sick with little chance - or do i want to fight this with nutrition, immune system building drugs, alternative, holistic approaches. Keep the healthy parts of my body strong while i try to kick the cancer cells out? Maybe get 7, 8 even 10 good years on my terms?

I can't decide and it's a big decision. Ideas? If anyone out there is using an alternative approach, I'd love to get in a dialog with you.
Mike

Comments

  • DJG1
    DJG1 Member Posts: 121
    #2
    Alternative or Mainstream
    Mike,
    This is a topic you will get mostly mainstream medicine, rad, chemo, surgery, some or all of them from most of the folks here. I was diagnosed with stage 3, right tonsil cancer with lymp node spread in april of 2010. Long story short, I had my tonsils removed, along with a partial neck dessction, and 33 rad treatments. I opted out of chemo, against most dr suggestion. We never know what is right or wrong. I feel the surgery was right, not so sure about the rads, although many here and my family think it saved my life or bought some more time. We will never know. The fact was that the lymp nodes was not noticable when diagnosed and 4 months later it had grown to the size of a lemon. I am constantly reading about alternative medicine and do feel there is a lot to offer there. It is a individual choice and one only you have to live with or without. The radiation can be burtal, but it is doable. Many here have had surgery, chemo, rad, and living proof that it can work. I have read many good books on Alternative medicine and can share with you some of the titles if you are interested. Good Luck with what ever choice you make. Feel free to PM if you like.
    Debbie
  • DrMary
    DrMary Member Posts: 531 Member
    #3
    We have met the enemy
    and they are us.

    Normally, I keep my darn mouf shut and let folks do their own thing. However, you asked for candid.

    Here's the straight dope, from a previous AP Bio teacher, current chemistry teacher and current cancer caregiver:

    Cancer cells are YOUR cells. They are not viruses or foreign bacteria, which is what a strengthened immune system will fight. They are your own cells, with a few essential mutations in their DNA. They lack the "I'm all by myself and so I should not grow" instruction. They lack the "I've been around a long time and so I should die" instruction. They lack the "There are too many of us around here, so I shouldn't grow" instruction.

    Actually, they might still have those in their DNA, but they are blocked. Some day, we will find a way to restart or reinsert those instructions in cancer cells and we won't need chemo and radiation but that day is not today or even tomorrow.

    Hear this from someone who would have used another path if it were viable: We eat organic and local. I have a cousin who researches natural remedies. I've lost loved ones to cancer. I have both studied and taught pharmacology, including herbal drugs. My kids call me the "fiber queen." We are extremely healthy people who hardly ever get sick.

    We chose radiation and chemo because they target the one difference between "normal" cells and cancer cells - they go after rapidly growing cells and other cells that fit the description of cancer cells. This also kills healthy cells. We depended on good nutrition and the fact that my husband is healthier than most oxes to make sure he lived while cancer cells died.

    It's your choice, but think hard. I saw Doug's doctors suffer when we were in the depths of the heart of darkness - they genuinely like him and it tore them up to see him suffer. If there were a reasonable alternative, they would have suggested it - they are not in this for the money.

    I have said enough. Good luck with whatever path you choose.
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #4
    I have to say, I concurr
    I have to say, I concurr with Dr. Mary. I had a couple of very close people to me telling me that I should not do conventional meds and just change my diet (which was healthy and fine the way it was) and use my immune system to fight it. Trust me if there was any way around radiation I would have done it. Having another illness chemo was not an option and radiation was incredibly risky. I understand what you mean about quality of life believe you me. I chose to fight this time with what I could do. For a while I was miserable and thought I had made the wrong choice. I had my peg tube in for 18 months and couldn't eat anything. I went well over a year as a seriously hurting pup. I have since turned a bit of a corner. It's still not perfect, and I will never be the same as I was, but I can say now, after 20 months - it's ok. I can live with this and hopefully I have slayed the beast.

    Yes, before radiation I did work on building my immune system so that during treatment some other nasty cold or crap didn't take me down.
    Choice is yours. If anything were to happen again to me they said I would have no choice but to do the Erbitux. I'm not sure I would.

