Oh how I wished it was a walking journey! That I could deal with! But in the last 6 months my oncologist’s quest to get me to have this PIKC3A targeted drug, was admirable, and left us on a roller coaster of emotions.
In December 2022 when there was evidence that Paclitaxel chemo was not doing the trick, my oncologist and the local MDT decided that Alpelisib was the next logical step. Only snag was I’d developed brain mets and needed radiotherapy before anything else.
His request was denied by the health board and then subsequently denied by the cancer board for independent funding. He then approached the drug company to ask for it on compassionate grounds.
In the meantime I was looking to procure Alpelisib privately from drug companies outside the UK. The cost proved cheaper than if I bought on the NHS Top Up scheme. The problem being that privately accessed drugs could not be dispensed on the NHS and everything related to my treatment would have to be done as a private patient. This included scans, blood tests, all other medications.
Why couldn’t I get the medication on the NHS? Because of the indications for use as stipulated by NICE. I had already had too many lines of treatment.
All this was happening while undergoing brain radiotherapy and with each passing day, it was another day without systemic treatment. Each step in the above process takes time and added more delay. And yes, the drug company then came to my oncologist and refused to grant me the medication for the same reason: too many lines of treatment. Can you imagine the mental anguish?
My last hope was the NHS Top Up scheme. This was granted because another oncologist agreed to my oncologist’s recommendation.
Now the delay was that I needed to be weaned off the steroids that I was on from the radiotherapy. More waiting.
So my husband and I decided to start a Go Fund Me page, to raise money for the Alpelisib. I had been unable to work for the last year and we had used up our savings.
I never wanted to ask for help or put my plight out there to the world, but what a response we had. Friends, strangers and family contributed, raising the money we estimated we would need in three days!
We are forever grateful.
The steroids eventually stopped, we made the payment and I’ve started the Alpelisib.
It still is not easy.
Going through treatment for metastatic breast cancer is hard enough, together with all the emotional turmoil. Add into this mix the ‘fight’ to get treatment, makes it an emotional nightmare. I was exhausted….still am.
It is a scenario many of us many face.
The longer we live with this disease and new treatments are developed, the less we may be able to access them because of treatment line restrictions.
METUPUK is constantly striving to bring increased information to the public and campaign for access to more treatments.
I will continue to advocate for them. Please support the charity.
By MetUpUK Member, Aisha Umrawsingh