Johns Hopkins Pituitary Patient Day

Posted on September 6, 2015 by MaryO

Join us on Saturday, September 19, 2015

7th Annual Johns Hopkins Pituitary Patient Day
Saturday, September 19, 2015, 9:30 a.m.
Location:
Johns Hopkins Mt. Washington Conference Center
5801 Smith Avenue
Baltimore, MD 21209
map and directions

This is a free event, but seating is limited. Reserve your space now: Please R.S.V.P. by September 9, 2015 by email (preferred) to PituitaryDay@jhmi.edu  or by calling Alison Dimick at 410-955-3921.

Agenda

Time Topic Speaker(s)
9:30 – 9:55 AM Registration
9:55 – 10:00 AM Welcome and acknowledgements Roberto Salvatori, M.D.
10:00 – 10:25 AM Different kinds of pituitary adenomas: non-functioning, acromegaly, Cushing Gary Wand, M.D.
10:25 – 10:50 AM New and old medications for pituitary disease (acromegaly, Cushing, prolactinoma, hypopituitarism) Roberto Salvatori, M.D.
10:50 – 11:10 AM A patient’s story TBA
11:10 – 11:30 AM The eye and the pituitary gland: Why it is important to see the right doctor Dan Gold, D.O.
11:30 – 11:50 AM Surgery for pituitary tumors: Pictures from the operating room in acromegaly, Cushing, non-functioning masses Gary Gallia, M.D., Ph.D.
11:50 – 12:10 PM Radiation therapy for non-functioning ademomas, acromegaly or Cushing: Not so scary after all Lawrence Kleinberg, M.D.
12:10 – 12:30 PM Psychological issues in Cushing, acromegaly and other pituitary disease Tracy Vannorsdall, Ph.D.

 

Filed under: Cushing's, Meetings and Conferences, pituitary, Treatments | Tagged: , , , , , | Leave a comment »

Myth: It is MY fault that I got Cushing’s…

Posted on December 12, 2014 by MaryO

Myth: “It is MY fault that I got Cushing’s. I did something wrong that caused me to be sick! If I would have just done XYZ, this would not be happening to me!”

myth-busted

Fact: This is a very controversial topic because we don’t like to talk about it. However, many people struggle with this myth. We NEED to dispel this myth my friends! Patients themselves assume responsibility, accountability, and self blame for becoming ill.

To compound all of that, patients are often told by loved ones, family, and sometimes even their churches or other supports that there is something that THEY could be doing or haven’t done that has caused their declining health. “If you would just follow that raw food diet, then all of your symptoms would go away”, “Juicing is the answer! I told you to juice and you wouldn’t get those tumors!”, Sometimes, you are told that if you would just pray harder or have greater faith, then there is no way that you would be sick right now. And my absolute favorite, “you are just too obsessed with being sick and having Cushing’s!  Stop thinking that you have it and it will go away!”.

Now, don’t get me wrong, I find value in “positive thinking” and affirming health, wealth, and all kinds of great things. This helps build up strength and personally keeps me motivated, especially during the times that I feel like absolutely throwing in the towel and giving up!

However, I am NOT the reason and YOU are not the reason for this war with this dreadful disease. What many people don’t understand is how tenacious, brave, courageous, and INDOMITABLE you are! Cushing’s patients do not just get surgery and then everything is magically OK.

Many patients have to go through multiple surgeries, sometimes radiation, sometimes years of testing to find the ultimate source of the disease, even after having several organs messed with. Even after patients obtain their “cure”, they are faced with residual and lingering negative effects of the illness, other hormone dysregulation issues, and the anxiety and fear of a recurrence which is based in absolute reality.

There are people, like myself, who are in remission from Cushing’s, BUT we now have Addison’s Disease/Adrenal Insufficiency as a result of removing vital organs in order to save our lives from Cushing’s. So, are we to think that Adrenal Insufficiency is ALSO our faults every time we near death after an adrenal crisis?! NO! NO! NO!

This is NOT your fault! This is NOT your doing! STOP blaming yourself! The best you can do is to FIGHT! Take an empowered stance by saying “NO” to those who won’t listen. Say “NO” to those who project blame onto you and tell you that this is just a “fat person’s excuse to stay fat”. You are not just a “fat person”! YOU are an amazing person who is fighting for your life!

