Sunday at the Conference and Mayo Clinic this week

Yesterday, Sunday, the day started early with a 7 a.m. focus group.  This research is being done to help companies designing chemotherapy drugs for Thyroid Cancer patients more fully understand the patient's experience.  After that I packed up and loaded my car then went to conference central to say my good-byes to new friends and old.  I then sat in on the one session that drew me to the conference in the first place - Ethanol Ablation.  While the session was quite good for newbies, it was not that good for those of us who already know the terminology and such.  It was 90% ThyCa 101 and 10% ethanol ablation.  But I got my questions answered and more importantly met someone who had the ethanol ablation done just a few weeks prior.  So, for those of you who don't know what it is, ethanol ablation is injecting the neck with alcohol to kill off thyroid cancer.  This was pioneered at The Mayo Clinic and is suitable for patients with recurrent disease in the lymph system of the neck (where it most often recurs).  Initial surgery and RAI is likely not avoidable.  But down the road, this might be a suitable treatment for someone facing another surgery.  The man I met had three surgeries already and was not looking forward to a fourth, so he did his research and opted for the ethanol ablation.  He said it burned and he had pain for about one hour and he drove home from Rochester, MN to Chicago, IL the same day - sharing the driving with his wife.  Now, that's cool and that's the future!  I also learned from the presenter that often the burning sensation radiates up into the ear because of a nerve that passes through the thyroid bed that impacts the ear.  That was my "AH HA" moment of the conference.  So many of us ThyCans have ear issues, yet the doctors generally won't listen to our complaints.  But here was a doctor admitting that there is a nerve that goes right through the area we all have had operated on and have had radiated.  BINGO.  There IS a connection.  I met others at the conference with the ear pain, whooshing sounds, fluid gushing, ringing, bells, whistles, dizziness, pain, etc.  These are all the same things I deal with day in and day out - worse when I fly or even go up and down in a high speed elevator in a tall building.  Others shared similar stories.  It was nice to not feel "weird" and I heard so many other people say the same thing..."I'm so glad I came, I feel like I'm not alone...like I'm not weird."  That theme came up again and again.  Oh, did I mention the average weight gain after diagnosis is 40 pounds?  BINGO.  I had a few BINGO moments.
Anyway, I also learned that Ethanol Ablation must be done in the right hands since you really don't want to inject the wrong area - it burns and destroys the tissue.  In Italy they are experimenting with Cryo treatments - using very cold temps to kill thyroid tissue.
After that session I went to one on how to dose with thyroid hormone replacement for long term management.  It was refreshing to see a doctor who is OK with adding a little Cytomel into the mix for those who want to add that to their Synthroid.  He also talked a very little bit about the new drug Tirosint.  Tirosint is like Synthroid but with no additives.  It only contains T4, glycerin, gelatin and water.  The Tirosint people were there and I have a hand out for me, one for my new doctor up at Mayo and a coupon for a free Rx.  I'd sure like to try it...we'll see.
By then it was mid-day and I wanted to get on the road to avoid driving in the dark.  I went to Caputo's market and stocked up on some Italian goodies - sfogliatelle pastry for me, baklava for Bob, Sicilian mini cannoli for us both (with sheep's milk ricotta), New York style crumb cake, Italian sweet sausage with fennel, fresh cardoon, imported Genoa salami, imported mortadella with pistacios (that did not even make it home - Bob does not like it so it was my lunch in the car), San Marzano tomatoes, a variety of dry pasta, tortellini salad, pierogies (potato and sauerkraut), jars of capers, gardenia relish, sweet cherry peppers and a focaccia.  Of course some fresh mozzarella and a variety of grated cheese.  :-D
After the long drive home I was tired so the Italian treats got put away and some were eaten for dinner.  Today, Monday, I took a vacation day to recover.  I have vertigo from all the driving.  I can't drive more than about 2 hours without it somehow leading to vertigo...it's that ear thing.  I also spent the past 6 hours putting my medical records together into a binder to take to Mayo on Wednesday.  We'll review the hyper-parathyroidism and ongoing routine surveillance for ThyCa.  I'm smarter now after the conference so it's a great time to go to Rochester.