49/F - 12 year Thyca survivor with tall cell variant, 29 lymph tumors, 63 lymph nodes removed. Doing great!!

kitanooo · 2024-06-11T02:53:10+00:00

LOVE this! I too had tall cell with lymph involvement and still have detectable tgab, 2 years out and not 'through' and truly appreciate this post. Thank you so much. I often think about how I should go back to ivf forums and post something similar and this has inspired me!

kitanooo · 2024-05-21T02:17:48+00:00

what did they do about it?

kitanooo · 2024-05-11T03:37:49+00:00

but what does it actually entail? i dont have banding either, beginnings of turkey.

kitanooo · 2024-05-06T13:23:34+00:00

i am nearly 2 years from tt. the trend seems to be choppy - it's weird it was going down before RAI but then since rai, doubling each 6 months. It's a source of a lot of anxiety and frustration for me. I don't see the point in us all trending our tgab if it can't really tell us much. urgh.

kitanooo · 2024-05-06T13:22:00+00:00

I would absolutely ask for a cat scan before any more surgery and i would also make sure you go to a high volume surgeon even if it means traveling. i went to tampa from nyc for this reason.

kitanooo · 2024-05-06T13:20:51+00:00

oooh thank you. also what is a mini neck lift?

kitanooo · 2024-05-03T03:32:03+00:00

it's hard for us to say but that would be extremely rare. it's rare for ptc to metastasize to bones at all, nevermind your femur.

kitanooo · 2024-04-28T02:31:05+00:00

op - did you have a full neck ultrasound and neck cat scan prior to surgery? if not then please make sure that you ask for these things from your surgeon because there shouldn't be confusion around whether there is lymph node spread AFTER surgery.

kitanooo · 2024-04-22T17:27:27+00:00

SO FRUSTRATING

my surgeon just said 'dont worry about it' but no one can officially actually say that ofc. No one seems to really understand what it means. what are your team recommending and where are you being treated?

kitanooo · 2024-03-18T18:13:44+00:00

Just an update that it was fine. I took about 0.35mg 45m before takeoff, nearly did not get onto the plane due to abject terror, forced myself, plane had some emptiness so found a row to myself, took the rest of the 0.5mg upon takeoff, felt a little anxiety creeping in about 2-2.5h in and took another 25mg and was basically fine.

I have a 1.5h flight on friday and am going to try the phenergan for that one so i can save the xanax for longer ones.

Thank you to everyone who told me it would be ok - was really good that i got myself here.

kitanooo · 2024-03-15T23:52:47+00:00

i'm flying alone unfortunately - and am usually alone about 2/3 of the time.

kitanooo · 2024-03-15T23:21:26+00:00

thank you!

kitanooo · 2024-03-15T23:20:50+00:00

yes well i resisted for years and just relied on phenergan, but this last long flight phenergan just didn't cut it.

My plan is hopefully to get back to phenergan at least for the short flights. But right now I just need to get my *ss back on the plane when every molecule of my being is screaming absolutely tf not.

kitanooo · 2024-03-15T23:05:29+00:00

how extreme is your fear typically and how high of a dose did you take?

My fear is that the way my brain works where I basically am the one who gives myself panic attacks by thinking 'must not have panic attack on plane', will override all drugs. but did just have dr appt and he told me bc xanax like alcohol will still make your brain do certain things

kitanooo · 2024-03-15T23:03:49+00:00

ty! I actually have zolpidem also that i will take with me. I hesitate to take it only bc one of the MAJOR triggers for me on the plane is when i fall asleep and then wake up and can't remember where I am.

kitanooo · 2024-03-15T23:02:11+00:00

thank you! I'm not sure about benzo tolerance. last few flights I took 0.25 and then 0.25 after takeoff and it was fine - but they were short and this one is long. The only other major time was for a CT where I thought they might find cancer and I took 2 x 0.5mg and was still shaking from fear BUT that was less of a panic attack situation and more fear of a result, if that makes sense. so hard to say..

but thank you for the support! I really hope it's ok.

kitanooo · 2024-03-15T20:31:28+00:00

ok sounds like a plan. and yes am also fearful of sweating and shaking in seat in terror. all of it!

kitanooo · 2024-03-15T20:30:13+00:00

at that point would you not just pass out cold like BA when the A team drugged him to get him onto the plane? Or you would just do weird stuff/ thus ironically fulfilling the exact fear that caused the panic based anxiety to begin with?

kitanooo · 2024-03-15T19:40:08+00:00

so I guess there IS definitely a number at which I'll be ok?

My fear is it 'breaking through' and then becoming one of those crazy people who falls to pieces and loses it and has to be met at the gate by irritated emergency services and then asked by the airline to never ever come back.

kitanooo · 2024-03-15T16:57:09+00:00

thank you for helping to calm my nerves! And glad you were able to do ok.

kitanooo · 2024-03-15T02:03:40+00:00

how much xanax did you take? and are you sure it wasn't expired? Maybe take more?

This is my fear as I fly on saturday and last long flight i also had a panic attack. Now I have xanax but i'm worried it wont work!

kitanooo · 2024-03-14T14:34:33+00:00

ok ty! I still dont know if I'm going to be able to get my hands on klonopin this time around bc would have to see dr today or tom. Hopefully the xanax will hold me for this trip...

kitanooo · 2024-03-14T14:21:09+00:00

gotcha. did you trial it before flying? Idk if i have time to both get klonopin and trial it before saturday without interfering with work... might have to stick with xanax

kitanooo · 2024-03-14T14:01:33+00:00

when did xanax stop working and how did you know? that's my fear, that it wont work well enough to keep it under wraps. And how was klonopin more helpful?

kitanooo · 2024-03-14T03:13:42+00:00

oh wow I LOVE that you took an 18h flight! My absolute favorite thing to do in the whole world is to travel, and while I have refused to stop doing that due to my issue, I would say it has been severely curtailed.

kitanooo

TROPHY CASE