Docetaxal stopped-feeling scared

[Mishy18]

It's worth a try! Good luck Xena I'm sure though that your onc is looking after you well x

[Xena75]

Thanks for this mishy, I will ask but I’ve had two cycles as just carboplatin now, so I’m not sure if they would add another back in?!

[Mishy18]

I would ask your onc about the abraxane Xena apparently it's usually the preferred go to if you can't have Doxetaxal or palitaxol which I can't have either, hope that helps it's just good to know that there is something else out there xx

[Mishy18]

Hi Xena had dose on Wed just gone next one 1st Nov it's usually used to treat mestatic bc and SBC so having a reduced dose but very similar to Doxetaxal in SE along with some nausea x onc said if I had been her2 he would have cancelled chemo altogether due to having a severe reaction but as TN wanted to try the Abraxane so I could continue which I was relieved about more the fact knowing there is another drug available to me if I ever had a recurrence as the Doxetaxal is not an option ever due to the severity of the reaction.

[Xena75]

Oh that's interesting. Fingers crossed for you. When are you due your next cycle?

[Mishy18]

Meant abraxane x

[Mishy18]

Hi Xena going to have two rounds of a, drug called Braxane starting this week probs Thursday as TN he didn't want to cancel out 2 treatments without trying something else first fingers crossed I can tolerate this one as it's my only option now xx

[Mishy18]

Hi Xena I will keep you posted x I'm crossing everything!

[Xena75]

Good luck for tomorrows meeting mishy, I'd be interested to hear how you get on. Fingers crossed there is a backup plan you feel happy with. X

[Mishy18]

Have a meeting Mon coming with onc Xena so hopefully will find out what is what, my first dose was the milder reaction at end of infusion but this one was severe in comparison within first 10 minutes so probably why they just stopped it and decided no more I'm def having rads but don't know whether I get more chemo I've heard that the weekly one is good for TNBC treatment so fingers crossed if you feel like you are not getting the answers I would ring and ask for an urgent app with your onc it's all about you at the end of the day, my BC nurse rang me today and she explained they always have a contingency plan in place for these can of situations fingers crossed we get there take care x

[Xena75]

Oh Mishy, it's rubbish isn't it. I also had a reaction to my first docetaxal, nurses were very quick to stop it, but it was alarming. Like you say, you can feel your chest closing and head getting hotter, the blood banging about in my head! Over very quickly thankfully, but the onc did mention that this could be why I reacted, like a pre warning my body wasn't digging it. I didn't react the second time though?!!

i asked if they could compensate with more carboplatin, but it doesn't work that way and would make no difference. 

Im also nervous about delaying rads. My onc suggested waiting until new year as Mine are due to start Xmas week (bloody typical!) but I've not looked into how they work etc yet, so I shall be asking the rad man what effect delaying start of rads could have in Lieu of reduced chemo. As being tnbc a swift start to chemo after surgery is key, I'm wondering if it's the same for rads...don't give the bugger half a chance?

sorry lots of questions and thoughts all garbled out there!

[Xena75]

Thanks for your answer Eliza. This is interesting as I hadn't realised there were weekly chemo. I suppose it wouldn't hurt to ask!

[Xena75]

Thank you for your reply blueash. It was the cardiologist that recommended for a change of chemo initially. Even though at that point the oncologists were happy the doce wasn't causing heart problems. Now they have found it in the literature they defo won't risk giving me it. I guess they are just sure it was that and not the combi of the chemo and arthritis drugs. I do understand hear trumps all else though, as a knackered heart is good to no one, but it is still very scary stuff.

[blueash]

Hello Mishy,

My chemo was stopped early too - I had all docetaxel because of my heart  I am not allowed FEC. Anyway I also got Carboplatin and Herceptin so I am not triple negative which was why when my blood count went too low to safely continue they stopped me and brought the rads forward and I continued to have all 18 doses of Herceptin.

