Saturday, May 9, 2015

Another Year - Cancer Free!

cancer_free

NED stands for No Evidence of Disease

Amazing! It’s Been 9 Years, Already.

Today is the Ninth Anniversary of my kidney cancer surgery.  These nine years have been bonus years for me.  What were the odds I’d get kidney cancer? According to my “risk factors”, I “should” have had colon cancer because both parents and an aunt had it twice each.  Of course, there’s no guarantee that I won’t get that, too.

And the risk factors for kidney cancer aka renal cell carcinoma?  The majority of kidney cancers are renal cell carcinomas. Risk factors for renal cell carcinoma include:
  • Age. Your risk of renal cell carcinoma increases as you age. Renal cell carcinoma occurs most commonly in people 60 and older.
I was younger than this.
  • Sex. Men are more likely to develop renal cell carcinoma than women are.
I am female
  • Smoking. Smokers have a greater risk of renal cell carcinoma than nonsmokers do. The risk increases the longer you smoke and decreases after you quit.
Not me!
  • Obesity. People who are obese have a higher risk of renal cell carcinoma than do people who are considered average weight.
A Cushing’s gift
  • High blood pressure (hypertension). High blood pressure increases your risk of renal cell carcinoma, but it isn’t clear why. Some research in animals has linked high blood pressure medications to an increased risk of kidney cancer, but studies in people have had conflicting results.
Never had this until the kidney cancer.  It went away immediately post-op.
  • Chemicals in your workplace. Workers who are exposed to certain chemicals on the job may have a higher risk of renal cell carcinoma. People who work with chemicals such as asbestos, cadmium and trichloroethylene may have an increased risk of kidney cancer.
What?  Me work?.
  • Treatment for kidney failure. People who receive long-term dialysis to treat chronic kidney failure have a greater risk of developing kidney cancer. People who have a kidney transplant and receive immunosuppressant drugs also are more likely to develop kidney cancer.
Nope.  Some sites also list polycystic  kidney disease.  I don’t have that but half my husband’s family does.  Hmmm – wonder if that’s contagious
  • Von Hippel-Lindau disease. People with this inherited disorder are likely to develop several kinds of tumors, including, in some cases, renal cell carcinoma.
I’ve wondered about this but, you know, it’s too “rare”.
  • Hereditary papillary renal cell carcinoma. Having this inherited condition makes it more likely you’ll develop one or more renal cell carcinomas.
Not that I know of. 

I am so thankful for all my doctors but today I am thankful for Dr. Amir Al-Juburi who saved my life by removing my kidney cancer (renal cell carcinoma).

In 2006 I picked up my husband for a biopsy and took him to an outpatient surgical center. While I was there waiting for the biopsy to be completed, I started noticing blood in my urine and major abdominal cramps. I left messages for several of my doctors on what I should do. I finally decided to see my PCP after I got my husband home.

When Tom was done with his testing, his doctor took one look at me and asked if I wanted an ambulance. I said no, that I thought I could make it to the emergency room ok – Tom couldn’t drive because of the anaesthetic they had given him. I barely made it to the ER and left the car with Tom to park. Tom’s doctor followed us to the ER and became my new doctor.

When I was diagnosed in the ER with kidney cancer, Tom’s doctor said that he could do the surgery but that he would recommend someone even more experienced, Dr. Amir Al-Juburi.
Dr. Amir Al-Juburi has been so kind to me, almost like a kindly grandfather might be, and he got rid of all 10 pounds of my kidney and cancer.

I owe him, the original doctor, and my Cushing’s doctors, my life.


The following are extracted from posts that were made during my kidney cancer diagnosis and surgery in 2006:

From Alice April 29, 2006
This is Mary’s friend, Alice (Dearest of Power Surge).
I’m not going to go into every detail at this time. I will fill you in on more details as I receive them from Mary and Tom. I’m sure Mary posted on the boards that she recently went back to Johns Hopkins in Baltimore to be retested because the tests that had been done the past year were incorrect and she was getting the wrong dose of hGh for the past year. In any event, she was tested again on Thursday and then returned home. The above is just a preface to create a time frame of events. It isn’t the reason I’ve come here to ask for prayers for Mary.

This is: Mary mentioned to me last week that she had noticed some blood in her urine. She was going to get it checked. As it were, when she returned from Johns Hopkins, she drove her husband, Tom, to get his regular biopsy for his history of prostate cancer.

While in the emergency room, Mary started having cramps in her stomach and when she went to the rest room, discovered a great deal more blood in her urine. Fortunately, she was at the hospital with her husband when this occurred. The cramps were becoming more severe. The doctors checked her out and they found a tumor in one of her kidneys – the tumor is actually the size of the kidney.

At this point and time, the doctors are recommending removal of the kidney and one of her adrenal glands. One surgeon recommended immediate removal of the kidney. Mary and Tom wanted to first talk with her other doctors and will decide on what surgeon performs the surgery. She never left the hospital where she simply went to take Tom for his test. Instead, she was admitted. She had a great deal of pain last night, but it was helped with pain killers. I will provide hospital details later.

She’s scheduled for an MRI later this morning or early afternoon.

I don’t want to go into much more detail except to say that whatever the condition of the tumor, the prognosis is pretty good.

I know how much all of you love her (as I do), how much she’s done with this site, how hard she’s worked to provide you with so much wonderful information about Cushing’s — plus what a good friend she’s been to so many of you. I also know that those of you who talk to her may want to call her. She needs time to go through all the preliminaries before being inundated with calls.

I will do my best to keep you apprised of Mary’s situation as I receive information. When she gives me the go ahead for giving out the hospital and is ready to take calls, I’ll pass the information along.

Please take a moment to send prayers for {{{{{MaryO}}}}} (she’s “our” MaryO on Power Surge, too) that everything will turn out all right and she will get through this crisis with flying colors.
Dearest
~~~~~~~~~~~~~~~
From Alice April 30, 2006
* Addendum: 9:30 AM – made some corrections to the 5 something AM post.
What a beautiful show of love and support.

I spoke to Mary last night. She had the MRI as scheduled. She spoke with her own doctor and they decided on a surgeon, but it means going to another hospital. She said she’d probably be coming home for a day before going in for the surgery.

I hesitated to mention in my first post that the doctors said they * think the kidney tumor is malignant due to it’s size – 5 cm. I’m sure many of you surmised that, or why would the emergency room doctors recommend immediate surgery. However, as I said earlier, Mary and Tom wanted to consult with her own doctor first. She was told that if, in fact, it is kidney cancer and is detected and treated early and confined to the kidney, the chances for a full recovery are good.

Considering what she’s going through, Mary sounded good. Lord knows, she’s been through so much already. God willing, this may resolve some of the other health issues she’s been experiencing.

Knowing Mary, when she returns home for a day before checking into the other hospital for surgery, if she’s up to it, she’ll post here herself and provide you with additional details.
For now, I’ve told you just about all I know.

Keep up those prayers!
Alice
~~~~~~~~~~~~~~~~~~~~~~~~~~
From Alice April 30, 2006
11 AM Update:
Mary had a brain scan this morning. She was supposed to have a bone scan today as well, but they’re doing it tomorrow instead, so they told her she could GO HOME TODAY (until she checks into the other hospital for the surgery)! She’s thrilled to be going home and I’m sure she’ll be here posting to all of you herself. You know Mary can’t stay away from computers very long. I’d venture a guess that if they looked inside, her arteries and veins would look more like computer cables (ducking).

