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!

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

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.

@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.

I stopped the AC after 3 out of 4 rounds because of side effects. I had already got a significant reduction in tumour size based on MRI so my oncologist was happy for me to move on and then I completed all 12 rounds of paclitaxel.The pathology after surgery was very good, according to the breast surgeons, with only minimal traces of cancer in the breast (clear margins) and in 2 of 33 lymph nodes removed.

Postponement or cessation of chemo treatment and your outcome?

22 Replies

Sirrah
Member
7 years ago
Hi @AllyJay I love that u put us in the younger category! I am 62 so just a couple of yrs older than you, and yes before this sad and sorry episode I felt like a "youngish and fit for my age person, who exercised everyday, and as I am retired didn't think I stressed much for a Type A, likes to b in control personality!
Regarding the gerontologist comment, that is a coincidence because one of the Drs on my Neuro team is changing his speciality from ? to gerontology. Do to the high incidence of neurological problems of the elderly like stroke, Parkinsons etc Dr.T is working with the Head Neurologist and because he does all the procedures and day to day stuff, eg lumbar punctures I have seen him the most. He even rings me once a week! So besides my GP he is actually my gatekeeper at the moment. Unfortunately he and the Oncologist don't sit down together but have rung each other occasionally. Dr.T has organised some Physiotherapy and Speech Therapy which I will start soon.
Btw I have since noticed my reference to being susceptible to colds and flu, was hilariously autocorrected to flies in my last msg! Got to watch those flies too, lol!!
With reference to your first post about not knowing if I was going to have 12x Paclitaxel, I have pretty well decided not to go ahead with that either. As I explained to my original Oncologist I am too worried about the similarity of the peripheral neuropathy that I experienced before with AIDP (Acute Inflammatory Demyelinating Polyradicular neuropathy) aka Guillain Barre Syndrome.
Unfortunately that doesn't leave me with so many chemo options but my 2nd opinion Oncologist who I think I will b changing to, says there r older style chemo drugs she could mix for me if I decide to go down that route when my neuro team give me the ok.

well, wishing you continued improvement in your health, Pauline (Sirrah)
AllyJay
Member
7 years ago
Hi there @Sirrah...thanks for the reply and mention. I think anybody who has more than one medical thing going on at the same time, has additional difficulties as the treatment one doctor wants, is contraindicated by another condition or medication prescribed by another treating doctor. People older than me are often put under the overall care of a gerontologist, who acts as the go between between all different treating doctors and acts as this sort of gatekeeper. Such a doctor for mixed diagnosed younger people would be a good thing in my view.
Sirrah
Member
7 years ago
@AllyJay Sorry it has taken me a few days to thank u for your message. Let me say that u r certainly tackling a lot more medically than me! I hope that u continue to have great medical help and advice. I have not had to have any treatment for my auto immune disorder for many years but apart from residual nerve damage in my face that will never change, I have always felt just a bit susceptible to colds, flies etc. not helped by being exposed to lots of germs in the classroom! photos can b tricky and it is always worse when I am tired!

However I know the muscles in my body were really strong before (or about the time ) I got the breast cancer because I saw an exercise physiologist for about 4 months before I went skiing in Aug 2017 and it was the first time in many years that my legs weren't screaming "u should have done more exercise!!" Lol. The sad thing is that I was told yesterday that cell changes WERE evident and were missed by whoever read my July 2017 mammogram and called it clear! Therefore my cancer started when I was the fittest I have been for over 10 yrs. GP did some,blood tests in Sept when I got a cold and again in Nov of that year but said all negative. I maintained from Sept 2017 that something was wrong because I just couldn't get my fitness back to that great level again. Got viral pneumonia in Jan this year and couldn't shake it for 3 mths until a Naturapath gave me high dose vitamins. Wonder if I can take them again? Oncologist said not to take any when I started chemo, but have postponed it indefinitely until we get test results back.

Well, sorry I just realised that I have been reflecting on the past 18mths and all I had wanted to do was to say thanks for your support and hope your weekend is peaceful and joyful. I intend mine to b as my son and his fiancé are arriving to visit me from UK for a couple of weeks.
Pauline (Sirrah)
Sirrah
Member
7 years ago

Vangirl said:

I stopped the AC after 3 out of 4 rounds because of side effects. I had already got a significant reduction in tumour size based on MRI so my oncologist was happy for me to move on and then I completed all 12 rounds of paclitaxel.
The pathology after surgery was very good, according to the breast surgeons, with only minimal traces of cancer in the breast (clear margins) and in 2 of 33 lymph nodes removed.

Hi Vangirl, hope your reconstruction is healing well! Thanks for the valuable information! Could u tell me about the side effects that u experienced when taking AC please, my Oncol. says there aren't any! It is encouraging that u had a reduction in tumour size from 3 out of 4 rounds. I'm glad to hear your surgery went so well, was that after your Paclitaxel? Could u tell me if u had any side effects from the 12 X Paclitaxel?
kmakm
Member
7 years ago
@Vangirl Mine did but it takes a few months. My belly scar is not awesome and is still very red. We all heal differently. K xox
Vangirl
Member
7 years ago
@kmakm the tummy bit looks a little odd and quite confronting, but I'm very happy with the straightness of the scar and the needlework.
Foob is a good shape but sitting a little higher than the other (B/C cup). I'm happy with the outline under clothes and it should drop a little according to the plastic surgeon.
kmakm
Member
7 years ago
@Vangirl Sounds good. Are you pleased with how it looks so far? My stomach is still tight six months on. I've got used to it now.
Vangirl
Member
7 years ago
All very straightforward so far @kmakm
Still bruised on foob and tight around tummy but awaiting sign off to go home today 😁
kmakm
Member
7 years ago
That is excellent @Vangirl. How are you on the recon front? K xox
Vangirl
Member
7 years ago
I stopped the AC after 3 out of 4 rounds because of side effects. I had already got a significant reduction in tumour size based on MRI so my oncologist was happy for me to move on and then I completed all 12 rounds of paclitaxel.
The pathology after surgery was very good, according to the breast surgeons, with only minimal traces of cancer in the breast (clear margins) and in 2 of 33 lymph nodes removed.

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Postponement or cessation of chemo treatment and your outcome?

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