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Paclitaxel buddies

Bee3
Member

Re: Paclitaxel buddies

Hi Everyone,

Love the socks! Hope they help you all. 😊

Well I saw my consultant on Friday and it was not good news for me so I shall no longer be a Paclitaxel Buddy.  The tumours in my lymph nodes were reduced and remain stable in my spine, but my liver tumours grew. 

My consultant said that he was shocked because my blood results were really good and my tumour markers were reducing week by week. He is putting me forward for a trial at the Royal Marsden, so I hope I can get on it despite the lockdown. I am worried as if the chemo hasn't been working for a few months for my liver and I can't start the trial until the lockdown ends then should I start other treatment soon?  If I am not eligible for the trial I will move onto the 3 Es!

Please don't take my results as an indication of your results, as every treatment I have had has not worked, or only for a short time. I think it is just me. 

I am having a liver biopsy on Wednesday. Wish me luck!

All the best to you.

Love Bee x

Jennie60
Member

Re: Paclitaxel buddies

Thanks once again  Alwayshope. More good tips to follow.  I will let you know how I get on. All the best to you and all on here. Take care. Stay safe xx

Alwayshope08
Member

Re: Paclitaxel buddies

Hi Jennie,

I took ice blocks last week (before my socks arrived) and had some under my feet and some over my feet wrapped in a towel.  They kept ok in the freezer bag I took them in.


Regarding the socks.... put the actual full sock (with gel inserts in) into the freezer for 2 hours. I’ll have to get up early to put them in the freezer on Wednesday because my appointment is at 9am! 😂 The socks do come with instructions, so have a good read.

I am going to place the freezer blocks over them in the freezer bag on Wednesday, so they should be more than cool enough. The things you do hey!

Let me know what you think of the socks when you use them. I hope they help you. Take care xxx

Jennie60
Member

Re: Paclitaxel buddies

Alwayshope,  thanks for the tips on the socks. Should have mine on Wednesday so can try them at home before treatment the following Monday. 

I suppose I need to freeze the packs and put them in a freeze bag to keep them frozen before treatment. I travel about 45 min to hospital but it should work. Can only try. 

Love Jen x

 

Alwayshope08
Member

Re: Paclitaxel buddies

Hi Jennie and Angel Eyes,

Gorgeous looking socks aren’t they 😂 when you read up about peripheral neuropathy it states about keeping your feet/hands warm! However, it does also say that cooling the very same feet and hands during chemo may help your neuropathy symptoms. I am no medical professional, so I think it’s about finding what is right for you. (I worry about making symptoms worse for anyone!)

In the meantime, I think I am going to try keeping my feet warm (when not having treatment) and I’ll use them during treatment. It’s trial and error isn’t it, but they are very soothing on my feet 😊 I’ve got my bag ready for my socks and ice packs to go in. I’ll look like I am going on holiday when I go to hospital next week! Wish I was!

Let me know how you get on with the socks Jennie. Don’t walk in them because they can be slippy!

Sending love and positive thoughts to you ladies. Have a relaxing weekend xxx

Jennie60
Member

Re: Paclitaxel buddies

Alwayshope, just ordered the socks, let's hope they work for us both. As you said worth a try xx

Jennie60
Member

Re: Paclitaxel buddies

Thanks Alwayshope, they look gorgeous. 🤣 joking aside if they do the job that's brilliant. I may have to get some. I'm still wearing the cold cap every week too. All I will need soon is an igloo.

Thanks for sharing. Take care. Have a good weekend all 🥰xx

 

Angel Eyes
Member

Re: Paclitaxel buddies

Hi Alwayshope, 

Love the socks... 🤗

They look sooo sweet! Thanks for sharing the tip.

 

Angel Eyes x

Alwayshope08
Member

Re: Paclitaxel buddies

063D1202-EA7C-4D00-B3CB-8D50F84305B8.jpeg

 Jennie,

These are the socks. £19.99 on Amazon. Dare I say so soon that they’re helping? I am taking them with me to treatment next week and I wear them for 30 minutes at a time in the house too. Definitely worth a go. Have a lovely weekend everyone and take care. Love to all ❤️xxx

amyc
Member

Re: Paclitaxel buddies

Thanks everyone, yes I will definitely keep in touch. I am feeling quite good about things at the moment, just need this surgery to go well and I think I’ll feel like I’m in a much better position overall. 

