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Paclitaxel buddies

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Re: Paclitaxel buddies

Hi Alwayshope, thanks for your kind thoughts and best wishes. I've been making a note of when/If I have tummy ache to see if theres a pattern. At least I can tell the oncologist if I notice anything. 

I think overall the treatment has been kind, I feel quite well and active. I'm dreading the results of the scan, always scary. But had to be done, who knows they may be really good.

Hope all is good with you. Take care. Stay safe. Jen x

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Re: Paclitaxel buddies

Hi Bee,

What a really positive story regarding the old lady who has lived with secondaries for 5 years and hasn’t had chemo. Gives us all hope, because that is possible. 
For now, I am hoping Paclitaxel does something and gives me even more hope. Hope you are doing ok on treatment Bee. Take care xxx

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Re: Paclitaxel buddies

Hi Jennie,

I am glad you have no tummy pain. You can definitely do without it! I hope you are coping ok otherwise, although I know it’s not quite that easy! I am finding that the weeks fly by. The Wednesday of treatment day seems to come around really quickly, but part of me doesn’t want it to whizz by, as I know that brings me nearer to scan time 🙄I dread scans, more so because the last one showed it was on the move and had shown itself to be in a couple of areas. Prior to that I’d plodded along on monthly Fulvestrant injections and daily Abemaciclib tablets for 12 months. I really disliked the tablets as I’d be running to the loo all the time, one of the notorious side effects! So in all honesty, I don’t miss that regime! I am hopeful your next scan is a very positive one Jennie and you can just concentrate on lots of lovely cuddles with your new Granddaughter 😊love to all and hope the treatment is being kind! Xxx

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Re: Paclitaxel buddies

Hi Amy, I’ve just had treatment 5/24 of paclitaxel. I thought that was a lot, but then I’ve seen on here that people have had 27 (I am sure that’s what I read) and then gone onto another treatment. I think I’ve got a scan halfway through to see what’s happening. I am hoping it works it’s magic and zaps these little nuggets! Xx

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Re: Paclitaxel buddies

Thanks Bee. Treatment yesterday and no tummy pain at all today. I'm going to make a note of when it happens I think. Obviously any pain worries me as it does all of us. I'm just going to tell myself its the treatment. Mines suppose to finish after 12 I'm on 10 next. I've decided not to rely on that incase they add on more. 

If I can cope I will stay on it without a break too. 

Take care x

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Re: Paclitaxel buddies

Out of interest is anyone carrying on with paclitaxel indefinitely? Or are we all on a set number of treatments? I think most people are 12 or 18? 

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Re: Paclitaxel buddies

Yeah it’s an interesting article. I’ve been a bit confused about this because my oncologist has implied that I might have a break after current (first) treatment ends. I find this quite worrying... just logically it doesn’t seem very sensible. I’m likely to have surgery now and I asked what would happen after that and again he said that they would probably give me a break and watch to see what happens.

 

I’m in for treatment 11/18 tomorrow and starting to struggle a bit. I’m looking forward to the end of treatment but also quite scared about what comes next. I will hopefully have more of a plan in the next week or so. 

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Re: Paclitaxel buddies

Ohh. Just had a look at the link MelMel sent which outlines that research shows those who have a break from chemo have worse outcomes. I doubt any oncologist would recommend a break. However I do think of my lovely old lady who has lived with secondaries for 5 years and is unable to have chemo. The treatments she is having must really suit her.

It is a rollercoaster ride for us all.

x x Bee

 

 

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Re: Paclitaxel buddies

Hi Everyone,

It is so good to hear from you. I am sorry that you are getting stomach pains Jen as it wears you down but hopefully your scan results will show having paclitaxel has been worth it. I am very positive for you.

I would only want a break from treatment after I have had my final load of paclitaxel (which will be mid January) and a scan that shows greatly reduced tumours, or none! Otherwise I think we have to accept that we are on the treatment treadmill. I think your idea of a break over Christmas sounds good Sticks and if you have a really positive scan and are finishing with paclitaxel then I think it is a question worth asking. 

Love to all,

Bee x

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Re: Paclitaxel buddies

Hi lovemama,

I've just read all if that info about the trial. I'm on continuous chemo but no other drugs, other than 3 mth bone injection. 

