Mikenh and Surgery

Mikenh

Rough day today. We have

Rough day today. We have freezing rain outside and I had to move the car for the plow to clear the driveway. There was two inches of snow under 3/4 inch of ice and I had to remove that before moving the car. So fingers and toes were numb and my eyes were getting there. This is at 32 degrees outside. This sort of thing is normal for our weather here.

darcher

Xeloda and a port?

 Why both?   That seems like a lot to endure.   Here I am whining about what Xeloda itself might be like in January.  If I had to do both I'd be one pissy brat.  The dentist, well thats a whole nuther story.  Turns out I metabolize their pain killer a little too quick.  Just to get it to work they have to give me bonus pokes.  Any grinding past 45 minutes post shots and I'm jumping in the chair.  I had to get a few boosters just to make it through the last session and I still have 3 more visits to do.  Good god,  pain wise it's worse than the chemo and radiation.  Now I remember why it's been the better part of 25 years since I have visited a dentist.

Mikenh

darcher said:

Xeloda and a port?

 Why both?   That seems like a lot to endure.   Here I am whining about what Xeloda itself might be like in January.  If I had to do both I'd be one pissy brat.  The dentist, well thats a whole nuther story.  Turns out I metabolize their pain killer a little too quick.  Just to get it to work they have to give me bonus pokes.  Any grinding past 45 minutes post shots and I'm jumping in the chair.  I had to get a few boosters just to make it through the last session and I still have 3 more visits to do.  Good god,  pain wise it's worse than the chemo and radiation.  Now I remember why it's been the better part of 25 years since I have visited a dentist.

Your post brought back

Your post brought back memories of Dustin Hoffman in Marathon Man in the dentist's chair.

The port is for the Oxaliplatin. I was not sure as to whether or not I would need it but it seems like most people go with the port to avoid damage to their veins from the infusions. Now my infusions are only the Oxaliplatin and not the Oxaliplatin and the 5FU so it may have been a lot easier for me to go with the arm but my veins, particularly on my right arm, aren't that good and I've had nurses hunting around my right arm for good spots. The left arm is much better but, between blood draws and infusions, I'd rather not overuse a good thing. So the question is are veins good enough for Oxaliplatin by itself? I don't know and I've already done it.

My body tolerates Xeloda quite well but the Oxaliplatin is rough. I think that far fewer people have problems with Xeloda/5FU than they do with the Oxaliplatin.

Sorry on the dental stuff. I have bad teeth and it runs in my family. A good part of the problem is overcrowding and the modern approach to that is to remove teeth so that there's good spacing but they didn't do that when I was a teenager. I had a lot of dental work removing amalgam fillings and replacing them with resin and porcelain and the latter stuff lasts and performs better than the original teeth. So I'm glad that I had the work done in my 30s. I generally don't need painkillers for dental work except for root canals - I just endure the drilling pain.

I tried to do a root canal without painkillers but that didn't work well so they gave it to me and he continued drilling. That was rough and he said that he'd never do that again. Yes, dental pain can easily be far worse than chemo and radiation but at lesat you know that it won't last that long. You're likely to get some really long-lasting crowns that are strong and that will resist decay so hopefully those teeth are good for 30 years or more.

I particularly hate seeing this huge needle in front of my face that I know is going into my gums. Sometimes it might be easier going into the hospital to have it done under a general. That's the way I had two wisdom teeth removed a long time ago.

 

 

Mikenh

I cleared off one car this

I cleared off one car this mornng but it only took five minutes as it was just ice on the windshield and the temperature was right around freezing. I completely cleared off another car a little later which took me about 40 minutes. This was the two inches of snow under 3/4 inch of ice type thing and I like to do a neat job of it. Today I switched to a pair of old Marmot gloves which are waterproof and have a nice, soft lining. This did the job today as my fingers were dry. Yesterday it was raining and about 25 degrees so staying outside for a while with fleece gloves meant that the water got in and felt numbingly cold. Today was a little warmer and no precipitation. We're getting 3-6 inches tonight and tomorrow so I need to do a little work on the roof before the storm and some work during and after. I only had some cold sensation on my nose and chin from the 40 minutes outside so maybe the Oxy is wearing off or I'm getting used to what feels like frostbite. I will check Costco today for the Balaclava and ski mask combination and look to go full ninja when outside.

I was actually quite comfortable in the mid-30s and felt like taking a walk in the stuff - if only there wasn't so much ice on the driveway. It should melt today as we get into the mid-30s and then freeze over again. We have very cold temperatures moving in for the next ten days, down to low single digits.

Canadian Sandy

darcher said:

Xeloda and a port?

 Why both?   That seems like a lot to endure.   Here I am whining about what Xeloda itself might be like in January.  If I had to do both I'd be one pissy brat.  The dentist, well thats a whole nuther story.  Turns out I metabolize their pain killer a little too quick.  Just to get it to work they have to give me bonus pokes.  Any grinding past 45 minutes post shots and I'm jumping in the chair.  I had to get a few boosters just to make it through the last session and I still have 3 more visits to do.  Good god,  pain wise it's worse than the chemo and radiation.  Now I remember why it's been the better part of 25 years since I have visited a dentist.

