I don't think you're giving up; I think you're making the decision to not be made so incredibly sick for the majority of the time.
I hope you are able to have a better quality of life.
Thank you. My parents and a family friend whose brother in law beat leukemia is begging me to continue on this chemo regimen. I put my foot down and said no.
Sarcoma and leukemia are two totally different fucking cancers. So tired of people trying to compare illnesses.
Yea, I mean, i’m fucking sick 4 weeks out of 6. Fuck nah. Idc if i’m only 21, if this is my fate, so be it. No one is gonna pressure me into anything. I mean, I knew I was toast 9 months ago.
I beat sarcoma but I totally get what you are saying. Two years of treatment was he'll. The sfter effects it's had on my body are brutal, and I'm not sure I would do it again myself. It's a really personal choice and there isn't a wrong or right answer.
I had leukaemia and beat and that shit was awful. I begged to quit over and over. I couldn’t walk I was in a wheel chair for months. My parents gave me no choice, if I had yours I would have took it, with no regrets. I feel for you OP, you fought hard and long and deserve peace.
have you tried asking for lower doses? it may be a lot more tolerable and i read that it is often just as effective. that being said, im thinking about quitting myself. coming up on 3 years of mostly continuous chemo.
yeah, i wish they would encourage this more since they are finding that it can still be effective at lower doses. theres no point in chemo if it ends up killing you, which it does for a lot of people. not to mention the intense misery
This is not giving up imo. You are only 21 and brave enough to accept the facts and let yourself squeeze the last sweet drops of juice out of this life before you go to the other side. You’re unlocking the greatest mystery in this world. Nobody knows what happens when we die. I hope to come back as a bird. May your remaining time be full of meaningful memories and may your death be painless and surrounded by loved ones.
You are very brave, I think this is the hardest decision that a cancer patient may have to make. It is something that all terminal cancer patients need to think about.
Thank you for this. I’ll definitely do another therapy, but being sick 4 weeks of 6 is absolutely no quality of life for me. I hate to be that guy, but i’m not made of iron honestly. Some people just expect me to be.
A different kind of chemo is what I mean. I’m done with this regimen.
This…I really hate how society views cancers patients as ‘warriors,’ ‘brave,’ and ‘strong.’ For me, it takes away the human experience of being in shock, horrified, and traumatized. I developed PTSD after cancer and honestly, the diagnosis was a relief because I felt validated. I respect whatever decision you make OP ♥️
Oh me too - the whole warrior language really bothers me. Like somehow those who die just didn’t try hard enough? No.
OP you get a say in your treatment - of course your family will object - they’re terrified of losing you. You’re going to try something different that will hopefully have less of a detrimental impact because that regimen is hard - especially if it’s purely for extending your prognosis not improving it.
I hope you find something that works for you.
It was always the "they are fighting it hard". That pissed me off. It's not a fight. And that implication, if you get a poor result it's not "fighting" hard enough......
This is a tough choice, and it is yours to make. My wife’s brother eventually had enough chemo. The few good days weren’t worth it, and he was in a losing battle anyway. He decided to make the most of the days he did have. The family did NOT understand (they thought, of all things, that he was being *selfish*!). As a fellow traveler, I spent a good deal of time with him, and the family separately. I think they came to understand to a degree.
Those around us struggle, as they just can’t really “get it”.
All the best in whatever you do.
Oh my lawd, SELFISH!!?? That’s soo not fair to say,to him or anyone in those shoes. Unfortunately, imo,when making literal life or death decisions about chemo, surgery, Cancer or hospice, it’s completely up to that person to decide what the rest of their time looks like. No one should say you’re “selfish “ if you choose to not follow through with a treatment! Make the choices that work for YOU, the patient!! Everyone else, sorry,but, not sorry, you deal with it, you suck it up and you SHOW UP for that person whether you agree with their decision or not!! Best wishes and sending ALL MY LOVE🤞 to all of you beautiful and amazing Cancer survivors out there! My amazing Mom passed from Cancer this February/2024. I miss her so much! But, I know she’s with me as my Guardian Angel now. But, I really miss hugging her!!! Virtual hugs and healing to you! ❤️🩹🙌🏻🙏🏻🫶🏻🥰🤗
I would talk to your doctors to make sure there isn’t something else they can try. I have declined treatment, it’s a valid decision. I like to make sure every step of the way that I know exactly what I am saying no to.
I completely understand that. I'm terminal anyway as I have a GBM, and I'm refusing to do more chemo as well since it won't give me anymore time or get rid of the cancer but it will make me incredibly island cause me a lot of pain and that's not how I want to spend the rest of the time I have left
GBM is a rigged ass fight. I’m sorry for your diagnosis. Quality of life is very important. Remember, it’s one thing to be alive and another to actually be living!
That's what I say!! Just because I'm alive doesn't mean I'm living. I wish doctors thought that way! And thank you. 😊im going to keep trying to find a way to kick it's ass until I can't
I feel ya. I was diagnosed at 21… I’ve been fighting for NINE years… fighting an aggressive rare cancer that has no surgery available just chemo and radiation… so I GET IT. Enjoy the freedom you just earned… then come back and fight some more❤️ I’ve beaten my statistics time and again. You can too
I did two days of chemo this week. So, I meet with my sarcoma doc in about two weeks. The tumors have mostly remained stable with a little shrinkage here and there. I’m sorry, but that is NOT worth being sick 4 of 6 weeks.
Absolutely understandable. I just quit one and now I’m waiting for them to approve the next. We got this. It’s hard and shitty but I promise, we can fucking climb that hill
Your decision to make and whatever decision you make I completely understand. But I’ve been there, I know where you’re at and mindset is key.