We love Mary – so keep on praying that everything goes well, that the tests all yield good results and that she’ll be getting better ‘n better until she’s finished with this whole ordeal
(please, God!)
Reminds me of the phrase . . .
Good, better, best
Never let it rest
Til the good is better
And the better, BEST!
Alice
~~~~~~~~~~~~~~~~~~~~~~~~~~
From Alice April 30, 2006
Update – 2:15 PM:
Spoke with Mary. She’s home. She’s resting. The brain scan, chest/lung x-ray, abdominal scan all came out clean. The only test remaining that I know of is the bone scan, but it’s excellent that the above tests yielded good results.

She’s going back to the hospital for the bone scan tomorrow and, hopefully, scheduled for surgery ASAP.

Her attitude is very good. She sounds very good and I know, with God watching over her, and everyone showing so much love and caring, she’ll pull through this with flying colors.
It’s easier for me in conveying information to you to do so with an upbeat attitude. I try to avoid thinking of these things as tragedies or things that make me sick. Of course, I’m saddened and sorry that Mary is going through this — and has gone through so much, but such is life. You all certainly know that very well. Nobody hands us a guarantee that life is going to be without problems. And, yes, as the Morton’s salt container says, It never rains, it pours. But my M.O. is to try to keep as positive as possible, especially when in the throes of life’s unanticipated crises.

I believe the expression, “Attitude” is half the battle won.

Mary’s attitude is excellent and I know in my heart she’s going to come through this just fine.
Alice

P.S. An expression I remember my mother using, “The things we fear never happen. It’s the things we never think about that do!”
~~~~~~~~~~~~~~~~~~~~~~~~~~
From Alice May 2, 2006
There wasn’t much to add yesterday. Mary was scheduled for a bone scan, but first had to have the radioactive tracer substance injection (I presume it was injected — she wasn’t sure herself). She was scheduled to have that around 10:30-11 AM, ET, and then had to return five hours later for the bone scan.

I didn’t speak with her last night, but she text messaged me around 6:30 that she was finally home and that the surgery had been scheduled for a week from today, Tuesday, May 9th at 9:30 AM.
I’ll post the hospital information as the time draws near.

That’s about it for now. She’s still sounding pretty good and wants to get the surgery done already!
Let’s keep those prayers going!
Alice
~~~~~~~~~~~~~~~~~~~~~~
From Me May 2, 2006
First off, I’d like to thank you all for your good wishes, support and prayers. I could do the Sally Field thing and say “…and I can’t deny the fact that you like me, right now, you like me!” but I won’t :)

I plan to print everything out and take it with me to the hospital as a cheery-upper.
Alice has been such a wonderful friend through all this, calling, checking up on me, keeping all of you updated on things as they are known right now. Her support and love has been such a wonderful blessing in my life, especially now.

As it is, I’m currently feeling “normal” whatever that is. If I didn’t know I had a problem, I would think that I was just fine.

I am fortunate that I found this out before the tumor could grow any larger. I am fortunate that I was close to the ER, not driving home from Baltimore, or in Baltimore, Oklahoma or on the cruise.

I know that the tumor has been growing for quite a while – it’s very large. I saw the MRI images and even I can tell that it’s not normal. As far as I know now, all the other scans have been fine. I had an abdomen CT, chest CT, brain MRI, chest/abdomen MRI and a full body bone scan.

When I was in the ER Friday, they assumed that it was a kidney stone and did the first abdomenal CT scan looking to see where that was. They came back with the news that yes, I had a kidney stone but that it was the least of my worries at them moment. So, I was admitted to the hospital and had all the other scans except the bone scan. Knowing what I know now, it would have been better and easier for me to have had the bone scan as an inpatient. As soon as I checked out and was out of the system, it was harder to get an “emergency” (not scheduled weeks in advance) bone scan. Oh, well.

My surgery will be next Tuesday, May 9, at 9:30AM at Fairfax Hospital (http://www.inova.org/inovapublic.srt/ifh/index.jsp ). I’m expected to stay there for 3-5 days post op and they don’t anticipate any pesky complications like chemo or radiation at this time.
For now, I’m keeping my normal schedule, avoiding reading horror stories online, eating, sleeping – even napping! – as usual. Sometimes I even forget that I have this little medical appointment next week.

For a non-phone person I’ve talked with so many people these last few days, it’s mind-boggling.

I’m happy to report that all is not lost on the (Cushie) cruise. Someone will replace me – and there will be another cruise later in the year. YEA! My main “concern” on that now is that I’ll lose weight (finally!) post-op and my cruisewear will no longer fit. Yeah, right.
In thinking back, I think it’s a good thing that my arginine test was messed up in Sept of 05. If it hadn’t been, I wouldn’t have redone it on Thursday. I believe that having that stuff in my body was what made my kidneys rebel and act up on Friday. So, without the lab screw-up I might not have known anything for a long time.

So, it’s all good

Thanks to everyone who has called and posted such wonderful things. I cannot begin to imagine what my email looks like…
~~~~~~~~~~~~~~~~~~~~
From Alice May 9, 2006, 09:10 AM
I’ve been in constant contact with Mary. Spoke to her at 7 this morning. She, Tom and their son, Michael, were on the way to the hospital. Mary sounded very good as she has all week. She’s going in with an excellent attitude.

She’s probably being prepped right now. The surgery is set for for 9:30 (ET). They anticipate the surgery will last 3 1/2 – 4 hours.

Now, all we can do is pray and wait. Tom will call me after the surgery is over. As soon as I hear something, I’ll make it a point to come back and post what I know.

Your support, love and prayers have been remarkable. Thank you on behalf of Mary. Please keep on praying until it’s over.

God? You listening? You’ve got someone very special to watch over this morning. We’re counting on you!
Alice
~~~~~~~~~~~~~~~~~~~
From Alice May 9, 2006, 12:33 PM
Mary’s husband, Tom, called me at 12:15

He said it’s going to be another 3 hours – around 3:15 PM – before they’re done. Surgery didn’t start as scheduled at 9:30, but more like 11:30. There wasn’t that much he could tell me except that the doctors said, so far everything is going as expected and Tom said, “so far, so good.”

I hesitate to draw any conclusions from that statement because I’m not 100% sure of what the doctors expected, so it’s a matter of waiting until it’s over.

I’ll keep you posted. Keep praying, please!
Alice
~~~~~~~~~~~~~~~~~~
From Alice May 9, 2006, 2:00PM
Tom called at 1:15, but we had a bad connection. We finally connected.

The operation is over. Mary was being sewn up. Tom said according to the doctor, “the tumor and the kidney were removed.” The doctor is calling the operation a “complete success.”
I asked if they saw any signs of cancer anywhere else because Mary had told me originally that they’d said they might remove the gall bladder, too, but they didn’t remove the gall bladder – which is a good sign.

