newly diagnosed

[Coral]

Hi,

I am new in the cancer club. My husband was diagnoised with stage IIIB colon cancer in June 2024. He will start his four rounds of Kapox chemo for 3 months from September. I am very worried and wondered if many patients like him can be cancer free. I am very worried about our future. any advice would be greatly approeciated.

best wishes,
Coral

Edinburgh, UK

[Pagola44]

I am also stage 3b,
1 year cancer free since my treatment
there are many of us here who have had worse diagnosis and survived long term
all the best

[Green Tea]

Hi,

I am new in the cancer club. My husband was diagnoised with stage IIIB colon cancer in June 2024. He will start his four rounds of Kapox chemo for 3 months from September. I am very worried and wondered if many patients like him can be cancer free. I am very worried about our future. any advice would be greatly approeciated.

best wishes,
Coral

Edinburgh, UK

Hello Coral -

Welcome to rhe Colon Talk forum, and I'm so sorry to hear that your husband has been diagnosed with colon cancer -- but there is hope.

Here is some information about CAPOX compiled by the doctors at The Royal Marsden Hospital (NHS)

Oxaliplatin and capecitabine (CAPOX) chemotherapy for bowel cancer (February 2023)

https://patientinfolibrary.royalmarsden.nhs.uk/document/download/1200

If you download this document and read it thoroughly. you will be much better prepared to deal with the upcoming 3 months of CAPOX therapy.

........
ALSO:

Tips on minimizing XELOX (CAPEOX) Side Effects (2017)
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=59287&p=469490#p469490

[Coral]

Thank you so much for the information and support. Hope that we will be able to go through this diffcult time.

[Green Tea]

.

There are some things that your huband can do before the start of CAPOX that can improve the outcome. For example:

- Tooth cleaning and flossing between the teeth, to remove pockets of bacteria near the gum line. This is to help prevent mouth sores due to chemo.

- Pedicure, to trim the toenails short. and remove pockets of bacteria and fungus near the toenails. This is to help prevent foot sores and to help prevent the loss of toenails.

- To buy pairs of extra large socks that are easy to put on, and a pair of extra large bedroom slippers that will be easy to put on and that will not put any excess pressure on the sides and soles of the feet. This is to minimize painful problems associated with Hand-Foot Syndrome that might develop from capecitabine..

- To go to the pharmacy and medical supply store to buy, in advance, the things that you will surely need in order to cope with the most likely chemo side effects. For example, buy some packets of Oral Rehydration Salts to take in case heavy diarrhea causes loss of fluids and loss of electrolytes; cream for skin problems; soft toothbrush and mouthwash for oral hygiene; antibacterial soap and gel

- To shower and shampoo with anti-bacterial soap or gel before going in for each oxaliplatin infusion session. This is to help minimize bacterial presence in and around the area where the IV cannula is inserted and to minimize septic infecton of the blood.

Treatment for mouth sores caused by chemotherapy
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=43736&p=312243#p312243

Treatment for hand-foot syndrome (HFS) caused by chemotherapy
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=59396&p=471025#p471025

[Coral]

Really appreciate these tips! Thank you again!

[Green Tea]

Hello Coral,

Thank you for preparing a signature for your very first post. It's very helpful for us to have a signature to look at when a newcomer starts posting here, even if it's an incomplete signature.

For your information, here is what an expanded signature would look like in your case. The items highlighted in red below are missing from your current signature and could be added in order to make a more complete profile of the form typically used by medical teams for evaluating a patient's suitability for specific treatments.

An updated expanded signature like this would be far too long to fit in the Colon Talk standard signature space, so it would have to be posted separately in a special topic, with a Subject line such as "My current signature", if you ever wanted to share it with members here.