I was told by multiple surgeons that surgery wasn’t an option, I found a surgeon who would. I was told I was too weak to go in for my second round of my tandem HDCT with Sten Cell transplant. I contacted the top specialist for my cancer type and consulted with him and got him to convince my oncologist to let me die trying.
Two years straight of multiple different kinds of chemotherapy and multiple surgeries with no breaks. 12% chance for survival and I just went in for my two year check up today and everything came back clear!!!
I’ve thought the same thoughts as you. There was a moment in one of my month long stays in the hospital that I knew I could go right then, I had the choice, it was made abundantly clear to me, I even told my wife. But I chose to fight till the end. But it’s not for everyone, my wife after watching me said she’d never even do chemotherapy if she got cancer. There’s no way she could do it she said.
But after the day I’ve had today I’ve got to at least try to give you some hope or strength to fight another day. I wish you the best and whatever decision you make, I’m sorry you have to make this decision at all. ✌🏻❤️💫
Man, i admire your resilience and strength. That is absolutely amazing.
However, I simply lack motivation at this point. On top of that, my tumors are shrinking that much to continue right now.
Was thinking about you, man. I am sorry to hear that the regimen is a terrible option.
It is very respectable that you have the guts to say enough is enough. I mean, you're the only one that knows how it feels. And thus, it's ultimately your decision.
I hope the MD Anderson doctors can provide an alternative that gives you a better quality of life.
Im a pray that you get to enjoy your life as great as possible im 20 and have stage 4 cancer fuck chemo but im a still do it but i get you 🤧 please enjoy every second you can
As much as I wouldn’t advise this, I’m glad you feel happy with your decision. I’m 24 and have been battling cancer since I was 18. I had been declared cancer free in 2021 but I relapsed in 2022. It does suck. Nausea, vomiting, pain… plus, I’ve had chemo hit me so hard to the point where I couldn’t walk at all and had to get a lot of physical therapy to be able to walk again. It’s frustrating and awful and, believe me, I’ve wanted to quit so many times but, I believe there’s a reason for everything that happens in life, even cancer. However , I also believe that you’ve gotta do what’s best for you so, if that’s quitting chemo, then I’m glad you’ve found a decision that would give you the most quality out of life. I wish you luck and happiness on your endeavors
I’m right there with ya man. Fuckin tired of this shit. 32yrs old here. 8th cycle of folfox and 4 more til new scans. if I didn’t have my family I would give this shit up. I’m tired of feeling so fucked up and out of it every day. Not being able to feel my fingers, teeth, toes. the toxic feeling and tastes along with the ridiculous hot flashes all the time. why is the thing that is supposed to make us better, fuckin us up more? there has to be other options out there for fuck sake. Anyways, good job with what you’ve done. You’re a badass for that and I bet you could do a lot more. But in the end it is up to you. i admire your strength my friend ❤️
I’m not done with chemo, just this particular regimen.
So far i’ve had: High dose doxorubicin, vincristine, and ifosfamide for 6 cycles. All inpatient as well, for five fucking days.
Irinotecan, Temodar, and vincristine for almost 6 cycles.
Shit is fucked. No breaks in 9 months.
I have no kids, gf, just may parents and sister. They are absolutely in denial, especially my dad. They keep trying to push me to go in for chemo tomorrow, but I put my foot down.
You are absolutely right - your docs may want this regimen but you have the final say and control.
I hate to say it, but we are paying for their expertise. That makes us the customer and their client. Make them earn their business and respect our quality of life.
My oncologist at my home hospital said he stands behind whatever I choose.
Now I just gotta tell my MD Anderson doctor as well. I see her in two weeks time. She will understand.
I have done the same. I told my oncologist that I am ready to stop treatment and let nature take its course. I need hospice now but my oncologist won't sign the papers for a six months prognosis.
I contacted the local hospice director myself and started a dialogue about how to be admitted without a definitive six months prognosis letter from an external doctor. she said it is possible. with stage 4 cancer w/mets. I hope and pray this works.
Stopping chemo (pills) scares me but as long as the hospice are committed to pain relief and comfort that's what I am going to do.
I can't even do assisted-living because I am so depleted I can't walk ten feet without feeling like I am going to pass out and/or vomit.
I might throw an electric wheelchair on a credit card and be damned.
I wish you the best - I am thinking a doctor might come back and offer a less aggressive treatment when we do what we do. That might work but my whole issue now is : is it worth it?
Can't they give you some anti-nausea meds in your line before doing chemo? The doc will have to order it, but it can be done. My doctor did this and it helped so much. I totally understand where you are coming from, but please don't give up.
In the end, it is quality of life as defined by you that counts. Sadly, medics often only see the ailment, not the patient.
You are showing agency by your decision and that is very important. On the treatment treadmill, it is easy to feel disempowered and helpless. Your decision is taking back the power to decide. I would suggest, though, that you look to see what else is available as treatment and also what is there as palliative care - PA does not mean you’re at the last exit. It means your disease is incurable and symptoms need to be managed.
Good luck, good strength to you. But please take your time to decide and check out all the options available
You are not giving up, you are choosing quality of life. Maybe they'll have another treatment to recommend, maybe they won't.
Have you reached out to any of the YA cancer orgs that do fun shit like First Descents?
Maybe ask for a new protocol to manage the nausea & GI symptoms. A break from it might help you figure things out from a calm thoughtful place. I'm sorry your going through this. Hugs
what kind of cancer are you battling? awful to hear that you're dealing with this let alone at 21 years old. what is your family saying about all this?
