Breast Cancer Now Forum

If it’s any comfort last time round I had a huge sentinel lymph node 25mm across and bigger than my tumour which was 22mm. They took out 30 more nodes and not one was affected. That little trooper had held onto everything.  I am slightly resentful as I get a lot of problems from the total node clearance. This time round there were no nodes affected thankfully, so they only took three as a sample which was clear. I am now halfway through radiotherapy. I’m enjoying it in a weird geeky way. I am very proud of my breath holding! The odd thing is that at the planning session I had a nice little pink gown to wear and whip off once in position. Yesterday I walked in to see three cheery young men one of whom said “Strip to the waist and jump up on the trolley” so I did. No dignity there! I’m considering my feedback at the end of the week. I’m lucky my hospital does the FAST Five treatment so I’ll be done by Friday.  I’ve got my dates for bloods and the start date for Cape (Oral chemo) now too. I’ve negotiated a month off to recover first. My mood has settled back into resigned plodding mode. This is now a tetrathlon rather than a triathlon. Sending solidarity to you all. Nancy   ... View more

Hi gang I think I can help. When I had a complete pathological response to my triple positive cancer in 2020 I was told I only needed Herceptin. If I hadn’t then I would have had Phesgo. That is why you are only getting a Herceptin on its own. You don’t need the extra. If you don’t have a CPR they will upgrade to Phesgo.  Im now in a similar situation with cancer no 2 which is triple negative. If I had a CPR I wouldn’t need chemo but because I didn’t I’m having Xeloda for 8 cycles.  I’ve had my Zometa infusion and while I’m not having much pain I am very dopey. It’s messed up my efforts to get fitter. All I can do is loaf about today. Sending strength to all Nancy ... View more

Well done @FayeL  it does leave you drained and exhausted doesn’t it? Proud but a bit defeated. I think the way forward is to take the month you have to recover with good food and fresh air and get fit for the next round. Don’t look too far ahead as the road seems endless. I am still struggling with slow healing wounds and a rotten cold but I’ve got my RT planning scan on Monday and a chat with my oncologist about Cape. I think it is a shock to realise how long the journey goes on for some of us.  ... View more

Thanks @KMS2022 I’m still moping a bit waiting for my wound infection to clear. My very perceptive daughter observed that I am miffed because I like to be top of the class and I feel like I failed not getting a CPR. She is right of course. I will feel better when I’m healed and able to exercise again. Still sitting on my hands trying not to overdo things and also very tired from chemo still.  sending best wishes to all Nancy ... View more

@bearcat I had an awful time with my first infusion with a flulike illness 2 days after the infusion that made me feverish and ache severely all over for about a week. Luckily the subsequent 3 doses have been much better. I take calcium and vit D tablets twice a day.  I had my surgery results this week and am a bit thrown. Good news, all cancer has been removed with clear margins and no lymph nodes affected. BUT there was still some live tissue and consequently the MDT recommended treatment with Cape which is oral chemotherapy. I really didn’t expect this as my scans and the oncologist told me to expect a complete response to neoadjuvant chemotherapy. Initially I was upset as I seem to have been on treatment forever.  This is my second BC in two years and I have been having treatment for 22 months put of the last 31. I wanted a chance to recover and have some fun. On Friday I saw my old oncologist and the plan is radiotherapy first with two months of surgery recovery time. The decision about Cape will be made with my new oncologist when I see her. I think if I take the chance to get fit and healthy now then perhaps I will feel stronger and able to cope with more chemotherapy.  This is a brutal process and it is hard to stay strong and keep going. Sending strength to you all x ... View more

Surgery is done! I had a whole day of being poked and pricked and prodded from 9am till I escaped around 7pm. I was fed up by the end but everybody was very kind. Now I am home and trying to sit quietly as much as I can. The house was freezing but has warmed from 10C to 16C now. I find a hot water bottle very good for pain relief too. I am trying to shut out of my mind the prospect of pathology results in ten days as much as I can. I really don't want to consider the possibility that I might need more surgery or chemotherapy  even though I would do it if they tell me I should. It will all be fine and I will just need some radiotherapy and then it will be over. Or so I am telling myself.  The effects of chemotherapy are fading quite fast. I still have mild neuropathy but that is improving every day. My scalp is a dark fuzz now, not actually hair yet. My joints are quiet. I am still breathless on exertion with a faster pulse than usual but I look quite well. I am just a bit flat and bored and dreary now. Like the weather perhaps.  How's everybody doing? There must be a few more on the last lap of chemotherapy now!  Nancy     ... View more

