A Plea to Scientists around the World: “Study Oxytocin for Brain Tumour Survivors, Please!”- READERS, I NEED YOUR HELP!

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My beautiful Hana, I WILL find a way to heal you xx

If you’re reading this, is there any chance you can help me with a campaign? I want to ask scientists worldwide to consider researching a new potential cure for my little girl’s brain tumour related health conditions.  All you’ll need to do is press “share” on your Facebook or share through whatever social medium you use so that this blog post is seen  by as many people as possible. This way, someone, somewhere may go

“YEAH! Cool idea for a study! Let’s do it!’

And that way, you may be instrumental in pushing science forward in a direction that could help my daughter and thousands like her have a better quality of life.

If you are short of time just read these five short paragraphs:

In a Nutshell My six year old daughter had a brain tumour called a ‘Craniopharyngioma’ diagnosed earlier this year. The tumour is out but she is still sick and I promised I’d find a way to heal her: “I will heal you”…A promise to my daughter after her Brain Tumour. So what I want is someone, somewhere to do a study on the effects of Oxytocin Hormone Replacement Therapy in patients with Craniopharyngioma. Things that I would like looked at would include; 1. Management of Appetite and Weight Regulation 2. Improved Perceived Quality of life.

 

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One week after her tumour was removed, still in ICU, smiling for the camera even though she had no idea where she was or why she was there. My Hana is a fighter and is fighting this battle with me

Survivors of Craniopharynigoma are lucky – their prognosis is better than many other types of brain tumours.However, they frequently wake up from their surgery with damage to an area of the brain called the “Pituitary Gland.” The Pituitary Gland is responsible for secreting hormones and so Craniopharyngioma survivors are given a selection of medications to replace some of the hormones missing from the Pituitary Gland. An example of these medications includes synthetic hormones such as Thyroxin to replace missing Thyroid Function and Steroids to replace missing Cortisol, these prescribed hormones are necessary for sustaining life. However, not all Pituitary hormones are replaced via medication; the Pituitary Gland also secretes other hormones that are not directly linked to ‘survival’ and one of these hormones is Oxytocin.

My daughter is alive, she is surviving, yet watching her  recover has left me wanting: There is so much more to life than merely ‘surviving it.’  Hana struggles with low energy, low mood, poor social interaction and the worst of it all; an extreme hunger (hyperphagia) that possesses most of her waking thoughts and an enormous, debilitating weight gain, the dreaded onset of Hypothalamic Obesity. So what does Oxytocin have to do with this? Let me tell you:

Oxytocin has been studied over the last few years for its positive effects on mood and sociability in people thought to produce low levels of the hormone, yet suriviors of craniopharyngioma like my daughter, who can no longer produce Oxytocin are not offered oxytocin as part of their standard hormone replacement therapy. Secondly, a study last year, 2013,on obese human subjects showed that oxytocin administration decreased appetite and facilitated weight loss through metabolic changes – with no negative or toxic side effects. Could these remarkable effects of oxytocin, a missing, non-replaced hormone, help people like my daughter?

Doctors are less likely to prescribe a ‘new therapy’ (even though it’s known to be beneficial in other areas) without a study, or a human trial on the intended population. So I am now calling upon the international scientific community to consider conducting a study on a sample of craniopharynmgioma survivors so that we may all see, and know, what impact Oxytocin Hormonal Replacement could have  in their lives.

That’s the shortest, briefest summary. If anyone reading this thinks such a trial could be a good idea, please get in touch via this blog or my Facebook Page and I’ll spread the good word to other Cranio survivors and their parents.If you don’t want to read anymore, please press the ‘Share’ button or email this link to someone who may want to help.

IF you have time to read more, here is the background:

I declared war against the onset of Hypothalamic Obesity in my six year old daughter the week after her brain tumour was removed.

It started here: Healing my Daughter’s Brain and a raging War against her Obesity

and then, last week I came across something amazing via the Cranio Facebook Page and I wrote this –

WOW! Is this the potential CURE for my daughters’ Obesity?’

and I did some further research on it –

‘My Daughter NEEDS Oxytocin after her Brain Tumour-Why isn’t she getting it?’

