What is Acromegaly
Acromegaly (from Greek akros "high" and megas "large" - extremities enlargement) is a hormonal disorder that results when the pituitary gland produces excess growth hormone (hGH). ...
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Tumour Regrowth
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I was just having a discussion with a work colleague and voicing my concerns that I think my Acromegaly has become active again after surgery a few weeks ago. I'm in no rush to be given the bad news, and am not due to have my tests repeated again until December.
She asked if the tumour were to grow back again, does it grow at a slow rate the same as before, or is the growth accelarated second time round. It must be a difficult thing to answer conculsively, as I've probably had acromegaly for the last 15 years - and there's no way of knowing how fast the tumour grew. It might have been the same size for the last 10+ years? Now the endo's know what our problem is and what to check, they will monitor growth easily. Has anyone got any information they can share with us about regrowth and time factors, also I'm concerned that should I have to be maintained by drugs, some of these apparently can encourage regrowth, has anyone had any experience of this? Thanks Posted on 10/26/09, 07:10 am |
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Hi Shelley,
I dont know anything about regrowth, how fast how slow the tumour can grow, I do know that Prof. said Pegvisamont can sometimes make the tumour grow, but I think the other drugs dont have the same effect, but not 100% was also told that if you have had radiotherapy there is less chance of this, but I know someone who had Radio and surgery plus meds,(Pegvisamont) and his tumour has grown, and that is so sad, and such a worry, we just never know, with this disease, we learn things every day, and I also think the doc's do too. 
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Hi Spiegal
Thanks for your reply, I'd read that Pegvisamont can cause or accelerate regrowth but it's not a regularly used drug and they will try all the other alternatives first. I may be worrying unnecessarily and it is less than 3 months since surgery, but we know the symptoms all too well, and I'm starting to notice some of them again. Let's hope Pegvisamont works it's magic for your daughter and she gets some relieft from this facial pain.
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Hi Shelley,
Im sorry that you are having symptoms again,my daughters did disapear right away,snoring, puffiness, carpel tunnel, and have not come back, but the pain is still with her, face ear and neck, I wonder if there are any other people on the forum with this problem, everyday. a nightmare. Also even though the symptoms never came back, her levels were so high, its strange you would think she would have ongoing symptoms. I dont think ill ever completetly understand this disease, different day different ....
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What you might be experiencing are the EFFECTS of the GH which produce (in my case) the swelling due to accumulation of water.
I never had any drugs prior to the operation and it took my endo about 2 months to give them to me. the change was quite sudden! after the second application I had gone thinner! Regarding the speed at which it grows you can find it in the pathological analysis of the tumor they extraced. if the rate of growth was low to begin with then it will keep on being low. Hope this has been useful!
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I had an MRI about 7 months after my surgery which was completely clear - didn't not show any new growth. MY IGF-1 was normal but my GH had gone up a bit and I was put on Sandostatin injections for 6 months.My endo then decided to stop them for several months which I was unhappy about. After this pause I had a blood test which showed that my IGF-1 had risen dramatically and my next scan revealed tumour regrowth in the cavernous sinus. I had another scan recently but don't know whether it's got bigger. I'm now on Somatuline injections and even though they don't bring my GH and IGF-1 down they probably keep the tumour from getting bigger. My theory is that those months without any medication caused the regrowth but I might be wrong - it's hard to know. As Spiegal says we learn things every day. I hadn't thought of asking pathology whether they can tell. I have a lot of symptoms again but I also hate the side-effect of the injections; do not seem to get used to them.
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Hi ,
Iknow before surgery, they said the tumour was a Giant Macroadenoma, which was aggressive and invasive, and very quick to show, they dont think she had it very long so I take it this is a fast growing little bugger, surgery and radiation treatment 2 years ago, have failed to bring levels down, medication octreotide Lanreotide Dostinex, levels still high, although puffiness tongue size skin carpel tunnel etc, all went, strange the levels would not go down, Pegvisamont was given, and after 2 months, IGF-1 normal, GH is not tested while on Pegvisamont.I dont know if this has anything to do with GH facial pain etc, they said its the remnant tumour pressing on the trigeminal nerve,will we ever know, does anyone else have this ongoing problem, thanks for replying Andreas
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sorry Andresgro, thanks for replying
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