This is just a quick update on how Lori is doing. She has had a few migraines which are controlled by allergy meds (she has had them before, but it appears this chemo is causing them). It is a pain in the ass side effect, but definitely a manageable one – and better than a lot of the other potential options.
She said she is having a little better time breathing, and has a little more energy – which is promising. She is also super busy.
I’m crossing fingers and sending virtual hugs her way …
On Thursday things finally started to come together. After three days of constant phone calls between Lori, Stanford, and Genetech a plan was made.
Lori was to receive the same drug as the trial, but she is not in the trial. The drug is FDA approved for bladder and lung cancer, so it is considered off label for breast cancer. Her doctor at Stanford could prescribe it, but since it is off label there is a risk that her insurance will not cover it. Fortunately, she connected with Genentech for financial aid. The person there guaranteed her that she would not be charged for the drugs – a $15,000 infusion, money that Lori does not have. She did not want to bankrupt her family to get treatment, but this treatment is the next best option to control her cancer. Thank you Genentech for ensuring that Lori could get the treatment without undue financial burdens.
On Thursday she received a call that she had a 1pm appointment for infusion. Since this was not part of the trial, she was able to go to South Bay. I was with her. We left her place at 12:30, and even after arriving and sitting in the chemo chair it was unclear that she was getting the trial drug Tecentriq.
After arriving the infusion nurse confirmed that the order was for Tecentriq and that they did have it in stock at the pharmacy. This was double-checked several times. The nurse commented that they give it regularly, as it is standard chemo for other cancers.
After some back and forth about bloodwork, the infusion was set. After three hours we were done and on our way home.
I checked in with Lori yesterday (Friday) and she said she was tired and feeling a little nausea – but also that she needed to eat. So that is good news. She is exhausted from all the hassle of the last couple weeks. The stress of not knowing about the chemo and knowing the cancer is growing. She will need a few days to recover just from that, let alone the chemo.
Now we wait. She should have a sense of whether or not it is working in the next couple of weeks. Her lung mets are really slowing her down – making it extra challenging for her to do everyday things. The chemo isn’t instantaneous and even if it is working she will likely feel worse before she feels better. But she is hoping and praying that this knocks back the lung mets so she can get back to hiking soon.
Please be patient and don’t expect a personal reply to everyones well wishes. Know that she is getting them, and reading them, and appreciating your support – it is just that personal replies add to the burden of things that need to be done. One way to help is to let her know you support / love her but also explicitly saying that it is ok that she doesn’t reply.
Hugs to everyone, Becky
Lori needs your help. Please tweet to @genentech to release the MyPathways trial meds for Lori. She did the washout, and let her cancer progress, so that she could be part of this trial. She was enrolled, and how they are holding back the meds. Please tweet to help #savelori
Lori was interviewed by the local NPR station – I particularly like this quote from the piece:
“I didn’t say yes to cancer,” Wallace says. “I have tried everything I can. I have done clinical trials. I have said yes to every possible treatment. And the cancer doesn’t care.”
You can read it here: https://ww2.kqed.org/news/2017/07/21/the-painful-side-of-positive-health-care-marketing/