It's interesting to read how the trials went although always scary to read overall survival outcomes, I try to brush over that and refer to the overall outcomes of some of the wonderful ladies on this forum. That's what keeps me going. Thank you ladies. 

I'm supposed to have paclitaxel for 12 weeks, I'm on my 10th next week. Apart from tummy aches recently and initial extream tiredness, I've done ok so far. 

I have a scan next Tuesday and then it will be see how it went. 

Hope you are ok, take care and stay safe. Jen💕xx

 

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Re: Paclitaxel buddies

** edited the names. chemo fog 😀 **

Hi Sticks54, totally agree with what Angel said. Though sometimes I might challenge 😆, if me I would definitely ask my onco for all the odds of each plan first. xx melmel

By the way, below is just to share.

https://www.breastcancer.org/research-news/continuous-chemo-better-for-advanced-her2-neg-bc

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Re: Paclitaxel buddies

Hi Sticks,

I would keep going if you can. 

I know it's hard. I've just finished eighteen weeks of Paxlitaxel and struggled psychologically after week twelve. Three months is a long time off especially if things are going well but only your Oncologist can advise you.

All the best, 

 

Angel Eyes x

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Re: Paclitaxel buddies

Hi, I'd be scared if having a break. Have you been experiencing some severe side effects?

I've just done 9 weeks so 3 cycles. I'm having alot if tummy aches which my oncologist is aware of and says it's a side effect but last night it was worse so I'm scared. I told the chemo nurses today when I had treatment but they said bloods are all good, no warning signs there. As i have a scan iin 2 weeks they say see how it goes and report it if it gets worse. So having a break would be based only on good results,for me anyway. Not brave enough on that one. 

Hope you get your breaks if you want them.

Love Jen x

 

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Re: Paclitaxel buddies

Oh Bee I was so pleased to read your post about wanting some time off.  I have had 5x3 paclitaxel treatments and I now have my scan due with a telephone consultation a week later.  Am I wrong in asking for the next three months off and resume in January? I feel my body is crying out for a break.

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Re: Paclitaxel buddies

Thanks Bee. 

Xx

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Re: Paclitaxel buddies

Hi Jen, 

Many congratulation.Enjoy those lovely cuddles and the smell of a new born. I am so pleased for you and glad to hear mum and daughter are both doing so well. I feel hopeful and positive that all of us will be going strong for many years to come so tell any doubts to leave you alone.

Glad you saw some tiger Alwayshope!

Love and wishing the best to you all,

Bee xx

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Re: Paclitaxel buddies

Thank you ladies, just had the first cuddles which are priceless. But then it happens, my thoughts kick in. What if???

I hate this disease. It tries to take away the good times! Can't let it happen. Must bat those negative thoughts away. I know this happens to us all. Don't  have any magic remedy to take the thoughts away though. 

Most of the time I'm ok, hope you are all ok too. Knowing others who really know what it's like helps a little. 

Take care ladies, didn't want to bring any of you down. Hope you don't mind me sharing. Take care Jen 💕xx

 

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Re: Paclitaxel buddies

Hi Jen

What wonderful news! Congratulations to all of you. She weighs the same as our Daughter did 😊beautiful name too. What  a lovely focus to have, spending time with your new Granddaughter. Made up that it’s lifted all of your spirits and very happy for you all. Take care and enjoy those cuddles 🥰xxx

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Re: Paclitaxel buddies

Hi Bee,

I was told anything above 1 for neuts and they’ll treat you, so if they’re 0.9, you’re right on the cusp for treatment to go ahead. Like you say though, if treatment doesn’t go ahead this week, it gives your neuts even more time to recover.

The Ivy! Wow! I am a real foodie, so I’d be looking forward to that 😊and what a lovely time you’ll have celebrating your Daughter’s 18th birthday. Don’t let “c” rule your week Bee, this is about celebrating your Daughter’s birthday. “c” needs to realise that there is a lot more to life than it! It likes being the centre of attention, well don’t let it be this week, because you’ve all got a milestone birthday to celebrate!

