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.

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

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!

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...

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!

First Anniversary

Well, exactly one year ago I was diagnosed. Happy anniversary!!!

I feel quite well, because I think I am recovering quite easily from the second operation (maybe the previous experience is helping). If someone had told me one year ago that today I was going to feel this way, I would have been quite happy!

Meeting Jason

Surprisingly, I had the chance to meet Jason last week. He and his wife had some time before taking the plane, so we met at Barajas Airport here in Madrid. It was a great experience!

Back at home after the second surgery!

You can see me at the Hospital, two days after the operation . I had a great "tamponage" in my nose, with a small cord so that the neurosurgeon could remove it (several days later)


So finally I am back from the Hospital! I went there on May the 29th, had the endonasal surgery on the 31st and came back home on June 8th!

It is so so different to face the same situation for the second time... It is so easy, knowing how you are feeling! Everything went as planned, except from the surgeons, who said that they expected to remove more than what they were able. Anyway, all that is removed is not doing bad in my body, so I have to be happy for that. Next step is Radiotherapy (again), but first I have to wait to have the blood tests and MRI done, I suposse they will be after the summer.

I do not know how much there is still in my head since I have to wait for three months from surgery to do a MRI, and I still have to receive the formal report from my estance at the hospital, but I feel quite strong, and the headaches are not too bad.

My only medication now is Cortisone, just in case they have hurt my pituitary funtions, and some pain killers.

Preparing for the second surgery

On April 24th I went to the Hospital:

- First I visited my Radio Doctor, who was very upset with the rest. He told me that the MRI where they have seen the "movement" of my tumor is the one from January. He told me that as they won't be able to remove everything (because it is very big and very close to critical tissues), I will have to go through radio anyway. He was mainly bothered because all the time they have spent preparing my sessions has been thrown away.

- Then I went to see the Endocrinologist, who was very happy. He told me that the more tumor they can remove now, the better for me, because that mass creating GH will be reduced (there will be fewer bad guys doing bad things), and because the Radio is supposed to be more effective if it is done to a smaller volume. He even told me that if I had low GH levels (now it is 29) after the second surgery, maybe it could be controlled with meds (no Radio!). He told me to talk to the Neurosurgeons so that they could explain me the surgery.

- So, I went to speak to the Neurosurgeons. It seems that as my tumor was so huge, it had grown downwards, upwards and sidewards. With the first surgery (transnasal), they removed all they could from the lowest part of the tumor, so the empty space it was left, now it has been refilled with some tumor it was above, they say it has "fallen down".
They have confirmed me that the operation is exactly the same, and that there are exactly the same risks than before. They also told me that I will surely need Radio, because the tumor is mixed with the dura somewhere, I think, but that the smaller it is, the more effective the Radio will be.

I have scheduled the pre-op tests for next Tuesday (May 8th), and then I will speak with the Anaesthetist, and then I will be operated! That simple!

I am quite scared but I suppose that is normal. I think that doctors do the best for me, but it is as if I were back to last October again, and this makes the process longer and longer. I am also scared because I have my 29 ng/ml of GH bad guys swimming freely in my blood and doing bad things, and this also worries me. But I know that soon this will be done.

The radio - and the day after

So, I went to the Hospital to have my first session of the 25 planned of "Fraccionated Stereotactic Radiotherapy". They were very nice, as always; they put my personal mask, and the treatment started. I felt a strange flavour in my mouth when it started, it was quite strange. But I felt no pain at all, or sickness, or dizziness. In ten minutes it had finished. Everything was perfectly normal. I was told to come back today, as it was planned from Monday to Friday.

I have gone to work this morning, as usual. Everybody has been very kind asking how I'm feeling. But then, my mother has phoned me:

My endocrinologist has phoned home to tell me that they are operating me again. He and the neurosurgeons team has been looking at some MRI or CT Scan (I do not know which one) and have found out that the tumor has moved. It is so incredible, it has changed its position so now it is accesible to have a second surgery. He has told my mom that I have to go on Tuesday Morning to see him and he will explain everything to me. He has also said, of course, that I should not go back to radiotherapy, maybe in the future I'll need it, but not now.

I still cannot believe it, I think it is good that they want to operate me again.

The first day with Radio

So here I am, finally updated!

They phoned home yesterday to tell me that I should go today to the Hospital. So, today is my first day with the Radio. I suppose that I will feel nothing. I am very happy and also very nervous, in one hour it will be done. I am sure that during these 25 sessions it will become a rutine, but today I'm quite nervous.

I will keep you informed!

Preparing for Radiotherapy

Winter

The operation

My operation was set on October 16th. I went to the Hospital the week before in order to get all the preop tests done, and Doctors also told me that "it" hadn't reduced with the meds. They explained to me that due to its size, it had expanded upwards (pressing the optic chiasm) downwards (invading spheniod sinus) and sidewards (invading both cavernous sinuses, and pressing right carotid artery). Apart from that, my GH was 33.60 ng/ml, which was even higher than in June. These were wonderful news!

There was also the possibility to have the operation through my forehead, but they would see in the Operation Room. Really calming!

Anyway, there was no choice, so I just fell asleep, and woke up! And it was over! I was in the ICU, my nose filled with lints and a great pain in both sides of the back of my head. I touched my forehead and happily could find out that there was nothing... I asked a nurse if I had something in the back of my head and she touched just two bumps, she said that they had probably been caused by something to fix my head to the operation table. That was great because it was the only pain!

