Forum Discussion
Sirrah
7 years agoMember
Postponement or cessation of chemo treatment and your outcome?
hi, does anyone have any experience with postponing or stopping their chemo treatment? I have already postponed my 3rd round of A&C (Doxarubicin and Cyclophosphamide ) for 11 days, due 25/10 and I don't see me having it for at least until 15 Nov which would have been my 4th round date. That would b 6 wks in a 3 wk protocol. Has anyone had to do something similar, either when the Oncologist has halted it or from your decision?
in addition, does anyone have experience of themselves or others having to give up chemo for medical reasons?
Thanks everyone one for your support as although my family have their opinions and Drs give me conflicting advice, in the end everyone is waiting for me to make the final decision. And it is a decision about my LIFE, therefore comments from others facing similar issues mean so much!
in addition, does anyone have experience of themselves or others having to give up chemo for medical reasons?
Thanks everyone one for your support as although my family have their opinions and Drs give me conflicting advice, in the end everyone is waiting for me to make the final decision. And it is a decision about my LIFE, therefore comments from others facing similar issues mean so much!
22 Replies
- SisterMemberThe problem is that you don't know if you've got a good one until after the fact!
- ZoffielMember
I've asked the same question @allyjay Several times. The answer varies according to who you ask. The most honest response, from my current oncologist, was 'We give you as much as you can bear as fast as we can.'
Many medical specialties have been developed over hundreds if not thousands of years; chemotherapy (by that I mean the use of cytotoxic drugs) really is the new kid on the block. As recently as the 60s it was widely derided as quackery by the establishment even within the most progressive of institutions. The research since the 70's is incredible. Even though some of the original drugs are still being used, modern additions to help us cope with the onslaught have made the process more bearable. Doses, and frequency, can be increased because the side effects can be better managed.
Getting bogged down in the stats is just exhausting. The deeper you go, the more contradictions you find. Having an uncooperative or uncommunicative specialist makes things even harder. You can sack them, if you have the energy, but that doesn't mean you care going to get a better outcome (though it can be quite satisfying) In the end I think you have to trust that someone who has spent a gazillion years studying something has a bit of an idea what they are doing. The alternative does not bear thinking about. Mxx
- AllyJayMemberHi there @Sister... No problem at all. I just wanted to clarify that although I had mentioned the taxol in my case, I was aware that Sirrah was still in the AC part of her chemo and that I don't know what is a therapeutic total dose of AC would be. In any case, I don't totally buy the thing that some oncologists say, that is, ten out of twelve doses of this, or a twenty percent reduction in that is an acceptable total dose and that the forfeited drug would make no difference. If that is the case, then why are they over dosing the majority of their patients with unbelievably strong poisons by giving twelve out of twelve of drug A and one hundred percent of drug B when eighty percent would do the same job as one hundred percent of either? Just a personal viewpoint and I hope my writing this doesn't have an adverse effect on some who might have also had their drugs stopped early or dose reduced.
- SisterMember@AllyJay I hope I wasn't sounding disparaging at all - not my intention. I agree that stopping or delaying AC may not be the same as with taxol. I only know about taxol because it became a week by week think for me and I discussed it with the onc.
- SoldierCrabMemberI have responded on another post...
- AfraserMemberCertainly agree that an uncommunicative oncologist is pretty hard to take. As above, the levels at which a chemotherapy is effective (and how effective is defined) are unclear. We'd all love greater clarity, oncologists included, but until we get there we work with what information we have. Which to my mind puts an even greater responsibility on oncologists to fully discuss the pros and cons, as far as they know them.
- AllyJayMember@Sister and @Afraser, I only mentioned the taxol in my situation to highlight the fact that my onco was not prepared to discuss, negotiate, or even fully explain, for that matter, her decision during the AC part of my chemo. This had the flow on effect of my not disclosing to her my increasing neuropathy as I had the previous, very recent history of her non skills in this matter. I gather that Sirrah has only completed dose 2 of her AC chemo, and that at this stage, already due on 25 October and now delayed still further until 15 Nov, dose three, or indeed any further doses of AC (no mention from her of taxol at this stage) is where she is at. Not too sure if only two doses of AC falls into that same category as that of taxol being stopped after dose 9 or 80% of the total planned taxol regime.
- AfraserMemberMy senior oncology nurse estimated that 80 - 80% of the usual dose was probably still a therapeutically effective dose. Even my conservative (good on research but cautious) oncologist was willing to forego the last Taxol dose if I wanted (for a couple of good reasons I persevered, in spite of worsening peripheral neuropathy). I agree with @Sister, a lot of dosages are researched at certain levels but not al all levels. Existing research therefore also can’t tell if a result is cumulative (four doses some good, six better) or spikes at a certain level (four doses mostly ineffective, over seven doses mostly effective).
- SisterMemberI think it's important to remember that the dosage seems to be "best guess". I'm not absolutely sure about all of the chemo drugs but I do know that they aim for 12 Taxol but they don't really know if 9 would be just as effective ( or another number) as there's not been any definitive studies.
- AllyJayMemberHi 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.