3 month scan ? What to expect. (Rectal)

[Marie25]

What were your results like after 3 months folfox for rectal cancer? DH scan is in one month and I am starting to worry. I am hoping, praying etc that the scans are good. Hopefully this folfox does it's job because the side effects aren't fun for him. Feel free to share your 3 month scan results and what the next steps were I believe it will be radiation soon as part if the TNT. I am trying to be positive but it is so hard. I keep telling myself folfox works snd that's why he is on it.

[zephyr]

My first scan showed shrinkage.

It's hard to stay positive, I know. I believe with all my heart that the caregiver has the hardest job. I don't know how my husband does it, and I'm more thankful to him than I could possibly express. One thing that kept me going during some dark periods was his insistence that, "you're not going anywhere - we will do whatever it takes and go wherever we need to go to find the treatment you need". Work on staying positive for both of you. As a patient, meditation helps me stay focused, and helps me stay in this moment instead of being overwhelmed by my fears of tomorrow.

You didn't ask and I hope you don't mind me butting in ... try to find a support system for YOU, as the caregiver; a support group at the cancer center, or church, or family, or a group of friends. Let them help you cook, let them cover for you when you need a break, let them pick up groceries, let them be your sounding board when you need to vent. If someone tells you they want to help but don't know how, take them at their word and give them a recipe card or grocery list or ... You may be surprised by who turns up to help and how they help. You may also be surprised at who disappears - it's ok, let them go. Don't be too hard on them unless they do something really obnoxious - some people deal with it better than others. As many here might tell you, this is a marathon not a sprint. Pace yourself. If you burn out, you'll be little help to yourself or your husband. Please forgive me if I've overstepped the line here.

You'll find an amazing support group here too.

[claudine]

Are CEA levels good markers for your husband, and does he get them with each infusion? They are for mine, and the big CEA drop early in his Folfiri treatment was mirrored by a significant decrease in tumor size. It's not the same as getting actual shrinkage measurements but it gives you something in between scans!
Waiting is SO hard... Hang in there XXXXXXXXXXXXXX

[Punky44]

My mom’s showed shrinkage and her CEA dropped bit by bit after each infusion.

[Marie25]

My first scan showed shrinkage.

It's hard to stay positive, I know. I believe with all my heart that the caregiver has the hardest job. I don't know how my husband does it, and I'm more thankful to him than I could possibly express. One thing that kept me going during some dark periods was his insistence that, "you're not going anywhere - we will do whatever it takes and go wherever we need to go to find the treatment you need". Work on staying positive for both of you. As a patient, meditation helps me stay focused, and helps me stay in this moment instead of being overwhelmed by my fears of tomorrow.

You didn't ask and I hope you don't mind me butting in ... try to find a support system for YOU, as the caregiver; a support group at the cancer center, or church, or family, or a group of friends. Let them help you cook, let them cover for you when you need a break, let them pick up groceries, let them be your sounding board when you need to vent. If someone tells you they want to help but don't know how, take them at their word and give them a recipe card or grocery list or ... You may be surprised by who turns up to help and how they help. You may also be surprised at who disappears - it's ok, let them go. Don't be too hard on them unless they do something really obnoxious - some people deal with it better than others. As many here might tell you, this is a marathon not a sprint. Pace yourself. If you burn out, you'll be little help to yourself or your husband. Please forgive me if I've overstepped the line here.

You'll find an amazing support group here too.

You didn't over step. That is great advice and I do appreciate it. Thank you!

[Marie25]

Are CEA levels good markers for your husband, and does he get them with each infusion? They are for mine, and the big CEA drop early in his Folfiri treatment was mirrored by a significant decrease in tumor size. It's not the same as getting actual shrinkage measurements but it gives you something in between scans!
Waiting is SO hard... Hang in there XXXXXXXXXXXXXX

Actually no, and I didn't even think about the CEA! I will have him ask his oncologist about it.

