Mikenh and Surgery

I gained weight. I think it is the steroid making me starving plus trying to get in that 90 grams of protein. But my levels went down each time. Now that I have had surgery, my levels are just normal.

Mikenh said:

I put on the Stealth Belt and

I put on the Stealth Belt and am wearing it right now. It's a clever design though it looks designed for wearing your bag sideways. My bag is currently sideways in the Stealth Belt and I'm going to take it out for a short run. It definitely solves the problem of the bag peeking out from under your shirt but I don't think that I'd like to wear this with a lot of stuff in the bag.

Short run was good except for shoelace and Bluetooth issues. I have trouble reaching down to tie my laces with the bag and have to do some contortions to get there. My old phone works better with the back of the phone facing outwards - I guess that the Bluetooth antenna is on the back of the phone. Outside of that the belt works really well. It's definitely pricey for what must be minimal manufacturing costs but you really pay for the R&D and customer support.

Hi Mike - I used a stealth belt for running when I still had the ileostomy and it worked great.  I agree it is pricey but worth the investment if you're going to use it. Not sure if this will apply to you later on but once the ileostomy was reversed and the wound was healing I had to cover it up with several gauze pads as my running clothes irritated it.  My wound is right on my belt line so even now that it's healed I'm constantly adjusting for comfort...

Cindy

I spent the last week cleaning and must have thrown out 1,000 pounds of stuff. It was tiring and resulted in a few sore spots but the house feels 50% bigger. I was going to run a few miles today but I forgot my side-straps and decided to do bodyweight and Yoga balance poses instead. I also got in a weight machines workout at the Y. I was surprised that I couldn't do what I did the previous time but I haven't used the weight machines in probably a month so I guess that's reasonable. I also tried out a Tai Chi YouTube workout. Most of the poses are surprisingly tough - I held them for fifteen seconds. The Tai Chi stuff was easier in what you do but it was hard figuring out what to do as the movements are complicated. I need to ask my wife if she's done them before. I know that my mother-in-law did them daily.

The neuropathy is fading quickly but the arthritic feeling is getting stronger. So the former is from the Oxaliplatin and the latter is from the Xeloda. It can sometimes be hard to tell the difference but the neuropathy is tingly while the arthritic feeling is basically joint pain or irritation. It's worst when I wake up and quite noticeable at night. It's weakest is during the day when I'm doing things with my fingers.

Mikenh said:

I have a huge pile of stuff

I have a huge pile of stuff at work and there's a lot of schedule pressure so I'm not reading and posting as much and I have a lot of threads to catch up on. I need to get my taxes done too.

Hands and Feet peaked five days after the last Xeloda pill of the cycle and it's moderate but declining but next cycle is tomorrow morning. I'm going to ask the oncologist about dropping the Xeloda from 3,500 mg/day to 3,000. We had dropped it from 4,000 mg/day to 3,500 after cycle 3.

I fell on the stairs yesterday morning as well though there was no damage. I'm getting better at falling. This morning is used the flashlight on my phone for lighting.

I ordered LED strip lighting from Amazon this morning and plan to install it along the stairs. This means that the stairs will always be illuminated. If it works well, then I'll install one of these on the basement stairs as well. It's a good safety precaution chemo or not.

I have not fallen, but I have to say, the fear started while recovering from surgery. I now keep a light on in the living room when I sleep. I started working from home. Some days are much harder than others, but I feel better doing something.

Waiting for my infusion at 55% this morning. We discussed TNT and 3 months = 6 months - my oncologist was up on this stuff.

He said that he'd like to do 1 or 2 more Oxaliplatin (out of 3 cycles) but I think that he would have been fine with 0. I will do this one and maybe one for the eighth cycle. The temps are in the 40s and 50s now so it should be more comfortable and the metal thermos bottles will be great for keeping warm water nearby.

Mikenh said:

I sent an email to the

I sent an email to the oncologist at Dana Farber this morning asking about the schedule after Adjuvant Chemo and he said that they take a CT scan three months after chemo ends and then plan for the reversal and port removal. They will see me every three months for two years and then every six months for three years. The surgeon will do a colonoscopy 6-9 months after reversal and then annually for at least two years. CT scans annually for three years. I was hoping to move faster but I guess they want to make sure that there's nothing floating around before undoing the bag and port. I guess I may need more illeostomy supplies.

Mike:

My reversal schedule and all other post CRC events are similar to what DF is recommending for you.  I was so impatient when my oncologist imposed a three month wait after the end of chemo before the reversal surgery. 

However, after going through only three weeks of chemo (compared to your twelve), I now understand the value of that delay.  I needed strength to experience the reversal surgery.  Had my surgery been conducted sooner then I would have really been challenged physically.  Mentally I was so prepared to get rid of the ileostomy, but little did I know how important it was to also be physically prepared.

Think long term.

Jim

Mikenh said:

Thanks for replying. You're

Thanks for replying. You're actually the first person that I've heard have to wait three months. Most of the people that I've read or heard from had the reversal one month after the end of chemo.

