Paclitaxel buddies

[Lancashire Lass]

Thanks Amy,

After a bit of research it turns out that Abraxane is slightly different to Paclitaxel, so maybe my worries that I’m being short changed are a bit premature! It’s all a bit of a minefield, isn’t it? Sometimes you’re being told to get as much information as possible, then you get information overload.

Thanks for the info about Facebook, which I don’t really like as it’s far too public but maybe I can go and just look without getting involved.

Good luck with your treatment too. Ask your team about Abraxane?

Lancashire Lass x

[amyc]

Hi Lancashire Lass,

I am triple negative too and I have found a couple of really useful Facebook groups with people discussing various treatments and side effects etc. Maybe worth a look? Let me know if you need pointing in the right direction - I think ‘stage 4 triple negative breast cancer’ is a good one to start with. 

I managed 13 paclitaxel last year and have now changed to capecitabine as well. Good luck with your treatment xxx 

Amy   

[Alwayshope08]

Hi Lancashire Lass,

I’d search triple negative as there will be other groups on here and people will be able to offer tips.

I wish you all the best and I hope your scan results are very positive. Take care xxx

[Lancashire Lass]

Thank you Alwayshope (love the name). I did ask my oncologist what happens next and she did say that if it was helping I’d probably be offered two more cycles and that after that there were other options. Just have to wait and see (so much waiting!) I’ll check out the socks.
My cancer is triple negative which seems to be very different to the breast cancers that test positive. Is there anybody else on this particular forum dealing with this?

Thanks 

[Alwayshope08]

Hi Lancashire Lass,

Every Paclitaxel schedule is different depending on what they can see on the scans. I was told that I was having 24 treatments initially, but then because it was working they just carried on with it. I am presuming you’ll be the same? They’ll review your scans and you may well stay on it whilst it’s being effective. I managed 39 weekly treatments, but have now switched to Capecitabine as I had some lymph nodes which are growing (liver seems stable). I’ve only just started on the tablets and I am really tired, but just ploughing on and hoping that improves when my body adjusts to the new medication.

I used some cooling foot socks whilst having Paclitaxel treatment and this did help. You can buy them from Amazon for £20. My peripheral neuropathy wasn’t quite as bad afterwards.

I’ve heard stereotactic radio surgery  is very effective, so that should zap the little nuisance!

Once you settle into your new routine your body will adjust. Wishing you all the best with your treatment. Take care xx

[Lancashire Lass]

Hi,

I’m new here and not sure how it all works. Diagnosed in April with SBC in lungs and liver and started on Abraxane (Paclitaxel) in June for 6 cycles. Reading previous posts I am alarmed to see how many cycles other ladies have had. Am I being short changed? I have had a CT scan at the halfway stage but won’t get the results until next week. The first cycle was dire. Severe joint pains, severe heart burn, peripheral neuropathy, gritty eyes and complete constipation! The one side effect I was expecting and for which I’d been given medication ie nausea, I didn’t get, thank God. On hearing this my oncologist reduced the dose by 100grams and the last two cycles haven’t been too bad although no real improvement in peripheral neuropathy. The first two weeks after chemo are the worst but by week three I feel more or less normal.

To add to my troubles an MRI to my head turned up a tiny brain met 5mm. So in 10 days I will be having stereotactic radiosurgery to zap it. Worst part of this is I have to surrender my driving licence even though I have no symptoms and probably never will. The next month promises to be a hard one!

What a way to introduce myself. Sounds like a real moan but for reasons I can’t fathom I am much more positive and optimistic this time than when I had my first diagnosis in 2007.

I’m glad I found this forum as I too need some “bosom buddies” with the same problems as me and I’ve already learnt so much from reading previous posts. Thank you ladies

[Jennie60]

Hi I'm happy to speak to new people  I was just confused the message was meant for me

 I'm sure you sent it with best intentions. It just threw me a bit in what's been a sensitive week

 Hope your treatment is going well

 Jen x

[lovemama]

Sorry, Jennie60. we have never spoken to each other.