I am distracting myself with lots of Halloween plans this weekend. I bought five pumpkins today for us to carve 🎃🎃🎃🎃🎃

Jennie60
Member

Re: Paclitaxel buddies

Hi Amy, good to hear you have a plan in place. Hope you have a wonderful view after surgery and it all goes well for you. As Bee said keep in touch, it would be lovely to hear from you. Lots of love 💕

Alwayshope and Bee I've been thinking  about you both and hoping you have amazing results. 🙏🙏

I've been experiencing a new side effect of tight swollen feet, numb toes and fingers. I've read about ice helping, as you have said Alwayshope, I've looked at the ice socks too. My oncologist said if its not stopping me from getting on day to day I should be ok. I'm scared of it getting worse though. I've read magnesium could help. I think I will ask on Monday in clinic and see what they think.

Have a good weekend all. It's a year on Halloween since my SB diagnosis. Remembering that day is certainly scary and one Halloween to forget.

This year I'm making memories with my 3yr old grandaughter. Have a good one 🥰xx

Bee3
Member

Re: Paclitaxel buddies

Hi Amy,

Sorry to hear that paclitaxel hasn't had the positive results you hoped for but I am pleased that it did some good. At least your weeks won't be dominated by weekly appointments as you will be taking carboplatin every 3 weeks.😊

I am sorry to hear that you are getting pain in the breast. No wonder you can't wait for your operation. Wishing you all the best with it and hope it gets rid of anything bad! Hope you end up with a beautiful view. You can imagine that you are in a very expensive hotel!

I hope you will still keep in contact with us all here, even if only occasionally, as I would love to hear how you are.

Sending love and hugs your way.

Bee xx

Alwayshope08
Member

Re: Paclitaxel buddies

Hi Bee,

How are you doing? I’ve just had treatment number 9 of Paclitaxel. I wrapped my feet in ice blocks (carried in a freezer bag) and I am waiting for a pair of ice slippers for next week. You just put the gel inserts in the freezer and then pop them in the slippers. I’ve ordered them from Amazon. I’ve had to try something, as my left foot has been painful (probably due to existing damage to my sciatic nerve).

Have you had a date for your CT results yet? Not sure when I am seeing my Consultant yet. I’ve been keeping busy anyway and it is half term this week, so spending time with our Daughter, which is lovely 😊 

Wishing you and all others on here positive thoughts and results ❤️take care everyone and have a relaxing Halloween 🎃 weekend xxx

Alwayshope08
Member

Re: Paclitaxel buddies

Hi Amy,

I am really pleased that you have a clear plan now and are booked in for your surgery. I am glad you had some response to the drug, because I always think that some response is better than no response.

I wish you well for next week and hope you get a decent view from your window 😊 In the meantime, have a relaxing weekend doing things you enjoy. Sending positive thoughts and best wishes to you xxx

amyc
Member

Re: Paclitaxel buddies

Hi everyone 

Hope that those waiting on results are not feeling too anxious, or at least that you’re able to distract yourselves to a certain extent! 

It looks like I am finished with paclitaxel... I made it to 13 sessions in the end. My surgery is booked in for next week and because I only had a partially good response to the drug, my dr thinks it best to move on to three-weekly carboplatin, probably in January. It will be confirmed once the pathology results are in after the op. 

I am getting a bit of pain in the breast now where it hasn’t really responded to treatment so can’t wait to have the surgery. Keep imagining all sorts of crazy things that might happen to get in the way of it. I will be at St Thomas’, so might end up in a ward with a view of the Thames and the Houses of Parliament 😁

Sending good vibes all round xxx 

Bee3
Member

Re: Paclitaxel buddies

Hi Alwayshope and Jen,

Thank you for your good wishes and hope for positive results. I hope you have positive results too Alwayshope and anyone waiting for scan results.

I am finding paclitaxel the best treatment I have had in terms of side effects, although I am not pleased to be bald! I really hope it is working as I want to stay on it for as long as possible. Hope for everyone the side effects are not too bad.

My CT scan appointment was at 3.20pm and I was out after 50 minutes. I am lucky in that the staff are always so welcoming and pleasant. It makes such a difference. 

Hope you are all having a lovely weekend. 

Take care. 

x Bee

Alwayshope08
Member

Re: Paclitaxel buddies

Hi Jennie and Bee,

Thanks for your positive vibes Jennie. Hoping the results are decent and I don’t have to wait too long.

Hope your results are positive Bee and you don’t have to wait too long for yours. 

