SaveVicky

€197,950 of €100,000 goal

Raised by 2,636 people in 10 months
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Who am I and why am I fundraising?
My name is Vicky. I am 43 years old. I am married to Jim and we have two children, Amelia, 12 and Darragh, 7. 

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I was diagnosed with cervical cancer in July 2014 and underwent an agressive regime of radiation and chemotherapy over a 5-week period. I have had almost 3 years cancer-free until I had a routine scan in November 2017 which showed a large mass of lymph nodes attached to my aorta which is inoperable. Because I have already received the maximum dose of radiation, I cannot have more radiation. And so,  my oncologists are only offering me palliative treatment. I have been given 12 months at the most with chemotherapy treatment and 6 months without treatment. 

I simply do not accept this prognosis and I am fighting with everything that I have in my power to live. I am researching clinical trials and alternative treatments and juicing, supplementing and following a strict alkaline diet at the moment to try to stop my cancer from spreading while I wait to be accepted onto a suitable trial. At the moment, I am waiting to find out if I will be accepted onto the followng clinical trial in Maryland, USA: US Clinical Trial Info This trial is my best chance of surviving. If I get accepted, I will be hoping to fly to the States in March.

I have fantastic family and friends who are doing everything within their power to help me out but we cannot do this alone. Neither I nor my family have enough funds to cover my treatment abroad which will probably run into hundreds of thousands. 

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And so, I am pleading with everyone who takes the time to read my story to please donate whatever you can even it's only €10 to give me a fighting chance to watch my children grow up and enjoy the simple things in life that we all take for granted until we are faced with not being around to enjoy the little things. 

All I am asking for is a chance.

Thank you for clicking into my GoFundMe page,
Vicky

Xxx
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The Good, Bad and the Ugly

The Good…
As per my last post, I FINALLY managed to get started on the immunotherapy drug that I have been chasing for the last four months! The generic name for the immunotherapy drug that I am on is Pembrolizumab. The brand name for the drug that I am taking is Keytruda and this particular version of Pembrolizumab is manufactured by Merck. I started taking the drug 5 days ago and I cannot believe how well I feel after only 5 days of taking it. It was not all plain sailing, however. I had a severe infusion reaction to the drug on Monday night. Jim and I put in a very long night at home which we will not forget anytime soon. I actually do not remember parts of the night as I was so delirious with a high temperature. As well as a high temperature, I also suffered the most awful chills and could not stop shivering. I also had shooting pains in my abdomen where my tumours are located so I believe that this drug is making its presence known to my tumours already and starting to break them down, hitting them hard. I would not like to have a repeat of what we went through that first night BUT if it means that this drug is working and shrinking my tumours, then, a few days of pain is worth the long-term gain of curing my cancer.

IF this drug works and shrinks my tumours, I may not need to go on a clinical trial. I simply would have to stay on this drug long-term to keep my tumours at bay. I have been told that they expect this drug to be licensed for cervical cancer in approximately 12 months time. Until then, I will have to continue paying for it myself.
IF this drug does NOT work and there is no tumour shrinkage after four sessions, then, I will need to bite the bullet and go on a clinical trial. This leads me to the BAD….

The Bad…
Unfortunately, the trial in Maryland is no longer an option for me. I am NOT eligible. I found out last week and have only plucked up the courage to post about it now as I needed the time to absorb the news. I managed to get down to the very last hurdle, a genotyping blood test called a HLA test. This clinical trial is looking for people with specific HLA markers. HLAs or Human Leukocyte Antigens are proteins located on the surface of white blood cells and play an important role in the immune system’s defence against cancer. The trial was looking for a very specific HLA type and, unfortunately, I did not have what they were looking for. It is as simple and as cruel as that! They were very nice about it and have offered me help to locate other suitable trials. I sent them information on the back up trial that I am looking at in Buffalo, New York, and they reviewed the trial information and told me that I should go for this one. The problem with the Buffalo trial is that it costs a HUGE amount of money, approximately $250,000 and that is just the cost of participating on the trial. This estimate does not include the cost of uprooting my family to move to Buffalo for an extended period nor does it factor in the cost of me getting sick while on treatment. For anyone who is interested in reading up about this clinical trial, here is the link: https://www.clinicaltrials.gov/ct2/show/NCT03108495

The Ugly….
Most of you will have seen the papers over the past few days and will know that I am currently taking a case against the HSE and another party which is being heard in the High Court. Some of you may wonder why I set up a GoFundMe page if I knew that I would be taking a case and most likely will be awarded damages. First of all, I was told that the case could take several months to even be heard and secondly, there is no guarantee that I will win my case. For legal reasons, I am unable to talk about the case until it is over, however, I would like to say that, if my case is successful and I am awarded damages, I have every intention of repaying the donations that I have received.