    To be honest, the end of stage four cancer isn't pretty if you don't do treatment, and I would rather go out fighting, I think. But I have always been a scrappy little NYC girl.

    This isn't a cold. This isn't the flu. I wouldn't screw around. I found a swollen lymph node in October 'o9 And by December I had a tumor the size of a large lemon. Neck dissection removing my salivary gland, 23 lymph nodes with 3 positive. And that thing was attached to my jaw bone....

    I wish you well

    Dawn
  • Jimbo55
    Jimbo55 Member Posts: 590 Member
    #5
    Totally agree with Dr Mary & Sweetblood
    BOT stage 4 here, diagnosed in May and completed treatment in July. Treatment consisted of 35 rads and 3 Cistplatiin stretched over 7 weeks. Definitely treatment was rough, but I came through it pretty well. 6 months out and I am feeling good, really good. For me there was no quality of life issue regarding the chemo/rad treatment. I still have some lingering issues, but they are for the most part relatively minor things: some dry mouth and still don't have 100% taste back yet, but it is getting closer. Having said that, everybody reacts to the treatment in their own way, some better, others worse.

    C is nothing to play around with and I just don't see much convincing evidence that alternative treatments have a successful track record. Cheers

    Jimbo
  • kingcole42005
    kingcole42005 Member Posts: 178
    #6
    DrMary said:

    We have met the enemy
    and they are us.

    Normally, I keep my darn mouf shut and let folks do their own thing. However, you asked for candid.

    Here's the straight dope, from a previous AP Bio teacher, current chemistry teacher and current cancer caregiver:

    Cancer cells are YOUR cells. They are not viruses or foreign bacteria, which is what a strengthened immune system will fight. They are your own cells, with a few essential mutations in their DNA. They lack the "I'm all by myself and so I should not grow" instruction. They lack the "I've been around a long time and so I should die" instruction. They lack the "There are too many of us around here, so I shouldn't grow" instruction.

    Actually, they might still have those in their DNA, but they are blocked. Some day, we will find a way to restart or reinsert those instructions in cancer cells and we won't need chemo and radiation but that day is not today or even tomorrow.

    Hear this from someone who would have used another path if it were viable: We eat organic and local. I have a cousin who researches natural remedies. I've lost loved ones to cancer. I have both studied and taught pharmacology, including herbal drugs. My kids call me the "fiber queen." We are extremely healthy people who hardly ever get sick.

    We chose radiation and chemo because they target the one difference between "normal" cells and cancer cells - they go after rapidly growing cells and other cells that fit the description of cancer cells. This also kills healthy cells. We depended on good nutrition and the fact that my husband is healthier than most oxes to make sure he lived while cancer cells died.

    It's your choice, but think hard. I saw Doug's doctors suffer when we were in the depths of the heart of darkness - they genuinely like him and it tore them up to see him suffer. If there were a reasonable alternative, they would have suggested it - they are not in this for the money.

    I have said enough. Good luck with whatever path you choose.

    Thank you Dr. Mary,
    Thank you Dr. Mary, I actually learned something from you my own doctors didn't tell me. Not their fault though you got to ask pretty specific questions and I wasn't in the frame of mind to be specific. This experience of having cancer has taught me that I have to take better care of myself and my family through diet and exercise. My kids are totally agreeable to eating organic, cutting down or virtually stopping the consumption of animal products. I want to live a long and healthy life and I know these are key to achieving that goal. I just completed radiation a couple of weeks ago and am still on pain meds etc., so I'm still recovering, but I am looking forward to starting this new life with my new perspective. So I agree with you totally a combination of modern & holistic medicine is the way to go. Also I do believe in meditation, massage, accupuncture, cupping, aromatherapy, those types of therapies as they have been beneficial for me. Shelly
  • Hal61
    Hal61 Member Posts: 655
    #7
    61 too
    Hey Mike, I was your age about a year back when I got my diagnosis. SCC with primary at base of tongue, mets to lymph nodes on left side. I can't blame you for thinking of alternatives after reading some of the posts here. How treatment might treat you is all over the map. Important to remember though, that comments here are tilted a bit to the dark side. That's because this is where people come to get help, to post problems that need answers, and to vent.

