NEED ADVICE PLEASE - anyone that had/has AC CHEMO

LADIES I DEPERATELY AND URGENTLY NEED YOUR ADVICE if you have had or are having AC CHEMO as I am in a very bad place right now and do not know how to proceed and need it figured out in a matter of days.

Some of you may have seen my AC Chemo blogs where I reported some rather severe tummy issues ranging from burning backside to 'round the clock' relenteless gas expulsions and the latest which no chance to write about would be an instance of severe diahrea on day 9 mixed in with dark sticky blood.

I have also experienced significant weight loss in the initial few days post Chemo and significant drop in my pulse rate which went for several days.

Well - I have only had 1 AC Chemo thus far 11 days ago.

I also had all the sideffects I believed to be 'standard' like nausea, tiredness, tinnitus, headache, etc... But the reason I am separating the tummy ones and weightloss is that I saw the Oncologist yesterday and he because of the weightloss and the afternoon of bloody diahrea I had the day before wants to stop my Chemo.

I have a grade/type 3 cancer and the damn thing was 3cm when they took it out. I had clear margins BUT they did find a 2nd cancer in the margin invisible on scans so for all anyone knows there are others in my boobs and/or elsewhere in my body even though the single sentinal node they took out was clear.

I have many other conditions and some serious allergies and my body does not react to meds in normal expected ways so obviously I was apprehensive about Chemo but was repeatedly told that my grade of cancer needed Chemo as was particulary agressive (I scored 68% where apprently anything over 25 is deemed very agressive).

They took a bit too long to start Chemo - 7 weeks post surgery but were reassuring me delays meant nothing as once started Chemo would wipe out anything in there. Also I was only to have 4 sessions of AC as apprently my allergies prevented them giving me TC which they felt more suitable for my cancer. Plus I should have then had weekly I believe Taxol and some other stuff had it not been for my allergies so for me they would only do minimal AC duration then radiation then Tamoxifen or whatever they found suitable.

it was bad enough knowing I was going into this with a watered down version of treatment when I have a particularly agressive bastard festering in me... It was worse knowing there have been delays and even worse fearing own reaction to chemo as there was no knowing what my body would do.

I have never in a single moment in time cared about the level of unpleasantness or pain or whatever the damn thing would do to me - I made it clear to them my only care was to stay alive at the end of Chemo (ideally not with major new illnesses or injuries).

When I was going through discovering the significant weightloss I called the cancer centre explained what was going on, explained pulse change and ocassional feeling of weakness and being dizy - they consulted doctors and said not to worry.

When the 4 bouts of bloody painfull diahrea hit on day 9 I called them and again was told not to worry about the bleed as long as my blood pressure was OK - to treat it as any other diahrea.

So you can imagine my shock and dismay when Oncologist told me yesterday just 3 minutes into consultation (his first question ' have there been any sideeffects that worried you ' and I answered 'just the ones i telephoned about' to see he head no clue I had even been calling so I listed the weightloss, pulse and bloody diahrea) "We have to stop the chemo"

I thought it was a joke but he was serious. Seeing me looking dhocked and dismayed he repeated "We are stopping your Chemo".

Had someone hit me over the head it would have been less distressing and less of a shock.

The rest of the consultation was me pleeding with him in dismay not to just abandon it as obviously I got through it thus far and him pretty much saying "how can we continue when your body is reacting in ways nobody has ever reacted and we have no way of predictng what it will do next".

He is an elderly guy, experienced and a professor in the field. Everyone holds him in great esteem and he pretty much is as senior as it gets in the hospital and I do believe him when he says that he does know a lot about sideffects and how people react and when he says he has never seen it even in medical literature that someone had these 3 particular reactions to AC.

He feels they are that abnormal that it warrants stopping Chemo. Yes that will significantly drop my chance for long term survival as not having full Chemo was big enough deal but now that I have had all those delays by the time radiation is done if they even decide to proceed with that part there are even further delays. Then it will all rely on my being able to tollerate hormone supressants and they already have their doubts I will be able to tollerate them at all.