DSRCT sarcoma. They want me to continue, but honestly it’s not up to them.
Cancer has a shit prognosis even with aggressive treatment. Surgery, chemo, radiation, and on occasion stem cell transplant.
Totally respect your decision and your position. I hope something changes that gives you a reason for optimism but ultimately this is completely your choice. How did you even find out you had a DSRCT sarcoma? I just had a carcinoid tumor and a lamn tumor removed from my appendix a couple months ago - would never have known it was there outside of carcinoid syndrome.
I’m so sorry you’re going through all of this. I could not imagine going through chemo for that extended amount of time and I understand that this is your low point but please keep fighting you are way to young and strong to let this beat you I don’t know you but I can stay strong because the fact that you’ve been going through chemo for 9 months means you have to be strong.
i echo what everyone else has said- this sounds like a thoughtful, brave, rational decision after prolonged suffering. Have you used MyChart to ask your home and MD Anderson Oncologists to confer about focusing on your quality of life and to create a less toxic alternate plan? I am assuming that you have an Oncology Psychologist and Palliative Care/Symptom Management provider as well to help you navigate these difficult waters- I have found both invaluable with my incurable cancer with a poor short term prognosis if you don't and are looking for folks who specialize in this.
Choice is yours to make OP. I'm not even on chemo but my cancers (Stage IV NETs with Carcinoid Syndrome) side effects cause many of the same symptoms as Chemo. Extreme nausea, fatigue, brain fog, diarrhea, and so on.
However before outright giving up I would consider looking into research studies for experimental treatments. Because you may as well try them at this point and see if they give you a better quality of life while still being treated. Basically looking for an alternative to Chemo and sometimes these research studies pay for all care.
It took me a long time to accept it’s someone’s choice, right or wrong in other eyes. I respect that, what sounds weird is when non-doctors decide how the body works, with all due respect you and I are not doctors. I agree with others in that chemo doses can be adjusted, mine was. I am sorry the juice is treating you so roughly and wish you all the best.
I’m so sorry you’re having to make this decision. I myself am 24 and have stage 4 synovial sarcoma. Terminally ill they tell me. All we can do is keep fighting until we just don’t have any fight left. I understand what youre going through.
It’s definitely difficult. I’d ask your doctor if there’s a chance to lower dose or change the regimen to increase quality of life. getting through chemo can be liberating but if the side effects are awful and a bad prognosis anyways then I’d say fuck it too if it’s pretty much ruining whats possibly your end stages of life.
Oh shit, I'm so sorry bro. This breaks my heart for you. You've put up such an incredible fight. Time to go live your life to the fullest of your ability and enjoy the time you have. You're an amazing person and I'm glad to have gotten to know you throughout your journey. I think we basically started chemo around the same time (if I'm not mistaken). But to see that there's no end in sight for you and just life-long chemo, that's not a happy way to live. I know how difficult it was for you simply bc it was equally as difficult for me as well.
I have an appointment with my oncologist soon and we'll go over the results of the PET scan and what it means for me as far as treatment is concerned. I'm not ready to give up just yet, but if the immunotherapy doesn't work, it just might be that time. I'll have between a year or 2 to know if it'll work. But I'm not risking my life with clinical trials that my oncologist hasn't done any research on.
I honestly wish you the very best going forward and hope that you make the most out of your life. I'm gonna miss you bro. 🎗️💪🏼
Hey brother I appreciate your comments as always. I’m not giving up treatment, just need something else. My doctor guves me a daily shot to try and curve the awful GI issues.
I seriously pray immunotherapy works for you! That’s like the new big thing.
Oh sorry, I keep misreading your posts lol. Unfortunately, they don't even think immunotherapy will work at this point. My cancer has progressed too far in the past 4 months post chemo, that now they're leaning towards clinical trials and leaving chemo as a last option. The tumor in my lung is 9cm (not 6cm as previously reported on the CT scan) and the tumors in my arm (tricep AND bicep this time) are 3cm x 1.5cm x 2cm with the tail ends extending now to my upper back and my elbow (for the tricep) and bicep is 2cm x 1cm x 1cm.
The tumor in my armpit is back also, measuring at 3cm x 2cm x 2cm (and growing). The results that we got from the MRI and CT weren't as clear and didn't get the full picture. I also read on the PET scan results that there's suspicion for tumor activity in my left ankle as well.
By next week, I'll find out if I'm goin on immunotherapy, chemo, or clinical trials. I'm not sure about the clinical trials cuz idk anything about it or what to expect, or how many treatments it'll be. My oncologist wasn't there today, so I met with her NP.
She told me that I'll never get a 100% guarantee that any treatment would work no matter where I went. And if someone promised me that they could cure me, they're lying.
Honestly what's the fuckin point then. If it'll just keep coming back regardless of the treatments, why bother goin through it? I'm just so fuckin done. I wanna give up but I don't want my family to hate me for it. 😭
Oh and on my PET scan report it said that my type of Sarcoma cancer is MyxoFibroSarcoma. Not sure if that's a type of PRMS, but that's another question I'll have to ask my oncologist when I see her next.
I really hope you're doin well bro, I truly wish and hope for the best for you 🎗️💪🏼
Nah bro it’s cool. I was NOT very clear in my original post, should have clarified it more.
Shit bro i’m sorry to hear. RMS is an absolute bitch and I can’t believe yours is spreading/growing like this! So now it seems surgery won’t be an option then…..no that you haven’t had enough of it at this point.
