Chemo & Radiation BEFORE 1st Surgery - What to Expect?

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SilverWedding
Posts: 71
Joined: Sat May 18, 2019 5:54 am
Facebook Username: Cynthia Harding Marshall

Chemo & Radiation BEFORE 1st Surgery - What to Expect?

Postby SilverWedding » Thu May 30, 2019 5:09 am

Thank you in advance for telling me how to prepare for supporting my husband this summer. Side effects?

Plan is 6 or so weeks radiation and chemo;
then 6 weeks to “cool down” before surgery.

Surgeon wants to shrink tumor BEFORE surgery to offer more margin so that he can do TEMPORARY colostomy and then reroute back to rectum in winter. I sure hope this works. Thankful that surgeon thinks it will.
DH, 56, Sigmoid & rectum
Adenocarcinoma 2cm
 G2: Moderately differentiated
T3N2aM0
Stage IIIb
LN 6/22
5/19 Baseline CEA value - 18.9
Lymphovascular invasion (LVI): present
Perineural invasion (PNI): not identified
Surgical margins: proximal -negative; distal - negative 1.5cm; circumferential - negative 1mm)
MSI status: Waiting‬
Lynch status: ?
KRAS/BRAF: ?
Open Restorative Proctectomy, J-Pouch Coloanal Anastomosis, Loop Ileo w/Appendectomy
Neo-adjuvant Xeloda/radiation
Adjuvant Chemo: to begin 11/19

Rock_Robster
Posts: 517
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Chemo & Radiation BEFORE 1st Surgery - What to Expect?

Postby Rock_Robster » Thu May 30, 2019 8:05 am

There is a great (long) thread called “surviving radiation for rectal cancer” - I’d suggest searching for that and having a read through as a starting point. Just bear in mind that folk (understandably) tend to come to forums for help with more difficult cases, so this may not represent the full range of outcomes (indeed I found mine quite tolerable). Nonetheless it will give you some great tips to make life easier, and also a few things to watch out for along the way.

Of course you can always post there or here with any specific questions too.

Best of luck with it
38M Australia
10/2018 Dx RC, 12cm high
Mod diff, EMVI+ LVI+. 4 liver mets
pT3N1aM1a Stage IVa. MSS NRAS G13R
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0, Mar-20=2.2, May-20=1.9, Jun-20=2.1, Sep-20: 2.1
11/18 FOLFOX x6
3/19 Liver resect
5/19 25x pelvic radiation; complete met. response
07/19 ULAR w ileo, 1/27 LN+
08/19 Found liver spot
08/19 FOLFOX x1, FOLFOXIRI x1, FOLFIRI x5
12/19 Liver resect
02/20 Ileo reversed
03/20 NED (PET+MRI)
06/20 NED (CT+MRI)
07/20 Clear scope
09/20 NED (PET)

Rock_Robster
Posts: 517
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Chemo & Radiation BEFORE 1st Surgery - What to Expect?

Postby Rock_Robster » Thu May 30, 2019 8:18 am

Although I now realise you did ask specifically how best to support - my advice tends to be more practical than emotional, but here it is based solely on my experience:

- Order a bidet attachment for your toilet (available on Amazon), or a separate squirt/rinse bottle to keep nearby.
- Have Imodium on hand for diarrhoea, Buscopan for cramping, Zofran for nausea, hydralyte for dehydration, and Ural for cystitis [you may only need the Imodium, but the others are fairly cheap and worth having handy if needed]
- Make sure he eats a *proper* meal within 30 min before taking the Xeloda, every time
- Get a non-medicated moisturising cream (such as MooGoo) to start using on the bum area at least once a day to prevent/delay any local effects (the nurses or a pharmacist can steer you to something stronger if needed later)
- If they give him guidance on how much water to consume before treatment (for bladder filling), get a water bottle and mark the amount so he can use it each day. I found adding hydralyte made it taste better and helped keep me hydrated.
- There may be some times he just wants to go back to bed after treatment. The combination of chemo and radio can be very fatiguing. My wife was very patient with me :)