I really misunderstood. When I saw your post it just made me to think about myself I couple times hid my symptoms and afraid my onco would delay or even stop my treatment.

sorry !!

[Jennie60]

Hi Alwayshope, hope all is going to plan with you.

I had a lovely chat with my oncologist the other day. He's happy to reduce my dose if I want  but as this wont improve neurothapy I said maybe I'd just carry on for the min. Achipuncture is only slightly helping and is so expensive I'm wondering if its worth it

.Take care, enjoy the sunshine 🥰

 Love jen xx

.

 I

[Jennie60]

Hi lovemama 

I'm not sure this message was meant for me. I'm a bit confused by it!

 Have we ever spoken?

Anyway I can assure you I know how professional  the amazing oncology team are. They look after me very well and I share my concerns with them

Jen

[lovemama]

Hi Jennie60,

For your information. Just want to say to let your oncologist knows. They are the professional.

http://www.bccancer.bc.ca/drug-database-site/Drug%20Index/Capecitabine_handout.pdf

http://www.bccancer.bc.ca/drug-database-site/Drug%20Index/Capecitabine_monograph.pdf

[Alwayshope08]

Hi Jen,

Being with friends and family definitely helps. We need to do that as much as possible!

The acupuncture will hopefully work for you and I am glad you have felt some release already. Sorry to hear you’ve got a fungal infection. I had an infection in a toe on my right foot and did an econsult. Prescribed cream and antibiotics and was better within 3 days. Not sure if you’ve got anything for it? It definitely did the trick for me and sorted my toe out.

You must mention the side effects to them as they might be able to reduce the dose. Don’t suffer in silence. I am on Paclitaxel until either it stops being effective or the side effects are too much.

Lovely to hear from you Jen. Please take care and let me know how you’re getting on 💕xx

[Jennie60]

Hi Alwayshope, thanks for your quick reply. I find when I'm with friends and particularly my granddaughter's I feel better. Glad that works for you too! I have had one appointment for acupuncture and and felt some release in my ankle. My left leg is worse and I have fungal infection in my big toe. So can be painful. I have an oncology call on Friday and I'm going to mention the side effects to them but i don't want to jeopardize my treatment as so far it's worked. I  really hope you have have a good meeting with your new oncologist and that your treatment is going well. Are you still on paclitaxel? You have done brilliantly to keep going on that. Sending you lots of love and positive vibes. Take care  love Jenx💕

[Alwayshope08]

Hi Jen,

Lovely to hear from you. Sorry to hear you are struggling with the side effects. It’s no fun is it. I felt really low last Friday with it all, but then seeing family and friends in the fresh air really lifted my mood and my neuropathy had eased slightly by the Monday. Have you tried the acupuncture yet? Let me know what you think of it.

I see my new Consultant today, so hoping that goes well. Take care. Sending love and positive wishes xxx

[Jennie60]

Hi all haven't been on here for a bit  couldn't seem to log on! Anyway succeeded now. Hope you are all ok. I'm really struggling with side effects of capecitabine and previous paclitaxol too. Neurothapy and hand and foot syndrome. Sore, sore hands. Numb feet, one is very red. Watery eyes and everything tastes salty. A real nuisance to be honest. But if it's working on the cancer I'm sticking with it all. 

Oh well that's my moan over. Hope you are all ok. Love Jen xx

[Bee3]

Hi Alwayshope,

I can't believe that you are on treatment number 27 of Paclitaxel. You are amazing.  So pleased that it is still working for you.

All the best,

Love Bee xx

[Bee3]

Hi Jen,

Really delighted to read how well you are doing on capecitabine. It is so good to hear positive news.

I hope that your neuropathy is not bringing you down and wish there was something I could suggest to help. Controlling the cancer is the most important thing but it makes life hard when the side effects are hellish. 

