dukenukem
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The needs and hopes and thoughts of caregivers and patients can be so different at times – know that we are here for both of you.
Duke
Did not go down that road. Even though the info on the trial said the James was supporting it, they had not approved it yet.
Duke
Aimee has a thing about driving over bridges, so I do most of that. Avoided an opportunity to go over the Driscoll Bridge on the Garden State Parkway. When I lived in Jersey that one scared even me. Lots of fast moving traffic and no place to hide or dodge if there was a problem Plus it was high, rose fast and seemed to drop even faster. Truckers called it “The bridge over the top of the world.”
Duke
I’ve been told that surgery is not an option because of the distant metastases and the size of my liver tumor (it started about 18 cm but never got below 10 cm). Plus I was told no doctor would prescribe surgery for me because it was too risky and might actually spread things faster by perturbing my system.
My onc is out of options when the FOLFOX6 no longer works. She referred me to another onc in a different hospital system who has different ideas. Still does not seem aggressive about going into treatment areas he is not familiar with, but at least has some other treatments in mind plus a clinical trial his system is conducting. I will get more details when needed.
I’m surprised MDA won’t move up your visit. Have you had your liver panel redone recently? I think MDA will want that info but will also run their own tests when you get there.
What trials did FoundationOne suggest? Those are the ones to investigate, not mine. I just wanted to share my results.
Check your weapons and spells and hang tough.
Duke
You’ve had a plan in place and are following the plan. Easy peasy. You’ll look back on this and say “Didn’t like having to have another resection, but my team came through for me and I’m good to go.” And then get on with your life.
Peace
DukeWhen I looked into the mule ride, they said people had to have no fear of heights. My reaction was that I could always close my eyes – and hope the mule was not afraid of heights and closed its eyes.
Duke
Is there any evidence from a CT scan that supports the spread of cancer?
There are people who have had multiple resections and are doing fine. I’ve never been satisfied with, “well, it might make things worse” argument. But I can’t find an oncologist either locally or at Mayo who agrees with me. Maybe it’s a good thing I went into nuclear engineering (reactors are easy to understand and control) instead of medicine. Besides, I hate the sight of blood – just like Dr. Martin.
Duke
Great to hear from you again.
My onc stopped the cis/gem after one round and went to carbo/gem. Stayed on that eight rounds and all seemed good to me but her script said to stop after eight because of possible kidney damage (not supported by any test results I had) and went to gem only for 10 rounds which eventually showed no effect. Then to FOLFOX6 – just completed fourth round. Getting a CT scan next week to see if it is working.
My two cents: by all means listen to MDA. Some treatment options prevent participation in a certain trial, but I don’t remember anything. Some also have criteria about women of child bearing age. And, unfortunately, many have requirements that your tumors are growing. I would push hard to look at other options before going to a trail. But MDA is one of the best places to be. Enthusiasm is no substitute for experience.
My FoundationOne report also showed IDH1 R132L. They listed the following trials:
NCT01534598,
NCT00748553
NCT01537744
NCT02073994which are mainly Phase 1. Only one, the last one, targeted IDH1. Follow this link.
https://clinicaltrials.gov/ct2/show/NCT02073994
Good luck.
Duke
Does anyone have experience with docetaxel as a treatment? Results of Search yield reports but I could not find any personnel experience.
There are lots of reports and experiences on irinotecan, not all of them happy ones.
Why is it that some oncs are more successful/aggressive/understanding of getting approval for off-label use. Is it simply they are more comfortable with what they know or are not willing to take risks?
Duke
Plan on it. No dates in mind yet. Recommendations on best time (low tourist number and moderate temperature) to see the Canyon? We will probably be tent camping at a state or national park somewhere.
Duke
Platelets and WBD/ANC were good enough to get a partial treatment today (still no 5FU push during treatment in the chair).
CT scan coming up next Monday to determine whether to continue FOLFOX6 with my current onc or start docetaxel at the Cleveland Clinic with Dr. Sohal.
Got into a discussion with the onc’s nurse about “bucket lists”. She said I had to have one. I said bucket lists are what you want to do before you die. She insisted that death had nothing to do with it. My bucket list is simple – wake up tomorrow morning. After that it gets a little fuzzy. Going to the Grand Canyon, Carlsbad Caverns, and the Sequoia National Forest are up there. Plus, going to Great Britain. Sorry, Nephew Gavin – you will not get me on that trail on a tandem bike. Ain’t gonna happen. Plus, going to our favorite campground in August – Piseco Lake, NY. Plus anything spontaneous that comes to mind. On one hand she insisted that I need to get organized and make a list, then she argued that I was too organized to be spontaneous. Go figure.
