Endoscopy nurse with colon cancer

Can you start again at the beginning and dumb it down for me? Ha ha. To be honest, I didn't understand some of what you described. And I don't know if mine was mucinous. Is that normally something they'd tell a patient? For all I know it was. I can't even remember what the letter(s) are after my stage. And I don;t want to ask because it'll send me running to see what it means on Dr Google even though I know the futility of that.

I was told that there was an oncologist at the cancer centre I go to that was diagnosed with colon cancer and had the surgery and just a few days after the surgery died of a blood clot, likely from it. I thought that was ironic. And sad.

Anyway, I hope you'll get some answers on here. Welcome to the forum.

Jan

EndoRN1985 said:

Kim

Hey Kim, thank you. I elaborated a bit above, and was hoping for some advice on dealing with the effects of chemo, particularly maintaining an active lifestyle with my job and two kids. I'm used to working irregular hours from being on call, but I think this might be on another level entirely. Thanks for your response! 

 

Andrew

  I am not sure What chemo they will reccommend. When I was dxed with stage3c into six nodes they suggested that 5fu//leucovorin was the best bet. It nearly put me into renal failure due to dehydration. They then changed to 48 sessions of 5fu enhanced with levamisole.  Levamisole was banned in 2001 for fatal side effects. The only use for it now seems to be as a anti-parasitic in animals and by drug lords to cut cocaine. It treated me poorly but I still managed to work right thru chemo and live a life, if not totally normal. I was 48 at the time. I am now 69 , still cancer free and still working 4 days a week. I have found that there was a lot of collateral damage to me from chemo. It caused stage2 ckd with nephrotic syndrome symptoms. It is controlled well . I take cyclosporine twice a day. I have a lot of heart problems  ,mainly neurological with premature ectopics and atrial flutter//fib. I have severe peripheral neuropathy in both legs. I don't take anything for the neuropathy but I am on warfarin for my heart. I don't drink or smoke and I eat a boring diet of foods that I have found that do not compromise my health. Surviving survival is not easy but over 21 years of survival up , it beats the alternative. Best of luck, Ron.

EndoRN1985 said:

Hey

I have been prescribed Capox, for 3 months. When I had my appendicitis with rupture, my appendix completely exploded; there was nothing left. I cant believe I worked for a couple days after it ruptured, I didn't feel too bad. They did a thorough look during my colectomy and saw no evidence of other tumor bulk anywhere, but did not take any biopsies of peritoneum. My presentation is one for the books, for sure. I'm actually looking forward to chemo. There are so many unusual factors in my situation, I want to be as aggressive as possible to avoid any risk of recurrence, since muscinous cancer is at higher risk of just that. Thanks for the info of the Facebook group, I will check it out!

 

Andrew

Here's the link to request Colontown membership:

https://colontown.org/colontown-intake-form/

Since you were an infusion nurse before, you probably already know about the hand foot syndrome for Xeloda.  I'd still get a second opinion from a major cancer center about your situation.  I can't but wonder if the cancer found in your cecum is actually a local metastasis of an appendicial primary.  It's a shame no biopsies were performed of the surrounding tissue near the ruptured appendix.  My GI doc told me his Anesthesia doc went in for what they thought was appendicitis and found out he was actuall Stage 3 appendicial cancer.  With how unique your situation is, I wouldn't mess around and get as many expert eyes on your case as possible.

EndoRN1985 said:

Thanks

Interestingly, I went to a major cancer center for my first opinion, and the MD there felt we could just observe. I did not feel at all comfortable with that, so he suggested Xeloda. I went for a second opinion at my local cancer center, who agreed with my opinion to treat more aggressively with Capox. I will look more into treatments for appendiceal cancer, thanks for suggesting that, as well as the FB group. What helped you with hand/foot? I heard biotin mouth wash helped with mouth sores, so will get some of that.

 

Andrew

Which cancer center?

I didn't have to deal with hand foot syndrome.  I did FOLFOX6.  So had the 46 hours of 5FU via pump and a bolus shot initially before the infusion of Oxali. There is some creme I've seen talked about which helped some.  I just can't remember now.  But if no one chimes in here you'll certainly get an answer on Colontown.  And I did hear Biotin helpe with the mouth sores.

