Mikenh and Surgery

Fell down the stairs rushing to the bathroom to empty the bag. Only one empty this morning so it was full. I turned off my alarms to reset my watch but maybe I need to turn them in again. I need to clean and dress a three inch cut On my forearm. I don’t think that there’s any other damage. The reason for the fall was losing balance and skipping because I was using both hands to support the bag.cleaning this is going to sting.

I woke up my daughter for help. She dabbed down the area with alcohol and I cut a large sterile pad in half and overlayed it and she used the Hypafix tape to dress the wound. I considered using Cavilon Spray on it first or maybe a barrier wipe but I'm not familiar enough with the stuff to know if they can be used for those purposes. So I have tape covering almost the length of my forearm (she overdid it on the tape). The Hypafix feels like cloth on the outside, and it's very flexible so I haven't lost range of motion. It's also very thin so it should be unobtrusive. I will need to keep an eye on it for infection and I guess I'll monitor pain levels for warning signs. It's fortunate that I had the tape as I don't really have anything else in the house outside of duct tape that would handle something this large.

I think that the oncologist was freaked out with me falling down the stairs. He wanted to see the wound and called in a nurse to check for infection. I really didn't want to take the dressing off and then have them redress it so I showed them the pictures. Always take pictures of wounds as you can email them to your doctor's office and you can see the progress or additional problems. The nurse was fine with the pictures. We dropped the Xeloda from 4,000 mg/day to 3,500 and the Oxaliplatin to 75% from 80%. I still felt the effects, similar to last time but it was in the 60s outside and my car was under the sun in the parking lot and it was nice and warm in the car. I turned on the heat anyways though and I had my gloves and balaclava on. The throat closure issue was stronger this time so I picked up a giant cup of Dunkin hot and am sipping it at my desk now. I had difficulty talking before drinking it. Eye's feel sticky too and fingers feel more neuro after the Oxaliplatin.

I also took the prescription from Zofran and have to pick it up this afternoon. Back to work (forgot my power cord).

I’ve had fluctuations and they worried me. I get tested at least twice a month.

My CEA was 10.+ when my recurrence was determined after bleeding and biopsy.

After Xeloda & Avastin:

4.7 - moving down to 3.2 (steady) then it shot up to 3.7 after six months. It went back down to 3.0. My Oncologist was not concerned.

My PET/CT showed minor shrinking and no spread. We’ve decided not to worry about it until it’s heading to a ten.

I know it’s a big worry, but not something to focus on.

I would try to relax during Chemo try and clear your head.

If something goes wrong, you should have plenty of time to handle things, worrying won’t help.

Good Luck

Tunadog said:

I’ve had fluctuations..

I’ve had fluctuations and they worried me. I get tested at least twice a month.

My CEA was 10.+ when my recurrence was determined after bleeding and biopsy.

After Xeloda & Avastin:

4.7 - moving down to 3.2 (steady) then it shot up to 3.7 after six months. It went back down to 3.0. My Oncologist was not concerned.

My PET/CT showed minor shrinking and no spread. We’ve decided not to worry about it until it’s heading to a ten.

I know it’s a big worry, but not something to focus on.

I would try to relax during Chemo try and clear your head.

If something goes wrong, you should have plenty of time to handle things, worrying won’t help.

Good Luck

I just looked at a graph and it’s rising by 0.4 per cycle. It must be the Xeloda because i had a 1 week chemo break and the CEA was unchanged for that week. So maybe that is a rational hypothesis.

I had a meeting with the surgeon and she thought that four cycles were enough but I indicated that the oncologists thought more would be better so she's going to chat with the DFCI oncologist. If four is enough, then we set a surgery date of four weeks after end of chemo and it's a 2-3 nights hospital stay for the reversal (I thought it would be outpatient). It would be nice but I've learned not to get my hopes up. One thing that really helps is that the temps will be in the 50s next cycle if there is one. I am contemplating a one-week delay for the next cycle too. I need more time when I'm whole to recover from the chemo. I sometimes wonder if there are studies where you have two weeks on, two weeks off instead of two weeks on, one week off. I understand that the whole process moves faster with the former but I wonder if overal quality of life is better with the latter.

