Mikenh and Surgery
Comments
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FYI - For my reversal both the surgeon and oncologist wanted to wait a month for the chemo to be out of my system. Although disappointing at the time that's what I did. My surgeon also took my port out during the surgery. I am very glad that I did the reversal but still figuring out the new normal... challenges with diet issues and urgency.
Cindy
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I learned a lot more about
I learned a lot more about that KRAS G19D case last night. It turns out that the woman that went through it is on another of my forums and she has a blog and described the whole process. She had KRAS G12D and 7 Mets in the lungs. She had this therapy called TIL (very long thread on it and others are trying it out now) but it worked on her because she has what are called Helper Alleles. Normally immunotherapy doesn't work on KRAS, NRAS and HRAS because they are mutations inside the cell but these Helper Alleles spot problems inside the cell and then announce them on the cell surface. So an immune system response will attack the tumor cells if it knows how to. There are a bunch of alleles (100+) and each person has a couple of them. So if you have the right allele and the right mutation, then this process can work. It would seem to me that this is a natural target for Genomic Tumor Testing as NextGen testing would have the mutation and the Allele information. So if a tumor had both of these, then the testing should recommend this therapy. Hopefully we will catalog all of the Alleles to see which can be used for which cancer in the future.
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I had a look at the ostomy
I had a look at the ostomy forums and it’s like they speak another language over there. I trie to post a question but I think that there’s a waiting period for the first post. It’s hard to get a feel on products for ostomy stuff in general.
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I was in bed taking a short
I was in bed taking a short snooze when my wife called me to go shopping and I sat up straight as I was startled. I have not done this since surgery - I had been rolling to my left side and then pushing with my left hand or elbow to get vertical and then got on the floor to stand up as I had been afraid to sit straight up. I didn't feel that any damage was done so I guess that things are getting better down there. I plan to continue rolling to the left to get out of bed but I have a tiny bit more confidence that my physical capabilities are improving; even if only much slower than I'd wish.
Tomorrow is Dana Farber day. My appointments run 3:30 to 5:15. I've decided to take the commuter rail in and out. If you've ever tried to get out of Boston at 5:30 PM during the week, you'd understand why I'm taking public transportation. I think that it would be two hours in traffic trying to get home. It will still take me a while taking two trains but at least I can sleep, or relax on the trains.
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Regarding questions for the oncologist:
Nausea meds will be given (I might skip them the first time)
The meeting with the surgeon in January is probably just to check on things - the Oncologist said that they wouldn't do a reversal in the middle of chemo.
Dentist during chemo is not recommended. I will see if I can get an appointment before we start.
He was quite impressed with my tennis during chemo/radiation video. He noted that I was moving my feet too so he knew what to look for in terms of exertion.
He doesn't think much of IV Vitamin C. I thought about giving him my research paper printouts but decided not to.
I asked about Immunotherapy and we discussed Keytruda and the percentage of people that it truly helps seems to be fairly small.
He said that it was his busiest day today - he saw 27 patients and we finished around 5:45 PM. He said that there are more and more patients to see. I don't know if that means that more people are getting CRC or that more are going to Dana Farber.
And the last thing was that there was a young lady that was called to go in to the are where they take vitals. Everyone looked at her while she was going in. Mainly because most of the patients were in their 40s - 80s and I think that people aren't comfortable with the idea of young people getting cancer.
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I bought a package of these a
I bought a package of these a while ago and they're handy when you need a quick fix-it solution for tying things down or to make a stand for a tablet or other crazy things:
The big ones are 18 inches long. I was thinking of making a hanger support for the bag that tucks into the waist of my jeans. I'll try it at home tonight to see if it's a usable idea.
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I've been looking for a way
I've been looking for a way to redo the template accurately and last week I solved this by taking a picture of it and comparing it to my original template and shunk it down but not close to enough. My wife disagreed with my assessment so I compromised. I'm happy that I made it smaller but would like to get even more accurate so that I can expose less skin to potential irritation. A smaller hole will also mean more adhesive against my skin so it should provide a stronger attachment.
