I went awol as I’ve just had a terrible run of bad luck.
I was taken into hospital for 4days with suspected heart related side effects. All tests clear and my heart is fine, but it still put a stress marker into my blood and now my onc has decided to stop one of my chemo drugs ? and there is no safe alternative.
I’ve been so positive through diagnosis, surgery and chemo so far, but the onc meeting I had yesterday has really knocked me.
So I continue with just carboplatin for the remaining four cycles.
I’m so scared about the implications of this on the likelihood of return/mets. I shouldn’t be worrying about the future right now but I can’t help it as I know the docetaxal was the best for my tnbc.
Scared for my children, they are only 4&6 ?
Hi Xena
We have missed you on here! So sorry to hear tbis but Im sure your team will make sure you have the best treatment for your sitiation. We cant help how our body functions but at least you can still be treated. Make sure tou have some cover for rhe kiddies as you wouldnt want them to lose out on your chemo week.
If any more worries calk you BC team.x
Thank you ck. I’m not sure if getting a second opinion is worth it or even how to go about it?!!
How are you doing?
Oh Xena, I’m so sorry to hear all that!! But the very good news is that your heart is fine. I can understand your worry about the docetaxel being stopped but you have to put your faith in the oncologist now. They’ve done the math and obviously think this is your safest bet. Please try not to worry about the likelihood of return/mets. I know it’s so hard but none of us can know if our cancer will return, even the medics can only take an educated guess. We just have to hope and sleep a little easier in the knowledge that treatment is improving all the time and new discoveries in cancer research are happening every day.
One day at a time… xxx
Thank you cherry bakewell.
I’m really struggling with the positives of this. I’ve coped so well with the emotional side of this so far, side effects have been doable so far but I really feel my body has let me down on this and it’s so frustrating.
My weak point to holding it all together is my girls. I’m finding the knowledge that the best chemo for the job has been taken away is crushing me and all I can think about is my poor girls being without me.
I think I’m filling in the gaps I’ve not been told (i.e. Prognosis) with worst case scenarios.
Xena
Your girls wont be without you! Breast cancer is one of the easiest to treat but you will be tired ao will need help with them.
Your team will give you the best. Im having EC and not FEC and asked my onc why as I wondered why they are giving me one less…but they researched it at a huge conference and Christies decided that the F was giving more side effects but not really doing anything and my hospital works with Christies. She said sooner or later all hospitals may do this change. I would ask if you have any worries as thats what they are there for and they sont want you to worry as thats part of getting better sooner having peace of mind and trusting whst they are giving you. They wont be annoyed. The first chemo cycle I must have rang the chemo team every day and rang Christies hotline at the slightest thing in the night and everyone was very helpful and we get peace of mind.
At least your heart is fine and you can have chemo, so you must try ro think of the pisitive side and not worry yourself even more than you are! I know easier said than done but for rhe sake of you and your family be positive, strong and get any advice or help to give you peace of mind. Do you have a Maggies Centre near you?xx
Hey Xena, so sorry to hear that you are going through this stressful time. Your team are obviously choosing the best and safest option for you at this time. The marker in your blood has indicated that they needed to make a change in your best interest. The last thing you want is your heart being damaged. Like you my first thought is always of and for my children - we want to be here for them always. So at this moment in time you are getting the best treatment in order to stay and be here with your girls. Treatment has changed and they may change again - you know how it is with these things. You have been so positive so come on put your positive head back on. Ask your questions and trust your team. Sending you a massive hug xxx
Xena, I’ve just read your post and understand how you must be feeling (I found out last week that I’m TN) Maybe it is worth trying to see if you can ask for a second opinion like CK has suggested as I don’t see why the drug should be stopped if the tests and your heart are fine. Sending you a big hug xx
Thanks ladies. I should have come on here earlier as you are definitely good at support, I just didn’t want to scare you all with my story about being in hospital. Thank you for your positivity. X
We missed you Zena!
I asked if SueW had seen you lost after our charity chat. Stay with us too.xxx
Yes Xena we missed you x
Hi Xena
I was due to start fec chemo 3 weeks ago after being diagnosed early August. The day before I got a call to say my ejection fraction results were too low for the chemo. Huge panic on my behalf until I seen my oncologist. She proposed tch chemo as less cardio toxic. I had further heart tests which showed higher results and that I could have fec but although the first results may have been a blip or a false reading my onc couldn’t take the risk and disregard them.
The plan is that I will start Tch next week provided I ‘pass’ a kidney function test on the Wednesday.
I have never felt so let down by my body.
Psychologically is torture knowing my cancer is still growing inside me as the chemo will be my first treatment.
I tell myself to trust in the team as they are doing what’s best for me.
Likewise your team gave your best interest at heart.
X
We can count on CherryB!
Our reseach queen!!! Stick in there girls!!x
Thanks CherryBakewell. I am looking forward to feeling the lump shrink and I am glad I have the option of two arms for my chemo and bloods.
I think it’s just been hard for me as my breast is continually sore and the lump is growing, new lumps and dents are appearing and my breast shape is becoming more distorted each day.
I am pretty positive and upbeat but these delays and extra tests although I am grateful for them I just feel like I will never start chemo. Every test seems to throw up a curve ball.
Will get there though. Oncologist started me on tamoxifen almost two weeks ago to try slow down the tumour growth so technically I guess my treatment has started.
How are you doing?
X
So sorry to hear that you are having a tough time Xena. Don’t stay away for fear of upsetting us. We are all in this together and worry if we don’t hear from one of our number for a while. Take care and I hope things start looking up for you from here on x
We all missed you Xena!
I remember a girl messaged me the other week who had a 6cm, triple neg, grade 3, 8 years ago…and is still doing fine…stay strong x
Aww Jen…im sorry hear that.
I havnt been too good today hun…youre life completely changes doesn’t it…my partner says he’s had enough and is about to walk xx
Thing is Jen I’ve never really been without a man in my life
I know if def nr on my own if we split up…ive got too much baggage now lol x
My treatment is over Jen…as they say chemo not needed as onco has come back low risk…just Arimadex now.
I recorded the meeting with the onc and he said he wasn’t bothered about listening to it…think he’s had enough lol xx