Just catching up with all the news - been busy preparing the house for the final of my 3 sons to return for the summer post uni and his room had become a dumping ground. This week has been tip runs and sorting - busy busy knowing I may be resting in my recliner like a Victorian lady invalid over the next 2-8 days
Lots of people on here with big decisions to make and new stages of treatment to move onto. Interesting following @sam1204 as I too am looking at 10yrs of various aromatase inhibitors and Robociclmab(sp?!) - TBF I havenāt yet gone there research wise and mentally as await the next update re treatment steps post radiotherapy. My mind is active chemo treatment, radio then the survivorship years and associated meds. I am however reading your updates and musings with interest.
Ditto @foxgem re day3-8 readiness as returned home at 6:30 having just had the first Nab-PAC infusion due to the side effects when I did the first normal Paclitaxel infusion three weeks ago. The Nab-pac looked like frozen egg whites and I was told by my nurse that I was āvery expensive and this stuff is really cleverā! I hope it means I wonāt have the body crushing bones aches and also my forehead is less red, inflamed and peeling this time round. But as we all know itās a magical mystery tour with these infusions!!
I done lots of research early days in my diagnosis and read that nad pacs could be kinder so fingers crossed for you Sounds like a very busy week, you deserved your recliner even without the side effects
I too have Nab due to adverse reactions to ducataxel. Oncologist is sure I have an allergy to the carrier used in both ducotaxel and paxitaxel.
I have to say it has been far kinder than the adverse reactions. The only downside is the time Ćt can take to infuse and the delays that can come from having to have it ordered in and carriered in from another hospital as my regional hospital does not carry it. ALl I can say is pack for the day on the chemo unit just in case as experience has taught me the stuff goes in nicely or it can take hours. the latter is more likely if the chemo nurse is less experienced with the stuff. I think it likes to fight back.
still get a taxel face rash but itās a taxel face rash rather than an itchy spreading hives rash. Taking a daily prescribed antihistimine helps with that. The antihistimine also reduces the bone crushing ache which I suspect comes from the Pelgram single use injection used the next day. Worth speaking with the Chemotheraphy nurse if itās still an issue as they may well be able to suggest ways to help manage that.
Hope the Nab helps you to kick cancer into the furthest corner.
Good luck for days 3-8 those whoāve just had or having infusions particularly if itās a new one (although the Nab sounds kinder if longer to get through)
I have Docetaxel 2 on Tuesday (also my penultimate one) assuming all bloods ok today so Iāll be joining you in that phase. At least this time we wonāt have the super warmth to contend with which I think floored me last time !
Thanks all - seem to have extra steroids to take like with EC - on 3x daily for three days - dexamethazone 2mg one tablet, plus twice daily ondansetron for anti nausea however no injection for me Day 2?! Go figure, again a personalised magical mystery infusion!! My nab-pac infusion took just 30mins with flushes extra either side of it. My nurse was obvs a pro!! He also commented on my āyouthā and guessed my age (despite asking my DOB many times) as 35-40. How to make a bald hairless 51 yr old happy in her NHS recliner - they are good these oncology nurses Feeling exhausted today and spaced out by the steroids but just taking one day at a time. No bone aches yet but early doors for that one, some prickly skin every now and again but kept my compression gloves and socks on all evening post infusion too.
Hope everyone else coping ok post infusions if they have had them this week. One down three more to go for me - roll on 16th July, last infusion date.
I am very concerned about this mole thats appeared on my arm , they have referred me to a dermatolagist but i dont know how i will get there if im in the middle of chemo.
Hi Iām in June group , hope you donāt mind me asking here as Iām about to start on Monday and have been told that sucking on ice lollies during docetaxel and carboplatin is recommended to help With throat and mouth issues. But Iām a little confused as to when to eat them? Is it the whole time ? Before it starts? Or just one now and again? Sorry if itās a silly question.
( tried ducataxel, carboplatin and Phesgo but had to switch to nab paxitaxel after three adverse reactions in a row to the carrier used in ducataxel)
I think the suggestion to try ice lollies is for when you go home. My chemo nurses recommended having chubacups lollipops or similar boiled sweet to help counter the weird taste some get during chemo. Not everyone has mouth issues though, mine has been limited to impacted taste and a weird sensation in my lips but so far no problems with gums nor mouth ulcers. My body decided to pick on different side effects each and every time. TBH expect each time to be different , some will leave you a bit more wiped from side effects than others. It can help to keep a log so you get an idea of the pattern for you and it will also help the oncologist and chemo nurses to provide any drugs you need to help manage side effects and thus make your world a nicer place.
Staying as well hydrated as you can (2L + per day) seems to help some. Eat as well as you can as you can, if need be split meals into toddler sized portions and eat more often. The thread āCancer made me eatā in the treatment tips section of the forum contains a range of recipes and tips to help with possible side effects and you can always ask questions in there.
Make sure you have some head coverings to hand asap, my hair went poof overnight and l cannot wear wigs. Your head will feel very cold even if you only encounter serious thinning and not everyone is able to wear a wig all the time.
Hi @loopylea nice to meet you. There are no silly questions
I havent had to eat any ice lollies but I believe they help if you have taste issues, dry mouth or mouth ulcers.
