Pituitary tumor symptoms: joint, muscle and body aches

@sturns - I’m sorry to hear about your wife’s struggle with her treatments, but the results of the clinical trial she is in are incredible!
The two of you are fighters and you apparently have access to the best cancer care.
I agree that it seems that it is more than a coincidence to have the pituitary problems and NET.
My daughter also had Mary Lee Vance- superb.
Her surgeon said that he tried to get everything but there was a possibility that some cells remained near the carotid artery. He also said that if she needed more surgery it could be done with Gamma knife.
It has been 11+ years and so far all looks good.
She had extreme body pain after surgery but was lucky to find a good pain management doctor where we live. It took time to get rid of it.

I get tested a lot for my hormone levels and they say the Pituitary issue has nothing to do with the NET I have. I disagree, but what do I know. I do know the pain can go off the scale and mentally it feels like my hormones are off but last time I had Blood work everything was good..?? I am being seen by 2 dr.s, one is the Moffitt center and my treatments are from Florida cancer specialist's because the drive to Moffitt is 4 hours one way, but they are the main one because they are one of the top 5 for this type of cancer. My wife had stg. 4 metastatic melanoma and they just wanted to put her on a clinical trial to give her another year or two. The 7 large tumors are gone and that was 7 years ago but the side effects are real bad, but she's here.

Yes they are the best , my Dr. was Dr. edward laws and endo was Mary lee Vance, both great and if I had to have a hospital experience it would be there. I also met the man who invented the gamma knife. He looked just like Einstein and came in, sat down like I was his only patient for the day and explained why the GK couldn't be used, because the tumor was to big. But he took the time and he didn't have to. That's what it's about, making the patient calm and informed so they aren't so nervous. Glad she had a good experience to.

@sturns - My daughter also had her surgery at UVA - 11 years ago. Excellent facility. Who was your surgeon? My daughter had Dr. Oldfield- wonderful. Unfortunately , he has passed away.

@georgiamartin - It must be difficult to live with that pain for so long and no answers.
Did your Endocrinologist test for all the pituitary hormones?
It seems like a long time to wait so many months for another MRI. What does the Endocrinologist say about that?

@sturns
Are the numerous tumors in your liver and lymph glands related to the pituitary tumor? What’s the plan for them?
You have been through a lot.

I think after the surgeries and they get your hormone levels corrected you will see a big change.
So stay strong even if it's easier said then done, but I've been there, 22 years, and now have p net, fun!!
I am sure your still just as beautiful as can be, remember we are our worse critics. I wish you well and my prayers are out there for you. Take care. If it weren't for my wife I don't know what i'd do..
Anthony

Try and go to palliative care, they carry more weight than a pain clinic does. These days it is hard to get pain meds do to the reaction of the masses and scare tactics from the news. This is what it is for. Good luck.
Anthony

My first surgery was 22 years ago and she messed up and took less than 5% of the tumor out so 8 mo's later I went to UVA and they did the job right. I have had no problems since except dealing with hormone replacement. The tumor got pissed off after the first surgery and wrapped around the artery and they took out as much as they could and I still have had no issues besides the net that has given me problems. I think she will do just fine. They did have to take the gland out but you can survive with just the stalk of the P-gland.

In 2000 I had 2 pituitary tumor operations. Large tumor, but they had to take out the p-gland and I have had full hormone replacement since, I turn 60 in a couples of months. I am having pain that sometimes is off the scale. The dr. say's it has no correlation to the pnet I have. I beg to differ. They don't know enough about this cancer to really know. I have 23 tumors in and on my liver with that many or more on my lymph glands and else were within my upper torso. I had no pain with the pituitary issue but that was me and we are all different. Hang in their and get a specialist in net for sure.

Anthony