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The most difficult decision I will ever make

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

I have pretty much 5-6 days to make a decision about my treatment going forward. I have spent many hours and days researching and speaking to many people about a variety of issues related to my specific diagnoses. Thinking and obsessiving a lot. The particular compromising challenge for me is that I am mentally ill. I tried to simplify my life to such a point where I didn't have to make major decision and avoid stressful situations and people. Because my decisions would all be skewed and influenced by a fractured mind and a flawed thought process. I suffer from Major Depression PTSD, OCD, and worse of all Panic and axniety disorder. The only medication I am able to use is clonazepam for anxiety. My depression is treatment resistent. 

I also have physical challenges. I was diagnosed with a mild for of gastroparesis, IBS-C, and tinnitus. I cant take anti depressants because it causes the tinnitus to get worse. I thought having a loud and intrusive ringing sound in your head was worse enough. I was wrong.  I also have been diabetic since a teenager. My kidney functions are low, I have bad neuropathy in my feet, and im slightly blind in one eye. I have damage to the vagus nerve which can cause a whole host of issues but probably most of all is slow motility,  painful digestion and flare ups that leave me constipated for weeks or even close to 2 months. 

Ive been taking tramadol and reglan on and off, since 2013. It baffles me noone thought to say hey maybe we should give him a CT scan or MRI. I was just told I have IBS and its nothing they could do and just take miralax, gasx and tramadol. Right now im on digestive enzymes, probitotics, and a strong laxative called Amitiza. 

I thought I was doing the right thing. Being persistent and aggressive despite not having medical insurance. Id go to the ER, wait for 9 hours, lay in a bed for another 3-4 hours waiting for a doctor, and they jus tell me the same thing and give me a script for miralax. I did get them to x ray me a few years back but everything was clear. I took several stomach emptying studies and even though they showed my stomach was slower than normal they said it was manageable. Told me to take B-12 vitamins and find a mexican pharmacy where I can purchase Cisapride. A black listed drug not approved in the US. 

I had a endoscopy/stomach biopsy a couple years ago and had Pylori bacteria and redness in my stomach walls. I cleared it up taking anti biotics. And then at age 39 I decided to... well demanded a colonoscopy. And after the test everything was and I quote "perfect." No polyps, no spots, no bacteria, it was all clear. This was about 8 months ago. Fast forward to a few weeks ago, im having the worse stomach pains ever. I know when tramadol doesn't work, something is wrong. I had to schedule 3 Doctor appointments, the first guy gave me zantac and more reglan. The 2nd guy told me to see a gastrologist, and finally this compassionate gastrologist pressed down on my stomach, to which i responded with a loud groan, and scheduled me for a CT scan. Two days later I took a CT and I left feeling optimistic that finally we were going to get to the bottom of these relentless abdominal pains, and 3 hours later I was told I had a 4.7 cm mass in my colon and two 2cm lesions on my pancreas. 

The shock has worn off after about 20 days and my mental health is cratering. My depression and anxiety has never been worse. Even im stronger and more resilient than I was in my 20's, this is just new territory. I used to fear losing my job, or my car breaking down. It would take me months to recover from even the most trivial things. I had so many anxiety triggers. Panic attacks were just a normal part of my life. I had very intense ones just going for a colonoscopies and scans even though insisted. I would often reschulde the procedure for a week later due to anxiety. Now I have realized my worse fears. My nightmare come true. The worse possible thing someone with debilitating anxiety and depression can go through. Fear of dying itself. 

Since my particular case is quite uncommon, colorectal cancer metastasizing to regional lymph nodes and to my pancreas, my Oncologist, like I assume most in his field wants to do the conventional route. Cut out part of my pancreas and most or all of my colon, install a colostomy bag(as bad as my OCD is its the ONLY thing i haven't google searched) and blast me with the highest possible dose of chemotherapy drugs possible until I glow in the dark. 