We discussed a male issue and she checked out my abs and the scars/wounds and stoma.

My GI doc sent me a letter saying that he's got a new job as CMO of a local, regional hospital which is a huge step up for him. I will be sorry to see him leaving GI work as he helped me to get through the early stuff. I will need to find a new GI doctor - it was only luck that I got the best GI doctor in the state (he was actually voted best doctor in the state by his peers). I might go with MGH or Brigham and Women's. Getting to those places would be a pain but it would likely ensure a top doctor.

Mikenh said:

I've been gettng about 1K

I've been gettng about 1K calories a day and got in 2K today. I'd guess that I've lost about 7 pounds in the past week. I've decided that I can't take the chemo without a longer break so that the neuropathy level drops. I might change my mind on my week off but I don't think that the neuropathy level will drop much with a week. I'm thinking two or three weeks off chemo right now. Of course Jim's possible situation has me worried too - am I doing enough chemo?

What is Jim's possible situation? Following closely, as I know I have to do the mop up chemo, but it is hard not to consider stopping so can resume life.

I feel better after more food. There's less neuropathy and less cold sensitivity. The chemo makes me want to eat and drink less and both of those cause problems. I still feel that I need a break though. I have another 5 days of Xeloda and they're going to make things worse before they get better.

Met with the backup oncologist yesterday and we decided to skip the Oxaliplatin this round and reassess for Cycle #6. I started running again on Monday, 1 mile, then 1.3 on Tuesday, 2.05 yesterday and 2.4 this morning. I might run some more this afternoon or do weights or both. It's nice to do a round without the cold sensitivity and nausea. I expected to hear back from the surgeon (she thought I didn't need anymore chemo and was going to check with the Dana Farber Oncologist but I didn't hear back. I was skeptical that any oncologist would recommend stopping at 4 cycles - yes I was PCR but the lymph nodes were indeterminate because they could have been zapped by the radiation.

Mikenh said:

Met with the backup

Met with the backup oncologist yesterday and we decided to skip the Oxaliplatin this round and reassess for Cycle #6. I started running again on Monday, 1 mile, then 1.3 on Tuesday, 2.05 yesterday and 2.4 this morning. I might run some more this afternoon or do weights or both. It's nice to do a round without the cold sensitivity and nausea. I expected to hear back from the surgeon (she thought I didn't need anymore chemo and was going to check with the Dana Farber Oncologist but I didn't hear back. I was skeptical that any oncologist would recommend stopping at 4 cycles - yes I was PCR but the lymph nodes were indeterminate because they could have been zapped by the radiation.

Mike - Great you are able to get some running in.  It helped me on my non-chemo days.

FYI I got through 6 full cycles of Oxaliplatin, 7th reduced to 80%, skipped 8 and 9, 10th reduced to 80%, skipped 11 and 12.  

I still have some neuropathy in my fingers more in my toes. Balance still a bit off.  Doesn't affect my running though. 

Good luck assessing cycles and amount with your oncologist.

Cindy 

abita said:

What did your oncologist say

What did your oncologist say about missing some? With regards to killing off any hidden cells? I had 5 rounds. Reaction on the 6th that had me in emergency for 9 hours. A second try at 6th that was stopped at 25 minutes. I am now allergic to it. I will be getting a replacement drug. I know that the icu was working because it shrunk my tumors. I am happy to be off the icu, just worried about my chances at preventing recurrence.

She said that the Xeloda/5FU did the bulk of the work in preventing recurrence. I think that the Oxaliplatin increases prevention by two or three percent so potentially a lot of side-effects for a relatively small benefit. But that benefit may be important to some. I had a Pathological Complete Response with surgery and that may be a factor as well.