Mikenh and Surgery
Comments
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Things sure do change...Mikenh said:My Ileostomy supplies arrived
My Ileostomy supplies arrived! I now have 20 bags and wafers and two tubes of paste in addition to the five that I have left over from the hospital. If I can maintain five days per bag/wafer, then I should have enough supplies until my reversal (should be in two months and one week if nothing goes wrong) - at least that's what the Surgeon asked for. 25 bags should last 125 days. I'm probably going to order another set next month, though, in case the Oncologist's plans keep me on chemo to a different schedule than what the Surgeon is seeing.
That's one drop in anxiety level
It's really weird when a person gets excited about receiving some ostomy supplies, but I too know the feeling.
Jim
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I ran into the husband of a
I ran into the husband of a stage 4 CRC and she has KRAS G12V. I had thought that the KRAS family was fairly uniform in how dangerous it is but it appears that KRAS has a mutation that's associated with poor outcomes in G12V. It's quite the difficult case. There are so many mutations in KRAS (23 on the MGH page) that it would be hard to come up with targets for each, even if that were possible. The problem is inside the cell so you have to take a nuclear approach (attack all cells) as opposed to a targeted therapy. I think that it would be good to come up with better drugs for the worst of these, though, like BRAF and now G12V.
There is no clear association between activating KRAS mutations and poor prognosis in colorectal cancer. This may be attributed to allele-specific differences, as the KRAS G12V mutation has specifically been associated with worse survival. In addition, the presence of BRAF mutations significantly worsens the prognosis and clinical trials looking for the effect of KRAS on long-term outcomes should control for this factor.
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I walked a few miles on the
I walked a few miles on the treadmill with a sustained pace of 3.5 MPH. I tried running and the limiting factor right now is the stoma bag. It bounces up and down too hard and it caused some skin irritation. I don't think that I can practically run while I have this thing on unless I can find a design that's geared for running.
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I changed the bag this
I changed the bag this morning and there were a few, small red spots. I'd guess that it's irritation (the spots were just below the stoma. I was skimpy on the barrier paste in changing it last week and used more wipes and was more generous with it so hopefully things improve. The barrier paste stung when I put it on but I didn't feel anything applying more later on.
This morning I started loading my Pathology reports into web pages on my Mac. I would like to have them all available whem I want them but I think that a cloud format would be better. I might move everything to iCloud so that I can have it on my phone and PC and can look at things without an internet connection. I would like to do all of the lab results as well but formatting would be tough to figure out. I'm also working on the outline for one of the research papers that I talked about earlier. I want to keep the scope focused as there's a lot of leg-work for even the simplest of papers.
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I wound up moving my Cancer
I wound up moving my Cancer documents (Path and Lab Reports) into iCloud Notes as you can do hierarchies of documents and the documents are stored locally on all of my devices so that I can access information without a network connection. I will store research articles in iBooks as it can store PDFs and do hierarchies as well.
It seems that many of us, after surgery, are running into difficulties, as I have myself. They are basically obstacles in the way of living life and we either conquer them or live with them. But I think that it's important to savor the milestones (like having your port removed in the other thread). My milestone coming up is that I only have three more blood thinner injections to give myself. Believe me, counting down the days is sometimes the only way to get through it every day. It also feels like I'm running out of good places to do the injections.
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I had quite A challenge in
I had quite A challenge in the blood thinner needles also. Happy day when they were finished. I feel your pain.
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Cool. So someone else gotCanadian Sandy said:I had quite A challenge in
I had quite A challenge in the blood thinner needles also. Happy day when they were finished. I feel your pain.
Cool. So someone else got them too. I thought I was the only one here that had to do them.
It's so tempting just to skip the remaining ...
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It looks like I was wrong
It looks like I was wrong about Immunotherapy not being possible with KRAS as there's a research paper where it was used on a woman with good results. I didn't read enough to see whether or not this is going to be a product or going into clinical trials though. It specifically targets KRAS G12D.
http://www.nejm.org/doi/full/10.1056/NEJMoa1609279#t=article
I also read an article about Pancreatic Cancer. The five-year survival rate is under 3%. And the kinds of mutations possible are similar to Colorectal. That's pretty grim stuff.
