So, last Monday, I finally got my lab results from October! As I knew, my new endo told me that they are almost the same as before surgery.. so nothing new.
I have a new endo because my previous one has gone to a new Hospital it is being opened this year, but I also like my new doctor. We already knew each other because she has always been in the Hospital the days I have spent there. She has told me that I will have some more blood tests after Radiotherapy and will start treatment in March.
I also met another woman with Acro, she is 65 years old and was operated over 20 years ago in Peru. We spoke for more than one hour while we were waiting for our turn with the doctor. She was very friendly and we interchanged phone numbers.
Apart from that, I have to say that I just have 3 Radio Sessions left!!!!!!!!! I am really looking forward to finish them (on Thursday). My Radio doctor told me yesterday that now I will start noticing slowly the changes, and I am quite happy to hear that (at last).
Monday, 28 January 2008
Thursday, 17 January 2008
Radiotherapy - Day 18
First of all, HAPPY NEW YEAR!!
So today it is going to be my 18th day with radio - and I feel quite better than expected - of the 28 sessions that I am going to receive.
Main side effects:
- heartburn (finished with Omeprazol)
- red eyes (finished with eye drops)
- tireness (but I can go to work, study, go out with my friends... normal life)
- feeling of nausea ¿? as if I were about to vomit, but I haven't
I am not completely sure that every feeling is caused by radio, but since I am not sure I blame it. I visit my radio-doctor every Monday, so that he knows how I am feeling each week.
My machine is from Elekta, quite similar to the picture, the main difference is that I am wearing my mask! I thought that I was going to feel claustrophobia but I have got used to wearing it every day (it is just five minutes!) and I breath easily and feel comfortable.
Next Monday I have an appointment with my endo, so that he FINALLY can tell me my blood results from October!! So, I will update soon.
So today it is going to be my 18th day with radio - and I feel quite better than expected - of the 28 sessions that I am going to receive.
Main side effects:
- heartburn (finished with Omeprazol)
- red eyes (finished with eye drops)
- tireness (but I can go to work, study, go out with my friends... normal life)
- feeling of nausea ¿? as if I were about to vomit, but I haven't
I am not completely sure that every feeling is caused by radio, but since I am not sure I blame it. I visit my radio-doctor every Monday, so that he knows how I am feeling each week.
My machine is from Elekta, quite similar to the picture, the main difference is that I am wearing my mask! I thought that I was going to feel claustrophobia but I have got used to wearing it every day (it is just five minutes!) and I breath easily and feel comfortable.
Next Monday I have an appointment with my endo, so that he FINALLY can tell me my blood results from October!! So, I will update soon.
Tuesday, 18 December 2007
Starting radiotherapy (again)
So, finally I was called from the hospital! I am starting the treatment this afternoon. I suppose that nothing is going to happen, but I feel quite nervous.
I thought that due to the Christmas Holidays, they would stop treatments, so I was convinced that they would wait till January, but... the sooner the better!
I was so convinced, that I had bought plane tickets to go to Portugal with Raquel to visit a new acromegaly friend, Nika, who lives there! I had already imagined the beautiful post I would write when we came back!
Anyway, I will let you know about how everything is going.
I thought that due to the Christmas Holidays, they would stop treatments, so I was convinced that they would wait till January, but... the sooner the better!
I was so convinced, that I had bought plane tickets to go to Portugal with Raquel to visit a new acromegaly friend, Nika, who lives there! I had already imagined the beautiful post I would write when we came back!
Anyway, I will let you know about how everything is going.
Tuesday, 20 November 2007
Preparing for the radiotherapy
I am deeply sorry for not having updated this blog in such a long time... It's been too long but today it's the day!
The most important thing that has happened to me about acro this time is that I've met Raquel, who is a 26 years old Spanish girl. 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. I am really happy of having found her. I will tell you more about her in following posts.
I have also been very busy with the medical evolution:
- I saw the MRI after the 2nd op and there is no noticeable difference.