 

I see what it does to people. Ive watched countless youtube videos of cancer patients vblogging their entire experience. By the end of it, theyre unrecognizable. I remember what it was like for my aunt, who at the time my mom would visit to check on her, only to find her laying in bed vomit on the bed sheets. With this look of exhaustion and deliriousness.  I never forgot the stare in her eyes as to say, please help me. 

 

I know I just turned 40. I think a lot of people would say that is motivation enough to fight with all you have. Of course I will fight. I will try very hard, the best I can. But if my best is not enough, I cannot die feeling guilt and regret. I know chemotherapy is different for everyone. But I know myself pretty well. Im already a very sickly, mentally and physically compromised person. I will commit to one or two cycles. But if I feel the side effects are making me suffer in a way that feels like im being tortured, then I dont think the choice would be that difficult to stop treatment. Painful yes, but not difficult. Yes im 40, but I have had a very lonely insignificant dull existence. And there will be times when im taking anti nausea medication, sipping on water, eating small bits of whatever I can hold down, and God forbid I catch a cold. Ill sit up in my bed, probably staring at the floor trembling and ponder what im doing this for. A few more lonely, insignificant years of life? I don't have a wife to wake up next to, or to hold my hand and keep encouraging and supporting me. I dont have kids I can stumble across the hallway at night to watch sleeping to remind myself I want to be there for them when they get older. I dont have a mother who is the type of person I can talk to, hug, having meaningful conversations with, without being ridiculed about being deeply distraught. And because shes religious and im agnostic, shes easily annoyed at the fact I dont believe in miracles. Im stage 4 with cancer spreading to my pancreas. I would be very lucky to live another 3 years. I think I would rather go buy a dog, increase my clonazepam and tramadol and live the last 3-8 months i may have as comfortable as possible. Instead of the rinse and repeat of 6-8 months of being sick as a dog for 2 weeks, recover 2 weeks. To maybe live another year waiting for it to come back. Fearing every scan result. 

 

I have been privy and awed by many of the amazing and strong people of this forum. That have a will, grace, sense of humor, and passion for life I cannot relate to. Thats why you are all survivors. You cannot go into a battle without those elements. Not to mention being a lower working class male with no insurance. 

 

When I see my oncologist Monday, if hes willing, I want plan A to be to commit to metronomic low dose chemotherapy in pill form and see if I can even tolerate that. Maybe a few cycles of radiation. See if we can shrink the mass and two lesions. Then surgery. And again with a low dose regiment with a drastic change in diet, and loading up on garlic and cruciferous vegetables. And go from there. And whatever happens happens. If he doesnt agree to it and gives me a ultimatum to just chop out my organs and blast me with the highest dose of chemo possible, then ill probably try that too, And fail. But if he does agree which I believe they are suppose to tailor your treatment to your specific needs. The maybe I can take back my hijacked mind one day. Stop waking up thinking about cancer, spend hours a work grieving about cancer, come home researching about cancer for hours, watching videos of scientists debating the afterlife, and pondering my own beliefs and mortality. Maybe I can just come home, enjoy my dog, watch my favorite shows, and sleep more than 2 hour increments. Focus on having a peace of mind, accepting my fate, and forgiving myself. Seems like I have to go through a lot, for so little. Having to be treated with something that will make me feel like im dying just to keep me alive. Simply put, I just cant accept protracted suffering. 

I hope its not as bad as it seems. But its always worse than I hoped. 

Butt's picture
Butt
Posts: 350
Joined: May 2018

I wish this post would be read to perspectilve doctors, specifically primary care physicians, ER doctors and oncologists. It would facilitate a lovely discussion on what exactly they have to do with with such patients and how to approach the complexity of the issue, taking into consideration multiple parameters. 

Annabelle41415's picture
Annabelle41415
Posts: 6384
Joined: Feb 2009

It's going to be a hard decision but talking all of this over with your oncologist on Monday is the best thing so that you both can agree to a path forward.  They might be able to give you something more or different for pain and anxiety.  Let them know it all because if you don't they won't be able to help you get through this.  Whatever route you and your doctor decide to go, we will be here for you.