Thinking of you and wishing you nothing but the best.

Love Bee xx

[Alwayshope08]

Hi Jen,

I think it’s good to share good news as it gives us all hope. I always get a boost when I see that treatment is working for people.

I was aching a lot when I had the 4 week break and I was more aware of my neuropathy, although there has been an improvement. I would consider acupuncture, so let me know how you get on. I hope it provides some relief for you. Take care. Sending love and best wishes xxx

[Jennie60]

Hi Alwayshope,

Thank you for your reply, I'm always a bit worried about sharing good news incase others arn't doing so well, but I'm relieved the new meds are working so far.

Wow 27 Paclitaxol seems alot, hope you are coping with it, it's good the neurothapy is a bit better,you are doing so well.All those ice packs obviously worked. I didn't use them enough and am paying the price now! My feet are quite numb and my fingers too. The GP says it may not get much better, I read achipuncture may help so ive booked myself an appointment next week. Not NHS I will pay for it, worth a try I think. 

Take good care of yourself and all the lovely ladies on here. Love Jen x

[Alwayshope08]

Hi Jen,

Lovely to hear from you. Absolutely thrilled for you and your fantastic scan results 😊that’s brilliant news! I am glad you enjoyed a glass of wine, you’ve earned it!

The neuropathy is a complete nuisance. I am hoping with time it will subside for you. Mine is still there, but it’s not as bad as it was. It will be treatment number 27 of Paclitaxel on Wednesday (albeit with a 4 week break after number 24).

Take care and enjoy your great scan results. Sending positive thoughts your way xxx

[Jennie60]

Hi ladies, hope you are all ok, side effect free and looking forward to the lifting of covid restrictions. 

I have good news to share. First scan on capecitabine showed liver mets were smaller and otherwise stable lungs. So relieved as new meds and a break of 6 weeks previously was worrying. Phew! A glass of wine was enjoyed!

I'm still struggling on with neuropathy but that won't kill me, controlling the cancer is the most important thing. 

So moving on, staying positive and hopeful. Love to you all. Jen xx

[Alwayshope08]

Hi Bee,

Lovely to hear from you. I am obviously not the only one then. I think it would be different if we were private patients. However, I remain grateful that the drug is working and I still feel well enough to function. I was just disappointed that I was forgotten about and had to flag up the fact that I was now in limbo with no news about what was planned next.

I start Paclitaxel again today. Now in the right frame of mind to go again.

I hope you are feeling well Bee and the side effects are not too bad. I am sending you positive thoughts and love and hope you have great scan results when your scan is due. Take care xxx

[Alwayshope08]

Hi Jen,

Lovely to hear from you. Has your neuropathy improved at all? There has been a slight improvement with mine, but it is still there and now there is more Paclitaxel to come, so thinking I might have to reduce the dose again to complete the 12 weeks. Nevertheless, I am very grateful for the work Paclitaxel has done. I start treatment today.

I am glad you are tolerating your new treatment well and I feel very hopeful that you will have great scan results 😊

I am not one to usually post negative comments, but my last post was down to sheer frustration at just being left. I can’t plan my own treatment, so what was I to do?

Onwards and upwards now. Sending you positive thoughts and love and wishing you well for next week. Take care xxx

[Bee3]

Hi Alwayshope, 

I am very pleased that Paclitaxel has worked so well for you and that you will be able to continue on it. That is great news. I am sorry that you have had a 4 week gap and had to chase to make things happen.

I have had similar issues to you with my treatment. My Consultant says things like 'I want to see you again in two weeks', or 'you will go onto this new treatment next week' and then I am unable to get an appointment. The consultants have the power, not us and they should be responsible. Like you I have learnt that I need to be proactive and on top of appointments or I might end up with nothing. 