==============================================================
Coral's Signature
Caregiver to Husband:
Patient gender: Male
Patient age at DX: ???
DX date: mm/yyyy
Baseline CEA value: 8 ng/mL
Tumor type: Adenocarcinoma? villous adenoma? signet ring-cell carcinoma?, etc.
Tumor Location: . If ColonCancer, then cecum? ascending colon? hepatic flexure? transverse colon? splenic flexure? descending colon? sigmoid colon? or recto-sigmoid junction?
Tumor size (in mm or cm): ???
Tumor grade:

G1: Well differentiated (low grade)
G2: Moderately differentiated (intermediate grade)
G3: Poorly differentiated (high grade)
G4: Undifferentiated (high grade)

TNM code (clinical): cT3N2aMx
Pathology Stage: ypT3 ypN2a (Stage III-B)
Surgery date: mm/yyyy
Surgery type: Laparascopic vs.robotic vs. open surgery; Colectomy? hemi-colectomy? sigmoid-colectomy?, etc...
Surgical margins: R0
Positive lymph nodes: 5/24 lymph nodes positive,
Lymphovascular invasion (LVI): LVI+,
Perineural invasion (PNI): PNI+
Post-surgery CEA: 2.7 ng/mL
Mets (Location of remote metastases, if any): None detected so far
MSI / dMMR status (Required for all CRC patients, regardless of stage) :MSI or MSS?
Body Mass Index (BMI): ???
Lynch (HNPCC) status (if known): ???
KRAS/BRAF/HER2 status (Only required for Stage IV patients, but highly recommended for high-risk Stage III patients): N/A for now.
Co-morbidities currently under treatment: Type II Diabetes? Cardiovascular disease? Thyroid insufficiency? High cholesterol? Auto-immune disease? Obesity (BMI > 30)? Nicotine addiction?
Adjuvant therapy: Starting 4 cycles of CAPOX chemo on 09/09/24
Next CT scan date: mm/2024

#########################
How to create a signature
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=52681&p=421597#p421597

NOTE: The post in the link above has even more detailed profile information in its ADDENDUM section.
#########################

[jts]

Hi,
I'm sorry about your husband's diagnosis. Being stage IIIb he has a non-trivial risk of recurrence. Even if it's something like a 20% chance, you need to be vigilant. Work out a schedule for follow-up scans and monitoring his CEA (which appears to be a good indicator in his case).

If he has a recurrence, it will most likely be in the liver or lungs. With regular scans you will catch it early, and it will be treatable.

It sucks, especially for the first year, but it could be much worse.

[Coral]

Thank you very much for all your advice. I have also updated my signature to provide more clarity regarding my husband's cancer

[Green Tea]

Hello Coral,

Thank you for updating your signature. From your update we can now make a better estimate of your husband's general risk factor profile as well as the range of treatment options available to him in the future if he were to ever have a recurrence.

You have already had replies from two other members. That's good, especially when they have been diagnosed originally as T3N2a like your husband. Hopefully more Stage III members will chime in later with their own views.

Meanwhile, I have my own view of your husband's situation, but I have no Stage III experience myself (I'm Stage II, in remission). All of my opinions are based on what I have read here on this message board or on the Internet in the past, and I have never discussed Stage III matters with any of my doctors.

Here are my current views (which could change as more information becomes available):

1. Overall impression: This seems to me to be a Stage IIIB diagnosis with moderate risk for recurrence. The patient will be having 4 cycles of CAPOX, which, under ordinary circumstances, would be quite sufficient to eliminate most if not all of the micro-metastases still circulating in the body after a successful R0 resection. However, these may not be "ordinary circumstances" in your husband's case, for the following reason(s):

2. Treatment delays. According to your signature, the CAPOX adjuvant therapy will not start until more than two months have elapsed since surgery. Normally, a maximum of one-month or 5 week delay is standard. In your husband's case, the extra month of delay means that whatever cancer cells or micro-metastases were still circulating have now had an extra month to proliferate or mutate or whatever.

I do not know why they have been so slow in starting up the CAPOX regimen, but I suppose it is due to a backlog of patients needing access to the Infusion Center. Perhaps September 9th was the first available opening at your hospital for a new patient. But my assumption might be wrong.

In short, what this means to me is that a 3-month CAPOX regimen might not be enough. It might mean that a 6-month CAPOX regimen would be better, or perhaps the current 3-month CAPOX regimen could be supplemented by another 3 months on capecitabine only (i.e., "Capecitabine monotherapy" for 3 more months at least).

3.Quality of medical staff. Your husband's medical team would include at least a surgeon, a pathologist, and an oncologist. I have no questions about the quality of the surgeon and pathologist. They seem to have excellent credentials, probably with Fellow of Royal Society of Surgeons (FRCS) certifications or equivalent. My hesitation is with the oncologist, who might have an FRCP (Royal Society of Physicians) certification, but I'm not so sure.

