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Update on the saga of me and my adrenal glands


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Found out that the little blips on my adrenal glands are adenocarcinoma (same little stinker that was in my right lung).  My lungs are FINE, though, so that's something to be happy about.  No genetic stuff found in blood tests with the exception that there was an RET on the RNA (whatever that means).  My doc is going to look further into that.  However, in the meantime I've started back on treatment.  A larger dose of carboplatin, Alimta and Mvasi.  I had my first treatment this last Friday and only have 3 more treatments to go (these will be done every 3 weeks).  If things are looking OK at the end of the 4 weeks, the carboplatin will go out the door and I'll remain on maintenance for the time being.  Since I have "graduated" to stage IV with this (originally diagosed stage IIIA a year ago), I don't know what the maintenance usually consists of.  But I do know that the goal is to contain and manage this.  Hopefully render things nonreactive (what does that mean?).  Regardless, I've been assured that this met is extremely common so it's not like my onc slapped himself upside the head and said "Dang I didn't see that coming!!!"  LOL!  It's his hope that this is the only met, as it is mine of course.  Anyway, not gonna give up, gonna fight the fight and keep up the attitude!  :)

I'd sure like to hear from someone who has had an adrenal gland met, if you're out there.  Heck, I'd like to hear from anyone on this forum!  You're all awesome!  

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I'm sorry to hear about the adrenal glands.  If you have a RET mutation there are Targeted Therapies that might work for you.  Here is more information: https://lungevity.org/for-patients-caregivers/lung-cancer-101/treatment-options/targeted-therapy

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Thanks, Kristin!  Mvasi is something of a targeted therapy in that it starves tumors by cutting off their blood supply.  BUT a person has to keep an eye on blood pressure (but give me that instead of a tumor any day - LOL!).  I don't know that the RET was much to even make a difference.  My onc is going to bring this up at what he calls their "tumor board" at their next meeting.  He said it's a long shot but it could give him another weapon (med) to treat me with.  I don't think Mvasi is meant for long-term use since you basically have to have a tumor - LOL!  

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Sandy: Not to contradict what you wrote but we are here to learn and exchange ideas for the good of all. Mvasi is very similar to Avastin which is both chemotherapy and targeted therapy that stops the tumors blood vessels from forming. Even though your oncologist knows best,  you might still ask him about once-daily oral RET-targeted therapy like Pralsetinib. There are some on clinical trial you might benefit from.

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On 1/19/2021 at 2:16 PM, GaryG said:

Sandy: Not to contradict what you wrote but we are here to learn and exchange ideas for the good of all. Mvasi is very similar to Avastin which is both chemotherapy and targeted therapy that stops the tumors blood vessels from forming. Even though your oncologist knows best,  you might still ask him about once-daily oral RET-targeted therapy like Pralsetinib. There are some on clinical trial you might benefit from.

Thanks, Gary!  And input is ALWAYS welcome!  I will definitely follow your advice on this.  

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