Struggling through Chemo

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? 

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.

@Katie46

Well done! Count them down!

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 🥳

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. 

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 :smile: 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.

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 😆

@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.

@Katie4

My oncologist told me paclitaxel is particularly hard on soft tissue - eyes, nose, mouth. I had no problem with my eyes but my nose oozed blood very easily ( I used nose oil, from the chemist) and I lost my taste buds. All resolved very quickly when I finished treatment!