Anyway, the only constant is that things continue to change.
Steroids are kicking in – looks like another late night.
Peace
DukeLate note: Sometimes I think these people could screw up a one car parade. I didn’t feel right about the Monday CT – it was too early. I was told – “If you don’t like it, there is the number to reschedule.” So I got through to the onc’s nurse – she agreed – had no idea why it was scheduled then. Called to reschedule – found out the Dr. had not prescribe the oral barium before the scan. So I went from Monday at 09:00 to Friday at 10:00 for the scan but show up two hours early to start the barium oral. And I was originally told no liquids within three hours of the scan – wrong – they want me to hydrate as much as possible.
Folks – you’ve got to look after yourselves. Do not put medical people on a pedestal – when they fall off, things shatter.
Duke
If you follow the links you will eventually get here:
http://www.cancer.gov/news-events/nci-update/2015/precision-medicine-initiative-2016
Patient Emily Whitehead’s treatment sounds a lot like what Melinda is getting.
A good start – ask me again when the 2016 budget is approved.
Duke
My surgeon placed the port perfectly. Have not had an issue with starting the infusion. One nurse said it helps if I turn my head away and lift it – seems to help getting things going.
Even before the port, the steroid kept me wired all night. Tonight seems to be no exception. I frequently don’t get to bed until 4:00 – 7:00 am. A big hit on a work schedule. I’m retired now but was on full disability once CCA was diagnosed. I did a little work, maybe 10-15 hours a week, mostly from home on a special project. Kept my mind active.
Anti-nausea drug is administered during my infusion – works for me just fine.
Julie’s right about co-workers who “tough it out” and come to work when they are sick. More than once I’ve seen it literally work it’s way around an area, jumping from cube to cube. Yeah, I was part of that chain. Did I go to work? Yeah. Do as I say, not as I do. Your immune system is weak. Don’t take chances.
Ginger ale is right up there with chicken soup. Has to be at room temp and flat for best results.
Keep fighting Matt.
Duke
If your appetite drops, you need to graze. Small “meals” more often. Keep your weight up. I make up hot chocolate using breakfast protein powders.
Sennakot-S can be your best friend. I now use the generic version from WalMart.
Crackers with peanut butter – yes!
I started on gem/cis but stopped after one round. Onc was afraid of side effects. Went to carbo/gem.
If you get tired at work, talk with your supervisor (and people you work with – as a manager you probably have an office with a door. Tell them when the door is closed, don’t interrupt – they will understand.) and explain the facts of life. You are doing your best. Maybe agree to a longer work day or work from home (Should be easy to do – managers always have paperwork to do.) to make up the “lost time” while you need to rest. There has to be a way to make this work for both of you.
Margaret –
I’m sure this person meant well and was trying to comfort you the best way they could. But, until you’ve been there. they cannot understand.“Broader comprehension of reality.” Maybe we need to weave that in earlier when new people join us. It really covers a lot of territory.
Duke
I think you have some people who mean well but are not aware of what it is like to have cancer. Of course you are going to cry. I was diagnosed 19 months ago and still have moments where tears are the only way I have to express myself. As far as making your children more “resilient”, xxxx. My mother died from cancer when I was 15. The only thing that got me through the next week was anti-depressants. That’s where my “strength” came from.
Considering you got off to a bad start, you are doing great. Did they say why you have to have chemo? From what I’ve read here, adjuvant chemo is not unusual (my CCA is non-operable so I have no personal experience). Why the long wait – availibility of resources?
You are not alone in Australia. There are several of us down there.
Two bits of advice. First, find out the experience level of your onc. There is NO substitute for experience. Second, have him outline his total plan for you, with all the options, and “if-then” combinations. I learned from personal experience that these two are essential. You, and your main care-giver need to know what is going on and know where you are. Doctors are human and some have larger egos. Also, find out who your onc is going to to check his treatment. You want to make sure he is not flying solo. It would be a great idea to get a second opinion from an onc who is not part of this hospital system. I don’t know how practical that is, give the size of Australia and I have no idea what your insurance system is like.
As Lainy said, you are now part of a large family. We have our warts and shortcomings, but the one thing we have in abundance is love. Welcome to the family Cousin.
Duke