Fingers crossed for smooth sailing and a great response!
38M Australia
10/2018 Dx RC, 12cm high
Mod diff, EMVI+ LVI+. 4 liver mets
pT3N1aM1a Stage IVa. MSS NRAS G13R
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0, Mar-20=2.2, May-20=1.9, Jun-20=2.1, Sep-20: 2.1
11/18 FOLFOX x6
3/19 Liver resect
5/19 25x pelvic radiation; complete met. response
07/19 ULAR w ileo, 1/27 LN+
08/19 Found liver spot
08/19 FOLFOX x1, FOLFOXIRI x1, FOLFIRI x5
12/19 Liver resect
02/20 Ileo reversed
03/20 NED (PET+MRI)
06/20 NED (CT+MRI)
07/20 Clear scope
09/20 NED (PET)

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Green Tea
Posts: 202
Joined: Mon Oct 24, 2016 10:48 am
Location: Nusa Tenggara

Re: Chemo & Radiation BEFORE 1st Surgery - What to Expect?

Postby Green Tea » Thu May 30, 2019 10:58 am

Rock_Robster wrote:There is a great (long) thread called “surviving radiation for rectal cancer” - I’d suggest searching for that and having a read through as a starting point...

Here's the link:

Surviving radiation for rectal cancer
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=32621

Please note that the thread now has 263 posts, with comments coming from a wide range of patients. There's a lot of good information there, but be sure you clear anything major with your doctor. Your husband is having 'neoadjuvant chemo/radiation, prior to surgery, and with no temporary ileostomy in place'. When you read posts on that thread, try to determine if the comments are coming from someone in the same situation as your husband (i.e., male, similar age, has very low tumor, has similar TNM stage, has internal/external hemorrhoids, etc., etc.)

Note: Chemo/radiation is not the same in all hospitals. Some use constant radiation intensity for all 25 sessions; others use a sliding scale with the highest intensity during the last week. Some use Varian machines; some use Siemens machines. Some have you lie on your back during the session; others have you lie on your stomach. You have to check with the radiation oncologist. You have to ask the right questions. You have to always pay attention to the fine detail.

With a very low tumor, the targeted radiation may also hit the lower spine and cause tailbone pain, where it becomes painful to sit down. The internal and external hemorrhoids may also be in the line of fire and require special attention and special kinds of prescription creams that do not decompose under radiation. You have to check on everything, because every patient is different, and your case may require special attention.
Last edited by Green Tea on Thu May 30, 2019 11:38 pm, edited 4 times in total.

CF_69
Posts: 109
Joined: Sat Dec 22, 2018 9:44 pm

Re: Chemo & Radiation BEFORE 1st Surgery - What to Expect?

Postby CF_69 » Thu May 30, 2019 11:02 am

The other thread does have a lot of info.

I think the biggest factor is where the tumour is. Mine was basically rectosigmoid, so quite high up. I didn’t have many of the symptoms that a lot of people do have.

Think preventative. Wash instead of wiping. Keep things off your skin that could burn. Listen to your doctors and nurses. Tell them what’s going on even if it’s embarrassing.

He’ll get through it.
47 at diagnosis
Rectosigmoid junction
Adenocarcinoma
2.8 x 1.8 x 3.5 cm
G2
T3N0M0
CEA:
December 2018 - 1.9
September 2019 - 2.5
March 2020 - 2.3
September 2020 - 2.5
Xeloda / radiation x 25
Laparoscopic LAR April 2019
0 of 12 nodes
Stage 2A
4 cycles of adjuvant Xeloda
MRI on liver for 2mm hypodensity not suspicious.
Clear CT - September 2019

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Green Tea
Posts: 202
Joined: Mon Oct 24, 2016 10:48 am
Location: Nusa Tenggara

Re: Chemo & Radiation BEFORE 1st Surgery - What to Expect?