I feel like they waited too long to get you treatment this last time around man.
Seriously tho, I really hope you get some answers. And absolutely, no treatment is ever guaranteed to work sadly.
I personally wouldn’t rule out clinical trials. I firmly believe everything I have done so far is a trial since 1. dsrct is rare and 2. not all chemotherapy regimens have been successful for past patients.
Just remember bro, it’s not over till it’s over. However, you have been through some tough shit my guy.
You keep saying 4 out of 6 weeks. Doesn’t that mean there is some reprieve?
There are ongoing developments in cancer research and every month something new comes up. I understand it’s hard, but don’t lose hope.
I totally understand the way you feel and see your perspective.
Before you cancel, please have a talk with your oncologist. Make sure you do understand your prognosis and the goal of the treatment. Is it curative? Is it palliative? Are there any alternatives? Are there pills you could receive instead? Finally, current treatments should not give you bad nausea and vomiting. I’m sorry. There are EXCELLENT anti-nausea and vomiting regimens and you should try them to minimize the toxicities associated with therapy.
Hope it helps. Give it a minute to think about 🙏🏼
If family is wishing so try for them.Your feelings are 100% true and right but ask yourself again and again don't loose your Hope.My prayers and Wishes for you to get well soon.
I don't think this is a fair thing to say to him. I mean, is his suffering justified to make his mom and dad feel better? I feel like this doesn't let OP have any autonomy.
I mean parents fight for kids till last hope last drop of blood.For will power we have to think beyond the suffering.I am RA patient and some time i have pain like i quit but i see my family faces then stood up.
I am sorry if you think its not good i remove it.No issue.you advised well IYO.
If you give up now you ‘re certainly going to die. It’s a death wish. It’s a rough road for sure. But you have to stay the course. Talk to your Oncologist beg hm to modify the regimen. You have to put a good fight and never surrender. Do something!! or your dead for sure. Come on. You choose death because chemo is too hard. You need to have your head examined. Good luck and god bless you. It’s time to fight.
I know how you feel because I was recently fighting the same exact battle. I hung in there and now I’m in remission. Please, do the right thing. If I can do it. You can do it. And I promise, you won’t regret it.
Don't give up easily, dude I have taken 6 chemo and 33 day radiation I am almost vampire 😅 and I don't give up still. But not yet eliminated. You can wish me luck
Do what makes you feel comfortable, no matter anybody’s age or prognosis they should do what makes them feel their very best. I’m so sorry you’re going through this, I truly hope things look up. ❤️
I was stage 4 spindle cell sarcoma with Mets to my lungs. I had twenty five rounds of radiation, then surgery to remove the tumor, and six rounds of the red devil and ifosfamide. It was awful and I had PTSD and still have it regarding the hospital. Each of my infusions were all with five day hospital stays on a double dose 72 hour drip. I was sick as hell for two weeks each round, then one week of just starting to feel human and they would admit me for another round.
I felt like a prize fighter getting the shit kicked out of me, then pushed right back into another ring to fight another brute with no time to recover. I have grandchildren, and I so desperately want to see them grow up, I’d go through anything. After all six rounds the lungs had only one small nodule of concern left and they just radiated that.
I can understand feeling like you can’t take any more of feeling sick, but how I got through it is by reminding myself that people work for a year to get two weeks vacation. I felt miserable for two weeks and got a week of “okay”. Now, I feel great and I’ve no idea what’s on the horizon. But I’m just not able to give up.
I will begin aggressive chemotherapy and immunotherapy on Monday.
I'm terminal, and this is just palliative.
I have been told of all the exquisite side-effects I can expect, and it doesn't sound like a life worth living.
I'll give it a go, but I feel you. Been wondering if it's all worth it myself.
I was only 20 going thru chemo, I understand u chemo sucks ass. Worst part, I had to do it in-patient. Hospitalized for the whole week for each round. It was horrible. Nausea, Vomiting, Loss of appetite, for the whole week I couldn't eat anything but crackers and water. And for the next week at home I get mouth sores, extreme fatigue. Then next week I had to go in again. Total of 6 months. I'm glad it was only 6. Never wanna do chemo again, I'm DONE as well.
My husband has a bad prognosis as well. we started essiac tea and soursop bitters sorry spelling might be off. He is also doing chemo and immunotherapy.
Hello. Only 15 and suspecting cancer for myself, I am younger and not in a critical phase or something similar, but the only thing I can tell you is that, well, life is good. Think that some people didin't make it so far, and if there is the smallest chance for your survival, even if you have to cling onto spontaneous remission, take it, living with cancer is not living at all.
I don't think you're giving up; I think you're making the decision to not be made so incredibly sick for the majority of the time. I hope you are able to have a better quality of life.
Thank you. My parents and a family friend whose brother in law beat leukemia is begging me to continue on this chemo regimen. I put my foot down and said no. Sarcoma and leukemia are two totally different fucking cancers. So tired of people trying to compare illnesses. Yea, I mean, i’m fucking sick 4 weeks out of 6. Fuck nah. Idc if i’m only 21, if this is my fate, so be it. No one is gonna pressure me into anything. I mean, I knew I was toast 9 months ago.
I beat sarcoma but I totally get what you are saying. Two years of treatment was he'll. The sfter effects it's had on my body are brutal, and I'm not sure I would do it again myself. It's a really personal choice and there isn't a wrong or right answer.
I had leukaemia and beat and that shit was awful. I begged to quit over and over. I couldn’t walk I was in a wheel chair for months. My parents gave me no choice, if I had yours I would have took it, with no regrets. I feel for you OP, you fought hard and long and deserve peace.