[Mishy18]

Jumping in on this thread as I too have had my Doxetaxol stopped brief history, had planned regime of 3 fec and 3 t for tnbc invasive ductal with some high grade decisions and 1 macromestases in sentinel node 1 out of 5 nodes removed involved clear margins for all
1st fec floored me with horrendous side effects has two hospitals admissions onc reduced dose 2nd had very similar SE problems so for 3rd infusion took out f just had EC fine no complaints, first t which had been reduced by 20% following fec problems had slight allergic reaction following infusion treated and fine day 10 had Neutropenic in hospital for 3 days with Iv antibiotics (was taking the filisgram too)
Today following positive bloods went for 2nd T, big mistake had a very severe reaction after 3 mins of infusion awful thought I was on my way out team were the in seconds removed chemo had antidote then put on bed and taken next door to emergency admission to be monitored.
My onc register came to see me, explained I'm not allowed any more Doxetaxol ever it could kill me! My immune system had recognised it didn't want it and attacked me, had severe high blood pressure causing extreme pressure in head could breathe and face and throat swelling I'm triple negative and like you told it is the only effective drug to treat it.
Having to wait till MDT team meet to decide wether they can replace with different drug although technically cancer free due to surgery mine being curative treatment to prevent risk of recurrence I'm scared that by having last two treatment removed this may affect my outcome as it was also explained that due to history of problems onc may decide I cannot have any more chemo due to detrimental effects on my body have some neuropathy already and body just fees battered by it all would be really interested to know if anyone else has experienced similar problems to me as to where I go next I really need some reassurance that by cutting chemo back can cause problems later on also very aware my onc did say he didn't want to kill me with chemo and was happy to tweak the treatments but taking two out is very scary for me, I do have radiotherapy to do so just hoping if the decision is no more that maybe could have more radiotherapy instead x

[Eliza]

Hi Xenia. I had 4 cycles of 3 weekly carboplatin and weekly paclitaxel (now gone onto 3 cycles of EC). The carbo/taxol worked really well for me. I'm not sure though whether paclitaxel is just as problematic as docetaxel. Worth asking, maybe? Especially as because it is weekly, the dose at any one time is lower. Eliza xx. Editing this to say that I too am triple negative.

[blueash]

Oh Xena I don't quite know what to say to you. Can you ask to see a cardiologist? I mention this because I was given all TCH precisely because of my heart. I take blood pressure and cholestorol pills and when I had my fisrt scan for the Herceptin they would not give it without the say so of a cardiologist. In my case it was only a phone call from the oncologist to the cardiologist but because he said it was OK they went ahead with it.

[Xena75]

Hi. I've had 2/6 cycles of carboplatin and docetaxal. Following both cycles on day 3 I had chest pain. First cycle I thought bad heartburn, second cycle I rang my onc nurse who told me to ring an ambulance.
Long story short my heart wasn't happy.
All tests done (echo,angiogram,ct scan, X-ray, ecg s and 24hr monitoring) came back clear. The only sign of a problem was a very low amount of a marker in my bloods. (A heart attack shows amounts in the tens of thousands apparently, mine was a couple of hundred)
Initially it was thought my arthritis meds caused it when combined with the chemo, so they have taken me off them, but having been told Docetaxal and carboplatin are the least likely to give toxicity for the heart, they have now found buried deep in the extremely rare side effects that docetaxal can increase heart toxicity.
Because of this my onc has decided to withdrawer the docetaxal and there is no chemo he can replace it with.
There was no discussion about reducing the dose, or trying it once more now I'm off the arthritis drugs (which do list heart toxicity in the side effect-I have been on these a year with no problem)
I'm gutted and so scared as I have tnbc.
I also have children who are only 6&4!!!
I am having a hard time accepting the withdrawal of this treatment without trying a lesser dose now I'm off the arthritis meds. Or even to be monitored during the first week on a reduced dose.
I'm wondering if it's worth a second opinion?
Or maybe I just have to get my head round accepting it, but accepting the most affective chemo for tnbc has been taken out of my care plan and there could be implications for this is so so hard. I feel so sad and like my body has let me down, as overall I've done so well with side effects so far. 😓