I put a ruler next to the stoma for the picture. So right now I've printed out a cut segment from the picture and am doing the resize and print thing so that the ruler in the picture matches a standard ruler. And when it does, I can use it as a new templace. We'll see how it works when I change the bag tomorrow. What I'd love is an App to do this automatically.
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Found a forum thread with aMikenh said:I've been looking for a way
I've been looking for a way to redo the template accurately and last week I solved this by taking a picture of it and comparing it to my original template and shunk it down but not close to enough. My wife disagreed with my assessment so I compromised. I'm happy that I made it smaller but would like to get even more accurate so that I can expose less skin to potential irritation. A smaller hole will also mean more adhesive against my skin so it should provide a stronger attachment.
I put a ruler next to the stoma for the picture. So right now I've printed out a cut segment from the picture and am doing the resize and print thing so that the ruler in the picture matches a standard ruler. And when it does, I can use it as a new templace. We'll see how it works when I change the bag tomorrow. What I'd love is an App to do this automatically.
Found a forum thread with a ton of information on stoma skin seals and margin. The recommendation is 1/8 inch around the stoma with a number of suggestions for barriers.
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I finally got around to
I finally got around to reading up on HLA (Human Leukocyte Antigen) looking for frequencies. What I found was somewhat astonishing as these things have an effect on a variety of diseases. My understanding is that humans get six of them and that they help to prevent diseases and conditions. So some understanding of immunology is required. I asked my son if he knew where Campbell's Biology was and he said that he didn't know where it was but he said that he didn't think that it would help me understand the immunology stuff. I told him I need it for a base and he said that he forgot that I didn't have his biology background. So I had a look at what it would take to get a BS in Biology and an MS in Cancer Biology and it would be a considerable amount of work. I just want to understand a really tiny piece of all that - not sure that it's possible to learn just enough to understand how things work. At any rate, I found the Campbell's and books on chemistry, biochemistry, and genetics. So I can see how far I can get with reading without spending any $$$.
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liver surgeryTrubrit said:Hitting the LIKE button
Jim is so right.
I bet many of us can attest to overdoing it after surgery.
After my liver surgery I was starting to feel pretty good. About a week out of hospital, I asked the nurse if I could start my regualr walks. She practically shouted down the phone 'Lady, you've just had liver surgery. NO!'
Well, I felt pretty good, and I wanted to walk my normal five miles. I ended up having to picture/visualize my liver. I had to picture the surgery and what they did INSIDE of me, before I could understad why I was being told what I couldn't do.
As Jim said; allot went on underneath that abdominal incicion. Don't push it! Bits of you were stitched together. Don't undo it by doing too much.
But you are definitely on the right track. Keep up the good work but be patient and be good to yourself.
There endeth my rant. I will now climb down from my soap box and leave you be.
Tru
Hey Tru, Did you have your liver surgery after you finished 4 infusions? I have known from the beginning that I will have that. I had my sigmoid colon and tumor removed 6 weeks, and am still recovering. My second infusion is Monday. All of a sudden, this week, I have started thinking and worrying about my liver surgery in January. My oncologist said it is easier recovery than the bowel surgery. I don't know, worried my lesions won't shrink enough to remove, worried about surgery itself, recovery, etc. I am generally positive, but I have moments where I break down a little.
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InterestingMikenh said:I finally got around to
I finally got around to reading up on HLA (Human Leukocyte Antigen) looking for frequencies. What I found was somewhat astonishing as these things have an effect on a variety of diseases. My understanding is that humans get six of them and that they help to prevent diseases and conditions. So some understanding of immunology is required. I asked my son if he knew where Campbell's Biology was and he said that he didn't know where it was but he said that he didn't think that it would help me understand the immunology stuff. I told him I need it for a base and he said that he forgot that I didn't have his biology background. So I had a look at what it would take to get a BS in Biology and an MS in Cancer Biology and it would be a considerable amount of work. I just want to understand a really tiny piece of all that - not sure that it's possible to learn just enough to understand how things work. At any rate, I found the Campbell's and books on chemistry, biochemistry, and genetics. So I can see how far I can get with reading without spending any $$$.
