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Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Posted: Tue Feb 20, 2018 3:24 pm
by Caat55
heiders33 wrote:My blood pressure was pretty low in the weeks following LAR surgery. I was told to eat and drink salt and electrolytes. I’ve gotten my blood pressure back up to normal.

How are your hands?i see oncologist tomorrow to talk about mop up chemo. I am really concerned about sensory and functional changes to my hands .

Sussan

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Posted: Tue Feb 20, 2018 4:23 pm
by heiders33
My hands are fine. Sometimes I lose my grip and drop things, but I often wonder if I’ve always done that and just never noticed it until now. I don’t have any numbness or tingling. My feet are still recovering - they get red and angry and blistery and occasionally tingly if I stress them too much. I live in NYC so I walk a lot. I’ve been wearing thick socks which helps, but now the weather is getting warm this week so we’ll see. I got an oncology massage last night which focused on my hands and feet. It was so nice.

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Posted: Fri Feb 23, 2018 6:23 am
by NHMike
heiders33 wrote:My hands are fine. Sometimes I lose my grip and drop things, but I often wonder if I’ve always done that and just never noticed it until now. I don’t have any numbness or tingling. My feet are still recovering - they get red and angry and blistery and occasionally tingly if I stress them too much. I live in NYC so I walk a lot. I’ve been wearing thick socks which helps, but now the weather is getting warm this week so we’ll see. I got an oncology massage last night which focused on my hands and feet. It was so nice.


It's been so nice and then we got snow yesterday and some of the cold sensitivity came back (on my nose). The Xeloda is definitely affecting my hands (arthritic feeling) as it doesn't fade like the other Oxaliplatin stuff. I'll talk to the Oncologist about that.

Change the bag yesterday morning - 7.5 days on it and it was starting to sting. The bag change took 14 minutes which is quick for me. I'm still loving the Convex bags. I don't mean to wait so long between bag changes but life has been busy (work especially). The snow should melt quickly as I think that it's 40s today and 50s tomorrow. I'm getting more sleep at night and doing more of the big-four barbell exercises daily (deadlifts, squats, military press, bench press). Also trying to stretch more but it's tough to fit it all in.

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Posted: Sun Feb 25, 2018 8:29 pm
by NHMike
I've been getting in a bit more exercise, both in the form of formal workouts and in doing more physical chores. It will end, of course, on infusion day this week. I'm considering asking for a drop to 75% from 80%. I am having regular arthritic feeling in my hands when I wake up and much less during the day. The latter is due to the Xeloda as it stayed consistent and didn't fade. So I'm keeping on and getting used to the cycles and dreading the infusion days.

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Posted: Mon Feb 26, 2018 8:05 am
by Atoq
How many rounds do you still have to do? How big is the Xeloda dose compared to the one you took during radiotherapy?

Claudia

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Posted: Mon Feb 26, 2018 11:14 am
by NHMike
Atoq wrote:How many rounds do you still have to do? How big is the Xeloda dose compared to the one you took during radiotherapy?

Claudia


Another five rounds to go.

The Xeloda for Adjuvant is 4,000 units (mg I assume). The Neo-Adjuvant was 3,500. I also had weekends off on Neo-Adjuvant. That additional 500 mg makes a difference.

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Posted: Mon Feb 26, 2018 11:35 am
by heiders33
Mike, you and I had similar staging, I think, and I did six rounds of Xelox and it looks like you are doing eight. Have you talked to your onc about reducing it to six? My onc kept it at six because he wanted to maximize impact while minimizing side effects. I know eight is listed as the standard, but it seems like the standards are changing. Of course your onc knows things I don’t know, but just a suggestion.

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Posted: Mon Feb 26, 2018 11:48 am
by NHMike
heiders33 wrote:Mike, you and I had similar staging, I think, and I did six rounds of Xelox and it looks like you are doing eight. Have you talked to your onc about reducing it to six? My onc kept it at six because he wanted to maximize impact while minimizing side effects. I know eight is listed as the standard, but it seems like the standards are changing. Of course your onc knows things I don’t know, but just a suggestion.


