Forum Discussion
Chemo 1st one down what a ride
Hi all, I had my first chemo and wow the side effects, the headaches, back pain constipation, mouth ulcers and on it goes . Ended up in hospital for 8 days, and what an awful 8 days, just home yesterday, and next treatment is the 1st April, just hoping for a different outcome, but will keep you posted.
33 Replies
Thank you best of luck with yours xxAbbydog said:So sorry to hear how it was for you.
I was well warned of what to expect.
Was given an oral drug to take prior to chemo which is supposed to help with nausea for around 3 days.
It was Netupitant300mg/Paolosetron 500mcgms, maybe it is working. It has a side effect of constipation. I now know how much Coloxyl with Senna to take and offset that problem.
I'm also given an ice block to suck during one of my drugs. I'm told it helps to prevent mouth ulcers. So far so good.
I hope that your Oncologist can help.- So sorry to hear how it was for you.
I was well warned of what to expect.
Was given an oral drug to take prior to chemo which is supposed to help with nausea for around 3 days.
It was Netupitant300mg/Paolosetron 500mcgms, maybe it is working. It has a side effect of constipation. I now know how much Coloxyl with Senna to take and offset that problem.
I'm also given an ice block to suck during one of my drugs. I'm told it helps to prevent mouth ulcers. So far so good.
I hope that your Oncologist can help. - Hi @Berchel14, I like you had side affects of neutropenia, mouth ulcers , cold, after the first three doses of dense dose AC. The last dose was not at full dose and I was ok.
After the first time I had a small suitcase packed at all times with everything that I needed, and was left at the end of my bed. Everytime I went to hospital or emergency it was always in the car.
I found each time the hospital stays got shorter, first time 6 days ( bad mouth ulcers) second time 4 days and the last one 2 days. After last dose I wasn’t in hospital, I managed to stay at home and rested.
You will get through this , your oncologist can reduce the doses so your body can cope with it.
I lost my hair after second dose of AC, went to hair dresser and had the shave, I thought I have control and I’m going to shave it off, not the bloody cancer....taking it from me.
Listen to your oncologist, they will guide you, rest your body, drink 3 litres of water a day ( I couldn’t drink water as it tasted like metal, so I added a cordial flavour).
Try and eat well, if you’re unable to eat due to mouth ulcers have some hospital grade Sustagen on hand.I ate a lot of yoghurts and soft foods for awhile due to my mouth being so sore.
I hope the oncologist has got you on some good mouth medication for your ulcers.
The best thing I found was over the counter at your chemist, it’s called Kenalog, it’s brilliant, doesn’t taste the best, but it’s like a paste that goes on the ulcer and doesn’t wash of with your saliva.
I use to take 2 coloxyl with senna tablets every night, I tried to walk around the garden everyday, I couldn’t walk to far as I was so exhausted, sometimes I could barely get one foot in front of the other, but I did it sometimes holding onto the bricks of the house.Listen to your body, it will let you know what you can and can’t do, I remember sleeping a lot, at times my husband had to help me to the toilet and shower. You will learn at what day after your treatment you are the worst, mine was around day 5, then I would come good a couple of days before treatment, and then do it all again.
You can do this, yes it’s absolutely a shitty time, but you will come out the other side, I looked at it like yeah I feel so crap, but that’s because the chemo is killing any of the shit that is in my body if any.Your half way through the worst, if you’re having weekly Taxel after it’s a walk in the park.
You have got this, not long now, the light is at the end of the tunnel with AC, stay positive , sending hugs your way xx - ddon said:Many times throughout the AC I despaired of getting through it and I didn’t suffer anywhere near as much as some. It’s a misery that you just can’t describe and just after my last I had a nightmare where I was told I needed one more. I was devastated in my dream. I have had my 9th paclitaxel and coping much better. It’s still chemo but having it weekly just means the side effects are still there but muted and tolerable. It’s a tough gig having chemo and no one around you can really enter in unless they have experienced it. And AC is not your average chemo either. If you look it up it’s one of the most vicious available - probably one of the most effective also which is why we sit there and let someone infuse it into our veins. I would get so down on day 4 and 5 that I would have a tear - filled melt down, mostly alone because I didn’t want to upset my kids or husband, but by day 7,8 I was able to see the end in sight again.I feel for you so much. Hang in there because it will end one day. XxThank you so very much, it really helps to get some insight from somebody who has been there.xx
- It’s bizarre how chemo affects people. You’ve had a horrible time and I am glad you are finding Taxol easier. I had the opposite, apart from losing my hair (fairly inevitable with both and cold cap wasn’t offered then) I had virtually no other side effects on A/C. One later, after I had finished A/C, but how much it was caused by A/C is still questionable. Taxol on the other hand was a pain - taste buds gone, bloody nose, peripheral neuropathy, and so on. No telling really. Best wishes.
- Many times throughout the AC I despaired of getting through it and I didn’t suffer anywhere near as much as some. It’s a misery that you just can’t describe and just after my last I had a nightmare where I was told I needed one more. I was devastated in my dream. I have had my 9th paclitaxel and coping much better. It’s still chemo but having it weekly just means the side effects are still there but muted and tolerable. It’s a tough gig having chemo and no one around you can really enter in unless they have experienced it. And AC is not your average chemo either. If you look it up it’s one of the most vicious available - probably one of the most effective also which is why we sit there and let someone infuse it into our veins. I would get so down on day 4 and 5 that I would have a tear - filled melt down, mostly alone because I didn’t want to upset my kids or husband, but by day 7,8 I was able to see the end in sight again.I feel for you so much. Hang in there because it will end one day. Xx
- Blossom1961 said:@Berchel14 I finished last August.
That is wonderful news and so glad you are through it, best of luck 🙂 - Mazbeth said:Hi @Berchel14 I am sorry to hear you are having a rough time - AC is gruelling and grotty but you are now half way. I did the 4 and I have just had number 7 of the 12 weekly taxol. Taxol has been far better for me and I hope you have the same experience. When I finish chemo I will have surgery. Treatment is a challenge at any time and isolation adds another layer to it. This forum is an excellent place to come to for so much practical advice, it has helped me so much, especially now we are in isolation.I also tried the cold cap and after the second AC I decided it was not working for me. I was also getting really anxious just watching my hair. I am a pretty much ‘give it a go’ person but I know that the cap is a pretty inexact science - works really well for some and does not work for others and you don’t know which group you are until you try it. I ended up shaving my hair - and yes, I cried - but then I moved on. The silver lining to not using the cap was no more anxiety over whether it was working and the treatment was much quicker. I really just sat down got hooked up for the treatment and away I went. My supportive nurses were helping as much as they could with the cap, but as they explained even if a person keeps 30% of their hair, the company counts that as a success. For me, 30% of my hair was extremely thin and patchy too.I am sending you lots of good wishes. Hang in there and take care. X
Thank you, yes I am glad that I tried it, but as you say the time with be quicker so that is the positive. I really appreciate all the feedback back this site is amazing :) 🙂
