Mikenh and Surgery

Mikenh

NewHere said:

I Think There Are Papers (Or Variations Of Those) On Both

At least the first part.  My oncologist told me about that when my initial test came back in 2015 and that certain drugs are not available.  I know they referred to some studies.  I am not sure if there are all encompassing papers on each variation and mutation in one source.  There are some sources on the web that discuss them.  I think the one you posted is one of the better ones.    

Genomic Tumor Testing should be a matter of course for each patient, though I know it is not.  Costs, facilities etc all stand in the way.  But it would seem to make greater breakthroughs and have a greater database it makes sense.  Paticularly at start of treatment and also see what happens during treatment.

Check out the NIH studies going on for colon cancer and those that are completed.  Some of the detail is extreme.  "Left handed people born in April who like the color orange and the effect of inhibitor of XYZ when administered on Thursdays" Well kind of

I have seen several papers

I have seen several papers covering the higher incidence types but haven't run into one with a survey of all of them. The individual information, of course, is all out there but I don't believe that it's all there in one paper. As you said, MGH has a nice clickable database where you can get all of the information but you can't really carry it around with you, say, on your phone. But I'll think about it. Writing a research paper is a fair amount of work but I consider it fun as well. I'm going back to work full-time next week and will have to weigh my time commitments going forward.

Right now, it looks like doctors order point tests for drugs. So if you don't have X, then you can take this drug or course of treatment. Each of those tests has a monetary cost, a time cost and a cost in biopsy tissue. We now have NextGen sequencing which can do all of the testing in one shot so that the doctor can know what you do have and what you don't have. It's likely that the NextGen testing costs a lot more than the individual tests ($1,000 I think) but it would only be one time as opposed to potentially multiple times.

As you said, a lot of information would be added to hospital databases. If you had a major research hospital that did Genomic Tumor Testing for every cancer patient, then you could get accurate statistics on mutation and variant and you'd also have age and a lot of other statistics that researchers could slice and dice to determine how effective treatments are, or if there are subpopulations that see more side-effects from treatments, and many other things. If you did point tests for some patients, then you wouldn't have that data or it would be incomplete.

 

 

NewHere

Mikenh said:

I have seen several papers

I have seen several papers covering the higher incidence types but haven't run into one with a survey of all of them. The individual information, of course, is all out there but I don't believe that it's all there in one paper. As you said, MGH has a nice clickable database where you can get all of the information but you can't really carry it around with you, say, on your phone. But I'll think about it. Writing a research paper is a fair amount of work but I consider it fun as well. I'm going back to work full-time next week and will have to weigh my time commitments going forward.

Right now, it looks like doctors order point tests for drugs. So if you don't have X, then you can take this drug or course of treatment. Each of those tests has a monetary cost, a time cost and a cost in biopsy tissue. We now have NextGen sequencing which can do all of the testing in one shot so that the doctor can know what you do have and what you don't have. It's likely that the NextGen testing costs a lot more than the individual tests ($1,000 I think) but it would only be one time as opposed to potentially multiple times.

As you said, a lot of information would be added to hospital databases. If you had a major research hospital that did Genomic Tumor Testing for every cancer patient, then you could get accurate statistics on mutation and variant and you'd also have age and a lot of other statistics that researchers could slice and dice to determine how effective treatments are, or if there are subpopulations that see more side-effects from treatments, and many other things. If you did point tests for some patients, then you wouldn't have that data or it would be incomplete.

 

 

Which Place Do You Recommend?

Going to contact http://www.nextgenlabs.com/ and look for locations.

 

You should do a paper like you said.  Sounds like it is right up your alley and passion, which is a great start.  (I am a strong believer in people pursuing things that they are passionate about.)

Mikenh

NewHere said:

Which Place Do You Recommend?

Going to contact http://www.nextgenlabs.com/ and look for locations.

 

You should do a paper like you said.  Sounds like it is right up your alley and passion, which is a great start.  (I am a strong believer in people pursuing things that they are passionate about.)

I had mine done at Mass

I had mine done at Mass General Hospital in Boston and my coworker had his done at Dana Farber in Boston. I would pick a place that's not too far from the hospital where the biopsy is as I think that it gets driven over in refrigerated transport. I suppose that it could be flown if it were refrigerated at each transport step. But someplace relatively local would seem to be a better choice.

Mikenh

What happens to the bag if

What happens to the bag if you take a shower without putting on the vent tape? I just did this and I'd like to keep using the bag for another two days.

