New Bloggers!

Hello dearest readers! 

I just wanted to take a moment to draw your attention to two new bloggers that have been added to the sidebar to the right --------->

Brotha writes about Living with Acromegaly at acromegallic.blogspot.com.  "I'm trying to find a way to turn this into something positive, so I decided to write about it and share my day, feelings, fears, joys, and whatever else I may think of with you. And in turn my this will be therapeutic for me and entertaining to you."  Brotha is so inspiring!

Emer was diagnosed with a pituitary adenoma secreting thyroid-stimulating hormone less than a year ago, and she writes about all kinds of pituitary tumors in her incredibly humorous blog Pituitary Ademoaner (pituitaryademoaner.blogspot.com).  In her recent post profiling famous people with pituitary tumors, she writes,  "Acromegalicious folk are obviously awesome," and I think she's awesome too!

Check out both blogs when you have the chance, and make sure to introduce yourself or say hello to them in the comments!

If there's anyone else out there that wants to be added to the roster, just leave a comment on this blog with a link to yourself!

No more octreotide hydrogel implant

Endo Pharmaceuticals reportedly stopped development of their octreotide implant, despite studies that showed that it was safe and effective.  I wonder why?  I mentioned the discontinuation of the implant to my husband, and he suspected that everyone's focus has shifted to oral ocreotide (a pill that would deliver the same medication).  Maybe so, but with a pill you have to remember to take it every day (or however often), you'd probably have to keep it refrigerated so travel might be annoying, and of course there would still be the whole hassle of getting your prescription filled, etc, etc.  Don't get me wrong! The pill sounds great too!  But I really wanted to try the implant and I was waiting for it to become available.

I tried to join the clinical trial for the implant a few years ago, but I was disqualified because my growth hormone levels were beyond the allowable levels while on an alternate medication.  I was so disappointed!  That implant gave me the promise of being "normal" for 6 months at at time... no injections every few weeks, no visits to the medical center, and no struggles between the health insurance and pharmacy every time I had to refill my prescription.  No reminders that I'm different than everyone else for 6 months.

Earlier this year I met one person at the acromegaly community conference who had the implant, and she seemed pretty happy with it (she made it into the clinical trial plus they had an extension).  I looked at the place where her implant was inserted and it looked pretty subtle, it seemed comfortable enough, and if it's true that you don't have to think about it for 6 months, then I'd be so thrilled!

These days I have my intramuscular ocreotide injection administered at home, by my husband who has been trained by a nurse on how to do it properly.  I also have a short acting subcutaneous version I give myself in addition to the long acting one, just for days when I can feel my symptoms acting up (swelling, headaches, joint pain, acne, etc).  I just happened to have my intramuscular shot today and that's what reminded me of the article I saw about the implant being discontinued.  Even having the shot done at home is still a hassle, with the ordering/refilling, storing, scheduling, mixing and injecting.  I have a huge bin of "sharps" in one of my cabinets and every time I see the medication in the fridge I'm reminded that there's something wrong with me.  I worry about what people will think if they see all my sharps in the bin and the medication when they come over.  Oh yeah, and sometimes the injection hurts (although my husband has gotten really good at making it quick and relatively painless).

I wish they would have continued bringing the implant to the market.  If nothing else, it would have given acromegaly patients like us OPTIONS and potentially FREEDOM from a routine of ongoing injections.  I was so happy that people were at least trying to make our lives a little easier, as opposed to just accepting whatever existing treatments were out there already.  I appreciate the all the work that every researcher does towards creating new treatments (everything that's out there right now, things that are shelved like the implant, and the oral one that's in the works).  It's important that people keep working on better treatments, and don't forget that as the acromegaly treatment landscape more competitive, it could drive the prohibitively high price of treatment down for everyone.

Anyway, hopefully people are really just working on a real end-of-story CURE for all us.  There's some amazing research going on out there with viruses plus our own immune system that has shown to be effective for cancer.  It can't be that much further down the line before this knowledge is targeted towards pituitary tumors!  Till then, I hope we'll all be here for each other.

Woah!

via http://www.guardian.co.uk/science/2011/nov/09/pituitary-glands-embryonic-stem-cells

This could lead to some very interesting treatments for those who have hypo-pituitary symptoms after radiation or surgery.  And eventually, who knows how this could impact the treatment of acromegaly?

Pituitary glands grown from mouse embryonic stem cells

If the same trick can be repeated for human pituitary glands it could transform the treatment of debilitating hormone disorders

• David Derbyshire
• guardian.co.uk, Wednesday 9 November 2011 13.26 EST
• Article history

Mouse pituitary tissue grown from embryonic stem cells. Fully grown glands produced hormones when transplanted into mice. Photograph: Yoshiki Sasai/RIKEN

Scientists have grown working pituitary glands in the lab that could potentially transform the treatment of people with a range of debilitating hormone disorders.

The team of Japanese researchers grew the tiny hormone-secreting organs using stem cells taken from a mouse embryo. When the tissue was transplanted into mice with pituitary gland defects, it raised levels of the missing hormones in their bodies.

Dr Yoshiki Sasai, who led the study at the RIKEN Centre for Developmental Biology in Kobe, Japan, said: "It is difficult to guess how long it will take, but we hope that we can produce human pituitary tissue in the next three years." It would take longer to develop techniques to transplant the cells, he added.

The creation of spare body parts for transplant is one of the goals of stem cell science. Stem cells are the body's "master cells" and can turn into a range of different types of tissue, such as brain, muscle or pancreatic cells.

Any tissue or organs grown from patients' own stem cells would not be rejected by the body, doing away with the need for immunosuppressant drugs.

Pituitary glands – the oval, pea-sized organs at the base of the brain – are a particular challenge for stem cell researchers because they are so complex. They have two distinct parts and secrete at least eight hormones regulating growth, fertility, breast milk production, blood pressure, contractions during childbirth, temperature and water balance.

Using mouse stem cells arranged in a three dimensional culture, Dr Sasai's team mimicked the way pituitary glands develop in the embryo. The resulting tissue contained all five types of cell found in a normal gland and took around three weeks to grow, the scientists report in the journal Nature.

"We have made hundreds of pituitary glands from embryonic stem cells," said Dr Sasai. When the tissue was transplanted into mice with pituitary defects, levels of missing hormones in their bodies rose to normal.

Although the researchers used embryonic stem cells in their experiment, they believe the technique could work with stem cells derived from adult tissue – so-called induced pluripotent stem cells. That would avoid the ethical concerns some people have about using human embryos in research and therapies.

Even if the scientists can grow a human pituitary, they still face major obstacles in creating a safe and efficient way to transplant it, Dr Sasai said. However, he believes lab-grown glands could lead to treatments for growth hormone deficiencies and damage to the pituitary glands caused by surgery and Sheehan's syndrome.

Women with Sheehan's syndrome, which results from blood loss during childbirth, have problems breastfeeding, suffer tiredness, weight gain, constipation, low blood pressure and slowed thinking.

Prof Robin Lovell-Badge, one of Britain's leading stem cell experts at theMedical Research Council's National Institute for Medical Research in London, said: "It is unlikely that these in vitro-derived pituitaries are fully developed and make hormones in precisely the same way as normal.

"However, the fact that they got as far as they did is impressive. It suggests that there is a fair amount of self-organisation, which means that it might be easier than we thought to build not just pituitaries, but also other organs from embryonic stem cells and induced pluripotent stem cells – as long as they are not too complex.

"It also opens up new possible ways for treating patients with defective or missing pituitary glands."