It appears as though everything was concentrated in the kidney.
Thank God. It’s over!
Alice
~~~~~~~~~~~~~~~~~~~~~~~~
From Alice May 9 2006, 07:39 PM
Someone said: “… I told her that I would wait until she was home and feeling much better before I talked to her again and she agreed that she wasn’t sure she would be up to taking phone calls. Again, thank you so much for keeping us updated… this way we can know how Mary is doing without her having to take so many calls…”

That’s exactly how Tom and I feel. Tom suggests people not call the hospital. I wouldn’t even call his cell phone all day. I waited for him to contact me. I know he’s also exhausted. I figured he’d call when he was up to it. He called about 15 minutes ago.

It’s important that Mary get all the rest she can while recovering. Yes, everything turned out well, but she still had major surgery, is on morphine and needs her sleep. It’s important that we all allow her this time to rest.

It just so happened she was awake when he called and he turned on his cell phone’s speakerphone so Mary and I could talk for a minute. I was so happy to hear her voice. She sounded tired, her mouth was dry, but she sounded good.

Because this is a public message board, I prefer not to post details of the room she’s in. If anyone wants this information for the purpose of sending something to Mary, please E.mail me from the address you registered with on the board, and please include your user name. Thanks.

Another thing is that Mary has allergies, so for those wishing to send something to her, Tom and I (and Mary, as we discussed before she went into the hospital) agree she’s better off without flowers.

Finally, Tom said the doctor was very pleased with how her surgery went – that her body was quite robust, that there was very little bleeding, so no transfusion was needed, and he was generally very pleased with the surgery.

It’s been a very stressful day. I love Mary like a sister. We’ve been good friends for 11 years. I cried so after he initially called and said everything went well. I know all of you love and care about Mary, too.

All I’ve thought all day is, thank you, God, for watching over MaryO. I know all of you have thought the same thing.

That’s about it for now — she even cracked a personal joke when we said goodbye — she’ll be back to her old self again before too long.
Alice
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
From Alice May 13 2006, 08:10 PM
Saturday Update on Mary:
When she’s back on her computer, I know Mary will be thrilled to read all your thoughtful, beautiful and caring messages.

She’s doing well. The worst part is the incision which is quite large because the doctors originally anticipated the possibility of having to remove the adrenal gland above the kidney that was removed and the gall bladder as well. However, as I posted earlier, once they got in there, everything was found to be clean so they just took out the tumor and the kidney (as if that’s not enough). So, when she gets up to go to the bathroom, the incision is quite painful. I imagine an incision of that size will take a while to heal. Other than that she says she feels good!!

Additionally, the doctor was awaiting the results of the lymph node biopsy (just to be sure) and he told her yesterday, “everything looks clean.”

She was originally scheduled to go home tomorrow, Sunday, but . . . she went home TODAY!
Spoke to her after she arrived home (sorry I didn’t post earlier, but also have my Web site to deal with).

She sounded great and was glad to be home especially since a new person checked into her room yesterday and Mary wasn’t able to sleep all night.

That’s all for now – and all very good news, thank God!
Alice
~~~~~~~~~~~~~~~~~~~~~~~~~
From Me: June 17, 2006 post-op:
Thank you all for your prayers, good wishes, cards, phone calls, gifts, general “cheery-uppers”. They all really helped me on my road to recovery.

I do have a ton of thank you cards to send out to lots of people – I’m very slow at that. Under normal circumstances my handwriting is terrible. Now, post-op kidney cancer, I can no longer take my arthritis meds or any NSAIDs and my writing will probably be even worse sad.gif
I am very nearly better, not much pain anymore, a nasty big scar and my energy levels aren’t so great. Of course, they were awful before. I can no longer take the GH even though I’m deficient. In 5 years (if I survive!) I can take the GH again, supposedly.

I’ve had a lot of time to do a lot of thinking over the last 6 weeks. I know I was extraordinarily lucky to have my tumor discovered before it was too late. The lab reports and my surgeon reported that it would only have been a week or so before the tumor had hemorrhaged and caused major problems. Thank goodness the argenine retest for GH had caused me to bleed – at least I think that’s what set it off. If I hadn’t had all the blood and pain for one day only, I’d have had no clue that I had this cancer and who knows what would have happened in that next week.

I will be getting CT scans every 3 months for awhile to be sure that there is no cancer hiding out.

During my time of thinking, I have also been thinking about making changes to the boards based on what I have heard was going on here. I am not yet sure how these changes will manifest themselves but I do know that bashing others will not be tolerated. More on this later, in another area.

Again, thank you for all your support!
~~~~~~~~~~~~~~~~~~~
From Me July 6, 2006
Since I recently had surgery for kidney cancer, I’ve been looking around for another board to read and talk about this with other survivors (hopefully!) I haven’t found anyplace I’d like to visit or feel comfortable with yet, so I decided to make a new area here.

I know – or I think I know – that no one else here has had kidney cancer, although I know at least 1 other person has had a kidney removed and several others have reported kidney stones and other possible kidney diseases.

I’m sure that my recovery will be much the same as for any other major abdominal surgery, although I’d like it to be faster.

Before my surgery, I didn’t have time really to consider that I had cancer, and what it meant for my life. There was no going from doctor to doctor, running a different test each week, suspecting that maybe… Just boom, there it is. Cancer.

Now that I’m about 8 weeks post-op, I’m thinking more and more about this and how it might affect my future. I know that there are going to be lots of scans, every 3 months, just to be sure that there wasn’t a cell hiding out.

I know I have to be careful with meds – no NSAIDs so my arthritis is worse. No GH – it’s contraindicated for 5 years…assuming I’m cancer free then.

I’m supposed to be eating less protein, more fruits/veggies, drinking more water.

And I’m supposed to avoid playing football and other things that might damage my remaining kidney.

Normally, I know how very lucky I am. I just reread the path reports and know that the tumor was already hemorrhaging around the borders and the cysts contained hemorrhagic fluid. Things could be much worse.

Sometimes, at night when I can’t sleep, I wonder why I was lucky like this. What haven’t I done with my life that I should. Seems to me that I’ve accomplished what I should already.
And, in the night, I worry about the cancer returning, taking my other kidney or worse.

At this time, there’s no standard chemo unless it’s metastasized, although there are some promising clinical trials and radiation doesn’t seem to work for this kind of cancer, so if it returns it’s more surgery.

I suppose I could/should have put all this in my blog, but I put it out here in case anyone else should need this in the future. I hope not!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
From me Aug 19 2006, 01:25 AM
Thanks so much for asking!

Unfortunately, I haven’t read the boards much lately – I’m spending most of my online time deleting/banning the InstaChat intruders.

I have been working on the websites, though, and that’s always fun! I’ve even added a new one to the roster and it has some cool stuff on it. New features to be announced in the upcoming newsletter.

I’ve been even more tired than usual now that I’m off GH. I can’t take my arthritis meds, or anything like Excedrin (no NSAIDs) so my joints are nearly always bothering me and I have to wait out any headaches. I’m also just getting over a UTI.

I just had my 3 month post-op CT scans and I hope they come out ok. At first I was grateful that I wouldn’t have to have chemo or radiation come to find out that neither has been discovered yet which works well with kidney cancer. Apparently, it can resurface any time for the rest of my life. I’m hoping that some of the chemo clinical trials show some good results so I can get this thing before it metastasizes somewhere.

I’m having trouble sleeping (1:20 AM here, now) although I’m always tired. My mind plays all kinds of tricks in the night. Those InstaChat people don’t help, either! When I wake up just a little, instead of falling back asleep, I’ll go check to see what they’ve done.

Whine, whine!

On the plus side – I survived the kidney cancer surgery, and it’s almost vacation time!
Even vacation will be bittersweet, though. 2 years ago, Sue went with us on vacation. She had a great time and she had asked if she could go with us again this year. Of course, we had said yes…
~~~~~~~~~~~~~~~~~~~~~~~
From me May 8 2008, 11:07 PM
I am feeling very maudlin, a bit down and depressed. It’s very nearly the anniversary of my kidney cancer surgery. I posted this in my blog a few days ago:
I’ve been feeling weird for about a week now. Last Friday, I went through the whole “Sending Prayers” topic (MKO’Note: this thread) that my good friend Alice started for me.After I read that, I started reliving all the kidney cancer events…again. I know I shouldn’t do this. My counselor says that this is a very stressful thing to do and it’s not good for me, for anyone. But I do it anyway, especially the pituitary and cancer surgery anniversaries. I wish I did this with good stuff, could relive that instead of the scary and painful.

