How do you know when your last treatment will be?

bdee

My onc doctor won't give me a time line for how long I'll have to go through chemo. He told my husband, without me being in the room, that he's counting on this going on for two or three more years. I don't know if I can go through that. How many of you were given a specific number of treatments you would go through?

Thanks,
Debbie

Sundanceh

Hi, Debbie
I was on Oxaliplatin and was initially told 12 treatments over 6 months. Doctor told me that no one in the clinic had ever made it through that far, due to the toxicity and side effects of this particular chemo drug.

I made 7 or 8 of those treatments before we stopped and switched to Xeloda and Avastin.

And my body let me down and I was unable to do them every 2 weeks as he wanted to do, the more I did, the longer it took to recover to do them again.

It will depend on your blood platelet count as to when they will allow you to do a treatment. If they get too low, they will not do it. Ideally, they want your count at 100,000 but if it's a little bit lower, they may still do it.

There is a new drug out now called Nplate, that boosts platelet counts so that chemo can be done.

My doc took me off the Oxaliplatin because we could not stay in schedule, and that drug is so toxic that each time you take it, could cause permanent side effects, so we discontinued.

Hope this helps you.

-Craig

tiny one

treatment end
I had stage 3 colon cancer, with 1 lymph node testing positive. I had a resection a temporary ileostomy. I received 5 1/2 wks of chemo and radiation. I had a mediport so chemo was 24/7. I thought I was done but my oncologist wanted me to do 6 months of chemo. I had oxiplatin twice a month. I would have to sit for about 2 hours receiving chemo and then they would put the pump on me and it would be taken off in 2 days. I tolerated oxi very well. After 12 rounds of chemo I was done. It depends on what stage your cancer is, how well you respond to treatment and what your oncologist thinks will be the best course of treatment. Some people are on chemo for a long time. See if you can get some straight answers from your Doctor.

kimby

end date
Debbie,

I'm hoping for 30 years! We fully expect that I'll be on some sort of chemo until I exhaust all options. I'm on my last available cocktail now and one of the drugs is actually for anal canzer, not colon. There are 2 other drugs (that I know of) in phase III trials but available under 'compassionate care' if you've exhausted everything else. I hope to never need those but it's good to know I have options.
I rejoice in chemo, if not in all the side effects. Stopping is not an option. I feel fortunate to have ANY chemo drugs still available. I will continue on and have fun with it the best I can. I've made it a game of sorts. 10 years ago there was one chemo available to us - 5FU/Leucovorin. We have so much more hope now. All these new cocktails have given us more time. What more do any of us want but hope and time?
I'm not minimizing your concerns. Long-term chemo is difficult at best. Dosages can be adjusted along with drip times and time between infusions, all to improve quality of life along the way. We all (as stage IV's) need to consider quality/quantity of life issues everyday. I try not to think of "the end" of treatment because, for me, it may mean "the end".


Kimby

lmliess

kimby said:

end date
Debbie,

I'm hoping for 30 years! We fully expect that I'll be on some sort of chemo until I exhaust all options. I'm on my last available cocktail now and one of the drugs is actually for anal canzer, not colon. There are 2 other drugs (that I know of) in phase III trials but available under 'compassionate care' if you've exhausted everything else. I hope to never need those but it's good to know I have options.
I rejoice in chemo, if not in all the side effects. Stopping is not an option. I feel fortunate to have ANY chemo drugs still available. I will continue on and have fun with it the best I can. I've made it a game of sorts. 10 years ago there was one chemo available to us - 5FU/Leucovorin. We have so much more hope now. All these new cocktails have given us more time. What more do any of us want but hope and time?
I'm not minimizing your concerns. Long-term chemo is difficult at best. Dosages can be adjusted along with drip times and time between infusions, all to improve quality of life along the way. We all (as stage IV's) need to consider quality/quantity of life issues everyday. I try not to think of "the end" of treatment because, for me, it may mean "the end".


Kimby

Great reply Kimby!
That is true - we have so many more options these days than 5 - 10 years ago. I keep thinking 'what if this crap comes back', but if it does, thank God we have medicine to fight it. I hate being on this mop up chemo, I wish the dr's were to just say 'hey you are surgically NED' go abbout your business. But I am on this (I hope) last round of chemo - only 6 more left - BUT if a scan picks something up down the round, I know we can get it. I know as Stage IV, I will have to be watched very closely for a long time.....but time is what I want!!!

Linda

Betsydoglover

Debbie -
I assume you are
Debbie -

I assume you are Stage IV - in which case you don't actually know, but the 30 year reply sounds good to me! (And you may well get some significant breaks...........)

I was diagnosed in Stage IV 5/05 - sigmoid colectomy in 6/05, liver met, then 6 cycles of oxaliplatin/Xeloda/Avastin. At that time we never expected for me to go off chemo for any significant amount of time. But I took a break after 6 cycles (11/05) - we expected that break to be about 3 months, but I was NED with many scans until 11/08 - so 3 years without chemo. I had a lung nodule removed in mid-April 2009 and am currently on Xeloda & Avastin (2nd cycle). Theoretically NED again, although we know there is stuff running around. THe current plan is 6 cycles of Xeloda plus Avastin for at least a year - we'll see - scans after cycle 3 in mid July.

