Finish 12 rounds of chemo and then what?

sasjourney

I am curious what happens after the chemo is done and IF PET comes back NED and no tumors are present. What recommendation have people been given after they are done with chemo and everything looks okay? I have heard of some people continuing a maintenance type drug (avastin) after that. Has anyone done that?

Thanks,

Sara

Crow71

First - I'd dance
Hey Sara - I don't know about maintenance chemo. I'm sure someone will chime in with an informed opinion.
I just wanted to say that if you are NED after those surgeries and 12 rounds of chemo you should do the happy naked dance!!!
Take Care - Roger

Kathryn_in_MN

It all depends
It all depends on your original diagnosis, and the individual situation. Unless you are stage IV, generally when you are declared NED you are done with any active treatments, and put on a monitoring schedule. Some Stage IV will stay on some sort of chemo maintenance.

I finished FOLFOX in April. In May I had my CEA checked and a PET scan and was declared NED. Next week I have my CEA re-check, and will have it every 3 months for the first two or three years. After that it may slow to twice per year. I have alternating PET and CT scans every 6 months. So in November I'll have a CT. Next May I'll have a PET again. After two years that may slow to annual scans for the next 3 years, but I've been warned that since there is a strong chance that I was stage IV, I might stay on the more rigorous schedule of testing for at lesat 3 years, as this is the timeframe when it is most likely to have a recurrance. Most are checked for at least 5 years, no matter what stage. Some are done having scans and labs after 5 years. Others are checked for 10.

geotina

Sara:
My hubby is on maintenance chemo after completing 6 months of Folfox. He gets IV of 5FU and leucovorin weekly adding Avastin every other week. He is Stage IV. He has mets to the liver and lungs. He has not had any surgery or radiation treatment other than original colon resection. This maintenance chemo has halted (so far)any progression and has kept him stable. His mets shrunk and many disappeared significantly on Folfox. I think most Stage IV's do get some type of mainenance chemo.

I don't think they do mainenance chemo for stages other thant IV, but they are monitored very closely.

Tina

just4Brooks

PARTY!!!
Then work on keeping it gone for 5 years!!

Left Coaster

just4Brooks said:

PARTY!!!
Then work on keeping it gone for 5 years!!

Depends on your stage and the Dr.'s approach to monitoring
Others have commented what their opinions and experiences are. Stage IV is what I have and my Dr. will re-assess my disease now that I am done with 12 treatments of FolFiri. I will have to complete radition for bone mets before this re-assessment. I have since had a MRI and there is no evidence of disease (NED) there and to monitor for recurrences I will have a brain MRI every three months for a while (not sure what that time table is long term).

Ryan

Lilmiss82

just4Brooks said:

PARTY!!!
Then work on keeping it gone for 5 years!!

Wanted to say
I have stage iv rectal cancer. Had surgery, where they removed primary, lymph nodes and the 1 liver met. Then did 7 months of folfox finished on June 13. Had a ct scan on June 24 and all was clear. So, now I'm doing just avastin and ct scans every 3 months. Onclogist will change plan if something shows up on next scan. Hope that helps

sasjourney

Lilmiss82 said:

Wanted to say
I have stage iv rectal cancer. Had surgery, where they removed primary, lymph nodes and the 1 liver met. Then did 7 months of folfox finished on June 13. Had a ct scan on June 24 and all was clear. So, now I'm doing just avastin and ct scans every 3 months. Onclogist will change plan if something shows up on next scan. Hope that helps

Lilmiss82
Lilmiss82,

How often do you take avastin? What are the side effects from it? Glad to hear you are all clear. Thanks for the reply.

Take care,
Sara

Lilmiss82

sasjourney said:

Lilmiss82
Lilmiss82,

How often do you take avastin? What are the side effects from it? Glad to hear you are all clear. Thanks for the reply.

Take care,
Sara

Hi Sara
Sorry for the delay in my response. I get the Avastin every other week. Just like the FOLFOX infusions (only a lot shorter:) 1st infusion is 90 minutes, 2nd is 60 minutes and the rest of the infusions will only be 30 minutes). The only side effects I have, but do keep in mind that I have had Chemo/rad last summer, followed by the surgery, and then more chemo, it may just be my body recovering from the last year, but overall Avastin is a walk in the park. I had my 1st infusion of Avastin 2 weeks ago, this wednesday will be my 2nd. On the first infussion I noticed a headache, abdominal cramping, and I was a little tired when I came home but that's all. The nurses told me that many people do not have any side effects at all but they will monitor your blood pressure since some people will get high blood pressure while on Avastin and also to be on the look out for nose bleeds. Sara if you have any other questions I am more than happy to help Take care,and stay positive!

dianetavegia

Welcome Sara!
Was the mass near your ovaries on the outside of your colon? Also, since you had small spots on the liver you are Stage IV. I would think you'd do more than just 6 months of FOLFOX.

EJmauldin

sasjourney said:

Lilmiss82
Lilmiss82,

How often do you take avastin? What are the side effects from it? Glad to hear you are all clear. Thanks for the reply.

