M is for Mekinist

[missyrand]

My sweetheart has washed out of the tumor injection clinical trial. His liver enzymes are too high, an indicator that liver tumors continue to increase in size or number

Because he is Wild type (V599 BRAF instead of the V600 genetic type) 2 docs have recommended trying Mekinist inhibitor only without the usual concomitant BRAF drug. Currently waiting on pharmacy delivery of Mektovi.

Thank you to Nadia, Kelly and others who messaged me with insights, including loved ones who benefitted from sub-standard doses which also thwarted side effects.

General update: Wayne has not been able to work for 4 weeks. He has slowed down considerably due to fatigue, nausea and fevers. I’ve returned to taking a beta blocker medication daily for my own anxiety, taking it a day at a time with work. Our sleep is very disrupted. I’ll be trying melatonin again tonight. But we are hanging in and spending time with family. 2 daughters started new jobs in the past week, so we celebrate that with them 😇

We also marked the 3rd anniversary of our Living With Melanoma Support group, Alexandria last Thursday, which remains a huge center of support, like this HealthUnlocked melanoma caregivers space.

Peace

Missy

[strawberryjam]

I am hoping hoping hoping that Mektovi works for Wayne.

[strawberryjam]

I sure do wish I had support group available in the SF bay area. Do you know of anything? It seems that besides emotional support, you all benefit from the discussions of treatment decisions of group

members.

[missyrand Ambassador in reply to strawberryjam]

Very true. I’ll ask my. Contacts at MRF and MRA if they know any support groups in SF and get back to you

Missy

[SGHSweethearts]

Missy,

I’ve never heard of Mektovi, is it related to the mekinist family? I pray this provides good results for Wayne.

I would love to know if there is a melanoma support group in the Irvine, Orange County. CA area if you could check your contacts I would appreciate that as well. My husband won’t go, but I could certainly use it.

Michele

[missyrand Ambassador]

Michele

Yes, Mektovi Braftovi is one of the newest iterations of the Mel- BRAF targeted therapy approaches

I will ask about Irvine CA support group resources from MRF and MRA and get back to you

Peace

Missy

[HSsweetheart]

Hope this works for Wayne.

My husband has done well in the Mekinist/Tafinlar regime this past year.