Let me be clear that this blaming is common and we all do it. In my “5 stages of Loss” series on Youtube; I address the “Bargaining” stage of loss, in which we assume responsibility for getting sick or even for getting better.

Everyone should watch this to understand why and how we do this:

Remember, you are a survivor! YOU are Indomitable!!! This is NOT your fault! You WILL overcome!

Filed under: adrenal crisis, Cushing's, Myths and Facts, Treatments | Tagged: , , , , , , , , , | Leave a comment »

Interview May 7 with Kathy C, Pituitary Patient

Posted on May 6, 2014 by MaryO

My name is Kathy Casey. I am a 63 year old retired school nurse. I am married with two wonderful sons and a grandson. My husband and I live in the mountain town of Mt. Shasta in northern California. I have always been athletic.

In 1995, I was diagnosed with a pituitary tumor. At the time the only symptom I was aware of was a severe headache. I had a transphenoidal resection by Dr. Wilson at UCSF Medical Center followed by radiation therapy for 23 days. At the time they said they could not remove all of the tumor.

In 2008/2009. I exhibited symptoms of Cushing’s and my cortisol level was outrageous, and I had to be hospitalized initially for a potassium level of 2. I returned to UCSF and Dr. Anwar Sandeep operated . By removing part of the tumor. My Cushing symptoms resolved. However, he said that the tumor was not encapsulated and was invading the cavernous sinus and stella turcica so it was still not possible to remove it all.

I was OK until December 2013 when I began exhibiting the symptoms of Cushings. One of my 24 hr. urines was 14,000. I had to be hospitalized for a potassium level of 1.9. Dr. Heaney said he has never seen a cortisol level that high. This time I decided to go to the UCLA Pituitary Tumor and Endocrinology Program where they were more oriented to follow-up and treating this disorder. Dr. Bergsneider decided that surgery was not an option. He and Dr. Heaney decided radiation was not an option. So now I am being followed by Dr. Heaney to see if medication can help.

I am now on Cabergoline 0.5 mg three tabs twice a week and Signifor 0.9 mg subcutaneosly twice a day. I think they are alleviating some of the symptoms. However, the Signifor caused my blood sugar to rise, and I had to go on Metformin which is causing nausea to a point where I have a hard time eating.

Anyway, this whole situation is depressing and overwhelming. I am tryng to stay positive, but I wonder how it will turn out. I am fortunate to have a supportive and helpful husband.

I am interested in communicating with people who may be going through a similar experience and learning more about this rare condition.

Kathy will be interviewed May 7, 2014 in BlogTalkRadio

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Filed under: Cushing's, Interview, pituitary, podcast, Treatments | Tagged: , , , , , , , , , , , , , , , , , , , | Leave a comment »

Cushing’s Awareness Challenge: Day 12

Posted on April 12, 2014 by MaryO

robin-head

 

Mail!  I get all kinds of email asking questions about a variety of Cushing’s issues.  I’m not a doctor and I don’t play one on TV.  I don’t even play one on the internet.  People are desperate for answers, though, so the questions keep coming and I try to answer the best I can.

Here’s a recent question and answer.  Note that you have to be logged into the message boards to view the links in this post.

 

Question: My daughter was diagnosed w/ cushings in 2001 at the age of 20 & had the pituitary surgery.

In late 2013 she was diagnosed with a recurrence. I’ve read that that usually happens within 5 years, not a dozen years.

Regardless, there is a new research program but she was told she doesn’t qualify for it. The other medications offered are either exhorbitant ($100-200,000/year), another causes liver damage, another causes uterine problems. A 2nd surgery is not recommended according to  the surgeon (because there would be only a 50% rate of success due to the scar tissue from the original surgery), and radiation is being vetoed as well, being recommended ONLY as a very last possible resort.

Are there other parents who chat & share experience here? Will I find help as a parent here with my frustration over this disease? Are there other patients who communicate here that are from Michigan?  Are there other patients here who are suffering from the recurrence? Don’t get me wrong, I’m happy to find on several sites online today that there are so many success stories; I would just like to know what other options there are that perhaps our Dr. is missing.  Thanks.

