The Colon Club

Gravelyguy wrote:

NHMike wrote:Saw the Oncologist this morning. Scans were clean and I assume that bloodwork was too as he didn't mention it. He asked how I was doing and I showed him the VO2Max stuff and he asked some questions about the tracker. He said next visit is 6 months. So 1.5 years of 3-month and I guess 6-months for a while and then maybe 12.

Mike,

That is pretty much the same schedule as me. I have been every 6 months after the 1 1/2 year mark. I still get my CEA checked locally every 3 months between visits to Mayo. I am taking it as a good sign! At my last visit they said every 6 months for the first 5 years then yearly until year 10. 10 years is when Mayo defines cure from stage 4. I have to admit, I kind of appreciate the check ups. It is like every 6 months I get to make a check mark on my countdown to cure!

Glad your VO2 is good for your age. I have found that my lung capacity is not what it once was and I know I had issues during chemo and surgeries. It is getting better and I was able to run several miles at 8:30 pace on the treadmill Wednesday. Last year at this time I was trying to get under 12 min. pace so I have come a long way. It is nice to have benchmarks to see the progress!

Dave

It sounds like you are living your life. My cardio capacity is still nowhere near where it was before diagnosis and there are times when I'd like to retire and just workout four hours a day but it is nice to not have to worry about income and health insurance and the stuff I'm doing is interesting. I am still contemplating a Keiser m3i for home to improve cardio capacity while taking it easy on my joints.

susie0915 wrote:I have been monitored by a pulmonologist since my ct scan after finishing treatment. Lung showed inflammation and scarring. Nothing mentioned on scans before treatment. My oncologist doesn't believe it is caused by chemo, but I'm not so sure. I do breathing tests every six months and also am being monitored for an auto immune disorder as they can cause lung issues. Tests are inconclusive for sjogrens, scleroderma, lupus, and rheumatoid arthritis. I do have raynauds and have since before cancer so that is why an auto immune disorder is being looked at. So far everything has been pretty good, but I do see more doctors than ever. I also am being monitored by a rheumatologist. I dont know if it's good that these issues are being picked up since we have so much testing or not knowing since I feel fine would be better.

One thing about getting the CT scans is how many things show up as normal - that's the good news. So we really focus on the stuff that's called out. I never had scans before this so I didn't know how things were really doing but I did feel great in the past. I can't really say that I've felt great in a while but that's because of the pace of life and I think that we all feel those kinds of pressures in modern life.

Could chemo cause problems? Maybe not directly but it could change something with leads to other problems. I am hoping that time makes things better but that may not be realistic.

My experiments without dairy for the past week or more show fewer problems without dairy. Unfortunately I like cream in my coffee but it looks like I will have to do without it. I've played around with plant-based substitutes in the past and I don't find them helpful.

I got the bills for the appointments earlier this month. I guess I should expect them but I guess they're so infrequent now that I forget. What happens is that my insurance company sends me an email, I check their portal and it shows me my portion, then the bills show up in the hospital portal a day or two later and I pay them. My max Out-of-pocket is $2K/year so I pay $2K/year.

NHMike wrote:My experiments without dairy for the past week or more show fewer problems without dairy. Unfortunately I like cream in my coffee but it looks like I will have to do without it. I've played around with plant-based substitutes in the past and I don't find them helpful.

I switched to a milk substitute called Oatly, made in Sweden and based on oatmeal. The whole family liked it...today I ran one hour and 15 min in the snow and it was heavy, but seeing my dog running free in the forest is priceless.

All the best

Claudia

Atoq wrote:

NHMike wrote:My experiments without dairy for the past week or more show fewer problems without dairy. Unfortunately I like cream in my coffee but it looks like I will have to do without it. I've played around with plant-based substitutes in the past and I don't find them helpful.

I switched to a milk substitute called Oatly, made in Sweden and based on oatmeal. The whole family liked it...today I ran one hour and 15 min in the snow and it was heavy, but seeing my dog running free in the forest is priceless.

All the best

Claudia

I have seen Oatly before, maybe at Whole Foods.

I ran outside for just a mile - wind-chill was 20-25 and it was uncomfortable. I will need to experiment a bit more with clothes. Today is in the 50s so I'll run outside again but I still am doing most on the treadmill these days. You and Gravel are tearing up the road.

I'm going to have to find some YouTube videos of running in the snow. I have a hard time imagining it.

We're pretty concerned over COVID-19 as there are two cases within 100 miles now and they likely spread it to others.

NHMike wrote:My max Out-of-pocket is $2K/year so I pay $2K/year.

My max out-of-pocket is close to that and I pay it every year too. In some ways, I wish I could just pay it up front instead of getting all those individual bills over the year. Somewhere around the end of the summer I'm paid up and everything is free from then on. Back when I was in constant treatment I was paid up by March of each year so I can tell my health is improving!

juliej wrote:

NHMike wrote:My max Out-of-pocket is $2K/year so I pay $2K/year.

My max out-of-pocket is close to that and I pay it every year too. In some ways, I wish I could just pay it up front instead of getting all those individual bills over the year. Somewhere around the end of the summer I'm paid up and everything is free from then on. Back when I was in constant treatment I was paid up by March of each year so I can tell my health is improving!