    Your idea of getting 7, 8, or even 10 good years on your own terms is a good idea. If someone had given me that choice when I began, I would definitely have considered it. As Sweet mentioned though, it doesn't normally work like that, even with a respectable holistic regimen. I had just began to have a metallic taste in my mouth when I was diagnosed, and my taste, even before the radiation, was slipping away. Cancer won't do it on your terms, that's the problem, and it has its own time table.

    Eight months from radiation and chemo, and six months from a partial neck dissection, I'm not free of treatment symptoms. But I'm doing pretty good, and can play the guitar, and generally fiddle around as before. Some, like Jimbo and lots of others who don't post here, are mainly free of treatment remnants.

    If you can find something that can stop cancer in its tracks like chemo, or blast it to hell like radiation, then by all means try it. I just don't know of any alternative treatment like that.

    best, Hal
  • rozaroo
    rozaroo Member Posts: 665
    #8
    Hal61 said:

    61 too
    Hey Mike, I was your age about a year back when I got my diagnosis. SCC with primary at base of tongue, mets to lymph nodes on left side. I can't blame you for thinking of alternatives after reading some of the posts here. How treatment might treat you is all over the map. Important to remember though, that comments here are tilted a bit to the dark side. That's because this is where people come to get help, to post problems that need answers, and to vent.

    Your idea of getting 7, 8, or even 10 good years on your own terms is a good idea. If someone had given me that choice when I began, I would definitely have considered it. As Sweet mentioned though, it doesn't normally work like that, even with a respectable holistic regimen. I had just began to have a metallic taste in my mouth when I was diagnosed, and my taste, even before the radiation, was slipping away. Cancer won't do it on your terms, that's the problem, and it has its own time table.

    Eight months from radiation and chemo, and six months from a partial neck dissection, I'm not free of treatment symptoms. But I'm doing pretty good, and can play the guitar, and generally fiddle around as before. Some, like Jimbo and lots of others who don't post here, are mainly free of treatment remnants.

    If you can find something that can stop cancer in its tracks like chemo, or blast it to hell like radiation, then by all means try it. I just don't know of any alternative treatment like that.

    best, Hal

    Mike
    I had stage 4 bot cancer also. Non smoker, light social drinker. Worked out ran 3 miles a day & ate healthy. I felt no sympton's with this cancer just a lump in my neck. Had no clue. My Oncologist scoped me & said take a look I freaked. What a mess! I new it would take a bomb to get it. I asked him my option's. My only choice was radiation & chemo. He mentioned head & neck cancer respond well to radiation as do a few other cancer's. The other's require surgery etc. There is no guarentee with this but it is the best option. I really don't think you will get a good nine years with a natural holistic approach. I seriously think it would be alot less & pure hell! This cancer grow's fast & I have seen it first hand as it completley closed my father in law's throat & he could no longer get nutrition in. If I were you I would seriously consider taking the treatment & then take the
    holistic approach last. Whatever you decide I wish you my best. I am a very straight forward
    type & hope I did not offend! I just feel strongly about this.
    God Bless
    Roz
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #9
    Great Health
    Like you and I mentioned it frequently during treatment...Other than having cancer, I'm in perfect health.

    To me that is the best thing going for you. It seems a large majority that don't do well during treatment alreasy have some underlying health issues, or it's taken hold and pretty advanced before being detected.

    I was 55 when I first found out I had STG III SCC Tonsil Cancer. My doctors felt that I was young enough and healthy enough that they wanted to hit it as hard as I coul handle and with everything in their arsenal.

    I agreed, I wanted what they felt was the best approach for the longest and best outcome and I never looked back.

    Would I rather have not ha to go that route, YES, am I glad that I did...Yes.

