3 month scan ? What to expect. (Rectal)

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Marie25
Posts: 21
Joined: Tue Aug 20, 2019 9:32 am

3 month scan ? What to expect. (Rectal)

Postby Marie25 » Fri Nov 01, 2019 1:29 pm

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.
Supporter to my husband
Stage 3 T3N+
Folfox 8/2019
Radiation tbd
Surgery tbd

zephyr
Posts: 259
Joined: Thu Aug 18, 2016 7:31 am

Re: 3 month scan ? What to expect. (Rectal)

Postby zephyr » Fri Nov 01, 2019 2:54 pm

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.
Nov-2009 Early stage CRC found during routine colonoscopy
2010, 2011, 2014 Follow up colonoscopies, all clear
Jun-2016 CRC found during routine follow up colonoscopy, surgery, Stage 4, KRAS, MSS, inoperable lung mets
Aug-2016-May-2018 Folfox, 5FU & Avastin, 5FU, Folfiri & Cyramza
Aug/Sep-2018 YAG laser surgeries (Germany) on both lungs, 11 nodules (9 mets) removed
Nov-2018 clean CT scan
Mar-2019 New lung nodules
Apr/Jul-2019 Xeloda/Avastin, SBRT
Sept-2019 Stable! Continue Xeloda/Avastin

Claudine
Posts: 173
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: 3 month scan ? What to expect. (Rectal)

Postby Claudine » Fri Nov 01, 2019 3:04 pm

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
Wife of Dx 04/2018 (51 yo). MSS, KRAS mutated G12A
No primary, lytic tumor L4 vertebrae, CEA 10
Radiation 04/2018
Resection small intestine 05/18 (no cancer found - Crohn's)
Xelox * 6, 05/2018 to 10/2018
6.7 cm left adrenal mass 03/14/2019, 4.4 cm 05/21, 4.1 cm 09/16
SBRT L4 02/2019
Folfiri + Avastin
CEA since 03/15: 58, then low of 3.2 now at 5.0 (twice)
Scan 03/14: Multiple small lung nodules
Scan 05/21: shrinking
Scan 09/16: lungs show no abnormalities (YAY!!!)

Punky44
Posts: 383
Joined: Mon Oct 01, 2018 4:29 pm

Re: 3 month scan ? What to expect. (Rectal)

Postby Punky44 » Fri Nov 01, 2019 6:26 pm

My mom’s showed shrinkage and her CEA dropped bit by bit after each infusion.
Caregiver to my amazing mom (68)
10/1/18 DX with rectal cancer; CEA 17 at diagnosis
T3N2M0
Total neoadjuvant therapy:
8 rounds Folfox 11/5/18 - 2/11/19
Short course radiation 3/14/19 - 3/20/19
Robotically assisted laparoscopic LAR 3/21/19
Pathology report says yT2N0M0 with 0/38 nodes
CEA 4/23: 2.1; 7/24: 1.9; 10/22: 2.6
6/28/19 Reversal and port out
10/22 — nodules on lungs—possible infection or mets—PET scheduled for 11/25

Me: 34, first colonoscopy 11/16/18—normal! Come back in 5 years.

Marie25
Posts: 21
Joined: Tue Aug 20, 2019 9:32 am

Re: 3 month scan ? What to expect. (Rectal)

Postby Marie25 » Fri Nov 01, 2019 7:15 pm

zephyr wrote: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!
Supporter to my husband
Stage 3 T3N+
Folfox 8/2019
Radiation tbd
Surgery tbd

Marie25
Posts: 21
Joined: Tue Aug 20, 2019 9:32 am

Re: 3 month scan ? What to expect. (Rectal)

Postby Marie25 » Fri Nov 01, 2019 7:17 pm

Claudine wrote: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.
Supporter to my husband
Stage 3 T3N+
Folfox 8/2019
Radiation tbd
Surgery tbd

Rock_Robster
Posts: 380
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: 3 month scan ? What to expect. (Rectal)

Postby Rock_Robster » Fri Nov 01, 2019 8:27 pm

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
Male 37; Melbourne, Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+ PNI-
3 LN; 4 liver mets, resectable
pT3pN1aM1a; Stage IVa. MSS, NRAS (G13R)
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0
11/18 - FOLFOX x 6
3/19 - Liver resection
4-5/19 - 25 x pelvic radiation; complete met. response, TRG 3
07/19 - ULAR (robot), temp ileo, 1/27 LN
08/19 - Missed liver spot
08-11/19 - FOLFOX x 1, FOLFOXIRI x 1, FOLFIRI x 5
12/19 - Planned liver resection #2 & stoma reversal