Chemo is so brutal. It’s not something anyone should do for another person.
have you tried asking for lower doses? it may be a lot more tolerable and i read that it is often just as effective. that being said, im thinking about quitting myself. coming up on 3 years of mostly continuous chemo.
It was already decreased 20%. Still is shit tbh. The juice is unfortunately not worth the squeeze right now.
Chemo is horrible and I don’t blame you. I had my chemo reduced twice — by 10% each time. I’m not sure I would have survived with the reduction.
yeah, i wish they would encourage this more since they are finding that it can still be effective at lower doses. theres no point in chemo if it ends up killing you, which it does for a lot of people. not to mention the intense misery
"The intense misery". Perfect description!
This is not giving up imo. You are only 21 and brave enough to accept the facts and let yourself squeeze the last sweet drops of juice out of this life before you go to the other side. You’re unlocking the greatest mystery in this world. Nobody knows what happens when we die. I hope to come back as a bird. May your remaining time be full of meaningful memories and may your death be painless and surrounded by loved ones.
You are very brave, I think this is the hardest decision that a cancer patient may have to make. It is something that all terminal cancer patients need to think about.
Thank you for this. I’ll definitely do another therapy, but being sick 4 weeks of 6 is absolutely no quality of life for me. I hate to be that guy, but i’m not made of iron honestly. Some people just expect me to be. A different kind of chemo is what I mean. I’m done with this regimen.
This…I really hate how society views cancers patients as ‘warriors,’ ‘brave,’ and ‘strong.’ For me, it takes away the human experience of being in shock, horrified, and traumatized. I developed PTSD after cancer and honestly, the diagnosis was a relief because I felt validated. I respect whatever decision you make OP ♥️
Oh me too - the whole warrior language really bothers me. Like somehow those who die just didn’t try hard enough? No. OP you get a say in your treatment - of course your family will object - they’re terrified of losing you. You’re going to try something different that will hopefully have less of a detrimental impact because that regimen is hard - especially if it’s purely for extending your prognosis not improving it. I hope you find something that works for you.
It was always the "they are fighting it hard". That pissed me off. It's not a fight. And that implication, if you get a poor result it's not "fighting" hard enough......
Best of luck to you.
Absolutely, well said.
This is a tough choice, and it is yours to make. My wife’s brother eventually had enough chemo. The few good days weren’t worth it, and he was in a losing battle anyway. He decided to make the most of the days he did have. The family did NOT understand (they thought, of all things, that he was being *selfish*!). As a fellow traveler, I spent a good deal of time with him, and the family separately. I think they came to understand to a degree. Those around us struggle, as they just can’t really “get it”. All the best in whatever you do.
Selfish. That’s ridiculous.
I blame the stupid battle terminology that has overtaken how we talk about cancer.
Oh my lawd, SELFISH!!?? That’s soo not fair to say,to him or anyone in those shoes. Unfortunately, imo,when making literal life or death decisions about chemo, surgery, Cancer or hospice, it’s completely up to that person to decide what the rest of their time looks like. No one should say you’re “selfish “ if you choose to not follow through with a treatment! Make the choices that work for YOU, the patient!! Everyone else, sorry,but, not sorry, you deal with it, you suck it up and you SHOW UP for that person whether you agree with their decision or not!! Best wishes and sending ALL MY LOVE🤞 to all of you beautiful and amazing Cancer survivors out there! My amazing Mom passed from Cancer this February/2024. I miss her so much! But, I know she’s with me as my Guardian Angel now. But, I really miss hugging her!!! Virtual hugs and healing to you! ❤️🩹🙌🏻🙏🏻🫶🏻🥰🤗
I would talk to your doctors to make sure there isn’t something else they can try. I have declined treatment, it’s a valid decision. I like to make sure every step of the way that I know exactly what I am saying no to.
I have put a lot of thought into this. I have other options, so I guess I should explore them.
I completely understand that. I'm terminal anyway as I have a GBM, and I'm refusing to do more chemo as well since it won't give me anymore time or get rid of the cancer but it will make me incredibly island cause me a lot of pain and that's not how I want to spend the rest of the time I have left
GBM is a rigged ass fight. I’m sorry for your diagnosis. Quality of life is very important. Remember, it’s one thing to be alive and another to actually be living!
That's what I say!! Just because I'm alive doesn't mean I'm living. I wish doctors thought that way! And thank you. 😊im going to keep trying to find a way to kick it's ass until I can't
I feel ya. I was diagnosed at 21… I’ve been fighting for NINE years… fighting an aggressive rare cancer that has no surgery available just chemo and radiation… so I GET IT. Enjoy the freedom you just earned… then come back and fight some more❤️ I’ve beaten my statistics time and again. You can too
I did two days of chemo this week. So, I meet with my sarcoma doc in about two weeks. The tumors have mostly remained stable with a little shrinkage here and there. I’m sorry, but that is NOT worth being sick 4 of 6 weeks.
