Struggling through Chemo
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@Katie46 with the AC treatment I have as inpatient for two days to get all the drugs and fluid in, and I still don’t come right until about day 11 (bone marrow injection doesn’t kick in until day 10, where I can’t walk) then I am ok until the next round. @Coastiejas will be interesting to see if your hair curls as it grows back, mine was curly before and I wonder if it will come back curly or straight. I can relate to the fuzz hair, mine started coming out week 3 of treatment. Good to know that there are more fun times ahead with brows and lashes. My next AC round is on 15th and will be thinking of you @Rona on 16th as you ring that bell. Thanks ladies for your encouragement and wish you well as you hit your milestones moving towards the end of the chemo journey.1
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I met with the radiation oncologist today. I'll be getting 15 rounds (3 weeks) targeting my breast, underarm and near my clavicle. I thought it would be longer treatment, so I'm happy with that. I'll have a set up appointment a week or so before I start to map the area, and get my tiny tattoos 😆2
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I had my third Taxol infusion yesterday and experienced a very bad reaction. It started with discomfort in my chest, a hot flash, back pain and high blood pressure. The medical team reacted immediately, and after 30 minutes, I was able to continue the infusion. While I was monitored during the second infusion, this reaction occurred during the third. It was very distressing, but not surprising. The nurse who looked after me seemed unfocused. I had to remind her to give me antihistamines, as she did not check my file on time. There was no 30-minute break between the antihistamine and Taxol infusion as it should be. However, the doctor stated that the reason for the bad reaction was because they removed dexamethasone from the list and only gave me antihistamines and Taxol. As I knew from this network that such reactions can occur, I was not too scared. And also the doctor on site told me that it is very common. However, I reported to another nurse the issue with antihistamine and will talk to my oncologist about it. Previous nurse made a time between antihistamines and chemo infusion of 30 minutes and she told me that it was the rule. Anyway, happy that I am OK.0
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Hi Ronda,
I understand your pain, I too started my chemo treatment in early Dec just before my 51st birthday, on the Horrible AC or the red devil as they call it - I had a lumpectomy to remove my cancer in my left breast and all my lymph nodes in my left arm, (early Nov 2023)
I struggled through the first lot of Chemo being on the AC, I was very sick, was hospitalised more times than I care to remember, I think QLD ambulance service had my address on speed diel (haha) Once finished I moved to the "as they call it "friendly" chemo, well this paclitaxel was not kind to me at all, yes it dose take a shorter time to be administered than the AC dose, but I wasn't expecting all the side effects to hit me as they did, I ended up with grade 3 peripheral neuropathy, so chemo has come to a stop for me, and I'm moving onto radiation soon, so in all I only got 1/2 way through my chemo treatment, it was hard decision to stop my medical team wanted to inset another picc line and carry on - however the picc line was also causing many issues for me from blood clots to failing to work correctly plus very bad skin reactions with all the hospital cleaning solution's they use to clean the area and redress the site, I ended up with chemical burns on the arm,
But the side effects were out weighing the treatment, and could cause long term damage to my life.
I had lost my gross motor skills - so was unable to open caps on bottles, I still struggle to this day, Carrying any shopping bags or washing basket was another issue as I had lost the strength in my hands and arms, holding a pen was a challenge, pins and needs and the numbness in my fingers and toes were horrible, slowly starting to go away now, the pain in my joints was the worst, I needed pain killers to sleep, my knees killed me.
I had already lost my hair, so wasn't expecting to loose my eye brows and eye lashes, but it seems that paclitaxel can cause this too, after doing some research and finding this to be another side effect from the chemo that I wasn't really told about only that I would loose my hair by week 3 of the AC, so I'm a bit gutted to say the least, my eye sight has gone also a fuzzy, so I'm off to spec savers at the end of this month to get that sorted, possibly a combo of both the chemo and old age eyesight, as I wear glasses anyway. Chemo was not kind to me, but I hope it can be a lot more kinder to you and everyone else, best wishes for a speedy return to health
I hope this isn't a too scary read for you or anyone else, but that has been my chemo journey , one I wouldn't wish on anyone, I'm just hoping radiation will be kinder, I have 6 weeks of that to look forward to, oh yay!
Take care, and do what's right for you. feel free to reach out at any time.1 -
Just a word on Taxol, it’s particularly hard on soft tissue - mouth, nose and eyes. By all
means have your eyes checked but tell your optometrist about treatment. Sometimes it’s best to wait until treatment has stopped before making changes to your prescription.Best wishes.1 -
Hi @Maree72, what an awful journey you've had so far, hopefully the radiation treatment will be better.
@GorgyS hopefully they'll get your medication right for the next round. I was given medication to take home and take 1 hour before treatment. They gradually stopped the dexamethasone and antihistamines, but did tell me if I got a reaction they'd put me back on them. So far I've been fine, and I get round 8 on Monday. So glad other people sharing their experiences was helpful to you. The nurses did tell me it can happen any time, but more likely in the early sessions.
Hi @Afraser, the paclitaxel is giving me ulcers on my tongue, AC gave me oral thrush, I can't decide which is worse, but I think it's the ulcers 😔 I'm trying everything recommended, but at the moment I can't seem to shift them. In the grand scheme of side effects I've gotten off pretty lightly so I'll soldier on with the salt rince and talk to the nurses on Monday to see if they can give me anything stronger.
