Thinking..thinking...and THINKING

Thank you so much for posting this. 

It seems like the majority opinion on this board is to try chemo and see what happens.  I had that hard choice to make and I started chemo, but quickly eliminated the oxiliplatin and took a reduced course of capecitabine.  The capecitabine ended up causing heart problems.  If I had it to do over again, I would skip the chemo.  It was only supposed to give me a 10% gain in survival chances, and for me in retrospect, it was not worth it.  However, everyone's situation is unique.  I wish you the best of luck with these tough decisions.

There is one thing you may not know.  When your hair grows back it will be curly.  Sounds trivial but it was a little bright gift after chemo.

Hang in there.  I had what sounds like the same treatment plan 2 years ago and I am doing well.  It was tough like you desribe but after you heal from the surgery it will get better.  Rest and eat what you can, peanut butter and jelly were my go to's.  Go for short walks outside, fresh air helps the body.  Laugh with friends.

Hi. so pleased your surgery is over and done with and you are heading in the direction of starting to heal.

While I didn't have your type of cancer I did go through 'the system' here in New Zealand which has a very different health system than USA .

There is no charge for us with cancer here . everything is free except some medications which cost NZ$5 from a pharmacy (eg: loperamide) but anything prescribed while in in hospital by doctors is free (chemo etc). We also  have a 'sickness benefit' that is money paid to us to live by the NZ government to cover our living costs while we are sick .Not a huge amount but enough to cover costs until we are well again. We do have private hospitals and just recently opened our first private cancer treatment centre where I live but some of the same oncologists that work in our public hospital work in the private ones and the hospitals work with each other. ( eg. my oncologist wanted me to have a PET scan. they only do them at the private hospital . he asked public hospital to pay for private hospital to do it. they agreed). I will be followed up for 5 years in the public health system seeing both a surgeon and radiation oncologist , (even though I didn't have surgery) plus I had a medical oncologist when in treatment. they all work together. Doctors don't get sued. I talk to/ask my oncologists freely about complimentary care . (eg. asked my oncologist about vit C. he said no because some studies are showing vit c can cure tumour to well in radiation so not to take while having radiation ) .I love my doctors. I realise I am very blessed here, and while the NZ health system is not perfect the way it is does take away the burden of worrying about $$$$ and means i know my treatment plan is best for my health.

Because of this if my doctors told me to do mop up chemo I would. I do as I am told . I also do everything I can to try to stop my cancer coming back now I am NED. That includes stopping smoking (hardest, I was such an addict), not eating much unhealthy/processed food, continuing to not eat red meat, adding tumeric to my cooking, cutting down on alcohol, supplements of fish oil, iron, vit b, tumeric & magnesium, x2 courses chinese medicine (as recomended by acupunturist see evergreen link below) , going to acupunture , going to chanting, avoiding toxic people and situations. If it was legal here I would also take CBD oil. I had my 3 year check up last week and asked the doctor if there was anything else he recomended. He said no. I volunteer part time at out local cancer society as a thank you and know our oncologists main goal is to help people with cancer not $$$$$. I realise I should have been doing this before i had cancer. having been given a 2nd chance of a healthy life I have taken it and changed my lifestyle as a thank you and as a mark of respect to our doctors and our health system and for myself. I don't know if my cancer will come back . But anything I can change/fix/do to try to stop it coming back I will do and anything i did in my past that contributed to me getting cancer i have stopped. 

Here are some links that may be interesting to you from this side of the world. 

https://gicancer.org.au/agitg/

http://gmri.org.nz/cms/

http://evergreenherb.co.nz/

I live by the beach and often think of you and send a prayer up when i go for walks along the coast. I am not a super religous person but like the following about prayer from the book the Prophet by Kahlil Gibran :

You pray in your distress and in your need; would that you might pray also in the fullness of your joy and in your days of abundance.

For what is prayer but the expansion of yourself into the living ether?
And if it is for your comfort to pour your darkness into space, it is also for your delight to pour forth the dawning of your heart.
And if you cannot but weep when your soul summons you to prayer, she should spur you again and yet again, though weeping, until you shall come laughing.
When you pray you rise to meet in the air those who are praying at that very hour, and whom save in prayer you may not meet.

I felt I was the only one. It really is a very difficult issue to decide. 

mojogirl67 said:

I Use Every Experience To Influence My Decisions

I wish I could sit here and say that chemo did more good than harm but I simply can't for myself. Having this port in my chest and being attached to a pump and schedule of chemicals just goes against everything in me.I've learned to never say never. I will pull it all together and figure it out in a few weeks. Thanks for the encouragement and input. Hugs, M

what you wrote reminded me of my headspace when i had to give up smoking cigarettes. (4 months before) . replace chemo with cigarettes and that is exactly what i thought. yet i persisted and here i am 3 years later and as much as i hated doing it i had to to keep me alive. all other health choices came from a need to stop cigarette cravings leading to a healthier lifestyle which is i hope going to keep me healthy. Cravings are a price I pay for a healthy life. I guess you could say the same about the effects of Chemo , radiation & surgery. i don't know if my stopping smoking is the reason/contributed to/helped i am NED today. same with my chemo or radiation. always a price to pay. went for a fantastic walk on beach and sent you prayers. x

If only there were a way to know just what gains there were from chemo vs the cost to our overall health and well being.