My second opinion at Dana Farber said "Minimum four, Maximum eight, Sweet Spot six". I haven't worried about it but I'll crank up the research after #4. Yes, I'm aware of the research but it's so much effort just getting close to those numbers.

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Posted: Mon Feb 26, 2018 2:08 pm
by ocstacy
Took my nap and it is still awful. This is going to be tough until it starts to subside. Going back to sleep some more with gloves.


Been thinking about you. How is everything? My mom and you were doing everything at the same time. My mom had tough recovery. She is now just on Xeloda, you? Hope all is okay. There are a lot of ups and downs with this process. My mom's last day of chemo is May 3, than reversal is set for a month or two after that. Have a great day!


Stacy

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Posted: Mon Feb 26, 2018 2:36 pm
by susie0915
My oncologist told me a total of 8 rounds but included the chemo I had during preadjuvant therapy as one round. So she scheduled me for 7 more after surgery. I ended up doing 6 which she was fine with because my son was getting married out of town and I wanted a month to recover if possible. Depending how you do during the next rounds I'm sure your oncologist with re-evaluate what is necessary.

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Posted: Mon Feb 26, 2018 5:50 pm
by Caat55
The Xeloda for Adjuvant is 4,000 units (mg I assume). The Neo-Adjuvant was 3,500. I also had weekends off on Neo-Adjuvant. That additional 500 mg makes a difference.[/quote]

Mike,
What do you mean the additional 500 mg makes a difference? In what way?
I have decided to go with the oral Xeloda, after hearing the process with the 5 FU. Longer time at infusion center, more frequent visits, idea of being hooked up to a bottle of chemo for two additional days.

Susan

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Posted: Tue Feb 27, 2018 11:46 am
by Atoq
I think he means that even if it is only 12.5% more than the neoadjuvant dose, the side effects are much stronger.

Claudia

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Posted: Tue Feb 27, 2018 5:25 pm
by NHMike
ocstacy wrote:
Took my nap and it is still awful. This is going to be tough until it starts to subside. Going back to sleep some more with gloves.


Been thinking about you. How is everything? My mom and you were doing everything at the same time. My mom had tough recovery. She is now just on Xeloda, you? Hope all is okay. There are a lot of ups and downs with this process. My mom's last day of chemo is May 3, than reversal is set for a month or two after that. Have a great day!

Stacy


Really busy with work and taking care of chores before the infusion tomorrow. I like to get a lot of odds and ends done on my off week as I'm a wreck the other two.

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Posted: Tue Feb 27, 2018 5:28 pm
by NHMike
Caat55 wrote:The Xeloda for Adjuvant is 4,000 units (mg I assume). The Neo-Adjuvant was 3,500. I also had weekends off on Neo-Adjuvant. That additional 500 mg makes a difference.


Mike,
What do you mean the additional 500 mg makes a difference? In what way?
I have decided to go with the oral Xeloda, after hearing the process with the 5 FU. Longer time at infusion center, more frequent visits, idea of being hooked up to a bottle of chemo for two additional days.

Susan[/quote]

There's a video of me playing tennis on YouTube on the next to last day of Xeloda and Radiation. You wouldn't think that I was on chemo or radiation in watching the video. I have arthritic feelings in my hands right now that I think are from the Xeloda and I'm guessing that it's the hands and feet syndrome that people talk about. I know what osteoarthritis feels like because I've had it in my knees in the past. Fortunately, shoe technology has improved so that it's much less of a problem now. So I will talk about dropping the dose on the Xeloda with the oncologist tomorrow. I only have 500 MG pills but we could go with 4 in the morning and 3 in the evening for 3,500.

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Posted: Tue Feb 27, 2018 7:48 pm
by NHMike
Got a lot done today in preparation for the infusion tomorrow. I also changed the bag in a record 7 minutes. Recommendation: do your bag changes the day before the infusion as you'll feel less like doing it in the couple of days afterwards. I can't believe how much work there is to do - fortunately there isn't any schedule pressure in the near future but I sometimes put pressure on myself to get things done.