Kim

Canadian Sandy's picture
Canadian Sandy
Posts: 560
Joined: Jul 2016

We will always be here for you manapart. Hope your treatment works well for you. 

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

read or met anyone online who has similar issues or any research or studies from a oncologist regarding and taking into account the mental health and physical limitations of a patient. The closest I get is basically all related to age differences. A 5 year old with Leukimia or A 75 year old will colon cancer. It seems treatment options are almost one size fits all and if you cant endure having extreme fatigue and nausea, lost of taste in your mouth, mouth sores, neuropathy in your feet and hands, along with a ton of other side effects that reads like a commerical for one of those expensive medical products where they talk fast, then too bad theres nothing else. Im trapped between my fear of dying soon, or my fear of suffering from chemo. 

Kazenmax's picture
Kazenmax
Posts: 406
Joined: Feb 2016

It may not be as bad as you think. Treatment for various cancers are very different. Don’t compare leukemia to colon cancer. They are two extremely different things. I was ill but not sick. I never vomited. sure I was tired and nauseous but it certainly was not as bad as you have described.

you are putting the cart before the horse. I trusted my doctor to give me the best option for treatment. If yo don’t trust what your doctor says, then get another one. 

You may do better than you think. If they remove part of your colon that may actually resolve some of your other heaLtd problems. 

One step at a time. Try the dosage that the doctor suggests. If it’s too rough ask him to lower it. They can do that and still be effective.

remember we are with you. 

K

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

i will commit to whatever he thinks is the best course of action. I owe myself that chance. I just cant promise I can sustain it with the lack of a support system around me, I talked to a cancer mentor for a hour today and he described his experience so vividly. I think when people talk about battling cancer, its really battling chemo. 

Joan M's picture
Joan M
Posts: 399
Joined: Oct 2016

The fear of chemo is well founded, but you can survive it. If you are able to get the chemo, don't worry about the medical bills.  There must be some type of program to help those who don't have insuracne.  If you are unable to work, eventually you will get your disability after 6 month of being disabled, and Medicare after 2 years unless other factors allow you to get it sooner.  If you can't get help where you live, and have no family or friends, you could consider moving to a state that has Medicaid for low income adults.   

As for your mental health, many cancer patients suffer from depression and anxiety and they don't even have the experience of coping with those mental health issues.  You have been in treatment for these things and know how to manage them to get through the workdays, etc.   Yes cancer is likely making it extremely worse.   

The Folfox will cause more problems with neuropathy and loss of taste than folfiri, but studies show it as being more effective as a first line chemo.  I had 8 treatments of Folfox, which is considered to be as effective as 12.  My tumors shrunk and died and some disappeared. 

I  then went on Xeloda until that stopped working after about 13 months.  Xeloda was tolerable and didn't have any nauseau, neuropathy, or diarhea with that.    

Then onto Folfiri.  There are fewer side effects with the Folfiri than Folfox.  I don't get the mouth sores or neuropathy with Folfiri and also able to taste food still.  I do get nausea and some diarhea with it and use meds to control or curb those.   

I look at it like this:  I get the chemo and feel sick for a day or two. then have a couple weeks of feeling normal.  It allows me to stay alive.  

Good luck in whatever decision you make.  I pray you choose life!  

Joan 

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

But with mental illness its x10 and in some cases irrational and obsessive compulsive anxiety. Of course when something as traumatic and someone telling you you have cancer all of a sudden when you thought it was just inflammation, a hernia or a ulcer... time just stops. You have stage 4 cancer. Basically subtract 25 years from your life. Your usual life is upended and over perhaps and a ton of emotional, mental, physical, financial, time and family resources are now being redirected to this disease. That is what hit me intially even before I thought about chemo. And then i researched chemo and at times thought to myself im not sure what is worse, the cancer or the chemo. 