The CT department was really busy this morning, but they were lovely as ever. The Radiologist said you can leave the needle in the port for a few days, so I think it must depend which hospital you go to! I have my bloods taken from a different hospital nearer home and they told me they don’t leave them in now! I don’t leave mine in anyway, so no decision to make re that.

I hope you all have a relaxing weekend and the side effects are kind to you. Take care everyone xxx

Jennie60
Member

Re: Paclitaxel buddies

Hi Alwayshope and Bee

Just wanted to send you positive vibes for your CT scans. Hope you don't have to wait too long for results and that results are all good. 

Take care. 💕 xx

Bee3
Member

Re: Paclitaxel buddies

Hi Alwayshope,

Hope you have had a good day. Glad you are feeling much more positive about the timing of your scan. 

Isn't it strange that your nurse told you they don't leave the needle in the port now. The iv nurse who put in the needle fine yesterday told me that they can be left in for up to 7 days. They used this same needle for my chemo today. (My appointment was 9.00 and I was out by 11.20 which was the quickest yet. Meant my ice cubes in my plastic bag were still cubes for the whole paclitaxel session!) I have it in for the CT scan tomorrow. However I think from next week I will get them to take the needle out each time. As you say the numbing cream does work a treat. I wonder if your hospital has the most up to date advice and mine hasn't got it yet!

Wishing everyone a good sleep and a relaxing day tomorrow. Hope mine will be but my son is taking me to my CT appointment and is going to walk to me from his work. He estimates it will take him 40 mins to walk to me but I think it will be more like 60. 🤣🙄

Wishing you all the best and love, x Bee

Alwayshope08
Member

Re: Paclitaxel buddies

Hi Bee,

You’re right, the flip side is I may find out earlier that it is having a positive effect. I am usually a positive person, but this has thrown me into a tailspin for some reason. I now notice every little twinge and think is that the treatment or something else! My last scan was at the end of July, so thinking about it, my 3 monthly scan is due now.

The other thing like you say, is the Covid situation. I had to wait 6 months between scans last time, so they are probably getting me in while they can! I’ll be glad when the CT scan is done and I have my results. I’ll know what’s what then!

When I had my bloods taken yesterday the Nurse said they don’t leave the needle in the port now. This is a new thing, but I’ve never left mine in anyway. I usually put my numbing cream on about 2 hours before it’s accessed and that seems to do the trick.

I think it’s handy to have a wig to hand and I think I will wear mine at some point when my Daughter is looking the other way! Yours sounds very stylish. I might pair mine with a hat too.

Wishing you and all on here positive results on Paclitaxel. Take care everyone xxx

Bee3
Member

Re: Paclitaxel buddies

Hi Alwayshope,

Sorry to hear that your earlier than expected scan has thrown you. We are on a similar number of paclitaxels and my scan is a week after yours. I am also a bit concerned that because we're not even at the halfway point with our paclitaxel treatment the results might not be as good as we hope for. However if they show the tumours are reducing, then at least we can be confident, earlier, that the chemo is working well. Do you think they want to get scans booked in in case capacity is reduced with the increasing number of covid patients? I think scan time is an anxious time but from what others have shared I am expecting good results. That's even though I have never had three weeks of chemo consecutively. I know it is impossible to help feeling how you do but hopefully you are feeling a bit more positive about it now. 

Thanks for your helpful response to my stress with the needles. I think it might be worth me getting the needle taken out after the bloods as I get so stressed about it being left in. I do have the numbing cream but still feel it a bit. 

I found a wig that is slightly longer than my usual hair and so I can tie it up. It is nice but I haven't worn it out yet although the woman in the shop did ask if I wanted to wear it home! I couldn't wait to get it off then. I did buy a rather nice hat at the same time which is a bit like two hats as you put the hat on and then have these bits of material to put around the hat. I have made it sound terrible but it is rather lovely as every time it looks different.

Your daughter sounds like a real sweetheart. What a lovely thing to say to you. 😊 I bought mine mainly to wear at Christmas too, well for any photos, as I don't want my bald head a permanent memory.

Hope everyone is doing well this week and that the paclitaxel is doing its thing!

Love Bee xx

Alwayshope08
Member

Re: Paclitaxel buddies

Hi Jennie,

I know you and everyone on here can relate to “scanxiety”. You’re right, I need to keep myself as busy as I can. I am working from home, so that will distract me and there are plenty of household chores which need doing!

