sgreenberg

At my wife's med center, they WON'T treat with Keytruda without updated blood work. She sees the doc the day of treatment – every three weeks. Makes sense, no?

Great to hear. Good luck, and keep up the pressure!

Hi,

Sorry to hear about your wife's brain mets and their effects. My wife has 9 brain mets thus far (started with 2 nearly two years ago)…and is not in a good way at the moment.

Most importantly, is she being treated by a Melanoma specialist? If not, I'd STRONGLY recommend finding one ASAP. A regular oncologist isn't good enough. There are a lot of new options for treating brain mets – and only a Melanoma specialist will be up to speed on all of them. 

Gamma Knife is a form of Stereotactic Radiosurgery (good overview here: http://mayocl.in/2yXe8U5), which my wife has had 4-5 times. The procedure is considered quite effective at slowing growth of individual tumors, and the side effects are generally mild. SRS together with immunotherapy (Keytruda or Ipi/Nivo) or Dabrafinib/Trametinib is pretty much the best game in town for the brain.

I see you're in the UK, so at least you (like us in Israel) have a public heathcare system to rely on. Good luck. Happy to compare note further if it helps.

Steven

It's very tough when a therapy fails. My wife's brain mets (originally 2, now 9+) stopped responding to Taf/Mek around 9 months ago, and she switched to Keytruda, with a lower dosage of Taf/Mek intermittently. Hoping Ipi/Nivo does the trick for you!

Hi Dr. Sertan, my wife has had brain mets for almost two years now – treated with SRS, BRAF, Keytruda, and soon Opdivo/Yervoy. There is hope. Note that we are neighbors (I'm in Israel), and we have outstanding Melanoma treatment centers here, which you may consider. Best of health!

Hi, My wife (Stge IV, brain mets) has been on Taf/Mek on and off for over a year now. The side effects were by far worst in the first couple weeks/months. After that, she'd have occasional fevers and coughs which were controlled by taking a few days off the meds. Now, although she's only on a 3/4 dose in combo with Keytruda, there are really no side effects – some passing joint pain. So hang in there – it may quite possibly get better (and, most importantly, IT WORKS!).

Welcome, and I hope this new combo works for you. My wife (and probably half the people in this forum) have experince with Dabrafenib and Trametinib. What's the question?

 

Steven

Good to know, thanks! Hope he's feeling better now.

My wife had fevers when she was on full dosage of Taf/Mek, accompanied by mild headaches and a dry cough. Tylenol or equivalent usually took care of the immediate problem, although the onco also stopped treatment for 2+ days occasionally, which would also help break the fever cycle.

Best of luck!

Sorry to hear – insomnia sucks. My wife has been on Dexamethasone (steroids, like Prednisone) for many months now. She uses Cannabis with a high CBD% to help her get to sleep, with much success, and supplements with Benadryl-like sleeping pills. Worth a shot!

Congrats!

We've transported Mekinist by car unrefrigerated for short distances. Sounds to me like a couple hours won't make a difference.

Congrats on the anniversary! My wife is 18 months following Stage IV diagnosis, has 9 brain mets and is prone to seizures from post-SRS edema and occasional tumor bleeding. Know that there are LOTS of anti-epileptic options out there – all quite effective. She's been on Depalept, Kepra, and Tripleptin…and finally settled on Vimpat. No need to compromise on side effects, but the transitions between meds can be tricky. Good luck!

My wife had the same thing when she was on Taf/Mek – high fever preceded by a nagging dry cough. A two day break from the meds would break the cycle – her fevers would stop within a day or so. After that, she'd go back on the meds with no prob…until the next time. 🙁

Good luck!

HBDTY!