Have a fabulous weekend and enjoy your Sunday lunch. We didn’t t see any Lions 🦁 yesterday, but we did see some Tigers 🐯and had a lovely afternoon. Take care xxx

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Re: Paclitaxel buddies

Congratulations, Jen 😊

 

Angel Eyes x

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Re: Paclitaxel buddies

Hi ladies, 

I've been reading your posts and it's good to hear you are getting out and about. Bee I hope your treatment resumes soon and you get back on track, I'm sure you will.

I'm really just popping in here to spread good news. I now have another  gorgeous granddaughter. Paige 7lb 3oz. My daughter and baby are doing really well. They came home today, so we hope to meet our new little one tomorrow. This has really given us a lift in spirits. Helping us forget my health for a while. Got to keep going now, lots more to live for.

Take care ladies, love Jen 💕xx

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Re: Paclitaxel buddies

Hi Alwayshope,

Thanks so much for your reply. Hope you have a lovely time with the lions! Sounds fun.

It is very unsettling to be told one thing and then another isn't it as then you begin to doubt everything you are told. I am sure I was told that my neuts were 0.5 but my breast care nurse said 0.9 which I feel isn't too bad. I have some nurses who will tell me my tumour markers and some who won't as they feel the consultant should tell me. I know there is someone on the forums who always asks for her blood test results but I think my team would be shocked if I did.

I phoned to ask the time of my appointment next Thursday as I have to make arrangements with the iv team to come and take blood through my port. They say they are fully booked on Thursday so will let me know on Monday. In the meantime I had a call from my breast care nurse to chat but she did mention that even if I didn't have chemo for a couple of weeks it wouldn't matter and would give me a chance to improve. So I guess there will still be no appointment for me when I am phoned on Monday. It will mean that I can stick to all the dates I have been given until mid January so that's good. Also I have booked to go to The Ivy next Saturday and before that have a look in some jewellery shops for my daughter's 18th birthday present. So I shall be happy now if I keep my free week this week.  

The nurse did talk through some of my worries. She said that I should ask my consultant if I have at least two years as he can always say he hasn't a clue if necessary. So I shall. I am also going to ask that if paclitaxel works well and makes the tumours go do I go straight onto another treatment or can I have 6 months off? I really want to have some time where I feel like I used to. Probably wishful thinking but hope not.

Sunday lunch is on as everyone is looking forward to it so I hadn't got the heart to cancel. Hope I don't regret it.

Hope you have a lovely weekend too.

xx Bee

 

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Re: Paclitaxel buddies

Hi Bee,

Sorry you couldn’t have your treatment this week, but make the most of hopefully feeling well this week. I have mine every week too, but no week off for me at the moment. The nurse said my bloods for my liver were raised this week, but then when she looked at the week before, she said they’d actually come down quite a bit. Nothing was mentioned about my bloods the week before, so I am not even sure what is classed as raised levels now? It seems to depend which nurse is looking at them.

You be careful Bee if your neuts are low. You don’t want to risk getting an infection. Only you can make the call about Sunday lunch, as it’s a tricky one. I suppose you could reduce the risk and just invite one person round? Your neuts are hopefully on their way back up now, as you haven’t had treatment this week. I hope you have a nice weekend anyway. We are off to the Safari Park later to see some lions! Xxx

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Re: Paclitaxel buddies

Hi Alwayshope,

I am hoping Bale is here to play football. He's had enough golf for a lifetime! Who can forget Kevin Keegan and his hair? 

I couldn't have my paclitaxel yesterday as my neuts were too low. I think it was because I had two weeks together whereas I had had a week in between previously. My oncologist wanted me to have the 3 weeks on and one week off to have the most impact. Hopefully low neuts is a one off but it means I will have to have treatment next week on what I was hoping to be my week off. I had bloods taken on wednesday and the iv nurse who took the bloods left the gripper needle in my port so I still had to go in to have the needle out. I hate life dominated by treatments. My mum, sister, son and his girlfriend are supposed to be coming round for sunday lunch so now I'm not sure if they should still come. I thought we could all wear masks and I could eat mine in another room. Do you think that would be ok as I don't want to end up having to go to hospital with an infection? 

Wishing you all a good day, shrinking tumours and no progression.

Love Bee x

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Re: Paclitaxel buddies

Hi Angel Eyes,

Love LFC I do 😊. Always looking to the next game and whether it’s televised, so we can watch them. Obviously no chance of going to watch a game at the moment. The good thing is because we are champions, most of our games are televised 😊 You made me laugh about Kevin Keegan and his curly hair!

