How many people don't finish their chemo regimen?

I managed to make it through FOLFOX and 5FU for nine treatments, but when I did the six weeks continuous 5FU, my neuropathy got so bad that my Doctor quit it at five weeks. 

I wanted to stop the last six days of radiatoin, but my Rad Onc would not let me. 

It is a hard decision and one not to be taken lightly. It could mean the difference between life and death.  Did my I get my liver met because I didn't do six full weeks of 5FU? I will never know of course, but it does flit through my mind every now and again. 

Good luck making your decision. 

Sue - Trubrit

Have you discussed this with your doctor and asked them if they could reduce the amount you get at treatment.  Sometimes this can help immensley.  Also, there are other meds they can give you if you feel sick.  I'm sorry that it's so hard on you.  Feeling like that during treatment only makes things seem worse.  Please talk to your doctor.

Kim

     I know it's different for everybody. I started chemotherapy Fcu5 four weeks after surgery.  My oncologist made us take a class which informed us of all the possible side effects. I went into chemotherapy feeling informed. I joined this group and found out I really didn't know the information from the patients side. I asked lots of questions and I think it made the sick feeling more tolerable. I did 10 of the 12 treatments. We decided to stop the treatment because of the neuropathy. I was prepared for the cold sensation. That was part of the introduction to oxy. The neuropathy is pain and tingling hands and feet constantly. I'm still feeling those effects 10 weeks after I stopped. My doctor and I made the decision together because of the concern regarding the quality of life. I didn't feel the best when I was doing treatment but I kept pushing forward until it felt impossible. I think you need to discuss your health with your oncologist and make decisions accordingly. I do also worry if I should have finished the remaining 2 cycles. Only time will tell. 

Yolanda

ron50 said:

I had chemo IE an infusion of 5fu via canula

 In the back of alternating hands every week for 48 weeks.Every second week it was enhanced with 9 tablets ,three a day for three days after 5fu, of a drug called levamisole. It was a weight related dose. Too much levamisole killed you, too little did nothing ,just right , well I am still alive sixteen years later. My Oncologist was worried towards the end that chemo was having a bad physical and psychological effect on me and suggested we stop. I just said if it comes back I will always wonder so lets just do it. We did. Ron.

Hi, Jan. I can't remember whether you are a stage III or IV.   If you're a III, the chemo could save your life. If you're a IV, especialy an advanced IV, well.. it's going to buy you time but that's about all, unless you're one of the few and very fortunate.

This board is a great cheering section.  If you're a III and just need encouragement through some tough times, I'm sure several of us will step up and say "Go, Jan!" every week if that would help you stay on it.  Many people, especially IIIs, post a countdown of their treatments after each one, and when the rest of us are able, we cheer and offer encouragement.  

If you're truly miserable and just can't continue, I suggest you talk to your onc about a break, or even switching chemo.  The are about, what, five, six, possible MCRC drugs we can have, and several cocktails. I think I've taken most of them and not all have awful side effects. They're not great but everybody responds differently, and maybe you can find one that works well for you and doesn't affect you much, or causes side effects you can deal with.   

I did the full 12 of Folfox and then the onc stopped it.  Another doc I saw asked why he didn't continue, since it really really worked, and I didn't ask or know.  I had the cold sensitivity (luckily I had started in the summer so ended o/a January) and didn't get the neuropathy until my last treatment which made me unable to put on earrings and do fine motor work. Nearly two years out, I'm fine. No residual oxy damage, full functionality restored in my hands.  But no way do I have Winter Marie's tolerance for the stuff!  What an oxy superhero! I'm picturing her strapped to a chair, ala Game of Thrones, being infused by poison, and then screaming and writhing, sweating, turning all colors, clenching her fists, and then returning to normal, tossing her head back and saying to a crowd of onlookers - "it was nothing, just a flesh wound - hit me again." Not me, man.  Other chemos were stopped by the onc when they didn't work (CEA went up, scans showed progression ;-(, but then, I'm a IV.)

Good luck - (go Jan, go Jan, go, go, go, go Jan...)

Karin

My brother is stage 4, started as stage 2a. He had to stop a few times because of hospitalizations and also because his heart was too weak for the 5-fu. He is only on irintoecan right now. He's on a low dose and his onc will raise the dose if he does well on it. Make sure your heart function is monitored. My brother's heart was affected by the chemo he had in 2000 for non hodgkins lymphoma, as well as from 5-fu and a couple of other chemo meds he was on. He's had a rough time. Right now they are treating him to try to slow down the growth of cancer, so they're trying to extend his life. Good luck. I can't say what I'd do because I'm not in your position, but I hope you're able to figure things out.

Lin

lilacbrroller said:

Go! Go! Go!

Hi, Jan. I can't remember whether you are a stage III or IV.   If you're a III, the chemo could save your life. If you're a IV, especialy an advanced IV, well.. it's going to buy you time but that's about all, unless you're one of the few and very fortunate.

This board is a great cheering section.  If you're a III and just need encouragement through some tough times, I'm sure several of us will step up and say "Go, Jan!" every week if that would help you stay on it.  Many people, especially IIIs, post a countdown of their treatments after each one, and when the rest of us are able, we cheer and offer encouragement.  