I do understand that if the consultant says I will start a new treatment 'next week' there truly might not be a space but then he shouldn't say it, as I take what he says at face value. I have had to 'fight' my corner several times and when you feel vulnerable it is hard. Your consultant was probably thinking aloud when he said that you should not have stopped treatment, but he shouldn't have said it as its only impact would be to worry you. I agree that it was up to him to make the appointments and that you should not have to chase but unfortunately we need to continue to be proactive. I often wonder what will happen when I become too ill to keep an eye on things.

 Wishing you all the very best.

xx Bee

[Jennie60]

Hi Alwayshope, 

Finally I'm able to reply to your message. I've had trouble with my password. Probably my fault, my fingers don't work well with neuropathy!

I'm so pleased you are responding well to the paclitaxol and hope you feel ok about continuing. 

I know how you feel about a delay in treatment. My treatment was delayed by 6 weeks and it was a really worrying time. I'm surprised your consultant said it shouldn't have stopped. If they dont know, who does? I have had to chase up a few things. But all in all pretty good. I expect you are back on paclitaxol now and hope you tolerate the treatment for the 12 weeks without side effects. It's worked well so far, so hopefully you will have good news again on the next scan. 

My scan is next week, first since capecitabine. I'm tolerating treatment well so hope it's shrinking the little devils. 

Take care, stay positive and enjoy  the sunshine. Lots of love Jen x

[Alwayshope08]

Hi Ladies, 

I found out today that I start Paclitaxel again next week. The Consultant said that it is working so they would like to carry on for another 12 weeks. There was just one new small lymph node that had appeared on the last scan, but everything else has shrunk as I was informed last week.
As of next week I will have had a 4 week break. This break is only because there was no plan in place and if I hadn’t chased it up, it would have been longer than 4 weeks. The Consultant said I shouldn’t have just stopped treatment, but who do I speak to about that, surely it is the Consultant’s job to arrange that what happens after the planned 24 weeks.  I feel like I’ve just been left and if I hadn’t followed it up, how many weeks would it have been before treatment started again? I wondered if anybody else has had a similar experience like this? I constantly have to chase things and have lost a bit of faith in them to be honest. Not one to go on, but this is a recurring theme. Hope you’re all well ladies and your side effects are minimal xx

[amyc]

Fantastic news! 🥳🥳🥳

[Bee3]

Hi Alwayshope,

I was delighted to read that you have had positive scan results. What brilliant news. I am really pleased the Paclitaxel worked so well. You must feel elated and I hope you have lots of lovely things planned to celebrate over the weekend. 

Hope your toe is fully recovered.

Take care.

Love Bee xx

[Bee3]

Hi Jen,

I am pleased that you are coping well on Capecitabine. It's great news that you had good blood results after the first cycle and I hope it continues to work its magic.

Hope your side effects improve as you get going. My hospital used to give me cream for my hands and feet which I found really helped. 

Wishing you a lovely weekend.

All the best,

Bee xx

[Jennie60]

Hi Alwayshope,

WHOOP WHOOP congratulations on your scan results! 🥳 I've been thinking about you but didn't like to ask. Your perseverance on paclitaxol has paid off, well done you. Such a relief for you and your family. Hope you enjoy a good celebration. You deserve it. 

Lots of love, take care. Jen 💕 xx

[Alwayshope08]

Hi Jen,

I am glad you’re coping well on cape and had good blood results. I am also happy to hear that you’ve had good blood results 😊 I hope your hands and feet improve once you settle into your new routine. re. the neuropathy, it does linger doesn’t it. Mine is not as bad as it was, but it is still here. I find heat and keeping active helps it. I’ve had a toe infection, but it’s clearing up nicely now with antibiotics and cream.

I wanted to share my positive scan results with you all. I found out today that all the nasties have shrunk, (all bar one lymph node). My liver lesion has shrunk by half and there has been significant reduction in my abdomen, so much so they haven’t measured it. All other lymph nodes have shrunk too, so I am very relieved. Not sure what treatment is next, but for now I am thankful that Paclitaxel has helped.