Postby Green Tea » Thu May 30, 2019 12:09 pm

SilverWedding wrote:... Surgeon wants to shrink tumor BEFORE surgery to offer more margin so that he can do TEMPORARY colostomy and then reroute back to rectum in winter. I sure hope this works. Thankful that surgeon thinks it will.

First, I would suggest that you create a signature telling what your husband's diagnosis/TNM staging is, and what specific kinds of surgeries the surgeon has in mind. On this message board, a signature is essential if you are posting on different threads and you want people to always know what your diagnosis and treatment history is. People will not be able to easily find what you said earlier on different threads. They need to have all of your important information easily accessible at a glance. This is why a signature is so important when you are asking other people for informational support.

Create signature
https://coloncancersupport.colonclub.com/ucp.php?i=ucp_profile&mode=signature

Now, about your surgeon's plan - - do you know exactly how the surgeon intends to do the "reroute back to the rectum"? There are several ways to do the hook-up. For example, there is one called:

Stapled Transanal Rectal Resection (STARR)
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=53914#p428344

But there are other methods involving stitching the two sections of colon/rectum together by hand. Do you know what the surgeon intends to do, given that the region where the radiation will be targeted will probably be very fragile when it comes time to do the reconnection? In my opinion, it's better to ask now rather than later.
Last edited by Green Tea on Thu May 30, 2019 11:56 pm, edited 2 times in total.

Soccermom2boys
Posts: 218
Joined: Tue Nov 10, 2015 10:29 pm

Re: Chemo & Radiation BEFORE 1st Surgery - What to Expect?

Postby Soccermom2boys » Thu May 30, 2019 8:51 pm

Silverwedding—good to hear you met Dr. Denstman and liked him and most importantly have a plan. Having a plan makes a huge mental difference for sure. You don’t have a signature so what stage is your husband’s cancer? And it sounds like rectal not colon because he is doing the chemo radiation, which wouldn’t happen with colon cancer. I had to have a permanent colostomy because of how low my tumor was so I didn’t have a second surgery like he will, but my understanding is usually that second surgery comes after the chemo—which generally starts 6 weeks after surgery. It is nice that Dr. Denstman works closely with the HFG Cancer Center— I assume you are scheduling an appointment with both an oncologist and radiologist from there?
If you are able, send me a private message and we can converse privately regarding HFG, Dr. Denstman, etc. I did read your other post regarding insurance, but that I don’t know enough to help you out with as I have private insurance through my husband’s employer. Perhaps we can even meet up and having an actual person to talk with will help. This forum has been an absolute god-send, I wish I had had the chance to meet up with someone on here during that time.
8/3/15 Went in with a hemorrhoid, came out with a tumor
8/12/15 Biopsy from colonoscopy confirms RC (45 yrs old--zero family history!)
9/21 - 10/29/15 chemorad 28 tx (with Xeloda)
12/17/15 APR with perm colostomy
Pathology report stages me as IIIA (T2N1M0)--1/15 LN detects cancer
2/3/16 chemo port inserted
2/8-6/2/16 8 rounds of Folfox

User avatar
Green Tea
Posts: 202
Joined: Mon Oct 24, 2016 10:48 am
Location: Nusa Tenggara

Re: Chemo & Radiation BEFORE 1st Surgery - What to Expect?