Cindy225

What Happens

Mike - I never put any tape over it and nothing happened...

You ate cashews?!  Wow!  Reco getting almond and cashew butter.  Good eating protein as accelerates the wound healing process.

I didn't drive for at least 3 weeks.  Issue for me was backing up and being able to twist my body to see behind me. Ouch! 

Original name for my stoma; "baby stoma".  Lizzard great name Stella!

Cindy

 

Mikenh

Cindy225 said:

What Happens

Mike - I never put any tape over it and nothing happened...

You ate cashews?!  Wow!  Reco getting almond and cashew butter.  Good eating protein as accelerates the wound healing process.

I didn't drive for at least 3 weeks.  Issue for me was backing up and being able to twist my body to see behind me. Ouch! 

Original name for my stoma; "baby stoma".  Lizzard great name Stella!

Cindy

 

Yup, will try butters once I

Yup, will try butters once I can get to Trader Joe’s. I drove 4 miles this afternoon. I was thinking of driving to the gym to use the treadmill as it is unpleasant walking outside. We have freezing temperatures and winds of 25 mph with gusts to 45. I need a full balacava and warmer gloves.

I just took another drive. No problems twisting to look behind me. These are just like driving 15 minutes one way - not long rides.

Mikenh

While I was at the gym, I had

While I was at the gym, I had a look for isolation weight machines for the upper body and selected Rows, Curls, Flys and the Chest Press. Just did a set of ten for each machine using very light settings (20-70% of normal). The benefit of a machine is that you don't have to do any lifting to set up the exercise and they isolate the effort to a fairly narrow area. There was no core involved in any of this stuff. There were a few other machines that I could have used as well but that was enough for an experiment.

darcher

airborne72 said:

Addiction versus Dependence

Darcher:

Some of what you just posted illicited a response from me.  This is not intended as a personal response to you, but rather to the subject.  I wrote, rewrote, and rewrote this statement several times to ensure that it is not personally offensive.  Bear with me.

I have been under the care of a pain management physician for almost 4 years.  During that time I have subscribed to all modalities of pain intervention with significant out-of-pocket cost, expenditure of time, and even pain associated with the treatments themselves.  For example, if you have never had an ESI (epidural steriod injection) then try one for fun.  I am also bound by a legal contract that I signed, stipulating my behavior, etc. in regards to lifestyle and prescriptions.  There are specific rules of conduct and consequences for violating those rules.

Being a patient whose pain is managed is more complex than what the major news reporting entities are portraying.  They are publicizing the sensational issues (yellow journalism) without sharing the full story.  Consequently, anytime the word opioid is mentioned the public is now conjuring a mental image of an indigent street bum who is strung out on oxycontin.  That is not correct.

What I am trying to convey in my post is the fact that pain management is a formal and highly regulated medical regimen designed to manage chronic pain.  The key word in that sentence is "manage" the pain - not the elimination of the pain.  I have never felt high or euphoric while taking opioid medications.  What I have felt is the control of pain to the extent that I have been enabled to continue to work publically and to contribute to society.  Now, as a direct result of the sensationalistic journalism, I am forced to endure even more hassle as a pain management patient.  That is the primary reason why I am sensitive to statements about opioids and addiction. 

There is a distinct difference between addiction and dependence.  Aversion to incorporate a pharmaceutical into medical intervention techniques because of misinformation is unfortunate.  Patients are suffering needlessly. 

Ok, that's all for now.  I just felt the need to express some of my frustration with this situation.

Jim

 

 

 

Airborne72 I agree that media

Airborne72 I agree that media can and more often than not does misrepresent the facts for headline value. What I wrote came directly from a doctor's mouth as best as I could remember. I say as best  becuse I was on morphine at the time and not exactly in my normal frame of mind given by how at one point I was on the phone with an attorney and my older brother which resulted in a shouting match over some petty details of a small real estate transaction.