[Rock_Robster]

Hi Marie,

What sort of scan is he having? I had good shrinkage of all my lesions after 4 cycles (8 weeks) of FOLFOX (about 30-40% reduction, so that was encouraging. One thing to consider however is that the rectal area doesn’t always image very well on CT, so don’t be too disappointed if they don’t make definitive statements around reduction in tumour size - it may be that they can only really comment on the change in wall thickening (without an MRI or scope).

Also no harm in testing CEA but my onc isn’t a big fan during neoadjuvant chemo, as it may not drop immediately or can even increase (due to chemo activity), which can understandably cause anxiety.

Good luck!
Rob

[Marie25]

Hi Marie,

What sort of scan is he having? I had good shrinkage of all my lesions after 4 cycles (8 weeks) of FOLFOX (about 30-40% reduction, so that was encouraging. One thing to consider however is that the rectal area doesn’t always image very well on CT, so don’t be too disappointed if they don’t make definitive statements around reduction in tumour size - it may be that they can only really comment on the change in wall thickening (without an MRI or scope).

Also no harm in testing CEA but my onc isn’t a big fan during neoadjuvant chemo, as it may not drop immediately or can even increase (due to chemo activity), which can understandably cause anxiety.

Good luck!
Rob

Thanks! I believe he us having a pet/ct . He has not had pet before, only mri and ct. Wow that's alot of shrinkage ! By the time he has these scans he will have completed 7 cycles so I hope he has similar results.

[NHMike]

I had radiation and 5FU for 28 days and the scan showed 90+% shrinkage. Your husband looks like he's doing more of a TNT approach and I don't really have a feel for shrinkage percentages with FOLFOX first approaches.

[martd]

I did 12 rounds of folfox, after the first couple of rounds I noticed a big difference, bowl movements were back to normal. At my first scan it showed about 40% shrinkage with the liver Mets, the scan wasn't a good image for the rectal tumor but I believe it's because the tumor was gone at that time. I ended up having a complete response to chemo and the tumor disappeared.

[Cured]

Marie25, We hope for good results for your husband.

I also have never heard of FOLFOX first. Surgery seems to be the standard.
My follow-up was colonoscopy. The PET scan I had was a year after my surgery and treatments.

[NHMike]

Marie25, We hope for good results for your husband.

I also have never heard of FOLFOX first. Surgery seems to be the standard.
My follow-up was colonoscopy. The PET scan I had was a year after my surgery and treatments.

There were a number of people here on TNT trials in 2018.

[Marie25]

Marie25, We hope for good results for your husband.

I also have never heard of FOLFOX first. Surgery seems to be the standard.
My follow-up was colonoscopy. The PET scan I had was a year after my surgery and treatments.

There were a number of people here on TNT trials in 2018.

Correct and based on that the doctors seem to think that taking the folfox before surgery will "deliver more chemo to the whole body to better fight any possible micrometasasis" . They also said chemo is harder to tolerate after surgery. The long term results are anticipated to be at least the same if not better.

[NHMike]

Marie25, We hope for good results for your husband.

I also have never heard of FOLFOX first. Surgery seems to be the standard.
My follow-up was colonoscopy. The PET scan I had was a year after my surgery and treatments.

There were a number of people here on TNT trials in 2018.

Correct and based on that the doctors seem to think that taking the folfox before surgery will "deliver more chemo to the whole body to better fight any possible micrometasasis" . They also said chemo is harder to tolerate after surgery. The long term results are anticipated to be at least the same if not better.

If you get a PCR, then you might not need radiation which can cause various kinds of damage. If you do need radiation, then you can get that and then maybe you have a PCR and don't need surgery. The idea on TNT is to do less long-term damage.

[Pyro]

Marie25, We hope for good results for your husband.

I also have never heard of FOLFOX first. Surgery seems to be the standard.
My follow-up was colonoscopy. The PET scan I had was a year after my surgery and treatments.

I did it first, if they want the tumor to shrink before cutting it out they do the chemo first. It’s the emergency surgeries I hear about that get the surgery first, in my experience.