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Paclitaxel buddies

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Re: Paclitaxel buddies

Thanks for your reply MelMel. I think we all become needle phobic when medics have to hunt for a vein to use. We know what's coming. 

I have been told that before I have a CT scan I have to go to the chemo ward and they will put a special needle in the port which the CT scan people can then use for the contrast. I think I will ask for the numbing cream as I don't see why I should have to put up with any pain when the port is supposed to stop that. (Have never been stung before either!)

xx Bee

 

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Re: Paclitaxel buddies

Hi everyone 

Mine is a super port. It's quite flat and cant be seen apart from the scar which is fading now. A friend of mine with secondaries wrote to our hospital and complained about other departments not being trained in using ports and they have acted on this. A district nurse who called to change my dressing was very aware of them. She said they are the future as they protect veins. I hope fitting goes well and that like me you can begin to forget it's there. Love Jen x

 

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Re: Paclitaxel buddies

Hi Angel Eyes. Don’t worry I’m happy to help where and when I can.

As I’ve said I had mine done under Local Anaesthetic and a mild sedative - which just made me very talkative I seem to remember. It was  all done very quickly, no pain, and from what I remember a small dressing. I had to stay in the hospital for a few hours, maybe 4, because I’d had a sedative and obviously couldn’t drive home so hubby had accompanied me. I was given some painkillers to take but didn’t need them. I had a fairly standard port fitted in my chest on the right hand side because the surgeon wanted as straight a line leading up to the vein as possible as he said there were fewer problems with them if fitted like this. Unfortunately it isn’t  a power port as they are called in the UK which are the ones that allow dye to be injected for scans. Having said that at my hospital you still have to go to the chemo nurses to access the port as hardly any other departments are trained to use them (as lovemama has also said). So I still get cannula put in my (one useable) vein if I need contrast or just need bloods taken without the faff of going to the chemo ward to get the port used. My only, but big, annoyance is the siting of my port. It’s very prominent in my chest so much so that I have to be careful what sort of neckline I wear. I think this is only because I have an old style one and our hospital now uses much smaller ones. However it is situated right where my seatbelt goes across me when I’m driving. This was uncomfortable initially as the port area was a bit tender but I don’t notice it now. So my only advice would be make sure that where they say it is being sited you are happy with. If I’d realised I would have asked it to moved to a more fleshy part of my breast. Other than that it has been great and never been a problem in all the 7 or so years I’ve had it. It really has been the best thing I’ve had done as it eases all the stress of any IV treatment. Oh, and the only thing to remember is that if you come off IV treatments and it’s not used you do need to get it flushed , our hospital does it every 4-6 weeks, just protects against any blood clots. And I’ve never used any numbing cream, the skin doesn’t have any real nerve endings where mine it so it’s pretty pain free. Just a very slight scratch when they put the needle in (which is different from a cannula needle) then after that nothing.

Good luck and hope all goes well.

Nicky x

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Re: Paclitaxel buddies

Well, it hurts...feel more than bee sting. I am a needle phobia. Every time I sang my Phantom of Opera 😅😅😅. Remember a nurse asked me why. I told her my chest skin is much thicker than my hand skin... but... I felt less painful already as she didn't need to further search for the blood even after the needle was in. She starred at me with her eyes wide open😂😂😂

The numb cream did help but not every time. Per the instruction EMLA start to work 30 mins after applying to the skin. But, very often it was couple hours later when the nurse actually put the needle in the port.

The first few day as Jen said you may feel sore and tightness around the cut. Once you get used to it, you should forget its existence.

Though my super port allows the infusion of contrast dye & blood draw, blood draw I understand, I feel the blood technician is not very willing (or don't have the knowledge) to access the port due to additional procedures like flushing... 

A small rant...in last CT scan 3 unsuccessful attempts to put through the contrast. 2 at inner elbows, 1  in my arm 3-4 inches away from my wrist. She explained something like ??it is common their valves are closed when a person has a lot of chemo ?? Next time, I will insist to use the port. xx Melmel

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Re: Paclitaxel buddies

Hi Melmel,

My hospital only put the portacath in under a general. It is going to be one of the super ports so contrast can be put through. I am glad to hear that it doesn't hurt going through the skin to the port. Do you forget its there? I really hope so.