I used a non alcohol medicated mouthwash twice a day, a mild toothpaste with a sensitive toothbrush and I also had a pack of ulcer pastilles just incase. This has been enough to keep any ulcers at bay, alongside eating pineapple after my infusions.
We welcome any questions at all. Everyone has their own way of coping and sometimes you have to try a lot of different things to find what works for you
@wibbles & @foxgem thank you for responding.. I had heard that sucking on ice chips or lollies could help deter mouth problems.. but thank you for your advice there is so much to think about and thereās so much infO thatās contradicts other info.. hard to know what to believe.. at least here itās tried and tested. X
Hi @loopylea Iāve had 2 rounds of docetaxel and the 1st round I really suffered with my mouth, I didnāt get ulcers or anything but the worst dry mouth that I can only describe as rubbing cotton wool against sandpaper so the 2nd time round I was prepared for it! A couple of days before I started doing salt rinses after eating and continued to day 8/9 and then I used the difflam mouthwash morning and night and also gelclair which I found out about on here! They prescribed me some which Iāve used religiously 3 x a day since the day of chemo and itās been a godsend! Mouth was slightly sore and dry for a couple of days but was still able to eat mormst normal foods whereas the 1st time I could only manage Greek yoghurt for a couple of days! I donāt want to scare you but definitely get ahead of it!
I tried eating ice pops on round 1 and just took a few to eat throughout the treatment which was an hour but it didnāt seem to do much for me, always worth a try though! I too them in a cool pack with ice packs in.
Good luck with your treatments, I was very achey the 1st round and the sore mouth but have barely felt any side effects this time xxxx
Hey @clarabelle1 how did you find your 1st docetaxel? I found the 1st one quite rough on bone aches and Iām sure you remember my mouth issues too!! But the 2nd round Iāve barely felt any side effects from it at all just abit of tiredness, I donāt know if itās because it fell in the school holidays and Iāve just been distracted and busy or my body getting used to it!? Who knows!! I hope your 2nd one follows the same as mine did anyway! Good luck on your penultimate one!! Xxxx
Hey all, how are you all doing? Iāve not been on here much as weve got school holiday chaos here at the minute haha!
Iāve got my last chemo session a week on Tuesday and Iāve had my date through today for the CT planning appointment for radiotherapy on 14th July which will be exactly 4 weeks after last chemo for 19 sessions and then on to hormone therapy, although Iām trying not to get too far ahead and think about that at the minute and just focus on getting this last chemo done!!
Also on the hair front my hair on top as a really thin patch, not completely bald but lots of hair missing but thereās lots still around front and sides so I think the cold cap has worked quite well but this morning I noticed around 1.5 inches of thin baby hairs sticking up on the crown! I think Iāve had some regrowth on docetaxel!!!
Ah thanks @katie91 there are some fab tips there, very grateful to you!! Iām using salt rinse now as I have a sore throat at the minute and trying desperately to get rid of it before Monday chemo comes..
How many docetaxel do you need to do and did you do carboplatin also with it? I have 6 cycles of both to do but only at 80% as I have cardiomyopathy of my heart so they are taking it down to help Protect my ..
Not looking forward to the mouth and throat issues as my throat seems to be playing me up for the last few weeks!! ( recent bout of laryngitis about 4 weeks ago , that I canāt seem to shake off) but GP says no infection thankfully so chemo can go ahead! Yay! just feel that I may get these throat and mouth problems as I already have them at the minute.
Hope you have a lovely weekend and you get no more symptoms..
Hi @loopylea - Good luck next week! I have for all my infusions (EC and Paclitaxel) taken round mini ice cubes - sometimes squash, sometimes just water depending on how I feel nausea wise on the day.
I got the tray off Amazon - first time I just used ordinary ice cubes but then I got ambitious! I have a drink from my water bottle when I have my flush then as soon as they put up the actual infusion I eat ice. I have not done cold capping so really it depends on what other things you are trying to do - thereās only so much cold I could take personally. I wear compression socks and gloves for the anctual infusion and whole day afterwards for the Paclitaxel infusions too rather than icing my feet and hands.
Dear Lord, being on three doses of steroids has been a night of virtually no sleep. Read a whole book till 3:15, dosed through a podcast till 5:05 as achey/uncomfy but not traumatically so but then felt nauseous so took my first lots of morning meds at 5:15 - anti nausea, anti indigestion and anti histamine plus a couple of paracetamol. Can I sleep now please?!
@cazgib10 the transfer to the three weekly Nab-PAC has actually reduced by overall treatment by a week with the same efficacy so I am quids in for length of treatment finishing 16/7 not 30/7! So smalL wins!!
@joodles hi i was just scrolling through the posts and i wondered what ur reactions were to the drug before they changed it if u dont mind me asking ?. Im getting worried about my next infusion as they wont do anyyhing about mine because i had a CT scan and they are putting it down to the contrast dye
Haha I have the steroids when I have my ābig threeā treatment (Pembro/Pac/Carbo) and I was exactly like this! Certainly got my wish when they wore offā¦
Sounds like a very busy week, you deserved your recliner even without the side effects
there is so much to think about and thereās so much infO thatās contradicts other info.. hard to know what to believe.. at least here itās tried and tested. X
just feel that I may get these throat and mouth problems as I already have them at the minute.