My fingernails are turning brown except for 1 on each hand, bizarrely, and I have an odd sensation in my fingertips but the only issue I have is anything with a ring pull, but that's also me being cautious and not wanting to damage my nails. They are keeping a close eye on it. My feet are totally fine. I have some minor rashes as well on my arm.
My taste has changed, a lot of things just taste sweet, or of not much at all. But strangely coffee which tasted awful on AC is one of the few things that now tastes tonally normal 🤷♀️
Only 5 sessions, or 4 weeks until I finish chemo 🥳2 -
Thanks Katie46 for your response and everyone for sharing their experiences. This is the only place I can discuss openly my concerns and experiences, good or bad. I do not want to bother my friends and family as they would not understand. For those who went through cancer journey, I also want to spare them from going through 'it' again. They need cancer free time. However, I appreciate the help from people who have finished treatment and are still helping others through this network.2
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Hi all, 8 rounds completed. I'm feeling more tired these days, which I assume is the accumulation effect, and I can't shift the mouth ulcers, so eating is painful 😔 soft foods only at the moment. Fingernails are brown and sensitive, but not numb or tingling. I spoke to the doctor at my last session and she said they may look at giving me a week off if the ulcers don't go away, or reducing the dose. Having reached 8 I'm happy to do whatever they suggest. My on oncologist told me that 8 was a good number to reach, and if they have to reduce the dose or stop treatment after that the percentage effect on my outcome would be very minimal, so was not something to stress over if that happened. I still don't feel as tired and weak as I did on AC, it's just the ulcers that are driving me mad. I'm seeing the oncologist tomorrow, so will see what he says.
@Rona did you finish your chemo?3 -
Taxol hates me. I had a fourth infusion today and after 20 minutes I had another allergic reaction. Not as bad as the one with third infusion but the same side effects: discomfort in the upper chest, hot flush with red face and back pain. The oncologist on site decided to stop the infusion and she contacted my oncologist who was not happy to stop taxol. Instead he prescribed Dexamethasone 5 of them to be taken together on the day before chemo, Loratadine ( antihistamines) and Famotidine 2 days prior taxol. Whatever. I will do what they say.2
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Hi everyone, sorry to hear you are having a hard time of the supposed “easy chemo” GorgyS. You are brave to keep going, I would be scared even though I have total faith in those nurses. I really hope the steroids and antihistamines help you to finish your treatment without more reactions. Keep talking to us about it all, understanding this path in life is definitely something we can all agree on.Katie, wow, eight rounds, we’ve come a long way since the diagnosis of “you have breast cancer”. I still struggle with fatigue and that taste but then I spare a thought for the 57 women who were diagnosed today unexpectedly like me and the 57 tomorrow……. so happy then to be on the “other side”.
I stuffed up with my calculations on when I’m supposed to have my last infusion. I went in on Tuesday ready to ring the bell and my nurse said….. are you sure this is your last??? Ummmm, yes! Well no was the correct answer 😂. So next Tuesday is the last.Fatigue is really hitting me hard along with that taste. I’m thinking 4 weeks till I’m off out for Chinese and then a steak with red wine jus soon after. I miss the taste of food. Still on a weight loss because of it.My finger nails are all brown too and painful. My thumb nail is hanging in there. I’ve lost 2 toenails too.I’m working full time with overtime and it’s almost killed me. My body really can’t take much more of this poison.How are you Maree 72? So sad to read what you are going through. No words can help but rest assured you are not alone and we understand. When I was on the AC and not coping (which I didn’t cope most of the time) I told myself I was one of the chosen few to experience this and now that I am almost done with chemo….. I wouldn’t change any of it…… I’ve crossed it off the bucket list 😊1 -
Hi @Rona, I can't believe you are working full time, 2 days is enough for me at the moment. There are soooooo many things I'm looking forward to eating after chemo, goats cheese is still top of the list!
I had an appointment with the oncologist today, he took one look at my ulcers are told me I won't be having chemo next week. Hopefully a break and medication will sort them out. He also said he'd reduce the dose for the last 4 because of the ulcers and my fingernails, although he was less concerned about them. I am happy and sad about the break as I just want to get it over with, but it's only a week in the grand scheme of things.
Hope everyone else is travelling ok.
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Thanks Katie 😊, the bell better be ready for me 😂.I’m dressing up today in a tutu and a crazy coloured wig….. I want to have some fun today!I saw the oncologist on Friday and had to walk the corridor heel to toe to ensure my balance hasn’t been affected before my last treatment, I passed and she congratulated me.
Hope you are enjoying your week off, how’s your mouth? Has your taste come back? Oh I can’t wait to rid this taste, I’m 6 kgs down now so hanging on to 54kgs. Hopefully tuck into that Chinese before radiation 😂. I’m living on cheese and tomato toasties with copious amounts of pepper….. never eaten pepper in my life! Lots of ginger lollies and black tea.Just mulched my 300 veggie seedlings I planted on Saturday before going to work 😂, I’m a glutton for punishment but I can’t stay put.
Better get “dressed up” and go ring that bell!1 -
Hope you have fun today @Rona 🎉 my ulcers are finally getting better, uncomfortable now instead of painful, I don't dread eating now. My body is appreciating the week off, and I feel more positive heading into my last 4 rounds, rather than just tired. My taste never 100% disappeared, but it did fluctuate. At the moment it isn't too bad, I get a faint hint of most things, and thankfully no weird taste in my mouth.
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