While I agree that the costs of fighting cancer are astonomical, I don't believe it is all pharmas/doctors that control this.  It is cancer that causes it.  It mutates, is never exactly the same for any two people, just like DNA, therefore it is impossible to be sure of a cure when it is present.  Research for a cure causes less for prevention.  I know that any number of things have been linked to the cause (cigs, pesticides, asbestos, etc.) but even those things don't cause every person exposed to get cancer.  Until we can find a way to prevent cancer from begining in every body, we will have to continue to try to cure or slow existing cancer.

As for your choices, the one piece of advice is no matter which you select, you are certain that you will never look back and second guess it.  You are doing the right thing by weighing your feelings and circumstances to make the choice.  There is an unknown outcome for each choice.  There is no right or wrong choice, just the one you can mentally and emotionally live with.

Wishing you the best.

Hugs,

Marie who loves kitties

First, I'm glad you're on the healing side of things now, and hearing you be focused and sharp is music to my, eyes? LOL. Secondly, I'm sure you'll make the right choices in your treatment. Folfox did nothing for me, according to the onc, and it certainly messed with my body, though it went away eventually. Given all that, I still see the problem of treatments as one more of perception than facts when it comes to chemicals versus natural treatments. Everything is chemical compounds and naturally occuring ones can kill you as quick as any lab created ones. The body needs metal minerals from iron to zinc in specifics amounts and too much or too little of any element can hurt you. The body clearly isn't a fan of platinum.  When folks talk about natural, herbal, or traditional treatments, people are perceiving them as gentler, safer, more benevolent ways to combat a problem. Lab based compounds are considered harsh, punishing, and less long-term tested, things cooked up by people in a hurry to make some money. A lot of that is valid, at times, but the generalizing of that perception has also cost a lot of frightened people their lives, or an extension of time they might have had. I don't think that's you at all, but I have read a lot of desperate, magical thinking here about things that clearly have no science to them, alkyline treatments come to mind, but you can't really respond to someone's desperate hopes by poopooing them. I never had any further mop-up chemo, and when I asked, the doctor said that they'd already given it their best shot, so it wasn't an issue for me to decide. You desire to optimize your chances and QOL by doing the right things, and I understand completely. One day it will all be genetically designed immunotherapies for each individual, and cures or regular custom treatments all around but until then, this assembly-line standard is infuriating, and a hit and miss game of harsh choices, do what's best for you, and try to be at peace with your choices..........................................DAVE

mojogirl67 said:

Thank you my friend...

Thank you for weighing in on my post. You are just one example of many..Folfox did nothing for you minus the exception of leaving you with side effects you didn't want or need. I realize everything is a chemical composition and that for every action, there is a reaction. I, like you, look at a lot of the scientific studies and findings but I am also aware more than ever that we are so much more than that. I also believe in a natural rythm of life that we humans have screwed up royally based on greed and social mania that spreads like wildfire. I think there is a switch for each of us to reset that natural balance even in the helter skelter world we are living in. We are all individual "snowflakes" and respond differently. For just as many stories that you read of chemo "curing" someone, a very similar individual treated with the same identical protocol does not live. So...no, chemo is not the only thing to treat/cure cancer. Common sense and natural rythm and body response are the gifts given to me. Those things are just not screaming "do more chemo" to me at this point. I never thought I woud do it to start with after taking care of my husband thru his own journey. I did try it and my thoughts about it have not changed. My frustration lies in others who will comment and say no one was cured naturally or nothing but chemo works...I call BS. Mushroom therapy, Misletoe therapy and so many countless others have PROVEN positive results that warrant more studies but BIG Pharmecutical will sweep it up. It costs big bucks and strong backing for clinical trials and when you have the big chemo guns shooting it all down, it is tightly controlled. I will not be a cow at a trough waiting to be injected and fed to hope for the best. I will continue to explore and research and I don't believe chemo is the only way. I respect that it is an "individual" decision and just wish others would realize that as well. Okay..time for a rest. Regardless the thoughts here on this board, none of us want to be here but I appreciate all of you and hope for peace, light and love to light the way for us all..Hugs, M

I feel whatever decision you make is going to be one that takes courage. And that is something I dont think you lack at all. I have chosen to commit to 1 or 2 cycles of chemo, on my terms, tailored to my specific needs and tolerance. And one of those is not taking Folfox which I heard is just generally nasty to the body or Xeloda which causes long term neuropathy. I also am going to request oral form of treatment and a low dose regiment indefinitely if need be. Combined with diet, vitamins and supplements I can just hope for the best, and hope I can maintain at least some level of decent quality of life and hope it works. And maybe if I can be approved for medicaid I can switch to immunotherapy. Cancer is about as insidious as it gets. Your body doesnt recognize it as something bad so it doesnt attack it. I do sometimes wonder why doctors are sooooo cynical about suggesting anything naturally based. Even things that have been tested, studied, trialed, and proven to at least prevent or slow the growth of cancer to a certain percent. I think if there was a aggressive way to fight cancer withoutu chemo, radiation and surgery it would be widely known regardless of what Pharmecutical companies sweep under the rug. The clinical trial would simply be real people trying these methods and thriving and getting positive results and sharing that information. It would spread like wildfire. 

You have my best wishes and I hope you find peace in your decision. Take care mojo.