So, chemo forever is a model, but chemo with breaks and then continuing is a more likely model. One day - one scan - at a time..............

Take care,

Betsy
diagnosed 5/05, Stage IV
sigmoid coloectomy 6/05
6 cycles Xeloda/oxaliplatin/Avastin - 7/05-=12/05
NED from 8/05 - 11/08
Tiny lung nodule removed via VATS mid April '09
Currently on Xeloda and Avastin

PhillieG

How Many More Times....
Like the old Led Zeppelin song.

Hi Debbie. I'm being blunt here, this is MY experience and/or how I see things having dealt with this for over 5 years.
Well, there are 3 options as I see it.
1- You are on chemo until the cancer is gone or stable without being on chemo
2- You say "I've had enough" and it stops
3- You die

Option 1 is what I am working with. I have been on chemo pretty much continuous for over 5 years. I'm still here, it's a PITA at times but it is VERY unlikely that it will be 2-3-4 years of the intense chemo that most of us start out on. I am down to one med, Erbitux going every other month on a trial basis. I get scanned and results in early August. I just had a refill today and I am planning on have a great rest of June with swimming and kayaking, then a week at the NJ Shore in Ocean City in mid July, then get a ST scan and see what's next. I hope it's more every other month, I can do that forever (and I probably will) but if stuff starts to go on the move again, then it's Plan B, whatever that is. There are folks out there who did only 12 treatments because it killed all their cancer. I feel in many ways though that I am much luckier than them for certain procedures that I did not have to deal with.
I hope I wasn't offensive, I just got back from the city and chemo and I'm cranky and tired and have to cook and uncrank myself.

It really isn't that bad at all Debbie, it beats the alternative and they are always coming up with new trials and medications. Consider yourself blessed in a way.
-phil

bdee

Betsydoglover said:

Debbie -
I assume you are
Debbie -

I assume you are Stage IV - in which case you don't actually know, but the 30 year reply sounds good to me! (And you may well get some significant breaks...........)

I was diagnosed in Stage IV 5/05 - sigmoid colectomy in 6/05, liver met, then 6 cycles of oxaliplatin/Xeloda/Avastin. At that time we never expected for me to go off chemo for any significant amount of time. But I took a break after 6 cycles (11/05) - we expected that break to be about 3 months, but I was NED with many scans until 11/08 - so 3 years without chemo. I had a lung nodule removed in mid-April 2009 and am currently on Xeloda & Avastin (2nd cycle). Theoretically NED again, although we know there is stuff running around. THe current plan is 6 cycles of Xeloda plus Avastin for at least a year - we'll see - scans after cycle 3 in mid July.

So, chemo forever is a model, but chemo with breaks and then continuing is a more likely model. One day - one scan - at a time..............

Take care,

Betsy
diagnosed 5/05, Stage IV
sigmoid coloectomy 6/05
6 cycles Xeloda/oxaliplatin/Avastin - 7/05-=12/05
NED from 8/05 - 11/08
Tiny lung nodule removed via VATS mid April '09
Currently on Xeloda and Avastin

Thanks for all your answers
I guess I'm frustrated that my doctor will not commit to ANYTHING. He says he's going to do a monthly CEA - but he doesn't. He says he's going to do CTs every three months - but he doesn't. I don't want to change doctors, to me that's too scary to go to someone who doesn't know my experiences from the very first. I just wish my doctor would do what he says and give me an idea of how long this is going on. I think if he did CTs every three months it would tell us more, but I may be wrong about that too.

Thanks a lot for everyone's answers. I guess I'm on chemo until I'm not. The doctor knows best - I hope!!

Debbie

PhillieG

bdee said:

Thanks for all your answers
I guess I'm frustrated that my doctor will not commit to ANYTHING. He says he's going to do a monthly CEA - but he doesn't. He says he's going to do CTs every three months - but he doesn't. I don't want to change doctors, to me that's too scary to go to someone who doesn't know my experiences from the very first. I just wish my doctor would do what he says and give me an idea of how long this is going on. I think if he did CTs every three months it would tell us more, but I may be wrong about that too.

Thanks a lot for everyone's answers. I guess I'm on chemo until I'm not. The doctor knows best - I hope!!

Debbie

Know what time it is?
I think it's time to get a new set of Doctors. It's YOUR health, it should not be treated as it is an inconvenience to him. What would SCARE me more than a new doctor is an incompetent doctor or one that does NOT take scans like he SHOULD and says he WILL. I get scans every 2 months. I would not trust anything this doctor tells you since his word seems to mean nothing at all.

This is only MY opinion, but I would RUN to another doctor. That guy sounds incompetent to me.
-phil

Sundanceh

bdee said:

Thanks for all your answers
I guess I'm frustrated that my doctor will not commit to ANYTHING. He says he's going to do a monthly CEA - but he doesn't. He says he's going to do CTs every three months - but he doesn't. I don't want to change doctors, to me that's too scary to go to someone who doesn't know my experiences from the very first. I just wish my doctor would do what he says and give me an idea of how long this is going on. I think if he did CTs every three months it would tell us more, but I may be wrong about that too.

