Five years at Stage Four

Thanks,Ed!  I like the treatment I am on as well, although I'm afraid I am the reason everyone's insurance premiums are going up.  Thanks for the excellent video link.  I am going in for my 12th infusion of Keytruda next week.  I have had an excellent response to my treatment so far but there is no way to be sure yet if I am a responder to Keytruda or only the Taf/MEK.  Time will tell, I suppose.  I am currently participating in a trial that my oncologist is involved in that only involves them drawing blood.  They are looking for melanoma tumor cells in the blood and are hoping to make melanoma detection as simple as a blood test with early detection where they don't have to wait for a visible tumor to develop to know that it has occurred or recurred.  Thanks again for responding, Ed.  You are someone that can always be counted on for a topical video link.

cheers,

Maggie

Hi Celeste!  I was hoping to find you still active on here as you are always on top of the latest and greatest information in melanoma studies and treatments.  Thanks for the heads up on IDO.  I have had a great response with Taf/MEK plus Keytruda so far but my disease burden was likely too heavy to make me a long-term contender for Taf/MEK and my lack of side-effects (not even a rash) make me question whether Pembro is having an effect on me or not so I'd like to have something in my back pocket just in case…My oncologist reminds me that I am receiving the gold standard of treatments right now which is true but different treatments work for different people.  Who knows what will work for me?  I'm hoping this is it because it is tiring trying to pick a "next step" all the time.  So many options with no way to know in advance which options will work on me or not.  I certainly don't want to waste my time on a treatment that won't benefit me.  My current treatment has already benefitted me so even if it turns out not to work for the long haul, I'll have no reason to complain.  I was positive I wouldn't last a year when I was diagnosed.  I am pleasantly surprised to have been wrong.  I'm living out my bonus days where every day is an unexpected and welcome gift.  Thanks so much for responding to my post.  I hope all is well with you.

cheers,

Maggie

Hi Barb,

Thanks for your response.  I'm glad your sister is doing well as of your June update (which reminds me that I should update my own profile).  I hope she continues to improve!

Cheers!

Maggie

Thank you for the kind wishes, momsmole.  I hope you never progress beyond Stage two.

Cheers!

Maggie

Hi Swanee!  Great to hear from you!  I'm not sure exactly why I dropped off the MPIP other than to say I was in a funk.  I didn't want to think about melanoma, I didn't want to read about melanoma, I just wanted to get on with aspects of life that had nothing to do with melanoma.  My brother's diagnosis and death hit me pretty hard.  Several months later, September fifth to be precise, I was in a hotel room and found I couldn't move my left arm or leg.  My husband was with me and was concerned that I was having a stroke as the left side of my face was slack.  Paramedics came and a later ct of my head showed tumors (Yay/sarc).  I improved immediately but decided I needed to make a change to my treatment plan.  I believe the grief of losing my brother suppressed my immune system enough for the cancer to spread.  Although my cancer stayed confined to my lungs for four years prior so I do not regret starting with alternative treatment.  I began treatment with my oncologist with Tafinlar/Mekenist right away and also underwent gamma knife for the brain mets.  Can I just say, I LOVE propofol!  I wish all my procedures could be done with that instead of general anesthesia.  To clarify, propofol was used when they bolted on my mask.  I was awake for the gamma knife procedure.  After the gamma knife I did not re-start Tafinlar/Mekenist due to excessive fevers (I had completed three Keytruda infusions by this time).  I was on an aggressive taper schedule for Dexamethasone so as to not interfere with Keytruda but in hindsight, this may not have been a good idea.  A week after gamma knife I had a seizure involving my entire left side.  The same tumor as the first seizure was implicated but this time due to swelling.  This time some permanent damage was done.  I lost fine motor control of my left hand and of course, I am left-handed so I can no longer write.  Even brushing my teeth has been a problem.  However, I am told I can use rehab to learn these skills again.  A follow up ct showed resolution of all tumors except the stubborn one which appeared slightly larger.  But also, three new brain tumors were detected one of which was 2cmx2cm after being off Tafinlar/Mekenist for just over a month.  I had brain surgery on January 30th and went home two days later with some titanium screws in my skull as a souvenir.  I can't believe how "simple" brain surgery can be from the patient's side of it when you have an excellent medical team.  I've had multiple surgeries over the years for different reasons and this was by far the easiest one to recover from.  After I got home, it was back on to Tafinlar/Mekinist and fevers be damned!  Then another round of gamma knife to treat the tumor bed for any lingering cells as well as to zap the other two smaller new tumors and re-zap that old stubborn tumor.  Life was happily uneventful after that.  The next head scan showed only mister stubborn tumor remained but he had shrunk.  All other tumors were gone and nothing new was detected.  My neurosurgeon was thrilled.  He had confessed to not having experience with patients on Tafinlar/Mekenist so this was all new to him.  He was expecting to see my brain riddled with new tumors based on our previous visit.  This was around Easter and I'd had my chest, abdomen and pelvis scanned as well.  Good news all around.  Tumors fully resolved in right lung and tumors all smaller in left lung.  No new tumors identified anywhere.  So clearly, Keytruda had not kicked in for me after three infusions.  I have now had eleven and am scheduled for the twelfth next Tuesday.  I would almost welcome a mild rash at this point just to know something is happening with it.  But nope, I feel fine.  Apart from the left hand and a wonky eye due to one of the tumors pressing against a hyper-sensitive nerve that ceases functioning at the slightest insult.  I'm waiting on some prism glasses that should help some.  But overall I feel I am doing well especially when I considered myself a goner years ago.  Life is sweet.  I am glad you are doing so well, Swanee, and may you continue to do so for the rest of a long and healthy life!  Sorry to ramble on.

Cheers!

Maggie

Hey Juli!  Yes, I suppose a happy dance is in order.  I don't quite seem to be able to muster one for some reason.  I think I grew so accustomed to bad news that I am incapable of believing any good news when it comes to my own condition.  When my previous scans came in looking good, I was waiting for them to call and tell me they were reading the wrong scans or that there was a problem with my bloodwork.  It can't just be good news.  So I approach my next scans with a sense of foreboding like I'm going to get double-punished this time for having good scans last time.  I know you and I see the same rockstar doc.  Maybe we've even been in the infusion room together.  I'm not generally sociable in there.  So you got something in your lung, huh?  A different kind of cancer?!  Like one isn't enough.  Did you have a second pathologist test the tumor sample?  I ask because I was misdiagnosed with lung cancer originally.  Although I would expect any pathologist that evaluated your new tumor would have thought to test it for melanoma and ruled it out.  Mine did not consider melanoma as a possibility since there was only one tumor in my body and it was in the lung he only tested for lung cancer.  But I had no history of melanoma at the time.  My second pathologist was more thorough/creative even though my recurrence was also in the lung.  How did the VATS go?  When did you do it?  When I had my upper right lobe removed it took a long time for my breathing to feel "normal" again.  Hope you're all good and thanks for the happy dance.

Cheers

Maggie