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Paclitaxel buddies

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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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Re: Paclitaxel buddies

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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Re: Paclitaxel buddies

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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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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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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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

 

 

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Re: Paclitaxel buddies

Hi Angel Eyes,

It was done using a local anaesthetic, which was fine. It takes slightly longer to fit than a PICC line, as they have to fit the port under your skin too, having made a pocket. Yes, I was nervous, but I can honestly say it was fine. We had a good chat about music and tv programmes whilst I was having it fitted and we had music playing in the background. It was very relaxed! The staff fit lots of these daily so you’re in safe hands and I am glad I made the decision to have it.

It’s a personal choice, but I would recommend have one fitted if you’re going to be having chemo on a regular basis. The “bulge” is not too big and it’s on the inside of my arm. Take care and keep me updated xxx

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Re: Paclitaxel buddies

Hope it goes well tomorrow Bee3. Looks like you are one week ahead of me, but my 3 treatments so far have whizzed by. Hope you feel like yours are whizzing by too. Take care everyone xxx

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Re: Paclitaxel buddies

Hello Alwayshope, 

I may have to have a port but not sure yet. 

Don't know if my hospital does it by local or general. If local, would you mind telling me how/what they do and what it looks like under the skin? (I imaging something throbbing like Alien 😏.) 

Thank you,

 

Angel Eyes x

 

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Re: Paclitaxel buddies

Hi Amy,

So pleased to hear your good news. As Alwayshope says it is what we are all hoping for. It is so good to hear how well you are doing. I shall be having treatment 4 tomorrow and feel so much better after the last lot of chemo than the first two lots. Really hope we all get positive results.

Thanks for your reassurance re the move back to Thursday. I am calm about it now! 

Glad to hear that your portacath 'fitting' went well Alwayshope and am amazed they used it straight away. Hope you find it so much easier and less stressful.

Thinking of you all and hoping side effects are minimal!

xx Bee

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Re: Paclitaxel buddies

Hi amyc,

What a boost that is! Fantastic results after only half your treatments. Made up for you. That’s what we are all striving for, light at the end of the tunnel! I am on treatment number 3 as we speak and I have to say the time is flying! 
Take care ladies and I hope the side effects are not too unpleasant for you all xxx

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Re: Paclitaxel buddies

Hello ladies, 

I think it is sometimes down to how busy they are Bee3. You get yourself into a routine don’t you and then something throws it out. I hope the treatment is being kind to you.

I’ve had my portacath fitted this morning and I am having my chemo as we speak using the port. My veins tend to hide, so I feel this is the best way of delivery my treatment. Staff who fitted it were amazing. Just chatted all the way through the procedure, which definitely helped. Take care ladies and Bee, I hope you adjust quickly to your new treatment day xxx

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Re: Paclitaxel buddies

Just wanted to pass on some good news - I had my halfway ct scan and the cancer in my lungs is ‘almost completely resolved’. The reduction to my breast lump is not quite as good, down by maybe 20%, so it looks like I may have surgery after finishing the 18 paclitaxel treatments. I will see the dr again in three weeks to keep an eye on it. 


My side effects have been pretty minimal so I’m feeling very grateful right now.

Fingers crossed for good results for everyone else. Just sat down for treatment number 9 now. 

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Re: Paclitaxel buddies

Hi Bee,

What a pain it is when plans change. This hasn't happened to me yet but often the unit is so busy appointments are late and waiting times long. The other day I left at 6.20pm. I was the last patient there.

It may only be on a Thursday for one week and then settle down. I hope so. 

Take care. Love Jen 💕

 

 

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Re: Paclitaxel buddies

Hi ,

I was phoned tonight at 8 to say that they had no capacity to give me chemo on Friday and I would have to come in on Thursday instead. The chemo nurses had told me my new day would be Friday as there had to be seven days in between the chemos but now suddenly they want me to come in after 6 days. Has anyone else had this. (I have chemo every week for 3 weeks then 1 week off) As I have a port I was phoned by an iv nurse earlier and an appointment made for me to give blood on Thursday. The person who phoned me tonight wants me to have bloods taken tomorrow. Anyway I said that I had got people to take me to my appointments and I would have to change all my arrangements. She then said that she would phone me back in the morning. 