You are ambitious and motivated. It is sad when knowledge has to come at a high price. I wonder how many of us would be proficient in many fields if schooling were free.
Have you heard of the book
The Emperor of All Maladies: A Biography of Cancer by Siddhartha Mukherjee
Its a tome, for sure; but interesting. I have not finished the book, but read it peacemeal. Look at some of his other works as well.
I admire your desire to learn and share. Thank you!
Tru
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Last night was an experiment
Last night was an experiment as I had leakage on the other side of the stoma from pooling around the bag and it came out the rear end. So I slept on a recliner which kept the lower end of the bag below the stoma so that it wouldn't pool around the stoma and it worked, at least from that perspective. I got over 8 hours of sleep and more than five were deep sleep but I didn't feel as comfortable when I got up to change the bag (four times). Some of that could have been that it was quite cold last night and the heater was on a lot and I felt the effects of a dry environment. I may have to get a humidifier running.
Edit: changed the bag in 12 minutes this morning and there was no irritation. Irritation is when it stings when I apply the barrier wipes and there was none this morning. The area looks better too. So changing at five days was definitely too long. Two days works out. I'm going to try three days for the next change and I'll just stick with three if it works out. I think that I've started feeling the irritation on the fourth day in the past.
The change was fast because I had to take my wife to an appointment so I had limited time but the stoma was very cooperative. It did not erupt once. That's never happened to me before.
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DentistMikenh said:Dates:
Dates:
Monday, Dec 11, Dentist Cleaning
Friday, Dec 15, Chest Port installed
Tuesday, Dec 19, Chemoteach
Wednesday, Dec 20, Meet with my regular oncologist (he's on vacation this week), start first infusion
Definitely get the dental work done before chemo. My dentist wouldn't touch me at all, when I was in treatment.
Will think of you on the 15th. The port is a wonderful thing.
And it looks like chemo is one of your Christmas gifts this year.
Tru
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Busy Month
Good luck with all your prep, Mike. Will think of you on Dec 20th. I have a 3 month suveillance appointment with my oncologist on that day.
Love/hate relationship with my port. My IR surgeon called my port the Ferrari of ports because of its low profile technology. It still stuck out due to my frame and was uncomfortable. Though it is the best way to deliver the chemo ...
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Visiting the dentist too.
I got the green light to go from the docs who told me get done what you can now. Funny thing is I'm more afraid of the dentist than I am the cancer center. That drill just gives me the chills and I lock up like a vice. In my case there is going to be a good amount of drilling since it's been ages since I've gone. I took the same approach to dentists as I did doctors. If I don't hurt I don't go. It hurts now so no option unless I want a new nickname, gummy. I also found out my chemo doesn't start til Jan 16 which is way out there. I don't know why I thought it was sooner but that's the official date.
Depending on what they find tomorrow I may have to do chemo and some dental work together. A month may not be enough since I'm going to shoot for a couple implants. I handled the Xeloda ok last time so a sore jaw probably won't interfere too much as long as it's early on. Thank God for sedation dentistry. It's the only way I'd do this.
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I've had almost all of mydarcher said:Visiting the dentist too.
I got the green light to go from the docs who told me get done what you can now. Funny thing is I'm more afraid of the dentist than I am the cancer center. That drill just gives me the chills and I lock up like a vice. In my case there is going to be a good amount of drilling since it's been ages since I've gone. I took the same approach to dentists as I did doctors. If I don't hurt I don't go. It hurts now so no option unless I want a new nickname, gummy. I also found out my chemo doesn't start til Jan 16 which is way out there. I don't know why I thought it was sooner but that's the official date.
