Sounds like fun putting up decorations with your 9yr old daughter. I'm going to hopefully have my 3yr old grandaughter here when we do ours. Children bring the most joy. 🥰
I've had a busy day. Bloods, flu jab appointment, bone jab appointment and oncologist call.
It's been decided that as I'm on 100% dose they will reduce it a little to hopefully help with side effects. Also because I won't be finished til January they are giving me Christmas week off!
No treatment on the 21st December.
I'm happy with all of that. So onwards and upwards.
Stay well and positive. Enjoy every minute of the decorating. Love xx
Yes, my feet sometimes feel spongy, or certainly my left one does. My nurse mentioned the spongy feeling to me on Wednesday, so it must be common with neuropathy. Definitely mention it to your Oncologist. Mine comes and goes, but if it gets any worse I will mention it to my Oncologist too.
Number 17, wow! You’re doing so well Jen and it is doing it’s thing! You carry on going. It will be number 13 for me next week and it is whizzing by.
Trying to get a little bit organised for Christmas now as it’s only 5 weeks away! Our 9 year old Daughter is so excited. Think we’re putting our decorations up early this weekend to bring some joy 😊Sending love and positivity xxx
I think I will follow your advice of ice socks during treatment and warm socks at home. I can but try.
Your toe sounds quite painful, I hope that improves for you soon. It's bad enough with numb toes!
Do you ever feel a little off balance with it? Sometimes my feet feel so spongy I'm not sure I'm walking well.
I have a call from the oncologist tomorrow so will be telling him about it. My next treatment is my 17th. Regardless of the side effects I'm hoping to keep going as it has so far been effective.
Take care. Stay well. Love x
You are right about it being a rollercoaster ride. Thank goodness we have this site where we can find others to help us along the journey.
It's good news about your biopsy, as new treatments are available to you and trials are there for the future.
Stay positive and ready to take on the next course of treatment. I'm sending you positive vibes for good results.
Glad your toes and hands are a little better this week. Each week seems to be different.
I keep my feet warm at home, but I keep them as cold as I can with the ice socks when having my chemo. I even placed my hands on ice blocks yesterday. I am trying to achieve the same effect as the cold cap for scalps. Although it won’t completely take the neuropathy away, it does take the edge off it. My left toe is not as sore now, but I will lose my nail at some point, as it is bruised. I had to do something as it had started to bleed a couple of weeks ago. I hope any other side effects are not too bad for you.
It’s so helpful to chat with you ladies on here because being in the same boat, you all understand.
Take care and have a relaxing weekend. Love and positive thoughts xxx
Glad you have your results back. That explains a lot then, with it having changed receptor status. It’s good that they are so thorough, now it will open up many more treatment options. I’ve heard that Herceptin is a very effective treatment and there seem to be a lot of women on that targeted therapy.
I am pleased that it has opened up so many more treatment options for you Bee and I feel really positive for you that this will put it in its place! Hoping your appointment goes well on Saturday and sending love and positive thoughts to you xxx
Hope you have had a good day today. It's been gloomy here but I have had a lovely lazy day!
So glad you have been told that you should never have to wait so long for your results again Alwayshope.
I hope that your toes and fingers continue to feel better Jen. You are so right that none of this is easy. We try to be positive and are called 'brave' because we do as we are told, but we don't have any other choice. I think the strain of keeping happy is one of the reasons we are so tired that we can fall asleep during the day.
I haven't got onto the trial that I hoped to get onto as it has closed. Although there are other trials that I might be eligible for, they are not likely to be my best choices. This is because the liver biopsy showed that the cancer in my liver is oestrogen positive HER2 positive. It used to be HER2 negative and the tumours elsewhere are HER2 negative. Fortunately it means that I have new treatments opened up for me.
I will have Herceptin and alongside it I will have Vinorelbine. Apparently this is a good and successful treatment for many. My consultant said that it was quite unusual for cancer to change status although I have read on these threads about several women that have had this. I was expecting to start the treatment in the next couple of days but I have to have my heart monitored first. My appointment for this is really early on Saturday morning! So I think I will start sometime next week when they can squeeze me in.