After I finished rereading all that, I went back to my post in the cancer section: I guess I’ve talked about this more than I think! I just wish there was someone I could get answers and support from. I have never met anyone in real life who has shared my particular brand of cancer, haven’t talked to anyone on the phone or emailed anyone.
I even asked at my local cancer support center about support for me – they have all kinds of meetings, mainly for breast and prostate cancer, but other kinds, too. But they said that there weren’t enough kidney cancer people to have a meeting. The one and only book that the library there has on kidney cancer was given to me by the author to donate there.

Lucky me – two rare diseases that no one gets. According to statistics I should be a black man who smokes and works in the iron and steel industry or is exposed to certain chemical and substances, such as asbestos (a mineral fiber that can be used in construction materials for insulation and as fire-retardant) and cadmium (a rare, soft, bluish-white chemical element used in batteries and plastic industry), also increase the risk for renal cell carcinoma. I should have polycystic kidneys and not drink the copious coffee.

So…where did it come from? A mutation of my parents’ and aunt’s colon cancer or do I still have that looming on my horizon?

And the Cushing’s came from nowhere, too. I know that no one knows these answers but I think of them a lot, especially at night.

Although I’m not afraid of death and would like it to be as peaceful and pain-free as possible, I still dream at night that I’m dying or have died. These dreams have been going on since before the cancer and I can’t seem to shake them although I’m taking them more in stride now and can go right back to sleep.

And from last year’s post on this topic, these still concern me:

What if the lung nodules that “aren’t growing” turn out to be something on the next scan? Is the stomach distress I’m currently feeling a cause to ask for my next colonoscopy a bit earlier?

Is the pain on the other side the other kidney causing trouble? Or something new with an ovary?

What if, what if…?

Seems like in my addled brain any new symptom could be cancer, not the simple stomach bug or pulled muscle.

Had they told me in 2006 that I only had a year or two to live, I’d have thought it far too short a time. I guess how long a year is depends on the frame of mind!

I hate going for scans because they could show something but I get nervous when there are no scans because there could be something else! Seems like my mind is setting me up for a lose-lose situation.

I’m sure as I get closer to Friday that other thoughts will come to me. I am so grateful that I’ve had these two “bonus years”. I feel like there is so much still to do with the Cushing’s sites and I will never get them done in my lifetime but I plan to keep trucking along!

And from Wonderful Words of Life…
I’m acquiring the title of an old hymn for this next post.

After I was finished with the long Cushing’s diagnostic process, surgery and several post-op visits to NIH, I was asked to give the scripture reading at my church. The man who did the sermon that week was the survivor of a horrific accident where he and his family were hit by a van while waiting at an airport.

i thought I had written down the verse carefully. I practiced and practiced, I don’t like speaking in front of a crowd but I said I would. When I got to church, the verse was different. Maybe I wrote it down wrong, maybe someone changed it. Whatever.

This verse has come to have so much meaning in my life. When I saw at a book called A Musician’s Book of Psalms each day had a different psalm. On my birthday, there was “my” psalm so I had to buy this book!

Psalm 116 (New International Version)
1 I love the LORD, for he heard my voice;
he heard my cry for mercy.
2 Because he turned his ear to me,
I will call on him as long as I live.
3 The cords of death entangled me,
the anguish of the grave came upon me;
I was overcome by trouble and sorrow.
4 Then I called on the name of the LORD:
“O LORD, save me!”
5 The LORD is gracious and righteous;
our God is full of compassion.
6 The LORD protects the simplehearted;
when I was in great need, he saved me.
7 Be at rest once more, O my soul,
for the LORD has been good to you.
8 For you, O LORD, have delivered my soul from death,
my eyes from tears,
my feet from stumbling,
9 that I may walk before the LORD
in the land of the living.
10 I believed; therefore I said,
“I am greatly afflicted.”
11 And in my dismay I said,
“All men are liars.”
12 How can I repay the LORD
for all his goodness to me?
13 I will lift up the cup of salvation
and call on the name of the LORD.
14 I will fulfill my vows to the LORD
in the presence of all his people.
15 Precious in the sight of the LORD
is the death of his saints.
16 O LORD, truly I am your servant;
I am your servant, the son of your maidservant;
you have freed me from my chains.
17 I will sacrifice a thank offering to you
and call on the name of the LORD.
18 I will fulfill my vows to the LORD
in the presence of all his people,
19 in the courts of the house of the LORD—
in your midst, O Jerusalem.
Praise the LORD.
I carry a print out of this everywhere I go because I find it very soothing. “when I was in great need, he saved me.” This print out is in a plastic page saver. On the other side there is an article I found after my kidney cancer. I first read this in Chicken Soup for the Surviving Soul and is posted several places online.

The Best Day Of My Lifeby Gregory M Lousignont

Today, when I awoke, I suddenly realized that this is the best day of my life, ever! There were times when I wondered if I would make it to today; but I did! And because I did I’m going to celebrate!

Today, I’m going to celebrate what an unbelievable life I have had so far: the accomplishments, the many blessings, and, yes, even the hardships because they have served to make me stronger.

I will go through this day with my head held high, and a happy heart. I will marvel at God’s seemingly simple gifts: the morning dew, the sun, the clouds, the trees, the flowers, the birds. Today, none of these miraculous creations will escape my notice.

Today, I will share my excitement for life with other people. I’ll make someone smile. I’ll go out of my way to perform an unexpected act of kindness for someone I don’t even know.
Today, I’ll give a sincere compliment to someone who seems down. I’ll tell a child how special he is, and I’ll tell someone I love just how deeply I care for her and how much she means to me.