I hope you are all doing ok and that treatment side effects are minimal. I think of you all often, even if I don’t post every week. Sending love and best wishes xxx

[Jennie60]

Hi Alwayshope,

Thanks for your reply, I'm coping well on capecitabine. Had good blood results after first cycle, long may that continue, I'm just finishing the 2nd cycle this week.

Side effects are dry mouth and sore hands and feet. At first I was blaming neuropathy as this is still a problem but its changed to very red hands, some peeling skin and red feet. A common side effect of capecitabine apparently. But otherwise going well and hope it's working!

 You did really well staying on paclitaxol so long. Hows your neuropathy? Hope you are feeling well and positive. It's difficult sometimes with covid added on!

Take care, stay safe. Love Jen xx

[Jennie60]

Hi Alwayshope,

Thanks for your reply. I'm coping with capecitabine well. I had good blood test after first cycle and am just on end of second cycle this week. Side effects are sore hands and feet

[Alwayshope08]

Hi Jen,

I hope you are still feeling ok on your new treatment and there are limited side effects. 
Take care. Sending love and positive thoughts to you xxx

[Jennie60]

Hi Amy it's good to hear your latest scan is looking better than last time. Hopefully the full report will be even better and you can continue on the treatment. Look after yourself, stay well and stay safe. Love Jen x

[Jennie60]

Hi Alwayshope, so pleased to hear your news. I'm sure when the full report comes in it will show good things. You have done so well continuing with Paclitaxol and tolerating side effects. Stay positive and safe. Lots of love Jen x

[Alwayshope08]

Hi Amy,

That’s great news for you too. Very happy to hear that and I bet you are too 😊

I had my CT scan last Wednesday. I am waiting for the full report too, but have been told by the nurse that it looks ok to her and there has been some response to treatment. 

Take care ladies. Fantastic results for you all. Very pleasing to hear. 😊xxx

[Bee3]

Hi Alwayshope and Amy,

Thank you for your lovely messages. ,

I am so pleased that you have been given good news too Amy. 'Much better' than the last scan seems very positive. 😀 Such a huge relief.

Love to you and all,

Bee xx

[amyc]

Brilliant news Bee, I am so happy for you! 

I had a scan yesterday and haven’t had the full report yet, but I spoke to a nurse this morning who said that (according to the consultant) things are looking ‘much better’ than the last scan 😊

[Alwayshope08]

Hi Bee,

I’ve just read your post and I am absolutely delighted for you. What a fantastic result that is. Sounds like you are tolerating it well too. I bet you feel so relieved and happy. What lovely news to read. Gives us all a boost 😊

Sending love to you and all the ladies on here xxx

[Bee3]

Hi Jen,

Thanks so much for your reply. I was over the moon and my daughter and I went to M and S and bought lots of treats. My son and daughter treated me to a take away on Saturday too. My daughter burst into tears when I told her my results which made me feel sad as it made me realise how much stress our loved ones feel as they hope we will be ok. and any good news is such a relief. Poor things. I really try to hide any anxiety too. It's a rotten disease! Thank goodness treatments can work well.

Wishing you all the very best and hope that your meds work their magic too.

Much love,

Bee xx

[Jennie60]

Hi Bee

Congratulations on your CT scan results. Hope you had a fantastic celebration weekend with your family. Such a relief for you all.

Take care, enjoy the milder weather and stay safe. Hope the meds continue to work their magic. 

Lots of love Jen 💕xx

[Bee3]

Hi All,

Hope you are having a good day. I am pleased it is getting a bit warmer. Actually enjoyed my walk today!

I had some very good news on Friday. My CT scan showed a reduction in the size of my tumours so my new treatment is working. I am so happy. 

Wishing you all a great week.