LOL@darcher

LOL.....you have such a humorous way of putting things. I always laugh out loud. I know the trials your going through are hard but keep up the humor. It helps me if not you.  haha

Mikenh

We got less snow than

We got less snow than expected and it's sunny outside right now and upper 20s so pretty nice for this time of the year. My son shoveled and I cleared the car but I need to do the other car. I used the ski mask and it was great for protection over the upper face and the eyes. I also picked up two Celestron Elements hand warmers. These were 2 for $30 at Costco (they're $34 each at Amazon) and they fit into your hand and put out two hours of heat around 114 degrees. So good for a fast warmup inside or in the car after spending time outside. They charge via Mini-USB. There are some better models out there but I'm happy to be able to have picked these up at Costco. I added another model by EnergyFlux to my cart which has a higher capacity and also allows you to charge mobile devices and includes a flashlight. I may get one of those as a spare to leave at the office.

What is nice about these is that my hands feel numb even after being inside for ten minutes. Applying heat directly to the skin gets rid of the numbness and pain really fast.

So I have a little more shovelling and clearing to do and I need to work on the roof as well and hopefully these products make it a lot more comfortable. I need to dig out my English Scarf next.

Mikenh

I put on a Convatec Natura

I put on a Convatec Natura Convex wafer this morning after spending a lot of time looking for videos on how to apply it. Convatec has their moldable products in their video library but I couldn't find anything for the Convex so I went from memory as best I could (the WOC nurse put one on and it worked great). I had some stinging from leakage with my last bag change and there was a little after changing the bag but I hope that's just due to pressure.

I did the crusting thing and I hope that it works. I did two layers: powder, Cavilon spray, powder, Cavilon spray. I had trouble keeping the bag on the wafer as I'm not used to installing it while it is on my. I usually mount the bag on the wafer before starting. This time, it came off a few times before I put enough pressure to get it all secure - at least I hope that it's secure now. I watched a video on convexity where it covered a wide variety of products and the main idea is to get the wafer under the stoma output hole so that it doesn't get on the skin. I'm hoping that the crusting protects the skin and helps it heal while the convex wafer keeps the enzymes away.

I have a bunch of Coloplat Mios which I haven't tried yet either. And I have an order in for 20 Convatec Natura Convex so I better like them for a while. They have to verify with my surgeon (I guess approval is required by the insurance company). I would like for things to clear before the new year so that it falls into this year's insurance bucket but that's up to how fast the surgeon's admin folks are. So I'm getting used to the cold sensitivity. No, I don't really like it but I'm working as fast as I can to adapt to the new and cold normal.

I imagine that everyone else does the same thing. I think that flexibility and adaptability really help to reduce pain in this journey.

Mikenh

 

 

I got my 12/20 CEA report and it was 1.4. So 2.7, 1.9, 1.8, 0.6, and 1.4. The 2.7 was after diagnosis. 1.9 1/2 way through Neo-Adjuvant. 1.8 after Neo-Adjuvant. 0.6 after surgery. 1.4 the day of Adjuvant start. The 0.6 was at Dana Farber and the rest at my local hospital. Local hospital normal range is <= 3.8. Dana Farber normal range is <= 2.5. If we go by ratios, then Dana Farber is 0.24 while the local hospital is 0.37. But we don't know if the values in the scale are strictly linear. So somewhat of a minor worry. But the remaining tests should be at the local hospital so I should get some consistency over time.

abita

Mikenh said:

 

 

I got my 12/20 CEA report and it was 1.4. So 2.7, 1.9, 1.8, 0.6, and 1.4. The 2.7 was after diagnosis. 1.9 1/2 way through Neo-Adjuvant. 1.8 after Neo-Adjuvant. 0.6 after surgery. 1.4 the day of Adjuvant start. The 0.6 was at Dana Farber and the rest at my local hospital. Local hospital normal range is <= 3.8. Dana Farber normal range is <= 2.5. If we go by ratios, then Dana Farber is 0.24 while the local hospital is 0.37. But we don't know if the values in the scale are strictly linear. So somewhat of a minor worry. But the remaining tests should be at the local hospital so I should get some consistency over time.

Can you dumb that down for me

Can you dumb that down for me? I don't understand why the levels went up after your surgery, which I think must have been the tumor being removed. My numbers went up after my surgery, down after my first infusion. The reason though that mine went up after surgery though was that I still have lesions on my liver that we are trying to shrink enough to remove.

Trubrit

Just like a yo yo

My Oncologist would not order a CEA during treatment, as he said that chemo messed with the body and you don't get accurate results. 

Tru

Mikenh

abita said:

Can you dumb that down for me

Can you dumb that down for me? I don't understand why the levels went up after your surgery, which I think must have been the tumor being removed. My numbers went up after my surgery, down after my first infusion. The reason though that mine went up after surgery though was that I still have lesions on my liver that we are trying to shrink enough to remove.

THey went down to 0.6 after

THey went down to 0.6 after surgery but that was the different lab. Before surgery was 1.8, after was 1.4 from the same lab.