I have heard of people having longer between doses but not shorter and was wondering if this had happened to you.

Thanks,

xx Bee

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Re: Paclitaxel buddies

Thanks Jen,

Haven't had any side effects this time apart from feeling very tired and losing most of my hair. Really hope you have excellent results from your next scan.

Good luck with your portacath fitting tomorrow Alwayshope. Hope it goes really well.

Wishing everyone good days with no side effects.

xx Bee

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Re: Paclitaxel buddies

Hi all

Good to hear you have a port now Bee, I agree it makes treatment so much easier and quicker. Mine has been a bit tender in between treatment but im told this is normal after its fitted for the first month or so.

I'm on my 7th treatment tomorrow and am also finding I get a day a week where I ache and then it goes. I've also had some bloating which my oncologist says is another side effect. But overall I feel it's going well. I have a scan next month. Really hoping to see good results as we all do. 

Wishing you all the best with trouble free treatment. Stay well and stay safe.

Jen 💕xx

 

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Re: Paclitaxel buddies

Hi Alwayshope,

Glad you managed to sleep last night. Hope your aches and yuckiness have gone today. 

I did suddenly remember about ice cubes and lollies when I was sitting in the chair yesterday and tried to hold cold water in my mouth! The chemo nurses also gave me a mouthwash so I am hoping my tongue will be ok this time. My sister got me anbesol teething gel recommended by a pharmacist which helped me.

Good luck with the port on Wednesday. I have only had it a few days but it made my chemo session so less stressful and it was so easy for them to use. I highly recommend them. 

All the best to you and hope all of us have few or no side effects to torment us today.

xx Bee

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Re: Paclitaxel buddies

Hi Bee3,

Sorry to hear that it’s given you a sore tongue. I can relate to that with previous treatments and it’s no fun!! I always found that ice lollies eased that, even in the Winter!! It’s worth a try!
My side effects kicked in a bit more last night (knew I’d spoken too soon!) and I felt yuk and achey. Just took myself off to bed with paracetamol and a hot water bottle and thankfully slept through. Seems to have lifted a bit this morning, so hoping that’s the worst of it for this cycle.

I am getting a portacath put in via local anaesthetic on Wednesday before my 3rd treatment. I am glad it’s easier with one, one less thing to worry about isn’t it! I’ve had issues in the past with my veins hiding, so this should make things so much easier.

Thank you for your response. A problem shared and all that.....take care. Sending my best to all of you and hoping the treatment is not too harsh xxx

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Re: Paclitaxel buddies

Hi Alwayshope,

It's great news that you are tolerating paclitaxel so well. Long may it continue to be kind to you. I had my third lot of it today.

So far I have felt very tired, most of my hair has fallen out and last time my tongue was really sore but as it gives such good results I can tolerate these.

I have a scan around every 12 weeks. My last one was 8 weeks ago. I haven't had a scan since starting on paclitaxel so it will be interesting to see what has happened. I am hoping for a good result as I hope this chemo will blast the cancer and make it go! The last scan I had showed that capecitabine wasn't working for me and some tumours had grown, but interestingly not the liver ones. I was then put onto paclitaxel. I have a video chat with my oncologist booked in for Friday and I am hoping he will book a scan for me. I think most people have scans every twelve weeks. 

I had the operation to put in my portacath on Tuesday and I had my chemo though it today. I would recommend getting one as it made it so much less stressful for me not worrying about them finding a suitable vein. Everything went through the port. It hurt for a split second when they put the needle into the port but that was it. I had mine put in under a general anaesthetic but I know some have had local. I will have bloods taken using it and also they can use it for the contrast in CT scans. (My chemo nurses have to put the needle in before the CT scan though as the CT scanners can't do it.)

Hope all our paclitaxel buddies are doing well and wishing you all the best.

xx Bee

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Re: Paclitaxel buddies

Hi everyone,

How is everyone getting on with their Paclitaxel treatment? I had my 2nd one on Wednesday and don’t feel too bad at the moment.  It’s rumbling away in the background, but I’ve managed to go for a short walk around the block. I then just rest at home for a bit. It may be that it kicks in a bit more later, but so far it’s doable. I am only on cycle 2 of 24 though, so I am not getting too carried away.