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Big Bills
Those are awfully high and you're still going through more treatment. I haven't seen my actual costs but part of that could be that I'm in the same hospital that provides the insurance, KP. Still, the doctors etc probably get paid about the same so it's likely similar thus far. My responsibility is a bit higher at 7k but that's because I picked the cheap plan. I never thought I'd need it. I guess I was wrong. I wonder how this stacks up against all the other types of cancer cost wise. I wonder because if the 40% stats I've read are true then our insurance will have to climb quite a bit just to break even across the board.
A wife's church friend was diagnosed with pancreatic cancer about the same time I was. She went through some chemo initially but it was unresponsive. If I'm not mistaken it was 5FU. They're trying something else now that shows a lot of promise since what ever it is killed the biopsy sample. I think it's a clinical trial. She degraded quite a bit between June and a couple months back when they came over to our place. Seeing her it made me think I was very lucky to get what I got and to be as resiliant as I mostly am to the treatments and the disease itself. I still had and have bad days but nothing like what her condition is.
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A new state report issueddarcher said:Big Bills
Those are awfully high and you're still going through more treatment. I haven't seen my actual costs but part of that could be that I'm in the same hospital that provides the insurance, KP. Still, the doctors etc probably get paid about the same so it's likely similar thus far. My responsibility is a bit higher at 7k but that's because I picked the cheap plan. I never thought I'd need it. I guess I was wrong. I wonder how this stacks up against all the other types of cancer cost wise. I wonder because if the 40% stats I've read are true then our insurance will have to climb quite a bit just to break even across the board.
A wife's church friend was diagnosed with pancreatic cancer about the same time I was. She went through some chemo initially but it was unresponsive. If I'm not mistaken it was 5FU. They're trying something else now that shows a lot of promise since what ever it is killed the biopsy sample. I think it's a clinical trial. She degraded quite a bit between June and a couple months back when they came over to our place. Seeing her it made me think I was very lucky to get what I got and to be as resiliant as I mostly am to the treatments and the disease itself. I still had and have bad days but nothing like what her condition is.
A new state report issued last week has reconfirmed what few have contested: that Partners HealthCare is more expensive than the typical care provider in Massachusetts.
According to the CHIA, Partners received 33 percent of all commercial payments made to hospitals in the state in 2014, most notably at Massachusetts General Hospital (14 percent of all commercial payments) and Brigham and Women’s Hospital (11.4 percent of all commercial payments).
MA hospitals are probably already expensive as the cost of living here is already pretty high. I have not spent much time in the other cancer forums as I find that learning about just one type is a lot of work. I read a little here and there as the mutations for CRC are also in other cancers. I've read scary stuff about various CRC mutations and even the ones that aren't aggressive can kill you.
On a lighter note, I was in the office late and heard the unmistakeable sound of ping-pong balls. I sauntered over to the table and watched a match in progress. They asked me if I wanted to play and I just said that I'd hit a few balls. I hadn't hit a table-tennis ball in probably ten years and I had a great deal of difficulty adjusting to the supplied paddle (I have my own custom paddle in my office but didn't feel like fetching it). So I managed to hit for five minutes without causing myself any damage. But it was just using my arms and wrists - not really the proper way to hit but I was trying to avoid taking risks.
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I think most people have toMikenh said:Cool. So someone else got
Cool. So someone else got them too. I thought I was the only one here that had to do them.
It's so tempting just to skip the remaining ...
I think most people have to do it when they’ve had surgery for colon cancer. When the nurse first told me that’s what I had to do myself I said “i Can’t do that” she said yes I can and I will. lol I was so proud when I got it right.....after poking the wrong way for a bit. haha
Make sre you finish the job Mike. If I can do it you can to.
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The implications of thisMikenh said:It looks like I was wrong
It looks like I was wrong about Immunotherapy not being possible with KRAS as there's a research paper where it was used on a woman with good results. I didn't read enough to see whether or not this is going to be a product or going into clinical trials though. It specifically targets KRAS G12D.
http://www.nejm.org/doi/full/10.1056/NEJMoa1609279#t=article
I also read an article about Pancreatic Cancer. The five-year survival rate is under 3%. And the kinds of mutations possible are similar to Colorectal. That's pretty grim stuff.
