Esther is trying to raise money to save her life with TILS
Some of you will already know about Esther Allen’s plight.
Esther, who is 43, a married mother of a young daughter aged 14 is a stage four melanoma fighter. She was originally diagnosed when she was 15.
Esther facing one of the most difficult decisions that I think any of us can ever have to consider. Her current immunotherapy is failing and her tumours are growing rapidly. The only treatment that may save her is TILS. There is a TILS trial available at the Royal Marsden in London, but unfortunately Esther does not qualify for the trial as she has had immunotherapy. The pharmaceutical company responsible for the trial will not accept her as a patient. There is no expanded access program.
TILS is available to Esther in two countries. The first country is USA where the treatment will cost upwards of £500,000. This figure is simply beyond Esther’s reach and she is having to consider the second option. This option is considerably cheaper at £120,000 – that in itself is fantastic news but it comes with a very alarming caveat. The treatment is based in Israel!
Esther and her mother, Jane Henderson have heroically started crowdfunding on her own GoFundMe page and there are several activities that have already been lined up to try to raise the money required for her to have the potentially life saving treatment.
There is a sponsored walk of 14 1/2 miles around Dronfield,organised by her husband, and I intend to go and support Esther on behalf of Melanomamates and any help we could give would be wonderful.
Please consider this request for support – it is such a tragic case.
UPDATE July 7th 2024.
Esther is now in Israel to commence her potentially Life Saving treatment
TILS is now an option for treating advanced melanoma. It’s an intensive, “one-and-done” treatment which has been approved by various countries but not widely available in the UK. The results of a recent landmark multinational study showed that TIL therapy holds promise for treating refractory metastatic melanoma and that it is the most reliable option after traditional standard-of-care therapies have proven ineffective.
TIL therapy capitalises on the power of a patient’s own immune system to fight cancer. T lymphocytes are immune cells that can recognise, target and destroy cancerous cells. T lymphocytes are considered to be TIL when they migrate to the tumor, but unfortunately, TIL are typically not able to mediate complete tumor destruction on their own.
The treatment involves surgically removing a portion of a melanoma tumor that contains the TILs that have invaded the tumor. The patient-specific TILs are then cultured and expanded (multiplied) in a laboratory using interleukin-2, a protein that promotes the growth and activity of other immune cells, such as TILs. Unlike CAR-T cell therapy, TIL therapy does not involve the genetic modification of immune cells; instead, it relies on the natural process of tumor rejection and amplifies it with a massive expansion in the laboratory. This process can take some time.
The Process
Once a sufficient quantity of TILs is available, the patient receives chemotherapy to temporarily deplete their immune system and “clear space” for the new army of TILs, which are infused into the bloodstream. Once there, the TILs circulate throughout the body to actively seek out and eliminate cancer cells while leaving healthy cells unaffected.
Side Effects of TILS
Patients would typically need to stay in the hospital for at least two weeks to receive TIL therapy. One reason is because the immune system is weaker from the chemotherapy they had before the TIL infusion. This makes it more likely for patients to get infections.
The TIL therapy also has other side effects, and some of them are like the ones people have after CAR T therapy. Others are caused by the drugs used to stimulate the immune system.
Side effects of TIL therapy can include:
- High fevers and chills
- Nausea and loss of appetite
- Headaches, dizziness, and other issues that affect the nervous system
- Feeling very tired and weak
- Low blood counts
- A buildup of fluids in your body, which can put stress on the heart and lungs
UPDATE July 28th 2024
There is great news from Israel that Esther’s T cells (fighter cells) are growing really well in the lab. So much so that they need to move forward with the next stages.
Esther will be hospitalised in Israel on 8th August for the next stages of treatment. Before then she needs quite a few tests.
She could have travelled back to Israel tomorrow to have all the tests carried out over there in the next 12 days but has chosen to get all the tests done in the UK. There are several really important reasons for this decision:-
- So that she is not away from Heidi and her husband for longer than essential and
- To try and save some of the incredible personal expense. These tests will cost nearly £10,000 in Israel. The fund raising efforts by all involved have been absolutely important and very generous BUT Esther, and her team, have to keep a very watchful eye on overall costs. It’s money that they don’t currently have to just “throw around”. Having the tests carried out in the UK will help keep the costs down and is a way of making each £ of donation go as far as it could.
