I am bak and still alive(just)
 

its been an amazing year - the last time I posted a thread on this site I was moving myself and my family to Ireland where my husband is originally from to save my life and get surgery that was denied in Scotland. With the tremendous help and support from members of this website I was able to do the impossible and sell our house in Scotland and move to Ireland, buy a house, get the kids settled in school and receive treatment here in Ireland.

Tricia is someone I met on this site and she has been an absolute Angel - without her help none of this would gave happended and without access to this support site I would not still be alive.

I moved on 6th Dec 2007 on a very rocky ferry journey with my pet pussycat in a cage in the lower deck, my husband, son and daughter - no ;#looking back - house sold inScotland, and moving in with my sister in law for a few months until House sale in Ireland processed and Derek (my husban) had to return to Ireland to sort out his work redundancy - I start to deteriorate rapidly each day with the brain mets - admitted to hospital in Dublin for observation then major brain surgery - they were only able to remove some of the tumour - receovery os a nightmare - didn't see my children for 2 whole weeks - spent xmas day eating scrambled eggs with no visitors as the ward was closed due to winter flu bug in hospital = then followed a weeks treatment of whole head radiotherapy and since then usual 3weekly Herceptin and 6 weekly Zometa.

Everything was going fine until recent scans have showed Brain Tumour growing again anf symptoms I have been having dizziness, headaches hearing problems in left side(where tumour) is - main reason for moving to Ireland was to get access to Tykerb/Xeloda trilas and surgery wasn't an option in Scotland so would have been dead if I had stayed there and the family support here is much much better and I will have peace of mind that my son and daughter will be ok when I am gone.

I have my dream house no in the countryside in Ireland with all my relatives within walking distance or only an hours drive or so to Dublin - Children have settled into school amazingly and my husband has a job now and everyone is very very happy and settled.

However was told yesterday that the brain tumour is very aggressive and growing quickly - do not meet all requirements to get on Tykerb trial as bone and brain mets too difficult to measure apparently but my consultant - an amzing man - Professor John Crown = has promised me that in Jan 2008 Tykerb will be licenced and he will get me access to Tykerb and Xeloda = but very worried that being left untreated until is risky and may be too late by January.

My consultant Radiotherapist said he was willing to arrange additional Radiotherapy in my brain(specifically where the tumour is) so meeting with Prof Crown next Monday to discuss my current options - they have stopped giving me Herceptin as its obviously not working - but maybe it is as my liver and lungs are still clear of cancer so will ask him maybe I should ask to stay on Herceptin on it until I start Tykerb and why not start me on the chemo Xeloa(capcitebine) as I know I am eligible to receive this along with some zaps of radiotherapy to the brain might keep the cancer at bay until Tykerb available - also bone mets quite bad in left legand received 4 daily dozes of Radiotherapy 3 wks ago but to be hinest the pain has returned and getting worse again this week so will have to make Prof Crown aware of this - maybe Radio didn;t work in leg or it takes a few weeks to kick in - have increased my steroid intake for now to alleviate and control my brain mets symptoms and take morphine regularly for bone pain, bone mets in rib cage quite painful.

Well thats where I am at present - sorry it was a bit long winded but I just wanted to thank you all so much - had problems getting access to Internet then forgot then remembered my passwords etc for this site and have read all of your marvelous replies to Tricias emails - you are all so wonderful and any advice/tips for Mondays meeting with Prof Crown much appreviate - thank you all again for being there for me.

Carol - all the best to you.It's must be frightening to have to deal with this, and it just isn't fair that Tykerb is not available. I wish you well.. Belindax

Carol,

Glad to hear that everyone is settled in Ireland. I can understand your anxiety about waiting until January when Tykerb will be available. Was wondering if you might be able to get it on a compassionate use?

Carol,

Your ability to keep a step ahead is amazing. You have been through quite a bit and seems like everyone getting "settled" was your priority and lets face it- a positive, huge peace of mind issue for many of us.

I will hope that Christmas comes early for you so you can get the Tykerb.

My best thoughts are with and your very supportive family. In many ways you are lucky to have such willing participants in this journey.

My warmest wishes for a cozy Christmas !

Maria

Carol,

Glad to hear you are settled in your new home, close to relatives. I have thought of you during this past year, hoping you were doing well. So far Tykerb/Xeloda has helped me. Starting the Xeloda soon, then the Tykerb in January may be a good option for you.

I had radiation to my hips over 4 mos ago. The pain and my hobble got worse during the treatments and continued for several weeks. I thought the treatments did not work. However, gradually I have had improvement. Now I walk almost normal and have infrequent pain. Hopefully, you will have improvement as the weeks pass. Sorry the pain is so bad for you. Thinking and praying for you.

Becca

I identified with your comments about feeling "settled" in your home. I was diagnosed while our house was being remodeled and we lived in a rental. It was only on the next block, not another country, but I felt so displaced and miserable to not be "home" while I was having surgery, beginning chemo, etc. So I am really happy for you (and me too!) that we are settled and can concentrate on getting well.

Carol, You have a had a bumpy year! Glad you are settled near family and in a home. Praying for a miracle for you as an early Christmas present. Will pray you get into the Tykerb trial before January. I know it's hard, but keep a positive attitude. You sound like a very strong woman. May God Bless you and your family.

Wow - that's some fortitude, girl! I started my Xeloda first for 3 weeks while I waited for the Tykerb to be approved, and I think it was a good way to ease into it, I have had very little side effect from the combo... and since they both cross the blood brain barrier, you can hopefully get some help from the Xeloda alone while waiting for the Tykerb. Best of luck and God's speed in your wait to get the Tykerb! In my case, T/X has erased my small brain mets without any radiation. I know everyone is different, but I am so very lucky and blessed that this combo has worked so well for me!

You are very courageous and strong. I am hoping that you receive the Tykerb early and can be on your way to recovery. I agree with tousled, maybe you can get it on a compassionate basis. So glad that you are all moved and settled in. I could not do all that moving while I am doing tx. Best wishes and warm hugs.

RE: still alive (Just)

We are all above ground today, thankfully. Thank you for reminding me how precious each day is. I will pray that you get that Tykerb ASAP! Merry Christmas and a happy, healthy New Year.

Hang in there Carol
 

Hi, Carol, I was stunned to read your story. What a lot you've been through, and I'm really glad that you found support here. This truly is a great place with the best kind of help, from others who can identify with your troubles AND give you important, even maybe life-saving information.
I live in London and I'm sending you best wishes and a hug or three across the Irish Sea.
Wishing you the very best of luck with it all
Caroline