The Colon Club

susie0915 wrote:I had my surgery 9/9 was suppose to start chemotherapy the 3rd week of October. Since I had my blockage October 7 and was in the hospital for 3 1/2 weeks and had surgery I wasn't able to start chemo until December 7. I don't know if that's too long after surgery, no one ever said anything to be about having to start by a certain time period after my resection. I'm sure the doctor will be sure you begin when necessary.

Four weeks seemed to be "the thing" as I've seen so many people on that schedule but I'm sure that it's not written in stone. Stuff (floods, hurricanes, power outages, snowstorms) happen.

I have an appointment with the oncologist on November 30. They don't have a waitlist function in their software but they said that I could call next week to check for appointments that open up. The only minor headache would be getting the Xeloda pills from the mail-order pharmacy that my insurance company uses. That is if the adjuvant chemo is only Xeloda. If it's Oxy or something else, then I'll have to use the local hospital or the relatively local DFCI in New Hampshire.

Changed the bag in 15 minutes so I'm getting a lot more efficient at it. I think that I should be able to get it down to ten minutes but it will take more practice. I made several changes to my directions - basically fine-tuning things. So things are getting easier.

Good. It does get easier. All repetition and making minor changes to fit your schedule and needs. Glad to hear things are going pretty well.

Hi Mike, I just wanted to thank you so much for taking the time you do to post the details of your cancer journey! My symptoms were very similar to yours and our treatments are nearly the same. My only difference is having had 4 rounds of folfox before my chemo/rad to hopefully reduce a "rogue lymph node" in my pelvic area that was outside of the tumour region. I don't have measurements, but my oncologists said they were very pleased as I had a "significant" reduction in the lymph nodes and tumour! I just finished radiation a week ago and following along with your past updates really helped! I'm very happy for you that your treatments and surgery have gone so well! I met with my surgeon on December 4th. Take good care and now that I finally got my act together and recovered my password...I can actually post on here again.

ValZen wrote:Hi Mike, I just wanted to thank you so much for taking the time you do to post the details of your cancer journey! My symptoms were very similar to yours and our treatments are nearly the same. My only difference is having had 4 rounds of folfox before my chemo/rad to hopefully reduce a "rogue lymph node" in my pelvic area that was outside of the tumour region. I don't have measurements, but my oncologists said they were very pleased as I had a "significant" reduction in the lymph nodes and tumour! I just finished radiation a week ago and following along with your past updates really helped! I'm very happy for you that your treatments and surgery have gone so well! I met with my surgeon on December 4th. Take good care and now that I finally got my act together and recovered my password...I can actually post on here again.

Glad to hear that you're doing well on this long road. I've had username/password issues here as well but I think that things are okay now. I just wish that I got email notifications.

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Just back from the gym. Walked 1.10 miles with top speed of 3 MPH (a 10% speed improvement over yesterday) and very happy that I can make a little progress on pace. Then I hit the weight machines:

- Seated Abdominal Crunches, Leg Extensions, Seated Leg Curls, Chest Press, Fly, Delts, Hip Adduction, Rows, Triceps Press, CUrls

I normally wouldn't use a lot of these machines in the past as I could do them with dumbbells, barbells or a bodyweight fixed system (pullups, dips and roman chairs). But the machines make it easy to do strength workouts without having to lift heavy plates while limiting range of motion. It did feel good. I should do these every day. Bear in mind that the amounts of weight are a lot lower than what I usually do as I haven't found my limits. I am likely not close to any limits with these tests.

In your gym, do they have any machines that exercise the levator ani muscles or the pubis recti muscles? Given the type of surgery you had, you may need to do some pelvic floor rehabilitation exercises in preparation for your eventual ileostomy reversal.

http://coloncancersupport.colonclub.com/search.php?keywords=levator+&terms=all&author=missmolly&sc=1&sf=all&sr=posts&sk=t&sd=d&st=0&ch=300&t=0&submit=Search

O Stoma Mia wrote:In your gym, do they have any machines that exercise the levator ani muscles or the pubis recti muscles? Given the type of surgery you had, you may need to do some pelvic floor rehabilitation exercises in preparation for your eventual ileostomy reversal.

http://coloncancersupport.colonclub.com/search.php?keywords=levator+&terms=all&author=missmolly&sc=1&sf=all&sr=posts&sk=t&sd=d&st=0&ch=300&t=0&submit=Search

I am unaware of machines that work the lower pelvic area specifically. Before surgery, I did do pelvic exercises about once a week. I am only aware of one other pelvic exercise - a lady at the gym takes a barbell, loads it up with weights and makes a bridge with her feet and upper body on a few stacked steps or on a bench. And then lifts the barbell (and weight plates) with her hips. I do various forms of squats and I would guess that they do hit the pelvic area a little bit. I also do adductors and abductors and they may hit the pelvic region a little bit.

