The Colon Club

Hi everyone,

Mom was diagnosed with Rectal cancer in January. Today is the last day of her 6 weeks chemo radiation treatment. I am very grateful to this forum for providing us with all the support to survive this treatment.

She has been in a lot of pain the last few days. She even had fever during the last week. Does the pain get better after the treatment ends?

Also, now we have to wait for 4-6 weeks (4 or 6 - will get to know today) until any further tests are done. How is anyone supposed to just stay calm and wait? What if it spreads during this period?

If anyone has any suggestions for dos/donts during the wait period, I would really appreciate it.

-friendship

I guess coping with the wait periods is a personal thing, but a few things I’ve found that helped:

- As hard as the radiation has been on your mum, chances are it’s been waaay harder on the tumour! In fact one reason for the wait period is that much of the tumour shrinkage happens in the weeks *after* radiation, not during. So chances are during this 4-6 week period, things are still moving in the right direction. Some of the results around response and down-staging of tumours from long-course radiation are truly impressive, and should give you some confidence here.

- I try to use these periods to try to ‘forget’ about cancer stuff, and rebuild my strength for the next phase of treatment. Easier said than done I realise! For me this means staying off Google, forums and social media for a bit, doing some daily exercise/activity, and eating like my life depends on it (things I find harder to do during treatment).

- Having a few planned fun activities can be nice, even if it’s just one thing each week. Something to look forward to rather than just counting the days to the next scan, and keep some semblance of “normalcy”.

Well done to you both for handling the radiation, and best wishes for the scans and next steps!

I think you will be getting some more good suggestions as time goes by. These suggestions will probably come from other rectal cancer patients who have recently gone through pre-surgery chemo/radiation. (I had post-surgery chemo/radiation while on a temporary stoma bag, so my experience is not exactly relevant to your mother's situation.)

It would help if your mother could specify what kind of pain she has, whether it is constant or intermittent, and where the pain is located (i.e., in the rectum, in a nearby organ,on the outside skin) etc.

It would also help if you could update your signature so that readers can better understand the context. Remember, your updated sighature cannot be more than 512 characters long, so you will need to be selective and choose very short phrases or abbreviations so that you do not exceed the 512 limit.
.

O Stoma Mia wrote:Here is a draft of your signature, showing the data known to date. Some items are missing and need to be specified later, when known.

Eventually you should create a proper signature in your profile so that other members here can see your mother's situation at a glance:
How to create a signature
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=52681&p=421597#p421597

Caregiver to Mom/ F, 47 years old
DX: Rectal Cancer (RC) ,
Tumor Location: 4 cm from AV
Tumor type: Adenocarcinoma with signet ring-cell features.
Tumor size: approx 6 cm
Tumor grade: G3: Poorly differentiated (high grade)
TNM code: TxN1aM0 (tentative staging)
Stage: Stage IIIA (tentative)
Positive lymph nodes: Tentatively: 1 (one) - (inferred by CT, and PET/CT, not by biopsy)
Mets: None observed on CT or PET/CT
Baseline CEA value: 1.4 ng/ml
Lymphovascular invasion (LVI) - absent
Perineural invasion (PNI) - present
Surgical margins: N/A (margins cannot be determined until after primary surgery)
MSI status (if known) – Important!! Adjuvant therapy cannot be determined without this finding.
Primary surgery type: Most probably ULAR, Either laparascopic or open resection (To be decided later)
Ostomy surgery: Ileostomy most likely. Decision at time of primary surgery
Radiation therapy: Chemo/radiation – 6 weeks (completed on March 21, 2019)
Adjuvant Chemotherapy: e.g., XELOX, CAPEOX, FOLFOX, etc., to be determined later

friendship wrote:....If anyone has any suggestions for dos/donts during the wait period, I would really appreciate it. -friendship

There are some pre-surgery suggestions that member rp1954 has made in the past. You might want to look into some of his posts, particularly the ones on cimetidine, and ask your doctor about this approach.

rp1954 wrote:...Pre- or peri-operative cimetidine is one of the most fundamental advanced CRC treatment opportunities most never got that changes survival and can be done up to, through, and immediately after surgery. It is really one of the first steps that needs to be addressed....
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=61405&p=485743#p485743

It's my husbands last day of chemoradiation today as well. The last two weeks were pretty rough for him..he has BAD burns from radiation and is waking up 2-3 times a night in a lot of pain. I think it's pretty standard that your mom has to wait a few weeks to get her scans done. Here we are booked in 8 weeks for CT/MRI and his surgery will be most likely 2 weeks after that.

Rock_Robster wrote:I guess coping with the wait periods is a personal thing, but a few things I’ve found that helped:

- As hard as the radiation has been on your mum, chances are it’s been waaay harder on the tumour! In fact one reason for the wait period is that much of the tumour shrinkage happens in the weeks *after* radiation, not during. So chances are during this 4-6 week period, things are still moving in the right direction. Some of the results around response and down-staging of tumours from long-course radiation are truly impressive, and should give you some confidence here.

- I try to use these periods to try to ‘forget’ about cancer stuff, and rebuild my strength for the next phase of treatment. Easier said than done I realise! For me this means staying off Google, forums and social media for a bit, doing some daily exercise/activity, and eating like my life depends on it (things I find harder to do during treatment).

- Having a few planned fun activities can be nice, even if it’s just one thing each week. Something to look forward to rather than just counting the days to the next scan, and keep some semblance of “normalcy”.

Well done to you both for handling the radiation, and best wishes for the scans and next steps!

Thank you for the suggestions. Means a lot. Will try my best to keep things normal.

Best wishes to you too.

O Stoma Mia wrote:

friendship wrote:....If anyone has any suggestions for dos/donts during the wait period, I would really appreciate it. -friendship

There are some pre-surgery suggestions that member rp1954 has made in the past. You might want to look into some of his posts, particularly the ones on cimetidine, and ask your doctor about this approach.

rp1954 wrote:...Pre- or peri-operative cimetidine is one of the most fundamental advanced CRC treatment opportunities most never got that changes survival and can be done up to, through, and immediately after surgery. It is really one of the first steps that needs to be addressed....
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=61405&p=485743#p485743

Thanks you O Stoma Mia. Will definitely look into it.

_Jelen90 wrote:It's my husbands last day of chemoradiation today as well. The last two weeks were pretty rough for him..he has BAD burns from radiation and is waking up 2-3 times a night in a lot of pain. I think it's pretty standard that your mom has to wait a few weeks to get her scans done. Here we are booked in 8 weeks for CT/MRI and his surgery will be most likely 2 weeks after that.

Hi,

So sorry that you are going through this too. My mom keeps waking up at night too, due to the pain.
We have gotten an appointment to meet our oncologist on May 2nd. Hope my mom and your husband, both get news of good pathological response.
All the best.

Regards
friendship