Today is the day I quit worrying about what I don’t have and start being grateful for all the wonderful things God has already given me.

I’ll remember that to worry is just a waste of time because my faith in God and his Divine Plan ensures everything will be just fine.

And tonight, before I go to bed, I’ll go outside and raise my eyes to the heavens. I will stand in awe at the beauty of the stars and the moon, and I will praise God for these magnificent treasures.

As the day ends and I lay my head down on my pillow, I will thank the Almighty for the best day of my life. And I will sleep the sleep of a contented child, excited with expectation because know tomorrow is going to be the best day of my life, ever!
When I’m feeling down, depressed or low, reading my 2 special pages can help me more than anything else.

Monday, April 20, 2015

Less of Me: Movie Monday

Less of Me: Movie Monday: Hello All-- I have been told that there was a great National Geographic special on Cushing's Syndrome, and I wish I could find the who...

Muskeg Farm : Testing for Cushing's, 17 ohc/17 ohs

Muskeg Farm : Testing for Cushing's, 17 ohc/17 ohs: 24 hour 17-hydroxycorticosteroids (17 ohc/17ohs) is a test that used to be the gold standard back before my time, was all-but thrown out whe...

Interview with Stephanie (Steph), PCOS/Possible Cushing's Patient

interview
The next interview on BlogTalk Radio will be Wednesday, April 22 at 6:00 PM eastern.  The Call-In number for questions or comments is (657) 383-0416.


The archived interview will be available after 7:00 PM Eastern through iTunes Podcasts (Cushie Chats) or BlogTalkRadio.  While you're waiting, there are currently 82 other past interviews to listen to!

In her bio, Steph writes:
Hi. My name Steph, and this has been a long journey for me so far, and I see a long road ahead. Hopefully their will be a rainbow once all these clouds have melted away.

I just turned 33 years old (this month) and have been dealing with symptoms of Cushing’s since I was a pre-teen without even knowing it. I was diagnosed (or possibly mis-diagnosed) with PCOS when I was about 11. That’s when the irregular (to almost non-existent) menstrual cycles, hirutism (chin, upper lip, upper and lower thighs, fingers, toes, basically everywhere) and weight problems began. I was immediately put on birth control to regulate my periods, which only made my life a living nightmare. They forced on a fake (non-ovulating) period and made my moods a disaster. I went on to be on birth control until from the age of 11 until about 3 years ago when I just couldn’t take it anymore, and took myself off. I’ve been using herbal supplements for menstrual regulalation since then, and feel MUCH better.

Over the years I’ve always felt like there was something “more than PCOS” wrong with me. From the extreme inability to lose weight normally, and the ease to gain it, to the weak legs, vitamen d insuffeciency, high cholesterol, high blood pressure, extreme irritability, now non-existent cycle, shortness of breath (just from walking up 1 flight of stairs), slow healing, hoarse voice, high testosterone, male pattern baldness, blurry vision, EXTREME brain fog etc….. It has been very, very, very tough and emotional over the years. It has taken a toll on my personality, emotions, and those around me….

The way that I found out about cushing’s is rather unique. I was on a popular PCOS message board site called “soul cysters”, and I have always been EXTREMELY self conscience of my round puffy face, and was wondering if it could be a side effect of PCOS. So I searched Puffy face on the message board to see if others on the board had experienced it, and sure enough Cushing’s came up, and a suprising number of women either had both (cushing’s and PCOS) or had been mis-diagnosed, which apparently is very common with cushing’s. it was like a gigantic light bulb went off in my head when I started googling cushings symptoms. All these things that I have been experiencing almost my entire life started coming together. I’m really not crazy!! Everything is possibly related. Im almost 100% sure that this is it!!! I don’t know if this is a good or bad thing, as I see that cushing’s is curable in most cases, but it is also scary, and diagnosing it seems like hell!!

I have began my -already slow- journey to diagnosis. And, the the Dr.’s don’t seem to be all that well informed. However, I am DETERMINED. I am excited at the thought of possibly being able to get my life back through surgery or meds. I went to a well respected Endo in my area, and she is gonna test all of my hormones, including my cortisol level. Though she didn’t seem to be too informed on Cushing’s when I brought it up, along with my “dead ringer” symptoms. I’m going to a pulmonologist on the 29th as suggested by my GP (who also thinks I have cushings, but admits he’s not well informed enough or equipped to diagnose). I’m also going to an OBGYN soon (tried going to one today, and had to walk out because it was such a bad experience). But I am determined to get 2nd, 3rd, and however many opinions are needed until I am satisfied.

Also, on a side note, possibly having cushing’s, along with having PCOS, has made me look at the doctors and the medical profession as a whole in a different light. I feel like if you find a genuinely good doctor who listens, cares, takes you seriously, and is willing to test you without question, and work with you, your levels, and your symptoms, you are blessed!! I have had so many doctors try to push meds down my throat (for their own pockets/greed obviously) when it wasn’t needed or necessary without hesitation or question. And, then when I tell them that the medicine is affecting me adversely, they just tell me to keep taking it! It’s sad and ridiculous. I’ve had to learn to do my own research, know my own body well, and trust my own judgement…..

I will be praying for myself and everyone on this message board who has had to deal with this horrific symptoms over the years.

Updates coming…..

Tuesday, March 3, 2015

Cushing's Awareness Challenge, 2015

awareness
The Cushing's Awareness Challenge is almost upon us again!

Do you blog? Want to get started?

Since April 8 is Cushing's Awareness Day, several people got their heads together to create the Fourth Annual Cushing's Awareness Blogging Challenge.

All you have to do is blog about something Cushing's related for the 30 days of April.

There will also be a logo for your blog to show show you've participated.

Please let me know the URL to your blog in the comments area of this post or an email and I will list it on CushieBloggers ( http://cushie-blogger.blogspot.com/)

The more people who participate, the more the word will get out about Cushing's.