 

Now as a 40 year old agnostic who has lived a simple life where there is a lot of grey, not claiming to be a bad person but certainly not a saint. Now I have to cope and obsess with my own mortality, ponder things like afterlife and NDE. Will everything just fade to black or with my consciousness end up somewhere even worse. Reflect, and watch youtube debates between scientists, athiests, rabbi's and christians. Before each appointment or scan picking up my dads old cross necklace thinking does this in any way matter wearing this. Trying to feel something. Force myself to believe. Does praying matter? What do I believe in? And again add in the fact I have depression, OCD and anxiety disorders and well, it hasnt been a picnic and I dont gain much clarity or either side of the spectrum. 

 

Yeah you can survive chemo. But it just goes back to my previous point. To what end. Its not a cure, its a roll of the dice. There are long term permenent side effects as long as the debilitating short term ones. People still dont have the taste back in their mouth. 3 months after treatment still tired, and cant feel their finger tips. I can only speak for myself because im mentally ill and physically weak and compromised. So having my body assaulted in high doses with this as some would say, "venom" is something of course I have great concern about. I have gastropareis/paralyzed stomach. Will it make that wose? I already have neuropathy and it can drive me nuts at times. Will treatment cause more nerve damage, will it make my tinnitus, neuropathy, kidneys worse? Ive read about mouth sores and chemo brain. Lord knows my brain is bad enough already. It pretty much supersedes and is correlated with my fear of dying sooner. Because if I cannot mentally and phyiscally endure it, then yes I will die sooner than. There is nothing more I would like to do than to say oh i have a lil nausea, moderate fatigue, no appetite but im managing. Instead of being sick as a dog, vomiting anything I try to eat or drink, and so tired I cant drive, work, or in some cases not being able to even get out of bed. Thats when the thoughts of quality of life over quantity starts. It is what it is and me complaining about it isnt going to change anything. Ive commited to major surgery and chemotherapy treatments and ill do the best i can but if I cant make it through it believe me it wont be because I cant tolerate a moderate bit of nausea, fatigue, hair loss or being very sick a day or two, it will be because my immune system would collapse and the side effects would be so untenable to endure that I would rather die sooner. 

Your the only person I have heard describe treatments as being sick only a day or two. Most everyone I talk to says its pretty much 2 weeks of being sick and weak, two weeks to recover from being sick and weak, then rinse and repeat. And it gets progressively worse because of the immune system. So I dunno, but im going to find out soon enough. Just wish me luck and strength. 

Joan M's picture
Joan M
Posts: 399
Joined: Oct 2016

and the strength to cope with the treatments.  Praying for you to do well, even though you are agnostic.  

 

beaumontdave's picture
beaumontdave
Posts: 1023
Joined: Aug 2013

I'm agnostic and I've spent a lot of time pondering life, death, and the meaning of it all. Yes you don't have the answers that a religious faith would provide, but I'm quite willing to live this life with unanswered questions. If the worst is oblivion then it's no worse than before I was born. The Universe and our part in it seems to have a purpose, and I'm content to leave it at that, and whatever we can discover about ourselves. As far as the chemo goes, give it your best shot, and if it's too much, dial it down. I'm one who did the Folfox with realitively few problems, so don't count yourself out prematurely, you may handle it better than you think. I know with all your issues, everything gets amplified, the fears, the pain, but the mental anguish of not being able to let it all go for a while sounds awful and exhausting. I'd wear myself out walking if I couldn't find a fix for that. Since I now need two ankle replacements, I may have, lol.  Keep bringing it here, this place did/does me a world of good, as I don't share the inner workings of my mind anywhere else, either. Hang in there..................................................Dave  

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

to have so much of your life ahead of you, so many plans and so many things you were hoping to do all of a sudden halted. And now you have to sit and cope with your own mortality and find out how to live and what to do with so little time left. I envy believers because that have a strong conviction that in a lot of ways mitigates the fear and anguish of dying. They really dont have long drawn out deep thoughts and conversations about the prospects of a afterlife, or what happens to your consciousness. Not having a core belief and knowing is tormenting in a way. 

95% of the peopele ive talked to said Folfox almost killed them. So im not looking forward to taking it, and im still considering whether i will or not. I already have existing physical impediments so I dont want to find myself having to endure protracted bouts of violent sickness. 