Depending on what they find tomorrow I may have to do chemo and some dental work together. A month may not be enough since I'm going to shoot for a couple implants. I handled the Xeloda ok last time so a sore jaw probably won't interfere too much as long as it's early on. Thank God for sedation dentistry. It's the only way I'd do this.
I've had almost all of my Amalgam fillings replaced with porcelain crowns or onlays and have had far fewer fillings since then. The artificial stuff is quite good in performance. I skip the sedation for fillings. I also have two root canals and I tried to get the first one without anesthetic. That didn't work well. If you have the level of pain of a root canal, then you really need to get that fixed soon as it's basically an infection.
The oncologist said that it should start in a 6-8 week window and I'm starting the 7th week because of scheduling. I think that scheduling is challenging this time of the year because a lot of people are using up insurance benefits before the new year so I guess that there may be elective surgery and other procedures. I would have liked to get the port done sooner but the OR appears backed up until late next week.
Are you doing Oxaliplatin as well or only Xeloda? The Xeloda dosage for me will be 20% higher and it will be 14 on, 7 off instead of 5 on and 2 off.
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I got into Brigham and Women
I got into Brigham and Women's Hospital at 5:30 this morning. It was a quick trip with no traffic. So hitting the border by 4:30 AM means no traffic into Boston. 5:00 AM used to work but I don't think that's true anymore. I'm working from the coffee shop until my appointment and then will head to the office afterwards. I don't think that it should be that bad going against the traffic.
We went grocery shopping last night and there were six grocery bags (plastic) and a thing of cans. I picked up the six grocery bags and my son picked up the thing of cans and we went in. I imagine the groceries that I carried weighed about 25 pounds but I didn't have any problems with it. So capabiiities continue to improve though slowly. Oftentimes I feel like doing something and then pull back. Other times I go to do something and I just do it without thinking. I used to do an exercise called The Farmer's Walk. Take two 35-45 pound dumbbells and walk around the gym with them for two or more minutes. It simulates carrying in a lot of groceries. I'd guess that it hits a lot of muscle areas and is good for balance and probably posture.
The oncologist asked me what percentage of recovery I felt so far and I said 20%. I think that she was quite surprised by that low a number but that's how I really feel. My workouts are a very small fraction of what I used to do in the past. She emphasized that I'm young (I don't feel young) and healthy (which is objectively true but surgery takes a big toll). How are others going as far as recovery from surgery goes? I'm thinking that the six to eight weeks of waiting to start chemo is a good idea as the body really does need time to recover, particularly from open surgery.
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The visit to the Stoma Nurse
The visit to the Stoma Nurse went well this morning. The original appointment was for 10 days after discharge but it was moved out three weeks due to a conflict or something. I think that I would have been a lot better off if the original appointment date were kept. I think that the rationale would be that I've have a Visiting Nurse work with me including a visiting stoma nurse but I went back to work so quickly that there wasn't time for the latter (Visiting Nurses are basically cancelled when you return to work).
The Stoma nurse showed my the approach with the powder and the Cavilon spray and demonstrated the crusting mentioned in this thread yesterday or the day before. She also gave me a Convatec convex wafer this time and demonstrated that it's moldable even though it's not one of their "moldable" products. She also used the barrier paste (she asked me first) and she gave me a belt that works with Convatec products. I was looking at belts and wraps before and I wondered how they solved the problem of compression on the flange blocking flow and the belts do this by attaching to the outside of the flange using the hooks on the flange (I had wondered what those were for). So that approach would greatly improve bouncing around while running. It would be interesting to see how the wraps solve the problem. I think that using regular compression gear (I have Nike Pro Combat shirts and CW-X compression shorts and tights) might not work as well.
She had a list of samples that she would order for me and gave me the reference numbers for the things that we used today.
On Cavilon Spray vs wipes: insurance typically pays for wipes but not the spray. I'm inclined to order the spray as it looks to me like the convenience and comfort of the spray outweigh the cost to me. If anyone has an argument for the wipes, then I'm all ears.0
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