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  Shelley62 (11/03/09)

  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
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  Rosie6 (10/29/09)

  Hi there.
  Thanks for getting in touch, it means a lot.
  Hope you are doing OK. Keep smiling x
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  Apple123 (10/05/09)

  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.
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  Good Luck
  

  Apple123 (10/05/09)

  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
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  Shelley62 (09/09/09)

  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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  Good Luck
  

  Shelley62 (09/03/09)

  Good luck with your meeting with Dr Grossman, let's hope he can come up with some good news to help. I'm there on the 14th, so we've just missed each other by a few days.
  
  x
  
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  Shelley62 (08/27/09)

  Hi Spiegal
  
  Here's some chocolate to take with you for your next visit. I haven't met Mr Grossman, but have heard a lot about him. Dr Akker is the consultant I'm under at Bart's and I must admit, even though I don't go to see him as a private patient, I've been really impressed by how thorough, helpful and available they are to patients when they need your help. I think your daughter and I are the lucky one's in terms of having an excellent team of professionals looking after us.
  
  Good luck with everything, and you never know, we might meet up in Francis Fraser ward or outpatients one of these days. I think my next appointment is Sept 14th.
  
  Take care - big hug to you and your daughter
  
  x
  Shelley
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  I'm With You
  

  jo888 (07/17/09)

  Wishing your daughter a speedy recovery.
  Take care.
  Jo
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  J0KEYJ (07/09/09)

  A hug is waiting for you and pass one onto your daughter.We are still doing carboot sales the girls get a bit of money I do laugh its like a comedy how we set up.You meet some people I laughed when the girls realized one of their tutors was the car at the side of us.I like doing them tiring and its hard work but in a way spending more time with the girls and the laughs weve had its been good.I hope you and you daughter are doing ok things I hope are getting a little better thinking of you both JJx
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  PapillonRoseBleue (06/25/09)

  so nice to think of the two of you in Venice. I'm glad that she went part time too. I'm sure that will help reduce some of the stress and fatigue. Thank you so much for the encouragement and the message. Hugs for you both. Rose

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