miaka618

I had a 2 week long headache and ended up in the ER for an emergency MRI. My pituitary gland was definitely swollen. Almost non-existent cortisol and thyroid hormones. I take pills for that now.

I believe it. I only had one dose of ipi and my knees were killing me. All better now.

You might need to call them to clarify. According to SSA.gov you will qualify for SSD regardless. Here is a link to the conditions that automatically qualify.

https://www.ssa.gov/disability/professionals/bluebook/13.00-NeoplasticDiseases-Malignant-Adult.htm#13_29

 

Good luck!

Yes, you should definitely bring it up with your doctor. There are quite a few lymph nodes around the jaw. One of my positive lymph nodes was under the ear near the jaw bone. It's best to play it safe.

Good luck to you!

I had surgery around my ear and down my neck over 2 years ago now. The feeling is still gone, but I don't notice it anymore. I had a hard time sleeping on that side for about a year because it was so weird, like sleeping on rocks, but now my body has seemed to adjust to the lack of feeling. My boyfriend sometimes plays with that ear to make sure I still can't feel it and threatens to peirce it in my sleep. haha!
 

Awesome!!

I’ve had my parotid and lymph nodes removed from my right side and it wasn’t that bad for me. There is feeling loss in the area and my mouth gets dry on that side, but recovery time was only a couple weeks. They did bump my facial nerve which caused partial paralysis on that side of my face. That took several months to recover. First bite syndrome was pretty bad. It’s where you get a pain in your cheek from eating something sour, only it happens with everything you start eating. What was hard was when they went into my neck and took out 30 more lymph nodes. My neck was so stiff for quite a while. It was hard to drive because I couldn’t turn my head.
Good luck!

You might be having a mild allergic reaction to the injection. Talk to the radiologist about it before your next scan and see what they say.

My experience is a little bit different. Every lymph node that lit up for consecutive scans were eventually biopsied and came back positive which bumped me up to a 3C. I have had about 6 additional positive nodes removed. At the same time, I haven't been on any extensive treatment with the exception of radiation. Right now we are keeping our eyes on 3 additional lymph nodes that are lighting up and increased in size, but their activity has downgraded a bit since the last scan.

I would say that because he is on treatment, the lymph nodes might be reactive and it is best just to keep an eye on them.

Oh wow, that is scary! I haven't been more sick than the occasional cold since I've gotten hypophysitis, so I have no idea what to expect from an adrenal crisis. I agree, I think a forum for these specific topics would be good. If one cannot be found, perhaps one can be started. Several people, including myself, own websites where one could easily be started.

Kristi, did you hear back from your oncologist? It kind of sounds like hypophysitis to me even though it's been several months since your last treatment. From my understanding, immunotherapy side effects can come on at any time. With my hypophysitis, the pressure was right behind the eyes and it cause my eyes to go wonky from time to time and it just got worse as time went on. 

I hope you can get rid of those headaches!

Wow! My one treatment was only $275,000. A million dollars is a little bit ridiculous.
Indeed get your hormones checked. My hypophysitis affected my cortisol and thyroid. These 2 pills are now my best friends.

Yes, me as well. My oncologist told me to go to the ER. I had an MRI (which was quite uncomfortable with the headaches) and put on dexamethasone soon after. My headache was gone within 2 hours of taking the steroids. I was suffering for about 2 weeks up until that point. It was quite a relief.