Have you heard yet about what treatment you will be on? Hope there is a plan in place for you now.
love Debs x
was just wondering if you were able to have treatment this week? Hope your bloods were better.
Live had 3 now so just going into my first week off. Other than extreme fatigue it’s been so far so good. Hair started to thin quite a bit this week but got wig in standby.
Ive been given filgrastim injections to give myself at home in my tummy for 3 days after chemo. This boosts the numbers. Worth asking about them to see if they will prescribe them for you.
Hi Daisy, Try not to be too disheartened, it happens.
I should have been speaking to consultant today, about my treatment going forward but it has been delayed until next week. I’m am glad to have another treatment free week as really struggling with SEs… fatigue and sore hands and feet.
Hope you are keeping well. I was booked in for my second paclitaxel today but it's delayed due to low white blood count. I'm gutted!! They have rescheduled for Tuesday next week. Mine were 1.1 but told they need to be around 1.5.
I'm really stressed now as it's another 5 days with no treatment.
How is everyone else doing?
My Oncologist gave me the choice of every week for 18 weeks or still 18 cycles but with a week off every 3 weeks. I opted for the week off to maybe give my body a break but will see how it goes.
Im drinking like a fish too but sadly not my favourite wine 😁
Good luck with the wig mines on order as they only had it in a much lighter colour however might have that one for summer. I might have courage to experiment with different colours and styles after a while but for now needed one that still looked like me.
Hi Daisy, initially I had Paclitaxel booked in weekly, although as time went on I ended up missing a few due to low neutrophils. However after the first 3 months I was switched to 3 weeks on and a week off. So that’s s pretty normal.
Looks as though I am changing treatment now due to side effects plus although the chemo has reduced some of my liver lesions, unfortunately some have increased in size. I am seeing consultant on Thursday so will know more then.
Glad yo hear everyone is doing well after treatment this week. I have felt good today, been drinking lots and lots of water to keep hydrated as nurse said that helps.
I'm on weekly paclitaxel but I have noticed some of you are weekly on for 3 weeks then off for one week. Is this the norm? Should I expect a week off on the 4th week?? No one has mentioned it.
I have someone coming on Monday to try some wigs on. Fingers crossed I find something!!
I had the steroid but it didn't seem to affect my sleep. I slept well, mind you we are all different.
Enjoy the weekend everyone, good luck for next weeks treatment.
Hi Debs, if you are on steroids they will be why you are waking up. I had steroids for my first 3 treatments but then stopped after that and slept much better.
You are one ahead of me. I’m having my hair cut shorter too as will help with the wig fitting as not sure if it will all be gone at once or be a shedding? Seems to vary with everybody. Glad side effects ok after 2nd dose. I’m on weekly for 3 weeks then a week off.
Are you sleeping ok? I’m waking every couple of hours then can’t drop off, makes the nights very long but hey ho that’s a minimal complaint.
Hope this works well for us
im new to this feed and love reading your great comments and experiences.
I am on a weekly regime had my second paclitaxol yesterday and don’t feel too bad today. Last week I had muscle aches for a couple of days but no nausea thank goodness.
my hair is good so far and is probably my biggest fear to lose that but seeing my hairdresser next week to get it cut short if it’s still there!
I hope my veins hold out as a weekly attack on them sounds a bit brutal.
love and hugs to you all
Had mine yesterday so far so good today. I feel like a ticking time bomb waiting for side effects to occur. I admire you for fasting, I on the other hand raided the sandwich trolley when it came around.
Im on a 3 week schedule then a week off are you?
Hope it’s kind to us and ultimately works. My oncologist also said he would be happy to put me on a hormonal if this stabilises me after 18 rounds.
love Debs x
Hope everyone is keeping ok?
I had my first session of Paclitaxel this morning. I decided to do a fast 24 hours before and also 24 hours on the day of chemo. I am looking forward to eating tomorrow!!! I have read some good comments and research about fasting so thought I would give it a go. I have just had lots of green tea and water today.
I didn't bother with the cold cap either as I don't like being cold anyway and I thought it might be uncomfortable. Plus I don't want to be in the unit any longer than I have to.
I feel ok this afternoon , but obviously I don't know how the next few days will be, I will keep you posted. I had a nice long bath when I got home as my mum has the kids for tea.