Suggested topics - or add your own!
  • In what ways have Cushing's made you a better person?
  • What have you learned about the medical community since you have become sick?
  • If you had one chance to speak to an endocrinologist association meeting, what would you tell them about Cushing's patients?
  • What would you tell the friends and family of another Cushing's patient in order to garner more emotional support for your friend? challenge with Cushing's? How have you overcome challenges? Stuff like that.
  • I have Cushing's Disease....(personal synopsis)
  • How I found out I have Cushing's
  • What is Cushing's Disease/Syndrome? (Personal variation, i.e. adrenal or pituitary or ectopic, etc.)
  • My challenges with Cushing's
  • Overcoming challenges with Cushing's (could include any challenges)
  • If I could speak to an endocrinologist organization, I would tell them....
  • What would I tell others trying to be diagnosed?
  • What would I tell families of those who are sick with Cushing's?
  • Treatments I've gone through to try to be cured/treatments I may have to go through to be cured.
  • What will happen if I'm not cured?
  • I write about my health because…
  • 10 Things I Couldn’t Live Without.
  • My Dream Day.
  • What I learned the hard way
  • Miracle Cure. (Write a news-style article on a miracle cure. What’s the cure? How do you get the cure? Be sure to include a disclaimer)
  • Health Madlib Poem. Go to : http://languageisavirus.com/cgi-bin/madlibs.pl#.VPGZQlPF9A8 and fill in the parts of speech and the site will generate a poem for you.
  • The Things We Forget. Visit http://thingsweforget.blogspot.com/ and make your own version of a short memo reminder. Where would you post it?
  • Give yourself, your condition, or your health focus a mascot. Is it a real person? Fictional? Mythical being? Describe them. Bonus points if you provide a visual!
  • 5 Challenges & 5 Small Victories.
  • The First Time I…
  • Make a word cloud or tree with a list of words that come to mind when you think about your blog, health, or interests. Use a thesaurus to make it branch more.
  • How much money have you spent on Cushing's, or, How did Cushing's impact your life financially?
  • Why do you think Cushing's may not be as rare as doctors believe?
  • What is your theory about what causes Cushing's?
  • How has Cushing's altered the trajectory of your life? What would you have done? Who would you have been
  • What three things has Cushing's stolen from you? What do you miss the most? What can you do in your Cushing's life to still achieve any of those goals?
  • What new goals did Cushing's bring to you?
  • How do you cope?
  • What do you do to improve your quality of life as you fight Cushing's?
  • How Cushing's affects children and their families
  • Your thoughts...?

Saturday, December 13, 2014

Myth: After a “cure” for Cushing’s, everyone heals and goes back to normal.

Myth: After a “cure” for Cushing’s, everyone heals and goes back to normal. All Cushing’s patients can easily heal with no repercussions after Cushing’s. After pituitary surgery or a Bilateral Adrenalectomy (BLA), life is great and being “cured” means having a “normal” life! After all, surgery is a “cure” and about 6 weeks later, you are back to normal. “Say, you had surgery XYZ long ago! Shouldn’t you be better by now?!!!!”


Fact: I can not even tell you how many people asked me “aren’t you better yet?!” after both of my surgeries! There are too many to count! There is a misperception that surgery means a cure and therefore, healing should happen magically and quickly. No! No! No! This is far from the truth.


The sad reality is that even some medical doctors buy into this myth and expect quick healing in their patients. However, they are not living in their patients bodies nor have they obviously read the extensive research on this. Research has shown that the healing process after surgery is a long and extensive one. One endocrinologist, expert from Northwestern, even referred to the first year after pituitary surgery for patients as “the year from hell”! He literally quoted that on a slide presentation.


It takes at least one year after pituitary surgery, for instance, to even manage hormones effectively. Surgery is invasive and hard. However, the hardest part comes AFTER surgery. This is when the body is compensating for all of the years of hormonal dysregulation and the patient is trying to get his/her levels back to normal.


There is a higher rate of recurrence of Cushing’s then we once thought. This means that after a patient has achieved remission from this illness, it is likely to come back. In these cases, a patient faces other treatments that may include radiation, the same type of surgery, or an alternative surgery.


For many pituitary patients who experience multiple recurrences, the last resort is to attack the source by removing both adrenal glands. This procedure is known as a Bilateral Adrenalectomy or BLA. In these cases, it is said that the patient “trades one disease for another”, now becoming adrenally insufficient and having Addison’s Disease. Both Pituitary and Adrenal patients are faced with a lifetime of either Secondary or Primary Adrenal Insufficiency.


Adrenal Insufficiency is also life threatening and adrenal crises can potentially lead to death. Additionally, research says that BLA patients take, on average, 3-5 years for their bodies to readjust and get anywhere near “normal”. Most patients will tell you that they never feel “normal” again!


Think of these facts the next time you feel tempted to ask your friend, family, or loved one, “why is it taking so long to get better after surgery?”. Remember that in addition to the aforementioned points; problems from Cushing’s can linger for years after surgery! One Cushing’s patient stated, “I’m 5 years post-op and I STILL have problems!” This mirrors the sentiments of many of us in the Cushing’s community. Please be conscious of this when supporting your loved one after treatment.


You can find more information in the following links:


http://ift.tt/1snDOl4


http://ift.tt/12J75dE


http://ift.tt/1snDOBo


This is another article that validates the aforementioned fact about the “cure myth”: http://ift.tt/12J735B




Thursday, December 11, 2014

Mutations Drive Unrestrained Secretion

Myth: “All types of Cushing’s are the same”

Myth: “All types of Cushing’s are the same”


Fact: In the words of our dear friend and advocate, Robin Ess, “There are many genetic varieties with quite a few discovered in the past couple of years. Plus, there are several types such as adrenal, ectopic, and pituitary. And so on”….Amazingly, some doctors do not realize that there are different varieties of Cushing’s and that the symptoms can come from a different source.


For instance, a doctor might rule out a pituitary tumor and completely dismiss the patient, even with biochemical evidence of Cushing’s. That doctor, instead of dismissing the patient, should thoroughly look for other potential sources, such as an adrenal tumor, or yet another source. Did you know that tumors on one’s lungs can even cause Cushing’s? Most people don’t know that.


For more information about the different types of Cushing’s, please read: http://ift.tt/1Gh6Wgj


Another great article regarding ectopic Cushing’s can be found here: http://ift.tt/1yCFOYh


MaryONote: Folks might be interested in listening to this podcast episode with Jayne, a Cushing’s patient who had pituitary surgeries and a bilateral adrenalectomy before finding the true source of her ectopic Cushing’s – lung tumors.


http://ift.tt/1yCFQiB




Wednesday, December 10, 2014

Cushings Syndrome/Disease can be healed or cured through change in diet or exercise

Myth: Cushing’s Syndrome/Disease can be healed or cured through change in diet or exercise.


myth-busted


Fact: NO! Caloric intake or lack of exercise has NO impact on weight gain and/ or loss in persons with Cushing’s.


Saying that someone “cheated” on their diet may seem reasonable to some as a reason for weight gain but I assure you that a candy bar or a piece of pie does not make a person with Cushing’s gain weight or get sick. Excess cortisol is the reason for Cushing’s symptoms. Treating the disease is the only way to alleviate symptoms.


The first line of treatment with the highest rate of remission is currently surgery to remove the tumor (s) from the pituitary, adrenal gland, or ectopic source.




Monday, December 8, 2014

Myth: YOU are the problem and the reason for your cortisol levels…

Myth: YOU are the problem and the reason for your cortisol levels. Having issues with too much or too little cortisol, the stress hormone, means that YOU are stressing too much or are too anxious. “YOU could control your levels if you would JUST calm down!”


Fact: YOU are NOT the problem! The dysfunction in your body is the problem. It is true that cortisol is your stress hormone or fight or flight hormone. This hormone helps your body compensate for and deal with trauma or stress, both physical and emotional. So, yes, your body does have a reaction to stress.

However, for people with Cushing’s, that hormone goes haywire. Too much cortisol leads to Cushing’s symptoms and having too little cortisol leads to Adrenal Insufficiency. Normally, our bodies’ response to stress is to pump out 10X the amount of your baseline cortisol to cope. If it is not able to do this, it will go into shock and can lead to death unless the emergency protocol is followed with an emergency injection of steroid. No amount of coping skills can “control” one’s physiological response to stress.