Given the outcome of the surgery and pathology reports, I don't see why an oncologist would recommend only a 3-month CAPOX regimen and nothing more. Perhaps it is due to severe limitations at NHS that restrict what an oncologist is allowed to prescribe for a given Stage DX. Perhaps it is because the oncologist is not flexible enough to consider anything more than traditional Standard of Care (SOC). Or perhaps it is the case that this oncologist is too new and too timid and afraid to try anything except minimal standard care. NOTE: There are other possibilities of care beyond SOC, including Complementary and Alternative Medicine (CAM) therapies such as vitamin therapy or Traditional Chinese Medicine (TCM) therapy, etc. In short, my impression about the oncologist is that he/she is either inflexible or his/her hands are tied due to an excessive bureacuracy at NHS.

Your husband might be able to get further information on doctor qualifications the next time he has an in-office appointment. He can check what kinds of certificates the doctor has on display on his/her office wall.

4. Other thoughts: For now there is nothing particularly pressing to do except to get all prepared for the start of CAPOX therapy. The most urgent things now are:
a. To insure that there will be a good, recent, and comprehensive pre-chemo blood test panel done (including CEA and CA19.9) that can serve as a good baseline for subsequent blood tests.
b. To insure that there will be a good, recent CT scan done that can serve as a proper pre-chemo baseline scan -- probably a Chest-Abdomen-Pelvis (CAP) scan with contrast, either IV contrast, oral contrast (or both), depending on doctor's advice.
c. To insure that the subsequent CT scan done after the start of CAPOX will be scheduled at the earliest reasonable point in time.

This is because there is a certain urgency in having up-to-date information that might indicate a progression or a recurrence, in which case it would be important to have a contingency plan for what to do about the possible recurrence at the earliest possible date.

In other words, "Time is of the essence" when dealing with potential recurrences. The earlier the better, or ..."The early bird catches the worm", i.e., "An early surgery/ablation can completely annihilate a cancer recurrence", or "A stitch in time saves nine", i e., "Zapping a recurrence when there is only one of them is better than waiting around until this recurrence has had time to spread or proliferate".

That's all for now ...

==============================
Your updated signature:
(Husband) age at DX: 42
Pre-surgery: 8 ng/mL
Adenocarcinoma, sigmoid colon, 28mm, T3N2a (Stage III-B), G2, 5/24 lymph nodes positive, LVI+, PNI+, MSS
Surgery date: June/2024, Laparascopic, R0
Post-surgery CEA: 2.7 ng/mL
KRAS/BRAF/HER2 status: No genetic mutations found
Adjuvant therapy: Starting 4 cycles of CAPOX chemo on 09/09/24
Body Mass Index (BMI): 22.1

[horizon]

Hi,

I am new in the cancer club. My husband was diagnoised with stage IIIB colon cancer in June 2024. He will start his four rounds of Kapox chemo for 3 months from September. I am very worried and wondered if many patients like him can be cancer free. I am very worried about our future. any advice would be greatly approeciated.

It's an awful phase where you are because there are so many unknowns. I was scared out of my mind as a stage 3 in 2011 and I'm still here. You never know what will happen (I mean that in a good way).

[Green Tea]

Hello Coral

As you might have guessed from my previous posts, I am a bit concerned about the possibility of multiple delays in your situation there, from the initial diagnosis, through staging, then treatment and follow-up.

For maximum survival benefit in the Stage III medium/high risk context, I think it would require that all of the steps (e.g., screening, diagnosis, staging, surgery, adjuvant chemo, post-chemo surveillance. etc.) be done in quick succession in order to minimize the time available for existing micro-metastases to grow and spread to remote areas. If there are multiple delays in the sequence that occur one after another, these delays can accumulate and cause the situation to be more severe and more unmanageable than necessary.

For example, if your husband's symptoms had been diagnosed properly a few months or a year earlier, the tumor might have been a smaller, more easily treatable Stage I or Stage II tumor. Now it has become a T3 tumor with spread to 5 local lymph nodes, with LVI+ and PNI+ risk factors present.

This leads me to ask myself whether or not some unnecessary delays might have occurred along the way, and if so, how long were the delays and could they have been avoided?

I am also wondering whether the problem might have been with the general state of the health care system there that might well be understaffed, overworked, and too busy to give the personalized attention necessary for properly diagnosing and treating potentially high risk patients.

