Journal Entry for February 14, 2008
February 14, 2008 5:16am
Hi eveyone,
Im new to this forum, so I just wanted to say hello, and hope I can learn a thing or two from you. Thanks
spiegal
5:20am, October 15, 2009
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About Me
spiegal
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About Me
Im a 59yr old mum, who daughter has been diagnosed with Acomegaly in May 2007, trying to find out as much as I can about this disease, and all of the ongoing treatment,
Im a 59yr old mum, who daughter has been diagnosed with Acomegaly in May 2007, trying to find out as much as I can about this disease, and all of the ongoing treatment,
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Journal
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Hugbook
Hug
Hi Spiegal, Hope your well and your daughter is finding some relief from her pain. I don't know if this is at all relevant but wanted to share it with you. I was just watching a programme on television about facial reconstruction and they had this one story of this man who had throat cancer and had RT treatment. Due to this the radiation has damaged his jaw bone and caused it to become infected. It took a while for them to realise this and they have now treated him for it. This may not be the case at all for your daughter, but I just wanted to mention it, just in case they had considered this as a possible cause.
I would have thought cases like this are extremely rare and maybe his treatment had this risk associated to it.
Hope you don't mind me mentioning it, I don't want to worry you or anything.
Take care X
Thanks
Hi there.
Thanks for getting in touch, it means a lot.
Hope you are doing OK. Keep smiling x
Hug
We are coming down on the cabergoline because my tumor is dead.
I had a lot of pain all over my head during my pregnance because my tumor got so big it was putting pressure on other parts of my brain. The medication does make the tumor go down in size and usually works pretty fast. So yes she could be getting some relief from the medication.-
Good Luck
When I was coming down on my dose of cabergoline. I had a lot of breast pain. It went away after about one months cycle.
Hope that helps.
Rae -
Hug
Hi, I'm so silly, just realised that I could have easily seen you yesterday on Garrod Ward as I was there all day having my blood tests taken! So annoyed with myself for not reading your message earlier, only read it today! Maybe you saw me in Francis Fraser during the morning or later on in Garrod Ward. I was going backwards and forwards to work inbetween the blood tests, rather than sitting and waiting there. Must admit feel a bit drained today as maybe it was a bit much too soon.
I so hope your daughter's tumour isn't growing again due to the Pegvisamort. I'm going to ask for print outs of my test results now, I didn't realise you could ask for that. I didn't get a report from the MRI scan either. Did you ask Professor Grossman for the results or did he volunteer them?
It must be so draining for you all, you've done everything you possibly can to get rid of the disease, and left no stone unturned. What more can you possibly do.
I'm only starting out on my journey with Acromegaly. I think I've had it for over 15 years, but who knows? I've had the drugs to reduce it and just had the surgery, but having read so much on here, am not getting my hopes up and expecting to be cured, as I now realise how rare that seems once you have a macroadenoma.
If you have access to your mail, maybe we could meet up for a coffee, I could come over and meet you near Barts, tomorrow or Friday.
How would we be able to contact each other, is there a safe way of putting our phone numbers down?
It would be lovely to meet up
xxxx
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Support Groups
Close Acromegaly
I have a daughter with acromegaly diagnosed last year, still remnant left, on Lanreotide autogel 120mg every 3 weeks
Treatments
- Dostinex Not Working
- for the first 3 months levels went down to GH 4, next check GH 12 so may be taken off of it.
