Breast Cancer Now Forum

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

Hi Everyone, It is so good to hear from you. I am sorry that you are getting stomach pains Jen as it wears you down but hopefully your scan results will show having paclitaxel has been worth it. I am very positive for you. I would only want a break from treatment after I have had my final load of paclitaxel (which will be mid January) and a scan that shows greatly reduced tumours, or none! Otherwise I think we have to accept that we are on the treatment treadmill. I think your idea of a break over Christmas sounds good Sticks and if you have a really positive scan and are finishing with paclitaxel then I think it is a question worth asking.  Love to all, Bee x ... View more

Hi Jen,  Many congratulation.Enjoy those lovely cuddles and the smell of a new born. I am so pleased for you and glad to hear mum and daughter are both doing so well. I feel hopeful and positive that all of us will be going strong for many years to come so tell any doubts to leave you alone. Glad you saw some tiger Alwayshope! Love and wishing the best to you all, Bee xx ... View more

Hi Alwayshope, Thanks so much for your reply. Hope you have a lovely time with the lions! Sounds fun. It is very unsettling to be told one thing and then another isn't it as then you begin to doubt everything you are told. I am sure I was told that my neuts were 0.5 but my breast care nurse said 0.9 which I feel isn't too bad. I have some nurses who will tell me my tumour markers and some who won't as they feel the consultant should tell me. I know there is someone on the forums who always asks for her blood test results but I think my team would be shocked if I did. I phoned to ask the time of my appointment next Thursday as I have to make arrangements with the iv team to come and take blood through my port. They say they are fully booked on Thursday so will let me know on Monday. In the meantime I had a call from my breast care nurse to chat but she did mention that even if I didn't have chemo for a couple of weeks it wouldn't matter and would give me a chance to improve. So I guess there will still be no appointment for me when I am phoned on Monday. It will mean that I can stick to all the dates I have been given until mid January so that's good. Also I have booked to go to The Ivy next Saturday and before that have a look in some jewellery shops for my daughter's 18th birthday present. So I shall be happy now if I keep my free week this week.   The nurse did talk through some of my worries. She said that I should ask my consultant if I have at least two years as he can always say he hasn't a clue if necessary. So I shall. I am also going to ask that if paclitaxel works well and makes the tumours go do I go straight onto another treatment or can I have 6 months off? I really want to have some time where I feel like I used to. Probably wishful thinking but hope not. Sunday lunch is on as everyone is looking forward to it so I hadn't got the heart to cancel. Hope I don't regret it. Hope you have a lovely weekend too. xx Bee   ... View more

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 ... View more

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   ... View more

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 ... View more

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 ... View more

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 ... View more

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 ... View more

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 ... View more

Hi Amy, I haven't experienced this but I think its good that you will be seeing your oncologist next week. As you mentioned it to him/her a few weeks ago it was obviously concerning you and he should have looked then. But my oncologist is quite similar in that he is very keen to talk about treatments but obviously feels it is up to the chemo nurses to deal with the side effects and isn't interested if I mention anything.  Try not to worry and just make sure he does look. Could talking to your nurse on Monday help bring your appointment forward? Wishing you all the best. Bee x ... View more

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 ... View more

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 ... View more

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 ... View more

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 ... View more

Hi Alwayshope, I am more or less exactly where you are with the paclitaxel. Please could you join in under the Paclitaxel Buddies thread so we can all stay together. If you read that thread you will see that most cope well with the paclitaxel and it is doable. After only two doses I have had problems with sickness and fatigue which I found/ am finding difficult but I'm inspired by others who have posted and am hoping things will improve for me. I hope you have minimal side effects. There is some great advice on how to minimise them. Wishing you all the best, Bee x ... View more

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 ... View more

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 ... View more

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   ... View more