New - Daughter to Father with Stage 3B Colon Cancer

[salouma]

Hello All,

My name is Salma (23 yo). I am new to this forum and cannot express how appreciative I am of everyone on here who shares their stories and advice.

My father (64yo) was diagnosed with colon cancer during a colonoscopy on 12/11/2018. The 3 cm sigmoid tumor was biopsied and confirmed to be cancerous. On 1/31/2019 he underwent a laparoscopic partial colectomy and was in the hospital for three days. 2/13 lymph nodes were cancerous and there is a nodule in his lungs (the onc said it is small and not to worry about it now) and the cancer was determined to be stage 3B. The oncologist has recommended the Xelox route for him and placement of a port. His port was put in this week on 2/25/2019.

This whole ordeal has been a rollercoaster of emotions for me and my family. We were in the middle of moving from our childhood home when the cancer was found. I even fell and sprained my foot pretty badly a week earlier. And two weeks ago, my mom found two lumps in her breast during a mammogram. We are waiting on those to be biopsied. Just too many bad things happening at once. I am trying to be strong and positive for my dad and siblings but I do not know how much more I can handle. I work and go to school full time. It is my last quarter at university before I graduate and I have not been able to focus on any of my work. I cannot even begin to imagine how my father feels. He says he is okay and wants to take it one day at a time but I feel like he is struggling. He has been recovering from the surgeries really well but I can tell he is worried about the chemo coming up soon. And it is not helping that people around him are trying to scare him away from chemo, telling him he does not need it, and giving their two cents when it was not welcomed (even though none of them have any medical affiliations/degrees/jobs).

We have an appt with the oncologist this Tuesday before he starts his chemo treatment. I was wondering what should we expect from Xelox as far as side effects and what preventative measures can he do to help ease them? And if anyone has advice on how I can be a helpful, supportive caretaker, anything would be helpful.

Thank you all!

[martd]

Hi Salma,
The beginning is exactly the way you described , a rollercoaster of emotions, so hang in there it does get better. After settling into treatment things seem to calm down. As for chemo I can tell you personally without it I would not be alive today, Tell your dad to listen to his doctors and not people getting their nonsense information from facebook. Praying on people with cancer is big business unfortunately. Oxailiplatin is one of the drugs in Xelox, it has different side effects, cold sensitivity to food, drink and also touch, Be sure he eats and drinks at room temperature. He may experience pain in his jaw with the first bite. It's very important for him to communicate all side effects to his care team especially neuropathy, if he starts to feel numbness in his hands or feet he should let them know. And staying hydrated is important. Maybe more people with Xelox experience will chime in with tips, and also search this site for threads on side effects theres alot of helpful info in here. So again, hang in there you'll get through this and I wish the best for your dad and hope everything turns out ok with your mom.

Dan

[retiredteacher]

Hi Salma, I finished the Xelox last year. While not the most fun thing in the world, it is definitely doable. You can research this site for people's experiences - there are many similarities. Sensitivity to cold, first bite syndrome from the oxiliplatin (sp?) It is important that he stay well hydrated and communicate with his nurses so that the doc can adjust medications if the side effects get out of hand. Many, many people maintain their normal schedules - or some percentage of - during treatment. Everyone is different. My oxi was eventually cancelled due to side effects and the last round of Xeloda dropped due to liver side effects. You might want to get some insight on the steroids they administer to lessen the side effects - I did have an emotional reaction which I didn't understand immediately. Ativan helped a great deal to get much needed sleep. Best wishes - keep us advised on progress!

Terri

[hiker]

Hey salouma,

Sorry you have to be here at such a young age worrying about your dad.

You say the scans picked up a nodule in your dad's lung, but the oncologist has currently dismissed it and has staged him as 3B. If I were in your dad's shoes, I would want to know for sure whether that nodule is cancer or not. If it is, it changes everything. He would then be stage 4 which is the big leagues. I'm not trying to frighten you, if it is stage 4 it can still be treated - just not sure if the treatment would be the same. It may involve an ablation or surgery in addition to chemo.

If your dad is not being treated at a major cancer center, I would urge him to get a second opinion at one. They see lots of cancer cases that other facilities won't touch.

I wish you the best.

hiker

[boxhill]

I'm sorry that your family is going through such a tough time! You are a good daughter, and speaking as a parent I know that your parents deeply appreciate your support. Continuing to speak as a parent, I'm pretty sure that the #1 thing you can do for your parents' peace of mind right now is graduate! So put that up there on your priority list and get it done, even if it isn't perfect.

Regarding the lung nodule: at least 60% of the lung nodules detected by CT scans are not cancer, especially if they are small. Your father's oncologist is doing the right thing: they will keep an eye on it in future scans, and take steps when and if necessary.

I think you father has the right attitude. I made a personal vow when I was diagnosed but hadn't received the pathology report that I wasn't going to freak out about anything until I knew I had a reason to freak out. This didn't stop me from becoming informed, and in fact the more informed I became, the less inclined to freak out I was (and am).

It is very unfortunate that your father has people around him who fall for all of the unscientific crap out there and try to frighten him away from chemo. Another thing you can do for him is tell them straight out that he is making decisions informed by evidence-based medical science, and that while you appreciate their good wishes, they should keep their opinions regarding treatment to themselves because it is NOT helpful to him. With some people there is no point in being diplomatic. They will not take the hint. Just tell them straight out, but kindly and politely, even if it means calling them or emailing them on your own. I personally have been very lucky that I was only approached by one person peddling essential oils, but others are plagued by friends and family and I know it can be very dispiriting.

Do you know WHY your father's onc recommends this course of treatment vs FOLFOX? I'm sure there are good reasons, but it is important to understand. The positive would probably be that he doesn't need to be on the pump for 48 hours. The negative may be that more people seem to suffer from hand/foot syndrome on Xeloda. It is important to keep ahead of that, if it happens to him, with effective moisturizing. (I've found that Aquafor is particularly great for the feet, but I don't have H/F. Those who have dealt with it can help you out.)