Did the Paclitaxel do it’s job Angel Eyes? I can cope with it as long as I know it’s got a chance of working and shrinking these little nuggets! Take care xxx

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Re: Paclitaxel buddies

Hello Alwayshope, 

You do make me laugh going on about Liverpool!Football Club

Kevin Keegan's curly hair did it for me when I was a little girl. I loved him and still support LFC. (He was a great manager, as well).

Stood on the kop once, in 1986 😊

Twenty four Paxlitaxel? I thought I had a lot with eighteen? I got tired psychologically towards the end but that's just me. 

All best, 

 

Angel Eyes x

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Re: Paclitaxel buddies

Hi Ladies,

Congratulations Jennie, what wonderful news! 😊I love reminders that life goes on and it’s not all about this disease! It needs to know that we will still have happy occasions, even though it is hanging around! 
I am finding this thread such a great support. We are all in the same boat and we need to row together. Rowing together means we can hopefully ease each other’s worries!

Amy, our Daughter was 2.5 years when I was initially diagnosed and now she’s over 9.5 years! I hope that gives you hope that you will be around for many years to come!

I am sat waiting for treatment number 4/24. I had a chat with the nurse before and she said there are many options with breast cancer treatment, so let’s all keep rowing 🚣‍♂️ 
LFC are my go to when I want to try and zone out. One of my closest friends is a Spurs fan and we have regular chats about Tottenham’s signings. She thinks Bale has come to Spurs to play more golf. I am hoping he plays some de ent football, as on his day, he is world class!!
Love to you all ladies. Sending positive thoughts to you all re treatment and scans ❤️Xxx

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Re: Paclitaxel buddies

Dear All,

I do love to read all your posts. It gives me so much more hope as you are all so positive. I know it's not possible but I would love to be told that I have at least ..... years and then I feel I could relax a bit. Still I agree that we need to make the most of every day and I do try. 

Congratulations on your news Jen. I think having a grandchild must be wonderful. I did tell my soon to be 30 year old son that I would love to be a grandma and I got a curt response, which, to be fair, I did expect. 🤣

I have a soft spot for Liverpool FC too. My little brother has always supported them and is now married to the most amazing woman from Liverpool and they enjoy watching them , as do their two little children. My team are Tottenham as my mum and dad were both from North London but I'm not a big fan of Jose.

Yesterday I scrubbed, well washed, the walls and skirting board in my hall and they came up really well. So I don't need them painted. I couldn't believe the difference. Amazing what can make you happy isn't it. I was given some vouchers for the Ivy when I retired so I have booked that and am looking forward to it.

Hope you all have something to look forward to.

Wishing you all well and positive results from any scans and tests.

All the best and love,

xx Bee

 

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Re: Paclitaxel buddies

Thanks Amyc, yes it's very exciting, just hope it all goes ok.

OMG overwhelmed is an understatement I should imagine. 2 year olds bring so much joy but having this diagnosis isn't easy as a young mum. I wish I could give you a hug and say it will be ok. 

Take heart if you can from all of the ladies on here who have survived for years and lived well. You're young and so probably otherwise healthy. I'm sure that stands you in good stead. I really hope so.

I hope the treatment is kind to you and that you have more up days than down ones. I'm sending you all my love and best wishes. Take care. Stay safe. Lots of love and hugs, Jen 💕xx

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Re: Paclitaxel buddies

Congratulations Jen that’s so exciting! 

I have a two year old son so I sometimes find the ‘what ifs’ pretty overwhelming. Especially when I start thinking about how hard things would be for my partner on his own. 

But I also have a lot of days when I feel happy and normal so it’s just about making the most of those days, and enjoying life, isn’t it. 

I’m due for treatment 10/18 tomorrow. I have a bit of itching where my picc dressing is so they want to keep an eye on that. Otherwise, plodding along and doing ok. Hope everyone else is doing ok xxx 

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Re: Paclitaxel buddies

Ahh another LFC fan. I'm from Liverpool originally but now live in Cornwall. I will support them forever and when I go to the Anfield in the sky I hope to go to 'you'll never walk alone'.