I had lumpectomy last time and I'm having the same this time so I don't have any knowledge of mastectomy or reconstruction I am afraid. My operation has been moved three times but is now earlier than I expected on Tuesday 24th so I hope there won't be time for any more changes.  I had a mad idea yesterday. I have had a triple positive tumour on the right and a triple negative tumour on the left. Basically I am a human battery. If you connected up my nipples I could probably generate power!  I've been to several exercise classes since last week and now I ache a lot. It's a long way back to fitness!  Sending best wishes to all still plodding through the last few rounds of chemotherapy. You are nearly there!  Nancy     ... View more

Poor @FayeL getting nits that is properly annoying!  You are so close to the end now just keep plodding onward and it will be over before you know it.  I have my operation date now for 27th January. I am still very tired but recovered from Covid I think it is just the dose dense regime has hit me harder than I expected and I am taking a while to get my energy back. Tomorrow I am going to an Aquacise class for the first time. I have a proper old fashioned swimming cap for my baldy head!  One good thing is that my joints have all gone quiet since chemotherapy. I am not at all keen on restarting the exemestane hormone blockers but luckily nobody has mentioned it so I am quietly leaving them off until they remember! I know I need to go back on them to reduce the recurrence risk but there is no rush. Sending strength to you all Nancy x ... View more

Glad to hear you are feeling better @Aliwoo82  I went to my first fitness class  in three months this morning. I kept an eye on my pulse rate and it didn’t go above 148. The first ten minutes went very slowly but then I got into it and time flew by. The teacher is my friend and made an embarrassing fuss of me when I was trying to lurk quietly at the back. I shall sign up for a few more now I have taken the plunge. Also I am going to stop the comfort cake and see if I can shed the spare tyre I have cultivated. New Year new resolutions! It’s so much easier to sit on the sofa snacking but there’s lots I want to do this year that needs me to be fitter.  No date yet for surgery but I expect the post is still backed up. Keep going folks, there is light at the end of the tunnel!  Nancy x ... View more

That’s good news @Aliwoo82  and well done for persisting till you got them. I’m feeling much better and both DH and I are testing negative now. The only downside to Paxlovid I found was a mild headache, occasional diarrhoea and a vile metallic taste to everything but as I said to the kind consultant microbiologist who phoned me, compared to chemotherapy it’s a doddle!  I have started the slow climb back to normal life but it was so tiring I went back to bed this afternoon. It’s actually my wedding anniversary so I need to rally and go and see if there is suitable food in the fridge for a romantic candlelit dinner.  Best wishes to everybody Nancy ... View more

Oh @Aliwoo82 that is bad luck! Have you rung the chemo helpline? They will want to know what’s going on even though the NHS system for Paxlovid works well. My drugs came in a taxi on Boxing Day! At least you were able to enjoy Christmas unlike us. My DH is really upset about the wasted food and effort we put into decorations and prep. He is blaming the selfish friend which is a bit harsh as it could have been anywhere he caught the lurgy. I’ve sent him out on a long bike ride to clear his head.  I noticed last night as I fell asleep, and again this morning, little bubbles of happy relief floating up like champagne fizz. I am just beginning to believe I’m through the worst and I am coming out the other side. Not just Covid but chemotherapy and cancer! I shall go into 2023 with a light heart looking forward to better times. I wish the same to you all. Nancy x ... View more

Well what a let down Christmas turned out to be! Having finished chemotherapy 12 days before I thought I could enjoy a nice day with family. I didn’t factor in the thoughtless friend who turned up with a cake and a Covid cough last week. Husband got it on Thursday and I tested positive on Christmas Day. I’m not feeling too bad and have received my parcel of Paxlovid from the hospital pharmacy this morning. They were very efficient,  I spent Christmas Day drinking lemsip at home cursing said friend. Today all my most loved relatives are gathering without me. It’s not fair! Honestly it’s about time my luck turned and some good things happened to me. I am very good at rolling with the punches and making the best of things but even I have my limits.  Sending best wishes to you all and hoping that side effects are minimal and effects maximal Nancy x ... View more

Welcome @omil @I can’t imagine how you cope with three children while going through this ordeal. How old are they? Mine are adults so they take care of me now! I’m 62.  Well today I had my last dose of Paclitaxel and I HAVE FINISHED CHEMOTHERAPY !!! On the dose dense regime I have had it fortnightly and blasted through in 16 weeks. Now I get a nice rest until surgery at the end of January. I’ve still got to do the filgrastim injections but I’m so happy to be free of the chemotherapy unit. I took in sweets and chocolate biscuits today for the staff and I really hope I never see them again. But I said that two years ago and here I am again so I won’t jinx it this time.  Who is going to follow me out of the door next?  Best wishes from Nancy ... View more

