Some update - after summer

First of all, I would like to thank you all for your comments and e-mails. It is great to find that we are not alone – as I thought at first. It is great to think that maybe all this thing is helping someone somewhere.

This has been a great summer: no operation – no hospital stay – no mum’s hospital stay. I have been to wonderful Spanish beaches (the picture is a lovely one in Almeria), I have rested sooo much…


I am going to update my medical status:

- I had some blood tests in June with bad news: GH has dropped to 23 but IGF-1 has gone up to 649. My endo has increased Somatuline Autogel to once every two weeks, and prescribed me also Dostinex. We will see if it works with next tests. Dostinex is used for Prolactine secretor tumors (and my Prolactine levels are normal!!) but she told me that it helps reducing GH levels in 15% of acromegaly cases.

- I also had another RMI done; IT still has the same size: radiotherapy doctor told me that it is still too early to see it shrinking (but it will do soon!)

- I am also having some jaw pain when I open my mouth too much – mainly when I yawn, so I went to the maxillofacial doctor, and he told me that it is because my jaw is growing and my muscles stretch longer than their normal length. He prescribed me some medicines for the pain but I do not find them necessary. He also told me about having surgery in the jaw because now my bite is completely different compared to some years ago (and it is getting worse) but nothing can be done until my GH is stabilised.

I am quite scared of any other operation, because a friend had this operation (not acromegaly) and she had a looong recovery with a lot of pain… First thing to do is to get GH/IGF-1 back to normal ranges, and later we will see. I am going back to see this doctor in December.

Basically, next meeting is Sept 25th (NEXT WEEK!!) to have blood tests, on Oct 20th I am visiting my endo, and later in December I will have a new RMI and see Neurosurgeon, Radiotherapy Doctor & Maxillofacial Doctor.

In general, I find myself quite alright, I do not have any strong pain and my headaches are minimal – no need of painkillers. I am getting used to the medication – my body is tolerating well Somatuline every two weeks. I think that if any of you is going to have it, do not be afraid. Once shot every two weeks is ok! I am looking forward to find normal levels but I have got used to it, I have started “living with” acromegaly and that helps me continuing with my normal life.

Happy second anniversary!

So, I was diagnosed exactly two years ago!

To be honest, I feel happy of the things that have happened to me since that day... I have been through surgery twice, I have had a 28 sessions radiation treatment, and now I feel quite good!

Just have to wait for the good results to come...

Somatuline Autogel

So I finished with radio on Jan 31st as scheduled, everything improved since I finished: I started feeling better and not being so tired, and after a couple of weeks later I was feeling ok.

I had some blood tests in March and GH & IGF-1 are not as ok as me, so my endo prescribed me Somatuline Autogel 120mg every three weeks until June, when I will have a new MRI, new blood tests, and visit the Radio Doctor, Neurosurgeon & Endocrinologist. By now I have had 3 shots (last on Monday) and have 3 more left until next visit to Endo.

I have not felt any particular change in me when I have had my shots, and of course I do not feel better with the pain in my ***... I suppose that I have to wait some more months till everything starts working. Anyway, there is no reason to complain! I have treatment!

Blood Test Results

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).

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.

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