- I had my blood tests at the beggining of October but somehow my endocrinologist will give me the results on 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 in the GH receptors (or something like that) With Somavert you get high GH but low IGF-1. If you have Sandostatin or a Somatostine 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 having is "Fractionated Stereotactic Radiotherapy" whish is
The most important thing that has happened to me about acro this time is that I've met Raquel, who is a 26 years old Spanish girl. 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. I am really happy of having found her. I will tell you more about her in following posts.
I have also been very busy with the medical evolution:
- I saw the MRI after the 2nd op and there is no noticeable difference.
- I had my blood tests at the beggining of October but somehow my endocrinologist will give me the results on 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 in the GH receptors (or something like that) With Somavert you get high GH but low IGF-1. If you have Sandostatin or a Somatostine 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 having is "Fractionated Stereotactic Radiotherapy" whish is
Preparing for the radiotherapy (again)
I am deeply sorry for not having updated this blog in such a long time... It's been too long but today it's the day!
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!
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!
Tuesday, 25 September 2007
MRI after second surgery
I went to the Hospital on August 24th to have my post-op MRI. It is a strange feeling when you go to do any of these tests and know the results in advance: neurosurgeons told me the day after the operation that there was a lot of tumor left and I had no changes after (hands, feet, face look exactly the same).
But each of these steps always means that the end is approaching somehow. It means that I have to do one less thing, I suppose you understand...
The point in posting about this is that, while I was sitting in the waiting room for the MRI to be done, a woman in her 50's came in and sat down. Inmediately, I knew that she had acromegaly too. It was so shocking that I had to think for a couple of minutes before I went to her and said: 'Excuse me, may I ask you a question?' and as she was saying yes she was also saying 'you also have acromegaly, haven't you?' It was so amazing!!! We spoke for 5 minutes or so and I carefuly suggested to her the idea of keeping in touch, or trying to know/meet more acromegalics. She politely refused...
I thought that she was going to be as fascinated as me or even more (she told me that I was the first acromegalic person she had ever met) but she wasn't interested at all... I felt quite dissapointed, if I had met her one year ago (newly diagnosed), I would had felt really sad, but each one decides how to live his/her life, no?
That makes me feel so so so proud of having found you all, you have made me feel that I am not alone, and have helped me to understand my feelings... Thank you so much for being there...
But each of these steps always means that the end is approaching somehow. It means that I have to do one less thing, I suppose you understand...
The point in posting about this is that, while I was sitting in the waiting room for the MRI to be done, a woman in her 50's came in and sat down. Inmediately, I knew that she had acromegaly too. It was so shocking that I had to think for a couple of minutes before I went to her and said: 'Excuse me, may I ask you a question?' and as she was saying yes she was also saying 'you also have acromegaly, haven't you?' It was so amazing!!! We spoke for 5 minutes or so and I carefuly suggested to her the idea of keeping in touch, or trying to know/meet more acromegalics. She politely refused...
I thought that she was going to be as fascinated as me or even more (she told me that I was the first acromegalic person she had ever met) but she wasn't interested at all... I felt quite dissapointed, if I had met her one year ago (newly diagnosed), I would had felt really sad, but each one decides how to live his/her life, no?
That makes me feel so so so proud of having found you all, you have made me feel that I am not alone, and have helped me to understand my feelings... Thank you so much for being there...
Finally... some update!
I am so sorry I haven't written this whole summer... It has been quite strange this summer because my mum was ill and she spent almost the whole July at the hospital, and in August she was at home recovering. She is much better now.
So I haven't had proper holidays, just went to "Picos de Europa" in the North of Spain, 5 days. This is me there. I thought I would never be able to do treking so early after the op, but I was!
So I haven't had proper holidays, just went to "Picos de Europa" in the North of Spain, 5 days. This is me there. I thought I would never be able to do treking so early after the op, but I was!
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