Just scared for my docetaxel cycles...last 3 cycles of chemo, docetaxel...any tips for me please?

I am currently fighting breast cancer....I had abreast surgery for a lumpectomy on my right breast in January, they said initially they had removed it all, good to get back to life.....not a chance.....they said then that they wanted to send my tumors off to the USA for the oncotype DX test which returns in 2 weeks to see if I need chemotherapy or just luckily jump straight to radiotherapy, they were very sure radiotherapy would be all I needed along with hormone replacement pills ....I had just got engaged and said I would wait to book my wedding if this was the case to be sure.

I was then told after returning after the 2 weeks that my rest hadn't returned and that I should go ahead and book my wedding as they feel I should be good for radiotherapy.....they booked me in for another 2 weeks....no results still booked again for another 2 weeks but then suddenly they wanted me to go through chemotherapy options and sign the paperwork for it.....well....this wasn't even a thought on the last appointment....so this scared me....deposit paid down for the wedding, photographer, venue stylist paid for cake deposit made and dress bought etc.....well.....it appears that apparently my tumors were not sent off and would never be, as my cancer was grade 3 stage 3...I would definitely need chemo.

I was devastated.....as anyone is.....I was told this on the phone whilst I was checking for my results...I was then asked on a Friday this is, to nip to hospital as they want to take my bloods for me to start chemo on the Monday!....well....this went down like a lead balloon as you could imagine as I now had 3 days to prepare for chemo and was on the phone listening to this news whilst out with my fiancé and children looking for flower girls dresses and suits in the middle of town! I broke down and must have looked rediculous crying in the middle of town with my family...

Now when they were getting me to sign the chemotherapy paperwork a couple of weeks prior they stated that I'd be on mild chemo and would be ok for the wedding and the side effects I shall be used to by then....3 cycles 21days apart of Epirubicin and cyclosporine, and 3 cycles of T doxetacel.....I had no idea what this was but when I turned up at the hospital chemotherapy daycase....I was told it was the red devil chemo for the first 3 cycles and to be prepared for losing my hair and energy and lots of bone and joint aches.....fun times!

Well I lost so much hair in sections I ended up buying a wig...still got a wedding day to go ahead with....and thankfully after my third cycle lost a few lashes but nothing major and a few eyebrow lashes...I can cope with this.....but the bone aches joint aches and feelings worthless with no energy past midday on the daily I was not doing well.

I found out that it was best to take my injections for the five days at night time as I was feeling super tiered and ready to sleep, after taking ibuprofen and paracetamol and waiting for it to kick in prior to giving myself the jab, then laying down to sleep the injection off....I did this from cycle 2 and now 3. This worked for me but meant I woke up with a headache and sore breasts from surgery spots and scars...throbbing all over and body weakness to the fullest....I have 2 young children to wake up and get ready for school Mind you....so this took its toll for sure.

I am now 6 weeks away from my wedding day and 2 weeks away from my first of 3 doxetacel cycles to end my chemotherapy. 

I am so scared.....how am I going to cope for my wedding....how am I going to be able to cope with my kids....and I am seriously wondering if I am going to be able to just cope in general reading all the side effects, this red devil chemo has killed me....and boy have I struggled daily to just do washing pots cook n clean...

I feel mood swings are a major issue for me right now I go from not talking for long periods of time to just not being able to smile through funny things etc....is this normal? Is this going to get worse? Sore mouth...check.....loss of taste....also check....my breasts were healing nicely but daily they feel so sore again it's shocking.

Any tips of how to make my doxetacel cycles easier on me would be greatly appreciated xx

I've been with my man for years and this wedding is long awaited, but I don't want to be struggling with everything but all paid for now! 

I'm so scared it's rediculous and worry how I will cope, I just wanted to share my story and thank others for being very honest with us about everything they're going through.....we're not alone....others are dealing with much worse and we have a lot to be grateful for I get that....but my scared levels for this next 3 cycles is scaring me more than when I was told I had cancer and needed to lose half my breasts to get rid of it. 

It's nice to get this all of my chest and sorry again for the rambling....

It's great to have a forum like this to just be honest about my thoughts and feelings.....love to you all! Don't give up! We got this! We shall prevail and eventually be us again! ️ ️

Parents
  • Hi Miss-k-1, 

    reading you’re post brought a tear to my eye. I’ve had a similar experience to you, caught early only need radiotherapy nice and simple - instead two surgeries, full lymph clearance and now chemotherapy. I hope you manage your wedding day and got to enjoy it, sometimes it seems the nice day are few & far between! I was just wondering how you have gotten on with Docetaxel? I’m on EC now and soon to move into Docetaxel , l’m also scared to death as I’ve heard it’s far worst! I keep reminding myself that even people who have a bad experience got through it! I hope you’re doing well and coming through the other side! X

  • Hi Miss-k-1, sorry to hear that you ended up going through far more than you expected to. After reading your worries about docetaxel, I thought I'd try and give you some reassurance. I started EC-T chemo in March and finished early July. I too had been really worried about starting docetaxel, after reading all the side effects. However, I got through it with minimal side effects and felt quite well throughout. It obviously affects everyone differentl, but don't automatically assume it will be bad for you. I know it's hard not to be anxious about each new step. My next step is a mastectomy and reconstruction, which I'm also anxious about. I wish you well on your journey moving forward. Xx

  • Thank you so much! So I had my wedding and it was great, but my first doxetacel was unfortunately my last....I ended up having an allergic reaction, doctors and lots of nurses gathered around me unhooked the chemo and started to pump god knows what into me while I had an oxygen mask plastered into my face etc....scary times....but went for the 2nd dose and got pumped full of stuff to avoid the reaction and alas...another reaction, so now I'm being put on something else....no idea what tbh....either way it's more chemo. But after my first dose of doxetacel I won't lie I couldn't get out of bed and did very well on Epirubicin. But boy did my whole body ache...marathon running kind of ache...couldn't move for 2 weeks, so my man had to leave work to take kids to school etc. not fun. I wish you well with your next surgerys and all the best for the future....one step at a time....we got this! Xxx

Reply
  • Thank you so much! So I had my wedding and it was great, but my first doxetacel was unfortunately my last....I ended up having an allergic reaction, doctors and lots of nurses gathered around me unhooked the chemo and started to pump god knows what into me while I had an oxygen mask plastered into my face etc....scary times....but went for the 2nd dose and got pumped full of stuff to avoid the reaction and alas...another reaction, so now I'm being put on something else....no idea what tbh....either way it's more chemo. But after my first dose of doxetacel I won't lie I couldn't get out of bed and did very well on Epirubicin. But boy did my whole body ache...marathon running kind of ache...couldn't move for 2 weeks, so my man had to leave work to take kids to school etc. not fun. I wish you well with your next surgerys and all the best for the future....one step at a time....we got this! Xxx

Children
  • Unfortunate that you had such a bad reaction to the docetaxel, but glad they found something different that was OK for you. I'm so pleased your wedding went well, I'm sure you had a lovely day. I thought uou was just about yo start docetaxel, but have realised that pist was by Lottie4-.I wish you well for the future. Xx