Knocking on wood daily!

[Shana]

Hello everyone,

This is my first post after just joining this site. I've learned so much already from members who openly and graciously share their knowledge and experience with all of us.

I spent the first 6 months of this year in and out of the hospital due to severe toxic reaction to 5 FU and also oral Xeloda. July will be the first month of 2017 without hospitalization (knocks on wood) It has been a roller coaster year so far and I am hoping to finally get a break with new treatment of Irinotecan added to current Cetuximab infusion. I had my first Irinotecan infusion last Monday and so far feeling good. The premed steriods had me bouncing off the walls for nearly 3 days! I got a lot of house cleaning done

My tumor is in the descending colon at the splenic juncture close to the pancreas. I consulted with a surgeon at UCSF 12/16, she did not want to remove and resect unless chemo could significantly reduce the size of the tumor. Long story short, I eventually ended up with a blockage on June 2nd (yes it was my birthday) and was told to get my affairs in order by the general surgeon at local hospital. My daughter's wedding was in 16 days and I wanted to be there. My oncologist made some calls and sent me to UC San Francisco where they saved my life with a colostomy on June 5th and I was home a week later and made it to the wedding.

Cancer has opened my eyes to what is truly important to me. I have met some amazing and caring nurses, brilliant doctors and so many kind people that it has reaffirmed my belief that there is more good in the world than the news portrays. I hope to share my ups and downs here as well as any information that might help someone else. I am still awaiting genetic test results from the UCSF 500 which was recommended by my oncologist. I will share those results when I receive them.

Thank you for reading and I look forward to any feedback or comments!

Shana

[Lee]

Hi Shana

Hi and welcome, sorry for the reason you are here. So glad you were able to make it to your daughter's wedding.

I believe you have already learned something about Dr.(s), and that thy are not all are equal. Some are better than others. I so glad you did not have to listen to the one who said put your affairs into order. Glad you were able to prove s/he wrong

When it come time for your surgery, make sure a board certified colon rectal surgeon does your surgery. They are better trained than a general surgeon.

Hope your current cocktail can shrink your tumor for surgery,

Again welcome,

Lee

[tater]

Welcome to the forum. I have only been signed up for a couple of weeks but have learned a lot in that short amount of time. I am a caregiver to my wife who is going through this battle. Keep up the fight.

[NHMike]

Welcome and I always appreciate the experiences of others. I'm glad that you got the quality of care so that you're still around and were able to attend the wedding.

[Shana]

Hi Shana

Hi and welcome, sorry for the reason you are here. So glad you were able to make it to your daughter's wedding.

I believe you have already learned something about Dr.(s), and that thy are not all are equal. Some are better than others. I so glad you did not have to listen to the one who said put your affairs into order. Glad you were able to prove s/he wrong

When it come time for your surgery, make sure a board certified colon rectal surgeon does your surgery. They are better trained than a general surgeon.

Hope your current cocktail can shrink your tumor for surgery,

Again welcome,

Lee

Hi Lee,

Thank you for the warm welcome. I feel like this is going to be a great resource of information and comfort for the tough times. I hope to be active here for a very long time, this is just the beginning of the journey. The surgeon who did my colostomy at UCSF is a specialist in CRC surgery so I was very lucky to have her perform the surgery. I'm hoping that my new cocktail will allow me to get resected when it is considered safe.

I'm still angry with the general surgeon who didn't even tell me to seek another opinion, just wrote me off... thankfully my oncologist worked diligently to get me to the right surgeon!

All the best to you,

Shana

[Shana]

Welcome to the forum. I have only been signed up for a couple of weeks but have learned a lot in that short amount of time. I am a caregiver to my wife who is going through this battle. Keep up the fight.

Thank you Tater,

I hope your wife is doing well with her new treatment. Folfox is very effective for many people, I have no idea why my body wasn't able to tolerate it but so far so good on Irinotecan and Cetuximab. Best of luck to both of you and yes... keep fighting!

Shana

[Shana]

Welcome and I always appreciate the experiences of others. I'm glad that you got the quality of care so that you're still around and were able to attend the wedding.

Hi Mike,

Thank you for the welcome. I think sharing our experiences good and bad will help us all fight this battle. I have learned to stop thinking about hindsight and what if I had just..... That's water under the bridge. My goal was to just make it to the wedding, now I'm thinking I'd like to stick around for grandkids eventually and two more weddings for the kids who are still single

I hope your treatments are sucessful and tolerable!

Shana