In the ICU I was connected to a machine to control my heart beats, my blood pressure, the oxygen in the blood and a tube to pee. I could hardly move, but I was happy. Slowy I was waking up from anaesthesia. Later, my Neurosurgeon came and told me that it was very soft so they had been able to remove a great part of it, by the nose. In the visit time (from 18.00 to 18.30) my parents told me that I had been inside from 9.00 am till 14.00, for what Doctors had said to take just two hours. Also came in to see me my grandma, two aunts, my brother, and two friends... it was great to see them, and all of them told me that I looked great!

I spent the whole night in the ICU, it was long and a bit sad, because I could see the rest of the people who were there and all of them were very sick... This is when you realize that, although you have had a terrible luck, there is a lot of people who is much worse than you.

Next morning they took my to my previous room. They found insipidus diabetes (I had to pee one week in bottles) till they decided that I was cured. I went home on October 25th, with a new round of blood tests and an appointment withmy Endo for November 28th.

The summer

The day after I came out from the Hospital, I went to a Funfair and had a ride on the roller coaster in Warner’s Park, near Madrid. It was HORRIBLE. Something moved inside my head and it started hurting so much… the ride was horrible. I came down and the pain stopped, but after that, each movement in my head caused me pain. I went back to the hospital, and they made me a CT Scan, to see whether the tumor was bleeding. Fortunately, everything was normal. The doctor told me that I wasn’t supposed to go to Funfairs. I thought that someone could have told me before about it. As the days were passing by, the pain started to dissapear, but it took it two weeks to dissapear...

The summer was quite long, let’s say. The Somatuline Autogel shots caused me, apart from a pain in my back, strong diarrheas, and I also was a little “feverish”. I was worried about my temperature, but I went to the doctor and he told me that maybe they were caused because my tumor was reducing… Well, it was not a summer to remember!

I had an appointment onfor the 15th of September to have a new MRI done, to find out whether I had had the luck to be in the 30% of the people whose tumor reduces. The picture on the left is from that day. I also had scheduled some more blood tests on the 28th of August to see how my GH was (IGF1: 477 ng/ml, GH:33.60 ng/ml)
Also, I started taking pictures of myself from time to time, to see if something was changing.

Diagnosis

So, I went to the Neurosurgeon with my mother on 20th of June. He told me that I had a pituitary tumor, that it was benign and that I needed to stay at the Hospital several days to have some tests done. It was quite a shock for me. I was told that there was no room at the Neurosurgery Wind, so they gave me a bed at the Endocrinology Wind. I didn’t know that it was related to the Hormones! As soon as I was given a bed and changed my clothes, a Doctor came in and told me that I was suffering from Acromegaly. He didn’t know who I was or why I was staying there. It seemed that my face was so acromegalic, and he explained a little about my disease, and all the changes that were supposed to have happened in my body.

I stayed at the Hospital for 10 days. I have to say that all the doctors that were passing by, told me that I had acromegaly. This made me sad, because my face is so obviously acromegalic… And nobody had told me before. My parents took to the doctors some pictures of me from the previous years, and they told me that my face had started changing ¡10 years ago! I had all these blood tests done, an MRI, and I was told that it was so huge that I could not have the surgery done at that time. They told me it was too risky because of it size and position (compression of the carotid arterys). So, they prescribed me “Somatuline Autogel 120 mg” shots, once a month, during 4 months. I had a 30% chance that with this medication the tumor reduced. And I was told to be back at the Hospital in October, to have my surgery done.

They also gave me the results of the tests:
GH: 32.20 ng/ml
IGF1: 734 ng/ml
Dimensions of it: 4.5cm x 4.5cm x 3.5cm
And I do not know how to translate the medical name for the lost of the upper outer quarter of the visual field in each eye, due to the compression of the optic nerve.

Pre-diagnosis

So, I got an appointment with the Neurologist for May 11th 2006. He made me a lot of questions (he even asked me if all my family was that tall, since I am 1.80m); he told me "It's surely stress", but he told me to get a CT Scan.

Around one week after my CT Scan, the radiologist phoned me and told me that I should go the day after to have a CT Scan with contrast, urgently, even without appointment. That was the point when I started becoming concious that there was something in my head. I went to the hospital to find that the machine was broken, after waiting 4 days, I could have it done - the radiologist confessed me that it could be something.

One week after the second Scan, they phoned me again, to tell me that I should ask for an urgent appointment with the Neurosurgeon. Those were the worst moments, because I knew that there was something in my head that should be treated urgently. I also was calmed becaused I wasn't told to go to stay at the Hospital. In my Neurologist report, it was said that it seemed to be "Meningioma".

I had to wait one more week till I went to the Neurosurgeon, it was 20th June, 2006.

The beginning: The Headache

Around October 2005 I started suffering from very strange headaches: they appeared always at night, just behind my eyes, I was feeling a strong pressure... almost unbearable. The pain was so horrible that the only way to be ok was going to bed and try to sleep.

At the beginning I didn't think much of it, since it used to happen "sometimes", but the headaches became more often and they were lasting longer. By March, one day the pain was so strong that I went to the doctor. He told me that he was sure that it was stress but he also told me to go to the Neurologist.

Blog's Posts

As my intention is to write all the story of my illness, and most of it I have already been through it, I have thought of writing a different post with each step I've walked. Dates won't be correct, but I think it is a good idea in order to follow an order.

So I will start in the beginning!

Hi everyone!

Hello all!

After all this time, I have found the courage to tell my story. I am creating this blog in order to share with everybody all my experience and feelings with this disease.

I am from Spain, so I'd like to apologize if my English is not very good some times.

I will come back soon...