I have two family members that got caught up in the oxicotin trap of increased dosage to now getting it on the streets. One is still addicted while the other beat it but it took a couple years. It's why I brought it up to the doctor in the first place when it was going to be prescribed. I ended up getting something else. I've seen first hand what it can do if it's misused or if the person is susceptible to its additive properties. As good as it might be at doing what it does it still strikes a nervous chord and could (I should have asked this)  have a genetic basis as to how easily a person can get addicted to it. Based on my family history the flags say stay away.    

coloCan

KRAS G12D:Mikenh: Have you seen this

cancerpreventionresearch.aacrjournals.org/content/early/2017/11/08/1940-6207.CAPR-17-0230

 

 

Mikenh

coloCan said:

KRAS G12D:Mikenh: Have you seen this

cancerpreventionresearch.aacrjournals.org/content/early/2017/11/08/1940-6207.CAPR-17-0230

 

 

I'll pass it to my son to

I'll pass it to my son to read. I read the first half of the abstract and felt in over my head. It does specifically mention my variant though.

coloCan

aacr.org is for researchers,scientists,not lay people

but its 8 journals,updated mon-fri,is worth the time spent,even tho most of what i read i don't really understand and what i do understand i tend to now forget by tomorrow. Like plosone.org;pnas.org;nature.com, its usually the origin of stuff found in nonscientific,popular sites like medicalnewstoday.com

Mikenh

I had to cough yesterday and

I had to cough yesterday and was prepared for the intense pain, and ..., I coughed, and there was no pain. And I thought that things down there must be getting better at a very good pace.

This morning I drove to the supoermarket with my wife and walked 1.33 miles in the store. We bought a couple of heavy items and some cans of stuff and I put them in the trunk or back seat and we brought them from the car into the house later on. Heaviest stuff that I carried into the house was 16 pounds. I also tried picking up a big laundry basket with clothes and that wasn't a problem. I think that the weight restrictions are somewhat arbitrary as how you pick something up and which muscles you use are more important than the amount of weight. Picking up a laundry basket is mostly the muscles in the back of your body, not your abs. Though the abs are used somewhat for stabilization. Picking up something from your side uses certain muscles as well (I need to check a diagram) along with torqueing the upper body against the lower body (as when you look behind you while driving).

So functionality is returning.

I received a notice from our Short-Term Disability company that my STD will be ending on Tuesday of next week. This is the date that I gave them for my visit to the surgeon. They sent me the notice last Wednesday and I was concerned at that time because I didn't know if I would be functional enough on Tuesday - that is I considered taking another week of STD. Then on Friday, I drove three times and got in a lot of walking and then even more yesterday. So I'm currently very confident that I can return to work on Wednesday of this week. But it really came together on Friday when several things improved. Things continue to improve with it getting easier to get in and out of the car, getting in and out of bed, and getting in and out of chairs.

On Tuesday, a friend is going to drop me off at the hospital. I'll drop off a tennis racquet for a nurse that wanted to play but couldn't afford a nice racquet, go to the surgeon's office to get the staples removed and ask questions and get the pathology report, then I have a meeting with the clinical trial person. To get home, I'll have to walk 3/4 mile to the train station, take the train in to Boston, switch lines to take the train out to my mother's house, and then walk 3/4 mile to her house, pick up my car and then drive home which will likely take about 70 minutes. I have to be very careful with what I bring as I don't want to lug a lot of stuff around through all of that.

BRHMichigan

Amazing

Your recovery has been phenomenal.  I was pretty weak until week 4 after surgery.  Then at week 5 I felt like myself again.  It's so good to deel human again.  I have been lifting my 2 year old granddaughter again....carefully.  We don't want hernias after all this!

Love the tennis racquet gift.  Very kind of you.

tanstaafl

ps

Our surgeons use celebrex for CRC and post surgical pain.  We ourselves use clot preventative supplements alongside everything else.

Mikenh

Stoma leaked while I was

Stoma leaked while I was sleeping. Fortunately I instantly woke up and asked my wife for a towel before any got on the bed. She peeled off my socks and I made it into the bathtub and peeled off the rest of my clothes. Her hands had lotion on them so I got the kids to help me with the stoma change and I think that it took about 45 mintes from start to finish. I was planning on changing the bag tomorrow morning anyways so doing it now was okay though I prefer to better plan for these things. The main difference this time was that I used water to clean myself up instead of towels. I'm also much better able to stand for long periods of time than before. I just followed the directions on my phone and it was okay. It definitely helps to have a lot of help. I have no idea as to how messy this could get if I had to change a bag in a public restroom but I think that I need to carry supplies with me when I go out, eithier in my duffel or backpack.

The reasons for the leak:

- I should have emptied the bag before I went to bed but I was just going to take a nap, wake up and then change the bag and then go to sleep.

- Large dinner. I should take smaller meals with time in-between to let stuff go into the bag and then empty it.

- I took a shower without using the vent seal which makes the vent inoperable. This allowed the buildup of gas in the bag which caused the leak.

- I slept on a bed that was horizontal. I had been sleeping on a bed with the head elevated so the stuff probably flowed back towards the top of the bag. I think that it would have leaked anyways but it might have been only gas if I were elevated.