Friday, December 5, 2014

#1 ~ Cushing’s Myths and Facts

Myth: “Cushing’s is RARE”, “No one has Cushing’s!”, “It is literally impossible for you to have Cushing’s Disease!”


myth-busted


Fact: We have all been guilty of referring to Cushing’s as a “Rare” disease. I*, myself, say this all the time. In fact, the statistics state that only about 2 in every million people are afflicted with this disease. However, these are documented cases.


In reality, Cushing’s is not as rare as we once thought. The fact is that Cushing’s is just rarely diagnosed! Non experts tend to not test accurately and adequately for Cushing’s.


With an inappropriate protocol for testing, the prevalence of accurate diagnoses decreases. Cushing’s experts DO understand how extensive and difficult the diagnostic process is, so they tend to be more deliberate and thorough when exploring possible Cushing’s in their patients. Cushing’s patients who cycle also have to be more persistent in asking for adequate testing so that they are appropriately diagnosed.


The following video is an accurate portrayal of what many patients experience when trying to get help for their symptoms:



Please review the following links:

http://ift.tt/1q1KRhU

http://ift.tt/1tRjDGY


* Dr. Karen Ternier Thames




Saturday, November 15, 2014

Research Study: An Open Label Study to Assess the Safety and Efficacy of COR-003 (2S, 4R-ketoconazole) in the Treatment of Endogenous Cushing’s Syndrome

Objectives:         
The purpose of this study is to test the effects of different doses of COR-003 on people with Cushing’s syndrome (CS) primarily by measuring the cortisol levels in urine and secondarily by measuring other health parameters such as blood pressure, weight, and liver function. This study is also being conducted to see if there is any harm caused when using COR-003.
This study is an open label study. That means both the health providers and the participants in the study are aware of the drug or treatment being given.
Eligibility:
Adult Subjects (18 years or older) with elevated levels of cortisol due to endogenous CS.
Confirmed diagnosis of persistent or recurrent CS (with or without therapy) or newly diagnosed disease, if subjects are not candidates for surgery. CS will be defined according to the criteria in the guidelines for diagnosis of CS (Nieman 2008).
Women who are pregnant or lactating are not eligible for this study.
Individuals with other health conditions or diagnoses may not be eligible for this study.
These and other eligibility criteria are best reviewed with a doctor who is participating in the study. You can also get more detailed eligibility information about the study by clicking here to visithttp://www.clinicaltrials.gov.
Study Design:
  • The study will begin with a screening period to make sure subjects are eligible to participate in the study.
  • After the screening period, subjects who are eligible for participation will each be given several different doses of COR-003, to be taken orally in tablet form.
  • After an individualized dose has been selected, participants will take COR-003 for six months.
  • Finally, participants will continue in the study for an additional six months at doses to be determined by the study doctor.

Throughout the study, participants will meet regularly with a study doctor and will take part in a variety of medical tests to make sure they are doing well and to see if COR-003 is working.
Participants in the study should be sure they have the time to participate. Participants will generally be followed for over a year:
Study Locations
The study is currently taking place in several places around the world (United States, Belgium, France, Israel, Netherlands, Spain, and Sweden).
Additional information on the study can be found at clinicaltrials.gov throughthis link.
Study sponsor: Cortendo AB
For more information, please contact:
Jim Ellis at Cortendo AB tel: +1 (610) 254-9245 or jellis@cortendo.com

Thursday, November 13, 2014

Pituitary ACTH Hypersecretion (Cushing’s Disease) – Pipeline Review, H2 2014

Global Markets Direct’s, ‘Pituitary ACTH Hypersecretion (Cushing’s Disease) – Pipeline Review, H2 2014′, provides an overview of the Pituitary ACTH Hypersecretion (Cushing’s Disease)’s therapeutic pipeline.


This report provides comprehensive information on the therapeutic development for Pituitary ACTH Hypersecretion (Cushing’s Disease), complete with comparative analysis at various stages, therapeutics assessment by drug target, mechanism of action (MoA), route of administration (RoA) and molecule type, along with latest updates, and featured news and press releases. It also reviews key players involved in the therapeutic development for Pituitary ACTH Hypersecretion (Cushing’s Disease) and special features on late-stage and discontinued projects.


Global Markets Direct’s report features investigational drugs from across globe covering over 20 therapy areas and nearly 3,000 indications. The report is built using data and information sourced from Global Markets Direct’s proprietary databases, Company/University websites, SEC filings, investor presentations and featured press releases from company/university sites and industry-specific third party sources, put together by Global Markets Direct’s team. Drug profiles/records featured in the report undergoes periodic updation following a stringent set of processes that ensures that all the profiles are updated with the latest set of information. Additionally, processes including live news & deals tracking, browser based alert-box and clinical trials registries tracking ensure that the most recent developments are captured on a real time basis.


The report enhances decision making capabilities and help to create effective counter strategies to gain competitive advantage. It strengthens R&D pipelines by identifying new targets and MOAs to produce first-in-class and best-in-class products.


Note*: Certain sections in the report may be removed or altered based on the availability and relevance of data for the indicated disease.


Scope


- The report provides a snapshot of the global therapeutic landscape of Pituitary ACTH Hypersecretion (Cushing’s Disease)

– The report reviews key pipeline products under drug profile section which includes, product description, MoA and R&D brief, licensing and collaboration details & other developmental activities

– The report reviews key players involved in the therapeutics development for Pituitary ACTH Hypersecretion (Cushing’s Disease) and enlists all their major and minor projects

– The report summarizes all the dormant and discontinued pipeline projects

– A review of the Pituitary ACTH Hypersecretion (Cushing’s Disease) products under development by companies and universities/research institutes based on information derived from company and industry-specific sources

– Pipeline products coverage based on various stages of development ranging from pre-registration till discovery and undisclosed stages

– A detailed assessment of monotherapy and combination therapy pipeline projects

– Coverage of the Pituitary ACTH Hypersecretion (Cushing’s Disease) pipeline on the basis of target, MoA, route of administration and molecule type

– Latest news and deals relating related to pipeline products


Reasons to buy


- Provides strategically significant competitor information, analysis, and insights to formulate effective R&D development strategies

– Identify emerging players with potentially strong product portfolio and create effective counter-strategies to gain competitive advantage

– Develop strategic initiatives by understanding the focus areas of leading companies

– Identify and understand important and diverse types of therapeutics under development for Pituitary ACTH Hypersecretion (Cushing’s Disease)

– Plan mergers and acquisitions effectively by identifying key players of the most promising pipeline

– Devise corrective measures for pipeline projects by understanding Pituitary ACTH Hypersecretion (Cushing’s Disease) pipeline depth and focus of Indication therapeutics

– Develop and design in-licensing and out-licensing strategies by identifying prospective partners with the most attractive projects to enhance and expand business potential and scope

– Modify the therapeutic portfolio by identifying discontinued projects and understanding the factors that drove them from pipeline


Read the full report: http://ift.tt/14hYcJg




Monday, November 3, 2014

Today in Lab History

Jokichi Takamine was a Japanese-American biochemist and industrialist, born Nov. 3, 1854, who isolated the hormone produced in the adrenal gland that causes the body to respond to emergencies. This chemical was adrenalin — now called epinephrine — from the suprarenal gland. It was the first pure hormone to be isolated from natural sources.


