The Colon Club

I noticed last night that the Xeloda didn't have as strong an effect on me compared to the previous night so it may be that my body is getting used to it (I hope that's not the case with the cancer). Or it could have been some combination of food, humidity, barometric pressure and rest. The weather has been quite odd lately with warm days, cool and very humid nights and those conditions can mess up your sleep, even without cancer.

This morning, I was able to pass some with effort - the tumor is still there impeding things but it's taking somewhat less effort. I drove into the office early this morning and ran a mile on the treadmill and did some pullups (one of my favorite bodyweight exercises). It all felt quite good. I haven't run at all since starting the Xeloda as I was worried about losing balance or having some other problems. The weather hasn't been great for running comfortably for me either. I went into the office because the gym would be empty and I wouldn't have to worry about getting sick from someone else. I did wash my hands a lot. I started out with some stretching and was surprised at how much flexibility I've lost through the cancer stuff. I haven't been doing anywhere near the usual amount of stretching - normally it's 5-30 minutes a day.

The other thing complicating going to the gym is my schedule to take the Xeloda and to get in for radiation treatment. If I leave the house at 4:30 AM, then I'm hoping that I can get in an hour workout and get back home to prepare for the radiation treatments. This week they're at 10:00 AM so no problem but next week they're at 8:00 AM and that's the time for the rest of the treatment program. I would also like to start workouts at the YMCA as they have a lot of specialized equipment that I can't duplicate in my home gym or that's at the office gym. I would need to be very careful as gyms often harbor a lot of stuff that can make you sick.

I had diarrhea at the office before working out. I was quite surprised as I haven't had this for many, many, many months. Constipation was far more common, probably due to the tumor. This was before working out. After working out, I tried to go but there was nothing there. I picked up a bottle of Powerade yesterday and that's my backup drink if I'm worried about dehydration. I also added extra salt (and pepper) to help boost my electrolyte levels. I would like to get up to three miles of running a day and weights and stretching but I'm going to do this gradually.

I did some lunges at the Radiology place on Tuesday and I hadn't done them in several months. Well, needless to say, my butt (on the back outside) was quite sore yesterday and today. It's enough to wonder if your butt is sore because of radiation or constipation but to do a self-inflicted wound? I have a long list of exercises that look funny when you do them but they will exercise all of these muscles you never knew you had. If you do them regularly, then it's no big deal. But if you do them after not having done them in a while, your muscles will be quite sore for about three days. I'm a big advocate of core training as it helps to prevent injuries as we age and it can help to avoid muscle imbalances that result in repetitive stress injuries. A strong core might even help with surgical recovery.

I didn't feel all that well yesterday afternoon and was debating whether or not to take the pills. I had curry and potstickers and was feeling nauseous afterwards but decided to take them anyways after reviewing the list of things to call the oncologist for. I went to take a nap afterwards but didn't really feel better so I spent an hour vacuuming [which is pretty decent physical labor with a 17-pound cleaner]. I felt immensely better afterwards. This morning I had a huge amount of gas which might explain why I didn't feel well yesterday afternoon, and peed a great deal. I hadn't realized that I've been drinking so much but those two things could have made me uncomfortable.

I received an email from the MGH pathologist that they have received my biopsy block and that they are going to proceed with the genetic tests. My son told me that the tests should take one to two weeks. I don't really expect anything dramatic as the ImmunoHistoChemistry test indicated that I'm not MSS-High but you never know with this stuff and the tumor will get added to their database which may help in their research in the future.

I generally sign the forms allowing hospitals to do whatever research they want to on my samples as this contributes to advances in diagnosis, and drug development.

Update: 1.3 mile run this morning. It cleared up the constipation.

I hit tennis balls for about 30 minutes with temps around 90 degrees on the court. I thought that I was sweating excessively but my hitting partner indicated that he was sweating a lot and that it was hot. He said that I hadn't lost a step since the last time we played. Preparation and footwork were there which means the rest of my game was intact. It was nice to do something anaerobic that really got my heartrate pumping. I had been reluctant to do anything like that on chemo and I think that I'll still take it easy. I stopped at 30 minutes because I didn't want to push things. We originally planned to hit for 15 minutes but I felt fine and just kept going. Maybe we'll go for an hour next time.

what does 80% Regression mean?