It's hard to put 'what ifs' out of your mind with secondaries isn't it? One day I'm great and feel normal another day it's on my mind. How long? How I'll know? Is the treatment working? What if??? .......

I have some exciting news. My daughter is expecting her second child this week. Yes im that old. 61 to be exact. We are really excited  but cant help those 'what ifs' creeping into my mind. I adore my 3 year old grandaughter and hate to think I might not see her grow up. So what do I do? Hope, enjoy every moment with her, laugh as much as possible. Be there for my fantastic husband, 2 gorgeous daughters too. Hoping Boris doesn't pay to that later!

Keep well ladies, keep going, bat away the 'what ifs'. Enjoy the moment as much as possible. And remind me to do the same please. We all need this support network. So glad to have you all to talk to.

Lots of love Jen xx

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Re: Paclitaxel buddies

Hi Bee3,

I am sure you’ll come up with a suitable name in time. I try to laugh my way through everything, but it’s not always that easy is it.

Our Daughter was 2.5 when I was diagnosed with this horrible disease. I try to take comfort from the fact that she is 9 now and I am still here. Every new school year she starts, I think, well I am still here to see all this and I am very grateful.

I love watching my beloved LFC, so for me, football and doing puzzles is my escapism. I think keeping busy is a great distraction, as you’re thinking about something else for a while and not just this!

Take care ladies, stay safe and enjoy this glorious sunshine while it lasts ☀️ xxx

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Re: Paclitaxel buddies

Hi Alwayshope,

I haven't come up with anything remotely original as yet. Probably never will, 😂

I think I shall go for the honey though, even though I am Bee, I'm not particularly keen on honey. 

I am thinking of trying harder to do more and live more normally. I am going to be much more positive this week and go for long walks and think about exercising! I used to love pilates so maybe I will try that again.

I have a mountain of ironing which, when people offer to do something, I feel like directing them to but haven't had the cheek as yet. Being at home most of the time has also made me realise everywhere could do with a good paint. 

Hope everyone has a good Sunday and few / zero side effects.

All the best,

Bee xx

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Re: Paclitaxel buddies

Hi Bee3,

I am glad it made you laugh. As it’s there to help me, I thought it deserved a pet name. I look forward to hearing what name you come up with 😊

What an amazing lady you met at the hospital.  We all need to chat to people who are still living with secondary breast cancer years down the line (Nicky08, I have noted your incredible journey) and that is why I am on here, for support and to give me hope!
I think you should go for the honey, Bee3, as with the “Bee” connection, it should definitely help! Take care ladies and hope your treatment is kind to you all xxx

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Re: Paclitaxel buddies

Hi Angel Eyes,

I hope you get a port sorted and remove the image of a flash bottle from your mind, it is honestly ok 😊 xx

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Re: Paclitaxel buddies

Hi ladies, especially Angel eyes who is gathering good info about ports. Personally I’d say you shouldn’t do housework - but not because of the port ha ha - it’s just bad for you! For me I can do anything I had done before, no problems lifting or anything. A friend who had one fitted for her primary said ‘ that’s the end of sleeping on your front’ but even with my fairly prominent one I can do without it troubling me or me noticing it. Even the seatbelt issue I mentioned at the beginning went way after the wound had healed - although it’s still annoying where it is sited for both this reason and being more noticeable. I also had quite a bit of bruising, but no pain afterwards and it was used probably about a week after it was put it, but only because I had been able to get it done in plenty of time before changing treatments. Other ladies I know who had one in had theirs used a just a day or so after, as some of you have, so it doesn’t seem to matter about when it’s done.

As lovemama has sent a photo of her port and where the tubing goes I would say mine just looks like a slightly prominent vein but only if you really looked hard for it. The tubing is very fine and although it had to go over my clavicle it is a tiny bump at that point. 
Nicky x

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Hi Jen, 

Thank you for your reply. 

I'll wait to see what my Oncologist says on how they fit the port because I've no idea what they do. For some reason, I think my hospital is backward but this may or may not be the case?

I still can't get the image of a length of hosepipe and a Flash bottle out of my head, however, so the photos everyone has sent are really helping.

Thanks so much again, 

 

Angel Eyes x

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Hi Alwayshope, 

Thank you for your reply. 