He applied for and received a U.S. patent on the substance, and went on to make a fortune with his marketing of Adrenalin. In fact, the product that he marketed was not pure epinephrine, but a mixture of the hormone and its sibling compound, norepinephrine, or noradrenaline. It is now made synthetically. He also found takadastase, and played a key role in the introduction of phosphate fertilizer along with various other manufacturing and chemical industries to Japan.


~~~~~


How_to_give_EpiPen


Epinephrine, an EpiPen or Auvi-Q/Allerject injection, should be given in the mid-anterior lateral thigh (not the outer thigh). We call this the EpiCenter of the thigh, and this video segment from the EpiCenter Medical (http://ift.tt/1x0SllT) online anaphylaxis first aid course has a thigh location graphic to help you pinpoint the most effective location for the injection.





Wednesday, October 22, 2014

Safety of DR-HC for adrenal insufficiency

Conventional treatment of adrenal insufficiency involves cortisol replacement therapy with twice- or thrice-daily oral hydrocortisone. Recently dual-release hydrocortisone (DR-HC) administered once daily to provide high levels of cortisol during the morning, followed by a gradual decrease throughout the day is being used. This results in considerably lower cortisol exposure during the afternoon and evening compared with immediate-release thrice-daily hydrocortisone, thereby mimicking normal cortisol secretion more closely than conventional therapy.


Nilsson et al. conducted a study to evaluate the long-term safety of DR-HC and whether the difference in the incidence of adverse events persisted over time and if it was related to different levels of exposure to cortisol. They conducted a randomised, open-label, crossover trial of DR-HC or thrice-daily hydrocortisone for 3 months each (stage 1) followed by two consecutive, prospective, open-label studies of DR-HC for 6 months (stage 2) and 18 months (stage 3) at five university clinics in Sweden. The results of the study of the newly developed DR-HC showed that long-term maintenance treatment and rescue therapy was well tolerated up to 27 months of continuous treatment.


Read full article titled ‘Prospective evaluation of long-term safety of dual-release hydrocortisone replacement administered once daily in patients with adrenal insufficiency’ by Nilsson et al., European Journal of Endocrinology 171 pp 369 – 377, DOI: 10.1530/EJE-14-0327




Cushing Syndrome in Children: Growth after Surgical Cure

Cushing syndrome (CS) occurs only rarely in children, but when it does, it causes weight gain and stunting. In young children, adrenal tumors are usually the cause while in adolescents, pituitary tumors are more likely.


The September 2014 issue of Endocrine-Related Cancer examines growth patterns in 19 pediatric patients with ACTH-dependent CS (CD) and 18 patients with a form of ACTH-independent CS, micronodular adrenal hyperplasia (MAH). The researchers gathered data at the time of surgery and also followed up one year later.


Patients in the CD and the MAH groups had similar demographic characteristics, baseline heights and BMI scores before surgery. All patients experienced significant improvements in height and BMI after surgery. Patients with MAH, however, fared significantly better than those with CD and had better post-operative growth.


The researchers propose several reasons:



  • When ACTH-secreting pituitary adenoma requires extensive surgical exploration, remaining pituitary cells often lose some of their function.

  • CD patients tend to be older and have consistent and increased glucocorticoid exposure; they develop vertebral fractures more often leading to compromised skeletal and overall growth potential. MAH patients often have cyclical CS, with intermittent hypercortisolism and an overall milder CS.

  • CD patients often need a longer-than-expected course of therapy with steroids after surgery, which alters metabolism and growth.

  • CD patients have been shown to have advance bone age because of ACTH-induced metabolic changes.


The authors indicate that CS patients are often considered for growth hormone therapy once the underlying problem is corrected. They remind clinicians that MAH patients are less likely to need growth hormone. They recommend close monitoring for CD patients, and early intervention with growth hormone if growth does not meet expectation. -


See more at: http://ift.tt/1thzAJB




Webinar: Hypothalamic Pituitary Dysfunction in Young Athletes with Head Injury (THI)

Don’t miss this great opportunity.

Join us tomorrow for a free webinar!


Date: October 23, 2014

Time: 12:00 – 1:00 PM Pacific Daylight Time



Hypothalamic Pituitary Dysfunction in Young Athletes with Head Injury (THI)

Presented by: Saad Sakkal, MD, FACP, FACE, FACPE

Director, Metabolic Care Center, Mason, Ohio


Traumatic brain Injury has been recently of great attraction to researchers, retired football players, and the public. But years before it is documented clinically the Hypothalamic pituitary Dysfunction symptoms appear at much earlier age and need more vigorous attention.


We present in this webinar the early symptoms and recognition of the syndrome from clinical perspective. Describe the Hypothalamic Dysfunction in its widest picture, its relation to Fibromyalgia/Chronic fatigue, and its present therapy available .


If you are unable to attend the live webinar, we will have it available on our website starting Monday. I will post a link when it is available.


http://bit.ly/1qvUcZO





Monday, October 13, 2014

Monday, July 21, 2014

Cushing’s Help is 14 Today!

Who’d have believed it?  Today, July 21, 2014 is our 14th birthday!
It’s unbelievable but the idea for Cushing’s Help and Support arrived 14 years ago last night. I was talking with my dear friend Alice, who ran a wonderful menopause site called Power Surgewondering why there weren’t many support groups online (OR off!) for Cushing’s and I wondered if I could start one myself and we decided that I could.

The first website (http://www.cushings-help.com) first went “live” July 21, 2000 and the message boards September 30, 2000. Hopefully, with these sites, I’m going to make some helpful differences in someone else’s life!

The message boards are very active and we have weekly online text chats, weekly live interviews, local meetings, email newsletters, a clothing exchange, a Cushing’s Awareness Day Forum, podcasts, phone support and much more.

Whenever one of the members of the boards gets into NIH, I try to go to visit them there. Other board members participate in the “Cushie Helper” program where they support others with one-on-one support, doctor/hospital visits, transportation issues and more.
5d4c9-woohoo-scaled800

Monday, June 9, 2014

Interview with Stacy, Mom to Possible Cushing's Patient

Stacy writes in her bio
MacKenna is my daughter.  I am in desperate need of assistance regarding her weight.
She is 6 years old and weighs about 95 pounds.  At four, she was normal to underweight.

First clue – she gained 10 pounds in three months.  Of course doctor’s wanted a food log …. however, as her parent, I knew something was wrong.

So much to say, I NEED to help my baby and am hoping someone on this board can point me to a good pedi endo (I am currently on my second).  I have pictures to show the progression of her changes.  Her growth pattern is abnormal as she does not gain height while she gains weight and vice versa.

I believe it is cyclical cushings.  And if it isn’t, I still need help as this is going to kill her – her little frame cannot hold much more.

McKenna's mom will be interviewed June 11 at 6:00 pm eastern in BlogTalkRadio.  Archives will be available later in the Cushing's Podcast.