Whatever happens happens and I have to deal with it one way or another. I dont have much control or choice or anything. Thanks for yoru commments and encouragement

Annabelle41415's picture
Annabelle41415
Posts: 6384
Joined: Feb 2009

I'm not sure who you talked to but Folfox is doable.  It's hard but you can still manage your life and do things.  It is not easy for everyone though and some tolerate it better than others.  It is a powerful drug and can help reduce some tumors so people can have surgery.  You can get a wealth of information here as to how you are feeling if you decide to go through with it.

Kim

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

Im sure its doable. My mind is probably inflating the severity of its side effects. (OCD). Most say it gets worse each cycle. I always think back to the time I was given citalopram for my anxiety. I took my first pill that night, had to be rushed to the hospital 3 hours later. Im just super sensitive to certain things. If there is a reasonable path forward without having to be on it I will take it. Otherwise I will see soon enough. I have already committed to doing what is necessary. I just want to collaborate with my ongcologist to find the right dose, combination of drugs and therapy to give myself the best possisble chance to beat this and stay on a regiment I can tolerate. Even if its rough. He gave me more of a ultimatum and reminding me what the consequences are. Um, its spreads and I die slow and painfully in the near future, good to know doc. My biggest concern really is neuropathy and extreme nausea. Im fine with fatigue, sleeping is a hobby for me.

Phoenix_66's picture
Phoenix_66
Posts: 118
Joined: Jun 2017

Rod, folfox was not as bad for me. I was slightly nauseous but never vomited. Just kinda felt icky. Two days after treatment I was back to normal. I was able to continue working throughout except for treatment days and even mowed the lawn and went to fire calls with the pump in my pocket (Maybe not the best idea).

flutemon's picture
flutemon
Posts: 20
Joined: Jan 2019

I did 6 rounds of folfiri with Avastin and the only side effect I ever had was losing 1/2 of my hair. I've just finished my 2nd of 6 folfox treatments (mop up chemo after liver resection) and have had no side effects to this point.  The pre-meds I was given seemed to be very effective, and I've stayed super hydrated.  And all of this being stage 4 and living with the effects to my body of severe polio as a baby and chronic fatigue assoociated with post polio syndrome. 

 

I definitely feel you.  For me, the fear of the treatment was much worse that what the treatment actually was.  I feel a little guilty because to this point the treatment road has not been difficult.  But even though I'm 62, I've got way to much life left to live!  My daughter just gave me grandson number 3 and I want to be around to help influence him and his 2 big brothers. 

You may not be able to control the situation or treatment, but try to find something in all of this that is within your control. Focus there.  Hold on there.

feckcancer
Posts: 110
Joined: Jun 2018

please try not to be scared. whatever happens you will meet some of the most kindest and bravest people that you have have ever met. Some doctors are looking into a link between depression and cancer & who knows, as you get better your depression/mental health issues may as well too.

if there is a link does the cancer cause depression or does the depression cause cancer?

there were a few post re this before this site crashed and it seems alot on here did have bad depression as i did myself. 3 years on no cancer no depression but i am only starting to feel as i am healing now but thats okay, it is what it is. 

Can i please make a suggestion? you say you obsess. make yourself obsess on a cure and follow it through, only focusing on that. research what is helpful & disregard the rest. You know you have to do the chemo etc but make it work more powerfully for your good by anything that is positive towards cure be that prayer, crystals, tumeric, medical MJ, not eating red meat, not smoking, meditation whatever. if your doctors okay it do it and only worry about the other stuff if it happens. if you are not dead at this very moment in time don't waste time you could be using to learn about helping to heal yourself 

i hope this is helpful for you. so easy to go down a black rabbit hole when you hear the word cancer. i was so scared but it was ok but had the attitude whatever i had done to contribute to me gettinng cancer by my unhealthy habits i had to stop. fix what you can & trust your doctors. you have to be brave. You have to be tough.

