Breast Cancer Now Forum

Hi Daisy, I'm so sorry to read what an awful time you are going through. I was diagnosed with SBC in February. Although I am very happy with my onc, I wanted to get a 2nd opinion just to double check that there aren't different treatment options available to me. I don't know if it is the same in all cases, but my onc wrote to the specialist for me regarding another opinion. I was a bit worried that she'd be offended me doing this, but she said it was quite usual and actually recommended the specialist to me. I am going to see this specialist privately, but I think you probably have to contact your onc/specialist and ask them to refer you. Jencat xx ... View more

Hope chemo goes well for you today Jennie x Yes, I have tried the cold cap when I had FEC-T in Oct'17. Unfortunately it didn't work for me and I discontinued it after finishing FEC. I don't regret using it though because it enabled me to still have my hair until after Christmas and it also gave me time to adjust to losing it, which was something I found hard to deal with when I was told that I would need chemo. I haven't used the cold cap this time, I wasn't sure if it was even an option because of the COVID situation and also I didn't want to add to extra time at the unit as the chemo is weekly and also because it hadn't worked last time. The cap is very cold to wear, but if you can get past the first 10-15 minutes you don't notice the cold too much and it's doable. Hopefully it will work well for you. I meant to say, a couple of other side effects of Paclitaxel I get is a bit of a loose tummy and also flushed cheeks and the top of my chest for a couple of days, but my temperature has been normal, so not a cause for concern.  Love, Jencat xx   ... View more

Hi Jennie, I'm having similar treatment to you-3 weeks on/1 off. Originally it was to be 9 rounds, but because I've responded so well, my oncologist has increased it to 18. My breast lump is on the surface and was causing me problems and I was in quite a lot of pain prior to going on this chemo, to the point where my SBC nurse had suggested referring me to the hospice for pain relief, now I'm just taking the odd paracetamol! I could see a visible difference in my lump after 2 rounds, not even a complete cycle! My oncologist was thrilled at the difference when I saw her a couple of weeks ago, tbh I think she was surprised and doesn't want to see me again for a couple of months unless I've got any problems. I have got a few small mets in my lungs, so hopefully it's working well on those too, I think my oncologist is fairly confident as she doesn't feel I need a scan again yet. The side effects of Paclitaxel aren't too bad because of the smaller dosage, my main one seems to be tiredness for several days, not helped by having steroids before the chemo and then a couple of days afterwards. I find I can't sleep on the day I have the chemo and it takes me a while to sort out my sleep pattern again! I also find a need a nap some days, but I'm nearly 61, so it could be partly down to my age! I have got some neuropathy in my fingers and toes, but I'd still got that from when I had chemo in Oct'17. The downside of Paciltaxel is having to go to the hospital twice a week to have the chemo, bloods and line flush and also having to have chemo weekly and not allowed anyone with me, which I'm finding harder as the time has gone on, probably not helped because I'm only half way through now, but if it works, then it's worth it! One thing, I don't know if you've been told is that you have to have pre-meds before the chemo infusion, so it takes a bit longer than my oncologist had told me. One of the pre-meds is an antihistamine, which I found made made me feel really drowsy and not a good combination with the IV steroids! I enquired about the dosage a few weeks ago and discovered although I was only having a third of the Paciltaxel at each round, I was being given a full dose of the antihistamine! My oncologist was happy to reduce this to half and if I had no reaction whilst having chemo, to stop it altogether (I think she said it comes under The Royal Marsden guidance) and so far I've been fine without it. Hope it goes well for you tomorrow, Jencat x ... View more

Hi Amy, I'm so sorry to read about your diagnosis, I am in a similar situation to you. I was diagnosed with bc in June'17, Stage 2 and TN and had chemo the same time as the lovely Shi. Unfortunately my bc returned at the end of last year and I've now been diagnosed with SBC in my sternum (a 'nibble' I was told!) and whilst on Carboplatin, some spots showed up on my lungs. My onc suggested I went on weekly Paclitaxel as I'd responded well to Docitaxel in 2018. I'm having it 3 weeks on, 1 off. I'm finding the side effects ok, but I do find I'm tired and a bit weak for a few days afterwards, probably not helped by the steroids you have for a few days afterwards and that I'm nearly 61! It's also a bit of a pain having to go to the hospital a couple of times a week for the chemo and the blood test a day or two beforehand. On a positive note though, so far I've had a good response from Paclitaxel. My breast lump is external and I've had problems and a lot of pain with it. After only 2 rounds (2/3 of a cycle) I could see and feel a difference in my lump and after 2 cycles, my onc was thrilled when she saw how much my lump had reduced. Infact she has now doubled the cycles so that I will be having 6 instead of 3. My pain has also significantly reduced-I only need paracetamol a couple of times a day now, previously my SBC had suggested I contacted the hospice for pain relief advice.  Hope it all goes well for you, Jencat x ... View more