Thanks for replying.

xx Bee

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Re: Paclitaxel buddies

Hi Jen,

Thanks for letting me know. Sounds horrible but hopefully I will get used to it quickly.

xx Bee

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Re: Paclitaxel buddies

Hi Bee3, I think in general the portacath is installed under local anesthesia. I have had a portacath  installed 2 times. one was in 2011 when my primary diagnosis and which was taken out after completing  the 18 cycles of Herceptin. The second time was last year which is still in there. Both were done under local anesthesia and at the same place. Last year I received my first chemo after installation the next day. I am a needle phobia so was suggested the EMLA numb cream. I used it for few cycles and found I really don't need it. The process is much easier and always can be done in 1 go. After so many times of chemo,contrast dye, zolendronic acid, etc infusions, already see some very tiny dark dots on the skin ad think time to do a whitening mask 😁😁😁

Added: my BIOFLO port (or called chemo port)  is a type of the "super" ports "(what the chemo nurses call) which  supports the IV CT scans contrast dye. xx Melmel

 

 

 

 

 

 

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Re: Paclitaxel buddies

Hello Nicky,

I've got to have a portacath fitted and am dreading it.

No idea if my hospital performs it with a general or local. How long did the wound take to heal? Did you have to use massive dressings and waterproof tape at first?

Apparently, I've got to have the fitting next week ready for my last two Paxlitaxel beginning next Friday. As I'm HER-2 all my treatments are IV so I can't get out of it.

Can you feel a lump under the skin or the pipe? Is it used for bloods as well or just for pumping things in? 

Sorry to bother you again. I feel like I'm always picking your brains!

 

Angel Eyes x

 

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Re: Paclitaxel buddies

Hi Bee.

Good to hear you have sorted a date for the port fitting. I was told it needs to be 7 days before they can access it so you may have a little wait. I didn't have any numbing cream. They just injected a needle in and it was quick and easy to access and after. Hope the port fitting goes well. I have a tube from my clavicle to my port, all under my skin. That was sore and strange to begin but is fine now. I was unaware of this before fitting so thought I'd mention it. Take care. Jen xx

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Re: Paclitaxel buddies

Dear All,

I was happy to read your posts. It feels good that we are sharing how paclitaxel is affecting us and giving tips.

I had my chemo yesterday and luckily they got the cannula in first go but I had to put my hands in hot water for 5 minutes first. Because of the worry of it I was sweating and came over all queasy but the nurse said to take my mask off and take deep breaths and I was fine after a few minutes. Everything went smoothly and I left after 3 hours. Feeling tired today but otherwise fine.

I'm getting my portacath fitted on 8th Sept and due chemo on 10th. My hospital only put them in under a GA. I'm not sure my portacath will be useable 2 days after the operation? I read recently that to access the portacath they have to put the needle through the skin and the article suggested getting some numbing cream. Is this right? I thought that the port was easily accessed and not through skin! 

Wishing you all great results with this chemo.

Love to all,

Bee x

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Re: Paclitaxel buddies

Thank you first sharing. Looks interesting x

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Re: Paclitaxel buddies

Hi everyone, it's good to hear paclitaxel is being kind. I stopped taking the anti sickness tablets after chemo this week and the jittery feelings I was having have not reappeared. I haven't felt sick at all either so that's great. 

As Nicky said I didn't have a GA to have the port fitted. The procedure lasted for about half an hour. It wasnt painful but I did feel alot of pushing. I was well looked after and everything was explained throughout. I felt fine after it was done. It's a bit unusual to have this hard bump in my chest but I'm getting used to it now, it's not noticeable, I wouldnt put anyone off having it done. Its going to help in the long run I'm sure. I prefer it to a picc line for practical reasons. Its healing well and was accessed easily for chemo last Monday only a week after fitting. 

I'm still tolerating the cold cap. My hair is a little thinner but otherwise still there, but yes I expect to see hair on my pillow and worry when I wash it too. Dry shampoo is now my best friend. Especially the brown one which makes it look a little thicker.

