Rectal cancer (Stage 3A) diagnosed late June 2017

[heiders33]

Do you think your oncologist will actually drop your dosage? I have all kinds of side effects, but my onc will only drop it if persistent neuropathy sets in. It seems like that’s starting to happen so I may only go four full strength rounds, but we’ll see.

[rockhound]

I was able to exercise during chemo most days. If I felt okay I would exercise. Sounds like you are tolerating everything pretty well so far Mike. Good to hear.

Well, it's different to be sure.

The concern over lifting weights is the LAR and how long it would take for me to be able to lift heavy things without damaging the abs muscles or causing a hernia. I want to get back to doing planks, mountain climbers, crunches, pullups, dips, rotary torso and get the whole core area strong again. I plan to order a wrap so that I can try running but I'll order stuff after the crazy shipping season is over.

Just remember your ileostomy is technically a hernia- my surgeon reminded me that a few times to make sure I was not going to push it via the weights. So I did fairly light stuff. Did not swim due to the ileostomy also, but ended up walking/jogging a lot which was nice (even hooked to pump!). Lots of hand cramps when I was out walking/running - that was a fun folfox symptom! Good you are tolerating the chemo; let your Drs. know if the neuropathy does not go away after a few days; usually I would have 3-5 days of side-effects then things would be fine..

Also don't be surprised if your output gets really runny on the chemo; mine did at least then thickened up a bit after a few days. Another fun side-effect.

[susie0915]

Do you think your oncologist will actually drop your dosage? I have all kinds of side effects, but my onc will only drop it if persistent neuropathy sets in. It seems like that’s starting to happen so I may only go four full strength rounds, but we’ll see.

My oncologist reduced my xeloda due to diarrhea, because I did have my ileo reversed early due to blockage. I think she reduced the oxi once because of the weight loss caused by the diarrhea.

[NHMike]

Mike:
Be aware that fresh pineapple is known to be problematic for individuals with an ileoatomy.

The problem with pineapple that makes it a high risk is it’s high insoluble fibrous content. The pineapple, even well chewed, is known to form a stingy bolus as it oasses through the small intestine giving rise to an obstruction. A fibrous bolus of pineapple is also prone to getting stuck as it tries to exit through the stoma (the stoma not able to expand sufficiently to allow a large wad of stringy pineapple fiber).

The same caution is also true of cocconut. And artichoke leaves. And celery stalks. And mushrooms (not otherwise finely diced).

I would not choose eating pineapple as a means of thickening your ileostomy output.

If your ileostomy output is highly liquid and of high volume and you want a means of thickening the output, I recommend using gel packets that you place in the pouch (called Diamond packets). The packets are a composed of water-attracting micro-beads. In the presence of ileostomy output, the gel packets turn liquid output into a gelatinous consistency. The packets also are a protective measure against developing wafer leaks (gelatinous output consistency is unable to undermine the wafer - which is a primary etiology of wafer leaks).

If you genuinely are hungry for pineapple, enjoy 1-2 cubes well chewed, chewed, and chewed and downed with water. Enjoy a single macaroon cookie but refrain from eating 3-4 macaroons.

Intestinal obstructions are really painful and absolutely no fun.

Wishing for you continued minimal side effects as you navigate your post surgery chemotherapy and restored health for 2018,
Karen

Well, this complicates things.

I had broccoli soup this evening - minced in a blender.

[NHMike]

Do you think your oncologist will actually drop your dosage? I have all kinds of side effects, but my onc will only drop it if persistent neuropathy sets in. It seems like that’s starting to happen so I may only go four full strength rounds, but we’ll see.

I can always ask.

I need to figure out what neuropathy is. I'm not completely sure that I have it. It's possible that I'm confusing it with cold sensitivity.

[NHMike]

I was able to exercise during chemo most days. If I felt okay I would exercise. Sounds like you are tolerating everything pretty well so far Mike. Good to hear.

Well, it's different to be sure.

The concern over lifting weights is the LAR and how long it would take for me to be able to lift heavy things without damaging the abs muscles or causing a hernia. I want to get back to doing planks, mountain climbers, crunches, pullups, dips, rotary torso and get the whole core area strong again. I plan to order a wrap so that I can try running but I'll order stuff after the crazy shipping season is over.

Just remember your ileostomy is technically a hernia- my surgeon reminded me that a few times to make sure I was not going to push it via the weights. So I did fairly light stuff. Did not swim due to the ileostomy also, but ended up walking/jogging a lot which was nice (even hooked to pump!). Lots of hand cramps when I was out walking/running - that was a fun folfox symptom! Good you are tolerating the chemo; let your Drs. know if the neuropathy does not go away after a few days; usually I would have 3-5 days of side-effects then things would be fine..

