Stopping treatment?

Dear

firstly have you checked your temperature? Chills and shivers are not good ! 
If you have a temp you need to call the 24hr helpline now ! Do not wait till morning . 
if all well you need to phone your team in the morning , they can adjust dosage. Give you better meds to support you . Your red face should calm down , I was like that with the steroids 

please talk to your team - the care about you . 

love 

Ruby Rose  

Hi, thanks for your reply. This is round 7 with the same steroids, but only second round of different chemo. All other treatments besides this one and last i have tolerated, even though pregnancy.

Have checked temp, its 36.5. so within range but still going hot and cold still.

Have taken paracetamol and ibuprofen to try ease it amd get some sleep, 3 hours and im wide awake, rolling around the bed trying not to wake the baby and add to my distress

Going to call my bcn tomorrow when i can and see if she can suggest any relief 

Thanks again xx

Poor you! 

I can't help with a lot of your symptoms,   but Paclitaxel gave me a bad allergic reaction,  to the  point that I had to take 2 antihistamine tablets on day 2 of my weekly cycles until they were stopped.  I had a really red rash on my face and neck,  then by round 6 on my right hand too. It faded after a couple of days,  but the tiny dots of the rash still flare up on my hand when I'm hot (4 months later). Could you try taking some anti histamine maybe,  and see if that helps? They give it on the day via IV as it does cause an allergic reaction.  X

Hi Mummaof4

It sounds like you have had a really difficult time of it, particularly to be diagnosed at 29 and during pregnancy – and now to be going through treatment whilst looking after four children. A massive well done to you for getting through this!

I hope you have managed to speak to your bc nurse? When I read your post your side effects reminded me of how I was on docetaxel (I haven’t had pacliataxel). I had severe pain and my temperature kept spiking. My face was bright red. I ended up in hospital when it went over 38 C. They investigated and couldn’t find any source of infection. A nurse told me afterwards that often the body’s temperature is often raised with severe pain and for me this was the likely cause. It would hover around 37.5C and occasionally go over, and then back down again, for several days. I couldn't sleep with teh pain and painkillers didn't really take the edge off it at all. 

Obviously though, if your temp does go over 37.5, as Ruby Rose says, you can’t take any risk and need to ring your oncology helpline.

I too felt like stopping treatment when I had the taxel (had already had 3 x EC and was feeling really low when I began it). After my experience of the first docetaxel, my oncologist lowered the dose by 20% for subsequent treatments and I was amazed at how do-able that made it (the pain had been so severe that I didn’t think a 20% reduction would be that effective – but it was). This is definitely worth asking your team about. Mentally, I was much happier to have got through treatment even with a slightly lowered dose at the end, rather than stop completely.

I don’t know about the pacliataxel but on docetaxel my side effects were at their worst days 4 to 9 – so I am guessing that once you get past that point, things start to improve a bit?

Sending all best wishes and strength to you. Hang in there, you can do this, you have come so far already. X

Hi, thanks for replying.. the antihistamines they gave me on the day, i think made me too drowsy and set me up wrong for the whole treatment that day. 

Iv had this drug before and not had side effects till a few days in, 5 or so maybe so to come home and be suffering wasnt right.

Dont seem to have a rash, only red flushed face every so often and the bone pain.. its unbearable! Been given naproxen and cocodamol so fingers crossed these help.

Xx

Thank you! I found having the EC during pregnancy was easier than the paclitaxel after pregnancy, this second round is was worse than the 1st one i had. 

Last time symptoms started around day 4/5 and i had to refuse the next dose as it was weekly. This time its fortnightly so gives me chance to recover slightly from this round but the side effects started there in the chair, rather than at home.

I have requested that it gets reviewed before I go again, no way i would be able to cope, just topping it all up, would do me in.

I am almost at the finish line, 3 round of chemotherapy left, 4 week recovery then daily radiotherapy for 5 days a week for a month then thats me.. but doing it this side of pregnancy is so much harder than i thought it would be.. 

Will also keep an eye on my temp, it seems to range between 36.6 and 37.7 at the monent

Xx

Hi Mummaof4

I think you are right to ask for the meds to be reviewed as something is not working for you. It is strange that it is starting in the chemo chair unless it is an allergy or adverse reaction either to the chemo or to the pre-meds. The pre-meds made me very sleepy and unsteady on my feet. I tended to have to go to bed for the afternoon if I had the chemo in the morning. As we know, the effects of chemo are cumulative, so it could be that is why this most recent dose of pacliataxel affected you more than the first one did. Also I don't know if post-pregnancy your body and your hormones are at a different point and this maybe this could also influence the side effects you are experiencing? Your chemo team should be able to shed more light on that. 

I would say that the bone pain must be related to the pacliataxel. I had severe bone pain on docetaxel which I didn't have on EC. I hope the painkillers work for you. If not, and if it is unbearable, you could think about asking your oncologist for a dose reduction.. it worked for me, and I was at a very low point, at the stage of giving up. 

Yes keep an eye on your temp, the numbers you quote are about the same as mine were for about 4 or 5 days when the side effects were at their worst. If your temp stays above 37.5 and doesn't come down, then do call the helpline - just in case.

As you say, you are almost there now, there is light at the end of the tunnel and it will be a massive achievement for you to get through this. Sending virtual hugs to you. x 

Just a thought,  but would they switch you to weekly Paclitaxel,  which is a lot kinder?

Hi guys.

Just a quick, i hope update. 

Thank you all for your input and advice and i guess essentially saving my life. 

After reading through the replies and eventually calling my cancer ward monday (temp was fine until this point)  with a temp of 37.8 that was rising whilst talking to them i got sent to my local a and e. After being hooked up to general antibiotics, a covid 19 test, thankfully negative and some blood cultures i was told I would be staying the night. 

Thursday i was finally discharged after no temperature spike for 48 hours and the allergic reaction i was having to chemotherapy and then the severe allergic reaction to the antibiotics had settled down.

After having spoken to my oncologist and deciding on a 25% reduction and to carry on for this next round at least. 

Got there yesterday (tuesday 5th may) pre meds administered, differently to prevent a reaction again and the cold cap set up and ready to go, my oncologists registrar pops her head around the corner and thinks that because i still have number toes and buzzing feet she should have a brief chat with oncologist. 10 mins later and they decide that its not safe to start todays treatment and that the risks of reaction and severe side effects outweigh the cons of continuing chemotherapy in total!

So in short, i got my wish granted. I am finished chemotherapy!! Iv had my surgery and now im 4 short weeks of radiotherapy then finally done with my treatment! To say im over the moon is an understatement!

Thank you all

Hi

Thanks for sending us your update. I was wondering how you got on. I am so glad that you are feeling much brighter now. It sounds like you went through a tough time and well done for flagging up your raised temp so the hospital could get things under control. You have been through such a lot since your diagnosis, especially having to go through this during pregnancy and so soon after the birth of your baby. Of course we all want to get through the treatment as prescribed but as you say, they have to weigh up risks and benefits and it sounds like your body was extremely unhappy about that last bit of chemotherapy. Wishing you the best of luck now with the radiotherapy and with your recovery. Sending best wishes. x