    This is just my opinion, and you need to do what you think is best for you...but technology, education and experience are the best ever in history. If you have cancer to me this is the best time ever for the best possible outcome.

    Best,
    John
  • Hondo
    Hondo Member Posts: 6,636 Member
    #10
    Hi mwellsg
    Life after Cancer treatment is still good; take that from someone who has been there three times and is still living. There are things you can do to help your body keep from getting cancer again but I suggest doing that only after you finish all your treatment and your body get to its new normal.

    Take care my friend
    Hondo
  • JUDYV5
    JUDYV5 Member Posts: 392
    #11
    DrMary said:

    We have met the enemy
    and they are us.

    Normally, I keep my darn mouf shut and let folks do their own thing. However, you asked for candid.

    Here's the straight dope, from a previous AP Bio teacher, current chemistry teacher and current cancer caregiver:

    Cancer cells are YOUR cells. They are not viruses or foreign bacteria, which is what a strengthened immune system will fight. They are your own cells, with a few essential mutations in their DNA. They lack the "I'm all by myself and so I should not grow" instruction. They lack the "I've been around a long time and so I should die" instruction. They lack the "There are too many of us around here, so I shouldn't grow" instruction.

    Actually, they might still have those in their DNA, but they are blocked. Some day, we will find a way to restart or reinsert those instructions in cancer cells and we won't need chemo and radiation but that day is not today or even tomorrow.

    Hear this from someone who would have used another path if it were viable: We eat organic and local. I have a cousin who researches natural remedies. I've lost loved ones to cancer. I have both studied and taught pharmacology, including herbal drugs. My kids call me the "fiber queen." We are extremely healthy people who hardly ever get sick.

    We chose radiation and chemo because they target the one difference between "normal" cells and cancer cells - they go after rapidly growing cells and other cells that fit the description of cancer cells. This also kills healthy cells. We depended on good nutrition and the fact that my husband is healthier than most oxes to make sure he lived while cancer cells died.

    It's your choice, but think hard. I saw Doug's doctors suffer when we were in the depths of the heart of darkness - they genuinely like him and it tore them up to see him suffer. If there were a reasonable alternative, they would have suggested it - they are not in this for the money.

    I have said enough. Good luck with whatever path you choose.

    Wow
    Dr. Mary,
    What a great post. It is information that I had known, but you stated it so eloquently.
  • adamson091654
    adamson091654 Member Posts: 16
    #12
    DrMary said:

    We have met the enemy
    and they are us.

    Normally, I keep my darn mouf shut and let folks do their own thing. However, you asked for candid.

    Here's the straight dope, from a previous AP Bio teacher, current chemistry teacher and current cancer caregiver:

    Cancer cells are YOUR cells. They are not viruses or foreign bacteria, which is what a strengthened immune system will fight. They are your own cells, with a few essential mutations in their DNA. They lack the "I'm all by myself and so I should not grow" instruction. They lack the "I've been around a long time and so I should die" instruction. They lack the "There are too many of us around here, so I shouldn't grow" instruction.

    Actually, they might still have those in their DNA, but they are blocked. Some day, we will find a way to restart or reinsert those instructions in cancer cells and we won't need chemo and radiation but that day is not today or even tomorrow.

    Hear this from someone who would have used another path if it were viable: We eat organic and local. I have a cousin who researches natural remedies. I've lost loved ones to cancer. I have both studied and taught pharmacology, including herbal drugs. My kids call me the "fiber queen." We are extremely healthy people who hardly ever get sick.

    We chose radiation and chemo because they target the one difference between "normal" cells and cancer cells - they go after rapidly growing cells and other cells that fit the description of cancer cells. This also kills healthy cells. We depended on good nutrition and the fact that my husband is healthier than most oxes to make sure he lived while cancer cells died.

    It's your choice, but think hard. I saw Doug's doctors suffer when we were in the depths of the heart of darkness - they genuinely like him and it tore them up to see him suffer. If there were a reasonable alternative, they would have suggested it - they are not in this for the money.

