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I don't want anymore chemo

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

I don't want mop up 5fu (what a name) chemo. I'm sorry if this is a long post but I feel I need to explain why and start at the beginning.

 

Last Feburary I started a Xeloda/Radiation treatment regime. They told me there "might be some irritation" toward the end. By irritation they must have meant excrutiating pain every time you need to use the the bathroom. I even ended up with blood in my urine so that hurt too, like peeing razor blades. They were not honest with me about the toll treatment would take.

 

Then on July first it was time for surgery. I had been told that four to six weeks after surgery I would be all healed up. I believed them... Upon waking up from surgery I noted that my glasses were no longer helping me. I thought it was the drugs but weeks after my sight was still bad. I finally went to see an eye doctor and was told my script had changed and on top of that I now needed bifocals. I told the surgeon and the oncologist who both told me vision changes happen when your forty-two and middle aged. Over night? I think not. I looked it up and found that it may have been the epidural they had me on to lesson the amount of pain meds. The FDA says epidurals can cause eye damage and I was connected to a machine that left me numb from the waist down for two days. Since the surgery my taste buds have changed and nothing tastes good anymore and I'm still not fully healed.

I noticed when I was released from the hospital that I didn't feel well. This feeling got worse and worse. I became short of breath eventually and on July forteenth at four in the morning I got out of the recliner I was sleeping in (as getting in to bed was impossible) to use the bathroom. As I walked back toward the recliner after using the toilet graviety got heavy, the room began to spin and I woke up ten minutes later on the living room floor. I called for my girlfriend who called 911. I was rushed to the hospital with a blood clot in an artery in my lung. I nearly died. By the end they could get no blood pressure reading and I was begging them to do something because I couldn't breathe. My face turned purple and though I know there are a lot of different interpritations as to what a near death experience is all I will say is that I had one. I was closing my eyes for the final time when the doctor rushed in, said he knew what was wrong wheeled me into some other room, cut a hole in my neck, shoved a tube down it and sprayed my lungs with blood thinners. I spent three days in ICU and another three in a regular room before being released to go home.

When I went in for surgery I was told that the flap they put on my butt after removing my colon would heal quickly. To this day it still hurts and it leaks fluid. At one point the pain got excrutiating but no one wanted to prescribe pain meds because "opioid crisis" and instead they set up an appointment with a pain center. That appointment was two weeks away. When I finally got there, there were signs on the wall stating that they did random drug testing and pill counts. I was forced to pee in a cup to test for street drugs and they said they would give me no opioids for two weeks until the results came back. Funny but every drug test I've ever taken for work came back in twenty-four to forty-eight hours. Then he prescribed Gabapentin which after researching on the net I refused to take. Thankfully the pain eaised off and I don't need pain meds, though my butt still leaks constantly.

I am still not fully healed. My stamina is still kind of crappy and thanks to the blood clot I now stick myself with Lovenox shots twice a day. My stomach is covered in bruises as a result. That hasen't stopped them from wanting to put that port in and start 5fu. They say it should go fine.... That's what they said about the radiation and about the surgery. Fool me once shame on you... How many side effects will I get or will I be really unlucky and be one of the people it kills? Also nice to know is that if I am that unlucky they will put down that I died of cancer and not from chemo. This makes me wonder just how many of us die from the chemo. When I said I didn't want the chemo they threatened me. The cancer center has been paying for a COBRA policy so I can keep my insurance and they said they will stop paying for it. They will leave a cancer patient uninsured, nice. Then they told me all the horror stories about what happens if it comes back. No need to tell me. My mother had colon cancer and it came back. I know exactly what happens.

The bottom line is I feel they have no idea what they're doing. They open up a medical journal and what ever the latest treatment is that's the one they roll with. If those journals said cancer treatement was now standing naked on a roof top I would be butt naked standing on the the roof of the hospital right now. I also think they downplay the seriousness of the chemo and it's side effects.  It's always rosey when they tell it. Treatment is cookie cutter one size fits all and there are no alternatives to try. Don't even get me started on the financial side of things either. Lots and lots of money being made by that hospital. I spend a lot of time there these days and have run into the CEO's and what not who run it. They want for nothing.

I'm fed up and I want my life back. I want to  go to the movies again and take long drives without being in pain. I want to heal up and be healthy and if that ends up shortening my life is that so bad? The chemo might not work anyway and I'm not sure if I should believe there statistics on it. 

 

 

 

 

 

 

 

Trubrit's picture
Trubrit
Posts: 4779
Joined: Jan 2013

You will NEVER get your previous life back, but I do so hope you get a life back that is better than the horror of this past year. 

You know, when I post about my radiation experience, there are some who think I am frightening people, and have asked me to stop. But it is for the unfortunate few (probably more than few) who DO expereince Hell on earth, that I post. I am sorry you didn't see my post, becasue I went through HELL during radiation, and so did you.  Of course, my experience wouldn't make it any better for you, but there really is something about being warned.  

I am going to say something really weird.  You have GOT to BELIVE that it will get better. Again, there is something about believing that can help - not always, but for some of us it works. 

5FU (I don't use profanity, but really, the FU there really does fit) might not be so bad. Obviously we can't tell you how your body is going to react, especially after such horrific side effects already experienced. 

While FOLFOX was horrible for me, I believe it was the Oxaliplatin that caused most of the issues. When I did just 5FU during radiation...... well, I guess I really don't know, so I'd best shut up. 

Don't listen to statistics. I'm supposed to be dead right now, so stuff the statistics. They play on your mind and can bring you down. 