The nest week will be spent charging around the UK getting all the tests carried out and then chasing down the results so that they can be sent over to Israel for the treatment to be continued and hopefully give Esther a chance at the rest of her life.
UPDATE August 5th 2024.
After a mad dash from Luton airport to London Heathrow Esther and her mother made it with literally moments to spare to Tel Aviv. It was imperative that they made as Esther’s cells were ready and quite literally defrosting ready for the next stage.
Apparently there are no signs of conflict in the area BUT a whole host of countries such as Canada, Spain, Greece, India, UAE, Italy, Netherlands, Germany, Hungary and so many others have cancelled flights into Israel. The wording from the UK Government (Foreign Office) is:-
“The FCDO advises against ALL travel to parts of Israel” – (current at August 5th 2024).
UPDATE August 6th 2024.
Well Esther is back at Global Patient Services, Sheba Medical Centre Tel Hashomer. The security is incredibly tight and there are more tests to be done before she begins her immunotherapy treatment (single Nivolumab). She really is an incredible young lady – her courage and determination knows no bounds. She deserves every bit of luck and success.
UPDATE August 13th 2024.
After arriving in Israel the hospital requested that the CT Scan be repeated as the doctors were not happy with the ones provided by the UK Hospitals. The Pic line took 3 minutes to be fitted by their trained surgeon!!
Esther has now started Lymphodepletion for several days and she has loaded loads of films for her and her Mum, Jane to watch during the hours so that they can deliberately avoid watching the news channel describing the unfolding events in the area. A choir cam to provide some entertainment for them the other evening suitably wearing face masks respecting Esther’s condition and need for a “sterile environment.
How lovely and thoughtful.
On the funding side Esther’s appeal has received 2 incredibly generous donations – each of £10,000. This is incredible news especially at a time when it’s required. All donations are massively appreciated no matter how large or small. The appeal fund now stands at just over £80,000 – absolutely fantastic news. Please keep thinking of ways to help this lovely young lady.
UPDATE August 21st, 2024.
Esther had her TILs on August 16th – 108 billion cells which is the 2nd highest known at Sheba Medical Hospital. 90% are CD8+ T cells. These cells, also known as cytotoxic T cells or killer T cells, are a type of T lymphocyte that play a key role in the immune system’s defense against infections and cancer specific against melanoma (immune defenders with a strong memory) so will continue fighting the cancer (we hope forever). IL2 is harsh and she has 6 to tolerate. She is sleeping after her 2nd dose just now.
More recently Esther is longer on the Bone Marrow/Tils unit but has been moved to the oncology ward. Esther’s neutrophils( the ‘first responders’ of her immune system) are 200 per cubic mm – normal is >1500 and she’s very weak. So she is confined to a closed room with her mother and a limited diet. Her left arm has swollen due to oedema of the TILs/ IL2 and recent radiotherapy.
There is no sign of coming home soon. She was released briefly to X-ray for an ultrasound.
UPDATE August 27th, 2024.
After a challenging few days Esther’s blood count finally rose and her arm is less swollen due to a compression bandage and the manual lymphatic drainage massage that Jane, her mother has been doing . So the Dr has been in and they have managed to get permission to fly home . She is still very weak and they have disabled assistance at the airport.
They have met some really lovely people, both staff and volunteers the main problem being language difficulties and are having to rely on Google Translate. The oncologist – Dr Shapira the head of the oncology/TILs department is so compassionate and competent – but they are looking forward to seeing Sarah Danson again at Weston Park. In their words “Nice to be coming home. And I got my knitting finished.”
Esther is desperate for the fundraising efforts to continue – every pound is a step in the right direction.
Not only for her but for Heidi, her husband and all the rest of her family. Please keep donating.
UPDATE September 29th, 2024.