BTW for me i went into hospital for chemo because i was attached to a drip and had chemo 24/7 for a week twice. two serperate occasions of a whole week of my body being flooded with chemo for 24/7. the only break was when they changed the drip. and guess what. no sickness, no nausea, no baldness. nothing. was out shopping the day after i left hospital.

Take care

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

I understand what you are saying. I was given the entire list of side effects of the chemo they are about to put me on as well as the effects of the radiation. The other night I woke up and couldn't go back to sleep. I began to beg the universe to stop all of this, make it a dream or whatever. It sucks that we are all given a choice of taking very harsh and unforgiving drugs or dying. I said as much when I was cussing at the universe but that didn't change anything and the choice is still the same.

Sometimes life is unfair and that sucks too but please don't give up over that. I would suggest finding a depression and anxiety support group if you can. If you are feeling well enough physically go out and take a walk. Around here we have an old mall that is still somehow doing okay and I like to go there. Maybe you have something similar? Do you have any old video game systems? Break out Super Mario or something. Local pet stores often have adopt a dog days that you can go to. Even if you don't intend to adopt you can do down there and pet them. In my expeirence dogs can help a lot.

Cancer is an experience that we all on this board must go through as much as we don't want to. The only choice we have in the matter is how we deal with it. We have a choice in how we view our situation. The more optomistic the view the better the quality of life. Maybe you have three months to live or three years. Maybe you'll end up like the cancer survivor I know who was told she had months to live but has lived cancer free for almost thirty years. No one knows how much time they have but they can choose how they spend it. I would urge you to continue doing the things you like to do. Don't let your mind spend all of it's time thinking about cancer. There is more to you than your diagnosis because you are not your diagnosis. Please try to be positive. 

 

Butt's picture
Butt
Posts: 350
Joined: May 2018

Who pays for the chemo? I know you were concerned about it. Butt.

Kzzararat
Posts: 6
Joined: Jun 2018

What I want to say is, please don't fear the unknown.  Someone earlier said treatments are not the same and that is so true.  Me and a couple of other Colon patients I know did not suffer the devastation that is typically connected with Chemo.  I did loose some weight due to no wanting to eat.  I did have my share of peanut butter and jelly!!   My hair thinned but did not all fall out.  I was able to care for my 6 year old daughter and take my dog on walks.  And yes I was tired and went through some tough times.  One piece of advise I have is stop looking at the internet!

Do what you can, eat what you like and rest.  I hope that you find peace in your decision whichever path you choose. 

My history:  I had colorectal (stage 4) with extention to my liver.  I did have radiation to reduce the mass  and a 10 hour operation.  My rectum was removed and I had a Colostomy bag (which was temporary) for a year.  Along with 8 months of Chemo.

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

Its hard not to fear. I try to inundated myself with information, to be informed of something particular a disease that can take my life within months. And yes I do very much am heartened by the many many remarkable suvivor stories and positive information that I get from reputable places like American Cancer Society and its forum members. Always Mentor programs that have people either in remission and battling cancer calling you personally to share their positive experiences. But I cant ignore all the other vast information about the trials and errors of cancer and its treatment. When I go visit my oncologist I want to be at least fairly well read up on my particular condition so when I ask him questions or he recommend things to me I can have be somewhat in the ballpark about what hes explaining to me. Ive reduced my googling and youtube watching though. Though some of the vblogging gives you insight at how graceful and dignified people go through the struggle. 

 

Im not sure its really my decision at this point. Cos im not at the point of saying i refuse treatment or cant tolerate the pain and sickness. I havent had surgery or chemo yet. I have committed to both but preferably the lowest dose possible to significantly lesson side effects even if i had to be on it indefinitely. But if he tells me I have no choice but to get put on the highest standard dose that I am 99% sure will make me feel like the walking dead, then I will commit to that as well. And more than likely fail to be able to endure it. 

 

I have to be honest, pyschologically, a colostomy bag would be very traumatic and I dont know where my dark thoughts and mind would take me having to deal with that. Out of all the things id did research searches for, that has not been one of them. Im afraid to even see it. 