It's great to compare and share ladies. Stay well. Keep in touch. Jen 💕xx

 

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Re: Paclitaxel buddies

Hi Bee

Although I’m not on pacitaxel I do read lots of posts/threads so thought I’d add my experience of portacaths. I had one fitted about 7 years ago and it’s the best thing I had done for my treatments. My veins were shot to pieces after FEC chemo so I totally understand the dread of the cannula being fitted. The port is so easy for the nurses to use as well, I found treatment time was overall quicker as I ‘hooked up’ far quicker with the port than I would have been with a cannula. I had mine put in with just a local anaesthetic and a mild sedative, no general anaesthetic needed. It will depend on what your local hospital recommends to do, I think most try to avoid GAs unless absolutely needed. Good luck with everything, hope the chemo continues to be well tolerated and the anti sickness tablets you’re now on keep working.

Nicky x

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Re: Paclitaxel buddies

Hello 

I just wanted to join in, if that’s ok. I’m having 18 weekly paclitaxel for TNBC with lung mets (diagnosed in July). I had session 6 yesterday so am a third of the way through now! I will have a scan in a couple of weeks to see how it’s working, which I’m now getting pretty nervous about. 

I had one session delayed due to a suspected infection but otherwise am doing really well on it so far. I had a bit of a bad tummy and a rash on my face at first but they both seem better now. I feel quite tired in the few days afterwards but nothing too drastic. 

I had an awful experience with the cannula Bee so I know how you feel. Hope it goes smoothly for you. I have a PiCC line now which I was very nervous about but it’s so much better.

I am doing the cold cap and although my hair is shedding quite a bit, it seems to be hanging in there. Keep expecting to wake up in the morning with a huge chunk on my pillow, but nothing too drastic so far. I dread washing it though. 

I think that’s all for now... hope everyone else is doing ok! 

Amy x 

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Re: Paclitaxel buddies

Hi Everyone,

So interesting to catch up on your posts as I have been on holiday for the past 6 days. I was especially interested in the anti sickness comments. I did take metoclopramide and still felt sick, or was sick,  so I stopped. Then I told various professionals that I was feeling nauseous  and they said I should take the metoclopramide 3 times a day to stop it, so I did. On the first day of my holiday I kept vomiting and spent the night rushing to the toilet. My sister, who is a nurse in Australia, suggested I use cyclizine which you can buy from any chemist in Australia. I phoned the chemo ward to see if it was OK to take this instead of the metoclopramide. They said yes but that it had to be prescribed and suggested I phoned 111. 111 were great and got a duty doctor to phone me. The doctor prescribed cyclizine and sent the prescription to the town I was staying in and I picked them up without a problem. I am no longer being or feeling sick and I can actually enjoy food. It is upsetting that the professionals don't suggest we change from metoclopramide to another anti sickness when we tell them that we are still being sick.

I am so pleased that you are all seem to be doing so well on the paclitaxel. I didn't feel bad afterwards either to the point that I wondered if they had even given me it and not something else! 🤔

I am having paclitaxel every week for 3 weeks then one week off and I finish in mid January. I am also having a portacath fitted in early September. Did you have a GA  Jen and how does it feel? Are you used to it yet? I couldn't bear the idea of a Picc line in my arm that jutted out and could be knocked.

I am having chemo tomorrow and dread them putting in the cannula as my veins are so tricky. Last time the nurse managed to do it first time but said there was also a place near the wrist she could try. I have had it there once before and it hurts. A lady sitting next to me had numbing cream that she put on before they searched for her vein but I haven't got this. Sorry to sound such a baby but I dread the cannula more than anything. 

Well done for your success with the cold cap Jen. I did try too but after 5 minutes I couldn't stand it and had to get it off as quickly as possible. There were two others with me at the same time who also managed to keep it on. I wish I could do it but I can't and have resigned myself to wigs. Last time I bought a wig that looked nice but this time I shall be going for comfort. 

I hope we can all continue to keep in touch via this thread as it feels so supportive. We all seem to be tolerating it well and hopefully it is doing its job. 

xx Bee

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Re: Paclitaxel buddies

Hi Jennie60,

Wonder if you were told to take the anti-nausea only when needed. I was prescribed 120 tablets (the patients to pay in Canada)  before I started Paclitaxel but I didn't need any.

IMG_0883.jpg

By reading the article posted on the BC Cancer agency of Canada Provincial Health Authorities website. I think you may not need it as well.