The medical profession has no cure for my daughter’s condition which is characterised by an all consuming constant hunger and rapid weight gain in spite of diet and exercise. Medical studies haven’t been able to figure out  exactly why some patients with Craniopharyngioma develop Hypothalamic Obesity (although there are risk factors, more on that here) but I’m beginning to wonder whether PART of the answer lies in inadequate, partial hormone replacement therapy? The hormone Oxytocin has SO many other functions beyond lactation and labour yet it is not prescribed for patients with tumour related Panhypopituitarism (non functioning Pituitary Gland) and many go on to develop hyperphagia and weight gain. As far as I can see, no one has yet suggested that this missing hormone may actually be a contributing factor to this distressing condition. Medications that work against the body are prescribed, like Ritalin and Dexamphetmaine, stimulants to crank up the broken metabolism and Sympathetic Nervous System,  yet could the answer – or part of it – actually lie within a missing, replaceable hormonal signal? Could part of the solution be so obvious, so glaringly simple, that science and medicine have been blind to it? 

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Two days before her tumour was removed. I was wishing I could kiss it out of her head. I was wishing my love could be enough to obliterate it.

I will be trialling the hormone, Oxytocin on my daughter over the next few weeks – as far as I know no other child worldwide after a craniopharyngioma has ever used Oxytocin for improved quality of life and weight/appetite regulation. Hana is the first! I intend to blog in detail what I observe. But watching the progress of my daughter isn’t enough. She is highly sensitive to even minute hormonal changes and it could take us a while to work up to a therapeutic dose. In addition, a case study is not considered rigorous science. I could do a Ph.D on the topic –  I may well be pushed to if no one else wants to do the study  – but a Ph.D will take me years to complete! Meanwhile there are hundreds, thousands, of people who could potentially be benefitting from improved quality of life from Oxytocin replacement therapy right now…If it is proven to help.

This is why I need you to press the share button, and send this “Plea” to the inboxes of anyone you feel would be interested in taking this further. Someone may know someone! I hope and feel the future of my daughter, and so many others, could be so much brighter – if only science would let it be so.

Thanks for reading, Naomi Cook

More on our Brain Tumour Journey can be found here, and I always put daily updates on my Facebook Page .

 

 

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  23 comments for “A Plea to Scientists around the World: “Study Oxytocin for Brain Tumour Survivors, Please!”- READERS, I NEED YOUR HELP!

  1. Kisha
    May 26, 2014 at 3:08 am

    I to was diagnosed with a craniohyranginoma in 2007 before the craniotomy to remove my tumor I was a rock climber a new mom and weighed even after my child a 103 I was 98 pounds even at 30. Today I work full time, caring for my daughter but weight 170 pounds. I went to a nutricianist who put me on a 800-1200 calorie diet and I went to Zumba 4 x a week I only lost 7 pounds religiously following the diet & exercise. What I know know is that the pituitary and hypothalamus damaged left me with never feeling full. Also with out the hormones I need to control my metabolism it was a losing battle. As I am panhypopituatry which means when I eat my body says store the food instead of what it should do and that is to use the food as energy. Therefore I too have low energy. Desire all the odds and the other diseases such as adrenal insuffceny, diabetes insipidus ( sodium based diabetes) neuropathy and blindness from the tumor, I keep going but please, please someone study oxytocin and make me whole again, the old me climbing to new heights myself and my daughter would be forever grateful!

    • Naomi R Cook
      May 26, 2014 at 3:40 am

      Kisha, thank you so much for leaving this beautiful comment, I have copied and pasted part of it and shared it on my Facebook page, I’ve referred to you as “Kisha”. Take care of yourself x

  2. Carol Johnson
    May 26, 2014 at 1:03 pm

    I was researching the use of oxytocin in craniopharyngioma survivors when I came across your blog. My daughter had surgery just before her 8th birthday and is now 20 years old. In her later teenage years we tried dextroamphetamine which was extremely helpful in increasing her ability to exercise and enjoy activities we take for granted, bicycling, swimming, etc. We are hoping her endocrinologist will consider oxytocin replacement therapy. I sent her doctor several journal articles indexed on Pubmed after her last appointment, Her upcoming appointment is next week…..

    • Naomi R Cook
      May 26, 2014 at 6:59 pm

      Oh wow Carol that’s amazing that your research led you here – had you come across the 2013 human trial for weight loss, or were you wanting it for increased “warmth” social interaction etc? Please let me know how it all goes!