So I am pleased that I have a few new treatments open to me and I will have the option of a trial in the future. It really is a roller coaster ride isn't it.
Wishing you all the best.
I'm glad you have had a word and your consultant won't make you wait so long for your next scan results.
My toes and fingers have been a little better this week so far. Slightly swollen feet is the new problem and fatigue. This afternoon I thought I'd have a little nap and woke up 2 hrs later! 🙄
I'm glad the socks are helping you. One of the chemo nurses told me I should keep my toes warm not cold, so I've been living in thick socks which seem to help. None of it is easy is it? When I look back a few years and think what I would complain about, I now think stupid women. 🤔
Oh well it is what it is. Hope wrapping your hands and toes does the trick. Worth a try anyway.
Take care. Stay safe and positive. Lots of love x
It's so good to see the posts are now sorted and we don't have to search for messages.
Thank you for thinking of me. The side effects haven't been too bad this week so far. The nurses say I'm doing all I can to help with them. My fingers are much better and toes not as numb, but the swelling on my feet is annoying. They wont give me medication for them unless they get worse. So plod on slowly, in shoes that fit!
I really hope you hear about your trial soon. Waiting is the worst thing, well one of them anyway. I hope covid hasn't held things up for you.
Stay well and positive Bee. Lots of love x
❤️Jencat, I think the threads are going to revert back to how they were before with most recent post at the top do threads flow again ❤️hope that helps sending big ❤️👭❤️💕💕✨✨Shi xx
Thank you. I hope it carries on and they do reduce even more. I’ve got treatment number 12 tomorrow, so I’ll be half way through my treatment plan. I have to say it has flown by.
Hoping you hear about your liver biopsy soon and get a treatment plan in place. Please let me know how you get on.
Take care and stay safe! Xxx
Glad you’re healing well. As hard as it is, you need to rest and recover. The time will soon pass.
If you’re having 3 months without treatment they must be confident that you are in a great position to do that. I’d raise any concerns you have with them and they can then put your mind at rest.
Take care and keep safe! xxx
Hope you don't mind me popping on to your thread (I'm currently on Eribulin, but I did have 13 sessions of Paclitaxel throughout the Summer) but I've noticed that on the Primary Chemo Thread that their threads seem to now be in order-the original post is still at the top, but then followed by the most recent reply unlike on here where you have to scroll such a long way to find the most recent one! I just wondered if the moderators were aware of this as I think Bee was going to complain to them? x
They did make me wait too long, but said next time I have my scan, let the breast care nurse know that I’ve had it and she can then chase it up and get the results back to me quicker. The Consultant said I don’t need to be waiting 3 weeks for the results!
Sorry to hear your toes are sore. It’s really painful isn’t it, but I have to say that the socks are helping a bit. My thumbnails have now decided to join the party, so think I may have to wrap my hands in ice packs too on Wednesday. You’re doing so well with your treatment Jen and your scan results are excellent! You make sure you super cool your feet for your next treatment and hang on in there.
Take care. Sending love and positive thoughts to you xxx
It is good news that you are feeling much better and that you are healing well. I imagine it was very odd being inspected over a video. Hopefully you feel that you are healing well too!
It is annoying and boring when you can't do what you want to do but you will be able to soon. I am sure that your little boy just loves you being around and doesn't notice that you can't do as much. You are not useless but healing. I don't think anyone is going out much with this lockdown. I feel trapped indoors too but the days do seem to speed by without me doing much at all. I did notice myself falling asleep this afternoon.....I blame Judge Judy. One of the chemo nurses said she loved watching Judge Judy so I thought that I would watch her and she is strangely satisfying because you never know if she is going to be fair or very, very rude.
Did your consultant say anything to reassure you that being off any treatment for three months was ok? The team must feel it is the best thing for you but it's no good if you are worrying about it. Can you try to speak to someone to tell them your worries and concerns? Then, when they have hopefully reassured you, you can have a really relaxed and happy Christmas with your little boy.
