SOS. Save our Susie

Team fundraiser

Susan Cosnett and Conor Cosnett are organizing this fundraiser.

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Greg calls it S.O.S. “Save our Susie”

Hi my name is Dr Susan Nicholson Cosnett married to Dr Greg Cosnett those of you that might know me from our private GP practice in Ballyconnell Co.Cavan.

My Story

I never thought I would be asking for this kind of help, but as Bob Marley who died in 1981 of the same type of cancer as myself said "money can't buy life" but actually in Europe in 2024, money can help my situation to get an amazing chance of survival!

My cancer is a rare, genetic ALM tumour (not related to sun exposure) which is unresponsive to conventional chemotherapy.

The AVL cancer hospital in Amsterdam which I have visited, has approved treatment for me, unfortunately Ireland does not offer this treatment and can do no more for me. I have a very rare tumour amongst fair-skinned europeans. They said I am strong enough right now for TIL therapy but my time is running out. I am humbly asking for your help

I spent my working life helping people in my small family practice which Greg and I set up together in 2005. We bought & funded this to help everyone we possibly could.

My own cancer was very hidden until very late. It appeared as a thin pink line under my left toenail towards the skin on the top of the toe. It looked like a thorn had got in there and when the biopsy was done soon after finding this, it was shocking to hear, malignant melanoma already grade 3!! Acral in type which grows down into the toe before it can be seen in the nail. It had already spread to my lymph nodes in the groin when my toe was removed 6 weeks later.

It was not caused by sun exposure but a fault in my immune system. I was a real ‘nature baby ‘who never smoked or drank alcohol or took food additives colouring agents etc. I loved to cook and Greg grew organic veggies and we have apple trees, berries, hens etc.

I had 12 months of Immunotherapy in Beaumont Dublin and multiple full body and brain scans. Shockingly there was no stopping this aggressive cancer. It spread to both lungs and my liver and despite 4 sessions of double Immunotherapy it marched on. There is no realistic treatment left here in Ireland and it is now a death sentence. The secondaries in my lungs and liver are growing and each time I go back to Beaumont Hospital clinic to hear the scan results, the news is bad. This type of tumour is now very highly likely to spread to my brain . If this happens it may be too late for any more therapy. Chemotherapy doesn't work well for this tumour. There is nothing left in Dublin.

How your donation will help

Amazingly a new therapy called TIL which is 30 years on the making!! has come into the world of medicine just in the nick of time for me. It is called TIL therapy. It is not available in Ireland. It has been done in trials in USA for years with great results. Patients can get a 30% plus chance of full cure or a 50-60 % chance of progression free survival. It is being done in a few specialised centres in Europe including Switzerland, Finland, Denmark and especially in Holland where the doctors work with their whole team to bring new hope back to patients like myself.

They are at the AVL Cancer Hospital in Amsterdam and I met them on 10/07/24. They are waiting to help me. I am on their list to come in soon for screening and surgery to take a piece of tumour tissue from my lungs and liver and grow the TIL cells from my tumour in their lab. When they have hundreds of thousands of cells in the lab beside the surgical theatre, they infuse the cells into my veins. A week before the treatment I will be given strong Chemotherapy to knock back my bone marrow and make room for the new TIL cells. After I get the cells I will be given Interleukin to boost up the number of cells in my blood stream to millions and billions… to fight the tumour. I will be approx 4-5/6 weeks in hospital. There is a gap when the cells are growing in the lab where I will be at home but after 4/5 weeks when they are ready and I get Chemotherapy to make room for them I will be the girl in the bubble for a while.

TIL has not been fully given the go ahead yet in Europe. The FDA has approved it fully in America(February 2024). In Amsterdam , so far, only patients with grade 4 malignant melanoma who didn't respond to Immunotherapy are being given TIL therapy on compassionate grounds before the full EMA approval in 2025. In Amsterdam patients are given it on their basic medical insurance, or from donations if they need.

We will now need up to €150,000 for the TIL and the hospital bills.

On the matter of payment, I have been given an official refusal by the HSE and LAYA Health Insurance as they are waiting for full EMA approval in 2025. Am I too late or too early?

TIL therapy is tough and I am going to embrace it in an attempt at cure..In my shoes you would do anything to live.

I am one of the first people in Ireland to get this treatment for my rare cancer, which WILL be a standard of care in the very near future. The cure for cancer is just within our grasp.

In the very very near future it will be used for curing late colorectal, cervical and head/neck cancer.

I was hoping to start a Well-woman, cancer surveillance and dermatology surveillance clinic in 2021 when I got this terrible diagnosis. I am full of life just waiting for this tumour to spread to my brain. My husband Greg, my greatest friend with whom I am with for over 32 years is distraught as we wait for my deterioration.

My youngest son, has struggled with epilepsy since the age of 6 years old and he hopes to be a cell biologist one day and I would love to live to help him in his struggles. Our two other young adult children are at the beginning of their lives. I feel I just cannot die. I am sad at the prospect of never being able to dance at their weddings, to see any of my own grandchildren or to help them all through the trials of life. I have a lot to give. I pledge to help anyone I can with cancer and that any unused Go fund me money will go to help others in Beaumont Public hospital…this year of hope.

We are so very grateful and sincerely appreciate your help.

I have more to do to help others get the treatment they so well need.

Yours Susie & Greg