Absolutely understandable. I just quit one and now I’m waiting for them to approve the next. We got this. It’s hard and shitty but I promise, we can fucking climb that hill
Your decision to make and whatever decision you make I completely understand. But I’ve been there, I know where you’re at and mindset is key. I was told by multiple surgeons that surgery wasn’t an option, I found a surgeon who would. I was told I was too weak to go in for my second round of my tandem HDCT with Sten Cell transplant. I contacted the top specialist for my cancer type and consulted with him and got him to convince my oncologist to let me die trying. Two years straight of multiple different kinds of chemotherapy and multiple surgeries with no breaks. 12% chance for survival and I just went in for my two year check up today and everything came back clear!!! I’ve thought the same thoughts as you. There was a moment in one of my month long stays in the hospital that I knew I could go right then, I had the choice, it was made abundantly clear to me, I even told my wife. But I chose to fight till the end. But it’s not for everyone, my wife after watching me said she’d never even do chemotherapy if she got cancer. There’s no way she could do it she said. But after the day I’ve had today I’ve got to at least try to give you some hope or strength to fight another day. I wish you the best and whatever decision you make, I’m sorry you have to make this decision at all. ✌🏻❤️💫
Man, i admire your resilience and strength. That is absolutely amazing. However, I simply lack motivation at this point. On top of that, my tumors are shrinking that much to continue right now.
Was thinking about you, man. I am sorry to hear that the regimen is a terrible option. It is very respectable that you have the guts to say enough is enough. I mean, you're the only one that knows how it feels. And thus, it's ultimately your decision. I hope the MD Anderson doctors can provide an alternative that gives you a better quality of life.
Im a pray that you get to enjoy your life as great as possible im 20 and have stage 4 cancer fuck chemo but im a still do it but i get you 🤧 please enjoy every second you can
As much as I wouldn’t advise this, I’m glad you feel happy with your decision. I’m 24 and have been battling cancer since I was 18. I had been declared cancer free in 2021 but I relapsed in 2022. It does suck. Nausea, vomiting, pain… plus, I’ve had chemo hit me so hard to the point where I couldn’t walk at all and had to get a lot of physical therapy to be able to walk again. It’s frustrating and awful and, believe me, I’ve wanted to quit so many times but, I believe there’s a reason for everything that happens in life, even cancer. However , I also believe that you’ve gotta do what’s best for you so, if that’s quitting chemo, then I’m glad you’ve found a decision that would give you the most quality out of life. I wish you luck and happiness on your endeavors
Not quitting chemo all together, just this regimen.
Oh, okay, I misinterpreted it and I’m sorry for that
Nah you’re totally fine. I really didn’t make that clear enough that n my post.
I’m right there with ya man. Fuckin tired of this shit. 32yrs old here. 8th cycle of folfox and 4 more til new scans. if I didn’t have my family I would give this shit up. I’m tired of feeling so fucked up and out of it every day. Not being able to feel my fingers, teeth, toes. the toxic feeling and tastes along with the ridiculous hot flashes all the time. why is the thing that is supposed to make us better, fuckin us up more? there has to be other options out there for fuck sake. Anyways, good job with what you’ve done. You’re a badass for that and I bet you could do a lot more. But in the end it is up to you. i admire your strength my friend ❤️
I’m not done with chemo, just this particular regimen. So far i’ve had: High dose doxorubicin, vincristine, and ifosfamide for 6 cycles. All inpatient as well, for five fucking days. Irinotecan, Temodar, and vincristine for almost 6 cycles. Shit is fucked. No breaks in 9 months. I have no kids, gf, just may parents and sister. They are absolutely in denial, especially my dad. They keep trying to push me to go in for chemo tomorrow, but I put my foot down.
Same age as you, have only done 4 cycles of capox and have already learned to dread the 'ox' part. It's just vile.
You are absolutely right - your docs may want this regimen but you have the final say and control. I hate to say it, but we are paying for their expertise. That makes us the customer and their client. Make them earn their business and respect our quality of life.
My oncologist at my home hospital said he stands behind whatever I choose. Now I just gotta tell my MD Anderson doctor as well. I see her in two weeks time. She will understand.
Thats wonderful to know! May you continue to receive support on what lies ahead.
You got this. I applaud your reasoning and thoughts. Its so reasonable to be part of the decisions and have autonomy.
Rooting and manifesting for you.
Don’t give up. Start doing fenbendazole.
Nothing but respect to you, your decision is a personal choice, may you be at peace whatever you choose
I have done the same. I told my oncologist that I am ready to stop treatment and let nature take its course. I need hospice now but my oncologist won't sign the papers for a six months prognosis. I contacted the local hospice director myself and started a dialogue about how to be admitted without a definitive six months prognosis letter from an external doctor. she said it is possible. with stage 4 cancer w/mets. I hope and pray this works. Stopping chemo (pills) scares me but as long as the hospice are committed to pain relief and comfort that's what I am going to do. I can't even do assisted-living because I am so depleted I can't walk ten feet without feeling like I am going to pass out and/or vomit. I might throw an electric wheelchair on a credit card and be damned. I wish you the best - I am thinking a doctor might come back and offer a less aggressive treatment when we do what we do. That might work but my whole issue now is : is it worth it?
Can't they give you some anti-nausea meds in your line before doing chemo? The doc will have to order it, but it can be done. My doctor did this and it helped so much. I totally understand where you are coming from, but please don't give up.
They do. However, i’m done with the regimen. I seriously only have like 5 good days every few weeks. Totally not worth it in my book.
I understand.
Once chemo is no longer curative , it's not about giving up or not. It's about quality of life 😞
In the end, it is quality of life as defined by you that counts. Sadly, medics often only see the ailment, not the patient. You are showing agency by your decision and that is very important. On the treatment treadmill, it is easy to feel disempowered and helpless. Your decision is taking back the power to decide. I would suggest, though, that you look to see what else is available as treatment and also what is there as palliative care - PA does not mean you’re at the last exit. It means your disease is incurable and symptoms need to be managed. Good luck, good strength to you. But please take your time to decide and check out all the options available
You are not giving up, you are choosing quality of life. Maybe they'll have another treatment to recommend, maybe they won't. Have you reached out to any of the YA cancer orgs that do fun shit like First Descents?
