Vicky Phelan says she is thinking about cancelling a new clinical trial to treat her cancer in the US, which is due to begin soon.
Phelan is undergoing a year-long treatment in Maryland and had taken a month-long break this summer to return to Ireland and spend some time with her family.
Since her return to the US last week, she says she has been researching other options for treatment as she wishes to spend more time with her children and is unsure if the new treatment she is to receive is worth the time apart from her loved ones.
Sharing photos from a hotel, she writes: “I am taking a few days away from everything because I have some big decisions to make next week.
“Following my post last week, I have still not had my scans and other tests done in order to get me started on the new clinical trial. I am booked in for all of that next Tuesday. In the meantime, I have been doing a lot of thinking and also reading up on this new trial and researching other options (there are very few!).
“This new clinical trial is a Phase 1 trial. That means that the combination of drugs has not been tested yet on patients. I would be among the first patients to give this a go. Two of the three drugs are the same as what I was already taking on the previous trial. There is one new drug. I am not convinced that the addition of this one drug is going to make the difference for me.
She had been receiving drug M784 but experienced harsh side effects, including developing Bell's palsy which paralysed the left side of her face. The campaigner says her doctor has suggested she undergoes the new treatment for a month and then after a scan decide if she should continue.
“I have voiced my concerns with my doctor and he understands where I'm coming from. He has proposed that I just do four infusions of this new drug combination and have a scan and see if it works. If there is no change, then I go home. If it works and tumours shrink, then we continue with treatment.”
She believes the only alternative for her is to return to Ireland for chemotherapy, which she describes as a short-term option.
“What's the alternative? Go home and go on chemotherapy and get some shrinkage of my tumours in the short term (they will grow back though!) and spend that quality time with my children and maybe something new will come along or maybe my doctor will have some really good preliminary results from this new trial and I come back and start on the trial then?”
Phelan says she has taken a break to unwind before she makes a decision.
“There are so many questions and scenarios playing out in my head at the moment that I needed to get away for a few days and just rest, relax and unwind. So far, so good. I feel completely rested and am delighted to be able to have long, hot soaks in the bath with some of my bath bombs, go for a swim in the pool and get out for a walk around the monuments on the National Mall.”
She says she will share an update at the end of next week after she receives her scan results and she thanked her followers for their support.