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dmedina71
@dmedina71

Posts: 10
Joined: May 04, 2016

Looking for others with Pituitary Adenoma

Posted by @dmedina71, May 3, 2016

I like to now if their is anyone who has been diagnosed with Pituitary Adenoma

REPLY

Hi @dmedina71, welcome to Connect.
I’m tagging several Connect members who have talked about their experience with pituitary tumors (adenomas) in the past @neffjsn @osbonkim @shawnpaul @carolina2501 @donperryman @cathy14 @markvic @mybeau12. While it’s been awhile since they’ve posted here, I hope some will return to join this discussion.

@dmedina, you mention in another discussion thread that it is your husband who has been diagnosed with a pituitary adenoma. How is he doing? How are you doing? We look forward to getting to know a bit more about you.

I had a pituitary tumor removed in October 2014 at the University of Michigan Hospital. I have acromegaly.

@lindalongberry

I had a pituitary tumor removed in October 2014 at the University of Michigan Hospital. I have acromegaly.

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Hope you are doing well. Mine taken out in 1987, Mayo Rochester, take hormone supplementation. No residual bad effects since. Hope you do as well.

I was diagnosed with Pituitary Adenoma….. I was 33 years old with 3 kids, 15yrs, 5ys, 2yrs old… I am 58 years old today.

@conniemk

I was diagnosed with Pituitary Adenoma….. I was 33 years old with 3 kids, 15yrs, 5ys, 2yrs old… I am 58 years old today.

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Hi, how was it after surgery,and how long did it take you to fully recover
back to normal life style.how are you feeling now.

I was 43 at the time. Psychologically, it took a couple of months to a year to relax about the whole thing. I’m 72 now, been taking HGH, Testosterone, and Synthroid, pretty much steadily since the surgery (the HGH came into the picture shortly after Genentech came out with the recombinant version). I still choose to work (self employed) financial services. I play tennis regularly, easily run 3-4 miles at a time maybe 3 times a week, swim half a mile a couple of times a week, workout with weights/machines a couple of times a week, and basically have no chronic injuries such as knee, hip, shoulder, back, or whatever. I’ve done these things regularly my whole life (run in total around 50,000 miles). I’m grateful and know I’m lucky but actually feel kind of creepy sometimes listening to the other people my age complain about their aches and pains since I don’t really have any to speak of with them. I’m slower running and swimming than I used to be. I’m saying all of this because maybe the hormone supplements have actually kept my levels at more optimum levels than others my age, allowing me to so far escape some of those age related maladies. So maybe, strangely, the surgery had a plus side.

My husband was diagnosed with a rather large pituitary tumor in 2010, had emergency surgery to remove as much of it as possible, then a second surgery with a camera to remove more of it 6 months later. The most recent annual MRI came up with a slight increase in size this year, so the doctors recommended radiation therapy – cyberknife. Radiation in itself is a bit scary so were not sure what to expect. He will get low dose therapy 5 days a week for about 6 weeks. We are just now beginning the radiation process this week (May 23, 2016). He is in GREAT spirits – it’s me with the worrying thoughts. Has anyone else had radiation therapy for a pituitary tumor that has recurred – or begin to grow? I’ve also heard there is medication that can be take to help reduce the tumor as well, but he wasn’t a candidate for that.

@shellsk24

My husband was diagnosed with a rather large pituitary tumor in 2010, had emergency surgery to remove as much of it as possible, then a second surgery with a camera to remove more of it 6 months later. The most recent annual MRI came up with a slight increase in size this year, so the doctors recommended radiation therapy – cyberknife. Radiation in itself is a bit scary so were not sure what to expect. He will get low dose therapy 5 days a week for about 6 weeks. We are just now beginning the radiation process this week (May 23, 2016). He is in GREAT spirits – it’s me with the worrying thoughts. Has anyone else had radiation therapy for a pituitary tumor that has recurred – or begin to grow? I’ve also heard there is medication that can be take to help reduce the tumor as well, but he wasn’t a candidate for that.

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Hi Shells.

I wanted to ask, did you and your husband seek more than one opinion. Do
you live here in Miami,Florida.
We have been monitering for 2 years but the doctor said,not to prolong it
anymore. Even though his MRI’s show is stable and has not grown. We go to
University of Miami/Jackson Memorial Hospital. maybe you should get another
opinion.
Endoctinologist check on my husbands cortisone level by spit and blood test.