Thinking of you, and everyone, and wishing you all the best.
I am sorry to hear that you are still suffering from horrible side effects. I wonder if the nurses could suggest anything else to help you cope with them. Could your consultant reduce your dose to make it more manageable? I know that can be done with some chemos but not sure about this one. Or maybe have more time in between if the paclitaxel if would still work effectively Hopefully you will have good results in your mid January scan but if it becomes too awful maybe you should ask if you can stop.
I am not on any treatment at the moment and still haven't heard about the trial yet. Fingers crossed I will soon.
Thinking of you all and wishing all the miserable side effects away.
Love Bee x
I am really pleased that you have had positive results. Hopefully they will be even better in your mid January scan and your liver tumour will have reduced a lot more.
Wishing you few side effects and all the best.
I am feeling much better... had a slightly odd video call today with one of the nurses where she inspected everything and apparently it’s all healing well. I’m a bit fed up not being able to do anything - haven’t been anywhere apart from hospital for two weeks now. It’s better when my little boy is at his childminder (mon-Weds) because then I don’t feel so useless and / or like I’m missing out on things. Should only be a few weeks like this though...
Scan results sound pretty good to me!
I’m getting a bit wobbly about the fact that I will have had three months off any treatment before I start anything new in Jan. That’s the current plan anyway... we’ll see.
Take care everyone xxx
They really made you wait for those ct results didn't they? Don't they realise the waiting is SO draining?
Sounds like it was worth the wait though! Stability and some regression is really good news. 🥰 If they are happy with you, go with it and hang on in there. 😘💕
I'm still plodding on with Paclitaxol. 16th treatment today! My toes especially on my left foot, which also swells a bit, are still numb. My fingers vary. They improve with stretching exercises I saw on line. I also have achy knees. The socks help to soothe things when I feel I've had enough. So side effects kicking in now, but like you I should be on it til January when a scan will see what's happening. If of course I can cope with it and SE don't get worse. 🙄
Wishing you and all you lovely ladies well. Stay safe. Stay positive. Love Jen 💕xx
These threads are still in a bit of a muddle and are not in order, but thought I’d put a quick post on anyway.
I finally received my CT scan results last Friday, after a 3 week wait. I’ve been told that there is moderate regression in my abdomen and several lymph nodes and that my liver is stable, no increase to the one legion. They seemed happy enough with the results and said the plan is to carry on with Paclitaxel and have another scan mid-January. I am pleased overall with the results, but would have liked just a little shrinkage to the one in my liver. It’s more than I hoped for at this stage, so I am hoping it carries on.
Amy, I hope you’re feeling much better after your op. Bee, I hope you receive your biopsy results soon and Jennie, I hope your feet have improved with the socks!
Hope you are all keeping well and have had a relaxing weekend. Take care. Sending love and positive thoughts xxx
I am so glad that you are now home and that you were looked after so well at St Thomas'. Reflexology too what a lovely treat.
Hope you are already getting used to the surgery but it is easier for nurses to say than for those who have it.
Thinking of you.
Love from Bee xx
I thought I was going mad, or had gone back in time. What a muddle. Hope we will be back to our normal soon. Jen x
I am struggling to find the most recent posts too, although I have seen that Amy was being discharged, so I have posted on that. Thanks for flagging it up. I had to click on your username to reply to you. Hope you’re doing ok xxx
I bet you’re glad you’re home now! Hope you’re being pampered!
They really have looked after you at the hospital, which definitely makes life easier. It’s good to hear such positive feedback from the nurses to reassure you too.
Take care and get plenty of rest xxx
Please try and stay positive. My only advice is don't just rely on conventional medicine. Have a look at Care Oncology in Harley Street. Buy the book How to Starve Cancer by Jane Mclelland. Available on Amazon. Take control of your body.
I do both of these protocols. Have just finished chemo incl Paclitaxel. i found it brutal... But others have coped well.
Consider medicinal CBD with a high THC ratio.