Also don't be surprised if your output gets really runny on the chemo; mine did at least then thickened up a bit after a few days. Another fun side-effect.

I got the stomahesive powder today so I'm going to use the Convex wafers which worked really well when the Stoma Nurse installed it. I just hope that I can do as good a job. I plan to use Cavilon spray, the powder and the paste.

[heiders33]

I was told that neuropathy is when you have persistent tingling and numbness in the hands and feet, unrelated to cold. I’ve definitely had some persistent tingling in my fingers and some in my feet, although it’s not constant. I told my onc and he said he will definitively discontinue treatment after the fourth round if it gets worse. I haven’t had any numbness although I have tended to drop some things.

[Shana]

Mike:
Be aware that fresh pineapple is known to be problematic for individuals with an ileoatomy.

The problem with pineapple that makes it a high risk is it’s high insoluble fibrous content. The pineapple, even well chewed, is known to form a stingy bolus as it oasses through the small intestine giving rise to an obstruction. A fibrous bolus of pineapple is also prone to getting stuck as it tries to exit through the stoma (the stoma not able to expand sufficiently to allow a large wad of stringy pineapple fiber).

The same caution is also true of cocconut. And artichoke leaves. And celery stalks. And mushrooms (not otherwise finely diced).

I would not choose eating pineapple as a means of thickening your ileostomy output.

If your ileostomy output is highly liquid and of high volume and you want a means of thickening the output, I recommend using gel packets that you place in the pouch (called Diamond packets). The packets are a composed of water-attracting micro-beads. In the presence of ileostomy output, the gel packets turn liquid output into a gelatinous consistency. The packets also are a protective measure against developing wafer leaks (gelatinous output consistency is unable to undermine the wafer - which is a primary etiology of wafer leaks).

If you genuinely are hungry for pineapple, enjoy 1-2 cubes well chewed, chewed, and chewed and downed with water. Enjoy a single macaroon cookie but refrain from eating 3-4 macaroons.

Intestinal obstructions are really painful and absolutely no fun.

Wishing for you continued minimal side effects as you navigate your post surgery chemotherapy and restored health for 2018,
Karen

Thanks for sharing that info, Karen! Your personal knowledge is so helpful. I had no idea about pineapple, I found out about shitake mushrooms on my own as well as some of the other foods that you listed. I was never given any guidelines on what foods to be careful eating or which to avoid.

Good luck with your ongoing treatment, Mike. Your journey is epic and I look forward to your chapter in NEDville!

[susie0915]

I was told that neuropathy is when you have persistent tingling and numbness in the hands and feet, unrelated to cold. I’ve definitely had some persistent tingling in my fingers and some in my feet, although it’s not constant. I told my onc and he said he will definitively discontinue treatment after the fourth round if it gets worse. I haven’t had any numbness although I have tended to drop some things.

I definitely have neuropathy in my feet. I would feel a little after infusion then went away. A month after finishing it really became permanent. Too bad I prob could've had my oxi reduced if my symptoms were more prevalent during chemo. Oh well, I don't drop things anymore, my hands are pretty good. Feet def tingle and can be numb. Mostly just uncomfortable on hard surfaces when barefoot, but no real pain. I can still do whatever I want, helps to keep moving. Feels weirdest when I wake up in the morning. I probably will just have to live with it, but that's okay.

[rockhound]

I got the stomahesive powder today so I'm going to use the Convex wafers which worked really well when the Stoma Nurse installed it. I just hope that I can do as good a job. I plan to use Cavilon spray, the powder and the paste.

sounds like a good combo for you - good luck!

Re: the weights, etc. I ended up going to a phys. therapist while I was doing chemo- he had lots of good suggestions, etc. to help me strengthen my core and be cognizant of the stoma, etc. It's really helped post-reversal.

[NHMike]

I got the stomahesive powder today so I'm going to use the Convex wafers which worked really well when the Stoma Nurse installed it. I just hope that I can do as good a job. I plan to use Cavilon spray, the powder and the paste.

sounds like a good combo for you - good luck!

Re: the weights, etc. I ended up going to a phys. therapist while I was doing chemo- he had lots of good suggestions, etc. to help me strengthen my core and be cognizant of the stoma, etc. It's really helped post-reversal.

I know that I can rebuild after reversal but I don't want to lose too much through the process. But I don't want to injure myself either.

[O Stoma Mia]

...Also don't be surprised if your output gets really runny on the chemo...

NHMike - Do you have a 'metric' for stoma-bag diarrhea? Do you have a reliable way to tell if you are at Grade 2 or Grade 3 diarrhea?

