Here’s a quick update – Kevin’s head has been hurting lately. We think this is because the 4th brain lesion (previously thought to be a blood vessel) is actually growing. This was later confirmed on a brain MRI during Kevin’s last appointment. We don’t know the size, but we think it’s small. If I remember, this particular one is in the center of his brain.
At the last report, the other 3 lesions are not gone, but are considerably smaller, thanks to the radiation. The meds Kevin is taking do not seem to be crossing the blood brain barrier – one of the reasons I really want him to go to Colorado or Washington to try cannabis oil, thanks to the promising anecdotal information I’ve read about gliomas and cannabis oil. He has promised me he will go in April, but this will depend on radiation and his recovery.
Kevin meets with his oncologist and radiology surgeon to discuss additional gamma knife (radiation) treatments. My guess is they will have him do several MRIs again to pinpoint each lesion this week, with plans to radiate the following week – but just a guess on my part.
Radiation will make him extremely tired for several days. Fortunately this is not whole brain radiation, and we are very grateful there were no reports of new lesions – only the one they wanted to watch and wait.
Talfinar and Mekinist combination
The medical combination Kevin is currently on works due to his BRAF V600 K gene mutation. These meds block various molecular pathways, which in essence stalls the melanoma from growing and causes it to temporarily recede. The average time this medicine remains effective is about 7 months, although some patients can remain on it for years (not the norm tho).
In reading page after page in Pubmed and clinical trials, I discovered anti malaria meds are showing to be effective in extending the efficacy of the drugs Kevin is on. I forwarded this info to his oncology team, but I’m not sure if they will administer it. Medicine is a very frustrating field. I’m learning medicine is more about following rules about lifesaving than being a lifesaver or innovating anything. That’s for biochemists. Until now i never thought of medicine being like law, and we all know how fun the legal system is.
Aside from the race against time we are constantly on guard for any side effects from the meds. Three weeks ago the side effects were frightening – an uncontrollable high fever, exaggerated chills (rigors) – so extreme Kevin couldn’t dial his phone. This started with mild cold symptoms – a runny nose and occasional cough. It resulted in dehydration in spite of lots of fluids – this resulted in a hospital visit where Kevin comfortably received 2 liters of IV fluids in a less than 2 hours. He had to take a break from the meds, and they reduced his dosage of Tafilnar by 25 mg.
Kevin was getting chilled yesterday, but only slightly, and no fever. I noticed he has a very mild runny nose and has been coughing, so we’re hoping that he’s not showing more side effects. Please keep him in your prayers.
Our diet continues to improve with nice supplements, spices and fresh veggies and fruits. After watching some documentaries and reading lots of cancer survival books, we’re eating more vegan meals. Kevin is a very healthy eater, but he loves his steaks! So do I!
I told Kevin I prefer he doesn’t cut meat entirely, and that we gradually work our way to less. Right now he’s doing a fine job of keeping weight on, so I want to be careful about changing gradually if possible.
The Wait for Better meds
We still await the expanded use for anti-PD-1 meds. I was sent a Change.org petition to sign for compassionate use for a woman with late stage cancer, who also wants anti-PD-1 meds. Merck has been pretty notorious about denying compassionate use for cancer patients, even to the point of getting very negative press about a Colorado man with late stage melanoma who made a similar plea, but later died. Dr. Sosman, the oncologist at Vanderbilt, said this is because they are not through the clinical trials enough yet to consider compassionate use, as it wastes potential clinical trial data, and can taint findings. He said that it’s likely expanded use will begin soon, which will make these meds a bit more easy to obtain from the sites which held the clinical trials previously. So, it’s a waiting game – and this is why our strategy to try different hospitals will hopefully work.
The strategy continues to be:
- Make this current combination and radiation work until the anti-pd-1 meds are available
- Extend this current treatment with anti malaria meds, if possible
- Get the anti-PD-1 meds
- Travel to try cannabis oil if possible
- Plan for the worst, hope for the best
- Extract happiness, gratitude and fun from each day, as much as possible