I had curry and potstickers and was feeling nauseous afterwards

I would def. stay away from curry as it has spices that can trigger GI issues. My mom had to switch her diet while taking Xeloda. She has exactly 8 more days and she is doing okay. Her rear is def. sore. She does tucks pads, aquaphor, and the hemmy cream called "Proctozone" She is a hard head and will not take my advice on taking a sitz bath. She also has mentioned that her back is in pain. She has osteoporosis so I get worried about that. Anyhow, best of luck on a successful tx plan. Now my mom is nervous about surgeyr.

She's made it this far (and it still looks like a long road to me), so she just has to rest up for surgery.

I am not set up for a sitz bath. I know about them as I used to work in a hospital (40 years ago) and maybe my wife brought one home when she had our kids. I'm starting my second week tomorrow. Hoping that it goes smoothly for both of us.

I can't recommend enough a sitz bath to deal with the accumulating effects of radiation. I actually got one from the radiologist's office. I always had to meet with them once a week during the treatments and they had them on hand there for just such a reason. I also got a peri-rinse bottle from them as well for use when having a bowel movement when toilet paper felt like sandpaper. Hope you had a nice pill and radiation free weekend! One week down at least.

The chemobreak was nice. I got in 3 miles of running, some weights and yoga-type stuff and overall about 20,000 steps. We went to the beach yesterday and it was too windy and the water was too cold but it was a nice day to get away from home. I just mostly slept on the beach. It's back to chemo, radiation and work today. Probably similar for many others here.

NHMike wrote:... and you can probably tell that I like to write.
...
Please feel free to ask me questions and offer advice ...

If you like to write, then maybe you could consider starting a topic thread specifically for the purpose of journaling your 6 week chemo/radiation experience, with updates once a week describing any new Xeloda side effects and any new radiation side effects and how they were handled.

Just a thought...

Hello,

I just happened upon this thread (new here) and we are very similar, sans age. I'm sorry you have to be experiencing this. I'm 27, diagnosed stage 3A the middle of June. A couple of years ago they thought I had a prolapse but decided it was a hemorrhoid and put it back. I had bleeding after that consistently but was refused two flex sigmoidoscopies because of my age.

I am in MA and I initially started at Lahey. I had my diagnosis there and resection surgery at the end of June, robotic laparoscopic by a very talented Dr. who is now in the process of becoming head GI surgeon at Mass General. I had a lot of difficulty in the Boston area as well getting initial communication. Lahey dropped the ball. My oncologist there didn't seem interested or concerned about my situation at all and Lahey lost my FMLA paperwork twice. I decided to call Dana Farber. They took a week and many phone calls. In the end, the treatment recommended for me was the same across the board (FOLFOX) and I pulled out of Dana Farber to give other people the appointment spots who might've needed it more. I ended up at Mass General - they communicated with me immediately and got the ball rolling. They set up appointments for me with a great oncologist, social worker, fertility specialist, and radiation specialist (to weigh out pros and cons of radiation), and got me into chemo 3 weeks before Lahey even wanted to start me on it. I had a hard time with the FOLFOX and they got me everything I needed right away, including IV fluids and a hook up to 3 extra anti nausea meds. They provide free acupuncture and massage therapy. They have a 24/7 oncologist and a 2 9-5 GI nurses I can speak to with questions or concerns. I know you want to do the chemo and radiation locally - find a good place. Check out the facility and make sure you're comfortable there. Make sure you can call them anytime you need to. It's worth it.

Since you like to write, might I suggest keeping a journal? I've found it helped me a lot and it helps me keep track of my good and bad days, medicines, and symptoms. I also use social media to connect with other people going through this. Facebook has many great groups of people going through all of this that can share their experiences, ideas, information, and questions with you and because they're groups, it's private. I find it helps to be able to talk to other people on there. I don't know about local support groups though!

Good luck.

It sounds like things worked well for you at MGH. I was going to give them a call if I couldn't get in touch with DFCI - it sounds like it would have been faster and easier. Getting into MGH would be challenging though for me if I had to drive in. I'm in week 2 of chemo and radiation and things seem to be going well. I think that I've adapted to the body changes though I've read that things can keep changing week to week. I'm getting bloodwork done next week and would like to ensure that there are no problems.

I do keep a health journal and now a cancer journal. I'm not a Facebook person though.