    I have said enough. Good luck with whatever path you choose.

    newly diagnosed w/hpv-16
    I have been diagnosed with HPV-16 cancer. I had a lump removed from my neck (attached to lymph-node) and now I am seeing the doctor for the treatment prescription (radiation and chemo.) I will be getting my treatment at the VCU Massey center in Richmond, VA. Does anyone have any experience with the new VMAT radiation device? Can anyone suggest treatment options. Can I get through the 6 1/2 weeks od chemo and radiation w/o the peg feeding tube. Thanks...
  • baronfrederick
    baronfrederick Member Posts: 2
    #13
    DJG1 said:

    Alternative or Mainstream
    Mike,
    This is a topic you will get mostly mainstream medicine, rad, chemo, surgery, some or all of them from most of the folks here. I was diagnosed with stage 3, right tonsil cancer with lymp node spread in april of 2010. Long story short, I had my tonsils removed, along with a partial neck dessction, and 33 rad treatments. I opted out of chemo, against most dr suggestion. We never know what is right or wrong. I feel the surgery was right, not so sure about the rads, although many here and my family think it saved my life or bought some more time. We will never know. The fact was that the lymp nodes was not noticable when diagnosed and 4 months later it had grown to the size of a lemon. I am constantly reading about alternative medicine and do feel there is a lot to offer there. It is a individual choice and one only you have to live with or without. The radiation can be burtal, but it is doable. Many here have had surgery, chemo, rad, and living proof that it can work. I have read many good books on Alternative medicine and can share with you some of the titles if you are interested. Good Luck with what ever choice you make. Feel free to PM if you like.
    Debbie

    your post jan 23--2011

    Hello --i just have been diagnosed with same and now face treatment decisions/ or no treatment at all.

    How are you now --5 years after your posting?

    Sorry to ask but I am anxiuos to speak to a survivor --if treatment was worth all the pain andwhich treatment to choose?

    Kind regards

    Christian-Frederick

  • baronfrederick
    baronfrederick Member Posts: 2
    #14
    DJG1 said:

    Alternative or Mainstream
    Mike,
    This is a topic you will get mostly mainstream medicine, rad, chemo, surgery, some or all of them from most of the folks here. I was diagnosed with stage 3, right tonsil cancer with lymp node spread in april of 2010. Long story short, I had my tonsils removed, along with a partial neck dessction, and 33 rad treatments. I opted out of chemo, against most dr suggestion. We never know what is right or wrong. I feel the surgery was right, not so sure about the rads, although many here and my family think it saved my life or bought some more time. We will never know. The fact was that the lymp nodes was not noticable when diagnosed and 4 months later it had grown to the size of a lemon. I am constantly reading about alternative medicine and do feel there is a lot to offer there. It is a individual choice and one only you have to live with or without. The radiation can be burtal, but it is doable. Many here have had surgery, chemo, rad, and living proof that it can work. I have read many good books on Alternative medicine and can share with you some of the titles if you are interested. Good Luck with what ever choice you make. Feel free to PM if you like.
    Debbie

    your post jan 23--2011

    Hello --i just have been diagnosed with same and now face treatment decisions/ or no treatment at all.

    How are you now --5 years after your posting?

    Sorry to ask but I am anxiuos to speak to a survivor --if treatment was worth all the pain andwhich treatment to choose?

    Kind regards

    Christian-Frederick

  • phrannie51
    phrannie51 Member Posts: 4,716
    #15
    baronfrederick said:

    your post jan 23--2011

    Hello --i just have been diagnosed with same and now face treatment decisions/ or no treatment at all.

    How are you now --5 years after your posting?

    Sorry to ask but I am anxiuos to speak to a survivor --if treatment was worth all the pain andwhich treatment to choose?

    Kind regards

    Christian-Frederick

    Christian....

    Start your own thread...this is a very old one, and chances are hardly anyone will read it.  There are many survivors of Base of the Tongue cancer on here.  So post away so they can answer you.

    p

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