May I still join you - I am somewhat late to the party, started Jan 29th. I actually stumbled over Sarahc_123’s question about fasting, which is why I signed up after all.
But maybe I should introduce myself first. I am 53 (since last Sunday), with TNBC, found by myself on Nov 29th, @2.8cm. I am undergoing neo-adjuvant chemo EC + pembrolizumab 4x 3 weekly, followed by pacitaxel and Carboplatinum 12x weekly, + pembrolizumab 3 weekly. I have been fasting for the first round for 60h (36h before and 24h after) without any ill effects, but I have been fasting more or less regularly for a long time before, so I knew it wasn’t going to be a problem. But while it is still a little ways off, I am also wondering what I should do for the weekly treatments… there have been a number of new publications published in late 2023 and early 2024, but still most on the longer interval treatments, not the weekly…
Did anyone drink ice water during the chemo to preserve their tastebuds? I did and can’t say my taste has changed, tbh. Although I really needed a bit of OJ in my water in the first week, or I “forgot” to drink enough.
Strawberrytart, I so hope you feel better now, I was in the same boat about 4 days after chemo day, until roughly 7 or 8 days later, and really didn’t know how I would be able to get through this. Fortunately it is a cyclical thing for your body, too. But I was ready to call it quits during those days, I had a lot of heartburn, back pain and borderline fever, I felt so weak and cold most of the time. But fortunately it did get better and I am almost 100% again (just in time to start round 2…). You are such a trooper, doing this all alone, without any help🥺
Looking forward to being here and maybe being able to get and provide help when needed.
Hi Caitlinn, like you I’m also tnbc, a bit older at 61, I used fasting for weight loss before cancer hit, so I’m used to it. I’m on the weekly paclitaxel ATM, just had week 6, so half way through. I’m on EC after.
I’ve found that fasting on my treatment day (my treatment is mid afternoon), then the next day drinking at least 3 pints of water, followed by light snacks day 3, then normal eating days 4-7 works well for me. Completely gets rid of any nausea (I had really horrible nausea during my first couple of weeks until I worked this out). I’ve given up on hot drinks and fruit juices as they make the dryness in my mouth worse so I’m only drinking water or milk. My taste buds are ok so far.
Hope your treatment is going well x
Nice to see at least our cancer thinks we are still young, right?
Your fasting approach seems very sensible. I am breaking fasting like you, but I drink around 2l every day anyway. And I couldn’t drink any hot drinks either, only started again this week, so 2 weeks downtime. Fortunately I have no nausea on EC, but Paci may probably be different (as well for every person). Did you have surgery already?
Caithlinn
I certainly felt young before chemo .
I’ve not had surgery yet, that comes after, advised that chemo first was best option. I’ve got an appointment in a couple of weeks to check progress and shrinkage. I’m hopeful the chemo is working so far as my lump feels smaller. Really pleased you haven’t had nausea with EC, is it every 3 weeks for you?
Yes, every 3 weeks due to the immunoinhibitor, without it I would have had it every 2 weeks. My tumor is actually already gone… I will have an ultrasound next Wednesday to see.
Hi Alex2,
I’m glad the EC is over.
Starting Pacitaxel next week.
I was told it tends to be easier.
I’m looking forward to getting my taste buds back especially as I’m a foodie! I normally enjoy my food !
Let’s see how it goes.
Have you been through EC ?
Hope your treatment goes well !
Hi Mari1,
I’ll be having the 3rd and last of the EC this Wednesday and then another 3 week break and moving onto Taxol. Just as I’m getting some normal taste back, I’ll be heading for another EC - so frustrating!
Good luck with the Taxol and let us know how you go with it. Have you invested in any compression gloves/socks or cold therapy socks/mittens (in the hope it will help the prevention of neuropathy)? I need to look into this before I head into the Taxol.
Good luck next week
X
Hi. I don’t want to get your hopes up as we all react differently. I had 3 EC, the 3rd being the hardest to get over. I had my 1st Docetaxel yesterday and there is very minimal nasty taste. I’m straight back to coffee and food tastes as it should, whereas I was just the same as you. I’m probably still a bit high on dexamethasone this time round.
I’ve been out taming the garden this morning.
Hang in there x
Be pleased that your getting in early x
There’s good evidence to say that chemo within 4 weeks of surgery gives better outcomes. I had to wait 8 weeks which nearly destroyed me.
I’ve done one cycle, cold capping but not hands and feet.
Good luck xxx
Hi Alex2,
I’m not planning to buy stuff for the hands and feet to avoid neuropathy.
I was told that my dose would be low as I’m having weekly appointments.
