I've been off work now for 7 weeks and will continue to be off work while I start my new treatment plan. If this does not work, we are considering Radiotherapy.
I will still be on Sandostatin (lower dose 40mg every 4weeks instead of 60mg) and will be introducing Somavert daily injections starting at the lowest dose 10mg and see how that works???? I really thought that the increase of Sando to 60mg was going to do the trick but sadly no. I have been off work (off and on now) for approximately 4 consecutive years because of my active Acromegaly.
Hopefully, this time around, with this new treatment plan, I will see/feel long lasting results where I can go weeks/months/maybe years without returning symptoms!!!
Thinking of all you,
Julie
My doctor, Simon de Vial has retired
10 months ago
5 comments:
Hi Julie. Wow...60mg Sando not working? Can we develop a resistance to this or something?? I hope you don't have to resort to radiotherapy. From what I've read I'm not sure it's worth it, a long wait for possibly no results. But I know we have to do what we have to do when we exhaust all options. Good luck to you!
Hey there.
I'm writing a book and building a website, charity and company. Would love to connect. Check out my/ our story at www.pattimhall.ca. And www.giantsamongusspace.blogspot.com. Patti@pattimhall.ca.
Hi, I’m Richard from the UK. This last ten months I started my journey with a pituitary tumour and acro. Anyway, I came across your blog and wanted to say hi. Really sad but interesting to read about your experiences. I’m currently having loads of issues with the stress of it all and about to start treatment as some residual tumour from my op in November last year is starting to miss-behave. Funny how it makes it easier to accept the condition when you read others experiences. Anyway, I hope you are well, take care and keep fighting the fight. Oh I have a blog at www.dickymoo.com Regards,Richard Moore
I'm sorry to read that the meds are not working. Thinking of you, too - and pray the new treatment plan is effective and you can avoid radiotherapy. I'm sorry you're going through this. It's a difficult decision either way.
Hi Richard. Glad to meet you via the virtual world :). I am so amazed when I see another person afflicted with Acro. Before diagnosis, I never heard of the big bad Acro. Did visit your blog and just love your recent post about "time out from Acromegaly". So true. If we don't we can get consumed by it all. Luckily, I have benefits which allows me to be home while I begin my new treatment. I have an appointment today to see my Endo. I began my daily 10mg of Pegvisomant since April 26th and have not had any Sando this month. I will go for an IGF-1 blood test at the end of the month to see if my levels have decreased? So far, I still have more bad days then good. I'm keeping positive and enjoy my good days. I truly hope your new treatment will help. I will keep reading your post. All the best, Julie
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