I hope treatment 12 is kind to you and your side effects are not too bad. I just need to try to park the scan for now, but it is that dread that gets to me. I am plodding on with the treatment, but I know I need to know how/if the Paclitaxel is working, so I need to get it out of the way. 
Hope everyone is doing ok. Take care. Sending lots of positivity to all of you xxx

Jennie60
Member

Re: Paclitaxel buddies

Hi Alwayshope 

Just got back from treatment no.12 and read your post. I know that feeling too well now too. Dread and fear creep in immediately after you hear you have a scan. It's uncontrollable!

Mine was a bit early after 10 treatments and I was terrified of bad results, as things had grown a little on the last one, but all was good. I'm hoping for the same or better for you. Get it done and dusted. I know that's easy to say, we all hate scans and results. 

"Come on Paclitaxel do your thing!"

Lots of love. Take care. Keep busy, my house is so clean before a scan! Xx

Alwayshope08
Member

Re: Paclitaxel buddies

Hi everyone,

I have just had a call to say I’ve got a CT scan this Friday. I’d geared myself up for one in about 4 weeks time, so this has thrown me a bit. I’ve had 7/24 treatments so far, with number 8 this Wednesday. When I seen my Consultant last week, she said she’d arrange one for about 4 weeks time, so I queried it with the Radiologist during the call. She said it has been requested for before 28th October, but said they sometimes request them at the beginning, middle and end of the treatment. It’s amazing how one phone call can throw you completely. I am worrying that it’s not long enough for it to have had any meaningful impact yet.

Hope you are all tolerating treatment well. Take care everyone xxx

Alwayshope08
Member

Re: Paclitaxel buddies

Hi Bee,

I don’t have the needle left in the day before when I have bloods taken, I just find it easier to have it disconnected each time. I wasn’t sure how I would feel sleeping on it, but I am sure you could just sleep on your other side. If you don’t like the needle going in you could always use some numbing cream and put it on about 2 hours before. That way, you don’t have to leave it in.
I hope you’ve found a nice wig. My hair has thinned out considerably, but because it hasn’t been coming out in clumps this time, I haven’t shaved it yet. I wear either a baseball cap or a woolly hat, now it’s getting cooler out. I chose a wig, but our 9 year old Daughter told me she preferred me without it. I only bought it because I thought she’d want me to wear one. It’s there if I need it though, which I may do at Christmas.

Hope the treatment is being kind to you and your CT scan goes well. Take care everyone xxx

Bee3
Member

Re: Paclitaxel buddies

Hi Alwayshope,

I had my paclitaxel yesterday too and wondered why I was wide awake at 3 am. I always think I am going to sleep so well after chemo and it never happens! 😂

I brought some ice cubes with me to suck on while I was having the chemo. I must buy a little flask for them as they were quite melted. Does anyone with a portacath have blood taken the day before chemo and the needle left in so that it can be used by the chemo nurses the next day? If so do you have any tips for making sure it won't get dislodged. I am assured that it won't but find it stressful and as I have my CT scan next Friday I shall have it in two nights. How will I cope?

I am off to the wig shop soon. Must remember to buy a hat to put by the front door. I keep shocking people delivering post and parcels. I am tempted to go for a wig completely different to my normal style and colour. I know that it will have to be worn over the Christmas period so not sure that I should be too different but ....... 

Wishing you all the best.

xx Bee

Alwayshope08
Member

Re: Paclitaxel buddies

Hi Amy,

Hoping you get that CT scan booked in for next week and then you’ll know where you are. You’ll have the next stage of your plan then and can plough on.

I had 7/24 of Paclitaxel yesterday, hence why I am wide awake at 5am! Let us all know how you get on and take care everyone xxx

Jennie60
Member

Re: Paclitaxel buddies

Hi Amyc

We are quite close in treatments 12 next for me. Hope your scans go well and you have a confirmed plan about surgery. I can't have surgery.

I spoke to the BC nurse this morning and she confirmed I have paclitaxol until December every week if I can tolerate it. Then a scan in January. 

I don't  know about you but it feels like a rollercoaster some days and others a merry go round, but stopping and getting off either is not recommended! 

Keep going Amyc and all Paclitaxel buddies. Long may it do its thing!

Xx

 

 

amyc
Member

Re: Paclitaxel buddies

This is such good news Jennie! 

