jennifer83

Sorry to hear about your recurrences Soonerjen14 and KAF.

I’m headed in for scans and my third treatment this round on Sunday.  I’m nervous about this recurrence.  I’ve lost quite a bit a weight (down 20 lbs since they discovered this – and this did not happen with my last treatment). I also can actually feel pain in my left lung/hilar area where the metastasis is located.  I’ve also been experiencing pain in my left breast for a few weeks now.  I’ve kept my doc aware, but he didn’t seem majorly concerned.  I guess there’s nothing we can do until scans, anyhow.

Everyone.. keep fighting the good fight!

Thank you both for your replies.  The node lit up on the PET scan and I had a biopsy last week that confirmed it is melanoma.  They are starting me on yervoy/opdivo again this weekend.  Same drugs as last time, just switching dosing in hopes that I won’t experience such adverse side effects as I did last time.  Fingers crossed because I’m in a new job!  Luckily MD Anderson allows for immunotherapy treatments on the weekend!

Wishing everyone the best and prayers to you all.

Thank you for sharing your experience!!

That is so scary.. I’m so glad that you have had vision gains since then. I did have a good cry on Tuesday when I realized there was absolutely no way for me to drive. It was the first time that I felt like I couldn’t overcome something with the disease. And it’s just so scary! What if I can’t work? (I’m the only income and insurance provider for the family of five)… What if I can’t drive? How will I take care of my kids? It was an emotional week.

Laughter IS the best medicine, though… and I appreciate your suggestion for some interesting Olympic watching this summer! 🙂

Very interesting! My sugar levels were stable at the ER last Wednesday, but my liver enzymes continue to climb, so they’re watching that closely. Thank you for sharing your response!!

Yes! The swelling prior to the double vision was awful. For at least a month, I’ve woken up with terrible swelling in my upper and lower lids…eyes are puffy and red. I’m so self conscious about it at work because no one knows about my treatment here 🙁 I do ice compression day and night and they don’t help at all.

Neuro-ophthalmologist did diagnose me with Thyroid Eye Disease and they are going to continue to monitor for Graves. I did develop hypothyroidism after my third ipi/nivo treatment and am on meds for that. Doc said that these two things aren’t related… weird?!

Hoping I keep seeing results with the steroids… vision is slightly better and swelling is lessening! Thanks for sharing your experiences!

Those are good questions. My doctor explained that the ipi/nivo combo is supposed to train my immune system to find cancer cells and attack them. The *hope* is, that if cancer cells (melanoma, specifically) arise in my body in the future, that my system will have been trained to combat them. I think immunology is still too new to know if this works or not.. and of course, everyone is responds differently.

I do know that the effects I’ve received can be lifetime. They said I’ll likely be on medication for the hypothyroidism I’ve developed for the rest of my life.

Ah yes.. I re-read… sorry. Your doc is either hilarious or crazy 🙂 I have heard a nurse say that “ipi” is a “bad boy”… I think she was saying that it’s the drug that can cause a lot of side effects or toxicity. I imagine that’s why they pull most combo patients off it and just continue the nivo after four treatments.

Wow.. that is a long time in treatment. You’re a strong one! Congrats on NED… praying it stays that way for good.

Were you still doing nivo when you found the progression in your jaw? Or had you stopped treatment all together at that point? Did they put you back on nivo after it was discovered?

Congrats on NED – you give us all hope!!

Hi tkoss –

Yes, as far as I know, the “standard of care” for Stage IV is the ipi/nivo – 4 doses (as long as you can tolerate it)… and if you’re proving to respond well, they switch to just nivo every 2 weeks (half dose) or 4 weeks (full dose), depending your needs/health/convenience. They’ve switched me to 480 dose of nivo every four weeks. I tolerated the combo pretty well, like you.

I believe they stop ipi/nivo combo at four doses to limit toxicity – despite you feeling side effects or not, it can cause issues with internal organs, endocrine system, pituitary gland, etc… Of course, this is just my speculation on why they only offer four doses.

Glad to hear you’re tolerating treatment well!! Here’s to beating this!!

AMAZING! Congratulations! I hope and pray for everyone going through this sh!t, that they are healed and that they get their second chance.