Look at Dee Mani Mitchell website and How to Starve Cancer website. This lady is causing a real wave in treating cancers of all types. You can do this... Wishing you well. Be positive xx
I have asked the moderators to change our thread back to how it was. Here is my message to them.
I started the Paclitaxel Buddies thread under secondary breast cancer treatments and medical issues. I have noticed that my original post is now the leading post and I am not happy about it. I want it to be as it was with all the posts in order. It is such a muddle. I have my settings set with newest posts first but that has also changed so I have posts all mixed up. I am very upset and also irritated by this and would like the thread to be returned to normal.
I have no idea why my original message is now the lead message. I have also not got the newest messages first even though my settings are from newest to oldest. What is going on?
Well done Amy, done and dusted. Going home what a lovely feeling that is.
St Thomas's sounds an amazing hospital. Reflexology during chemo, what a treat. I'm glad you managed some of that after surgery at least.
Now you MUST take care of yourself and recover well. Enjoy a good sleep, in your own bed. 🥰
Lots of love
That all sounds lovely Bee. Sorry you’re having to wait so long to get more info...
I’m going home today! Can’t wait although am a little bit nervous. Will be nice to have a proper shower and get in my own bed though.
To complete the hotel package, I was given a reflexology session yesterday! Apparently if I was having chemo at this hospital I could have it during treatment sessions!
The nurses keep telling me how good my surgery looks but it feels very weird. I suppose I will get used to it.
Have a good week everyone x
I am really pleased too that your surgery went well. Hope you recover quickly without being uncomfortable. Love the view. Looks like you are in a posh hotel. 🤣 If only!
I am glad that the special socks are working well. So good when something really helps.
I was so sorry and sad to hear the news you shared Jennie. It is unbelievable and must be so hard for family and friends when it is sudden and unexpected. 😪utterly awful.
I haven't heard back about the trial yet and have to wait 7 to 14 days for my biopsy results. I get to see my consultant next Tuesday though. I phoned my BCN today and she wasn't able to give me any information but is going to chase things up.
My daughter had a great birthday yesterday and the fire was a huge success. My only worry was my 83 year old mother staggering around it throwing twigs on. We had a firework box from Aldi to finish off and that was good but made me jump out of my skin twice. At first because it was so loud and at the end because the stars seemed to be all around my small garden rather than up in the sky. Also forgot about the birthday cake until we were all going to go to bed. Then the candle sparklers just wouldn't light so we had to quickly find some old used candles and then spent ages lighting the sparklers. Of course the smoke alarms then went off much to my daughter's amusement. Definitely a birthday to remember. Sadly my sister, who bought the fireworks and wood, is having to self isolate so couldn't attend and we can't see her for 10 days.
Hope you all have a good week.
I'm so pleased to hear surgery went well. You need to take good care of yourself now. Be happy to be spoilt for a while. 🥰
Your room certainly has an amazing view. Enjoy. Xx
Glad to hear your surgery went well 😊Put your feet up now and get some well deserved rest!
That certainly is a room with a view! Wishing you a speedy recovery from surgery. So pleased it went well for you. Take care xxx
The surgery has gone well although I’m feeling very battered and bruised. Got my own room with a view, though!
Thanks for the good wishes xxx
Good luck for today. Sending lots of positive thoughts to you and hoping you have a nice view from your window. Take care and look after yourself xxx
So sorry to hear your sad news. Always such a shock when it is somebody close who appears so fit and well.
I am glad your socks arrived and are comforting. I wore mine on Wednesday and I have to say my feet don’t feel as sore this week. Definitely worth trying, even if it takes the edge off the numbness.
Have a relaxing weekend and take care xxx
I am glad your biopsy went well. I think sometimes it’s the thought of it that’s worse, or at least that’s what I tell myself! Thanks for the reassurance, because I think at some point I’ll need one too.