At the end of the day, you have a very, very big decision to make.  

We are here to support you in that decision, whatever it may be.  Advise, we can, but beyond that, the ball is well and truly in your court. 

I am sure you are doing your best to heal, as far as healthy eating and as much exercise as your poor, beaten up body can manage. 

Do not ever, ever, ever, worry about the lenght of your posts.  It is your post that help us help you. 

Blessings as you move forward.   Really, life is worth it after the fight, but it may continue to be a rough ride. 

Tru

Joan M's picture
Joan M
Posts: 366
Joined: Oct 2016

That is the term they use for those who they believe will need only a few rounds of chemo.  

I understand you need a break for awhile, but I hope you decide to go through with it as you may be one of the lucky ones who end up NED in the very near future.  

Wish you the best whatever you decide.

 

SandiaBuddy's picture
SandiaBuddy
Posts: 858
Joined: Apr 2017

More than anything, I think I learned to follow my intuition in this process.  You have been through a hell that likely very few people can understand.  I do not recall if you mentioned whether there is currently any detectable cancer in your body.  If there is not, your doctors should give you very specific information about how much of a survival chance you would get from chemo.  For me, it was only a 10% gain and I wish I had followed my intuition and not done chemo.  Even if you do have active cancer, it is your choice as to whether you engage in chemo or not.  Many people choose not to do so.  How you live your life is your business and it is not a choice that a doctor or any other person can make for you.

The bribery about the COBRA insurance is likely a matter you can forestall or appeal.  First, they may not follow through on the threat.  Second, there are likely a number of avenues to obtain and maintain insurance.  If it were me, I would worry about my health before I worried about my money.

I am so sorry you face these many challenges and I hope you find moments of health and peace in the future.

Nazareth
Posts: 84
Joined: Nov 2017

if you are on mop up chemo- you are almost done- even thouhg mop up chemo only has a small % chance of helping- it's STILL a chance- and beign i nthe fight for life, it's worth every % to go as long as you possibly can- if one quits, then the cancer comes back- there's no do over- and one would be likely to regret not doing everything possible to try to beat thet disease- but if you do everythign you possibly can, and it still comes back, youcan at least know that you gave it your all- at least that is howe i looked at the situation myself- It was awful but it's all behind me now- and I'm glad i did everythign i coudl to give myself hte best possible chance at survival

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

Thanks for the advice everyone. :) Yes they are calling it mop up chemo but it goes on for six months. Maybe they're mopping up the Empire State building or something. I know people say you want every chance you can get but to me that depends on quallity of life. So far treatment has permanently damaged my vision, may have permanently damaged my taste buds, caused other long term issues and nearly killed me. If they can give me ten or twenty years but my body is so wrecked by the end of treatment that I can't leave my apartment (which I rarely do these days) then those years are not worth it. I would trade them in for ten or twenty good days where I can enjoy life. There is staying alive and then there is living. What I am doing now is not living. If there were a cure for cancer I would be first in line and I would be happy with another twenty or thirty years but not if my body is a mess and all I can do is sleep or watch TV.

SandiaBuddy's picture
SandiaBuddy
Posts: 858
Joined: Apr 2017

When I had my first full dose of chemo, I made up a formula that I would rather have one good day off chemo as opposed to ten days with chemo.  When I applied it to my life expectancy, it pretty much came out even.  Luckily, I have survived beyond the base statistic.  Everyone has to make choices.  If it is any consolation, my sense of taste changed significantly with chemo, but has come back big time to the point where I am starting to get chubby.  Some of the other side effects have disappeared, but some remain. We can't change the past, but we can make choices about the future.  I hope you feel better soon.

abrub's picture
abrub
Posts: 2088
Joined: Mar 2010

My cancer is back, and tho I swore I'd never do chemo again, if the cancer has in fact invaded my lymph nodes, then I must reconsider.  However, I will never do "chemo for life" and I am 100% on board with living a shorter, but good life rather than existing for a prolonged period of time while suffering through treatments.  Right now my quality of life is excellent.  Within a week, I'll know the next set of plans for me to consider.  They may recommend chemo, and I may opt out.  Not yet sure.  My case goes to Tumor Board tomorrow.

Holding your hand from afar, and hope that you do heal from the suffering you're experiencing, and can again take pleasure in living, rather than merely existing.

Alice

cinda
Posts: 12
Joined: Jul 2019

They want me to go on strong chemo. but my brother did his 6 months and was dead within a month after ,even got a new cancer while on it. He also got a infection. So as you said what really killed him. I say not the cancer. Though he did have cancer 27 years earlier (hogkins ) He took treatments then and had a long life so what if. It has to be a personal deceicion. I had some chemo with my radition and still got a new site of cancer. so when they ask me to do more .(I said why would I do that) Them they said maybe the new area isn't cancer even after saying it  is on the petscan.. May husband and myself are very confused. wishing you the best.. I am changing insurance in a month so putting off my decision.

 

 

 

 

 

 

 

 

 

 

 

 

Annabelle41415's picture
Annabelle41415
Posts: 6148
Joined: Feb 2009

It's such a difficult decision, but remember if you don't, you can't go back and say you wish you did.  You might or might not have problems with the mop up treatment, it's just hard to tell.  There are people that go through 12 rounds of treatment and work full time.

My 5FU brought me permanent neuropathy and I'm on gabapentine daily.  My vision changed drastically after my treatment too and my oncologist and eye doctor never heard of it changing vision, but it does.

Wishing you the best and it your decision, but it's a decision that ultimately you will have to make for yourself and you can't say later that you wish your decision was different.

Kim

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