JUST KEEPING YOU UP TO DATE WITH LATEST TREATMENT

[spanishanna]

Just keeping you up to date with what is happening here in Spain with my treatment.

My Oncologist decided to take me off the Cisplatin/Gemcitibane regime that was causing my bloods havoc, as I constantly was receiving blood or platelet transfusions. I had no appetite, lost so much weight and my cancer marker rose by 100,

The next decision was to put me on Avastin + Xeloda, this is a treatment for colon cancer, supposedly to treat the ever increasing pain, 24/7, in my colon area and also in the abdomen area. At the same time I weaned myself off the morphine patches as they were making me feel so ill and not having any impact on the lower colon pain, only helping the pain in the abdomen. I presently survive by taking Paracetamol and the odd Tramadol, but only when necessary. Although I do have an appointment with a pain clinic a week on Tuesday, the earliest I could get.

I was ALLOWED - wow - allowed 6 weeks off treatment to get my port a cath fitted and generally give my body a rest and started on my new treatment Wed of last week. The only side effects I seem to be suffering at the moment are a hugely swollen tummy at the end of every day and the inevitable constipation. Before going back on chemo I was also able to have a colonoscopy and a gastoscopy to see if there was anything sinister lurking that could be causing me all this pain. Thankfully all was clear, although my colon is in a bit of a mess due to the large amount of surgery I had and is more twisted and curved than it should be. This combined with the constant constipation could be causing some pain but my Onc is still convinced it is cancer cells trying to settle within that area, hence the new treatment.

I mentioned to my Onc. about PARP inhibitor trials, they are not available in Spain and it appears, through usual UK bureaucracy, I am not eligible for treatment in the UK as I Spanish resident. Despite living in the UK for almost 55 years and paying full Nat Ins etc. and also receiving a UK pension over here. We have actually been told what the British Government is doing is illegal as I am still a British passport holder and of British nationality. We have written to the European Commission to clarify this. Strange that I was able to receive treatment in York hospital at Xmas and they didn't even want to see my medical card. But guess this was because I was emergency treatment. My Onc is amazed about this, as he said all Spanish born citizens are allowed treatment in Spain even if they don't live here. Anyway first of all I would have to have a gene test to see if I am eligible for the trials, can't get this on the Health system here nor will the Insurance Company pay, so if I could get on trials we will have to pay for the test.

Anyway as all Ovarian ladies I plod on with new treatment just hoping that Avastin will again come up trumps for me. My Onc. has had a few of his patients off the drug and then resumed treatment some months later, they have all responded well so I hope the same happens to me. In the meantime I just want to be free of pain and actually be able to do some retail therapy again. When checking my bank account the other day I realised the last time I actually went shopping, other than food shopping was 17th Nov 2011 - sad isn't it !!

Love Anna xx

[LucyJ]

Thanks Anna for the update.

Is the swollen tummy going to be a long term thing? Hope it settles down once you are used to the 'new' treatment? Good luck at the pain clinic, I do trust they are able to recommend something to control the pain.

I follow your 'story' with interest, and compare the Spanish health system with the British one. Does seem unfair that you can't get any treatment in the uk whilst living in Spain. As you say you paid in to the system whilst you were here.

Best wishes for a good response to the treatment you are having and hope that you will soon feel fit enough for the delights of retail therapy.

xxx

[Hidden]

Hoping the Avastin+ works wonders for you, Anna.

It appalls me how hostile the uk law is, both to foreign nationals and uk people living abroad. The world is such a small place these days, but our law remains parochial!

You deserve all the help anyone can give.

Isadora.

[Hidden]

Hi Anna,

Thanks for the update ( and all the other information) your knowledge and experience is invaluable to us all ...( and an inspiration ) ... Hope everything goes well for you ... I'm off to the oncologist this morning.......three month check up after second line chemo.......It won't take long he only takes about three minutes with me (no wonder he missed the recurrence for over twelve months )

My best wishes to you love xx Gwyneth xx

[spanishanna]

Gwyneth, sorry you have an Onc. like this. Mine will spend as much as 45 mins with me, examining me and just generally chatting about new treatments, it makes all the difference. I believe if you have a great relationship with your Onc, which I have, it helps an enormous amount and gives you some hope. Good luck today.

Lucy, I don't know whether the swollen tummy is a side effect of the Xeloda, I shall find out next time I go to hospital. Also it could be the constipation. I am now taking a product similar to fibergel alongside my laxative to help get things moving.

Isadora, you have described the UK correctly by using the word parochial !! It is not as though I am asking for something I am not entitled to is it. We have an ex pats association here in Spain, who fight or the rights of British citizens in the UK .i.e disability allowances, heating allowances etc., I may get in touch with them if I get no reply from Brussels.

Love Anna xx

[BusyLizzie]

Hi Anna,

Thanks for the update and as said above, all the other useful info you have imparted.

Have you seen this link:-

pah.nhs.uk/files/c)%20Non%2...

And the bit headed 'UK ex-pats of other EEA member states, Switzerland or another bilateral arrangement country".

I hope Avastin is waiting in the wings to be your hero again!

Love Lizzie

X

[BusyLizzie in reply to BusyLizzie]

Sorry link does not work automatically, but if you copy and paste it all - it takes you to the document.

X

[Hidden]

HI Anna

If it turns out you are eligible for treatment under a trial here in the UK - are you eligible for the BMN673 trial I am on: clinicaltrials.gov/ct2/show... ? In the paperwork I have for the trial it asks if I would agree to genetic testing. I didn't need to as I had already been tested but it implies they would include testing (and fund it) as part of the trial. The other issue would be that you would need to attend the hopsital in the UK every week for tests for the first four cycles and also includes two separate weeks where you are at the hospital every day.

Best wishes

Sharon

[spanishanna]

Hi Ladies,

i Have managed to get both sites and have saved them and will read maybe later today. The trial you sent Charon I actually already have details of that trial, but where my Onc. is enquiring they do not do the genetic testing.

I have had a couple of bad days re abdominal pain, ended up having the emergency medics in 3 times in 12 hours. We started off with one morphine injection, second time was a stronger one and the third visit the works. Morphine drip with steroid added, anti inflammatory, you name it I had it. Woken this morning to the odd niggle, but I was told to go back on my morphine patches, which I hate, but have done so and hope that makes some difference.

What I have noticed in the Xeloda I have to take twice a day, it doesn't help as that bloats my tummy and makes it even more uncomfortable - when will they bring out pleasant chemo treatment ?????

Love Anna xx

[BusyLizzie in reply to spanishanna]

Hi Anna,

I am so sorry to hear about the abdominal pain - I am taking paracetemol myself now. I will try to add a blog about my situation update tomorrow which is not great either. At least you have some treatment looming though, which is excellent news. Hang in there Anna. Thinking of you.

Love Lizzie

X

[bosue]

Anna, only just seen your post, hope you are feeling better, thinking on of you. Sue x