      • Carol Johnson
        October 20, 2014 at 1:50 am

        Here is an update: She feels better after 60 days on Oxytocin nasal spray. The only thing we could find was one source in the US. ABC Pharmaceuticals. We really don’t know if it is legitimate Oxytocin but we decided to try it anyway, with support from her Endocrinologist who said she is not able to prescribe it at this time but supported us trying what we could find online. One thing my daughter noticed right away after a short time taking Oxytocin was her skin seemed to heal much faster than usual. Previously if she got a small nick or cut it would take such a long time to heal, she seems to be healing much faster post Oxytocin use.
        The situation you observed with your daughter and her relationship with her younger sister post surgery sounded eerily familiar. My daughter’s relationship with her younger brother- and her friends at the time- changed immediately after her surgery. At the time I thought it was the trauma of the surgery, hospitalization and rapid changes in her body. Many years later my daughter is a lovely young woman, but her social relationships have been a struggle, she doesn’t seem to be able to obtain that closeness with people that I just take for granted with my friends. It is hard to tell but I do think that she is feeling a bit more connected with Oxytocin use. We are convinced enough to re-order after the first 60 day trial.
        Best wishes to you and your family.

      • Naomi R Cook
        October 20, 2014 at 3:04 am

        THIS IS AWESOME! I’m going to copy your comment and paste it as a whole blog post to itself and link back to here. I will then send it to Herman Mueller in Germany who is an expert in Cranio care – he is very interested in my Oxytocin treatment – and now he will be interested in yours! Fantastic, thanks so much for sharing.

  3. Kate
    May 27, 2014 at 2:07 am

    Hi, my name is Kate and I had my pituitary and tumor removed in 1995, nearly 19 years ago. My brain tumor wasn’t found until I was 15 years old. I have had weight and energy issues since I was a small child. After struggling for 15 years with some very serious problems, I found the most amazing endocrinologist and we finally found the right combination of meds for my diabetes insipidus, thyroid, hypopututarism, insomnia and other issues. I also found great connections through the Pituitary Network Association and I have found friends with similar pituitary tumors and issues.

    These last 19 years have been a learning curve for me and my family. I have finally, almost put the horror and pain and problems of the last 19 years behind me. Those years were full of ups, downs, deep dark downs and finally, in the last 5 years, some great highs. Everything about pituitary tumors is still rather new and one of the problems we all face, is all of the unknown. My surgery in 1995 was one of 5 surgeries in Indiana that year. We still are in the beginning of knowing about the pituitary and its tumors, like craniopharyngioma. In my case, we never got the point where we were prepared for anything. Almost everything I have faced, as come out of the thin air and we don’t have the time to deal with it. If it helps, I have been on almost every thyroid med and my favorite thyroid medicine is tirocent. I hope everything goes well, you are in my thoughts. Kate

  4. May 27, 2014 at 7:10 pm

    Reblogged this on lyndarenham and commented:
    My six year old granddaughter Hana was diagnosed earlier this year with a brain tumour. Her mother Naomi, my stepdaughter has been amazing and her determination to find a cure forHana’s brain tumour related heath conditions is admirable. I hope you will read her blog below.
    Lynda x

  5. June 9, 2014 at 2:27 am

    I wonder whether this could also help my grand-daughter who is nearly 18, but just before her 5th birthday was involved in a car accident that left her with acquired brain injury. Worst of all though was it shook her pituitary gland and damaged her hypothalmus. She now weighs 130 kgs and it always hungry. She is on thyroxine for life and takes a higher dose than my father who had his entire thyroid removed through cancer. Her cortisol levels are also low and she carries around an epi-pen in case she goes into adrenal shock. Not one specialist has mentioned Oxytocin so maybe it is not for her, but I know she is now so conscious about her weight and all the implications that has on her future. Best of luck with your campaign and for Hana’s future. My daughter Christie shared your story and I have also shared it on facebook in the hope someone will step up and help. Hugs xxxx

    • Naomi R Cook
      June 9, 2014 at 2:36 am

      Karen, no one has mentioned it because no one has yet ‘made the link’. It seems so crazy because it is SO obvious (to me and many other people with tumours and acquired brain injury). This is why I need to create a stir and find someone who will study it in people who need hormone replacement. This week I am going to the media and hope it will spiral into more publicity, more talking and ultimately a study. My daughter has already started taking it (look under the Brain Tumour Category and you’ll find out what happened when she took it). Thanks so, so much for sharing x

  6. Melissa
    September 4, 2014 at 3:50 am

    I see this was posted back in May. Do you have any updates?

    • Naomi R Cook
      September 4, 2014 at 3:53 am

      Yes! Quite a few – out of interest how did you find this link? I’ve suddenly had nearly 500 hits in an hour with no clue as to where from! If you go under the Brain Tumour category there are a few follow up posts and I’m due to blog another update very soon.

