Mar 16, 2019 01:53PM LoriCA wrote:
TT she has been absolutely wonderful and I can't tell you how reassuring it has been to have a doctor who actually understands what is going on with my skin and pays attention to it, like when she immediately recognized it was still spreading the first week after my first CT scan and enlarged the area that was to be radiated. She recognized it before I did, which is really something. I like her so much that I wish she was my MO and not just my RO.
MoreShoes, yes the gym!! I've put on 15 pounds since last fall when everything started going really downhill, and I'm only 5'4" (I've lost 1.5" from spinal compression due to bone mets). I really need to drop that extra weight to feel better about myself. I've always been active and really believe that trying to stay in good shape helps me fight the symptoms of the disease and the side effects of treatments. The pain in my axilla and arm had made even every day movement painful, even the friction of the natural arm swing when walking was painful. I have a small gym in my house for strength training, try to walk/hike as much as possible, and last summer added Qigong for flexibility and mindfulness. It's easy enough for me to pop upstairs and spend even 10 minutes strength training and work my way up, no hassle of having to get dressed and driving somewhere else, no excuses. The endorphins from a good workout are key to maintaining my mental health too!
Looks like I may be the only HER2+ one here right now, but I'm going to drop this info for anyone who might be lurking since IBC can metastasize to the skin very quickly. I've been doing research to try to understand why targeted drugs worked so well on the rest of my body but not my skin, and I came to realize that there are several of us (HER2+) on the Stage IV forum who experienced the same thing, both IBC and non-IBC. I found several research papers that say there's strong indication that the skin is "immune privileged" especially in HER2+ people, and that when the targeted drugs go about killing cancer cells, the cancer goes to the skin where the drugs can't touch it (one papr called the skin a "sanctuary" for the cancer cells). The incidence of cutaneous mets seems to be overwhelmingly higher in HER2+, and there is currently no standard treatment for it. Tucatinib is the first drug to show promise in fighting the mets in the skin (also crosses blood/brain barrier, which is where most of the trial focus is), but it's still in several Phase I trials. HER2Climb, which is a triplet with capecitabine and trastuzumab, is in Phase II. It's one to keep an eye on for anyone who is HER2+.