Don't Want Anymore Chemo..

I'm having a hard time.  I've just done my 9th round of chemo, broke out in hives for the first time, have intense muscle pain in my neck and shoulders, have extremely cold feet (in more ways that one) and I just don't want to do my next 3 rounds.  I also am doing neupogen so it's chemo one week, plus sick in bed for about 4-5 days feel like crap today and now I have to start injecting neupogen in afew days and will have bone pain from that.  I'm having more bad days than good now and I'm fighting this in my head that I don't want to do this anymore!!!  I've been crying most of the day contemplating on calling my onc. and calling it quits.  I ponder the thought of continueing to a point where they're going to say STOP anyhow cause it's causing more bad than good.....but what if  I need those last few cycles......????  I'm sick and tired of being sick and tired!!!   I've never had anxiety about going for chemo before, but when I broke out in hives and the way the benadryl knocked me out....hey....I didn't like it one bit and now Ive got so much anxiety over this, I don't know what to do.   Has anyone decided to stop their own treatment>?  Has anyone experienced the aching muscles in neck and shoulders and back???  Where is this coming from???       Anna

Hello, I want to write to let you know that my mother is just finishing her 6th folfox chemo session, her oncologist wants her to do 12 treatments, but a 2nd opinion doctor said he'd be happy if she was able to do 6. (she was diagnosed late Nov '07 with Stage 3 colon cancer, had surgery, 4 out of 24 lymphnodes cancerous). I've read alot about this and talked to alot of people, it seems that most people try to get through as many treatments as possible or recommended, but once it gets to be too much then it's too much (where the side effects outweight the benefits). I think you should talk to your Oncologist, I know my mom was filled with anxiety and upset and depressed 2 weeks ago after her 5th chemo (she got very naeseous) and she SO wanted to call it quits. We encouraged her to wait a week and then TALK to her doctor. They reduced the dosage by about 25%, they can do that, so you should talk to your Doctor. Most people have to have the dosage adjusted for their body, it might be worth asking your Dr. if the dosage can be reduced a bit to alleviate some of the side effects but still get the benefits of the chemo. Also, sometimes if you're really feeling bad they can give you a week more off between treatements. I would encourage you to TELL your doctor all your side effects, they need to know and then they can help make a decision and/or present you with alternatives like lowering the dosage. Talk it out, take it one treatment at a time, and don't suffer in silence, talk to the Doctor. Best Wishes and Hang in there, take it easy, breathe, one day at a time...

Anna,

I had sever muscle cramping/spasms in my back, chest and abdomen often when I lied down and sometimes when I sat down.  I recently finished my last treatment (#13) and the cramping/spasms have gone away.

I have heard that it is common to develop an allergy to oxaliplatin. I am not sure if that is where the hives were coming from, but I started to get a fever and chills towards the end of my treatment of oxaliplatin.  Perhaps they can either reduce the dose or give you an antihistamine (such as Benadryl).

Take courage going into the last three treatments.   I think in the long run you will be glad you did.   God bless.

Andy in Tucson

Hi  I'm Folfox, etc and have 3 more to go.  I had a recurrence in Oct Last year and had surgery which did not accomplsh what we nedded to do.  I had radiation and oral chemo in Dec last year.  It seemed to do the trick and now the plan is for Folfox, etc. to kill any remaining microscopic cells that are left.  Do the last three if you have to stand on your head!!  It could prevent recurrence and you don't want to go what I have had to endure the 4 months.  Good luck.

My mom had colon cancer that spread to her lungs and her liver. She was doing rounds of chemo that were eight hours on Tuesday then she would go home with a "chemo bag" Tuesday and have it until Thursday when she would do another eight hour day. This would happen every other week. Then she moved to a stronger chemo that was once a week every week and she was so sick. By the time she was feeling a little better she was back in there getting chemo again. She decided to stop her treatment and talked to my brother and I about it. She just wanted to feel good and was tired of taking medicine for the constipation then taking another medication because the last one gave her headaches. She just wanted to enjoy her life and I always told her "I'd rather have you around 3 months of you feeling good and being yourself then 6 months with you sick in bed and just down." I don't know if that helps or not.

Having chemo or not is an individual choice.  However, being in bed for 6 months with the possibility of coming up NED still facing you is the more important point, I think.  The life after potential remission possibility is something to think about.

