jrtufo

Hi AZ-I’m in a similar boat-recurrence after five years with hard/tender lump near original site (parotid gland). Just a heads up-two needle and one core biopsy showed this as a benign adenoma yet my oncologist at U of Colorado said…”hmmm, I don’t buy this with some activity showing in the PET scan…” bless her skeptical heart because after sending the tissue to molecular pathology the markers showed that yes it is a recurrence. So I’d recommend that even if your tissue sample comes back looking benign have your doctors get it to a molecular pathology lab for testing. I’ve been on Taf/Mek for five years (reduced dosage) with very manageable side effects (mostly fatigue) and I’ll be sad to need to switch to a new treatment but such is life with unresectable melanoma…little booger new tumor happily living in a nest of facial nerves…Best of luck and keep us posted!
JT

I had the fever/chills issues pretty bad so my doc lowered my dose to .5 MEK and 100 Taf 2X per day and that really helped. I’ve been on the therapy for 2+ years now and after reading your experience I consider myself very lucky! Best of luck, and let us know how you progress.

NED is one of the most beautiful phrases…Warrior indeed!

That combo can be crazy difficult, but my experience is that it does get more manageable and predictable. It does sound like you should talk to the doc about going on a lower dose.

Rock On Tex!

Wow. You have had a time of it. In addition to what you are and have been doing I hope you also have a palliative care member on your team. Having someone advocate for your pain management needs while you are in (or out) or therapy may be of great help to how you navigate this next chapter. It doesn’t mean you are weak, but it could mean that you’ll be more comfortable while being strong.

I've been on this combo for 18 months.  I sufferred from severe chills/fevers but with a reduction of the daily dose (1.5 mg of the Mek + 100 mg 2X per day of the Taf) I've been coasting for about six months.  I'd recommend pushing the doc for a reduction so as to keep away from the steroids as much as possible.  And you are right;  it sucks going through this alone…

Best of luck with the Pembro combo. Every day science is learning another amazing thing – keep the faith. JT

I’ve been on this combo for about 2.5 years. I had trouble with fatigue and fevers initially and have been on a reduced dosage for about 1.5 years without much trouble. I consider it a great combo for me as my tumor was not able to be fully removed yet my scans now show only dead tissue. Try the normal dose, prepare yourself for fever/chill combo and understand that your body very well may adjust (as mine has) over time. Good luck and keep the ibprophen close by.

I second Jackie! Nothing better than a NEDversary!

I’ve been on the Taf/mek combo for over two years. Initially I had a very hard go of it and when I stopped for far longer than the doctor recommended 4 days (2 weeks!) my next scan showed a small new growth in my lungs. Happy to report that my body has adapted (on a slightly lower dose than originally prescribed) and no more spots on my lungs and my residual tumor has turned to dead tissue. Hoping that for you the fever/chills/rash episodes will become fewer and farther between.

I had 5 Keytruda infusions then stopped due to progression.  Switched to Taf/Mek in Sept 17, added the Keytruda for two infusions in Dec of 17 and got really sick.  Stopped everything for a month to recover some energy and went back on Tak/Mek.  On and off with the combo as fatigue/fever problems came and went.  Recently had a very bad case of pneumonia.  My doc thinks that the Keytruda is out of my system-but I always wonder.  Sticking with the Taf/Mek as long as my scans continue to show dead tumor tissue and I can handle the fevers.  I hope that your mom is getting the answers she needs to decide on treatment.  Hopefully she is at a teaching hospital and is get oncology AND palliative care.