So a bunch of relatively small things that I need to do better at.

This time we used water instead of toilet paper and towels and it definitely felt less wasteful though my daughter was doing bucket duty and it might have worn her out.

That's your entertainment for the evening. Going to get some rest now.

Mikenh

I got the box of stoma

I got the box of stoma supplies and it's the wrong stuff. Major - bit-time disappointment. I asked the VNA nurse to just order what I already had and I got a box of XL one-piece pouches with tabs and things on the bottom. I don't know how these are used and the flange would be way too big for my ileostomy. I have the feeling that these are for a colostomy. There were no barrier wipes nor any paste either. I called the supply company and ordered the correct pouches and paste. I should have enough barrier wipes for a while though I may order some of those as well. She gave me directions on returning the old stuff. I left a message with the VNA person. I don't think that she understands the WOC stuff as they have separate nurses for that. Just one more headache in trying to get my supplies on time.

The person on the phone said that insurance will cover it but I do need to return the old stuff. I told her that I'd pay out of pocket. The supplier does need a note from my doctor that they are necessary products. So I guess I'm with Jim in worrying about this stuff. There is a medical supply place in town and I will drive over and just buy the stuff from them if I run out of supplies. The VNA folks are supposed to make things easier. So I now need to wait twice as long to get my correct order and I need to go to the post office and ship this thing back with a tracking number and I need to make a copy of the packing slip.

There are a lot of moving parts in all of this stuff and I really need to stay on top of things to prevent screwups impacting smooth operations, well as smooth as they can be.

Tunadog

Sounds like Coloplast Sensi-Mira Colostomy bags I use

I tried a few before I found the best for me. The manufacturer will send you differs samples, you decide, all free.

I also had an Ostomy Nurse come over to my house about a half dozen times.

Best of Luck with your stoma, I'm sure you'll do fine.

Mikenh

Tunadog said:

Sounds like Coloplast Sensi-Mira Colostomy bags I use

I tried a few before I found the best for me. The manufacturer will send you differs samples, you decide, all free.

I also had an Ostomy Nurse come over to my house about a half dozen times.

Best of Luck with your stoma, I'm sure you'll do fine.

I believe that the bags they

I believe that the bags they sent me were colostomy bags, not ileostomy bags as I can't see any other reason why the flangs would be so large. It's a lot of effort for me getting things right and trying to stay ahead of things that I need to do to avoid problems. Sending the wrong type of bag compared to what I requested doesn't help.

An ostomy nurse wouldn't make this mistake. I expected the VNA folks would know better but apparently not.

BRHMichigan

Ugh Ostomy stuff

The excellent nurses at the hospital cautioned me that most home care nurses know just very basics about stoma care.  I nearly ran out of supplies, had to place the order myself, never had any real help changing the bags after I came home.

I love Coloplast products, but have trouble with pancaking.  Have had a couple accidents all at home thankfully.  I go into the office tomorrow and will bring at least 3 extra bags.  Paper towels are excellent for cleanup.  I also think disposable bags are cleaner overall.  Insurance covers 2 per day.

All in all, my experience has been positive.  I am thankful for this because mine is permanent.

I am also going to buy extra boxes out of pocket.  Never ever wanna run out.

Mike, your family sounds amazing to assist you like that.  What a blessing!

airborne72

Ostomy Supplies

From what I have determined, there is a set amount of ostomy materials authorized by Medicare, and that makes sense to me.  Overtime and with numerous individuals living with otomies, their experience and data has eventually been compiled.  Consequently, the normal consumption rate has been determined.

However, the resupply process is the weak link.  Place the order, wait for it to be filled in accordance with the Medicare guidance, and then hope the mail delivery system does not get delayed (weather or labor issues).  I have little control over this phase of the process and I don't like it.  My solution was to identify a medical supply store locally and to ensure that they could provide what I need immediately.

I almost had a significant leak on Saturday right before making a one hour ride to visit with our granddaughter.  I discarded one of my "few" remaining wafers and applied another one, all the while thinking about the consequences of running out of supplies.  But the more significant issue was my psychological state - I wanted to just stay at the house and be a hermit.  That's when I realized that I was letting a silly piece of plastic control my life.  I counseled myself and then made the trip without incident.  Seeing my 10 week old granddaughter was absolutely worth the effort.

It's funny how things take on different value through life.  Two months ago I had no idea what a two piece ileostomy pouching system was; now I am hoarding them.

Jim