Marie25
Posts: 21
Joined: Tue Aug 20, 2019 9:32 am

Re: 3 month scan ? What to expect. (Rectal)

Postby Marie25 » Sat Nov 02, 2019 12:49 pm

Rock_Robster wrote: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.
Supporter to my husband
Stage 3 T3N+
Folfox 8/2019
Radiation tbd
Surgery tbd

NHMike
Posts: 2324
Joined: Fri Jul 21, 2017 3:43 am

Re: 3 month scan ? What to expect. (Rectal)

Postby NHMike » Sat Nov 02, 2019 3:31 pm

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.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

martd
Posts: 112
Joined: Tue Nov 21, 2017 3:48 pm
Location: Phoenix, Az

Re: 3 month scan ? What to expect. (Rectal)

Postby martd » Sat Nov 02, 2019 8:33 pm

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.
49 y/o male dx 11/2017 crc
Stage 4 with 17 liver Mets, cea 490
RAS, BRAF WT Tp53 LOF
12 rounds folfox , avastin
5/18 cea 2.8 liver resection and pve
7/18 part 2 liver resection, remove right side of liver
Surgical site mrsa infection, wound vac
8/18 cea .9 cCR, rectal tumor is gone
Rectal surgery postponed, watch and wait
10/18 clear scan CEA .7
01/19 clear scan CEA .9
04/19 clear scan CEA .9
07/19 clear scan CEA 1.0

Cured
Posts: 535
Joined: Thu Nov 27, 2008 10:53 pm
Location: MO

Re: 3 month scan ? What to expect. (Rectal)

Postby Cured » Sun Nov 03, 2019 10:06 pm

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.
5-08:Stg 3 Rectal: 6/14 Nodes
Ace Surgeon Remvd 90%Rectum,lots of Colon-Full Incision
Ileo Rev'd 6 Mos.
Radiatn+5fu Pre-Surgery
FOLFOX 8 CyclDone 1-09
Clear Scope 8-17; CEA 2-18
Glory to God! Healed by prayers of many: for 10 years
7-18: tumor pressing against brain Removed
Metastatic to lung. CEA 6.9
Folfiri
CEA to 4.5 after 1 chemo
After 8rds CEA 3
CEA 1.8, 2.3,1.7
12 rds Folfiri
Avastin evy 3 wks
Had Seizure Anti-seizure meds work-no driving for 6 months
Neuro allows me to drive again 0 meds

NHMike
Posts: 2324
Joined: Fri Jul 21, 2017 3:43 am

Re: 3 month scan ? What to expect. (Rectal)

Postby NHMike » Sun Nov 03, 2019 10:26 pm

Cured wrote: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.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

Marie25
Posts: 21
Joined: Tue Aug 20, 2019 9:32 am

Re: 3 month scan ? What to expect. (Rectal)

Postby Marie25 » Mon Nov 04, 2019 7:45 am

NHMike wrote:
Cured wrote: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.
Supporter to my husband
Stage 3 T3N+
Folfox 8/2019
Radiation tbd
Surgery tbd

NHMike
Posts: 2324
Joined: Fri Jul 21, 2017 3:43 am

Re: 3 month scan ? What to expect. (Rectal)

Postby NHMike » Mon Nov 04, 2019 8:03 am

Marie25 wrote:
NHMike wrote:
Cured wrote: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.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

Pyro
Posts: 303
Joined: Mon Oct 12, 2015 7:40 pm
Location: Tucson, AZ

Re: 3 month scan ? What to expect. (Rectal)

Postby Pyro » Mon Nov 04, 2019 3:05 pm

Cured wrote: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.
Aug 2015- Stage 4 CC with liver Mets(38/m)
Sep 2015- Avastin/Folfox/Iron
Dec 2015-Not liver surgery candidate
Jan 2016- Erbitux/Folfiri, 2nd opinion at MDA in TX
Feb 2016 -MDA liver surgery
Mar 2016 -30% of left lobe rem, PVE
May 2016 - 70% of liver rem
Jun 2016-Rad
Jan 2017-perm colost @MDA
Jul 2017-Erb/FOLFURI
Nov 2017 -Lung & Liver ablations@MDA
Jan 2018 -Xeloda & Avastin mx
Jul 2018-Avast/FOLFURI
Sep 2018-Rad
Mar 2019 - Keytruda fail
Jun 2019 - FOLFURI
Aug 2019 - No more, quality time!


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