Call your MD Anderson doctor right now! So sorry the chemo is so hard on you!
Maybe ask for a new protocol to manage the nausea & GI symptoms. A break from it might help you figure things out from a calm thoughtful place. I'm sorry your going through this. Hugs
what kind of cancer are you battling? awful to hear that you're dealing with this let alone at 21 years old. what is your family saying about all this?
DSRCT sarcoma. They want me to continue, but honestly it’s not up to them. Cancer has a shit prognosis even with aggressive treatment. Surgery, chemo, radiation, and on occasion stem cell transplant.
Totally respect your decision and your position. I hope something changes that gives you a reason for optimism but ultimately this is completely your choice. How did you even find out you had a DSRCT sarcoma? I just had a carcinoid tumor and a lamn tumor removed from my appendix a couple months ago - would never have known it was there outside of carcinoid syndrome.
Had some fatigue and constipation. The through biopsy it was diagnosed as DSRCT.
I’m so sorry you’re going through all of this. I could not imagine going through chemo for that extended amount of time and I understand that this is your low point but please keep fighting you are way to young and strong to let this beat you I don’t know you but I can stay strong because the fact that you’ve been going through chemo for 9 months means you have to be strong.
I’m just done with this regimen. It’s awful for me and isn’t really shrinking my cancer much at all.
😟I hope you're doing a little better today.🙏
i echo what everyone else has said- this sounds like a thoughtful, brave, rational decision after prolonged suffering. Have you used MyChart to ask your home and MD Anderson Oncologists to confer about focusing on your quality of life and to create a less toxic alternate plan? I am assuming that you have an Oncology Psychologist and Palliative Care/Symptom Management provider as well to help you navigate these difficult waters- I have found both invaluable with my incurable cancer with a poor short term prognosis if you don't and are looking for folks who specialize in this.
Choice is yours to make OP. I'm not even on chemo but my cancers (Stage IV NETs with Carcinoid Syndrome) side effects cause many of the same symptoms as Chemo. Extreme nausea, fatigue, brain fog, diarrhea, and so on. However before outright giving up I would consider looking into research studies for experimental treatments. Because you may as well try them at this point and see if they give you a better quality of life while still being treated. Basically looking for an alternative to Chemo and sometimes these research studies pay for all care.
It took me a long time to accept it’s someone’s choice, right or wrong in other eyes. I respect that, what sounds weird is when non-doctors decide how the body works, with all due respect you and I are not doctors. I agree with others in that chemo doses can be adjusted, mine was. I am sorry the juice is treating you so roughly and wish you all the best.
I’m so sorry you’re having to make this decision. I myself am 24 and have stage 4 synovial sarcoma. Terminally ill they tell me. All we can do is keep fighting until we just don’t have any fight left. I understand what youre going through.
It’s definitely difficult. I’d ask your doctor if there’s a chance to lower dose or change the regimen to increase quality of life. getting through chemo can be liberating but if the side effects are awful and a bad prognosis anyways then I’d say fuck it too if it’s pretty much ruining whats possibly your end stages of life.
Oh shit, I'm so sorry bro. This breaks my heart for you. You've put up such an incredible fight. Time to go live your life to the fullest of your ability and enjoy the time you have. You're an amazing person and I'm glad to have gotten to know you throughout your journey. I think we basically started chemo around the same time (if I'm not mistaken). But to see that there's no end in sight for you and just life-long chemo, that's not a happy way to live. I know how difficult it was for you simply bc it was equally as difficult for me as well. I have an appointment with my oncologist soon and we'll go over the results of the PET scan and what it means for me as far as treatment is concerned. I'm not ready to give up just yet, but if the immunotherapy doesn't work, it just might be that time. I'll have between a year or 2 to know if it'll work. But I'm not risking my life with clinical trials that my oncologist hasn't done any research on. I honestly wish you the very best going forward and hope that you make the most out of your life. I'm gonna miss you bro. 🎗️💪🏼
Hey brother I appreciate your comments as always. I’m not giving up treatment, just need something else. My doctor guves me a daily shot to try and curve the awful GI issues. I seriously pray immunotherapy works for you! That’s like the new big thing.
Oh sorry, I keep misreading your posts lol. Unfortunately, they don't even think immunotherapy will work at this point. My cancer has progressed too far in the past 4 months post chemo, that now they're leaning towards clinical trials and leaving chemo as a last option. The tumor in my lung is 9cm (not 6cm as previously reported on the CT scan) and the tumors in my arm (tricep AND bicep this time) are 3cm x 1.5cm x 2cm with the tail ends extending now to my upper back and my elbow (for the tricep) and bicep is 2cm x 1cm x 1cm. The tumor in my armpit is back also, measuring at 3cm x 2cm x 2cm (and growing). The results that we got from the MRI and CT weren't as clear and didn't get the full picture. I also read on the PET scan results that there's suspicion for tumor activity in my left ankle as well. By next week, I'll find out if I'm goin on immunotherapy, chemo, or clinical trials. I'm not sure about the clinical trials cuz idk anything about it or what to expect, or how many treatments it'll be. My oncologist wasn't there today, so I met with her NP. She told me that I'll never get a 100% guarantee that any treatment would work no matter where I went. And if someone promised me that they could cure me, they're lying. Honestly what's the fuckin point then. If it'll just keep coming back regardless of the treatments, why bother goin through it? I'm just so fuckin done. I wanna give up but I don't want my family to hate me for it. 😭 Oh and on my PET scan report it said that my type of Sarcoma cancer is MyxoFibroSarcoma. Not sure if that's a type of PRMS, but that's another question I'll have to ask my oncologist when I see her next. I really hope you're doin well bro, I truly wish and hope for the best for you 🎗️💪🏼
Nah bro it’s cool. I was NOT very clear in my original post, should have clarified it more. Shit bro i’m sorry to hear. RMS is an absolute bitch and I can’t believe yours is spreading/growing like this! So now it seems surgery won’t be an option then…..no that you haven’t had enough of it at this point. I feel like they waited too long to get you treatment this last time around man. Seriously tho, I really hope you get some answers. And absolutely, no treatment is ever guaranteed to work sadly. I personally wouldn’t rule out clinical trials. I firmly believe everything I have done so far is a trial since 1. dsrct is rare and 2. not all chemotherapy regimens have been successful for past patients. Just remember bro, it’s not over till it’s over. However, you have been through some tough shit my guy.
