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Mar 9, 2019 11:16AM
Saulius so much of your wife's path mirrors mine, although I did paclitaxel (another taxane) both times. I was resistant the second time around and I truly hope she has better luck than I did. IBC is sneaky and stubborn and frustrating. My MO didn't want me on any supplements other than the Vitamin D I was already taking, and he okayed trying potassium and magnesium to see if it would relieve the muscle spasms I've been having (it didn't), but I think that was only his personal feeling, not that they would specifically interfere with the chemo. He does support integrative treatments but laughs at the idea of supplements having any effect on cancer.
My radiation oncologist wanted me to wait until I was chemo-resistant before resorting to radiation since you can only do it once. It makes sense that they would want to try chemo again first, but if the IBC continues to spread while she is on Taxotere, you might want to push for radiation again. Mine was spreading too fast to waste time trying a different chemo (in fact my radiation plan changed twice in the first week to include a larger area due to the spread). They typically use a higher dose of radiation for IBC than for standard breast cancer, 50 gray is common for non-IBC but with IBC they often will use 60-72 gray and my RO said she is going to push the limit. I started in January and probably won't be finished until April. It appeared to be radiation-resistant too (not uncommon with IBC), but after 3.5 weeks, part of that time using a bolus, it finally started to respond. They just redid my plan again last week because I lost a substantial amount of soft tissue from the rads.
Keep holding her while she cries, that's all we really need sometimes, just to be held. It helps keep us strong. Sending a virtual hug to both of you.
SouthernSurvivor I never heard of two weeks on, one week off either. Maybe because it is low dose? If you haven't done a taxane before, my only advice is to keep an eye on the neuropathy. The risk is worse with taxol than with taxotere, but it's still there. Consider icing your hands and feet during infusions. I have several friends in my support group who need to use a walker or cane because their neuropathy from taxanes is so bad. I'd rather ice my feet than end up having to use a walker.
Hi Liz, great to see you! I'm hanging in there, worn out from daily treatment and sometimes having to visit multiple facilities in one day, but now that things are finally starting to look better I'm determined to stick it out and the depression is starting to lift. Hope your scans go well!
Hope everyone else is doing well!
IBC Stage IV de novo - mets throughout skeleton, liver, distant nodes, chest wall, skin, tumor in brachial nerves.Still trying to get it to slow down.
9/8/2017, IBC, Both breasts, Stage IV, metastasized to bone/liver/other, Grade 3, ER+/PR-, HER2+ (IHC)
9/25/2017 Taxol (paclitaxel)
2/5/2018 Perjeta (pertuzumab)
2/5/2018 Herceptin (trastuzumab)
11/25/2018 Taxol (paclitaxel)
1/29/2019 Whole-breast: Breast, Lymph nodes, Chest wall