 

On 4/14/2008 Annie59 wrote:

I'm having a hard time.  I've just done my 9th round of chemo, broke out in hives for the first time, have intense muscle pain in my neck and shoulders, have extremely cold feet (in more ways that one) and I just don't want to do my next 3 rounds.  I also am doing neupogen so it's chemo one week, plus sick in bed for about 4-5 days feel like crap today and now I have to start injecting neupogen in afew days and will have bone pain from that.  I'm having more bad days than good now and I'm fighting this in my head that I don't want to do this anymore!!!  I've been crying most of the day contemplating on calling my onc. and calling it quits.  I ponder the thought of continueing to a point where they're going to say STOP anyhow cause it's causing more bad than good.....but what if  I need those last few cycles......????  I'm sick and tired of being sick and tired!!!   I've never had anxiety about going for chemo before, but when I broke out in hives and the way the benadryl knocked me out....hey....I didn't like it one bit and now Ive got so much anxiety over this, I don't know what to do.   Has anyone decided to stop their own treatment>?  Has anyone experienced the aching muscles in neck and shoulders and back???  Where is this coming from???       Anna

Hi Anna, My name is Mariann. I have been a Cancer survivor for almost 3 years, I was diagnosed with Lung cancer in Nov of 03 they removed a section of my Lung and I was told that due to early stages not really even a 1 that I did not need any chemo or other treatment, 13 months later I developed Adrenal gland Cancer and had it removed, again I was told no chemo, in a way I was relieved but also scared because I thought maybe if they had given me chemo the first time I would not have had a reacurrence ( God's will not mine)..Anyhow I have seen and heard so many different aspects about chemo that for me if it ever comes down to taking it, I would really have to pray hard because like you I want to live what life I am blessed with feeling the best I can for how ever long that would be. I know that we as Cancer patients deal with all the emotional junk that goes along with the big C, is it comming back, when is it comming, how do I live each day without fear, feeling stuck in a rut of wanting to move forward but afraid that we may not have the chance to fulfill our dreams, I too like you get tired of being sick and tired..so for me step by step breath by breath I just keep going one day at a time, and thanking the Lord for what he has blessed me with LIFE, I am still here. Anna, talk to your Doctor, talk to a friend, to your family,talk to God, fighting Cancer how ever you choose to do it is your decision. I also have anxiety, every three months I go in for test ie, IV starts with no veins insight, it takes them at least 5 trys to hit a vein and I get so disgusted with the whole process that I want to run to cry to just give up, but somehow I get thru it, and I know you will to. I wish for you strenght, hope,faith, and endurance, I will keep you in my prayers..Stay strong.

 

On 4/14/2008 Annie59 wrote:

I'm having a hard time.  I've just done my 9th round of chemo, broke out in hives for the first time, have intense muscle pain in my neck and shoulders, have extremely cold feet (in more ways that one) and I just don't want to do my next 3 rounds.  I also am doing neupogen so it's chemo one week, plus sick in bed for about 4-5 days feel like crap today and now I have to start injecting neupogen in afew days and will have bone pain from that.  I'm having more bad days than good now and I'm fighting this in my head that I don't want to do this anymore!!!  I've been crying most of the day contemplating on calling my onc. and calling it quits.  I ponder the thought of continueing to a point where they're going to say STOP anyhow cause it's causing more bad than good.....but what if  I need those last few cycles......????  I'm sick and tired of being sick and tired!!!   I've never had anxiety about going for chemo before, but when I broke out in hives and the way the benadryl knocked me out....hey....I didn't like it one bit and now Ive got so much anxiety over this, I don't know what to do.   Has anyone decided to stop their own treatment>?  Has anyone experienced the aching muscles in neck and shoulders and back???  Where is this coming from???       Anna

I agree with the post that says to have chemo or not is a choice you have to make.  I was diagnosed with stage 4 colon cancer November of 2003.

First time around I did 10 months of chemo with two delays.  My first chemo my liver wanted to give up, but after a week and some steroids it was functioning normally.  Then I had a blood clot in my calf, which delayed treatment for a couple of weeks.  I went into remission in December of 2004 but it was short lived and a tumor reappeared in my abdomen which was detected by a petscan in early 2006. So had surgery removed the tumor in march of 2006 only to have another grow back in same area two month later.  I've been on chemo this time around since july of 2006.  I have chemo every week and I look like the acne kid and share those same back and bone pains you experience but mine is from the tumor and my by weekly neulasta injections.

