Alice from UK - diagnosed August 2017 aged 4

[Disco76lover]

Hi there, I am so sorry that you are having to go through this and even more sad for Alice. We are fairly new to this too as our daughter, Ellie, was diagnosed last year. Like you, we live in England and our hospital is in Newcastle. Ellie had her primary removed in her leg but she too has lung mets. They have said they wouldn’t operate or give Ellie laser therapy as at present they are too small but they don’t think they would ever offer it. We have looked at treatment in Germany for laser but for now she is on Cediranib which is keeping things stable (fingers crossed). Did the Marsden offer any information regarding the size the lung mets have to be before operating? Thinking of you all but it seems the team are on it and things sound positive for little Alice.

[stuartt]

Hi Disco76lover,
Nice to make contact with a fellow brit going through this and glad that Ellie is stable at the moment on the Cedirinib.

I think our team are very much concentrating on sorting out the primary tumour first so it wasn't a really detailed conversation about the lung mets.

There was no mention about the size of them being a determining factor for surgery.

I have just ordered all the scans on CD (cost me £10) and when I get these in the post I will probably make contact with that laser clinic in Germany and see what their opinion is on surgery.

I believe this same kind of laser surgery is also offered on the NHS at the Brompton in London.

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Hi Debbie,
Thanks for your post - I will read that link on the Jacksonville clinic with interest. I have already been reading Dr Wilky's blog and the trial you mention - that one is I think open to over 16s only, but at least we should have access to a Pemb only trial in the UK.

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Hi Arojussi,
That is our understanding too - we are a bit wary of the late effects of radiation on Alice, being so young and still growing, so we are very much in favour of Proton vs standard radiotherapy. We hope the NHS agree - it'll be pretty expensive if we were to fund it ourselves!

[Bonni Hess]

Dear Stuart, Thank you for your very detailed update. It sounds like you had a very productive meeting with the doctors and were able to obtain good answers to your well prepared questions. I am very grateful that your oncology team is taking a very proactive approach and exploring all treatment options. In 2008 our daughter Brittany underwent three weeks of Photon radiation to her residual unresectable spinal tumor tissue because it was felt that the stronger Proton radiation was too dangerous due to the close proximity of her residual tumor to her spine. Unfortunately the Photon radiation was not only unsuccessful in shrinking/destroying the remaining spinal tumor, it also seemed to cause an aggressive spread of the tumor up and down Brittany's spine necessitating immediate discontinuation of the radiation and an emergency major spinal surgery. I am holding VERY tight to Hope that dear Alice's post debunking surgery radiation treatment with the proposed/planned stronger Proton radiation will be MUCH more successful than Brittany's radiation experience, but am concerned about the possible risk of increased hemorrhage with radiation and Sutent use as indicated in the article that Debbie previously shared, and encourage you to discuss this concern/risk with the doctors prior to dear Alice undergoing the planned radiation treatment. It is very encouraging that the doctors feel that the Sutent is currently working, and that if it is ultimately determined that it isn't or if it becomes no longer effective, that PD-1 treatment with the very promising new Keytruda drug would be a potential systemic treatment option. I continue to encourage you to make sure that all of the necessary monitoring scans have been done/ or will be done including a brain MRI and abdominal/pelvic MRI's or CT's. In the meantime, now that you have a proactive treatment plan in place, I Hope that you and your family can try to enjoy a beautiful Holiday season filled with Hope that the New Year will bring surgical success, healing, and disease stability for your precious little girl. Heart to heart with deepest caring, MOST positive thoughts, healing thoughts and wishes, warm friendship, and continued Hope, Bonni