Liked by shellsk24

@shellsk24

My husband was diagnosed with a rather large pituitary tumor in 2010, had emergency surgery to remove as much of it as possible, then a second surgery with a camera to remove more of it 6 months later. The most recent annual MRI came up with a slight increase in size this year, so the doctors recommended radiation therapy – cyberknife. Radiation in itself is a bit scary so were not sure what to expect. He will get low dose therapy 5 days a week for about 6 weeks. We are just now beginning the radiation process this week (May 23, 2016). He is in GREAT spirits – it’s me with the worrying thoughts. Has anyone else had radiation therapy for a pituitary tumor that has recurred – or begin to grow? I’ve also heard there is medication that can be take to help reduce the tumor as well, but he wasn’t a candidate for that.

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Hi @dmedina71 Yes we had 3 opinions. 2 doctors suggested the radiotherapy as the best approach. Our MRI monitoring was for 5 years then the 4th and 5th years started showing growth. We are not in Florida we are in Arizona.

@shellsk24

My husband was diagnosed with a rather large pituitary tumor in 2010, had emergency surgery to remove as much of it as possible, then a second surgery with a camera to remove more of it 6 months later. The most recent annual MRI came up with a slight increase in size this year, so the doctors recommended radiation therapy – cyberknife. Radiation in itself is a bit scary so were not sure what to expect. He will get low dose therapy 5 days a week for about 6 weeks. We are just now beginning the radiation process this week (May 23, 2016). He is in GREAT spirits – it’s me with the worrying thoughts. Has anyone else had radiation therapy for a pituitary tumor that has recurred – or begin to grow? I’ve also heard there is medication that can be take to help reduce the tumor as well, but he wasn’t a candidate for that.

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Was the decision of the treatment Co joined with endocrinologist and
neurosurgeon. That’s how we are doing it. He got diagnosed also cushing ‘ s
Disease,and your husband
.

Hello, I also have a pituitary tumor, AND a pineal cyst. They are just monitoring it. Not sure what is next. I moved to a new state, and don’t have any doctors. Waiting for my disability court date in August. (already been denied twice) this time I go in front of the judge. Then I can start seeing doctors. Otherwise, I just sit here with them, not knowing what’s going on in there.

@dailychronicsupportgroup

Hello, I also have a pituitary tumor, AND a pineal cyst. They are just monitoring it. Not sure what is next. I moved to a new state, and don’t have any doctors. Waiting for my disability court date in August. (already been denied twice) this time I go in front of the judge. Then I can start seeing doctors. Otherwise, I just sit here with them, not knowing what’s going on in there.

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Hi @dailychronicsupportgroup Very sorry to hear your disability has been denied. Do you have symptoms associated with your pituitary tumor? Did they say how big it was. The sooner you can get into your doctor – a neurologist, neurosurgeon, and an endocrinologist the better. It’s very important to stay in tune to your body and take note of the symptoms so that you can explain them to your doctor. Good luck with your next court date.

@dailychronicsupportgroup

Hello, I also have a pituitary tumor, AND a pineal cyst. They are just monitoring it. Not sure what is next. I moved to a new state, and don’t have any doctors. Waiting for my disability court date in August. (already been denied twice) this time I go in front of the judge. Then I can start seeing doctors. Otherwise, I just sit here with them, not knowing what’s going on in there.

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Thank you for your comment. I do have symptoms, such as nausea, vomiting, and dizziness. I fall down sometimes, and bump into everything. I had all those doctors, (neurologist, neurosurgeon, rheumatologist, endocrinologist, and pain management because I have a list of issues, including occipital neuralgia, and fibromyalgia, chronic Achilles Tendonitis, just to hit the most important ones)when I lived in California, but we recently moved to Texas, and the premium for insurance for me is $800 a month, so I have been going without care for the past 6 months. Hoping I will be approved and finally get eligible for care. I’m a case study.

@dailychronicsupportgroup

Hello, I also have a pituitary tumor, AND a pineal cyst. They are just monitoring it. Not sure what is next. I moved to a new state, and don’t have any doctors. Waiting for my disability court date in August. (already been denied twice) this time I go in front of the judge. Then I can start seeing doctors. Otherwise, I just sit here with them, not knowing what’s going on in there.

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Fingers crossed for your getting approval @dailychronicsupportgroup. That’s quite a list of conditions to monitor. I’m sure you’ll breathe easier once you have coverage.

Hi @dmedina71 Just thought I would check in. How is the decision-making going with your husband’s care choices? Has he started radiation treatment?

@shellsk24 how are the radiation treatments going for your husband? Do you have to travel far to the treatment center? And, of course, how are you doing!?

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