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August 4, 2012 at 3:30 am #20524zephyr66Participant
after getting a clean scan about 6 or 7 weeks ago, my partner amy found out today her cancer is back in the same spots… two areas in her spine with some tiny nodules along her spine as well. i don’t understand how PET scan 6 weeks showed her NED but today MRI showed the opposite. regardless, we are not sure what to do. we meet with her oncologist monday to explore options. here is what she has had:
zelboraf – about 6 months and took it concurrently with IPI
IPI – thought it worked (clear PET scan 6 weeks ago) but guess it didn’t.
radiation – only completed 4 rounds due to side effects (terrible nauseau, throwing up, fatigue and weight loss)
we suspect doc will say to go back on zelboraf since it was still effective when she went off it to see if IPI was successful. but since for most zelboraf has a shelf life, any suggestions about treatments that might be helpful? right now the only place we see the melanoma is in her spine. trials? experiences? any input is good that we can bring to our doc.
sylviaAugust 4, 2012 at 11:29 am #55743Catherine PooleKeymaster
I’m so sorry to hear this news. I hope you two had a good break though on your vacation. I would ask your doctor about the braf/mek combo (Dabrafenib works by blocking BRAF, Trametinib is the MEK agent) that was just submitted for approval to the FDA. There may be some trials still open but approval may happen in the next few months. I would also look for some PD1 trials. UCSF, UCLA and Angeles Clinic may have openings. I will do some searching too. It is best for you to call though and see what they have available as website listings may not be up-to-date. Let us know how things are going.August 4, 2012 at 5:27 pm #55744zephyr66Participant
catherine… thanks for the reply. ironically, we have just booked our first vacation for september as we thought we were out of the woods for a while, so getting her in good shape is definitely in order! we did have a weekend jaunt to vegas a few weeks ago.
i seem to remember the doc saying he didn’t like the braf/mek combo… something about pretty intense side effects? maybe i’m mistaken. can you give me a brief rundown of why you think that combo may be better and what the typical side effects are? i’ll try and research it on my end also. thank you!
sylviaAugust 4, 2012 at 5:52 pm #55745Catherine PooleKeymaster
I don’t believe the side affects are any more intense than Zelboraf alone is. There are fevers and rashes. But so far it seems to provide a more durable response than Zelboraf alone. Although this could be due to their BRAF agent that is different. I guess we will know more once it goes through the FDA. Here is a comment by Dr. Weber at Moffitt for reported side affects:
While the use of BRAF inhibitors has been associated with serious adverse events, especially skin lesions, these side effects appeared less often in patients who received the combination therapy. Skin toxicity of at least grade 2 severity occurred in 17 (14%) of the 125 patients. Three patients (2%) developed cutaneous squamous cell carcinoma and two patients (2%) developed actinic keratoses.
While skin toxicities were generally lower with the dabrafenib/trametinib combination compared with what has been observed in patients who received single-agent BRAF inhibitors, Weber noticed that some toxicities experienced by patients in this study were higher than what is typically observed. Pyrexia, or fever, of grade 3 or higher was reported in 52% of patients, with 23% of patients reducing dosage as a result. Additionally, 38% of patients experienced chills of grade 3 or higher. Weber noted that most of the patients experiencing chills were also patients who reported experiencing pyrexia.
Weber said that the use of vemurafenib typically results in skin lesions in up to 25% of patients who receive it. Weber also noted that the PFS was about three months longer in patients who received this combination therapy than those who received single-agent vemurafenib to treat advanced melanoma.
“If the data from this study hold, they would look clearly superior to the figures that we’ve seen with vemurafenib,” Weber said.
More data on the use of dabrafenib as a single agent and vemurafenib in advanced melanoma patients are expected to be presented at ASCO’s meeting in June.August 7, 2012 at 11:04 am #55746DadZGirlParticipant
Thinking about you and Amy. My Dad has his scan review today. This is 4 month scan after ipi. Dad says he is not doing well, says his tumor on his pelvis is coming back in the same spot. Sounds similar to Amy’s situation. Rats! I hate melanoma. I’m glad you and Amy took a trip and had some fun.
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