I'm Steph from the Community team, I hope you don't mind me posting here.
We've been asked to create a new thread for chemo discussions this April, as the existing threads were getting a little long.
Please do let us know if you have any other threads you think would be useful to link here.
Thanks for doing this Steph.x
What is a Community Champion?
Hi Steph could you place this link on please it's hints etc
Thanks Steph. I was losing my way with the Feb March chat. I have TNBC and had a lumpectomy in Jan. Started four courses of accelerated EC at the beginning of Feb and will do four more of Paclitaxel before radiotherapy. I have had three rounds of EC now and had infections after each one, despite drinking gallons of water and taking all the meds at the right time. For the second time my next round has been delayed. Sleep deprivation is a major issue for me together with the he constipation getting worse the further in the treatment I go. I now have Phenergan to help me get more than four to five hours sleep as get so exhausted I think I am open to anything. In addition I have had a cough and reduced right sided lung function for almost three weeks. Had ECG’s, chest X-rays etc and almost a CT scan, but there is no indication of anything wrong. I have always doubted my ability to cope with with being ill as it is not something I have ever been, and will think very seriously about whether I stop treatment after my last EC. It weighs heavily on me that this process has such an effect on event aspect of life. Has anyone else decided to quit halfway? Gwennie
Oh no Gwennie, sorry to hear it’s been so hard for you. I’ve just had my second EC delayed because of my blood count and I’ve not done so well with the side effects either. Very painful constipation and really tired / drugged feeling right up to day eleven and twelve but still feeling shattered now. My gums have just started bleeding and my teeth hurt too.
Bloods again on tue to see how I’m doing. Have they reduced / changed your dose at all? Luckily I haven’t had an infection but I do keep feeling like I’m getting a cold especially in the mornings / evenings but it hasn’t materialised yet.
Hi there, I too have never really been ill and it's weird to think we are undergoing treatment that makes you feel ill when I was fighting fit before hand. I feel like it's mucked up my whole life. Everything is on pause! I'm trying hard to mitigate side effects by reading up on them and following advice gleaned from these chats. Also trying hard to stay positive. Easier said than done. But I'm desperate to survive this and come out the other end. Easy for me to say... Only had one EC treatment so far. Long, long way to go. Got a chart and ticking things off...feel that will help me too. Hang in in there and keep asking for help to manage SE from the medics. Thinking of you. Sounds like a tough situation at the moment.
Morning Red Ruby they reduced my dose by 20% after first round as was hospitalised for three days. The second round was better til week two when I hit another infection and this time no infection evident til day 8, but tied with my chest and no sleep I really am struggling to even do anything physical. Get hot sweats with minimal effort. Feel very whingey and winey but just want to feel well and changed the way I take my steroids and are now talking of stopping them altogether. I should not make decisions when I don’t feel well but this is day 11 now she. I expect to be better
Sorry to hear you’re having such a hard time Gwenniepennie it really is an emotional rollercoaster and it makes it harder that for most of us we felt fit and well before chemo. I had a really low month with cycle3 of EC but using relaxation and Headspace app ‘Coping with Cancer’ I managed to turn myself around. Acknowledging the anger, sadness and how I was feeling about having chemo when I didn’t feel unwell before starting it was a turning point. The constipation and nausea were awful, I have found taking Omeprazole has helped loads as I think the steroids caused real gastric discomfort. Taking them at 7am and 12.30 completely changed how they impacted my sleep. Starting Psyllium, prunes and Senna from day before chemo helped constipation resolve by day 3 which was bearable. I went into chemo very reluctantly but as my diagnosis is inconclusive whether Her2+ or TNBC and both need chemo to give us the best long term chance of survival I decided to trust my oncologist and do what was necessary for my family as well as for me. Do I feel well...not really but I have only had 2 trips to hospital and neither serious unlike you, just a delayed 3rd cycle by a week. I try to keep busy or distracted when I can, keep my body as calm as possible, eat as well as possible and take it a day at a time...it’s a really strange season of our lives but it WILL come to an end, please think carefully, you have come a long way, please speak to your team and tell them how you are feeling. Wishing you the strength to cope with what this journey throws at you whatever you decide. Sending virtual hugs
Wishing you all peace and calm in the storm...with a helping of laughter and joy to bring healing ️
I second what Dclem4 says, please speak to your team, they will do everything they can to get you through your remaining treatment, and you will look back and say I did it .. x
I’m at the unit right now having my 5th treatment, I didn’t want to come, as none of us do, but just having a glimmer of light to the end of this part of treatment pushes me on, come what may, we will all get through it and come out the other side.
God Bless xx
Out of darkness cometh light
Hi Gwenniepennie I totally know what you mean and how awful it is when you are so healthy pre chemo and now feel a mess, as I also do. Ive had 3 EC'S (2 hosp visits) and have now had 2 doxetaxel with herceptin and pertuzumab as well. One thing I can tell you that anyone Ive talked to in the chemo suite (And I talk to everyone to pass away the numerous hours) they tell me they have been absolutely okay on the pacilitaxel even thought they also had really horrid experiences on the other Chemo's. Just thought it was worth knowing this before you make any decisions especially as you could have the worst possibly over with. Ive felt like quitting every single day especially the first 10-12 days when ive had every side effect going and some days dont even feel like interacting with my children. Im working so hard to keep the mood up and listening to Deep Body healing in your sleep on utube to put me off to sleep (works within minutes). have a good chat with everyone around you and dont be afraid to just say how bad it is when thats how your feeling. Sorry your having it so hard xxx
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