I went to the YMCA at lunchtime; something that I haven't done in many months; maybe last year was the last time I did that. I spent about 15 minutes on the weight machines and walked for 30 minutes. It felt quite good. I also did some flexibility work early this morning and will do something this evening; maybe yoga or free weights. The weather is really nice and inspiring even though I'm working out indoors. I have definitely lost strength over the last six months but I think that most of that has been due to the Oxaliplatin and the bag in that I get less sleep with the bag. I have another five weeks on chemo and I do plan to get back into some kind of decent shape. It won't be anything like it was before chemo and radiation but it will be better than it is now. It took me about two weeks to feel 95% after neo-adjuvant chemo and radiation but that was only six weeks. Six months has taken a bigger toll and it might take longer to recover. But three months? Actually four with the wait to schedule surgery. I suspect that I could get back to running two or three miles a day in that time - despite the bag. I'm going to have to look at different supplies for the bag - maybe something with a bigger opening because of all the movement with running.

I guess I'll see what the surgeon says. My follow up with the local oncologist is two weeks after the last chemo pills and we'll see what he says as well. I suspect that he'll say the same thing. What's curious to me is why just about everyone else I've read about has it done a month after; (I did read some people that had it two montsh after).

Mike:

You may be able to convince them otherwise based upon your high level of physical activity and the commensurate strong metabolism that results.  I accepted mine because the surgeon had already established his recovery timeline and as it turned out since I terminated my chemo early I was still within that window.  Had I had to wait longer then I would have been very unhappy.  But, my reversal surgery was a tough procedure and that recovery interim was beneficial.

I will send you a personal message reference my recovery from the reversal and what my life is like now.  That may help answer some of your questions regarding bowel control, diet and life-in-general post reversal.  For me it has all been good, not perfect, but good compared to the average result.

Jim

Cindy225 said:

Feeling Good

Hi Mike – My surgeon and oncologist have me on a similar schedule.  Only difference is that I will see my oncologist every 3 months for 3 years then 6 months for 2 years given aggressive LVI from original diagnosis.  When I saw the oncologist at 18 months my husband and I thought we were on the victory lap given NED status. He reset our expectations that watershed milestones are 2 and 5 years and not to focus on them. Still need to be vigilant about recurrence and symptoms.

I stayed as active as possible while on chemo and non-chemo weeks were better.  I used the C25K app to do a mix of walking and running that made it easier to build endurance.  Using the stealth belt helped stoma baby stay in place.  Also, the output stopped while I was active. All in all, I felt better being outside or in the gym as it gave me encouragement that I could get some parts of my life back.  

Of course, with the reversal surgery I had to start over again but I did it and feel that I’m at a good place right now living with the new normal.  Be realistic and easy on yourself with timing and how much you can do as everything you do is getting you closer to where you want to be.

Cindy

I'm a big fan of C25K as it has helped so many people improve their lives. This is my third day of 5 miles of walking and I'm trying to keep the streak going. Last night I had a good sleep (as good as possible waking up every three hours) due to the weights work yesterday. I got in stretching, floor work, weight machines and a walk early this morning and had a walk this evening. It is tiring though but I want to get to the point where my endurance is a lot better.

I've been thinking of ordering with a larger stoma opening. I think that my stoma got bigger and that my current one may be slightly small. It would provide a bit more comfort if and when I do some more running. The stealth belt helps a little but I find that I am better off emptying it from time to time. I generally workout with a nearby bathroom. I'll see how long I can keep up the physical stuff. Work has quieted down quite a bit and that really helps.

I think that I'll let the surgeon decide without my influence on the timing. I really don't want to be a "bad patient".

Mikenh said:

Reversal surgery is scheduled for the end of July.

I met with the oncologist today and he gave me my CEA number at 4.5 which was negative news. Normal is 3.8 or lower. So it has been accelerating. I go in for a CT scan tomorrow.

I feel pretty good generally though I'm often tired but that's expected given my workouts. I also need to get my port flushed as I skipped the last Oxaliplatin infusion.

I do have CEA anxiety.

What was the number before? And how long is this after stopping chemo?

Ruthmomto4 said:

Has it doubled?

doubling is MAYBE a cause for concern, but tiny fluctuations is not a big deal. On the test they do for my husband the normal values listed are 0-5.0 so it also depends on the test. CEA sucks and it gives everyone anxiety, hoping your scan helps you feel less worried and shows nothing!

It was 2.8 at diagnosis and went down to 1.8 on Chemo and Radiation. Then down to below 1 after surgery but it was a different lab. Then 1.8 to a high of 4.5 over the Adjuvant chemo. I finished chemo three weeks ago which is not a long time. Someone else had the same thing and it started going down a few months after finishing chemo. My fitness center manager wondered if it was due to my walking as there may be inflammation that I don't see in my body related to my workouts. She said that 100 miles per week is pretty stressful on the body even though it doesn't feel like it.