AMcReaderParticipantPhew! Yesterday was a whirlwind…here’s what I learned!
- August 14, 2020 at 12:23 am
– My hemoglobin had dropped to less than half of what it usually is so that explains why I’ve been so unbelievably tired! They believe this is because I have some minor internal bleeding as a result of my new spots. I was able to get a blood transfusion today, so I’m looking forward to feeling more like myself soon!
– The rest of my labs look great —including my LDH which was 143 even with this head cold that I’m fighting through.
– I have 4 new “implants” in my peritoneum. Here is the description from the CT Scan: PERITONEUM: Multiple centrally hypoenhancing nodules in the mesentery worrisome for metastatic disease now apparent. These lie in the gastrohepatic ligament with several adjacent lesions, representative measurement series 2 image 34 of 1.9 x 1.9 cm, lateral to the upper stomach on image 35 measuring 2.7 x 2.2 cm, at the splenic hilum on image 38 measuring 3.1 x 2.1 cm, along the serosa of the gastric fundus image 32, and discrete mesenteric nodule image 56 anterior left upper quadrant measuring 8 x 7 mm.
– Both my current oncologist and my former oncologist who I keep in touch with think this presentation is strange, especially because I’m not retaining any fluid, which is something they both said they typically see when melanoma presents in this way. So, I am getting a biopsy in the next 1-2 weeks to hopefully get to the bottom of what this is. Both of them thought although unusual this could be endometriosis, which would also account for my internal bleeding.
My oncologist and I have already started talking about what the best treatment would be if I have to go that route. She said she would be willing to retry me on Ipi, which I would consider given how quickly it worked for me last time. Also looking at the INSPIRE trial, braf inhibitors and a LOT of other things.
If anyone else has had these kinds of “implants” before, I’d appreciate any advice you have for navigating the aching pain and how to make sure you keep eating enough. That has been a challenge for me over the past few weeks and something I’m even more aware of now that I have to consider going on treatment again.
Hugs to you all!
gopher38ParticipantWell, I had never heard of endometriosis before (my god, there’s a lot of things that can go wrong with the body; miracle that any of us are still standing), but after a bit of googling, this sounds less than pleasant, but not life threatening, so let’s hope it’s that or something more benign.
- August 14, 2020 at 12:53 pm
- August 15, 2020 at 5:56 pm
It sounds weird to wish that you have endometriosis, but keeping my fingers crossed that it is endometriosis rather than recurrence. As painful as that can be, still better than Melanoma. I’m hoping you get “good” news when they do the biopsy. Keeping every appendage crossed for that!
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