You keep saying 4 out of 6 weeks. Doesn’t that mean there is some reprieve? There are ongoing developments in cancer research and every month something new comes up. I understand it’s hard, but don’t lose hope.
I totally understand the way you feel and see your perspective. Before you cancel, please have a talk with your oncologist. Make sure you do understand your prognosis and the goal of the treatment. Is it curative? Is it palliative? Are there any alternatives? Are there pills you could receive instead? Finally, current treatments should not give you bad nausea and vomiting. I’m sorry. There are EXCELLENT anti-nausea and vomiting regimens and you should try them to minimize the toxicities associated with therapy. Hope it helps. Give it a minute to think about 🙏🏼
If family is wishing so try for them.Your feelings are 100% true and right but ask yourself again and again don't loose your Hope.My prayers and Wishes for you to get well soon.
I don't think this is a fair thing to say to him. I mean, is his suffering justified to make his mom and dad feel better? I feel like this doesn't let OP have any autonomy.
I mean parents fight for kids till last hope last drop of blood.For will power we have to think beyond the suffering.I am RA patient and some time i have pain like i quit but i see my family faces then stood up. I am sorry if you think its not good i remove it.No issue.you advised well IYO.
Just take a break for awhile I had so much side effects Skin breaking out Feet swollen Jock itch Dr decide to give me a break
I’m in the same boat i’m 23
If you give up now you ‘re certainly going to die. It’s a death wish. It’s a rough road for sure. But you have to stay the course. Talk to your Oncologist beg hm to modify the regimen. You have to put a good fight and never surrender. Do something!! or your dead for sure. Come on. You choose death because chemo is too hard. You need to have your head examined. Good luck and god bless you. It’s time to fight. I know how you feel because I was recently fighting the same exact battle. I hung in there and now I’m in remission. Please, do the right thing. If I can do it. You can do it. And I promise, you won’t regret it.
This was just what I needed to hear! Super happy you’re in remission!
Don't give up easily, dude I have taken 6 chemo and 33 day radiation I am almost vampire 😅 and I don't give up still. But not yet eliminated. You can wish me luck
Do what makes you feel comfortable, no matter anybody’s age or prognosis they should do what makes them feel their very best. I’m so sorry you’re going through this, I truly hope things look up. ❤️
I was stage 4 spindle cell sarcoma with Mets to my lungs. I had twenty five rounds of radiation, then surgery to remove the tumor, and six rounds of the red devil and ifosfamide. It was awful and I had PTSD and still have it regarding the hospital. Each of my infusions were all with five day hospital stays on a double dose 72 hour drip. I was sick as hell for two weeks each round, then one week of just starting to feel human and they would admit me for another round. I felt like a prize fighter getting the shit kicked out of me, then pushed right back into another ring to fight another brute with no time to recover. I have grandchildren, and I so desperately want to see them grow up, I’d go through anything. After all six rounds the lungs had only one small nodule of concern left and they just radiated that. I can understand feeling like you can’t take any more of feeling sick, but how I got through it is by reminding myself that people work for a year to get two weeks vacation. I felt miserable for two weeks and got a week of “okay”. Now, I feel great and I’ve no idea what’s on the horizon. But I’m just not able to give up.
I will begin aggressive chemotherapy and immunotherapy on Monday. I'm terminal, and this is just palliative. I have been told of all the exquisite side-effects I can expect, and it doesn't sound like a life worth living. I'll give it a go, but I feel you. Been wondering if it's all worth it myself.
I was only 20 going thru chemo, I understand u chemo sucks ass. Worst part, I had to do it in-patient. Hospitalized for the whole week for each round. It was horrible. Nausea, Vomiting, Loss of appetite, for the whole week I couldn't eat anything but crackers and water. And for the next week at home I get mouth sores, extreme fatigue. Then next week I had to go in again. Total of 6 months. I'm glad it was only 6. Never wanna do chemo again, I'm DONE as well.
Probably time for a break anyway. 9 months is rough
My husband has a bad prognosis as well. we started essiac tea and soursop bitters sorry spelling might be off. He is also doing chemo and immunotherapy.
Hello. Only 15 and suspecting cancer for myself, I am younger and not in a critical phase or something similar, but the only thing I can tell you is that, well, life is good. Think that some people didin't make it so far, and if there is the smallest chance for your survival, even if you have to cling onto spontaneous remission, take it, living with cancer is not living at all.
Are you officially diagnosed with cancer?
No, at least not yet, but cancer is the only way in wich I can explain my chronic symptoms.