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August 23, 2014 at 1:31 am #22146
I am sharing my experience of reduced dosage and then every other day reduced dosage in the hope that it helps others.
A brief history. Melanoma found around 20 years ago through mole on back. Excised. No treatment. 2011 another mole was melanoma. Lung nodules. VAT lung surgery. IL2. Numerous small lung nodules grew extremely slowly and all under 1 mm through 2013. September 2013 2 small brain mets (.2 & .3). Gamma November 2013 worked on those two. January 2014 two more small mets. Gamma February 2014 due to growth of those.
Started TAFINLAR + MEKINIST February 2014 to combat brain and lungs (which since November had grown where now 2 were >1 mm.
For the first 50 days I needed 4 breaks due to shakes and loss of appetite. At that point daily Tafinlar dose was lowered from 300 to 200. By day 75 still having side effects so changed to every other day. Now almost 6 months in still getting results on a reduced, every other day dose.
April brain scan shows significant resolution or non visible mets.
May chest scan shows mets reduced 70%. Dose reduced and then changed to every other day.
July brain shows continued resolution.
August chest shows further 15% reduction.
My message is that not every person must follow the norm. I had a difficult time accepting from my doctor that this was a reasonable dose. I was scared that the low amount of medicine would not work. Turns out she was right.October 9, 2014 at 8:03 pm #65235greenshaekParticipant
Thanks so much for sharing that. My oncologist was also telling me that in order to prolong the effects of the braf/mek drugs an on/off schedule may be of advantage (to stop the melanoma becoming resistant and to prolong the amount of time the drug is effective). For example 2 weeks meds, 2 weeks without etc.October 9, 2014 at 9:08 pm #65236MathewRParticipant You’re referring to “intermittant” dosing. I’m under the impression from my onc that folks on the Taf-Mek combo aren’t really doing this–other than to help manage side effects. In other words, folks aren’t doing it to prolong the response.October 10, 2014 at 2:38 am #65237 Folks in the trial might be following the protocol for that trial.
My point in posting is that there are different paths to effectiveness. As many say on this board, we are all individuals. For me, at least for now, the every other day dosing of a lower than “normal” amount is doing it for me, and may for others.October 10, 2014 at 10:32 pm #65238Celeste MorrisParticipant
That is so great, Steven! You are living proof of what some of the latest dosage management research is showing….alternate dosing can lead to fewer side effects and longer lasting effectiveness! Wonderful news. So glad it is working well for you! CelesteOctober 12, 2014 at 7:22 pm #65239 Thank you my friend. I am definitely proof of the side effects. I am on the combo for almost 8 months so still not past the average for effectiveness I do not think. Hopefully soon!November 26, 2014 at 10:03 pm #65240 Hello all. Happy Thanksgiving.
This is an update to my original post from 3 months ago (see below or above). I have since had:
October brain MRI – clean
November chest – stable. 5×5 mm, 8×3 mm, 4×2 mm.
I am still on a reduced, every other day dosage. No side effects.
My oncologist says if I remain stable for another 3-6 months she may recommend stopping as she has others who have stopped after prolonged stability with continued stability, and that she believes if needed the drugs can be restarted.
Best wishes to all.
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