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Old 06-28-2012, 01:46 PM   #1
bevilj
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Join Date: Oct 2010
Posts: 18
Swollen Pituitary Gland/Optic Nerve

Hi All,

For the last several weeks I have been getting sick regularly (vomiting/headaches/double vision). I think I have spent more time in bed than out of bed. My tumor markers have been good lately so I was thinking it was a reaction to my meds (I tend to get every side affect listed).

I had a brain MRI last week and received mixed/interesting results. Luckily, no brain mets were found. But, my pituitary gland and optic nerve seem to be swollen. I have stumped my oncologist and the cancer board at the hospital and am now being referred to an endocrinologist for further investigation. A few possible diagnoses have been suggested but nothing really definitive at this point. In the meantime, I have started on a steroid to help with the inflammation and help me gain weight.

Has anyone had anything similar show up on an MRI? If so, what have you done to treat it? Does it go away?

Thanks in advance any guidance you have to offer ~
Jen
__________________
6/09 - self exam - lump!
8/09 –Dx - IDC, left breast. Suspicious mass,right breast (more testing required).
9/09 - Double mast/cholecystectomy /nodes removed. IDC confirmed, right breast. liver/bone mets. ER-/PR -/Her2 +. BRCA 1/2 -.
10/09 - Started Taxotere, Carboplatin, Herceptin, Zometa. Hospitalized with Tetany.
1/10 - Finished Taxotere, Carbo, continued Herceptin, Zometa. PET/CT - improvement.
2-3/10 - Rads (25 rounds).
8/10 – inflammation vs. malignancy?
1/11 – progression. started Xeloda.
9/11 – progression. pancreatitis or tumor? Chest ‘rash’ appeared.
10/11 – confirmed pancreatitis. Halted Xeloda.
11/11 – skin mets confirmed.
12/11 - started Tykerb, back on Xeloda.
1/12 – cut Xeloda dose in ½. skin mets fading!
4/12 - no more Xeloda. skin mets resolved.
8/12 - brain mets found.
9/12 - gamma knife and fractionated brain radiation.
1/13 - progression throughout body. brain mets shrunk/resolved. no more Tykerb.
2/13 - starting T-DM1 trial.
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Old 06-28-2012, 04:58 PM   #2
Sheila
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Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
Re: Swollen Pituitary Gland/Optic Nerve

Jen..hoping Brenda replies as she has had issues with the pituitary area...and she is the only one I can think of.....hope things improve for you!
__________________
"Be kinder than necessary, for everyone you meet
is fighting some kind of battle."



Hugs & Blessings
Sheila
Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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Old 06-29-2012, 06:18 AM   #3
fej223
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Join Date: May 2012
Posts: 2
Re: Swollen Pituitary Gland/Optic Nerve

Jen,

My mother had a similar condition back in the early 1990s. She had headaches and vision trouble, and her pituitary gland had swollen to the point where it was pushing the optic nerves away from the eyes. This was never described as any type of cancer, so the endocrinologist is probably the best place to go. My mother did require surgery to have the gland removed. I think they were planning to only remove part of the gland, but once they started they found that it all had to be removed. She recovered in a few days and her vision was back to normal almost immediately. She did have to take meds every day after that to replace the hormones that would normally come from that gland. She did live for over 10 years after that surgery, and only passed away 6 years ago due to unrelated heart issues. Hope this helps. Good luck!
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Old 06-30-2012, 08:45 AM   #4
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Re: Swollen Pituitary Gland/Optic Nerve

Be certain that they rule out a metastatic lesion to the pituitary gland accounting for your symptoms.
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Old 07-02-2012, 05:34 PM   #5
Skip
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Join Date: Feb 2010
Location: Riverside, CA
Posts: 19
Re: Swollen Pituitary Gland/Optic Nerve

Hello Jen,
I had an MRi of my head not to long ago and they found an enlarged pituitary gland, its called a "noma" mine is a prolactanoma, it a tumor not cancerous. I am on something called dosenex hope that is the correct spelling. They were looking for something else and found this. As long as the meds work no surgery is required. I get a blood test every six weeks testing for prolactin levels, the meds are working for me. There are other type of "noma's" like the one that keeps you growing. You know the people that are 8ft tall or more? Some of them have a "noma"that secrets the growth hormone.
The Pituitary is the "master"gland. Your endo doc will be able to diagnois this problem. If it needs to be removed my nero-surgen said he would go up through nose to remove it, so no scars would be seen.
I hope the best for you.
__________________
Wifes Dx:
Found tumor 11-09
Biopsy 11-09 positive: IDC Stage 4 grade 3 Her2 +, 3 nodes of 16 positive.
Surgery 12-09
CT scan: liver mets
MRI of Head: clean
Bone scan: clean
1st treatment: 1-28-10
Taxotere & Herceptin every 21 days
6 rounds of Taxotere
Herceptin every 21 days (on going)
Liver mets...GONE!
CT scans,bone scans & MRI's NED
NED to date
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Old 07-06-2012, 03:21 PM   #6
bevilj
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Join Date: Oct 2010
Posts: 18
Re: Swollen Pituitary Gland/Optic Nerve

Thanks all for your replies. I wanted to give you an update and let you know that prednizone seems to be helping so far. I haven't vomitted in 2 weeks now! And my headaches are seemingly better also. Headed to an endocrinologist in a couple of weeks so will share more after I learn about what could be going on and what we're going to do about it.
__________________
6/09 - self exam - lump!
8/09 –Dx - IDC, left breast. Suspicious mass,right breast (more testing required).
9/09 - Double mast/cholecystectomy /nodes removed. IDC confirmed, right breast. liver/bone mets. ER-/PR -/Her2 +. BRCA 1/2 -.
10/09 - Started Taxotere, Carboplatin, Herceptin, Zometa. Hospitalized with Tetany.
1/10 - Finished Taxotere, Carbo, continued Herceptin, Zometa. PET/CT - improvement.
2-3/10 - Rads (25 rounds).
8/10 – inflammation vs. malignancy?
1/11 – progression. started Xeloda.
9/11 – progression. pancreatitis or tumor? Chest ‘rash’ appeared.
10/11 – confirmed pancreatitis. Halted Xeloda.
11/11 – skin mets confirmed.
12/11 - started Tykerb, back on Xeloda.
1/12 – cut Xeloda dose in ½. skin mets fading!
4/12 - no more Xeloda. skin mets resolved.
8/12 - brain mets found.
9/12 - gamma knife and fractionated brain radiation.
1/13 - progression throughout body. brain mets shrunk/resolved. no more Tykerb.
2/13 - starting T-DM1 trial.
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