My response:

S, since you have a Board Name, I assume that you are a member of the message boards.

There are areas specifically for recurrence – http://cushings.invisionzone.com/index.php?/forum/35-recurrences/

People in Michigan: http://cushings.invisionzone.com/index.php?/topic/13696-michigan/

Parents of patients: http://cushings.invisionzone.com/index.php?/forum/31-parents-spouses-children-and-friends-of-patients/

The more you read, the more you will learn.  Many patients with a recurrence  have a second pituitary surgery.  She might need to get another opinion from another surgeon.

Another option is a BLA – or have her adrenal glands out.  That can cause other issues, though.

The 2 drugs you  mentioned are Signifor and Korlym.  Although both are expensive, each has a patient assistance plan which lowers the cost dramatically.  Doses can vary dramatically so that they don’t necessarily cause liver or uterine issues.

Ketoconazole is another drug that’s sometimes used.

I did a search on the boards and there are 69 topics for Mifepristone (generic Korlym), 51 topics discussing the brand name Korlym, 40 for pasireotide (generic Signifor), 13 for the brand name Signifor, and 69 for keto (the common abbreviation on the boards for ketoconazole)

Here’s a personal experience from a woman on Korlym who likes it: http://cushings.invisionzone.com/index.php?/topic/53342-i-like-korlym/?hl=korlym

So – the information is out there.

I know it’s hard to process all this and make decisions.

I know it’s hard to process all this and make decisions. I had my one pituitary surgery in 1987, before the Internet was available so I had to really research all this in medical texts.

At that time, there weren’t any drug options. Just surgery and radiation. I decided off the bat if I should have a recurrence, I would not do radiation. I’d go for another pituitary surgery first, then a BLA if needed.

But that was then and this is now.  There is way more information which is much easier to find.  There are better surgical options and even some more medical ones.

Good luck!

8e1d2-maryo_colorful_zebra

Filed under: Cushing's, pituitary, Treatments | Tagged: , , , , , , , , , , , , , , , , , , , , , | Leave a comment »

Researchers at Department of Endocrinology and Diabetes Release New Data on Cushing Syndrome

Posted on September 19, 2013 by MaryO

By a News Reporter-Staff News Editor at Biotech Week — Research findings on Adrenal Gland Diseases are discussed in a new report. According to news reporting originating from Melbourne, Australia, by NewsRx correspondents, research stated, “Stereotactic radiation therapy has emerged as an alternative to conventional radiotherapy for treatment of Cushing disease. The aim of this study was to investigate the efficacy and safety of this treatment.”

Our news editors obtained a quote from the research from the Department of Endocrinology and Diabetes, “Records of patients with Cushing disease treated with stereotactic radiation were reviewed. Seventeen patients underwent stereotactic radiosurgery.”

According to the news editors, the research concluded: “Ten achieved remission after a mean of 23 (95% confidence interval, 15-31) months, and two developed hormone deficiencies.”

For more information on this research see: Stereotactic radiosurgery for treatment of Cushing disease: an Australian experience. Internal Medicine Journal, 2012;42(10):1153-6. (Wiley-Blackwell – www.wiley.com/; Internal Medicine Journal – onlinelibrary.wiley.com/journal/10.1111/(ISSN)1445-5994)

The news editors report that additional information may be obtained by contacting L. Wein, Dept. of Endocrinology and Diabetes, Alfred Hospital, Melbourne, Victoria, Australia. Additional authors for this research include M. Dally and L.A Bach (see also Adrenal Gland Diseases).

Keywords for this news article include: Melbourne, Treatment, Radiotherapy, Radiation Therapy, Cushing’s Syndrome, Adrenal Gland Diseases, Australia and New Zealand.

Our reports deliver fact-based news of research and discoveries from around the world. Copyright 2013, NewsRx LLC

From http://www.hispanicbusiness.com/2013/9/18/researchers_at_department_of_endocrinology_and.htm

Filed under: adrenal, Cushing's, Treatments | Tagged: , , , , , , , | 1 Comment »

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