The Colon Club

Aqx99 wrote:

susie0915 wrote:

NHMike wrote:Thanks for the note on First Bite - first time I've heard of that one.

There are a few on here who have had it. I don't think it's a common side effect. The first time was shocking, after that I was ready for it. It is weird though, you have that pain when you take your first bite of something, then any subsequent bite is fine. Only lasted a day or two.

I have had it, as well. I hate when I forget about it and start to eat and it hits. If I remember, I can be ready for it.

That is so true. There were a couple times I just bit down and wow. If I remembered, would go slowly and rub my jawline. It is a shocker the first time though.

I have first bite pretty bad. It’s been one week since my infusion and it’s only just now starting to go away.

I am not sure I experienced the first bite everyone else has since I wouldn’t describe the experience as necessarily painful, but I definitely went through something similar. When I took the first bite of something my tongue would react as if I had eaten something extremely sour and feel really weird for a minute. Then it goes away.

Surgeon rang me last week about my concerns, said he operates at "12 weeks, 16 weeks, 20 weeks etc" and has no concerns for me at 20 weeks, Dec 18th.
Put my mind at ease for a little bit, I guess it's not an exact science and they base there decisions on what's in front of them.
Still hanging for the surgery even though these are my last days feeling "complete" I guess, but the mental limbo is astonishingly hard. Thought I would enjoy it more but I really can't enjoy anything other than progress.

sealdog wrote:Surgeon rang me last week about my concerns, said he operates at "12 weeks, 16 weeks, 20 weeks etc" and has no concerns for me at 20 weeks, Dec 18th.
Put my mind at ease for a little bit, I guess it's not an exact science and they base there decisions on what's in front of them.
Still hanging for the surgery even though these are my last days feeling "complete" I guess, but the mental limbo is astonishingly hard. Thought I would enjoy it more but I really can't enjoy anything other than progress.

I had those same thoughts about my last days of what your brain says is “complete.” Nervous as hell. I had a LAR/TME (which you should be in line for) with a tumor at 7cm.

I recovered great from the LAR, although I got a temp ostomy and lost 90% of my rectum. Reversed that and two months later I’m doing great. No serious complaints and life is normal. Hope you have the same -

Basil wrote:I had those same thoughts about my last days of what your brain says is “complete.” Nervous as hell. I had a LAR/TME (which you should be in line for) with a tumor at 7cm.

I recovered great from the LAR, although I got a temp ostomy and lost 90% of my rectum. Reversed that and two months later I’m doing great. No serious complaints and life is normal. Hope you have the same -

Cheers Basil. My tumor is a t3 and at 7-8cms so I'll be heading down the same path, hope to have the same outcome

Surgery this Monday. Nervous as hell but going to try to enjoy the weekend, fancy dinner Saturday night as it might be my last for a long, long time!
Any tips for an extended Hospital stay? I imagine I'm going to be out of it for days so won't be worried about comforts until maybe the last couple of days.

sealdog wrote:Surgery this Monday. Nervous as hell but going to try to enjoy the weekend, fancy dinner Saturday night as it might be my last for a long, long time!
Any tips for an extended Hospital stay? I imagine I'm going to be out of it for days so won't be worried about comforts until maybe the last couple of days.

I focused on preparation and process the few days before surgery as the directions are detailed and many and my logistics were complicated.

Have someone bring you your things as they don’t like to hold a lot of things for you and don’t bring heavy things as you may not be able to lift and carry them. There’s a great deal of detail in my long thread going over my prep and what I went through after surgery. I also did a lot of strength training in the weeks before surgery to help speed recovery.

Sealdog,

Best of luck for your surgery.

I also have Lynch. Genetics counsellor told me we ( those with Lynch) all probably have a common ancestor somewhere up our family tree.

Have you discussed immunotherapy with your oncologist.

Awareness / acceptance of immunotherapy is still low especially in Onco surgeons.

Once again , Best wishes..

1) Would you go down this path at my age with treatment? It seems old hat, that much better alternatives might exist.