  7. Tanya
    September 30, 2014 at 8:08 am

    Hi Naomi, can’t wait to see your next update regarding your beautiful daughter Hana. I have PHP as well, but caused by a rathke cleft cyst. It has now been nearly three years since the surgery and to be totally honest, no Doctor or medical professional can ever tell any patient (or parent in your own case) the differences our bodies go through with these pituitary and hypothalamus conditions.

    I used to weight 50kg at a height of 5’1, but always struggled to keep my weight down. It see sawed for many years between the very low end of weight to a maximum of around 70kg. But when I lost a lot of weight 4 years ago, PHP was unmasked even before the rathke cleft cyst grew to its largest size of 25mm. I’m now left with PHP, an auto-immune pituitary condition called Lymphocytic Hypophysitis and constant problems balancing out the current hormones I take; thyroid, hydrocortisone, estrogen, progesterone and growth hormone. Over time I am feeling much worse.

    My attention was drawn to your blogs especially because of Hana’s emotional wellbeing and overall motivation + bonding experiences with the family. Very slowly over time I have ‘felt’ like there was something VERY missing. And after some hormone changes and coming off another drug last year I noticed that there is a huge ‘maw’ or gap in my emotional, plus social behaviour, self esteem, general wellbeing and ability to fulfil every day tasks.

    My new Endo contributed it to GH deficiency for adults after I was diagnosed earlier this year and found I don’t create any at all. So we both thought there would be a substantial improvement with GH. But slowly, over time it is even worse than before. No motivation, no self esteem, I have trouble fulfilling basic tasks and am now having problems functioning in the workplace and unable to deal with any stress. The impact it has had on my family is immense. I no longer know how to interact with my children (7 and 6) and every wkend when not working I am either exhausted or smothered with severe apathy, that it literally drives everything to a halt.

    As an adult it is hard dealing with these dillemmas, but I can only imagine what it would have been like for Hana; and you as a parent having to deal with this by feeling that it was outside of your control.

    My kids are so beautiful and allow Mummy to get as much rest as I can. But I can tell the toll it is having on our relationship. Going out of the house to spend time with them, I just don’t enjoy anymore. The bonding experience is broken… Even though I love them dearly beyond my heart and I KNOW I will fix this.

    Your sharing Hana and Your journey has helped me find the courage to continue to look for answers. It was kind of funny actually, I live on the Central Coast at Tuggerah/Wyong and my Endocrinologist is in Sydney. I nearly DIED when I found out that Dr John Hart is also in Sydney as well and brought me to tears, as so many PHP patients I have talked to are aware of oxytocine deficiency, but no Doctor will let them try it.

    I am very nervous about bringing up oxytocin to my Specialist as I have fought for three years with Doctors over the adult growth hormone deficiency. But I realise no person should have to live like this. I will find my way in time.

    Much love to you and your family and thank you for sharing this with the world!

    • Naomi R Cook
      September 30, 2014 at 8:39 am

      Tanya thank you so much for your beautiful comment and sharing your story with me. My heart goes out to you – I can’t bear the thought of you suffering from feeling unable to bond with your kids. It must be unbearable. The sort of things you’ve described to me – many other PHP adults have approached me over the last few months saying the exact same thing; that ‘something’ is missing, that they just don’t feel like themselves anymore. It would be brilliant if Oxytocin is one way of bringing back a little more of the ‘old’ self people like you miss so much. A little piece of the puzzle. GOOD LUCK approaching the topic of Oxytocin with your specialists, it can be like coming up against a brick wall and you get tired of ‘fighting’…I really get that. But at least Dr Hart is ’round’ the corner, within arms reach! He’s a brilliant doctor and I’m forever grateful to him for being capable for thinking and acting outside of that restrictive box so many in the medical profession are stuck within. Please keep in touch!

  8. Danielle dodin
    October 10, 2014 at 7:01 am

    I have learned about your beautiful little girl Hana trough my daughter Sabrina and granddaughter Lucia and praying that a medical team or a doctor can help her with her condition, both my husband and I have read your article, and let hope many more will do the same and help is not too far away , you will need a lot of courage and determination and I sure you have both as you presented her condition so well ,let hope the scientists around the world can do something for little Hana . God bless you and your family Danielle

  9. Heidi
    October 18, 2014 at 1:21 am

    I had the surgery (craniotomy ) in June and my Endo wants me on oxytocin ..we live in NYC and can’t even find a lab to do the test

    • Carol Johnson
      October 20, 2014 at 1:16 am

      Here is a link to a possible treatment: http://www.ncbi.nlm.nih.gov/pubmed/23392214

      The drug is marketed in the US under the name- Liraglutide. Best wishes to you and your family.

