Forum Discussion
LMK74
9 years agoMember
About to start ac chemo v( petrified)
Hello ladies, next Tuesday is my last taxol treatment,then the following Tuesday ac chemo starts. I'm literally so scared I was crying the other day at the thought of it.please can you tell me your experience with it. I'm to have it 3 weekly by 4 treatments. I'm so scared I'm considering refusing to do it. My questions are:
When does nausea typically kick in?
How long will it last?
Will I be able to even get out of bed?
Do you ache all over?
Is neulasta shot a must or can you refuse?
Sorry for all the questions but I am so freaking out. Please no sugar coating your experience, I really need to know what to expect. I know everyone tolerates chemo differently but I'm so scared. I still have surgery to go and rads.
Thanks for listening
Lisa.
When does nausea typically kick in?
How long will it last?
Will I be able to even get out of bed?
Do you ache all over?
Is neulasta shot a must or can you refuse?
Sorry for all the questions but I am so freaking out. Please no sugar coating your experience, I really need to know what to expect. I know everyone tolerates chemo differently but I'm so scared. I still have surgery to go and rads.
Thanks for listening
Lisa.
31 Replies
- LMK74MemberUnicornkisses, thanks for your reply. I totally get how nervous you are about having a reaction during or after it. I went through chemo with my mum in 2015 for lung cancer( she passed away) and one of her chemos was paclitaxel. Her first infusion when perfect but everyone after that she would have a reaction. Mostly it was a hot burning sensation all over her body, but once they stopped the drip it would go away. So every infusion she'd get more phenergon and instead of taking a hour they ran it over two. When I first started my paclitaxel I was freaking out waiting for something terrible to happen because I saw it happen to my mum, but I never got a reaction. Was your reaction similar to this?.
I already see a psychologist under the gp mental health plan. I've been going for 3 years now. He has been a saviour throughout my mum's diagnosis and death, I've been in some very dark places mentally. Will look into the chemo fact sheets definitely. I'm sure I will be given them on the day of infusion. My god what a journey this is but I'm so grateful for all you lovely ladies. - UnicornkissesMember@LMK74 has the Oncologist given you the fact sheets listing the possible side effects?
I know reading these can be good or bad.
Mine did go through and highlight with me which ones were the most likely and how we would deal with them, this can be reassuring.
I did find a good drug website that listed the side effects and the percentage of people who experienced them, I found that helpful.
I went back to that website for each of the different drugs I was prescribed and printed off the pages.
Knowing that only 10% of people or less experienced a certain sideeffect I found comforting.
Other than that, except for a couple of other online support groups that came up when I googled a question, I left Dr Google alone.
If you want helpful sites, the main BCNA site has a section on resources which has a download page with reputable websites listed on it.
Thank you for your experience on Paclitaxel, I am not sure how it differs from Docitaxel either. But your side effects are also listed in the information sheets on it, so I guess they are similar.
I think my main fear is how I will react to the drug on infusion and immediately after, as I did react to the FEC on infusion.
I am on Neulasta for all infusions which I am happy about, challenging to give myself but make the recovery much better and I don't have to worry about going out in public, or suddenly being landed in hospital, quite as much.
So if you have to have them, they are not the devil that I had feared, as long as you take the Clarytyne for about a week after and manage with Panadol if you get pain.
I don't know where you are, but on the Central Coast NSW our Cancer Care Central Coast support runs workshops, exercise groups and Tai Chi during the year.
Friday we had a Stress workshop where we did a relaxation excercise, designed to minimise a stressful situation and lower stress levels.
As a coincidence I was going for a brain MRI Friday afternoon that I was terrified about, I am very claustrophobic, I took Valium, which might have helped a little, but I went through the exercise over and over throughout the MRI, it wasn't perfect, but it got me through it.
Maybe you can see if there are such groups run in your area, they would help give you skills to help with your anxiety.
And don't forget you are eligible for the Chronic Care Mental Health Management Plan giving you 12 psychologist visits each year. Organised through your GP.
The information on this is also in the downloads on the Resources page.
We are paying all these Medicare levies, might as well get to use some of it.