I’m in for treatment 13 tomorrow, still waiting for my surgery date to be confirmed and feeling pretty anxious about it. I just want to get it done now. I have to have a couple of scans before they will confirm it, the first one is an MRI on Saturday. Then a CT some time the following week, I think. 

Jennie60
Member

Re: Paclitaxel buddies

Hi Bee and Alwayshope,

Yes it's fantastic news. My husband stayed home from work to be with me when I got the call, we waited ages after the appointment time. It was a member of oncology team, not one I'd met before and he sounded so sombre it scared the life out of us. When he said significant reduction I repeated it back to him to check!

He wasn't sure about next steps. He checked and said paclitaxel had been prescribed until December. I'm going to check this in clinic on Monday. I'm happy to continue, I've coped well so far and it's working so no arguement from me. 

Ladies I am keeping everything crossed that Paclitaxel does its thing for you too. I'm still coming down to earth that it's worked for me. Results time is total agony. We were exhausted last night. 

Stay safe, keep enjoying good food and family time. Love Jen x

Alwayshope08
Member

Re: Paclitaxel buddies

Hi Bee,

Just read Jen’s post and what brilliant news that is 😊 delighted for her.

I will ask about my tumour markers, but it’s just not something they’ve ever mentioned to me. Must just be going by the CT scans. I am just curious to know what they are.

I’ve had 6 treatments each week so far, but I know if my bloods are not at the proper levels, I’d miss a week here and there too. The main thing is that your treatment has plodded along with no significant breaks in between (I mean 1 month +), so this should hopefully mean it’s zapping those nuggets, which I am sure it is!

I can’t stop eating at the moment and I love Pizza Express 😋 I filled my boots/stomach at Pizza Hut! I need to exercise more, as eating more and exercising less is going to mean I put weight on. Food is my go to at the moment though. Think I am comfort eating! Have a nice relaxing weekend everyone and look after yourselves xxx

Alwayshope08
Member

Re: Paclitaxel buddies

Hi Jen,

I am so so happy for you 😊 What brilliant news that the Paclitaxel is doing it’s job. Enjoy your weekend, as I am sure you will and thank you for sharing this fantastic news. Take care xxx

Bee3
Member

Re: Paclitaxel buddies

Hi Alwayshope,

Amy, I feel for you but hope you enjoyed your book and as you say you can get away earlier. Hope you have a lovely weekend. 

It's great news from Jen. It should be our chant: 'Come on Paclitaxel, do your thing!'

Regarding tumour markers, my consultant has only mentioned them from January but I knew others had theirs reported. I was aware that they can be a bit unpredictable. However my consultant has added them to my blood tests and he knew that they were going up while I was on capecitabine which is why he brought my CT scan forward. They are an indicator but the scan is the most important thing. Mine are 600 and something when I started paclitaxel but he said it was encouraging that they had moved to 400 and something when he last spoke to me. (I do ask the nurses what the tumour markers are now when I have my blood tests. Some will tell me but others say that the consultant needs to report them to me.) I would ask your consultant about them as it gives them another piece in the jigsaw. 

I am getting a bit worried as my paclitaxel hasn't been straightforward as I had one lot of chemo then a week off, then another lot, then a week off, then two weeks one after another , then a week off, then one lot and a week off. I start the next set next week and really hope I can get a straight three weeks of chemo and then a week off as I have never had the proper schedule yet. I think it will make a difference to my results. Has anyone else had such disjointed treatment?

My daughter and I had a lovely time looking around the shops and then eating far too much at Pizza Express. It was so nice although  some things taste really sweet when they never used to. Glad you enjoyed your vegan full English and your Pizza Hut. We used to always go to Pizza Hut for my son's birthday as he loved it and so did I. Still do, although ours has closed now in Brighton. 

Wishing you all happy and relaxing weekends while all tumours are being blasted with super paclitaxel. 

xx Bee

Bee3
Member

Re: Paclitaxel buddies

Hi Jen,

I am so pleased and delighted to hear your fab news. I bet you are still on Cloud 9.  

Thanks for letting us know and for giving us hope. It is good to hear that paclitaxel is working well.

Hope you have a lovely weekend.

xx Bee

Jennie60
Member

Re: Paclitaxel buddies

Hi ladies, 

Today I had my ct scan results after 10 treatments of 12.

I'm so happy to share there is significant reduction in my liver and lung. The one in my bone has healed. Phew we waited patiently for a call at home for over 2 hrs. But this was worth the wait. 