All the best,

xx Bee

[Bee3]

Hi Jen,

Lovely to hear from you. I am so pleased to hear that your new treatment on Capecitabine is going well. Hope you continue to get no side effects. I know from the Capecitabine thread that some people do well on Cape  for years so I hope that this is true for you.

I agree that having the vaccine makes me feel a little safer. Though I still wear a mask and steer clear of people when I walk my dogs! They give me a wide berth usually when they see my little hat, the sign of a 'cancer patient'! 

Take care.

All the best.

xx Bee

[Bee3]

Hi Jen,

Lovely to hear from you. I am so pleased to hear that your new treatment on Capecitabine is going well. Hope you continue to get no side effects. I know from the Capecitabine thread that some people do well on Cape  for years so I hope that this is true for you.

I agree that having the vaccine makes me feel a little safer. Though I still wear a mask and steer clear of people when I walk my dogs! They give me a wide berth usually when they see my little hat, the sign of a 'cancer patient'! 

Take care.

All the best.

xx Bee

[Bee3]

Hi Amy,

I am pleased to hear that you are doing OK. It is so good when a treatment is manageable and I really hope that your scan is a very positive one. 

I too am looking forward to better weather and the end of the lockdown. The brighter evenings have been a boost but I hate this freezing weather. I am leaving my heating on all night tonight. I am terrified my pipes will freeze. A plumber put an outside tap in for me in the summer and said I had to turn this handle under the sink to prevent my pipes freezing. I don't know whether I am supposed to turn it to the left or right so have done nothing! If he hadn't have said anything I wouldn't worry so I wish he hadn't!

Wishing you all the best and a happy week.

xx Bee

[Bee3]

Hi Alwayshope,

Lovely to hear from you. I can't believe that it's your last Paclitaxel today. You have done really well and I hope that your CT scan will be very positive and show it has blasted the dreaded cancer.

I had my CT scan on Monday and will get the results at the end of this week. I am happy on my new treatment so I really hope it's working. 

Hopefully you will be able to put all thoughts of the scan result out of your head and enjoy a fabulous half term with your daughter. My daughter will be studying at half term as she has mock A levels the week after. I think the teachers will use these results to give them their grades so the pressure is on. 

I have been reading a good book that a friend lent me that I would never have chosen. It's called Where the Crawdad's Sing and is worth a read. 

Take care and wishing you the best news on your results day and a lovely half term.

xx Bee

[Jennie60]

Hi All, 

I'm glad to hear you are all doing ok. Hope your scans go well, always a tricky time, I'm sending you all very positive vibes 💕

My new treatment on capecitabine is going well, just started cycle 2. No side effects as yet and good blood results last week. I had my vaccine last week, just makes us all feel I little safer I think. 

Take care ladies, thinking about you. Stay safe and positive. Love Jen xx

[amyc]

Hi everyone

Good to hear the updates. I’m doing ok, finding my new treatment pretty manageable but have my first scan next week so that will be the real test. Very much looking forward to some better weather and a bit more freedom! 

Take care 

[Alwayshope08]

Hi Bee,

I’ve not been on here for a while either. Hope you’re doing ok and glad you’ve had your Covid vaccination. I had mine on Monday and apart from slight aching, I feel fine. It’s my last Paclitaxel today and I have my CT scan before treatment too. Hoping it’s done something positive!

It’s half term next week, so looking forward to a week off with our Daughter and some positive news re scan.

I hope your treatment is going well and your side effects are not too bad.

Jen and Amy, I hope you’re doing ok too and your side effects are manageable. Take care all. Love to you all xxx

[Bee3]

Just thinking of you all and hope that your treatments are going well and side effects are manageable. I was just reading another thread and it makes me really appreciate how positive we are despite our trying circumstances. I had my Covid vaccination on Saturday and it wasn't as bad as I thought. Hopefully we will be able to live a more normal life soon so we can make the most of it. I am so done with lockdowns now! 

Wishing you all the best.

Love Bee x