I am glad your wound is healing well and thanks for the offer of a picture. Yes, please 😊. The photographs everyone has sent are really helping (although, it's an odd thing to build up a portfolio of pictures about!) 

'Singy' is a great name, by the way 😊. It did make me smile. 

Thanks again. 

 

Angel Eyes x

 

 

 

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Re: Paclitaxel buddies

Hi Lovemama,

Thank you for the photograph and your reply. 

It is incredibly helpful.

I can see that the way ports are inserted vary a bit. Yours looks like quite a neat job but I guess there's no real way of knowing how it will look until after the event? 

Thanks as well for the info about which side the cancer has been and that effecting where the port is placed.

Also very helpful. ❤️

 

Angel Eyes x

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Re: Paclitaxel buddies

Hi All,

You did make me laugh with your name for your port. Alwayshope.  I am going to have to come up with one for mine now! 

I have learnt such a lot from all the postings. It is so good that we can all help and support each other with our experiences.

I didn't know they could go in the arm. I had no choice, it was put in my chest and is sort of in a line with my underarm. I can make it out but I don't think people would notice it unless they knew it was there. I can move around just as I did before so I think you would get used to it pretty quickly Angel Eyes. I knew I did not want a PICC line as I can't bear anything left in me. After a CT scan I find it hard to wait with the needle in me still for the 15 minutes that they make you sit. I asked if I could have a portacath.  They are much more expensive so they prefer you to have a PICC line. I can do housework, albeit not as often as necessary, and I can lift my dogs on my bed.

I had chemo, premeds and blood taken all through it yesterday and apart from the split second of discomfort  when they place the needle I didn't feel a thing. I really think they are brilliant.

There was an old lady sitting next to me, it was actually her 81st birthday, and she has had her port for 3 years and says it has been so good as her veins kept popping before. She has been living with secondary breast cancer for the past 5 years although she can't tolerate chemo so she is on other treatments. It made me feel so much more positive as I keep thinking I won't have more than a couple of years. I don't know why I think that way and I wish I didn't as it makes me so sad as I have a 17 year old daughter. The lovely old lady also said that she has a spoonful of that very expensive honey every day too so I might try that! 😋 Apparently it is only £5.00 in Aldi.

Wishing you all the very best and a lovely weekend.

Love Bee xx

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Re: Paclitaxel buddies

Hi Angel Eyes,

Looking at the comments on here about ports from the ladies, it really is the way to go. I’ve had 2 x PICC’s in the past for treatment and whilst they were great, they were on show and you couldn’t miss them! This is more discreet and I like the fact that I can shower when the site has healed. 
I get my dressing removed next week and whilst I have bruised a lot, it is not very painful. I have a more painful site lower down my arm from when I went to get bloods taken the day before! Hence why the port is for me!
I will post photos when my dressings are off, but as you can see from lovemama’s photos, they do a tidy job.
p.s. I sleep on my left side and I can’t feel the port when I lay on it.  Thanks for your feedback re ports ladies, I’ve found the comments really useful, as I only had mine fitted 2 days ago.
My port is called “Singy”, short for Singapore, as I’ve always wanted to visit there and it is meant to be one of the prettiest ports in the world. I haven’t given up on that trip and maybe one day “Singy” can meet her namesake ❤️ Take care ladies Xxxxxxxx

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Re: Paclitaxel buddies

Hi Angel eyes. To begin you may feel a bit sore. I did. But very soon you will be able to move as normal. I forget its there now. The only  time  I notice it is when I wash in the shower. Then I can feel it more under the skin. Mine was pushed down into my breast when it was inserted. I was awake so I remember that bit. But now it's hidden well. 

As always the team who fitted it were brilliant. I'm sure you will be fine but totally understand your fears I was the same and almost backed out right up to the appointment. 

Sending my love, Jen xx

 

 

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Re: Paclitaxel buddies

Hi Angel Eyes,

My understanding the port are constructed to be placed at the right side. I had right sided mastectomy but by mistake both the port and the hose were placed at the right side when primary diagnosis.  The port/hose was removed after finishing my primary treatment.

And in the second time placement  last year they followed the same old route to put the port.

Attached are the pictures. In the right picture, you can locate the beginning of the tube at the left top corner besides the incision and the port at the left bottom corner. The tube is barely seen in between. (I hope I didn't misled you. I twisted my neck when I took the picture myself. The tube might look a bit 'popping out' ). Furthermore, there is no bruise around the port which seems in the picture.