If you're truly miserable and just can't continue, I suggest you talk to your onc about a break, or even switching chemo.  The are about, what, five, six, possible MCRC drugs we can have, and several cocktails. I think I've taken most of them and not all have awful side effects. They're not great but everybody responds differently, and maybe you can find one that works well for you and doesn't affect you much, or causes side effects you can deal with.   

I did the full 12 of Folfox and then the onc stopped it.  Another doc I saw asked why he didn't continue, since it really really worked, and I didn't ask or know.  I had the cold sensitivity (luckily I had started in the summer so ended o/a January) and didn't get the neuropathy until my last treatment which made me unable to put on earrings and do fine motor work. Nearly two years out, I'm fine. No residual oxy damage, full functionality restored in my hands.  But no way do I have Winter Marie's tolerance for the stuff!  What an oxy superhero! I'm picturing her strapped to a chair, ala Game of Thrones, being infused by poison, and then screaming and writhing, sweating, turning all colors, clenching her fists, and then returning to normal, tossing her head back and saying to a crowd of onlookers - "it was nothing, just a flesh wound - hit me again." Not me, man.  Other chemos were stopped by the onc when they didn't work (CEA went up, scans showed progression ;-(, but then, I'm a IV.)

Good luck - (go Jan, go Jan, go, go, go, go Jan...)

 

Karin

See Karin, no turning colors, just clenched fist in boxing gloves.  My daughter sent that to me, with the words Keep up the Fight Mom.

AND IT's hard it isn't easy and Jan you seem to have gotten the worst of everything.  Keep trying dear, it will hopefully get much better.

Winter Marie

However, they stated up front that they would never know if the chemo was beneficial to me.  The known problems far outweighed the questionable benefits in my case (and my neuropathy, while now mild, is permanent, and 6 years post-chemo is getting worse.)

It's a very personal decision.  In some parts of the world, 6 or 8 cycles of Folfox is considered the norm, not 12.  Discuss with your dr and then decide.  Quality of life cannot be overstated.

Alice

There is little clinical evidence that 6 tretments or 12 treatments is better.   If you are responding to the treatments then they are working!  Do what your body tells you is right.  I was scheduled for 12 treatments and have done 14, but am finally seeing great results.

Best ALways,  mike

JanJan63 said:

Thanks again everyone. This

Thanks again everyone. This is the best place to talk about this, you're all wonderful.

How do you know if you're seeing good results? I was almost back to normal before I started this round of chemo, I just got tired easily. Now I can barely function and feel like crap. Can I only get an answer by asking for my CEA?

My understanding is that my onc will have put my information into a computer program and it tells her what it thinks the ideal number of treatments is. Of course, I had to start a month later than they wanted after my surgery because my incision opened up. Before I started I asked her if that would make a difference and she was very casual about it and said she 'still thinks it's worth doing'. So I really have no faith in if it's doing anything for me. Did I miss my window of opportunity because it was so long before the chemo? Am I totally wasting my time doing this?

I go for chemo number five today and I've been upset and stressed all weekend. I hardly slept last night. Three more to go after this if I complete it. It's really bugging me that Christmas will be ruined.

I feel so bad because I know many of you have experienced far more than I have but I'm just so upset about doing this and not knowing if it's actually worth it. And I'm angry that I ended up stage 3. I went to the doctor for this in May of 2013 and they did an ultrasound but didn't look low enough to see anything. Then I was referred to the doctor that did the colonoscopy and he barely touched my stomach and said he figured it was just my IBS. I didn't get in for the colonoscopy until Dec 23 and that was only because my family doctor was pushing to have it moved up. I can't help but wonder at what point I could have been treated less invasively. By the time they figured it out I had to have chemo and radiation because the tumour was so big. And an ostomy first because it had completely blocked my colon. The tumour had torn my colon and I had three lymph nodes involved. Would six months earlier have put me in a stage two? And I wouldn't have had to have the chemo and radiation? I feel let down by the system and have lost faith in some doctors. And my onc is wishy washy and does not inspire confidence.

Jan

Tell youself its only two more after the next one. I know it sounds silly, but that is what I did with radiation. I jumped ahead to make it sound better. The mind is a funny thing. Yeah, tell yourself 'only two more after the next one'. 

Don't fret about your CEA now. Wait until you're finished (and you are going to finish) and then ask your Onc for a CEA draw. Ask the facility (hospital, wherever you go for your blood draw) how long before they get the results (my blood gets sent to Texas and takes two days), then go back in and request your results. You don't have to wait for the Oncologist appointment. 

I have read many of my results before the Oncologist even gets them. 

Once your treatment is over (and its only two after then next one), you should be scheduled for a CT scan. 

Gird yourself up my friend, you can do this. 

As for Christmas, can you get someone to decorate your bedroom? Put your tree in there, put up the Christmas cards in there. Make the room you spend the most time in, your Christmas room.  Ask family to help with a Christmas dinner, even if its just soup. Call it a Christmas soup, or aif you can only eat certain things, call them Christmas food. Like I said before, the mind is an interesting organ, and you can make it believe whatever.

Last night, when I couldn't sleep, I laid their and pretended I was an Elf in Lothlorien (I've been reading and watching Lord of the Rings). It soothed me to sleep, and even though it took me a while, it was very pleasant while  . 

Do what it takes to make it through if you can. 

Really, just two more after the next one. You can do it. We're beside you all the way. 

Sue - Trubrit