I'm not exactly sure but I think the plan is to have another 2 cycles after this as it's worked. Fine by me. 

Hope you are all well. Have a lovely weekend. Jen x💕

 

Alwayshope08
Member

Re: Paclitaxel buddies

Hi Amy,

What a pain, but if you’re going away this weekend and it means you can get away earlier, then maybe that is actually better for you this week. Have a great relaxing weekend.

Keep us all informed of how next week goes, but for now, enjoy yourself and take care xxx

 

Alwayshope08
Member

Re: Paclitaxel buddies

Hi Bee,

It’s reassuring to read about ladies who are here and doing well after so many years. It’s what we need to read. I am always hopeful that there are more treatments coming out too, which hopefully will serve us well.

Good luck on with your scan on 23rd Bee. Come on Paclitaxel, do your thing! They never mention tumour markers to me. Is that something you have to request from them? I see my Consultant next week, so think I will ask her then.

Ooh I love Pizza Express 😋but then I love almost any food. I can’t stop eating at the moment! We went for a cheeky full English (vegan) breakfast on Monday morning and then we went to Pizza Hut on Tuesday night for my partners birthday. I didn’t come up or air! 😂 enjoy Pizza Express Bee and have a relaxing weekend xxx

amyc
Member

Re: Paclitaxel buddies

Bit of a frustrating appointment as a biopsy sample I had done last week got sent to the wrong lab. So my meeting with the surgeon that was meant to be tomorrow has been postponed until next week. It does mean we can get away for our weekend away a bit earlier but I would have liked to have the plan confirmed. Oh well. Am in the chemo unit now for treatment and am going to try and read my book and forget about it for now. 

 

Bee3
Member

Re: Paclitaxel buddies

Hi Helen,

Thanks for sharing your great news. So lovely to hear it as it gives me a lot of hope. Do you mind if I ask what treatment you are on now? 

On rereading your post I see it was you that suggested the flask with ice cubes. 😊

Wishing you a lovely day and another 8 years at least.

x Bee

Bee3
Member

Re: Paclitaxel buddies

Hi Amy,

Wishing you all the best for your appointment today.

Thinking of you.

xx Bee

Bee3
Member

Re: Paclitaxel buddies

Hi Helen and Alwayshope,

Isn't it great to have positive news. Living for 8 years gives me such a lot of hope. It is wonderful news. Good luck with your chemo today Alwayshope. Someone suggested a flask for ice cubes to suck so your tongue doesn't get sore. 

I had abebciclib and fulvestrant for a few months but they didn't work for me. Then I had capecitabine and when that stopped working I moved to paclitaxel. (Capecitabine was working on my liver mets but not my lymph node ones and spine.) 

I would say that you should be scanned every 12 weeks Alwayshope. You need to be sure that your treatment is working. I have my next scan on 23rd and really hope I shall have good results. Unfortunately I have never had the 3 weeks together because of having antibiotics and then low neuts. I wonder if this is why I feel so good on paclitaxel. I know my tumour markers have come down, which my consultant described as encouraging,  but to me they still seem high at over 400. 

I am living the highlife now after my day out on Saturday. I have booked lunch at Pizza Express on Friday as my daughter has an INSET day!🤣

Love and all the best to you all,

Bee x

Alwayshope08
Member

Re: Paclitaxel buddies

Hi Helen,

You are the lady I read about regarding the amount of Paclitaxel treatments! Thank you for responding. I am having 6/24 later today, so I will speak to the Nurses and see what they say about the cold caps and mitts.

It’s reassuring to know that you are now 8 years on living with bone and liver mets. I have a 2cm lesion in my liver and some lung nodules dotted about, as well as lymph node disease. I was on Abebciclib and Fulvestrant for 12 months, but progression meant it was time to start chemo! How effective was the Paclitaxel for you? I know we’re all different, but it obviously did something and I am hoping that’s what it does for me. My Nurse said I will probably have a scan after 12 treatments, but going to confirm this with my Consultant next week.

Thanks again for your input xxx

Alwayshope08
Member

Re: Paclitaxel buddies

Hi Amy, thanks for the tips re the ice gloves. I’ll take a look and see what I can find!

