CSN Login
Members Online: 1

You are here

Thinking..thinking...and THINKING

mojogirl67's picture
mojogirl67
Posts: 247
Joined: Oct 2018

So many of us here with so many decisions to make. I know each one of us has different lives..different stories..different fears and hopes. This massive surgery I just had left me more aware of so many things. As many of you know, I lost my husband to this god awful disease three years ago and now I have the exact same diagnosis. What gives? So much suffering and pain but still no answers or cures? We can put men in space but millions of studies and scientists can't derail the cancer train? I think not. In a perfect world, the medical industry wouldn't be run by big insurance, government, and pharmecutical drug lords, but it is. I have to make a decision in just a few weeks, barely healed from my surgery as to do mop-up chemo or not. I have spent countless hours during my husband's journey and my own readling EVERY study and anything to shed light on a solid answer. You have a few who do mop-up chemo and the cancer doesn't come back. Was it the chemo or their own body and life style? You have many, many, and many more who do it and it makes no difference. They go thru the treatments and it never leaves. I know this is a touchy subject for most. I am believer in the power of the body to heal and repairing itself, given the right stuff. There are natural treatments that boost your immune system without making you feel like crap and destroying other systems in your body. It just makes no sense that now that I have cut out the cancer in my body that I would want to come back and put the chemo chemicals inside a compromised liver just regenerating and an intestinal tract learning to work again. I've done the rounds of Folfox and Avastin so I know what the side effects are. This week in the hospital I noticed my "thinning' hair from the Folfox was not growing much and coming out so the chemo is still in my body doing its' thing. I never thought I would do chemo after going thru it with my husband, but I did. My chemo sessions didn't shrink my tumors much but my CEA level seemed to drop while on it. I haven't decided if I will do the mop-up chemo but I am seriously leaning toward natural therapy to heal my body. I am just as scared as anyone on this board but the thought of feeling sick and just not "myself" weighs on my mind. Quality over quanity matters to me. I am just starting to feel pretty decent today after my surgery. The past week or so has been the worst with so much pain and all of the medications as well as not being able to eat or move. I NEVER want to deal with this kind of pain again. I suppose the chemo is a role of the dice and only I can decide what to do. I just get pissed when I think about it. It seems they line us up like cows at a trough to give us the "standard" treatment and wish us luck on the turnout. We are all different in our make-up and lives so "one size does not fit all". I hate feelig helpless and being at the mercy of someone who looks at me as a number on a graph to see how I'm doing. Okay..guess I have gotten my morning rant out of my system. So many of you go thru so much every day that I almost feel sheepish for complaining. Hopefully the light will shine at the end of the tunnel soon...it's been a long week. I still wish each and every one of you love, light and laughter every day followed with a genuine huge hug!..M

 

Her_big_sister's picture
Her_big_sister
Posts: 12
Joined: Feb 2017

Thank you so much for posting this. 

Christy76's picture
Christy76
Posts: 27
Joined: Feb 2019

It is a very difficult journey and I can understand the rant. I feel like you do on some things. Like we are the medical industries dream come true. Patiens who are perpetually sick and can be charged fees without end. I wish you the best of luck with whatever choice you make concerning mop up chemo. Stay strong :)

SandiaBuddy's picture
SandiaBuddy
Posts: 878
Joined: Apr 2017

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.

mojogirl67's picture
mojogirl67
Posts: 247
Joined: Oct 2018

There are so many unknown residual side effects of chemo that show up down the road which in turn leads to additional health issues. I appreciate your honesty and input so much. I wll keep researching and follow my soul on this one. You are so right...we are all unique. All the best in your continued health..hugs, M

SandiaBuddy's picture
SandiaBuddy
Posts: 878
Joined: Apr 2017

It is funny, I initially agreed to do a three month course of capecitabine.  My oncologist talked me into doing an extra month.  I agreed to do it, but if I had quit at three months, it never would have caused the heart problems.  They occurred four days from the end of the fourth month.  If I had followed my intuition and initial plan, I likely would have been fine.

