I am back and still alive(just)

Carol H · 11-28-2007, 07:09 PM

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 appreciated- thank you all again for being there for me.

11-28-2007, 08:22 PM

Dear Carol,

Please hang in there. I hope there's some way that your doctor can find you Tykerb sooner than January. Are there any doctors that can mail it from the U.S.? Or perhaps he can find it in one of the other EU countries? It's amazing to me that you can be so gracious and articulate with all that you're going through right now. My wishes and hopes are with you and your family.

suzan w · 11-28-2007, 08:37 PM

Dear Carol, You are sure going through alot, thank you so much for updating us on what is happening. It sounds like you are a mighty fighter, both for yourself and for your family. I do not have any advice or input for your upcoming doctor's visit, so I will be sending along prayers and hugs!

Mary Anne in TX · 11-28-2007, 09:29 PM

Hi Carol!
God bless your upcoming battle. What a mom you are to provide for your kids so well. A move, a battle, and now home with your family. Best wishes for you victory. ma

janet/FL · 11-28-2007, 09:32 PM

Carol
I was sitting here wondering what to say to you. Then I looked at Susan W.'s post above and she ended it with--
"fear is a reaction, courage is a decision"
You are very courageous, in fact, if I looked "courageous" up in the dictionary, I am sure your name would be there to describe it.
Wishing you the best,
Hugs

Jean · 11-28-2007, 10:34 PM

Dear Carol,
I remeber your posting from last year. I am so sorry to hear your news.
When you see your Dr. on Monday - can you ask him if he can give you Tykerb off label? This way you would not have to wait until Jan.

I will keep you in my prayers...
jean

Lolly · 11-28-2007, 11:04 PM

Carol, it's good to hear you're settled in and family happiness is so important in the fight. I hope you saw Patty Z's response to Tricia's earlier post today; Patty has some encouraging words about Xeloda and Temodor.
I hope you can get some relief from the bone pain, and please stay in touch as you feel able. Your consult Monday will be on my mind.

<3 Lolly

Cathya · 11-29-2007, 01:23 AM

Carol;

It's wonderful to hear from you and I am so happy that you are all settled in Ireland. I remember the posts you made talking about your plans. I just wanted to suggest that I think you are right in staying on herceptin. Even if you have some progression on it I don't think it's safe to be off especially with such an aggressive situation. Please do keep us posted as you are able. God bless.

Cathy

chrisy · 12-06-2007, 02:55 PM

Carol, sounds like you have a good plan. I agree, I'd ask to continue the Herceptin since you are NED below the head - which may very well be because the Herceptin IS working.

Also doing some radiation to help hold the brain lesion until you can get the Tykerb while in the meantime adding some chemo in the form of Xeloda. It sounds like your team of doctors is in the fight with you, that it good.

Will be thinking of you.
chris

mamacze · 12-07-2007, 10:27 PM

Dear Carol,
Your journey from Scotland to Ireland is nothing but an incredible story of an angel with a brave courageous heart. How heartened I feel knowing you finally have access to care and hope for a turnaround. You are settled and your children are in a comfortable routine; you are near your family; now you have the peace you need to focus on YOU. Stay on top of your game; you know what next steps are best for you....stay as healthy as you can until you get that Tykerb....ride the tiger; you can do this. Please stay in touch and let us know how your consult went.
Love and Light,
Kim from CT

tousled1 · 12-07-2007, 10:54 PM

Carol,

What a battle you have had to fight and continue to do so. You are a very courageous woman. I agree that you should stay on the Herceptin until you have access to the Tykerb. My prayers are being sent to you. Please keep us posted.

jones7676 · 12-08-2007, 07:52 AM

I agree that you should stay on the Herceptin....I hope they get you what you need real soon!

Carol H · 12-11-2007, 01:40 PM

Thanks for all your kind and practical advuce - my consultant said he would not consider returning to Herceptin as it id obvioudl not wscorking as the Brain Tumour is growing daily and the bone dusease is quite bad =most of my rib cage is dideased and started on Xeloda 7 days ago and so far so good -no major side effects but very veryb tired andHoping to receive Steretactic receive Stereotactic rads asap but need to be off Xeloa for atr least 7 days before I can get thid specialist Rads =very tired 3night so off2bed - youare all such tremendous help and support. GFood Night

tricia keegan · 12-12-2007, 02:36 PM

Carol I'm glad to hear the xeloda is at least being kind to you and hope it continue's that way. I sent you a link for a website Patty Z posted so check it out if you get a chance as it's specifically for brain mets.
As this year comes to a close you can feel proud you've accomplished so much in '07 and still coming up fighting against this disease...I hope the Tykerb will be a valuble weapon to you in '08 so stay positive and I hope this Christmas is a peaceful and happy one for you and your family.

Jade · 12-13-2007, 11:07 AM

You deserve a Hero Award for all that you've accomplished in the last couple of years for those you love. You are so thoughtful and kind to post for us when it is a struggle for you to get through each day. I'm hoping, wishing, praying for a major healing 'intervention' for you, divine would be nice, to give you what you need to bring peace and comfort to each day with your loved ones, including kitty. The beautiful Irish countryside is good for the soul, may it lift your spirits and give you additional strength to win this battle.
With caring thoughts of you,
Jade