Hope this will make side effects easier to tolerate.
All these treatments are temporary and will end soon. So we can move on and get back to normality!
Thank goodness !!!
Best wishes Mari1
How are you all doing? I’ve just started cycle 2 on Monday with paclitaxol, carboplatin and the pembo. The nausea is unreal! Have switched medications this time for the nausea and not sure if it’s the change of tablets or starting the second cycle.
Anyway I’m struggling a bit. I’m finding it really hard to eat well with treatment and just wanting to eat sandwiches and crisps all the time. It’s so hard. I keep reading about people eating well and exercising and all I feel like doing is lying in bed watching Netflix and it’s making me feel so guilty lol I’m not giving my body the best chance. Sorry for the long message just hard to talk about this stuff with people.
Any advice is gratefully received. I’ve tried ginger and lemon tea and ginger biscuits for nausea
I’ve just started my third cycle, had paclitaxel and carbo yesterday. For me nausea has been one of the worst things. The only way I manage it is by not eating on the day of treatment but drinking loads of water. Next day very bland, very small snacks , eg. a baked potato, nothing on it again loads and loads of water. Then building up gradually on bland food until day 4 when I don’t have any nausea and can eat normally until the next treatment. Don’t feel guilty, I’ve had so many days in bed, and nights when I can’t sleep, going through netflix, don’t feel you have to push yourself. If my body needs to rest all day, I go with it. Usually by day 4 I’m fine for going out for walks, when it’s usually raining again!
Thank you so much. It helps to know I don’t feel alone. I’m having weekly paclitaxol which isn’t too bad but the three weekly one when I have all three is really brutal. Dreading having EC after this as they said this would be easier than EC. Good idea with things like jacket potatoes just think maybe I’m expecting too much too soon. Hope you are feeling better soon
This is true and what I keep telling myself! Some days are just so hard. The guilt of not being able to do what I normally do for week and my children breaks my heart. Hopefully this will just be an awful few months to ensure I can be here to watch them grow up. Are you having surgery after treatment?
Definitely, I see this as life on pause for 6 months, to have a life afterwards. But it’s the hardest thing I’ve ever gone through for sure, mentally and physically. Some days it’s overwhelming, but at least I’m tolerating the treatment, not everyone can. I get a progress check with my consultant next week and am hoping for good news as my lump feels much smaller. All being well, if the treatment stays the same, I’m having a lumpectomy and breast reduction after EC. Followed by radiotherapy. In it for the long haul. Then I’m going to go crazy travelling and having fun…
Meant to also say, as a mother you will always feel guilty regardless,it comes with territory, if they don’t understand now they will later.My children are grown up and independent and a great source of comfort to me. I wish the same future for you , cancer free having lots of fun with your family
This is true. My children are 1 and 6 it’s such a challenging time. I’m glad you have support. I am lucky I have family to help but it’s not the same. I haven’t been told what surgery I will have but my cancer is triple negative and it was large so not really sure what the best option will be. It’s all so scary isn’t it
It is so scary, but the treatments for tnbc are so much more effective now than they were a few years ago. Hopefully this chemo will rid your body of it. Take it a day at a time and hug your babies
Since I am on EC now, I am hoping for the reverse (i.e. easier under Paci). I have been told Paci/Carbo should have less side effects, but I don’t have any nausea with my EC. I do however feel a lot of pressure in my stomach, and I am burping to high heaven. Very annoying, I need to have a wedge pillow at night to elevate my upper body, but then I can’t sleep very well. I was recommended to take probiotics and I have to say, this has made a massive difference. I am doing a lot better this second time round, and the oncologist split my steroid dose in half, because I was so jittery. Plus no more port pain, and a better understanding in what I can or can’t do helps. Knowing the cycle is also helpful, I can prepare to feel rough for a few days, if I know I will improve again afterwards.
How long do you feel so rough under Paci then? If it is weekly, I hope no more than one or two days… I have 12 of those coming up and atm with 3 week cycles, I am feeling the chemo day most, then I have 2-3 days where I am ok, but going down, 2-3 days quite fatigued and then a steady increase again to almost normal for a fortnight. Then it starts again…
I really hope it isn’t like this under Paci… I only have 7 days there… don’t want to spend 3 or 4 of them feeling bad…
But I also feel like this is a 6 months (not very well planned or even wanted) holiday and my life is on hold. My tumor has shrunk over 50% already, but I have no idea whether there is going to be radition at the end or not. We’ll see. Surgery for sure, even of nothing is left, to retrieve the clips, but after that, no clue. Be well ladies! Xx
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, cancer free having lots of fun with your family