Does anybody know if they usually scan you halfway through your treatment plan or is it usually a shorter timescale to see if it’s doing what it should!!

I hope it is being kind to you all. Take care xxx

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Re: Paclitaxel buddies

Hi Lovemama,

This is interesting. Thank you for the links. It is interesting that weekly is just as good, and could have better results,  and is less toxic.

I was on antibiotics as I had a high temperature and they are always so cautious in A and E. 

Hope everyone is feeling ok today and few, preferably no, side effects.

xx Bee

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Re: Paclitaxel buddies

Hi, did you offer frozen gloves to protect your nails. Nail changes is one of docetaxol side effects and also paclitaxol. I asked for frozen gloves one time. However was told no more at that time and forgot to ask for it in subsequent cycles. Got white lines on nails.

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Re: Paclitaxel buddies

Hi Bee3,

I understand there are 4 dosing schedule of Paclitaxol. I was on dose dense in 2011 for my grade 3 primary treatment and on 3 weekly schedule for my SBC treatment. I wish I could be given weekly when started my SBC treatment in Oct 2018.

By the way, why you missed the second week and was on antibiotics.

(1) weekly - 90 mg/m2 once weekly for 3 weeks then  1 week rest ;

(2) weekly - once weekly for 2 weeks then  1 week rest;

(3) 3-weekly - 175 mg/m2;

(4) does dense - 175 mg/m2 1 week on , 1 week rest; 

Low-dose weekly administration of paclitaxel resulted in equal progression-free survival but reduced overall toxicity compared to every-2-week dose-dense

https://ascopost.com/News/4213

weekly taxol provides superior outcomes to treatment every 3 weeks  (27 Aug,2018)

https://news.cancerconnect.com/breast-cancer/weekly-paclitaxel-superior-to-less-frequent-dosing-in-m...

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Re: Paclitaxel buddies

Hi All,

Thanks Jen and Susie for your encouragement. I know paclitaxel is an excellent treatment with good results for many and so I am going to persevere. I think you are right about the anti sickness tablets which I have been taking 3 times a day for the past couple of weeks. I think they make me feel more tired so I'm going to stop taking them. I will start them again if I am sick. 

I am having my portacath fitted on Tuesday but I have my pre operation covid test tomorrow at the hospital. I hope I pass as I have built myself up for having it. I have chemo on Thursday and the specialist nurse thinks they will be able to use the port even though it will only be inserted a couple of days before. 

Hope you all have something to look forward to to keep your spirits up. Must think of something myself.

Love to all.

x Bee

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Re: Paclitaxel buddies

Hi All,

It’s really helpful reading all of these posts and seeing how you ladies are coping whilst on Paclitaxel. The previous chemo regimes in 2013 and 2017 have been 3 weekly cycles, but now it’s weekly cycles, which I am hoping I can tolerate better. Time will tell!

I am also opting for a port, as I’ll be having 24 weekly cycles of Paclitaxel...well 23 now! One done! I’ve had a PICC line before and liked the ease of it, but I’ve been told you can shower with a port (after it’s healed) and you don’t need it flushing every week. It will be flushed whilst I am having weekly treatment, but if I did get a break from chemo at some point, I’ve been told it doesn’t need flushing for a while.

Take care all xxx

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Re: Paclitaxel buddies

Forgot to say I was taking anti sickness meds which made me feel awful. The oncologist stopped these and I've felt better since. Worth thinking about x

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Re: Paclitaxel buddies

Hi all,

I'm on my 2and cycle. I've had 5 treatments,I missed one because I had a port fitted. No 6 is on Monday. I have weekly treatment without a break. I feel fine most of the time. A bit more tired than I used to but I manage to stay awake until about 10pm most nights. I feel bloated often in the evenings and feel the cold more. But otherwise ok. I was terrified of chemo so am pleased not to feel too bad. Hope your side effects get better. I realise mine may get worse, but try to take each day at a time. Love Jen 💕

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Re: Paclitaxel buddies

Hi Bee3,

I’ve found the right place to post now, so thank you and thanks Nicky08 for the advice yesterday. I am on day 3 of my first Paclitaxel cycle and feel like I have a hangover, but without the great night out last night xx