The Colon Club

I had to stop the Oxaliplatin after the 3rd round. My doctor suggested 3 out of 8 was better than none (obviously), but that the addition of Ox is only recent to the protocol and improved outcomes by 3-4% overall. so in my case, he was concerned more over the long term side effects of continuing Ox rather than stopping it altogether.

In the Scot trials, it was shown than recieving half of the protocol or in my case 4 out of the standard 8 cycles had little to no effect on the outcomes or the numbers in the study were realtively the same.

i am on round 7 now of just the xeloda at 4000mg per day. one more to go! I think the chemo has killed me to the core as the side effects are more prominent and lasting. i have some hair thinning/loss, peeling skin above my finger nails, red hot sunburn feeling feet, cracks in the skin around my toes, the palms of my hands look red and waxy, finger tips - especially the pads of my thumbs are numb, my digestive tract is out of whack, nightmares and insomnia...that’s about it. all manageable given the alternative.

Atoq wrote:You are really close to the end of the mop up chemo! I hope the next rounds are not so hard and you will be NED for ever!

If the oncologist says 6 is like 12, are you not tempted to stop now that you are over 6?

All the best

Claudia

Since there were 12/17 LNs involved- the oxi was lowered but not completely eliminated. It will eventually be eliminated because she said it was rare to go all 12. Anyway the closer to spring I come, the closer to the end I am. I just really want clear scans and this port out. My best advice to anyone going through this is to make plans. Plans to vacation, dinner, whatever. Plans help. A great distraction. One more step to new normal.

Just wanted to post an update. I AM FINISHED WITH CHEMO! I could scream it all over the place. I know this can come back and this may be the first of many but I feel free. I am tired and beaten up but I am still here. Breathing. I’m determined to enjoy this for even a bit of time. Colonoscopy on May 30 and then a scan in July. Then port removal if all goes well. Thank you all for helping get through this part. Your support was so important.

So glad you are done. Everyday you will feel better. It takes time.

teacher2017 wrote:Just wanted to post an update. I AM FINISHED WITH CHEMO! I could scream it all over the place. I know this can come back and this may be the first of many but I feel free. I am tired and beaten up but I am still here. Breathing. I’m determined to enjoy this for even a bit of time. Colonoscopy on May 30 and then a scan in July. Then port removal if all goes well. Thank you all for helping get through this part. Your support was so important.

Yay!!!! Its time to party!!!!

Beckster wrote:

teacher2017 wrote:Just wanted to post an update. I AM FINISHED WITH CHEMO! I could scream it all over the place. I know this can come back and this may be the first of many but I feel free. I am tired and beaten up but I am still here. Breathing. I’m determined to enjoy this for even a bit of time. Colonoscopy on May 30 and then a scan in July. Then port removal if all goes well. Thank you all for helping get through this part. Your support was so important.

We all share your joy! You can focus on enjoying spring.
Margie

Congrats teacher2017! I've been wondering how you've been. Great work finishing up those 12 rounds! Good luck with that follow up scope....my husband goes for his in May as well....summer's almost here!!

So happy for you. Can't wait to be on your side of treatment.

Awesome news! So happy that everything is going well and you can enjoy your summer!

Congratulations! I'll admit, when I started reading this thread I didn't realize how old it was until I got to the bottom and saw it had 27 pages! Reading your entry reminded me a lot of when my husband was diagnosed, except he did get his surgery done withint 48 hours because the tumor had blocked his colon completely and he was very ill. Hearing that cancer dianosis made me feel like our life as we knew it was over, that I had to face a reality without my best friend in the near future. Reading entries like yours and others that have gone through this gauntlet before us and have come out the other side have helped immensely. So I wish you the best of luck and a long future ahead of you as NED!

I have to say that not a day goes by that I don’t worry about the future. But I feel like I just beat a giant. Could I be crazy and actually have it returning? Sure but today I feel normal and did normal mom-like things. I have a colonoscopy in May and a scan in July. I don’t know where my pathology report is and I don’t want to find it. I feel fine with neuropathy in fingers and toes but I’m alive. I’ll take it. I pray for all of you and hope that we will come back 30 years from now and chat. If others can survive, why can’t we? I’m convinced that I’ll die from stress and not cc. Or I’ll have survived all this and get killed by a bus. I now know why we don’t see a lot of survivors on these boards, we all just want to move on. Keep us posted of all your successes. We need them.

Amen to all of that!

Glad to know that you are doing so well and continue to stay NED!

Shana

Feeling relieved! Colonoscopy was clear. Thanks to my tumor they couldn’t see the rest of my colon during the first one. All clear! GI dr said the surgeon did a nice neat resection and he said I didn’t need another colonoscopy for 3-5 years. How can it be? I refuse to wait that long. Too nervous! Blood work with cea level in Friday then a scan to be scheduled. I’d be in a much better place if it weren’t for those damn LNs involved! Thought I’d share my good news! Hoping this feeling stays awhile. It’s been a terrible ride and I want to get off.

Hi,
So glad you are coming out the other side of it all.
Really do have a wonderful time ahead..........

teacher2017 wrote: It’s been a terrible ride and I want to get off.

Isn’t that the truth?! Definitely enjoy the good news, it was hard earned! I feel your concern with the lymph nodes, but many on here have had LN involvement and are NED many years out, so why can’t we be as well, right?!

From one teacher to another—good luck finishing up your school year and thoroughly enjoy your summer break, I know I will be!