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Paclitaxel buddies

Alwayshope08
Member

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

Alwayshope08
Member

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

Angel Eyes
Member

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

 

Bee3
Member

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

Alwayshope08
Member

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

Alwayshope08
Member

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

amyc
Member

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. 

Jennie60
Member

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 💕

 

 

Bee3
Member

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

Bee3
Member

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

Jennie60
Member

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

 

Bee3
Member

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

Alwayshope08
Member

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

Bee3
Member

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

Alwayshope08
Member

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

Bee3
Member

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

lovemama
Member

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.

IMG_0936.jpg

 

lovemama
Member

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...

Bee3
Member

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

Alwayshope08
Member

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

Jennie60
Member

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

Jennie60
Member

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 💕

Alwayshope08
Member

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

Susiewong
Member

Re: Paclitaxel buddies

Hi Bee

I'm not having Paclitaxel weekly but know how you feel. Don't beat yourself up.... I felt great for 3 days. From day 4 for a week I felt wretched. Aching in limbs, fuzzy feet, tingling in feet and hands. Swinging between constipation and diarrhea and severe fatigue. 

I forced myself out for 2 20 min walks every day. Slowly I began to feel better. Now I feel great again. My next chemo is 9th Sept. I understand the effect of chemo is cumulative... Rest if you need to. Try to have little walks every day. Eat healthy nutritious food. Drink lots of water. I'm sure it will pass.

You've got this... Be kind to yourself. These treatments are brutal. Xx

Bee3
Member

Re: Paclitaxel buddies

Hi All,

I have only had 2 lots of weekly paclitaxel so far. I missed out the second week as I was on antibiotics. This week is my week off. I am still feeling really lethargic and wondered if this will last throughout all my 18 sessions. Do things get better as your body gets used to this chemo or does the fatigue get worse? Also has anyone had paclitaxel every other week rather than for 3 weeks then a week off and if so did it work to reduce the cancer? 

It is a miserable day here in Sussex and matches how I'm feeling. I know many cope so well with paclitaxel and I was really hoping that I would cope well too but I'm not. I will continue though as I know it is effective. 

Sending you all love.

Bee xx

nicky08
Community Champion

Re: Paclitaxel buddies

Let’s hope so too!

By the way I just re-read my post and the stupid corrective text changed ‘taxane’ to ‘taxing’ , just in case you wondered what on earth I was writing about!

Nicky x

Bee3
Member

Re: Paclitaxel buddies

Hi Nicky,

Thanks so much for that advice. I shall do what you suggest next time. Hopefully I will have the same outcome as you.

Love Bee x

nicky08
Community Champion

Re: Paclitaxel buddies

Hi Bee3

Yes, I’ve had bad mouth ulcers, most notably on docetaxel, which is another taxing like pacitaxel. The one tip I got , from the forum, was to suck ice cubes or a lolly whilst the infusion was going in. It was explained that it works like the cold cap does on hair by freezing the lining of the mouth. I used one of the food/soup type of thermos flasks and poked it full of frozen cubes of cordial. I didn’t have another mouth ulcer so I’m assuming it at least helped. Another friend of mine on here has also said she has done this and not had mouth ulcers so it’s at least worth a try.

Nicky x

Bee3
Member

Re: Paclitaxel buddies

Good tip about the seatbelt and the positioning of the port. Thank you.

I have a very sore tongue and can hardly speak as it hurts to do so. Have any of you had this after chemo? Any tips gratefully received.

xx Bee

 

Bee3
Member

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

 

Jennie60
Member

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

 

nicky08
Community Champion

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

lovemama
Member

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

Bee3
Member

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

Bee3
Member

Re: Paclitaxel buddies

Hi Jen,

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

xx Bee

lovemama
Member

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

 

 

 

 

 

 

Angel Eyes
Member

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

 

Jennie60
Member

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

Bee3
Member

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

Jennie60
Member

Re: Paclitaxel buddies

Thank you first sharing. Looks interesting x

Jennie60
Member

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

 

nicky08
Community Champion

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

amyc
Member

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 

Bee3
Member

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

lovemama
Member

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.

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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.

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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.

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Jennie60
Member

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

nicky08
Community Champion

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

Susiewong
Member

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😊

Jennie60
Member

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