The implications of this paper are considerable. Researchers used data mining approaches to find receptors for KRAS G12D, likely chosen because it's the most common of the KRAS mutations and 13% of all Colorectal Cancers. If they could come up with an immunotherapy drug for KRAS G12D, then they could likely do the same for the other KRAS mutations. And we wouldn't need the chemo/radiation/surgery/more chemo solutions that has been around for some time.
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What questions would you
What questions would you suggest to ask the oncologist for Adjuvant Chemo? My current list:
* 5-FU and Leucovorin or Capecitabine?
* Oxaliplatin?
* Irinotecan
* Folinic Acid (Vitamin B derivative)
* IV Vitamin C (paper)
* What is the cycle (days/weeks on/off)
* How many cycles?
* Nutritional counseling?
* Any problems doing reversal in the middle of chemotherapy?
* Immunotherapy for G12D in the future in case of recurrence? (paper)0 -
ViciousMikenh said:It looks like I was wrong
It looks like I was wrong about Immunotherapy not being possible with KRAS as there's a research paper where it was used on a woman with good results. I didn't read enough to see whether or not this is going to be a product or going into clinical trials though. It specifically targets KRAS G12D.
http://www.nejm.org/doi/full/10.1056/NEJMoa1609279#t=article
I also read an article about Pancreatic Cancer. The five-year survival rate is under 3%. And the kinds of mutations possible are similar to Colorectal. That's pretty grim stuff.
My mother died from pancreatic cancer. She was diagnosed the first week of June and died the middle of August (on her birthday). The ravages inflicted by that cancer and the rapidity of it are terrible.
Jim
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Mikenh said:
What questions would you
What questions would you suggest to ask the oncologist for Adjuvant Chemo? My current list:
* 5-FU and Leucovorin or Capecitabine?
* Oxaliplatin?
* Irinotecan
* Folinic Acid (Vitamin B derivative)
* IV Vitamin C (paper)
* What is the cycle (days/weeks on/off)
* How many cycles?
* Nutritional counseling?
* Any problems doing reversal in the middle of chemotherapy?
* Immunotherapy for G12D in the future in case of recurrence? (paper)This is a good list of questions. I would recommend you add a question regarding nausea and prescribed meds for it. The same for prescriptions that relate to increasing your appetite.
I am interested to see if your surgeon will conduct the reversal surgery while you are still active in chemo therapy. To be honest, I don't believe that I could sustain it.
It is my motivation to complete the chemo as best and quickly as possible so I can "get reversed." I looked at the calendar and counted the weeks/days until I complete my 12 weeks (6 cycles) of chemo. Then I circled 7 February as the first day when I think that I will be physically ready. I am already mentally ready.
Jim
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I'll ask about Tree Nuts butCindy225 said:Questions
Hi Mike - You've got a good list going! Might want to ask about vitamin D and tree nut recurrence impact. Will you be getting a port? Also, whether you should continue dental cleanings while on chemo.
Cindy
I'll ask about Tree Nuts but Vitamin D3 is already on my Medication list (probably the only thing left now) so he will know that I'm taking it. I'll ask about the port if it's more than Xeloda. And I added the dentist question.
thanks,
mike
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I'll ask about Nausea ifairborne72 said:This is a good list of questions. I would recommend you add a question regarding nausea and prescribed meds for it. The same for prescriptions that relate to increasing your appetite.
I am interested to see if your surgeon will conduct the reversal surgery while you are still active in chemo therapy. To be honest, I don't believe that I could sustain it.
It is my motivation to complete the chemo as best and quickly as possible so I can "get reversed." I looked at the calendar and counted the weeks/days until I complete my 12 weeks (6 cycles) of chemo. Then I circled 7 February as the first day when I think that I will be physically ready. I am already mentally ready.
Jim
I'll ask about Nausea if there are drugs besides Xeloda. I have never had a problem with being able to eat (actually the opposite problem due to activity) so I don't expect that here. I'll report back on the answer to the reversal in the middle of chemo. The surgeon wanted to do it end of January and I'm sure that the chemo will still be under way at that time.
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