IMG_0884.jpg

I think you may want to discuss with your medical team regarding which med does suit you the best, just in case you feel nausea. Below information is extracted from the BC cancer agency website.

IMG_0885.jpg

 

 

 

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Re: Paclitaxel buddies

Hi Nicky 

Yes that's the one. Its good to know it's a side effect of that and not steroids. I will see how I get on without them but if I'm sick I will ask for the ones you recommend. The chemo nurses said it was the steroids and that I had to put up with it. I'm glad I mentioned it to the oncologist. Like you I try to double check things. Thanks for your reply. Always good to hear your views. Take care xx

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Re: Paclitaxel buddies

Hi jennie

i found out that one of the anti sickness tablets I was given caused me to have a bad reaction, like you have had, to them and when I read the ‘rare’ side effects it was listed. I was so spaced out and whereas I’d had the same tablets whilst on a chemo I needed them on I hadn’t noticed it as a side effect as I had so many other SEs and had thought it was the chemo. I’ll remember the name of them in a minute but it’s the one they usually give out (probably as it’s the cheapest). I now insist on domperidone or ondansetron. 
Have just looked up the name of the one that pretty much gave me a psychotic episode - metaclopromide. It was reading on this forum a post that described exactly how I was feeling that made me realise it was the anti nausea medication causing it, not the chemo.

Hope this helps
Nicky x

Nicky x

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Re: Paclitaxel buddies

Hi Bee, 

Thank you so much for your reply. Had my 1st chemo Wednesday. 

So far I feel fantastic. No side effects, no nausea, lots of energy... Very bizarre. Not what I was expecting at all. I know it's early days, so just taking it day by day. 

Keep well and safe.. Xx😊

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Re: Paclitaxel buddies

Hi all. Thought I'd share.... I've been having a jittery feeling after chemo which the nurses said was the steroids. But today on my oncologist phone call consultation I was told its probably the anti sickness pills. He suggested cut down on these or stop and all should be ok. I really hope so as it drives me crazy x

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Re: Paclitaxel buddies

Hi Bee 

It's good to hear you are coping well. I'm happy to buddy you too. Strength in numbers! 

I've had my first cycle of paclitaxel now. I'm having it for 12 weeks in total every Monday. This Monday I had a port a cath fitted so no treatment. I go again next week. I was terrified of iv chemo but have tolerated it well so far. I have worn the cold cap too. So far no hair loss. I have scarves and have been in touch with a company about a wig. I'd rather be ready.

Keep in touch. I hope you continue to cope well. Trouble is none of us really know for we? I'm staying positive until I have reason not to be.

Love Jen xx

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Re: Paclitaxel buddies

Hi Susie,

You will get through it and if it's not for you you can stop. I was dreading it as my consultant said that it was a chemo that expects a lot from the 'patient' and you had to be well to have it.

But I am feeling so much better today that I have been thinking that maybe they didn't give me the chemo but another dose of saline. My hair didn't fall out when I had a shower either so made me think I hadn't had it even more! So weird the way we constantly, or maybe it's just me, think things can't be right if you feel ok!

The cold cap was great when they put water on you hair and put in conditioner. (Bring your own if you don't want them to use the hospital one!) They will take off the cap immediately you can't bear it, but a lot of people do very well on it so it is well worth a go. I have two wigs and numerous hats from 2012. Might upgrade to a wig I can wear for longer without it being too uncomfortable!

Good luck for 19th. 

xx Bee

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Re: Paclitaxel buddies

Bee3, 

Lovely to hear from you. I'm so glad your session was OK and that you don't feel too bad. It has reassured me. I know we all may have a different experience but I'm trying to be positive and tell myself I'll get through it.. 

I wasn't going to try the cold cap... But maybe I should?

I have a wig and one headscarf so I'm kind of ready... What a Rollercoaster this is... Being on the cancer train.... 

Stay well and I'll check in after my first treatment on 19th.

Xx

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Paclitaxel buddies

Sorry Susie not Suzy!

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Re: Paclitaxel buddies

Sorry Susie not Suzy!

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Re: Paclitaxel buddies

Thanks Suzy, Would be good to share on this thread and hopefully others might join in too.