Take care,
Sara

Avastin there matey!
I had avastin with both my chemo treatments.
I am stage IV and had surgrey. I did folfox with avastin, everyother week. I got high blood pressure and a clot in my leg. I was put on Lovenox blood thinner and high BP meds. Finished my 12 treatments and began a normal life untill one of the PET scans showed a highlighted area, (I did scans every 3 months). They thought it was cancer, it was. Second surgrey and more chemo, folfuri and avastin. They started me on the Lovenox with my first treatment, to keep me from having another blood clot. I had to start taking stronger BP meds. I did 12 more treatments of avastin when the chemo was thorugh.
I did 30 mins everyother week. That was a total of 24 avastin.
I am still on the BP meds, but don't take the lovenox now.
I did have nose bleeds, the clot and high BP. But I am still here and live a good life.
I keep fighting it.
I am now doing radation for more cancer in my lymphnodes. I just finished the avastin and have cancer again. I love being with my children and my wonderful husband.
I work and keep busy.
I have a good life.
You will too!!
Eileen

sasjourney

dianetavegia said:

Welcome Sara!
Was the mass near your ovaries on the outside of your colon? Also, since you had small spots on the liver you are Stage IV. I would think you'd do more than just 6 months of FOLFOX.

Hi Diane,
Thanks for the
Hi Diane,

Thanks for the reply. The mass near the ovaries was outside the colon and I had a hysterectomy when they removed the tumors. I am a stage IV and have 4 more rounds of chemo left and was wondering what happens after that. My onc. mentioned a few options, but I was curious what others are doing.

Take care,
Sara

sasjourney

Lilmiss82 said:

Hi Sara
Sorry for the delay in my response. I get the Avastin every other week. Just like the FOLFOX infusions (only a lot shorter:) 1st infusion is 90 minutes, 2nd is 60 minutes and the rest of the infusions will only be 30 minutes). The only side effects I have, but do keep in mind that I have had Chemo/rad last summer, followed by the surgery, and then more chemo, it may just be my body recovering from the last year, but overall Avastin is a walk in the park. I had my 1st infusion of Avastin 2 weeks ago, this wednesday will be my 2nd. On the first infussion I noticed a headache, abdominal cramping, and I was a little tired when I came home but that's all. The nurses told me that many people do not have any side effects at all but they will monitor your blood pressure since some people will get high blood pressure while on Avastin and also to be on the look out for nose bleeds. Sara if you have any other questions I am more than happy to help Take care,and stay positive!

Thanks Lilmiss82
Thanks for the info. It helps to hear what others are doing and look at my options. My onc. recommended Avastin like you are doing. I'm glad to hear that you are not having too many side effects. How long are you going to be on Avastin?

Big hugs to you,
Sara

sasjourney

Thanks Everyone
Thanks for the replies and yes I will dance naked and party. I really appreciate this board and have learned a great deal from everyone. It really helps to know that we are not alone in this battle and there are so many people doing well.

Take care,
Sara

Nana b

sasjourney said:

Thanks Everyone
Thanks for the replies and yes I will dance naked and party. I really appreciate this board and have learned a great deal from everyone. It really helps to know that we are not alone in this battle and there are so many people doing well.

Take care,
Sara

Hmmm
I don't do any maintenance chemo/Avastin, maybe I need to ask my ONC about it!!

sasjourney

Nana b said:

Hmmm
I don't do any maintenance chemo/Avastin, maybe I need to ask my ONC about it!!

Nana b
What stage are you? I have heard of other Stage IV people that are not doing anything after chemo if there are no more tumors present. They are just being monitored regularly. I am going to consult with some other onc. about their recommendations.

Hugs,
Sara

geotina

Nana b said:

Hmmm
I don't do any maintenance chemo/Avastin, maybe I need to ask my ONC about it!!

Nana b
George is doing maintenance because he has/had lots of mets in his liver and lungs and has had no surgery (and probably never will but I know, never say never) other than the colon resection. Maintenance keeps things in check. You may not need maintenance since you had a liver resection and all has been going well for you. I think mets to more than one organ plays a big part in the picture.

Take care = Tina

Lilmiss82

geotina said:

Nana b
George is doing maintenance because he has/had lots of mets in his liver and lungs and has had no surgery (and probably never will but I know, never say never) other than the colon resection. Maintenance keeps things in check. You may not need maintenance since you had a liver resection and all has been going well for you. I think mets to more than one organ plays a big part in the picture.

Take care = Tina

The plan is 6 months
But my oncologist will do a ct scan in mid cycle ( most likely in October). Depending on what the ct shows will determine if I continue with avastin alone or if 5- Fu & luecovorin will be added to the mix. The chemo will only be added if the ct shows any new growths. So for now I'll just take it day by day

Nana b

sasjourney said:

Nana b
What stage are you? I have heard of other Stage IV people that are not doing anything after chemo if there are no more tumors present. They are just being monitored regularly. I am going to consult with some other onc. about their recommendations.

Hugs,
Sara

Stage 1V. No other tumors
Stage 1V. No other tumors. Thank God!

Nana b

geotina said:

Nana b
George is doing maintenance because he has/had lots of mets in his liver and lungs and has had no surgery (and probably never will but I know, never say never) other than the colon resection. Maintenance keeps things in check. You may not need maintenance since you had a liver resection and all has been going well for you. I think mets to more than one organ plays a big part in the picture.

Take care = Tina

Thanks!

Thanks!