Similar to my experience. With six month intervals: the CT scan + Onc + Bloodwork covered $1K. I might not get to the max OOP this year as the August appointment is only Onc + Bloodwork. That is unless I have additional appointments. It's nice not to see the six-figure total annual costs, even if my payment was a very small portion of that.

I had a nice run outside today but it was shorter than I like as I was at work most of the day.

I had a lot of output today, some uncontrolled. And I wondered what would cause it and then I remembered that I had Kombucha yesterday - which I believe is a probiotic drink. My previous experiments with probiotics had the same result so I don't plan to drink it anymore. Though it might come in handy when I want to speed things up.

Glad you could figure out what caused the issues, Mike.

It is so strange how our bodies adapt so differently to all of this. Probiotics seem to really help me. I was having issues with frequency and loose stools about a month ago. It was really getting me down. I stopped taking my magnesium supplement and since then I have been near normal. When I started taking it, it really seemed to help me clean out early in the day and cut down on clustering. For some reason that all changed and I was to the point of dusting off my emergency bag. Since going off the magnesium, I have had zero accidents and am back to bringing nothing extra with when I head out for the day. I still get gas from time to time and I wish that would go away but it is certainly better than feeling like you may not make it to the bathroom!

Glad you had a good run. It is still a little icy here in MN to run outdoors. The treadmill is my friend for a little while longer but can't wait to get outside!

Gravelyguy wrote:Glad you could figure out what caused the issues, Mike.

It is so strange how our bodies adapt so differently to all of this. Probiotics seem to really help me. I was having issues with frequency and loose stools about a month ago. It was really getting me down. I stopped taking my magnesium supplement and since then I have been near normal. When I started taking it, it really seemed to help me clean out early in the day and cut down on clustering. For some reason that all changed and I was to the point of dusting off my emergency bag. Since going off the magnesium, I have had zero accidents and am back to bringing nothing extra with when I head out for the day. I still get gas from time to time and I wish that would go away but it is certainly better than feeling like you may not make it to the bathroom!

Glad you had a good run. It is still a little icy here in MN to run outdoors. The treadmill is my friend for a little while longer but can't wait to get outside!

Magnesium might be a problem for me as well. I've been taking it as I'm running more and there's a bottle on the dining table so I just grab a few when I have cramps. I just looked at the other three options: Calcium, Sodium and Potassium and the other three have the opposite effect - constipation. I sometimes wonder if that's why potatoes slow things down. I think that I should look into Potassium supplements. It would actually be nice to have both as sometimes I want to slow things down and sometimes I want to speed things up.

NHMike wrote:Magnesium might be a problem for me as well.

I'm a runner so I take magnesium and potassium daily. I'm also chronically low in vitamin D, and magnesium plus a D3 supplement helps boost my levels.

However, I take "magnesium glycinate." It's easier to absorb magnesium in this form (as opposed to mag oxide or mag citrate), plus it doesn't cause as many side effects such as loose stools. I also take 99 mg of potassium every day too.

Juliej

Hi Mike, Good to hear you are doing well.

Julie, Interesting that you've read that glycinate is most absorbable. I have read that citrate is the most absorbable form. Could you please provide a link? thanks!

I haven't been to Whole Foods to look for Potassium yet but I'll look for it on my next trip. I did some hills today and that's really different. We have lots of hills where I work but it's flat at home so I will try to do hills on a regular basis. What I've found is that running on a treadmill or track is better for improving VO2Max and I suspect that this is due to a lot of deceleration for traffic, obstacles and uneven terrain. Just being able to run straight ahead is better for working on speed.

Big worry these days is COVID 19. I imagine there's a thread here for that already given that it's a big concern if you're older like many of us or particularly if you're on chemo.

I'd guess that everyone is trying to figure out the new normal with finding toilet paper or sanitizing wipes to figuring out how to go to their hospital now. I've received a number of emails from Dana Farber on increasing restrictions on patient visits and also from Brigham and Womens. My next appointment isn't until August and it would be nice if this finished by then. I noticed that Italy's numbers are decelerating so there's some hope there.

We have 101 cases in my state as of today and probably 16 in my county. The mayor of the cities north and south of me have asked the Governor to issue a Shelter In Place order but he hasn't done so yet. Massachusetts has issued a Shelter in Place advisory but it's not an order, it's a strong recommendation.

We have had three people in the hospital, none serious. One has since left the hospital.

We have had one death in the state, reported today, and he's in my county. He's 60+ with preexisting conditions. I had a meeting with my group today. Four out of five in NH are 60+ with preexisting conditions. So it's a bit of a worry that the numbers are rising. My sister in the Boston area is freaked out because she can't get things. Boston is nothing compared to New York City. They have half the cases there and they look like they are in real trouble. I can't tell if our state will be able to achieve containment.

Scary times.

I hope everyone has a solution for getting through our current problems.

I haven't run in over a week because of work, weather and all three of my gyms closing. I do hope to get back to it but we're getting 4-7 inches of snow this evening which makes it worse. If Mayors or Governors issue SiP orders, then I'll have to figure things out. Doing bodyweight and barbells at home for now.