I had my first lot of paxlitaxel yesterday and apart from actually thinking it would only take an hour plus an extra two for the cold cap it actually went really well. My appointment was 11.30 but didn't actually leave until 5 and that was with tolerating the cold cap for only 5 minutes. I was hopeless. However the good news is that two others had the cold cap while I was sitting there and were absolutely fine.  Apparently if you can manage 15 minutes you can do the rest.

So today I am feeling good and actually better, no nausea, than before I had the paxlitaxel.  So a very positive first one. Phew!

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Re: Paclitaxel buddies

Hi

I'll be your buddy. I start chemo on 19th. Am having carboplatin and paclitaxel. Once every 3 weeks for 2 cycles then a scan. 

 

I am also doing the COC protocol, with lots of supplements added in. If you don't have it already, check out Jane Mclelland book How to Starve Cancer. It's a positive inspirational read. 

You can do this 👍

Best wishes

Susie x

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Thanks so much Angel Eyes. I hope I will be able to have the cold cap today after saying I wasn't going to! I am looking forward to getting the first paclitaxel ticked off and really hoping I will feel fine. I can put up with being tired it is just feeling nauseous that is such a problem for me. Good luck to all of you who are on the paclitaxel journey. I am inspired by you Angel Eyes. xx

 

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Re: Paclitaxel buddies

Hi, 

I too hate (God forbid) being perceived as a cancer victim so for me the cold cap was worth it.

Do what is right for you. 

 

Angel Eyes x

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Re: Paclitaxel buddies

Sorry about spelling mistakes. Can't see with these stupid glasses.

Angel Eyes

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Re: Paclitaxel buddies

Hi Bee, 

For quickness, I've Pm'd you.

I had an MRI today and get very nervous so that's really taken it out of me 😕. I think Paxlitaxel is better tolerated than it's sister drug, Docetaxel.

When I first started the Paxlitaxel in early May, I thought it would never end. I still feel like that. Fridays are a write- off, especially when I get my long treatment day with addutional Pertuzumab, Trastuzumab and six weekly Denosumab 🙁. I start at 9:00am on those days and finish at 5:30pm.

Speak soon, 

 

Angel Eyes x

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Hi Angel Eyes,

Thank you so much. That's really kind of you. You have done well nearly completing your therapy! (I always laugh when my consultant describes the treatment as therapy as makes it sound so desirable!) I hope the last 5 go quickly.

xx

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Re: Paclitaxel buddies

Hello, 

I'll buddy you.

I've nearly finished my Paxlitaxel (had thirteen out of eighteen so five to go.)

PM me and I'll talk you through.

Keep your chin up. 

 

Angel Eyes x

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Paclitaxel buddies

Hi All,

I was diagnosed with primary breast cancer after my 50th birthday mammogram in 2012. I had to have loads of lymph nodes taken out too. The cancer was ER positive and stage 3 so the timing of the mammogram was good!

At the end of May 2019 due to losing my voice I had a CT scan and was told the cancer had spread to my liver, and chest lymph nodes. It is also now in my spine. I tried abemaciclib with fulvestrant and then another one I have forgotten the name of but you need to have regular ECGs with it. I had to come off both after the tumours grew.

In January 2020 I started capecitabine which did well until my recent scan which showed the tumours in my lymph nodes had doubled to 20cm, the ones in my liver had increased in size and I had more spread in my spine. I have been off capecitabine for over 2 weeks and start paclitaxel tomorrow. My consultant says it will take the most out of me but should blast the tumours. I feel positive about it but had FEC-T in 2012 but only managed 2 out of the 3 taxotere before they stopped it. It did seem to clear the cancer though. Over the past two weeks I have felt constantly nauseous and have lost a lot of weight because I can't seem to eat much. Salmon and sweetcorn and rice krispies are about all I can manage. I feel sadness all the time too because of my 17 year old daughter. She is so positive and optimistic that I feel awful. I have turned into a shadow of my former self. I am finding it hard to carry on being positive all the time. My friends and relations say I am strong but it is all pretend. 

I am not usually feeling so down so please don't be put off me! I wondered if anyone else has had paclitaxel and what tips you can give. Or if you are having it do you want to be a buddy? I am having 12 lots of paclitaxel given over 3 weeks then one week off. I would be grateful too for advice on how to stop feeling nauseous. Thanks so much in advance.