Postby Green Tea » Fri May 31, 2019 4:24 am

Here are a few other suggestions that may help you navigate the system at your hospital

  • Patient portal - Your husband can request an internet Patient Portal so that he can have early access to his scan results, lab results, etc., whenever they become available. He should request to have the portal set up if he has not done so already.

    https://mydoctor.christianacare.org/portal/my-account/requestpatientportal/default.aspx

    https://christianacare.org/patients/myhealth/
    .
  • Patient Navigator program - The hospital already has a Patient Navigator program in the cardiovascular area. You can check if the Graham Center has a similar program in the cancer area. If so, it would be good to have a Patient Navigator (i.e., Nurse Navigator) assigned to your husband so that your husband can have up-to-date information about how his treatment plan is being handled at the Graham Center.

    https://christianacare.org/services/cancer/cancersupportservices/caremanagement/

    https://www.oncolink.org/frequently-asked-questions/cancers/lung/general-concerns/role-of-the-nurse-navigator-in-cancer-treatment
    .
  • OncoPilot resources - "This (OncoPilot) guide has been developed to give you suggestions on ways to make a new diagnosis of cancer easier and to help you make the best decisions during this emotional time. It is important for the patient to become an active member of his or her healthcare team."

    OncoPilot - Navigating the cancer journey
    https://www.oncolink.org/oncopilot

    Many useful resources on that webpage, including over a dozen different downloadable logfiles and checklists:
      Appointment List 125.39 KB
      Blood Counts Record 158.73 KB
      Calendar Pages 96.4 KB
      Cancer Therapy Treatment Summary 501.39 KB
      Chemotherapy Biotherapy Record 129.81 KB
      Family History of Cancer 122.32 KB
      Hospitalization Surgery Record 126.98 KB
      Laboratory Tests Record 123.64 KB
      Medication List 129.25 KB
      My Insurance Information 178.23 KB
      Provider List 122.66 KB
      Radiation Therapy Record 174.93 KB
      Radiology Diagnostic Tests Record 126.46 KB

Last edited by Green Tea on Fri May 31, 2019 8:03 am, edited 1 time in total.

User avatar
Green Tea
Posts: 202
Joined: Mon Oct 24, 2016 10:48 am
Location: Nusa Tenggara

Signature update?

Postby Green Tea » Fri May 31, 2019 8:01 am

Thank you for creating an initial signature. It would be good now if you could update the signature so that it contains more of the critical items from the signature template below. These items would come from the initial colonoscopy report, the colonoscopy biopsy report, the lab reports and the scans that have been done to date. From what you have given so far, it looks like the initial staging would be something like T3N1M0, or Stage III equivalent. Could you check with the surgeon to verify what your husband's actual stage is? Could you also check if they sent the biopsy out for MSI testing? (This is important.) It would also help if you could give the projected start date for the chemo/radiation sessions. Thank you.

Signature template
Last edited by Green Tea on Sat Jun 01, 2019 2:39 pm, edited 1 time in total.

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kellywin
Posts: 492
Joined: Wed Jan 23, 2013 4:46 pm
Location: Northern CA

Re: Chemo & Radiation BEFORE 1st Surgery - What to Expect?

Postby kellywin » Fri May 31, 2019 2:56 pm

My 2 cents:

Lotion - Cetaphil or Cerave, lotion up as soon as his session is over, put it everywhere in the radiation field, and I mean EVERYWHERE, crack included, I did this in the dressing room right after the radiation session before going back to work
Cetaphil soap - you need something mild to wash with, this one comes in a bar, but it's really mild, don't use any type of regular soap in the area
Calmoseptine - this is a must during the shitting razor blades phase
Gloves - for the application of the calmoseptine for the above mentioned razor blades phase
Lotomil - a prescription anti-diarrheal, way better than immodium, ask early and have it on hand just in case.
Rinse & Repeat 8)

How you can help him emotionally is a different story. My advice, treat him as your husband, not as a patient. Don't be his "caregiver", be his spouse. Be real, if you're afraid, admit it, tell him it sucks, just be there.

Good luck to him & you.
Kelly, mom 14 yo girl
Dx 11/15/12 Rectal Cancer @ age 40
Stage IIIC
5.5 weeks Xeloda & Radiation - complete 2/5/13
Colectomy 3/12/13, 7 of 14 nodes positive - no ileo
4/24/13-8/20/13 - 5 rounds Xelox, 1 Xeloda only


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