Hi Sarah, I'm from the Oct '17 chemo group, where the lovely Shi is from too  🙂 Unfortunately my bc returned at the end of last year and I have now got SBC in my sternum and a few spots in my lungs. I've been having weekly Paclitaxel since the middle of May and coping ok on it-I have 3 weeks on, 1 off etc. The side effects are much easier than the three weekly Docetaxel, which I had in 2018. The main side effect I'm having is that I'm tired and feel a bit week for a few days, but I'm nearly 61, so that might be a factor! On a positive note I could see a difference in my breast lump after only two sessions of Paclitaxel, so even before I'd completed a full cycle! Originally my onc had only put me down to have 3 cycles, but because so far I'm doing so well on it, she's suggested I have another 3 until the middle of October. The pain from my lump has reduced a lot too and I'm not needing to take painkillers on a regular basis now. The worst part of it really is having to attend the hospital on a regular basis, I have to go twice a week because of having a blood test a day or two prior to having Paclitaxel.  It also takes a little longer than I'd thought because you have pre-meds before the chemo and then you have to wait 30 mins afterwards before the chemo can start. One of the pre-meds is an IV antihistamine, which I found really knocked me out and made me sleep for ages when I got home! A few weeks ago I enquired about the dosage and was told I was receiving a full one, so I asked if I was only having a third of the chemo dose at a time, why did I need this and so my onc was emailed and I was told it could be halved! I've since stopped having it all together as I didn't have any reaction to the half dose (my onc said it's on Royal Marsden guidelines) so if you find it affects you, it might be worth asking about it. Hope it goes well for you, Jencat x ... View more

Thank you Chaffinch x hope you are keeping well x ... View more

Thank you for your kind message Jill xx ... View more

Thank you Shi x we did mention trials yesterday to the oncologist, but she said they've been stopped at the moment-she had mentioned previously about putting me on one xx ... View more

Thanks for your reply Jill x Unfortunately my gut instinct about why I was offered a face to face appointment rather than the phone was right. The chemo hasn't worked (which I had a feeling about) and I've got a few specks of cancer that have gone into my lungs. I'm starting a new chemo next week, Plaxitol (not sure how you spell it!) which will be every week for 3 weeks and then 1 off. My oncologist seems quite optimistic about this one working, but I'm feeling upset and quite deflated at the moment xx ... View more

Morning Oct'17 girls, hope you're all keeping well and coping ok during lock down. x Feeling a bit anxious this morning as I've got a meeting with my oncologist and will get the results of my first CT scan since my diagnosis in February. My lump grew quite a bit before I started chemo and I can't see any shrinkage, even although I had a higher dose last time and I'm still in some pain with it. Also, overthinking that I've been offered a face to face meeting with my onc if I preferred rather than the planned telephone-she's had Covid-19 and is at my local hospital this morning and as ED said, she's probably offered me the choice as she knows that I'm worried about my lump as she briefly had a look at it for me when I was there for chemo a couple of weeks ago. I'm also worrying that the small spread in my sternum might have gone elsewhere xx ... View more

Buddyfan, hope CT scan has been sorted and review took place ok and you're keeping well x ... View more

Happy Easter to you all xx  🐑 🐥 ... View more

https://forum.breastcancernow.org/t5/Chemotherapy/bd-p/4435   This is the link to the Chemotherapy part of the forum x ... View more

I meant to say having chemo before surgery or just chemo x ... View more

I forgot to say DebR, I suppose it might also be worth posting on the general chemo thread as well to see if people on there can help you x ... View more

Hi Deb, I don't know if I can give you much advise, but just wanted to let you know that you're not alone and the lovely people on here will support you. I was diagnosed in June '17 with TNBC and had a WLE followed by chemo and rads. Unfortunately I was diagnosed with bc again in Jan with a small spread to my sternum. I'm currently on IV chemo-I've got my 2nd cycle tomorrow. I'm feeling anxious about that being able to continue with cv, but the chemo nurse was very reassuring last week when I spoke to her about it, but of course in the current climate there are no guarantees. I can understand your worry about not being offered the best chemo for your lung mets. Could you have the tablets for now so that you.don't risk having to go to the hospital, but pursue other options once the cv crisis has lessened or maybe ask for a 2nd opinion. I'm going to try and get a 2nd opinion on my treatment options for after I've finished chemo x ... View more

It was meant to say spending more time with me! 🙂 ... View more

Morning Shi, part two of my message back to you 🙂 I've still got a cat, Poppy, Oscar's sister. We got them both as kittens from a rescue centre. She's a lovely affectionate cat too, but it was always a bit more on her terms. She's seems to want more cuddles since Oscar died and spending Wed time with me, I think she's missing Oscar too xx ... View more