Thanks a lot for everyone's answers. I guess I'm on chemo until I'm not. The doctor knows best - I hope!!

Debbie

New Doctor and 2nd Opionion?
Hi, Debbie

I just had to stop in and tell you something after reading your post and you can take it for what its worth, but it happened to me and since we're all sharing, buckle your seatbelt and here we go....

I've been seeing my oncologist for a little over 5 years now. During that time, I thought we had built a good, solid relationship. I'll cut through the 5 years and just focus on the last 2 weeks, which has changed me and left me wondering...

My onc told me I had to have a P.E.T. scan after the CT revealed a spot on the pleura of my lung - metastatic colorectal to liver and possibly to lung. This year the insurance is acting funny and wants their 25% co-pay right up front before they do the work. This resulted in about $800 bucks out of my pocket - I had told him how many medical bills I had and that I was stretched to the limit, but he said we "had" to have it.

The results were that the first spot did not show uptake from the scan - but by the way, there is a new spot that did. I also had this huge red spot and some hard bony stuff sticking out of my ribs and I talked about that on more than one occasion over an 18 month period - his response was don't worry about that, you've got bigger problems. I thought "lumps" were a problem, silly me. His suggestion was a needle biopsy right away. He said it was not curable, only treatable. At first, he had told me no radiation, and then told me we would radiate the area. From the posts, I've seen here, I'm not going to do that, because it could hit my heart and I've read where trouble really starts there. So, we came up very bewildered and had more questions than we came in. And he just could not really commit to what was the best course. I've been through general radiation and CyberKnife radiation, so I know a little about those and their effects. You just don't do it if you don't have too, especially knowing what I do now. We told him we were going for a 2nd opinion.

It gets a little scary here...the new onc, who did not know me and just reviwewed my records, contradicted most of what my original onc said. He told me the spots on the pleura could be curable with a thoractomy (chest surgery)...and guess what, he did not recommend radiation either. He also told me the big bulge in my ribs was probably not a tumor, but could have been caused from the "needle biopsy" that I had on my liver before my RFA. Amazing!

My doctors had me routinely doing CEA's and CT's, but the new onc said, just having the liver surgery alone could raise the CEA levels, and that this hopsital did not treat according to numbers, where my old onc treated me strictly by numbers.

He even went as far as to me the latest CT I had that showed spots on my pleura was really not the right scan to do for that even - he recommended an MRI, because that is a better scan for the location of these spots. The old onc had an MRI machine at his place and I've been it before - why did he not recommend now?

Bottom line, there was enough information given to me that had made me wonder about how I was treated these past 5 years and that I may be really lucky to be here and write to you today.

Since January, when the economy tanked, my cancer center looks like a ghost town, infusion is empty, blood labs are empty, and the parking lot is empty, and half the staff laid off. It's because people cannot pay their co-pays. It's killing me on scans, much less getting back into treatment, which I will probably have to do.

So, now the new onc is going to review 5 years worth of my history, have me meet with a chest surgeon, and talk to a liver specialist - he asked me if I had ever been treated for hepatitis. Funny, but my old onc told me my liver was looking better than ever. You see where I'm going with this? Oh, my!

Something else very ironic, my horoscope is guess what? CANCER. One of life's funny twists. Anyway, CANCER's are very loyal people and that is certainly me. Maybe too loyal.
We're talking about my life now. And we're at a critical juncture here that could determine so many things. So, scary as it is, I'm going to take another leap of faith, and go see this guy for awhile and see what they can do. UT Southwestern Medical Center in Dallas, a teaching hospital, where they are up on the latest things and their oncology teams "meet and discuss" the cases, so maybe we'll find out what is up.

I strongly encourage you to please seek another opinion, just so you can compare apples to oranges, and who knows, it might be the best thing for you. I hope it is for me and I will certainly let you and everybody know what happened.

Your post touced me this afternoon and hit home, and so I had to write you. I care about what happens to you and want to see you on this post for a long time. Please let Me/Us know.

All the best
0Craig

Shayenne

bdee said:

Thanks for all your answers
I guess I'm frustrated that my doctor will not commit to ANYTHING. He says he's going to do a monthly CEA - but he doesn't. He says he's going to do CTs every three months - but he doesn't. I don't want to change doctors, to me that's too scary to go to someone who doesn't know my experiences from the very first. I just wish my doctor would do what he says and give me an idea of how long this is going on. I think if he did CTs every three months it would tell us more, but I may be wrong about that too.

Thanks a lot for everyone's answers. I guess I'm on chemo until I'm not. The doctor knows best - I hope!!

Debbie

It may be...
.. a scary thought changing doctors, but they get to know your case quick, and could also help you alot more, I sure wouldn't go to a doctor I could not depend on, and who doesn't stick to his word, you may even benefit from going to another doctor and like him/her better

Hugssss~
~Donna