The most important thing that has happened to me about acro during this time is that I've met Raquel, who is from Huesca (North-East of Spain) and she is one year younger than me (27). This is the picture of the first time we met.
She had surgery almost two years ago and now she is controlled with Somavert. She is really nice and she has came twice to Madrid since we first spoke, so we've met and we speak quite often. I am really happy of having found her... She is in touch with more acromegalics in Spain so she is "building" a network among us. But I will speak more about it in the future.
I have also been very busy with the medical evolution:
- I saw the MRI after the 2nd op with my endo and there are no noticeable changes.
- I had my blood tests at the beggining of October but somehow my endocrinologist won't give me the results until January 23rd.
- My endo told me that he would prescribe me Somavert while we are waiting for radiotherapy: this is because Somavert does not work on the tumor but on the GH receptors (or something like that) With Somavert you get high GH but low IGF-1. If you have Sandostatin or a Somatostatine Analogue it works directly on the tumor, and radio then is less efective. However, till Jan 23rd I will not go to see him.
- After that, I went to see my neurosurgeon, who told me that there was no need to wait for blood results. He said that with my tumor size, radiotherapy is needed anyway. He sent me to the radio doctor (here in Spain you need a doctor to send you to another, you cannot go directly)
- So I went to the radiotherapy oncologist (sounds scary, doesn't it?) but he is really calming. He also told me to start radio asap. So, I started with the radio preparation:
- The treatment I am going to have is "Fractionated Stereotactic Radiotherapy" which is done in 25 doses so that surrounding tissues are not radiated. I am using the mask they made for me in February. I had a CT done with the mask and an MRI (last Friday) so now they are mixing the images, making a 3D model of "it" and preparing the treatment so that they can KILL IT ALL!!
This is a picture of a mask similar to mine...
So, basically these have been all my steps in the journey to finish with the tumor. Now I just have to wait for a phone call to tell me to start radio! I know it is going to be long but it will come soon!
2 comments:
Hello,
I am new to this...thank you for sharing so much of your story...it is helpful...I hope that we can connect
mari
Almu,
I am glad to have the update and happy that you and Raquel have found each other, especially at this time when you are beginning radiation! That is a nice photo of y'all.
Also, thanks for the information you posted about the treatment you're about to have. The picture you posted is interesting. I haven't had to think about radiation for a while, but it's nice to be able read about your experience should I need it in the future...
I'm sorry to hear that the second surgery wasn't successful and I hope the Fractionated Stereotactic Radiotherapy (and the medicine) will kill the tumor off.
Keeping you in my thougths and prayers, Almu.
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