 

I commend you for your will power and heroism through all of this. Than you for sharing your experiences, the encouragement and your advice. Please keep me in your prayers, my name is Rod. And send me your best wishes. 

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

I have an illeostomy. I'm not sure what the difference is between that and a colostomy. The good part is that the IBS I had as long as I can remember is gone. Even if I have diarrhea from a drug or something I can't tell. No painful cramps or feeling like I'm going to pass out or any of that crap. Making plans based on how close I can stay to a bathroom, that kind of thing.

But I hated it at first. I looked at Google pictures of the stoma and was freaked out. Turns out mine doesn't look too bad at all. The first time I had to change the bag myself at home I stood there crying while my husband did it and I sobbed about looking like Frankenstein. It took a few months but I got over it and am now happy to have it. I could have had it reversed several years ago but chose not to. My quality of life is better with it. And my surgeon said the IBS would probably get worse after. No thanks. I'm so glad to be over that. Being embarassed when I'd leave a terrible smell in a public or work bathroom, the noises, feeling so sick, I'm so glad it's over. I made job decisions based on where the bathroom was in some cases. And I knew where the bathroom was in every public place I've ever been.

Like everything else in this situation, you get used to it, it just becomes another part of you. 

Jan

 

YROSS
Posts: 17
Joined: Mar 2019

is falling apart, I can't breathe..we had so many plans and yesterday we were told CEA is 3010, after Scan Mayo tells us the cancer is growing along with new spots, mostly in liver and left lung...he had emergency surgery in oct/2017 has only had 6 weeks off of chemo, last line of therapy is ironatican and they indicate if we begin on Tuesday he will have 2 months to live that is with this aggressive treatment.  My Husband went from weighing 185 and now down to 130 pounds.  He is so fatique that he cannot get out of bed.  Dr. gave us no other options other then a hand off to hospice.  I am so sick about knowing that what we thought would be 5 years has turn into less than 2 years.  I do not trust these doctors, I beleive something went so wrong when he was getting treatment in the fall he had rigors and then we end up in hospital with a collapsed lung I know chemo created this, he has not been right since.  I am so angry with Mayo, We have had one problem after another from the very start, I could write a book.  My husband was so healthy he should have had at least 5 years.  They have costed us more time.  Does anyone have any ideas?  I feel like hospice would just be giving up after all that we have been through. He has followed all the rules including diet.  I feel like we are being lied to.  Thank you 

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

i read about you and your husbands situation. Chemo does seem like a 50/50 roll of the dice. But at this point it is all researchers and doctors have been able to do and use medically. I read a story about a oncologist who got cancer and refused chemo. I found that very interesting. For it make just be luck to be able to have a form of cancer that responds well to treatment, and for some it doesnt. Its a crap shoot. I wish I had answers. I can understand trust in your doctors have eroded. But even I cant complain too much because they only know and can do so much. I think you both just have to look each other in the eyes and have that conversation, and deep down I hope you can find that feeling of clarity to know what you feel is the best thing to do either way. 

 

If its ok and this is your first post im going to post this in the main thread so it can be seen and you can get more feedback from the wonderful members here. My best wishes to you. 

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

Rod brought up a point that I'm curious about. Folfox is rough but how many people experienced nausea with it? I didn't. Fatigue, yes, and the cold sensitivity. The neuropathy came later. But I don't think nausea is a side effect typically, is it? I'm curious as to if that's typical or not?

Jan

Joan M's picture
Joan M
Posts: 399
Joined: Oct 2016

The Folfox caused other problems, the electric shock sensations and blurred vision day of treatment, had some nauseau but seemed much less than withe the Folfiri.  I didn't have as much neuropathy as people describe either.  I was only on Folfox for 8 treatments and the neuropathy lasted a bit longer with each treatment but was mostly gone by next treatment with a bit of residual numbness for a couple of months.  

There's a definitely a difference in side effects depending on which chemo you're on.  

Looks like some people don't tolerate the chemos pretty well and others suffer.  Hard to know how it will affect you before you take it.

 

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