If you need anything to get you through any treatment, use it.
There are no awards for getting through cancer treatment without additional help.
If you need Valium and can use it, do so. If you need strong pain killers use them.
Be much kinder to yourself than you normally would be.
Thinking of you, Jennie - LMK74MemberThanks cate64, it's great you did well on it. My thoughts are going crazy imagining all sorts of things that might happen.
- Cate64Member@LMK74 the only side effect I suffered with AC Chemo (6 cycles) was hair loss. I had no nausea & the anti nausea tablets given to me first cycle remain unopened to this date. I did not need neulasta injections as my wbc count came back enough before each cycle. I continued to work full time & run 5km each Saturday at parkrun.
- LMK74MemberMelclarity, thanks, your such a lovely person. So glad I joined this community.
- LMK74MemberUnicornkisses, thanks for your experience. Sure sounds horrible and I wish I could run for the hills. I certainly haven't done myself any favors using Dr google. I struggle a lot with anxiety disorder and this whole diagnosis has nearly done my head in. I don't know how different docetaxal is to paclitaxel which I'm on but I've done well on it. Side effects are mainly diarrhea and hand and foot syndrome. The last few weeks my jaws have ached badly and today I've been nauseous all day not sure it's related though. Hope it goes smoothly for you.
EarthWalkerLisha, thanks for answering my questions. I will be glad when chemo is done that's for sure. - UnicornkissesMember@LMK74 my experience was a little different with FEC. My first dose was awful with a lot of side effects that knocked me flat for about ten days before I started to lift from the fog and some of the side effects eased.
The second dose I started to recover after 5 days and with the help of the team had many of the side effects under control, I still couldn't drive for about a week as I couldn't focus my eyes properly or concentrate properly, but I definitely felt better.
The third dose was different again, some side effects were a little worse, some better, but recovery was slower, I expected to feel better again after 5 days, but it was more like 8 or 9.
So don't feel depressed as it isn't always the same. You might have a bad first time and good subsequent doses. Maybe you won't bounce back quite as quickly towards the end too.
I found as long as I understood what could happen, it didn't worry me so much and I just took each day as it came and if I had to spend it on the lounge with a blanket and the TV remote then so be it, that was one day out of the way, on to the next.
Someone said that chemo would fly by, it didn't for me, it was one shitty day after the next for a while, but then gradually each day was better and the relief was fantastic, I felt so good.
Week 3 was such a buzz as I felt so much better, I did lots, went out for meals as I could taste again, and generally enjoyed the feeling good.
This helped me get through the bad days straight after chemo.
I am now changing to Docetaxol, and like you am not looking forward to the unknown.
I don't know how I am going to react but we have got through one lot of chemo, we can get through this. We know a lot more about it all now.
Jennie - @LMK74 The nausea never got any worse or any better. It was pretty much the same routine every 3 weeks, although by the last chemo your body is a little more worn out and tired, so it took me a bit longer to bounce back. Once the nausea was gone I was fine. All will be fine for you as you find out what your experience will be. I hope all goes well and the nerves settle. xx
- melclarityMemberLisa,
I think youre managing quite well considering, the grief can be all consuming. I struggled through Chemo, I didnt have alot of support really and I was quite ill. Head of Oncology the Nurse said to me that generally how you react to your first infusion sets the pace yes. She was right, I did 4 FEC 3 weeks apart and then 8 Taxol it was tough going! I believe your Mum is right beside you all the way as is mine! they actually never leave, you'll find the strength in moments you never thought you could. I have a younger brother with MS and that can be tough at times too as he is living alone. But we rise to our challenges hmmm?? one step at a time, you will kick this to kingdom come and move on. Hugs xo Melinda - LMK74MemberEarthWalkerLisha, I appreciate your reply and glad you told me everything. It's fear of the unknown and I'm so dreading that first one. Im nearly bald now from the taxol and my hair was short anyway so no big deal, i actually had fun shaving it and don't mind at all. Was your nausea the same every treatment or did it get worse or better. I've heard that how you react to the first one is how the rest will be.
It's so nice to talk to others who have been there. Your all so amazing.