It is nice to run into locals around here.

Mike, there's a lot of bone in the pelvic area and it's likely the radiation will impact your bone marrow's ability to produce blood cells. I know all my counts dropped to below normal levels during radiation, and I believe this is one of the main causes of fatigue and the inability to exercise at the same intensity as before diagnosis.

prs wrote:Mike, there's a lot of bone in the pelvic area and it's likely the radiation will impact your bone marrow's ability to produce blood cells. I know all my counts dropped to below normal levels during radiation, and I believe this is one of the main causes of fatigue and the inability to exercise at the same intensity as before diagnosis.

Just hit tennis balls for 30 minutes and tailed off near the end. I don't have as much energy as I did before diagnosis but I thought that was due to not working out. I guess it could be caused by the radiation though maybe the effects are cumulative. At any rate, I feel in decent, though not great shape and I really want to continue working out as it makes me feel better and I want to be strong for the surgery and recovery. We'll see how things go the next four weeks.

Regarding: " I don't have as much energy as I did before diagnosis"

After my IIIb diagnosis, I applied tremendous focus on getting in shape for the upcoming surgery and battle. I started out being moderately sedentary, with my exercise choice being laps in the pool. At first it was one or two laps and I was whipped. I kept at it even before starting treatment and got up to 10-15 laps, then 20, then 30, and was finally hitting 40 laps in the pool when the effects of treatment began to sink in. Not to mention I couldn't swim at all with the chemo machine hooked up to me for five days at a time.

By the end of treatment I could barely walk and resigned myself I would never again see the upstairs at our house. Just too difficult. So, my message is to expect degradation in energy and vitality, and don't worry about it. It's just a natural part of the process as your body uses energy to do other things, like fight off the cancer and deal with the rigors of treatments and chemicals. My side effects and negative reaction to treatment was the most difficult I have ever read in this forum, with the exception of one other person. So if I made it through that you can as well.

Regarding a possible colostomy, I wouldn't focus negative energy on that. I went through that along with many others. There is natural fear or apprehension of the unknown, but it's not a big deal. Modern equipment and appliances makes that a much different experience than what was the norm decades ago.

Now more than ten years later, life is good. I hope you have the same positive experience and outcome I have enjoyed. But you must endure the rigors of treatment and the recovery as part of that, of course. I'd keep at the exercise as you are able to, but not get too worked up as you lose some energy and vitality.

CaliforniaBagMan wrote:Regarding: " I don't have as much energy as I did before diagnosis"

After my IIIb diagnosis, I applied tremendous focus on getting in shape for the upcoming surgery and battle. I started out being moderately sedentary, with my exercise choice being laps in the pool. At first it was one or two laps and I was whipped. I kept at it even before starting treatment and got up to 10-15 laps, then 20, then 30, and was finally hitting 40 laps in the pool when the effects of treatment began to sink in. Not to mention I couldn't swim at all with the chemo machine hooked up to me for five days at a time.

By the end of treatment I could barely walk and resigned myself I would never again see the upstairs at our house. Just too difficult. So, my message is to expect degradation in energy and vitality, and don't worry about it. It's just a natural part of the process as your body uses energy to do other things, like fight off the cancer and deal with the rigors of treatments and chemicals. My side effects and negative reaction to treatment was the most difficult I have ever read in this forum, with the exception of one other person. So if I made it through that you can as well.

Regarding a possible colostomy, I wouldn't focus negative energy on that. I went through that along with many others. There is natural fear or apprehension of the unknown, but it's not a big deal. Modern equipment and appliances makes that a much different experience than what was the norm decades ago.

Now more than ten years later, life is good. I hope you have the same positive experience and outcome I have enjoyed. But you must endure the rigors of treatment and the recovery as part of that, of course. I'd keep at the exercise as you are able to, but not get too worked up as you lose some energy and vitality.

You have had a great results with surviving ten years.

Yesterday I probably overdid it. I got in 30 minutes of tennis, barbell exercises and a bunch of bodyweight exercises. I felt nauseous last night but some food cleared that up. I'm sore in my back, butt, right arm, with a little minor soreness in other areas. But I slept really well. I'll probably feel it for a day or two. I will try to maintain some kind of workout schedule but we'll see what I can handle. Thanks for your experiences.