I obviously do not want to drop dead come next AC Chemo round but at the same time I at the age of 44 am not prepared to just give up and wait for cancer to wipe me out without a fight.

We ended the appointment with him agreeing to consider doing 1 more AC round providing the remaining week and a half are 'univentfull' as I am supposed to have AC every 3 weeks. The other condition is my being cleared by a Gastroenterologist in the meanhwile not that I have a clue how to get in and see one as there is normally 3 to 5 month wait for the only 2 I ever saw. 

Unfortunately my next week and a half will not be uneventfull. I am due to start my period any second now and my periods are debilitating and accompanied with severe bleeds, severe neuralgias, stomach problems, heart probelms, weird unexepected allergies etc at the best of times. Now that I am day 11 of first round of AC and already having intestinal problems, neuralgia and bleeds God only knows what will happen.

So I have to base my decision how to proceed on something other than what my body does in the next week and a half.

I NEED YOUR HELP PLEASE. 

I honestly do not care if the literature says that my 'deal breaker' 3 things nobody ever experiences. To me that means nothing as maybe they are not all that uncommon. Maybe others experience the same but do not report it as like me they have no clue that is 'out of the norm'. I know that I do not tell doctors 95% of what happens to me healthwhise as frankly most of the time we are considered 'hysterical women' that are 'too aware of our own body' if we have too many details - learned that a long time ago... I also know that a lot of time, us women, as long as we get through a hell of some.sort, we just write things off to 'it is over now so why rehash it' and we put up with a hell of a lot od pain and discomfort that at the time may have scared us and never seek medical help at the time.

I need anyone that has had AC Chemo to please help me by sharing if they have had any of these symptoms (or if not frankly please say 'none of that' as knowing that nobody did will help me understand my situation too). If this is trully that bizzare and unexpected then obviously I may have to stop chemo. Or if others had the same and it was a sign of a serious problem. But if others have experienced this too and just part of 'good end/outcome' then at least I know it is worth proceeding and fighting they let me continue chemo.

The 3 things I need to know if anyone has eperienced (at any round / day not just when they happened to me) are:

 - Significant weight loss (as in several kg in under 4 days) while hydrated well, eating normally and not experiencing vomiting serious diahrea etc. 

 - Temporary changes in pulse rate (my pulse rate due to being overweight is in mid to high 80s) but in initial 5 days most of the time it was in low 60s sometimes low to mid 70s and have been having bouts of these drops happen still (not as prolongued as in the initial 4-5 days). I was on icassions feeling weak and almost shaky but would dissaper if I ate anything immediately

 - bouts of runs (diahrea) with presence of dark blood accompanied with strong intestinal pain in lower abdomen some week to 9 days post chemo. This for me was 4 to 5 such loo trips in 4 hours. There was no blood gashing as such - just that it was clearly noticable in the stool and on the toilet paper. The reason I mentioned 'dark blood' is that I know light means a hemmoroid or a fissure that has simply been injured by repeated emptying of bowels. Dark means a bleed someplace in the intestinal tract as blood is not as close to the 'exit' so starts to kind of thicken and darken along the way. Also there were no bleeds outside of actual loo sessions. Not sure if this makes a difference but I believe this bout of runs was the last of the chemo toxins leaving the body as after that any loo trips stopped burning plus there was a return or the more 'normal smell' to any subsequent stools. 

Again, I know I might be asking a lot in asking you to share this but if anyone could help me please I would trully appreciate it as I need to be able to make a decision if to proceed with Chemo which for my cancer is I guess essential and to find a way to persuade the Oncologist to let me do so. If you are willing to share this information but not wanting it on a forum post please message me.

I know it can be dangerous to go against medical advice which is exactly why I am asking for this. I am not stupid to ignore his advice and their opinion and gamble my life. I just know they are not infallable and that there is a chance others have had same or similar issues just did not report them as maybe not living in a weird body like mine that has several preexisting conditions to need to monitor so did not think it relevant to report weird things like these.

Thank you in advance

Jel.