 I've had every side effect you can imagine other than those that are fatal.  

 I only mention what I've been through to let you know despite the side effects etc. You can continue on chemo and learn to live with the side effects. Also as mentioned in other posts, talk to your doctor, they don't want you to suffer so they can do all the things mentioned, change dosage, add other drugs to fight the side effects you are having, and change the frequency of the treatments.  If you can and want to fight I've found it is usually best to try to do the treatments as scheduled. 

I know this may sound odd but I've found walking on a treadmill reduces my back and bone pain from the neulasta shots and also from the tumor that is in the lower left side of my back but unfortunately too close to a major artery to treat with anything other than chemo or surgery and since it keeps growing back surgery isn't much of an option.

I've pretty much had every drug they have for colon cancer and understand your pain and feeling of wanting to stop treatment.  

Trying to do what you normally do fighting the pain and anxiety also helps me.  Along with pain medication of oxycodone and I also take adavan which is both for nausea and anxiety.  It's pretty much the only drug that worked for me on the nausea side effect.  Well other than Marinol if legal in your state it works good on the side effects of pain and nausea but puts a dent in your food budget as it makes you want to eat everything in sight and gives you urges to watch cheech and chong movies. :)

One of the first people I met after having my colonectomy was a woman who had been fighthing recurring cancer for 13 yrs. Not one to normally believe in fate, I now think it was fate that I met her.  She told me she had fought this disease for 13yrs and after her most recent surgery she decided that was it for her, either it cured her or she was letting the disease run it's course.  She told me when you can no longer do anything you enjoy you aren't really living and that she was no longer living.  She'd continued to fight for some of the years for her husband. I do the same for my teenage daughters, but also because I believe I can beat the disease and refuse to let it win without as much fight as I have in me.

 I never seen that woman again, but I always keep what she told me in mind.  Although my life isn't quite what it used to be I still find the side effects and treatments still outweigh the alternative so I choose to continue to fight.  I try to keep a positive attitude and find something good out of the bad.  

 I know all of us responding to your message and even those who have never read it would want you to fight because you are so early in treatment you have a better chance of recovery if you complete your treatments.  That and every survivor is an inspiration to those who still fight the battle. Having said that I revert to my first part of the message that it is a decision that can only be made by you because only you know what is best for you and what you want for what remains of your life whether it be 6 months or 20 years.  

Also consult your physician they can make it less painful. 

Good luck in whatever choice you make. My thoughts and prayers will be with you.

 

PS.  The rambling messages are a side effect I have, I blame it on the chemo :)   

dear stevor1955,  thank you so much for your words and thoughts.  I did speak with my oncologist and asked his opinion about me stopping treatments---he said it was' fine' that my allergic reaction would prob. continue and that it could become 'dangerous'... well, that helped me make this decision,   also my doc said that at this point the chemo either has done it;s job or hasn't.......?????    Today. now, when I'm having a good day I start to question myself.....man.....it's such a struggle....I know others ,  YOU, have been through so much more than me and have endured so much more suffering that I 'm feeling like a 'baby' for stopping chemo but I'm also afraid of how much harder it is now for me to recover from treatment.  What's so wrong with stopping now,  having some tests done now and checking out where I stand???????   If they find something..... so I start over again....at least in afew weeks I will be stronger emotionally and physically but I'm not strong for another chemo next week after breaking out in hives and it taking me afew days longer to recover.     All I can do now is hope and pray for the best, try to be good to myself,and I need to be strong and accept the decision I made. and do my best to carry on.                             Anna

hi mariann,  thank you for your support.   I know that in the end it is my decision and I have to live with that.  I just feel that I've had surgery to remove the tumour and lymph nodes and the chemo is the 'preventative measure'  I know it's 'c' and it can come back anytime it feels like it, but I also know that I can't go in that room on Tue. for another round because now I have sooo much fear and anxiety after getting hives last week.   'to do or not to do'...yes, even tho I've made my decision, today when I'm feeling good I am still struggling with it.  I can only hope and pray that I've made the right choice because I have to live with it.  My husband supports my decision, my kids are upset.... and that bothers me  I don't want them to be scared.  They know cancer......it has already taken away my first born son 22 yrs. ago at the age of 2.....I know cancer......we all know what it is capable of...................Anna