Little update with TL;DNR question
Q: What do people think of ports? I did a year of every-two-week infusions and blood-draws, 3-month scans, etc. between Feb 2018 and 2019 with just pokes in the vein. Didn’t bother me much, but I’m tougher to get a vein than nurses imagine when they first see me. I have very visible veins, but it usually took a couple or three attempts before they succeeded. Turns out that I’ll be starting the combo now on Nov. 1st. Not sure how long (I’m sure we’ll discuss it on the 1st visit), but I’m guessing maybe two years (if I’m lucky, meaning it’s working). I saw that there was a thread about ports a couple of years ago, and the majority seemed to think that they were a good idea. Wondering what the current group thinks? I’m hoping to stay active (mostly biking) during treatments. Thanks for feedback.
General update: as background, I was DX’ed 3b back in Jan 2018 with mel on upper back. Blind clinical trial of either nivo or nivo/ipi from Feb 18 to Feb 19. All clear scans during that time.
Aug 19th derm visit showed 3 new suspicious moles, which all came back as mel. New spots widely dispersed from butt to shoulder. CT scan and PET still clear though. Onc decided to treat them as new primaries with 3 simultaneous WLE/SNLBs (all positive for trace mel), but … new derm visit a couple of weeks later showed 4 new small spots/moles (really probably just not noticed before) on back. All mel, so 8 cutaneous spots, all pretty much on back, butt and shoulder, which they now think is spread of original on back, so stage 4 (and 3 additional WLE/SNLBs were unnecessary).
Liked my onc, but I really don’t think he’s a mel specialist, so decided to look for someone more focused on melanoma. Doctor’s recommendation led me to a guy at UofMinn Masonic Cancer Clinic, who I really liked, so I’m transferring there.
Also, unblinded from clinical study and I was only getting nivo, and they FINALLY tested from BRAF, which was positive.
Another CT scan and MRI when I transferred to UofM both still showed nothing other than the ground-glass area, which didn’t light up the PET, and the new onc thinks is residual from nivo treatments (main side-effects for me were shortness of breath, coughing and irritation in lungs). So still no tumors that they can see inside, but spread on the skin.
I feel like the opdivo was doing something, but not enough to knock out the mel. Now going to try the combo. Hope it gives the opdivo a little extra boost. Think treatments will go on longer than the year from the trial, at least I hope so.
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