Diane_K's picture
Diane_K
Posts: 49
Joined: Jan 2019

Try not to use your husband's experience to influence your decision.  I know you are scarred by seeing what your husband went through.  I believe our lifestyle choices can help our bodies fight cancer.  Diet, exercise, supplements, stress reduction, animal therapy, fresh air, sunlight and your beautiful mountain home can all help you overcome cancer.  I my case I used all of the these things to strengthen my body but also went on chemo twice for a total of 12 months.  I felt if the chemo was going to give me a better chance of killing my cancer, even if it was a small chance, then I was going to give it a try.  During my second rounds of chemo I began to use these lifestyle changes very seriously and found that the side effects from the chemo were much less.  Exercise and fresh air in particular made me feel almost normal.

Best wishes with whatever decision you make.  We are all unique and our bodies respond differently.

mojogirl67's picture
mojogirl67
Posts: 247
Joined: Oct 2018

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

feckcancer
Posts: 90
Joined: Jun 2018

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

Kzzararat
Posts: 6
Joined: Jun 2018

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.

feckcancer
Posts: 90
Joined: Jun 2018

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.

 

 

 

 

 

 

 

myAZmountain
Posts: 258
Joined: Apr 2018

I hear you MojoI did 9 rounds of Folfox with Avastin compounded by having 2 ports get stitch abcesses requiring 3 insertions --because the "Mayo" trained IR doc did not believe it could be a reaction to dissovable stitches. So my chemo was interrupted 3 times--each time after 3 rounds I had a some chemo free weeks in between ports where i started to almost feel human again and nothing new grew--then I got a huge blood clot around the 3rd port after 9 rounds and I said "enough" .  I still have one tumor left in Right lobe per scan last month that is down to very small and part calcified the other 6-8 small tumors originally in lungs are gone. I consulted with another Oncologist about Avastin-which the FDA pulled for breast cancr patients FYI-he said it prolongs life for maybe a few months and that stuff was about to make me stroke out-heart palpitaions and BP 170/110.  Funny how the other chemo for life is essentially oral 5FU--drug that was patented in 1957!! Where has all the money raised for cancer research gone if  first line treatment is still 5FU? So I feel blessed my primary tumor in ascending colon and cecum were surgically removed and resected laparascopically almost a year ago, as well as a 4 cm mass on the omentum, got clean margins everywhere and no lymph nodes involved. All scans clean from abdomen and only thing left is one pesky turd in lung--think I can live with that, just keep vigilant about diet and exercise and enjoy each and every day. I have read some great books lately, I really like the one by Dr. Block.  We all have to decide what is best for us individually , we know our bodies and hearts better than anyone, and we must be at peace with what time we have left is my feeling.NOt doing anymore chemo is my choice .

manapart's picture
manapart
Posts: 67
Joined: Feb 2019

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

Annabelle41415's picture
Annabelle41415
Posts: 6184
Joined: Feb 2009

It's a terrible situation to be in and no one wants to be there but it's all a personal choice.  Some choose "not to do" treatment and die or live and others decide "to do" treatment and die or live.  I'm a Christian so prayer was important to me to help me make my decision along with my family.  It's a personal choice and one that you are going to have to live with so it's a very hard decision to make, that's for sure.  Hoping that you can find some peace in your decision and wishing you the best whatever it is. 

Kim

Butt's picture
Butt
Posts: 299
Joined: May 2018

I do not believe that when it comes to cancer herbal supplements can fix the issue. There are many people who have a successful surgery, chemo but attribute their  success to drinking carrot or celery juice and some supplements. I personally knew folks who didn’t t want chemo due to its side effects but decided to change their life style, eat only organic, do juicing, herbal supplements in some cases go to Mexico for alternative treatments.They pardon passed rather promrly because their activities could not cure or control cancer.Butt. 

Lovekitties's picture
Lovekitties
Posts: 3327
Joined: Jan 2010

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

 

manapart's picture
manapart
Posts: 67
Joined: Feb 2019

there is no natural cure. You can blast yourself with supplements and vitamins, have a strict diet and deprive cancer of the blood supply it needs to grow. But it cant be killed or destroyed by anything other than the same thing that kills healthy cells, and thats chemo and radiation. That the paradox of it all. 

beaumontdave's picture
beaumontdave
Posts: 993
Joined: Aug 2013

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's picture
mojogirl67
Posts: 247
Joined: Oct 2018

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

manapart's picture
manapart
Posts: 67
Joined: Feb 2019

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. 