@mumof3runs    the steroids make you turn into a rather round red tomato. My face goes bright red and I have a new chemo fat tyre round my middle. On the plus side I don’t feel the cold at all! I hope you are still feeling okay. My aches kick in around day 4 once I start the filgrastim injections.  Sending the family off to have fun without you sounds a good thing to do. While they won’t admit it I am sure that worrying about you takes it’s toll so giving them a day off will help everybody. You can look forward to being the life and soul of the party next year when all this is a distant memory and your hair has grown back.  @Tanny i hope you are comfortable after the op. Have you got a drain? I’m delighted to hear I won’t need one this time.  I had such a weird encounter with the surgeon. While he was delighted with my scan result and plans exactly the operation I expected he suddenly started to talk about a patch of calcification on the mammogram and how he wanted to excise it with all the “cells that grow in the milk ducts and don’t respond to chemotherapy” otherwise I would need a mastectomy! Then he said that they had reconsidered my genetic risk and decided I need a gene test on the NHS despite my advanced age of 62. It totally freaked me out at the time. I now think he is expecting that I have an area of DCIS next to the tumour which is apparently quite common. But why didn’t he just say that? This is such a rollercoaster  - one day you think you are winning and the next they bring you crashing down again.  Love to all. Hope you are staying warm and snug and on top of things. Nancy x ... View more

I bear glad tidings! Today after 7 rounds of chemotherapy I had progress scans and to the delight of the radiologist the tumour had vanished. She couldn't find anything except the marker she put in in September. The dose dense EC and Paclitaxel seems to have worked and although I am weak and battered I am absolutely thrilled with this news. Tomorrow I am going to see the surgeon to find out what they plan for me next. Then I have a Christmas Tea party with my BC yoga class where I can celebrate properly!  Keep going ladies! We can get through this and beat the cancer!! Nancy xx     ... View more

Hi @Aliwoo82 I hope you are still feeling okay. I have concluded that the best way to survive all this is just to take it a day at a time and enjoy the small gains. I had my penultimate dose of chemotherapy on Tuesday and on Wednesday we went on our annual trip to the Christmas Tree farm for hot chocolate and Bakewell tart. I was so happy! I’m also really pleased that this week I haven’t put in any more weight as it was marching up by 1kg every time and it has dropped slightly. Next excitement is the review mammogram and US scan to see if the tumour has gone. My oncologist is very optimistic but we shall see next Tuesday.  Regards to all. Stay strong!  Nancy ... View more

Hi @Yorkie51 taking all that stuff should work soon but it helps me to drink something hot like a coffee and go for a walk. That always seems to get me going! It’s such a relief when things unblock and you feel normal again.   ... View more

@LD2022 I think its hilarious that you describe the pains from Paclitaxel as "odd stabbing pains" while I called them full on screaming agony! I must be a drama queen. Happily my oncologist has said I can have gabapentin again which smoothed them out beautifully last time and I am cheerful about going for my penultimate chemo dose tomorrow. I managed half the 5K Your Way Move against Cancer Park Run again this month which cheers me up too. I am definitely at a low ebb with breathlessness and back ache and no energy but the end is in sight! I have a scan next week and a surgical appointment to discuss the results and plan my operation in January and my oncologist is keen to see me get a Complete Pathological Response to treatment. Having read about the difference in prognosis between CPR and residual disease in Triple Negative BC I am pretty keen too! It is worth going through all this awfulness if it works well and we never have to go back. The ice gloves and socks seem to be helping prevent neuropathy as I am not noticing much numbness or pins and needles in my hands or feet.  Sending best wishes to all Nancy ... View more

Hi Faye and everyone I would say don’t be too scared of EC. It is tough but doable. In my experience the first three or four days you just feel drunk and tired but you take steroids which gives you a big lift. These will be just wearing off at Christmas but the late effects won’t have kicked in till later. I reckon you have timed it just right.  I agree about the incremental tiredness. I am slowly getting more exhausted but find if I go out for a little walk I do feel better for a while. I am trying to turn down invitations over the next month but some things I really want to go to! It’s a balancing act to get it right. I can’t wait for all this to be over.  Sending strength to you all Nancy ... View more

Oops posted a bit soon. Good luck for the remaining treatment and best wishes to everybody Nancy x ... View more