For those donors who do not want me to return their donations or for whom I have no contact details, I want to let you all know that, following my dismal experience of our system here for terminally ill patients, I would like to use any monies remaining plus money from my own settlement to set up a Patients Advocacy Service to help others to research information on their cancers including alternative therapies that may work, clinical trial options, new drugs that they may be able to get access to etc. I see it as a Patient Advocacy One Stop Shop. This is something that I feel very strongly about since I am frankly appalled that I was literally left to die once I refused the palliative chemotherapy treatment that was offered to me. I have already been inundated with requests for help from other cancer patients, who I am trying to help, while trying at the same time to fight for my own life. I would welcome and offers of support/advice on setting this up in the future when I am back to full health 

The End!
And so, this evening, I am shutting down my GoFundMe page. Outside of my family and friends whose support has literally kept me alive, my GoFundMe campaign has been THE most positive thing to come out of my terminal diagnosis. I have been absolutely blown away by the support that I have received. The financial support has allowed me to be able to pay for the immunotherapy drug that I am currently receiving, which will cost me €8,500 every 3 weeks. It has also allowed me to pay for alternative therapies such as Vitamin C infusions which are costing me €600 per week. It has allowed me to buy very high-grade CBD oil to rub into my tumours and to take orally. This is costing me almost €100 a day for the amount that I am using.
The GoFundMe page has also been a fantastic source of social and emotional support for me. People have been contacting me with advice and recommendations for alternative therapies or recommendations to help to keep me mentally focussed. I have had people sharing their own stories and that has been cathartic, both for them and for me. I will continue to post on my progress on my Facebook page so keep an eye on that for updates.

I simply cannot thank you all enough! To each and every one of you, THANK YOU for what your support has done for me over the past three months. I 100% believe that I would not be alive today if it were not for your support.
Vicky
Xxx
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The day has finally come. After 10 weeks of campaigning and fighting and lots of blood, sweat and tears shed along the way, I am having my first infusion of Pembrolizumab, a drug that is not yet licensed for my cancer.

I am the first cervical cancer patient in Ireland to get access to this drug. Thanks to all the donations from my fundraising campaign, I have enough funds to pay for this drug which is going to cost me €8,500 every 3 weeks. From my research into Pembrolizumab, this new immunotherapy drug has the potential to shrink my tumours and give me more options to find a cure for my cancer. It is a great day for me, for my family and for cervical cancer patients in Ireland who will benefit from my campaign for access to this drug should this treatment work for me.

Thank you all for making this possible Xcc
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Before I post my 'good' news, I just wanted to take the time to let you know why you haven't heard from me in over a month. I had no 'good' news to post and I have had a few rough weeks both mentally and physically with cancer making its presence well and truly felt.

The past few weeks has been very hard on me and my family. For my family, they have had to watch me slowly start to deteriorate and to retreat into myself once I had used up what little energy I had making phone calls and sending emails to fight for access to this breakthrough drug and to secure a place on a clinical trial. There are days when I am literally fighting with my body and my mind to keep going.

This is the side of cancer that only close family and friends get to see. It is not a pretty sight. I would not wish this torture on my worst enemy. The waiting has been interminable and the fear has been very real. Fear of dying, first and foremost whenever a new symptom of my advanced cancer rears its ugly head but also fear of what am I going to do if I DON'T get access to Pembrolizumab, if I DON'T get accepted onto a clinical trial.

How will I be able to explain that to my children? How will my family cope if we no longer have hope?
Hope is how.
Hope is what gives life meaning.
If we don't have hope, we have nothing.
So, I have had to hold onto hope even if, at times, it felt as if there was no hope for me.

There is always hope...

And so, this week, I have not ONE but TWO pieces of good news to tell you about.

First of all, I got word from Maryland that my tumour has tested positive for the strain of the HPV virus that they are looking for. I have the HPV16 strain of the virus. I am now only waiting on ONE more test result. The clinical trial is looking for a specific gene. A HLA blood test will confirm this. I should have my results by the end of next week.

Secondly, after weeks of me campaigning hard and using every avenue open to me to get access to the drug I need to give me a chance of surviving, I got a phone call from my oncologist to let me know that St. Vincent's Hospital have finally agreed to give me access to Pembrolizumab.

And the best part - I start next week :)

YOUR money will go towards paying for this drug since I will have to pay for every dose of the drug that I receive.

YOUR money will give me a fighting chance of kickstarting my own immune system to fight my cancer with minimal side effects instead of pumping my body with pure poison (aka chemotherapy).

YOUR money will make it possible for my family and I to go to Maryland if and when I get accepted onto their clinical trial without having to scramble around for the money to book and pay for flights, accommodation and living expenses for the 6 months that they require me to stay there for.

Thank You to each and every one of you who has helped to make this possible.

I will post another update after I start my treatment next week.

Vicky
Xxx

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Just got some good news while having my weekly Vitamin C infusion. Results are back from my Oncofocus test. My tumour has shown high expression levels for PD-L1. What this means is that my tumour will respond to the immunotherapy drug Pembrolizumab. Next step is to get on it. This is where some of the funds raised will go. Thank you for making this possible

Vicky
Xxx
+ Read More
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€197,950 of €100,000 goal

Raised by 2,636 people in 10 months
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