- January 2, 2017 at 4:02 pm
Good morning and happy new year! I have not posted in several months, but do read posts from time to time. I figured it was probably time for an update…
I was diagnosed Stage IV in January 2015, which was a recurrence from my first time with melanoma in 2006, Stage I. In February 2015 I had surgery to remove the tumor from my back, and started the ipi/nivo trial at John's Hopkins. I could only tolerate one dose of the combo, and was hospitalized a few times due to what we now know is my new allergy to Ct scan contrast (never had an allergy in my life before IPi/nivo, now have a few new allergies). I continued on just nivo after a short break from the first dose of the combo, and had some side effects, all were manageable. Scan in December 2015 showed NED, but the next scan in February 2016 showed new nodules in my right lung again. Continued on nivo and still getting nivo every other week presently.
In February 2016 my blood sugar went completely wacky, and I was diagnosed with type II diabetes. My oncologist said I was probably on my way to diabetes on my own (at this point I was the heaviest I had ever been, I had stopped exercising, and had some unhealthy eating/drinking habits) but that the treatments might have just hurled me into it. My endochronoligist agreed, and got me started on twice per day insulin shots. That was a wake up call for me, and I started to make some lifestyle changes. Basically, watching what I eat and lots of exercise has helped me to lost close to 50 pounds since March 2016, and I am now transitioning from insulin shots to metformin pills! And hopefully someday I'll be able to even get off those! It is my goal to be able to actually RUN the Miles for Melanoma 5k in DC, which is usually in May… fingers crossed!
Since I have the allergy to Ct scan contrast, we have switched to just doing PET scans on me for the time being. My latest PET in October showed NO sign of disease, to which I breathed a giant sigh of relief! My next scan is on January 30th, and I'll get the results on my 41st birthday, February 2nd… nothing but positive vibes here! If this next scan is still NED, I will get to finish nivo treatments in March, completing two full years of treatments. The thought of stopping treatments and not seeing my doctor and nurses every other week is somewhat terrifying, but of course also a great relief. There are mixed emotions, for sure, and I think that is what I am struggling with the most now.
I am (somewhat) cautiously optimistic, and have started making plans for my next steps in life. I'd like to move back to Chicago, and have even been looking into the possibility of having a baby! The docs at Hopkins said once I finish treatments they can get me into their fertility clinic to see if it's even possible for me now. Again, fingers crossed!
Thats about it for now, sorry for the lengthy update! My prayers are with all of you. I have made some wonderful friends through this board and the MRF, and am looking forward to seeing some of you in 2017!
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