What do you think? Could your husband's experience with the health care system there have been better, and if so, in what ways?

[Green Tea]

Navigating the Colon Cancer Maze
Chapter 25 is entitled “The Hidden Burden of Being a Caregiver”.

https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=52998&p=418226#p418226

====
Also:
"Fighting Cancer with Knowledge & Hope", by Dr. R. C. Frank (2012)

"Braving Chemo: What to Expect, How to Prepare, and How to Get Through It" by Dr. V. A. Zavaleta (2019)

"Chemotherapy Survivor Guide: Everything You Need to Know to Get through Treatment ", by J. McKay and T. Schacher, (2009)
.

[Coral]

Thanks for your reply. I really appreciate your response. After speaking with his cancer nurse, I learned that it is standard here to start chemotherapy 8 weeks after surgery.

To be honest, he had major surgery, and he wouldn't be fit enough to start chemo after 4 or 5 weeks, even if we wanted to.

[Green Tea]

Hello Coral,

It might be a bit early to post this particular message right now, given that your husband's CAPOX sessions don't start until next month, but I think I'll post anyway so that you and your husband will have time to review these thoughts before the sessions start.

After the CAPOX regimen begins, there are some things that you as a caregiver can do that would help facilitate the process:

1. For each CAPOX cycle, insure that your husband takes his two weeks of capecitabine pills, according to instructions, each morning and each evening just after eating a meal. Capecitabine is a pro-drug that converts to 5FU chemo only after mixing with food in the metabolism cycle. It's no use taking capecitabine on an empty stomach because in that case the drug will simply be excreted directly without producing much of an anti-cancer chemo benefit.

2. You can monitor your huband's diet to make sure it doesn't contain anything that is likely to be difficult to digest or that might cause nausea or vomiting . He must not vomit up the capecitabine pills just after swallowing them.

3. You can make sure that he drinks enough fluids each day to avoid dehydration and to avoid the onset of kidney stones or bladder stones due to lack of hydration, especially if intense diarrhea is present -- so, drinking at least 8 to 10 glasses of water or isotonic fluids per day is highly recommended.

4. You can clean the bathroom area as well as the bedroom floor with a good anti-bacterial cleaner. Also remove dust particles in and around the bed to eliminate dust mites. You can change the sheets and pillow cases often in order to avoid bacteria accumulating on moist, damp bedding after sessions of heavy night-sweats.

5. You can encourage your husband to get out of bed and do a little exercise each day, like walking around the block or walking back and forth inside the house. This is to get the blood circulating to help excrete toxins that build up in the body during chemo. It's also for avoiding bed sores that might develop if he stays in bed all the time.

6. You can give your husband a sponge bath in bed if he's too tired or weak to get up and take a shower.

7. You can help your husband keep a daily log of side-effect incidence and intensity. This is so that he will have some concrete evidence to show the doctor when the doctor asks about side-effect frequency and intensity. Side effect monitoring is very important because if any side effect reaches Grade 3 (Serious) then chemo must be suspended temporarily until the side effect goes away, and if any side effect reaches Grade 4 (Life-threatening) then all chemo must be stopped forever.

8. At W.H.Smith you can most likely get an A4-size document folder with multiple pockets to keep your husband's medical documents in order: One pocket for blood test results, one pocket for CT-scan results, one pocket for medication scripts/prescriptions, one pocket for insurance documents and other administrative documents, etc., etc. It's important to get paper copies of each and every important document or test result and keep these documents organized in a safe place. https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=43591&p=310303&hilit=folder#p310303

9. If you are allowed to accompany your husband at his doctors' appointments, you could help out by taking notes on what issues were talked about and what the doctor said. This would help your husband focus on the conversation and not have to worry about taking notes, and it would provide a good summary of the meeting for future reference.

10. You can drive your husband to the infusion center so that he won't have to take public transport to get there. Then when he is finished with the infusion session he can just take a taxi to go back home. NOTE: He will not be allowed to drive a car after an infusion session. If you decide to take your husband to the Infusion Center, then you may have to ask permission from your employer to take those Monday mornings off.

11. You can encourage your husband to try to abstain from tobacco and try to maintain a good weight for the duration of his treatment and follow-up. This is to minimize the build-up of systemic inflammation which can be a precursor to cancer. Also, abstaining from alcohol would probably be a good idea, too