      Eur J Endocrinol. 2013 Apr 15;168(5):699-706. doi: 10.1530/EJE-12-0997. Print 2013 May.
      GLP-1 analogues as a new treatment option for hypothalamic obesity in adults: report of nine cases.
      Zoicas F1, Droste M, Mayr B, Buchfelder M, Schöfl C.

  10. JR
    May 20, 2015 at 3:48 am

    Oxytocin’s half-life is only a few hours. I’m a pituitary tumor survivor too but it seems like a poor option to offer to take multiple shots per day of oxytocin. Plus it must be injected. It won’t survive the stomach as a pill. Seems like there should be better options.

    • Naomi R Cook
      May 20, 2015 at 9:56 pm

      JR – the form discussed here is Intra-nasal Oxytocin which has been around a little while. Yes, it has a short half life but most studies have a four times daily dosing regime which is a small price to pay for an improved quality of life.

      • sarah
        July 4, 2015 at 1:47 pm

        For the first time since my sons journey with craniopharyngioma began, I feel some new hope…. Taran is 18 in november, first op age seven, regrowth resected age 8, 10 weeks high density radiation age 9… he has had weight gain, working memory issues etc but the lethargy and the ’emotional disturbance’ and social connection issues only seem to worsen… his suicidality is a horror we live waking and sleeping… naomi you mentioned that oxytocin may help with overall sense of wellbeing? Is anyone able to elaborate on this for me? Desperately hopeful
        Sarah

      • Naomi R Cook
        July 6, 2015 at 5:01 am

        Hi Sarah, thanks for connecting with me.I’m so sorry to hear of the awful emotional disturbance your son suffers, it must be so painful for you.

        Oxytocin is known as the ‘love hormone’ and gives you that warm, yummy feeling when you hug someone, so in that respect overall sense of wellbeing should, in theory, improve when you are taking it. There are no studies on the Panhyopit and Cranio populations YET, but I know of 2-3 in the pipeline (I am actually working with one US based researcher on writing up Hana’s experiences as a Case Report to be submitted to a medical journal), once they are published it will be easier to get scrips for Oxy. In the meantime, our prescribing GP will do online consults and get the compounded Oxy posted to you. Let me know if you are interested – I have his contact details blogged here. I’ve written a lot about the benefits of Oxytocin in other blog posts so I’ll put link to a summary here and you can check out the links:https://nursenaomi.com/2014/09/25/update-on-how-oxytocin-hormone-replacement-changed-our-lives-please-share-and-spread-the-word-for-brain-cancer-survivors-and-sufferers-of-pituitary-disorders/

      • sarah
        July 6, 2015 at 7:14 am

        O god yes plz re the online consult… im done worrying about whats going to do what to him..within reason of course… and he tells me much the same thing… its about quality of life Naomi, and keeping him around. Im off now to check out those links you sent, know how much youve lifted my heart and spirits. We accepted long ago that we werent going to find a magic pill, but anything that helps these kids feel more ok from one day to the next is a blessing… wish I could squeeze some big love into your hana, from one more human that holds hope for her happiness…. big love to you too naomi…

  11. Erica
    December 27, 2015 at 1:40 am

    Hi. I am 36 years old. I had surgery at the age of 13. I too had Craniopharngioma tumor. I’ve seen nutritionists, exercised, been.on a number of diets, pills etc. My current endocrinologist prescribed GH (I also had these injections at the very beginning of my treatments). I’m on thyroid meds, hydrocortisone, an oral contraceptive, iron, Desmopressin, and a firm.of Glucophage…all as treatment for Panhypopit. I am obese and found your blog as I searched for possible essential oils that could help to improve quality of life. I thank God for where I am in life now. I’m legally bind (no peripheral vision and blind in one eye). I graduated college, grad school, and have been teaching for the last 15 years. I reside in.Panama (the country- I’m teaching there now) though I am from NJ in the USA. Please keep me abreast of any new findings! I’d love to be apart of anything that would help Jana, myself, and others. God bless you and your family! I am praying for a miracle. I trust God and believe He will bring it, if even through medicine or natural herbs.

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