Update on my story

I hear you, Tyais!!! I’ve written repeatedly about the things folks say to cancer peeps that they absolutely totally shouldn’t!!! As you note, some are well meaning. Others….well, what can you say?

You are an amazing light to all of us. Hang in there. Hoping the decadron will help improve your situation with a decrease in the swelling. Wish we could share a cup of tea and a big hug!! Hang in there. love, c

HappyGal! Well thats not what we wanna hear! Well, deep breath, youll only read REAL advice or remarks here at MRF, i may have a cure: “You Put the Lime in the Coconut & drink it all up, you put the Lime in the Coconut & drink it all up…Said “doctor, ain’t there nothing’ I can take?”
I said, “doctor, to relieve this belly ache”
I said “doctor, ain’t there nothin’ I can take?’
I said, “doctor, to relieve this belly ache”….
Not sure if you remember this song from the 60’s!!??
But seriously, only thing i can say is gettin a referral to another Specialist?? There might be something else, read my latest post whats being offered to me, im at the end of the line, its time to throw the Kitchen sink at it!…

My god, who wouldn’t be scared? This is beyond me, but hope there are still things to try after immunotherapy. Keeping you in my thoughts.

Damn. Sorry to hear this update, but I know you are staying strong. I’m praying and sending hugs.

The goof ball cures people throw at us are frustrating. I was captive while the guy cutting my hair was telling me all the ways banana peels can be ingested and cure cancer. Read it on the internet so it must be true.

People are idiots sometimes. Well intentioned, but idiotic. Do they really feel a $&@@&$ banana peel is going to cure all cancers.

I wish you all the best and hope your CBD and THC help with the anxiety.

Lucy

I’m always in favor of a second/third/fourth opinion, but possibly, you’ve been there and done that. I wish this weren’t happening to you, but I’m very glad you posted. I had someone tell me I could beat cancer by removing everything alkaline from my diet. Wow. I guess all those specialists who work on nothing but melanoma every day of their lives for decades and decades somehow missed that one? Sending you hugs instead.

Tyais, are you considering going somewhere else for a 3rd/4th opinion? Maybe something your local docs haven’t thought of? Many cyberhugs coming your way right now!

I know what you mean. For family or people I’m close with, I straight up tell them I don’t want to hear about any more alternative treatments. For the well meaning dunces, I just bite my tongue and try to appreciate that they want to help. It’s hard to do sometimes.

I’m so sorry to hear of this development. Regarding those people offering you “ultimate cure” stories, just a “thanks, I’ll look into it” or “I need something a bit more potent” usually quiets them down. Generally they mean well, even though what they’re telling you is anecdotal and a bit dodgy. You’ve got a handle on the the anxiety part. I pray the decadron takes care of the swelling.

Getting a second opinion definitely can’t hurt. Some people have had success with brain mets with a drug called Temodar. Don’t know if you’ve been offered that. There also may be a trial for which you can qualify. So, seeking a second opinion is definitely worthwhile.

Hi Happygal, sorry to hear about your update. Hang in there. I was going to suggest the same as Linny – maybe it is worth asking for another opinion and the chemo drug Temodar for brain mets, I have read some success stories of people on it. Good luck!