Hi there @Sirrah...I've been following your other posts with interest, but was reluctant to respond as I wasn't wanting to sound like "Me too...but worse". Some of what I'll write now, will probably apply to the other posts as well. I'm 60 years old and was diagnosed two years ago. I have (so far) three autoimmune conditions...antiphospholipid antigen syndrome, Scleroderma and Sjogren's. I also have severe osteoporosis, probably caused by an extremely early menopause, (post menopausal at 38), as well as having been on cortico steroids for the past five years or so. I also have grade 3 kidney disease. Then of course the breast cancer and just over a month ago, had an internal carotid artery aneurysm clamped.
The reason I'm trotting out this grocery list of, as they are called. co morbid conditions, is to point out that I understand fully the blurring of which is causing what when it comes to side effects and so on. During the 12 weeks of my AC chemo, I was in hospital for a total of 56 days due to terrible side effects. Febrile neutropaenia (even with neulasta, which by the way caused Acute pancreatitis due to my having Sjogren's. Apparantly having the Sjogren's predisposes me to having pancreatitis with the neulasta, but my oncologist wasn't aware of that. My rheumatologist (a professor at a major Sydney teaching hospital pointed that out to her). Also had a horrendous rash, which brought the dermatologists in...skin biopsies and so on, to try and work out if it was from the scleroderma, or the chemo, or a drug rash from something else. Never got to the bottom of that one, but heaps of cortisone cream eventually brought it under control.
Ongoing high fevers ...39 plus...also never got to the bottom of that. Tested for everything including malaria, TB, toxoplasmosis (from Africa and have cats), moulds and so on. As a result of this, my third treatment was delayed by eight days and the dose was cut by 20%. I was furious. My oncologist wouldn't even discuss it or negotiate. She just said that she was in charge of my care and that she had made her decision and that it was final. Needless to say, when I was up to about dose five of my paclitaxol and started having symptoms of perepheria neuralgia, I said nothing. I continued, terrified that The Ice Princess (my oncologist) would either stop, or cut my dose. I waited until the very last drop of the very last dose had dripped down, then told the oncology nurse. She freaked out and called in Her Worship, who was as pissed as all hell. I in turn told her that in fact I was in charge of my body, that I had made my decision and that that was final. She got the message. I get it that each doctor has their own field of speciality, and so when in my case, each decision has to be run past my oncologist, rheumatologist, neurologist, Kidney specialist, lung specialist blah blah blah...it makes things difficult, but seeing as I'm the Raspberry Ripple patient, rather than the Vanilla one that has to happen.
Pick one of your treating doctors in whom you trust and respect, and ask them to be the gatekeeper, otherwise you run the risk of having a situation such as you have now. This one says "Do this" and that one says "Do that". Others sit on the fence and say "The decision is yours" Really? They are the doctors and you are the patient. They should make everything clear to you, both for and against, and having done that, and being sure that you understand fully the implications of both paths, leave the decision to you. For me, I'm a go hard or go home kind of person. I live with the fear that if this bastard returns, my question to myself will always be, what if my dose hadn't been reduced and delayed. My understanding is the delay is not so much of an issue, and according to the onco, neither is the reduction in dose.