Have a fantastic weekend and enjoy your Daughter’s birthday and your bbq 😊 sending positive thoughts and love xxx
Hi Bee, Amy and Alwayshope
I've only just caught up on messages from yesterday. Very sad news shocked me to the core. A good friend and colleague died suddenly in his sleep. His wife found him. He was very fitness and health minded so I can hardly believe it. 🥺
Bee I'm so pleased your biopsy went well. I had one a year ago and it went well too. I hope the results come through quickly and you can move on.
I was pleased to do the trial, it shrunk the primary and made surgery easier. It was good and is still good to hear that others benefited from palibo later. It was only when it came back they said I couldn't have palibo or letrozole again. So I really hope you find a trial to suit you.
Amy good luck and quick recovery from surgery. Hope you are enjoying a lovely view of London.🥰
Alwayshope. The socks arrived. I tried them and they are so comforting. Knowing they are there to use when I need them is really good too. As they say 'every little helps.'
Have a good weekend all
Take care, stay safe. Xx
I just wanted to say that my liver biopsy went really well yesterday. If you ever need to have one then it is nothing to worry about. What I do hate is the way they have to explain all the possible risks just a few minutes before the procedure. It made me go from being pretty calm and relaxed to feeling absolutely terrified, especially the bit where the doctor said he might have to go in several times if he wasn't able to get a big enough sample!
Anyway it was fine and pain free. Everyone was so kind and I don't think it could have gone any better. I have to wait between 7 and 14 days for the results which does seem quite a long time.
Hope you are all having a good week and that the lockdown is not too much of a pain for you.
Thanks for your positive message.
I think there are a lot of trials going but it seems almost impossible to see which would be best for me and my circumstances. I tend to rely on my consultant to do the best he can for me as the expert. However I have started to move away from this position as the medical experts, no matter how good they are, don't have such an investment in us as we do! There isn't a trials team at my hospital and I didn't realise that you can speak directly to a trials team. I feel that I have an awful lot to learn about it all.
It's my mum's 83rd birthday today so I have been trying to make sure she has had a lovely day. I did beat her at cards several times so that wasn't so good for her. I have come up to bed for a little rest now . It's funny how quickly I have got used to doing my own thing during the day. I hope my mum will stay with me for a couple of weeks during lockdown as she was very lonely during the last one. However I think if she does then I will have to build in times for me to disappear for a few hours. Trouble is she might then decide just to go home. She can be very impatient!
I like the idea of the “Smores” and luckily have the digestives and the marshmallows. I am really looking forward to our bonfire. Hope it works as well as I am imagining! 😋
All the best to you xx Bee
Thanks for your message. I wanted to wish you all the best for your surgery on Friday. I am sure it will go really well. They know what they are doing.
It is good that your oncologist is well connected regarding the trials as I think it probably matters as to what you are offered. I agree that it is very hard to research them yourself as there are so many. I was really surprised. I do trust my consultant so I don't think I need a second opinion just yet. If I don't get on the trial I will push for a different one.
I can't wait to get the results of my liver biopsy as if the cancer has changed in the liver then maybe more treatment options will open up for me.
Wishing you all the best and will be thinking of you tomorrow.
Thanks for your message and the positive vibes! Means a lot.
Are you pleased that you did the trial? I suppose it was good to find out early that palibo and letrozole were not for you. I am really desperate to do the trial as I want to grab every opportunity that I am offered. I just can't understand why my blood results relating to the liver were so good and yet I have progression.
I have got all I think I need for the bonfire apart from kindling. I have got strange woody firelighters so I hope they will work. When I did my first bbq I thought how difficult can it be to light a fire? Then it just wouldn't light and I had to zoom out and buy a load of fire lighters. 🤣 The weather is supposed to stay dry and crisp and her birthday is on Sunday so it should be perfect, but freezing!
Love to you x Bee
I’ve read up about trials to see what the current ones are, but there may be more available. There seem to be new ones coming along all the time, which is reassuring . Like the other ladies say, Nicky08 may be able to offer you advice re this, as she has first hand experience.
