Your case is unusual since the skin on the neck is typically the first thing to heal, however, your immune system is still compromised and opportunistic infections are very common post Tx. DO NOT SCRATCH IT! They gave me antibiotics (for the infection) and a steroid cream at one point (for the itching) post Tx. (you could also be scratching it in your sleep)

You are way too young for this kind of stuff and it saddens me to hear about your trials.

You werent given steroids were you? They can cause the swelling and tenderness you described. Hope you are feeling better.

Nope, no steroids, just a medication to raise my blood pressure during the day time when I'm up and moving about (it drops really low when I stand up). I start my new medication tomorrow and we will see if it causes a reaction. I still have a little swelling going on but I'm pretty sure I'll just have to massage it out because of the lack of lymph nodes and the redness has gone down significantly today and the itching is minimal now. My face is peeling a little bit now but not too bad so I'm keeping moisturizer on it.

Gary- the skin on my neck is healed up but what I had read about radiation recall is that it can occur a while after radiation was given, so who knows. Maybe I'm just stretching for things to blame it on! And yes, I'm too young, but I've grown a lot from everything and have met some amazing people along the way (I've got a kick butt ENT!!) so why not.

How low was your blood pressure? I went for several months with mine being low like around 80 over 60. I was fine and the docs said they werent worried since they thought it was from losing too much weight. They did get concerned when it dropped to 74 over 46. I was already in the hospital and then they got concerned about it, but never to the point I was given meds for it.

Hope the new meds work for you and dont cause any of those awful side effects you had before.

The problem isn't that I have low blood pressure, it's text book when I'm sitting or laying down. The problem is that it drops like a rock whenever I stand up, the lowest on record that I have is 78/52 and they had to stop the test at that point, but it was still going down. It took about 10 minutes to get to that point and my pulse during that time shot up from the mid 80s to 136. So, it's an non-autoimmune issue (something like neurocardiogenic syncope except I've never actually fainted from it yet) and unfortunately there's no clear cut treatment method because not much is known about it - it's all trial and error which is the stage I am in right now!

Wow, thats a shame you have those issues. You are way to young for any of these problems. Hope they fix you up soon.

Yep, I get all the crazy problems that I've never heard of before! I like to keep my doctors on their toes! They think the blood pressure issue is either from my chemo or my surgery but none of my doctors have ever actually seen it from either of those they just know they can be causes. I just keep reminding them that nothing about me is normal so they can throw the book out the window! It keeps them talking about me though and it makes me feel like a rock star! Haha.

Stephanie I am going to keep my eye on this thread as my husband has had this problem too cept when he is sitting or lying down his blood pressure has actually been high or normal and when he stands up he gets dizzy and low blood pressure. The joke is one doctor told him to consume more salt guess not taking him seriously I guess.

Please let us know what happens...inquiry minds need to know

Nope, a high salt diet is an actual treatment for it. I'm doing that as well as the medication - a salt absorbing hormone. So, your doctor isn't actually crazy! So, tell him to eat his salts - they help raise the blood pressure. I had to rule out blood sugar first to make sure that wasn't the cause and then I had a tilt table test to confirm.

Hubby is diabetic and now since his last stay in hospital never saw or recorded the low pressures just saw higher ones as he was always sitting or laying during readings...so they have put him on high blood pressure and ever since he seems to be really lathargic and just overall not feeling well. I need to get him to understand that his feelings could be medicine related...