I have decided to try icing my fingers and feet at the next session just to see if it holds off the tingling side effect that I have been told about. I have found some good ice gel socks on amazon so going to give them a go next week.
Gillyflower - sorry to hear you are no longer having paclitaxel. I hope you do well on your new drug.
My oncologist did say that if my liver stabilises then he will have no hesitation to put me back on the hormonal drugs, maybe fulvestrant.
He did also talk about a new drug that is coming onto the nhs wales in July this year but the drug is only for people who have the PIK3 mutation. he said about 40% of breast cancers have this mutation so once the drug is approved he will send my tissue for biopsy. Obviously if I do not have the mutation the drug will not be available to me.
Take care ladies.
oh that’s a bugger especially if hospital knew your bloods were not going in the right direction. My white count will potentially be low because I’m on an anti seizure med one of the side effects being to lower your blood count !!! So for 3 days after chemo I’ve got to inject myself with Filgrastim which boosts the blood count up. Has this been mentioned to you?
On the plus side Exemestane kept my bone mets stable for 3 years when they were first found.
All went according to plan. Home now waiting for any side effects to manifest. Yes the portion went in and then the Dex my poor body probably doesn’t know if it should sleep 😴 or party 🥳 lol.
will update you
Hi lovely Paclitaxel buddies,
Thanks for all your well wishes, unfortunately I've fallen off the Pax team as my bloods haven't been right for weeks, so Pax keeps getting delayed. I've just had a call with the Oncologist and they now suspect that my mets have infiltrated my bone marrow, which means my body can't produce enough hemaglobin and platelets by itself. This then means I can't have chemo! I am beyond frustrated. What has made it all worse is the fact that the chemo unit have known for months that my bloods have been dropping and told me about it, but haven't bothered to raise the concerns to the Oncologist.....why am I not surprised.
So anyway, it looks like I'll be going on Exemestane, to see if that will knock the mets back a bit and restore some of my bone marrow function. With a bit of luck, if it works I can then move onto Pax. However, I'll still pop in and see how you're all doing as I would still like to hear your experiences!
Hope you're all doing ok on it, sending much love xxx
Hope your first one went ok Debs. You’ll sleep better tonight, after the piriton but the steroids will also kick in, which can make you very alert. I only had steroids for the 1st three chemos and each week was at a slightly reduced dose.
I haven’t bothered with a wig, I just wear hats. Although my niece is getting married at the beginning of May, so might opt for one for the wedding.
well it’s 5.30am can’t sleep as I’ve got my first paclitaxel 9.15am. I believe you had yours yesterday? Hope all went well and you are sleeping like a baby right now.
Yes I've also heard the same thing Debs, ie. if the Paclitaxel does a good job, you can go back to gentler treatments if you want.
I will be thinking of you all next week - mine is scheduled for Tuesday afternoon.
I need to go and get a wig, something for my to-do list next week. I didn't like wearing a wig last time I had one, but I think its cos I chose a rubbish style and it didn't feel like a tight fit so was constantly sliding around on my head. I know better what to look for this time!
Loved your last message Debs - we certainly can do this! Good luck to you all from me as well, lots of love 🤗 xxx
Thanks so much for the info and yes will be great for us all to buddy up and help each other. I will ask about the port when I have the chemo talk on Monday. Been on a wig hunt today and after a little meltdown found one I liked which is being ordered to match my hair colour.
My oncologist has also confirmed that if this stabilises things it should be possible to go to a gentler med after. My regime will be once a week then a week off . I start next Wednesday.
Good luck Gals we can do this
Love Debs xxx
I was on weekly paclitaxel for the 1st 3 months, although struggled to keep to that. I am now scheduled for 3 weeks on and week off. Again have not kept to it for various reasons ranging from low neutrophils to a break away. I have learnt to listen to my body & remember to keep in mind quality of life is very important.
The nausea has not been issue at all for me, as I said I have only taken a total of 4 tablets since August. I was given metoclopramide hydrochloride tabs, at Christie's all patients are given these and loperamide hydrochloride, as a precaution for sickness & diarrhoea. I haven't had any issues with diarrhoea.
I have a port. My veins are very narrow & so they have always struggled to get blood let alone a cannula in. It is a godsend for me.
My hair started to come out gradually and took about 4-5 weeks to go. Although still have a few stragglers.