 

IMG_0970.jpgIMG_0982.jpg

By the way, if one has cancer at the right, the port should be put on the left. It may not fit or look the same because the turns in the tubing are meant to go the other direction.

 

 

 

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Re: Paclitaxel buddies

Hi Jen, 

Thank you for your reply. 

Your port sounds about the best it can get. I've no idea what my hospital does so am grateful for all you ladies writing to me with advice.

Are you limited in movement now? Can you do housework? A few of my cats are heavy so worried won't be able to lift them. Do you have the modern PowerPort? If so, what brand?

Sorry for going on, 

 

Angel Eyes x

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Re: Paclitaxel buddies

Hi Alwayshope,

Thank you for your reply.

Yes, please - do post a photo of your port (I'm sure you can - I've seen pictures of hair loss and cold cap effectiveness on this site so don't think a port picture would be any different?)

Anyway, grateful if you could.

Are you able to move? Do housework? Sleep on your left side 🤔?

Thank you in advance, 

 

Angel Eyes x

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Re: Paclitaxel buddies

Hi Nicky, 

Thanks for your interjection. 

I've been having nightmares about this port. Seen some pictures on the Internet and read a lot of complaints from women who effectively say their port is like a hose attached to a Flash bottle... but Alwayshope and Jen have also given me a bit of reassurance.

Will I be able to move after the port insertion? Do housework? Sleep on my left side?

Thank you again, 

 

Angel Eyes x

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Re: Paclitaxel buddies

Morning all. I've just had a shower and thought I must reply to tell you about my port. I felt just like you Angel Eyes. I thought it would be very noticable. But it isn't. Its quite low in my chest, I wasnt given the choice of my arm. But its low, flat and now all you can see is a small line where the incision was. But I'd have to wear a very low top to see that. That's healed well with Aloe too. I do have the tube from my neck down to it. This was the sore part at first but now it's all settled too. 

So I'm really hoping it goes well for you. It's so easy for treatment.

Good to hear you are all doing well. Keep going, stay safe and stay positive ladies.

Lots of love Jen 💕

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Member

Re: Paclitaxel buddies

Hi Angel Eyes,

It is a small bulge on the inner side of my left arm. It is a bit swollen and bruised at the moment and has a dressing on, but I could photograph it for you next week when my stitches and dressing are removed? I am not sure if I can post a photo of it though? Nicky08 might be able to advise on this? You can see what it looks like then and decide. Having read Nicky’s post, she has had hers for a while, so I think that’s a good indicator of its usefulness. Take care xxx

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Community Champion

Re: Paclitaxel buddies

Hi Angel Eyes

Just jumping in here about the port. Some hospitals fit them on the arm (under the skin) and have done fir many years. A lot of others fit them in the chest, with the line (again under the skin) going straight up to the neck. It will depend on where your hospital prefers to fit them. I had a very old style port fitted fitted, not one of the newer, smaller power ports, so mine is visible but I disguise it with the right necklines etc. The newer ones, which my hospital started fitting soon after I’d had mine done are not visible. In fact the only benefit of mine is the chemo nurses don’t have to search for it, it’s staring them right in the face (!), whereas quite often they have to feel for the smaller ports, which means they are pretty well covered/located in the breast.

Maybe one of the ladies who’ve just had one fitted can put your mind at feast if you choose to have one.

Nicky x

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Member

Re: Paclitaxel buddies

Hi Alwayshope, 

That's helpful. 

I've finished my eighteen weeks of Paxlitaxel but my next line of treatment is Trastuzumab and Pertuzumab, unfortunately both by IV. The next treatment after that will be Kadcyla, again by IV (no respite). 

Don't really want a port. My veins held up until two treatments before the end of Paxlitaxel but it's either the port or a PICC Line from now on, (unless I choose to have Herceptin as a sub-cut alone but that's an inferior treatment - so can't go there). 

When you say the bulge is not too visable, do you mean if you sat next to someone in say, a choir, they would point or stare and say 'what's that?' Will you have to wear certain necklines/jewellery/sleeves to hide it? 

Thanks again, 

 

Angel Eyes x