Tunadog

Mine has been reliable

Whenever my oncologist sees me or get infused blood is drawn and CEA results are reported. That’ 2 or 3 times a month. It is currently 3.2.

Before surgery- 13.8 after 2.7. It stayed about 2.7 through the Oxi and Xeloda for 6 months.

I was NED for awhile and then had a recurance and my CEA was up to 9.8.

I’ve been on Xeloda and Avastin for 6 or 7 months and my CEA continues to drop and is down to 3.2 now.

It has been a good indicator for me 

Mikenh

Very busy day doing laundry,

Very busy day doing laundry, returning a package for my wife, taking care of backlogged paperwork and buying that balaclava. I went to a local ski shop and a young salesperson asked me what I was looking for and I described it and he pointed me to Neoprene products as I wasn’t going to be using it under a helmet. It can be nice to get local service when you need it from someone that knows the products.

Mikenh

CapeOx costs:

CapeOx costs:

Billed amount: $11,745.20

Discount: $10,685.20

Insurance paid: $1,060.

My costs: $0

I'm sure that this will change in 2018 as my max out of pocket was $2,000 and it might go up this year (I didn't check). I'm sure that I'll hit max out-of-pocket with these kinds of charges along with monitoring costs later on (I hope).

Mikenh

It was quite brisk this

It was quite brisk this morning. I had cold sensitivity in my feet and fingers but that's normal. The rest of me was fine. Temp is -1, wind chill -17. It gets colder the next couple of days and I think that it remains cold for a while. No major snow fortunately.

Mikenh

I felt incredibly tired

I felt incredibly tired yesterday and am not sure as to why. It could have been the workouts a few days ago, a cold, or not getting much sleep the previous evening but I think that I slept about 10 hours last night. I feel somewhat better but I think a big reason is the intense cold outside and being somewhat couped up inside. It doesn't help that the gym is closed today and I think that it was only open abbreviated hours yesterday. Tomorrow is the last Xeloda day in this cycle and then I get the week off. We have the cold weather for at least the next ten days though we do make it up into the 20s for a few days later this week. I have a few errands outside to take care of today so braving the bitter cold again. So Cycle 1 is almost in the books.

BRHMichigan

Congrats on progress!

Great to see your picture above, Mike.  You seem to be enduring the chemo very successfully so far. Not too many side effects so far.  Although I have chosen to put it off for now,  I appreciate you sharing your experience (as many other do too). -- Beth

Mikenh

BRHMichigan said:

Congrats on progress!

Great to see your picture above, Mike.  You seem to be enduring the chemo very successfully so far. Not too many side effects so far.  Although I have chosen to put it off for now,  I appreciate you sharing your experience (as many other do too). -- Beth

I would say that the

I would say that the Oxaliplatin is tough but that may be due to the cold weather. I've made some adaptations with technology. One difference between the Xeloda and 5FU schedules is that there's more time to recover from it though the intensity may be higher. I've seen many reports that the Oxaliplatin symptoms last 3-5 days where they were 7 days for me and I'm wondering if that's because there are 8 cycles instead of 12 so they make the amount higher for the CapeOx regimen.

At the moment, I actually feel mostly normal, except for the bag. I've lost strength but I know that I can get it back in 3-6 months though I won't start in earnest until the bag is gone. If the rest of the cycles are like the first, then it's definitely manageable. I think that they will get progressively more difficult though. My biggest struggle right now is in avoiding weight gain.

abita

Mikenh said:

I would say that the

I would say that the Oxaliplatin is tough but that may be due to the cold weather. I've made some adaptations with technology. One difference between the Xeloda and 5FU schedules is that there's more time to recover from it though the intensity may be higher. I've seen many reports that the Oxaliplatin symptoms last 3-5 days where they were 7 days for me and I'm wondering if that's because there are 8 cycles instead of 12 so they make the amount higher for the CapeOx regimen.

At the moment, I actually feel mostly normal, except for the bag. I've lost strength but I know that I can get it back in 3-6 months though I won't start in earnest until the bag is gone. If the rest of the cycles are like the first, then it's definitely manageable. I think that they will get progressively more difficult though. My biggest struggle right now is in avoiding weight gain.

They get worse. My first had

They get worse. My first had bbarely any symptoms. My bad cold effects last about 6 days. Today I went out to the alley laundry room. No cold issues until I took the wet,cold laundry out.

abita

Mikenh said:

I would say that the

I would say that the Oxaliplatin is tough but that may be due to the cold weather. I've made some adaptations with technology. One difference between the Xeloda and 5FU schedules is that there's more time to recover from it though the intensity may be higher. I've seen many reports that the Oxaliplatin symptoms last 3-5 days where they were 7 days for me and I'm wondering if that's because there are 8 cycles instead of 12 so they make the amount higher for the CapeOx regimen.

At the moment, I actually feel mostly normal, except for the bag. I've lost strength but I know that I can get it back in 3-6 months though I won't start in earnest until the bag is gone. If the rest of the cycles are like the first, then it's definitely manageable. I think that they will get progressively more difficult though. My biggest struggle right now is in avoiding weight gain.

Oh, and I am on 12 rounds as

Oh, and I am on 12 rounds as mine spread to liver