Radiotherapy - how long does it take to work?

Re: Radiotherapy - how long does it take to work?

Postby plum » Wed May 30, 2012 11:42 am

Hi Mac
sorry to hear about the long haul that you have all had to go through. But thanks for letting us know becasue I suppose it means that these treatments do seem to work ....... eventually.
so we have to be patient. sigh. not easy.
May your daughter continue having more and more good days!
Plum
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Re: Radiotherapy - how long does it take to work?

Postby mac » Thu Jun 07, 2012 11:23 am

Hi Plum, have they mentioned Pegvisamont for you, everything my daughter was given never worked, we were getting worried, then Prof. Prescribed the Peg and levels dropped in a month to normal, she never felt Ny better in herself, she has had a hard journey like everybody else, some people when diagnosed are more fortunate, they have the op or take the meds and they don't feel too bad, others feel awful, my daughter had a lot of facial pain, the remnant tumour w as pressing on her trigeminal nerve, a nightmare, the tiredness was the worst no energy tearful stress etc, we went to so many doctors, she works pastime, then went home to bed for the last 4 years, hen the hyoid was tested again and it had gone from 24 to 11 she went on thyroxine 5 weeks ago, she has improved so much, so this is another thing to keep getting tested, the thyroid is a had thing to get sorted, as everybody feels different on a different number,they say oh the thyroid is ok level good, but if you go on a forum for thyroid you will see its like diagnosing Acromegaly, hard I kept thinking has her thyroid got anything to do with this, I'm now sure it had.Russell Watson was on the telly the other day, he's had 2 surgeries and steroatic RT after five years he feels well, and his tumour has shrunk, I remember a staff nurse at Barts of London telling me when she was first diagnosed, it will take her 5 yrs to turn a corner, well I think we have turned that corner, yes it's been a long time coming, but that doesn't mean to say that everyone will take that long, everybody is different, she takes a lot of medication, injects, but it's so good to see her smile again. good luck if you need any more info please feel free. Scuse typing
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Re: Radiotherapy - how long does it take to work?

Postby plum » Thu Jun 07, 2012 6:45 pm

Hi Mac
the endocrinologist did say that if things don't improve then they'll think of other treatments. but then he pointed out that my pct took such a long time to give permission for the lanreotide and they refused the cyberknife so he anticipated refusal for pegvisomant. and then suddenly a few months after that discussion i was called in for the cyberknife as they found an alternative funding source and i think that he is now waiting to see whether that will have had an impact before changing the drugs...
thanks for the suggestion about thyroid: my hair did stop growing and that could be linked to thyroid also.

it really is odd how there is such a difference in how people respond to the treatments etc... when i was in hospital for the surgery i was put in touch with a woman who had gone through the same thing about 10 years previously. well i asked her about her hands and feet and she said that they seemd to have gone back to where they were and that she was able to wear her rings etc. unfortunately my hands and feet are far from normal and i am even running out of options from the specialist shoe shop. does your daughter suffer in the same way?

plum
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Re: Radiotherapy - how long does it take to work?

Postby mac » Fri Jun 08, 2012 12:08 pm

Hi plum, she also had to take her rings off, also developed a little bit of a lisp, carpel tunnel, sweats puffy face, this all went down when she started the pegvisamont, rings are back and puffiness all gone carpel tunnel gone, it's the hormone causing all these problems,when you can halt the GH then it should stop, that's why you need to fight your corner as much as possible, where do you go for your endo ? Even try your local MP everything and anything could just help, I know it's tiring to do all these things, I did all of this for my daughter as she was too exhausted, but if there was someone that could help, have you tried asking at the foundation, they were so helpful to me in the early days. this must be so frustrating knowing drugs are out there and you can't have them, and they waste so much money on other things. take care
mac
 
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Re: Radiotherapy - how long does it take to work?

Postby mac » Fri Jun 08, 2012 12:11 pm

Hi again, alson meant to say that I've heard such good things about the cyber knife, they are progressing in so many ways, but sometimes I think they have the drugs and the radiation machines, and then they won't allow you to have the treatment. Aaaggghhh
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