Good luck Monday. Ask anything you want but remember everyone reacts differently.
Hi Jayne, Debs and Daisy,
I am also due to start Paclitaxel next week due to the fact that Capecitabine has stopped working and I've had some progression into my lungs now. Its always so scary when a treatment change happens and the prospect of going back on IV chemo is pretty upsetting but hey - ho, we muster our courage and soldier on!
Happy to buddy up with you all and share experiences, tips and any bright ideas for combatting any side effects! I haven't tried cold capping either, however it was offered to me but I am told it extends the treatment time by like an hour or something, and given I am on a weekly Pax schedule, I can't be bothered with it!
Interestingly, I've been told I'm on a weekly Paclitaxel schedule, which I've never heard of. Has anyone else been told they'll be on it weekly? I've heard a few anecdotal stories that a lot of people get good results from Paclitaxel so keeping fingers crossed it does a good job for us all xxx
Debs - I have just had a portacath fitted and it is the best thing I've ever done. I had mine under general anesthetic and there was no pain upon waking, just some itching, tightness and discomfort initially but nothing that paracetamol couldn't sort out. I've just used it to have bloods done and had a blood transfusion through it yesterday and it was amazing, I don't even know its there and its so much easier for the nurses too. Would highly recommend one - plus the bonus is you can still shower, swim etc. whereas with a PICC or Hickman Line, you can't.
Thanks for the reply. I have a few questions, hope you don’t mind.
What do they give you for nausea and is the nausea bad?
do you have a port or pick line or have it in a regular vein?
hair... I’m not cold capping... does it come out gradually or in one go?
Iv e got the “ chemo” talk Monday but like first hand knowledge best.
so pleased it has stabilised you
love Debs x
I was so sorry to read you have been in hospital for 10 days, that must have been awful for you. I have not been physically sick on Paclitaxel, I have felt a bit nauseous a couple of times but once taken an anti sickness tablet I have been fine. You will be given anti sickness tablets after your treatment in case you need them. I have only used about 4 tablets since August.
Sending positive vibes
Hi Debs and Daisy,
I have been on Paclitaxel since the end of August. Initially every week but since December I have been on 3 weekly and a week off. Unfortunately I have had a few unscheduled breaks due to low neutrophils or because I haven’t felt well enough. Everyone is different and as such react differently, some people have little or no side effects whilst others have more. My main issues have been lack of energy and my hands & too a lesser extent feet have been quite sore. I have also lost all my hair but didn’t do the cold cap. It wasn’t for me, as tried it first time around and found it awful. A personal choice as lots of ladies use it. However most importantly at my last scan things looked more stable. I had been on both Capecilabine & fulvestrant prior to Paclitaxel and unfortunately my liver lesions had continued to grow.
The best advice I can give is to remember quality of life is important and it is your life. I have learnt over the last few months when I really need to take a break for a week, based on how I am feeling and have had one.
I have my 3 monthly scan on Friday and then a review mid Feb, so will have to see how things are going.
I wish you all the very best ladies.
I have just been told I have progression in the liver.
I have been on ribociclib for about 10 cycles but its now stopped working.
I'm due to start paclitaxel ASAP. I have never had chemo so have no idea what to expect?
Any advice, tips?
Im about to join you on this drug. Capecitabine didn’t work and I ended up having a seizure on 2nd Jan.. In hospital 10 days. Very nervous to go on chemo very scared of being sick with no quality of life. Still on we go let’s hope it stabilises me. It will be 3 weeks on and one week off. Do you guys have a pic line or just have it in a vein in your arm?
Good luck with your scan results.
I have my scan on 9 November.
my energy levels are at rock bottom. I am a very active person so really struggling with the fact I can do almost nothing at all. I am so lucky to have my OH home and he has been amazing.
sending positive vibes x
Hi, I’ve just finished my first 3 cycles, and waiting for first scan results.
i had significant progression in liver whilst on a phase 1 trial, where one lesion grew to 8cm! So I’m hoping Pax has shrunk that a bit.
how are you doing?
I am starting Paclitaxel on Tuesday, in a bid to get some control over the secondaries in my liver. I have tried fulvestrant and Capecilabine both without success, unfortunately whilst on these treatments the cancer continued to grow in my liver.
Is anyone about to start or recently started this treatment and happy to buddy up with me?
Thank you xx