You need to have some way to reliably tell that you have lost more fluids and electrolytes than normal. If and when diarrhea reaches Grade 3, there is an urgent need to contact the doctor to take corrective action before serious organ damage occurs.

[NHMike]

...Also don't be surprised if your output gets really runny on the chemo...

NHMike - Do you have a 'metric' for stoma-bag diarrhea? Do you have a reliable way to tell if you are at Grade 2 or Grade 3 diarrhea?

You need to have some way to reliably tell that you have lost more fluids and electrolytes than normal. If and when diarrhea reaches Grade 3, there is an urgent need to contact the doctor to take corrective action before serious organ damage occurs.

My warning sign on electrolytes is cramps. If I'm not getting enough electrolytes I will have cramps, typically in my calves and sometimes my feet. I think that most athletes will have had some experience with losing fluids and electrolytes to the point of not being able to continue due to cramps or otherwise not being able to perform. I had cramps overnight the past three nights which coincides with starting chemo but I also did some weightlifting exercises that stressed the feet, calves, wrists and forearms. I had cramps in the calves and soreness or arthritic feelings in the other parts. But I can get that if I haven't exercised those muscle groups in a long time and then start up again. In my case, I was walking around for a few minutes carrying around 40 pounds which normally isn't very much but I hadn't done this for maybe four months so maybe it was weightlifting stress. I did do curls with heavier weights three months ago but I think that you lose 5-10% per week if you don't lift regularly.

I am getting a fair amount of water and a lot of electrolytes so I do not expect that I'm dehydrated and my weight is steady to rising a bit.

So, unfortunately, a lot of things going on at the same time which is confusing things. I did one of my old workouts today, mainly stretching things, and I was amazed at how much flexibility I've lost. I'm hoping that nothing is sore in the morning - probably unlikely from just stretching; but I did do a number of squat-like exercise which are also stretches.

I have to pay attention to hydration in terms of fluids and electrolytes as it impacts health and performance for athletes and I've been doing this for decades. This is a common discussion area in the Health and Fitness section of my tennis forums as you can be out on the tennis courts in 90 degree humid weather and you'll lose a ton of fluids and electrolytes in those conditions. You have world-class athletes that have to retire playing in these kinds of conditions.

[tarheelmom]

Marshmallows worked wonders for thickening my stoma output

[Aqx99]

...Also don't be surprised if your output gets really runny on the chemo...

NHMike - Do you have a 'metric' for stoma-bag diarrhea? Do you have a reliable way to tell if you are at Grade 2 or Grade 3 diarrhea?

You need to have some way to reliably tell that you have lost more fluids and electrolytes than normal. If and when diarrhea reaches Grade 3, there is an urgent need to contact the doctor to take corrective action before serious organ damage occurs.

My warning sign on electrolytes is cramps. If I'm not getting enough electrolytes I will have cramps, typically in my calves and sometimes my feet. I think that most athletes will have had some experience with losing fluids and electrolytes to the point of not being able to continue due to cramps or otherwise not being able to perform. I had cramps overnight the past three nights which coincides with starting chemo but I also did some weightlifting exercises that stressed the feet, calves, wrists and forearms. I had cramps in the calves and soreness or arthritic feelings in the other parts. But I can get that if I haven't exercised those muscle groups in a long time and then start up again. In my case, I was walking around for a few minutes carrying around 40 pounds which normally isn't very much but I hadn't done this for maybe four months so maybe it was weightlifting stress. I did do curls with heavier weights three months ago but I think that you lose 5-10% per week if you don't lift regularly.

I am getting a fair amount of water and a lot of electrolytes so I do not expect that I'm dehydrated and my weight is steady to rising a bit.

So, unfortunately, a lot of things going on at the same time which is confusing things. I did one of my old workouts today, mainly stretching things, and I was amazed at how much flexibility I've lost. I'm hoping that nothing is sore in the morning - probably unlikely from just stretching; but I did do a number of squat-like exercise which are also stretches.

I have to pay attention to hydration in terms of fluids and electrolytes as it impacts health and performance for athletes and I've been doing this for decades. This is a common discussion area in the Health and Fitness section of my tennis forums as you can be out on the tennis courts in 90 degree humid weather and you'll lose a ton of fluids and electrolytes in those conditions. You have world-class athletes that have to retire playing in these kinds of conditions.

You will probably need to measure your output to help tell if you have diarrhea and to see how much fluid you are losing. The oxaliplatin always gave me muscle cramps in my calves and hands. I could barely walk out of the infusion center sometimes. After climbing the stairs in my home holding the handrail, my hand would stay in the clutched position until I forcibly straightened it out. I ate a lot of potatoes during chemo because they really thickened my output.