bdginmo

The whole brain radiation treatment had little if any effect on the tumors in the brain and it was decided to stop the dabrafenib and trametinib treatment and plans for nivolumab were cancelled as well. Then on Aug. 7th she was taken to the ER in an ambulance due to persistent pain and partial paralysis on the left side of her body. The hospital consulted with the Mayo Clinic and it was determined that all treatments except for the most essential for seizure and pain management would cease. She was sent home on hospice on Aug 12th. There has been a rapid decline in her condition ever since.

There have been some significant developments in the last month.

1. A seizure occurred. This was preceded by confusion at which point she was taken to the ER. The seizure occurred immediately upon arrival at the hospital. As a result a police office and hospital staff were able to get her inside where medical care could be administered without delay.

2. Stomach and digestive issues developed a week later. She was taken to the ER on two different occasions with the 2nd leading to admittance to the hospital. It was determined that pancreatitis developed most likely as a side effect of the dabrafenib and trametinib treatment. This particular side effect is rare, but is severe and possibly life threatening. She was taken off the D&T drugs at the local hospital via consultation with the Mayo Clinic.

3. Her husband drove her to the Mayo Clinic 2 days later where it was decided to terminate the D&T therapy and immediately begin whole brain radiation followed by the possibility of nivolumab treatment.

4. Whole brain radiation treatments were completed on Monday (7/28/2019). Half way through the treatment an MRI showed progression of the disease as compared to earlier in July. It was determined that immunotherapy would not occur as had been originally planned.

I just wanted to post an update. She has been on dabrafenib and trametinib for 2.5 months now. The last MRI was about 2 weeks. It should significant reduction in the size of existing lesions which is obviously great news. However, there were several new but smaller lesions that appeared. Overall the response to the treatment has been favorable. Side effects have been minor and include very slight thinning of hair and fatigue both of which she reports as being easily manageable.

Unfortunately one new symptom that just appeared this morning was confusion followed by a seizure about an hour later. Fortunately this seizure occurred after she had been admitted to the ER. The CT scan showed that these smaller newer lesions are the likely culprit. She was given anti-seizure medication and discharged within a few hours.

I’ll try to update this post on an as-needed basis…maybe every couple of months or if something significant occurs.

Update…

It has been one month since my sister-in-law received a surprise diagnosis of stage IV melanoma. She is BRAF+ and will be doing targeted therapy. She just received the medication this week. She is on dabrafenib (BRAF inhibitor) and trametinib (MEK inhibitor). Considering that she just started taking it yesterday there's no update on how well it is working.

One new symptom that just appeared today is that she has lost motor control in her left foot. She can feel it, but can't get it to move. The doctor has ordered an MRI and recommeded that she go to the emergency room. This may happen tomorrow.

Thanks for the responses. Quick update…she did get a response back from the doctor and he confirmed that it is BRAF+. He had already said that dabrafenib+trametinib would be the likely treatment if this were the result. It is our understanding that BRAF+ is best case scenario since it opens the door to a whole new class of treatment protocols and that these BRAF inhibitors are actually pretty effective.

Exactly. She essentially defined the odds. It's my understanding that stage 1A exhibits very low progression and recurrence rates. We understand that this was likely an unfortunate luck of the draw scenario.

And remember, there is a bit of selection bias here with my post. If all had gone well and no other lesions had appeared then you would have never known that someone with stage 1A was cured. It was only because of the sudden stage 4 diagnosis that you were even aware of it. I hope this sets your mind at ease a bit.

And yes, I agree. This is a lesson for others to be hyper vigilate. If there is a spot on your skin get it checked out sooner rather than later. If it's treated at stage 1 then you have very good odds of a positive prognisis.

And thanks for the kind words of support!