Sounds like you had a great time with your Son and have this weekend to look forward to with your Daughter and family. “Smores” are nice toasted over a fire. We hadn’t heard of them until last year! Two digestive biscuits with toasted soft marshmallows in the middle. 😋
You can always ask for a second opinion Bee and speak directly to the trials team at your hospital to see what you could go for.
Keep us all updated. Sending you positive thoughts and hugs. Take care xxx
That’s interesting what your consultant has said, I hadn’t heard that.
I’m triple negative so there are fewer treatment options available for me, and I’m keen to find out about immunotherapy trials if I can, as it’s a relatively new thing for tn. Also, I live in London so am in easy reach of the centres, so it seems sensible to research all options. It’s all such a learning curve!
I hope your surgery goes well. What a nuisance all this isolating is.
Do you need a trial so soon after chemo? My Consultant has only mentioned trials in the context that two treatment lines have to fail consecutively. She seems to think they are a good idea but, obviously, none of us want to be in a position where treatment fails.
Like you Amy, I don't know much about trial criteria so am grateful for the collective knowledge on this site. Nicky08 definitely has the experience and nouse to advise on this.
Angel Eyes x
Great to have some celebrations to take your mind off things Bee. Sounds really nice.
We’re all isolating now, before my surgery on Friday...
I don’t know much about trials, I have just asked my oncologist to look into it for me. He’s quite well connected I think. I tried to research them myself but it’s quite hard to understand if you meet all the relevant criteria. I think the main places for trials are Guys, St Barts, the Royal Marsden and the Christie in Manchester. So I guess you could always ask for a second opinion with a consultant at one of those? My oncologist works at Guys on trials but there is nothing there for me so he is asking a colleague at St Barts.
I hope you get some good news xxx
A 30th and 18th to celebrate, that's lovely, a bit of normality in these strange times and a boost for you.
Trials! I've not had to fight for one, I think Nicky who has amazing advice for us all is your women there. I do know they considered a trial for me earlier this year, then realised I couldn't do it. I did a trial in 2017 before surgery for palibo and letrozole combined and have been told I can not take either of these again as it was only partially successful.
Wishing you well Bee. Enjoy the bonfire. Lots of love and positive vibes coming your way xx
Dear Amy, Jen and Alwayshope,
Thank you for your messages. I will be staying in contact as you are all so lovely and I also value your support and sense!
Had a lovely day yesterday as my son was 30. Had to give blood but apart from that we mooched around the shops and had a tasty meal out. Then we played a really good game called Ticket to Ride which sounded really complicated but was fun. (I lost but I won't next time as I got the hang of it a bit too late! 😂)
My daughter's 18th is on Sunday and we will be having a bonfire. Have bought the wood and marshmallows. I am pleased that we can go ahead with something she wanted!
If I am told I can't do the trial how can I fight to do one? Have any of you had any experience in this?
Love to you all.
Sorry your results weren’t what you had hoped for, but I am glad Paclitaxel has blasted your lymph nodes and kept your spine stable.
Let me know how you get on this Wednesday Bee. There are so many treatment options and I too may be looking shortly. I’ve still not had my appointment through to see my Consultant for my CT results.
I know you’re no longer on Paclitaxel but you can still be a buddy. This group is such an invaluable support, that if I move treatments I’ll still be in touch with you ladies for that support.
Take care Bee and all on here. Stay safe and positive xxx
Hi Bee, just wanted to send my love. Sorry to hear things haven't quite gone to plan, but I agree with Amy. Trials are good, you have had some stability which is also good and you are such a positive lady you can definitely do this.
Lots of love and hugs. You don't have to take paclitaxel to keep in touch. Take care. Stay safe 💕xx
Oh sorry to hear that Bee. It’s really good you’re looking at trials though, I’m doing the same as I have a bit of time before my dr wants me to start on a new treatment in Jan after my surgery/radiation is done.
I’m sure the RM will get back to you quickly, personally I think it’s definitely worth waiting to see what they can offer you.
It’s good that some areas have remained stable - you just need to find the right thing to zap that liver. You will do it xxx