The recommendation to do Pilates is a little vague as it encompasses a wide variety of exercises and I doubt that I could do many of them after surgery. Isolation work is what I really need right now - stuff that can be done with very low resistance levels. I have not done pelvic exercises since surgery for fear of injury and it might take me a while to get over that fear. My horizontal cut is about four inches below the belly button so the lower abs are affected. I actually think that I can work the upper abs without problems but it will take a while to verify that hypothesis - a little at a time.

Edit: I had a look at a Pilates workout for post abdominal surgery and what I saw is similar to what I have done though the video exercises are a lot easier (they should be following surgery). Modern workouts take a little from a lot of areas so you may get a mix of pilates, yoga, bodyweight exercises, TRX, etc.

I went to the CVS this morning to return the blood thinners. The prescription was for 24 shots and they gave me 60 of them. They originally said that they couldn't take them back but I told them that there was an error or something so they looked it up and it turned out to be their error. So they took the three boxes that I brought back and I'll have to bring back the fourth box so that they can take six out of it (I didn't open the boxes). They will fix the stuff with my insurer and save them $1,200. I probably should have done this earlier but I left the big bag unopened for quite some time. They gave me some and didn't have enough so I had to go back and they just gave me a bag with the boxes and I didn't know how many there were in there.

So check your prescriptions that it is A) the right stuff, B) the right quantity. These cancer-related drugs can cost a small fortune.

One-hour workout tonight. Walked one mile, top speed of 3.3 MPH and spent the rest on the isolation weight machines. I did a few exercises where I had to push a little instead of doing really low-resistance stuff.

I had a chat with the fitness center manager at the office and she said that I was using those machines as part of their design - isolation. In general, there are much better ways to do regular strength training. I'm hoping to get in five miles a day in walking but that will depend on how busy I am and the availability of the gym.

Placeholder link for detailed description of going on Adjuvant Chemo in case I need it in a few weeks.

https://csn.cancer.org/node/313089

I did some glute bridges this morning on the bed. No problems. I've been quite afraid to do lower pelvic exercises and am just starting to wade into these.

It’s good to see that your recovery is moving very well, Mike.

That is good link to the other forum,on what about to expect from folfox.
They gave me zofran and dexamethasone pills before infusion, so I never experienced nausea, my apetite was more than good, managed to put on about 6 kg, mostlly from being inactive and eating a lot’s of carbs.

On the day of chemo, in the evening I had leg cramps, took magnesium pill, that helped, magnesium also could cause diareha.
Also watch your potasium as chemo will take it down, so you might experience fast heart rate on any activity.

I suppose your chemo is coming up soon?

mozart13 wrote:It’s good to see that your recovery is moving very well, Mike.

That is good link to the other forum,on what about to expect from folfox.
They gave me zofran and dexamethasone pills before infusion, so I never experienced nausea, my apetite was more than good, managed to put on about 6 kg, mostlly from being inactive and eating a lot’s of carbs.

On the day of chemo, in the evening I had leg cramps, took magnesium pill, that helped, magnesium also could cause diareha.
Also watch your potasium as chemo will take it down, so you might experience fast heart rate on any activity.

I suppose your chemo is coming up soon?

I think that my electrolytes were lower on Neo-Adjuvant.

I have a meeting with the DFCI Oncologist on Thursday, November 30 and I'd like to get started shortly thereafter. I'm not sure where I'm going to have it done. If it's only pills, then I could do it at DFCI or locally. If a short infusion is required, then local would be easier though I could schlep into Boston or Londonderry (DFCI has a facility 30 minutes away in NH). If a long infusion is required, then local would be a lot better.

My total infusion time was about 3 hours. First they give you anti nausea meds, then the oxi. The pharmacy there would fill any meds I needed as well. There was a couple times I went in for hydration as well.

My Ileostomy supplies arrived and they're the right ones this time. So I'm good for at least a month. If I maintain five days per wafer/bag, I'm good for 125 days with these and my hospital supplies. I'll order another batch in December though in case the reversal doesn't go according to plan (supposed to be end of January 2018).

My oxaliplatin infusion is 3 hours, as well. I was supposed to be finished last week, but my platelets were too low. I tried again this past Monday and my platelets were even lower. I go in this coming Monday to try again.