2) Surgeon told mum that her and I are "100% Lynch" based on what he has seen. He was amazing with Mum but I am struggling to accept his treatment plan armed with more information about our situation (Immunotherapy?)

1.) I would def. research through reviews for a great board certified colorectal surgeon. I found my mom's through Yelp.com! USC colorectal surgery center had really good reviews and I interviewed some of the patients to hear their experience and they were all very pleased. We had to drive an hour each way, but it was really worth it. They are the best in the country so that made me feel more comfortable. The orig. surgeon the GI wanted to send us to had HORRIBLE reviews. I even had to switch my mom's insurance around so she would get seen at the best hospitals for her TX and surgery. My mom had her surgery on 10/17/17 and now has a temp ileostomy pouch. I didn't understand it either but now it's all a piece of cake. My mom is used to it and doing much better and had a "NEAR PATH. RESPONSE" (no lymph's effected) they got all the cancer but she will do clean up chemo for the next 6 months to get the microscopic floating watchamacallit's, to prevent any type of spread or new growths.

2.) Prior to my mom getting diagnosed, her Dr. thought she had bone cancer, lupis, etc. She actually had osteoporosis.. I actually diagnosed my mom and sent her to get a colonoscopy stat cause I knew in my heart something was very wrong after she told me what her symptoms were. She was always in pain in her pelvic area.. I am so mad that my father or brother never saw her in so much pain while living with her. You go with your gut feeling but do know to go to an experienced Dr. that specializes in this type of colorectal surgery. (LAP) I would think you would be getting neoadjuvant therapy for 6 weeks, than break, than surgery, than break, than clean up chemo right?

Hey everyone,

Currently recovering from my robotic ular last monday, boy that was tough! While I don't have any reports yet, my surgeons kept saying "it was a great success, we got it all out." One even said "they cut underneath the base of the tumor stem cell", which i assume means clear margins.
They were overtly happy, i was on another planet with the morphine ha. Fingers crossed for the report.

Dealing with the pain and temp ostomy at moment but I'm moving more everyday and have great support. I'm really happy I waited for the robot I could only imagine the pain of open surgery.

sealdog wrote:Hey everyone,

Currently recovering from my robotic ular last monday, boy that was tough! While I don't have any reports yet, my surgeons kept saying "it was a great success, we got it all out." One even said "they cut underneath the base of the tumor stem cell", which i assume means clear margins.
They were overtly happy, i was on another planet with the morphine ha. Fingers crossed for the report.

Dealing with the pain and temp ostomy at moment but I'm moving more everyday and have great support. I'm really happy I waited for the robot I could only imagine the pain of open surgery.

Glad you’re doing well and I hope you have a rapid recovery.

Definitely makes you feel better when your team is happy too.

I had open surgery and didn’t have much pain but the physical restrictions have been a nuisance. Also, you will get better at the Ostomy stuff though I think that the overall process of product and usage discovery is quite challenging.

I asked why my surgeon chose open surgery and she told me that it was due to a small pelvis and she did tell me beforehand.

sealdog wrote:Hey everyone,

Currently recovering from my robotic ular last monday, boy that was tough! While I don't have any reports yet, my surgeons kept saying "it was a great success, we got it all out." One even said "they cut underneath the base of the tumor stem cell", which i assume means clear margins.
They were overtly happy, i was on another planet with the morphine ha. Fingers crossed for the report.

Dealing with the pain and temp ostomy at moment but I'm moving more everyday and have great support. I'm really happy I waited for the robot I could only imagine the pain of open surgery.

Glad to hear you are doing well. You will get used to your temporary ileostomy. Getting a pouching system that works for you is key. Make sure you work with an ostomy nurse to find the best products for you. I've had mine for 6 months and I have times when I almost forget I have it.

Just a quick one, got my pathology results today. I had a complete pathological response to neoadjuvant therapy.
No cancer traceable in the 15 lymph nodes and tissue removed. They believe its reasonable to think I was closer to stage 2 than 3. Chemo may not be necessary and reversal of stoma soon.

Today was a good day. It's been so long without hearing good news. I wish you all the same feeling.

Such good news! I am really happy for you!

Claudia