EndoRN1985 said:

Thanks

Interestingly, I went to a major cancer center for my first opinion, and the MD there felt we could just observe. I did not feel at all comfortable with that, so he suggested Xeloda. I went for a second opinion at my local cancer center, who agreed with my opinion to treat more aggressively with Capox. I will look more into treatments for appendiceal cancer, thanks for suggesting that, as well as the FB group. What helped you with hand/foot? I heard biotin mouth wash helped with mouth sores, so will get some of that.

 

Andrew

Andrew

Had a similar situation. Right hemi, tumor, spread to one lymph node. T3 N1 M0.

Surgery went well. We too, researched chemo drugs, Folfox infusion versus Capeox. The IDEA study confirmed, 3 months versus 6 months was about a 2.5% difference. We consulted our oncologist about trying the Capeox instead of Folfox infusion. They were slighlty resistant, in that most people in our country do not do well with Capeox due to dietary. EU seems to do well with Capeox because of low levels of Folate. 

We started with 2000 mg morning and 2000 evening. I didnt have any feet or hand issues, did have cold sensitvity, and skin irritaiton, but no mouth sores, no sickness. I did have issues with my lungs feeling on fire if I exerted myself. This sysmtom is very unique and may be due to my acid reflux. My dose was reduced to 1500 morning and 2000 evening, 12.5% reduction. This helped dramatically with the lung issues. i will begin my fourth session in a week, concluding my 3 month therapy. My Dr. would like to see 6 months due to my cancer cell is an aggressive cell. Again this would only be about a 2.5% edge. The Capeox has been very easy for me, so I will probably continue my sessions after the 3 months, as long as the side effects are tolerable.   No diarhea, nausea or anything.   I was advised not to take B9 supplements (folate)with Capeox.   Siteman (Barnes Jewish Hospital) in St. Louis Mo is my hospital. 

Hope this helps and hope your experience with Capeox is as easy as mine.  

Alan

573-434-9653 if you want to visit

EndoRN1985 said:

Awesome. Thank you

This is great to hear,  sounds like we have almost identical presentations. I appreciate your information, sounds like it won't be as bad as what I've heard, mostly horror stories. Let's keep in touch and see how it goes both during and after treatment!

My next appointment is 6/18. Are they proposing you also recieve Oxaliplatin?

EndoRN1985 said:

Oxaliplatin

Yeah, that is the plan. I am waiting to hear back from one oncologist if they will add anything with the assumption it started as appendiceal. 

One more quick note to hopefully help you through your treatment. We went into treatment anticipating horror stories, but all in all, it hasn't been that bad. We walk every day, go to dinner occasionally, (don't get around sickness, could delay your treamtment), work in the yard everyday, take rides in the jeep, pretty normal life.  

If your treatment plan is similar to mine, it will be two weeks on and one week off. The advantage of this plan is you will only have 4 sessions (treatments) if you are only doing 3 months, as well as the one week off during each session, is great. I wanted to add, CapeOx is elimanted 97%+- through your urine, so drink a lot of fluid. Also, take the pill with your dinner and breakfast, and not on an empty stomach.

I should mention the Oxaliplatin is a little different. Because you are on a 3 week treamtment, the dosage of OX is higher than the 2 week treatment plan. Approximately 50% higher. For me 130mg vs 85 mg (times Body Mass). Placing the infusion apparatus in your port at time of treatment is nothing. A shot in your shoulder, stings more than you will feel from placement. Kick back for a couple hours, read a book or sleep. Nothing to it at all. Oxaliplatin seems to wear off after approx. 7 days from infusion. i have a few issues from the drug, and will probably discontinue. (ox only adds approx 8-12% edge)Typically day 3-5 makes me extremely tired and i have to lay down during the day and rest. Good movie or book time. Also have some foot and hand numbness. Sleep when you feel like it, so your body can recover. The drug also causes my jaw to cramp when I first bite down on food, and skin irritation. Non of the symptoms are terrible, just annoying. If you can walk every day, and get your heart rate up, seems to help keep the devil at bay. Again, the drug pretty much wears off after day 7, however, each session seems to be a little more acute in regard to the symptoms. 

Okay, hope you do well. Don't stress about treatment. The Dr's seem to have it down. Don't be shy about telling your Dr. to adjust your dose amount down. Makes a huge difference. 

Alan