dukenukem
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Sandie
You’ve found the only way to handle this (and all other cancers).Every day is a new miracle – treasure it.
Duke
You might want to do some research on Virginia Mason (Seattle) (University of Washington Medical Center?) simply because they are closer. But Mayo and MDA are definitely top-shelf, no doubt about it.
One suggestion before you order genomic testing – make sure you KNOW if it is in-network or how much it will cost you based on your insurance coverage. My onc said she thought it was free. Guess again. Billed at $5000 but “only” paid $1000 because it was out-of-network. But, it’s the only game in town if you are looking for that level of info. I used FoundationOne but I think there are more out there.
Duke
Charlotte –
Thank you for this info. I will follow it to determine when it will start taking patients.
Duke
Keep that image of a meadow firmly fixed in your mind. Fill it out with all the details you can – grass, flowers, trees, a slight breeze, maybe a brook running through it. This will help you over the next months and afterwards. Tell your dad that he can always contact you in that meadow. That should provide some measure of peace for both of you.
Duke
I had been on carbo/gem for 8 treatments and the main tumor in the liver was still shrinking when they took me off. Why? “Standard protocol is only for 8 treatments because it might damage the kidneys.” There was no indication of any damage to the kidneys. This is what happens when you have an inexperienced onc. Never confuse enthusiasm with expertise.
I had the same issue with blood in the nasal mucus. Definitely correlated to low platelets. I needed greater than 80,000 to get a treatment. Dropped to 40,000 sometimes. Seems that chemo destroys platelets. My problem seems to be that they are being captured in the spleen and do not circulate.
Duke
Is it too early for whale watching off the Cape? That’s one thing Aimee and I try to do whenever we are on a coast.
Duke
Catherine –
I’m sure that running out of vacation is one of the best things you could hope for. Maybe your employer would support days off without pay so you can take 3 day weekends. You’ve got DC, the Virginia coast, Delaware, Shenandoah Valley, and lots more within driving or train range.Duke
Very interesting. Recommend you read and discuss with your onc. Not everyone likes sorafenib (Mayo Clinic does, Cleveland Clinic and University Hospitals do not).
Duke
Kris –
Words can’t express the sorrow everyone here feels. I’ve followed Mark’s fight since I joined and was always inspired how the both of you celebrated every victory and came back after every setback. Even though Mark is not here with you physically to heal, know that he is with you always and will help you through this.Duke
I had the same issue with cold affecting my fingers – especially taking food out of the freezer – when I was on FOLFOX6. It gradually lessened over a week or so. Am now on irinotecan which is part of the FOLFIRINOX it seems.
Sounds like your Mayo team has the experience and a plan to get you through this. Hang in there.
Duke
And it’s not just teenagers who can be affected. In December I brought my two sons (ages 32 and 26) with me to a chemo treatment. My goal was to take some of the mystery out of it. Instead I think it sent their minds somewhere they had never gone before (at least consciously). We did not talk much about it on the way home or since. In the long run I think it was the right thing to do. Short term it may have been a shock to them.
Duke