SandiaBuddy's picture
SandiaBuddy
Posts: 878
Joined: Apr 2017

The profit motives of the health care industry opens up a can of worms, especially for those who feel they have benefited and survived from conventional therapy.  There are some old threads discussing the profit motives of chemo--and to this day I wonder if profit leads doctors to recommend a port and 5FU, versus capecitabine and a bi-weekly infusion of oxi (which has been demonstrated to be marginally more effective. . .).  Certainly, there is very little U.S. research on therapies that do not lead to significant profit.

Melanie67's picture
Melanie67
Posts: 10
Joined: Jan 2019

Hi Mojo, Glad to hear that your surgery went well.  I must say that I have had some of the same thoughts regarding chemo.  I cut my "mop up" chemo short as I felt it was just doing too much damage to my body.  That being said, I have three small lung nodules that will probably need to be addressed this summer and I know that chemo will be suggested, and I will probably agree to a limited amount.  In the meantime I have changed my diet (I rarely eat animal products), take supplements (vitamins and boswellia), and 160 mg of aspirin.  The research regarding aspirin is very interesting.  My oncologist recommended 81 mg, but I read numerous studies which looked at anywhere between 81 mg and 365 mg and I made the decision to go with 160 mg.  In the end, it is an individual choice and I know you will make the one that is right for you.

Melanie

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

I also looked at as much information as possible when trying to make a decision whether or not to do mop up chemo. I couldn't find anything definitive. Mine had to be put off due to complications after surgery and that makes it less effective as well. But I chose to go for it because if the cancer came back I'd have kicked myself for not doing it. I did it, Folfox, and it almost killed me. I was in the hospital for 4 months. I won't bore you with the details and many people on here know my story. But my point is that my cancer returned just over a year later, or spread or whatever. If I'd refused the chemo I'd be angry with myself and blame myself. There'd have been no way to know that it would come back anyway. Or maybe it would have come back sooner. Or maybe if I'd had the chemo within the time frame of when I was supposed to or been able to finish the treatments it wouldn't have. But how could I have known?

The latest findings are that over 75% of cancer cases have no discernable cause. So there's no black and white or definitive answers. How frustrating is that!

And I'm not at all a believer in 'big pharma' having the cure but not producing it for their own financial gains. People all over the world are trying to find the cure. It would take the complicity of thousands of people to not reveal it. Most developed countries have public medical coverage, how would that help the government to keep paying to help people with cancer for their treatments? Different cancers require different treatments and even within the same cancer category most people have different responses to treatments. Losing hair to colon cancer chemo, not very often. Xeloda being effective? It did nothing for me but has worked for other people. The immunotherapy chemo I'm on now? It doesn't work for everyone they tested my tumour to see if it would be effective for it and it was.

Basically, almost every cancer requires a different treatment and within that cancer category there will be different treatments. Raising your immune system helps your body but doesn't kill cancer cells. The body just doesn't recognise cancer as something it needs to fight. Not eating sugar won't help. Besides being almost impossible, your healthy cells need it to survive. Many of us know of a past member on here who decided to forgo chemo and just use CTM (Chinese traditional medicine). He's not with us any longer. Very nice, knowledgible man.  As mentioned, people go to mexico for treatment. The only two people I know of who did that are both gone, one actually died there.

You can't eat right to get rid of it but eating right will help with strength and that's important. Exercise is supposed to help. Mindfullness as well because stress is bad for it. But can you do natural things to get it to go? Not likely at all.

I've predicted on here that the cure will involve introducing a bacteria or virus that will alert the body to the presence of the cancer so it will fight it. I think that's how some people become NED for seemingly no reason. It's just a confusing ailment. They've found prehistoric skeletons showng cancer in the leg or foot. What the heck? But eventually they will find something and I want to see it happen. There have been many success with mice but they don't transfer to humans when they test it. And they pretty much only use late stage patients for studies because they have nothing to lose, so how does that effect findings?

Jan 

Butt's picture
Butt
Posts: 299
Joined: May 2018

I know that a Sloan Kettering protocol is to do a mop up chemo. Butt.

Subscribe to Comments for "Thinking..thinking...and THINKING"