Good luck with your appointment today. I always feel more reassured when I know what treatment is next xx

Anniej
Community Champion

Re: Paclitaxel buddies

Hi Bee, what a journey you’ve had. I think you show tremendous resilience and optimism. This is a good time we are living in, that we can be offered so many different treatments, and I hope this one is a winner for you. I have lung mets, and so far 🤞 I’m on the bog standard Letrozole + Palbociclib. I’m sure someone will be along soon who can buddy up with you, but I just wanted to acknowledge your post and wish you all the best for your treatment. 🍀💐

helen44
Member

Re: Paclitaxel buddies

Hi ladies

Just reading your thread & thought I would just write about my paclitaxel experience of 28 weekly sessions a couple of years ago.

At my chemo ward the nurses wrapped a cold cap in a towel and I put thick socks on & rested my feet on the towel. They also had some gloves a bit like oven mitts which were cold. Doing this didn't stop the numbness but it definitely helped lessen it. I also suck ice cubes from a flask whilst having chemo - this helps reduce mouth sores. 

I have used these methods on docetaxel as well. Hope this might help & I hope paclitaxel does the trick for you all. I am coming up for 8 years with bone & liver mets. 

Helen xx

amyc
Member

Re: Paclitaxel buddies

I have not found the paclitaxel too bad at all really. Like you the weeks have varied a bit. I usually feel drained immediately after the treatment on weds then ok til the weekend when I get quite tired. My skin has been quite bad but I think that’s partly down to not washing my hair as much. I think I will be going back in it for the last six sessions after surgery so I’m not done yet!

 

Bee your outings sound great, I know what you mean about getting in a rut, I’m the same. Really need to get out and about more. 

I think you can get special ice gloves and socks for chemo? That you put in the freezer? Maybe have a look on amazon. 


Feel very impatient for my appointment tomorrow, just today to get through! 

Alwayshope08
Member

Re: Paclitaxel buddies

Hi Bee,

What a positive post to read 😊sounds like you’ve really enjoyed yourself and so you should! So glad you’ve enjoyed your Daughter’s 18th birthday. I think once you realise you can go out and enjoy yourself, you want to do it more! 
Thank you for the tip about the ice. I suppose I could ask the Nurses if there is anywhere to store some ice? Failing that, I could pop some in my fingers and toes when I come home.

Hope the treatment continues to be manageable. Take care xxx

 

Bee3
Member

Re: Paclitaxel buddies

Good luck with your surgery Amy. Wishing you a really positive meeting too.

I am exactly the same as you Alwayshope in that I have had 5 lots of paclitaxel. I read that ice on toes and fingers can help with numbness but haven't worked out how it could actually be done in the chemo ward! You are supposed to keep the ice on while you are having the chemo. I feel very tired on the treatment but otherwise it has been fine for me.

I went out on Saturday and had such a lovely time. It was the first time I had been into town for over 5 months. I had been given some vouchers for The Ivy and had to use them up. I also went into the Lanes to look for my daughter's 18th birthday present. She was so excited. I was so glad that I went as it made me realise that I could go out. People were wearing masks and the buses had distancing so I felt very safe. I feel that I have got into  a rut and almost imprisoned myself in my house but I have now completely changed. I am going out to town again on Friday and I am really looking forward to it.

Wishing you all the best with your scan results and minimal side effects.

Love Bee x

Alwayshope08
Member

Re: Paclitaxel buddies

Hi Amy,

Wishing you a very positive meeting on Wed/Thursday with your oncologist and surgeon. Feel that it’s always better when you have a plan in place. Well done for completing your Paclitaxel treatment. It can be a bit of a bumpy ride, but so far, I am finding it doable. Hope you have too!

I have treatment 6/24 on Wednesday. The side effects seem different every week! The most noticeable one this week has been the numbness in my toes! It doesn’t usually kick in until Fri/Sat after treatment, but last Wednesday I felt like I’d been slapped with a wet fish and had to go to bed for a few hours after my treatment. I’ve also had a week when I felt pretty good all week, so each week is different!

How have you coped overall on Paclitaxel? You’re further ahead than me and have had more treatments. I am expecting a cumulative effect, but hope it’s not too harsh, as I am only (nearly) a quarter of the way through my treatment.

Wishing you a last Paclitaxel treatment this week with little or no side effects and a really positive consultation. Take care xxx

amyc
Member

Re: Paclitaxel buddies

How is everyone doing? Wishing brilliant scan results and minimal side effects all round. 

I may be having my last paclitaxel for a while this week - I have appointments with my oncologist and surgeon on Weds/Thurs to confirm the plan but it looks like I will be having a break for surgery. Bit scary!