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Looking for others with Pituitary Adenoma

Posted by dmedina71 @dmedina71, May 3, 2016

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

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torino1qm | @torino1qm | Dec 7, 2016

I really have minimal side effects except periodic visual blurriness, no headaches. I am under a neuro surgeons care who does not recommend surgery so far. I do get tired a lot, find it difficult to walk very far. What are others experience with this type of tumor?

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4 replies
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shellsk24 | @shellsk24 | Jun 20, 2016
In reply to @colleenyoung "Hi @dmedina71 Just thought I would check in. How is the decision-making going with your husband's..." + (show)
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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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Hi @colleenyoung , thanks for checking on us. My husband has about 2 wks left of his daily radiation regimen. It's going well. He's had a little fatigue, loss of appetite, and that's about it. I have to remind him how important it is to eat and keep up his strength, so he manages. We only travel about 10 miles to the treatment center everyday so that's a plus. My concerns are of course AFTER the radiation treatment is over. I have researched that this is the time that you really have to monitor symptoms, and medications, as the pituitary will begin to slowly react to the trauma. We have learned of course this is a lifelong monitoring regimen that will need to be followed with 4-5 times yearly blood tests to monitor the hormone levels, etc. I'm just hoping and praying for no lasting detrimental effects of the harsh radiation. Only time will tell...

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dailychronicsupportgroup | @dailychronicsupportgroup | Jun 19, 2016
In reply to @dailychronicsupportgroup "Hello, I also have a pituitary tumor, AND a pineal cyst. They are just monitoring it...." + (show)
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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 very much

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Colleen Young, Connect Director | @colleenyoung | Jun 17, 2016

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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1 reply
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Moderator
Colleen Young, Connect Director | @colleenyoung | Jun 17, 2016
In reply to @dailychronicsupportgroup "Hello, I also have a pituitary tumor, AND a pineal cyst. They are just monitoring it...." + (show)
Profile picture for dailychronicsupportgroup @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.

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dailychronicsupportgroup | @dailychronicsupportgroup | Jun 16, 2016
In reply to @dailychronicsupportgroup "Hello, I also have a pituitary tumor, AND a pineal cyst. They are just monitoring it...." + (show)
Profile picture for dailychronicsupportgroup @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.

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shellsk24 | @shellsk24 | Jun 15, 2016
In reply to @dailychronicsupportgroup "Hello, I also have a pituitary tumor, AND a pineal cyst. They are just monitoring it...." + (show)
Profile picture for dailychronicsupportgroup @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.

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dailychronicsupportgroup | @dailychronicsupportgroup | Jun 15, 2016

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.

REPLY
4 replies
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dmedina71 | @dmedina71 | May 25, 2016
In reply to @shellsk24 "My husband was diagnosed with a rather large pituitary tumor in 2010, had emergency surgery to..." + (show)
Profile picture for 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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Was the decision of the treatment Co joined with endocrinologist and<br>neurosurgeon. That's how we are doing it. He got diagnosed also cushing ' s<br>Disease,and your husband<br>.

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shellsk24 | @shellsk24 | May 25, 2016
In reply to @shellsk24 "My husband was diagnosed with a rather large pituitary tumor in 2010, had emergency surgery to..." + (show)
Profile picture for 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.

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