Off to order more Kelly @story1 - so glad you had a lovely meal out for the 21st
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How was your radio now it’s all done @emsd2025 ?? I know you weren’t keen but what advice would you give? Have you had any side effects?? X
Hi @story1 I’m ok so far - boob is a bit itchy and sore and ive been slightly achey but not too bad. Bit tired and in need of sweet treats. I’d say moisturise loads and I found closing my eyes helped. I’m so glad it’s done. I think it made me hyper aware of my boobs and caused a bit of anxiety. Do you have a start date?
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Planning CT on 17th then holiday then start on 27th (5 normal and 5 booster)
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Ahhh such a great idea to have the hol in between! Just back from seeing my oncologist who’s agreed to Pembro for up to 9 cycles - but may have to do it every 6 weeks if my liver plays up. Ugh more treatment
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@emsd2025 glad you have your plan and know what the treatment will be. Is this the end of the treatment for you after pembro? How frequent are you having the pembro? I was expecting pembro to be given every 6 weeks post-surgery but I don’t know if that is the norm, have not looked into it yet.
@story1 I just finished reading Dark Game. Finally was able to focus on a book post-surgery. Great, really enjoyed it even though it was just over my squeamish threshold 
Although I love watching thriller/detective/action type films or series I would not pick them out to read but I really enjoyed it and will be ordering the next one. I’ve leant it to my friend who is an avid reader of thrillers, so she is looking forward to it. Good luck with the planning CT.
The past 4/5 days I have been out walking more. I’ve been doing a short walk (around 30 mins) twice a day and walking around the house and garden in between. Yesterday I did the walk three times. Hopefully will start to step up to a longer walk. It’s the first time since early this year that I have been able to do that consistently and it is making a huge difference to how I feel. I am also noticing improved movement in both arms. So far so good!
Hope everyone is doing OK and enjoying the breaks in between treatments or tolerating things well. xx
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Hi @cathie2 so glad to hear you’re feeling stronger and doing some walking, lovely to hear! I think Pembro will be my last treatment, plan with my oncologist is to try every 3 weeks but space out to every 6 weeks if my liver acts up. She said she doesn’t expect me to finish the 9 cycles but we’ll see. Also said the liver was the reason the EC was pulled after complete radiological response on MRI and as pcr no need now really. It was a useful appt.
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Great news @cathie2 you’re up and about xxx sorry my books are a bit gruesome !!! I do like a good old murder and an autopsy scene! I’ve got great range in my left arm and even did some small weights yesterday. Rushing about this morning and I overdid it so having a little rest this afternoon. @emsd2025 sounds a very good meeting and you sound as though that’s reassured you a lot, that’s great. I have no idea how I’ll get on with pembro well just see. @cathie2 will you have further treatment or just pembro? Hope everyone is doing well. I ache like an old woman in the morning and if I sit too long! Just a suggestion this group has dwindled down to about 7/8 of us? Would anyone be up for a WhatsApp group? I find it so much easier to just pop in a funny meme or photo etc instead of trying to write an essay each time. What does everyone think? I’d love to keep in touch with you all x
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I’m so impressed with the weights! Yeah it’s all a bit of an unknown with Pembro isn’t it. I think I’m starting to feel a bit better and more positive - though still looking forward to meeting Peter Schmid. Think WhatsApp is a great idea - my number is 07970020550 x
I had a lovely visit from my mum at the weekend, first time she’s been in about 6 years! I usually go to her for part of each school half term but I’m not up for the 2 hour drive at the moment. She did a great garden tidy up for me.
Monday I saw my Oncologist. He confirmed that no further cancer was found in the lymph node clearance. I expected him to talk me through Radiotherapy but instead he started talking about further chemo! Not what I’d been expecting.
Yesterday I saw the surgeon and she explained everything a bit further. The Oncologist is know for being very thorough and is planning the adjuvant chemo as a belt and braces treatment to hopefully minimise my chances of TNBC reoccuring or spreading.
Now that all the histology results are back and I’ve been identified as having only 1 cancerous lymph node (removed during SLNB) I can restart targeted therapy. Herceptin injections starts next Tuesday - every 3 weeks. I’ll have at least 3 but ideally 12 - last one 8th December! That seems a long time away!
I’m now waiting for an appt re the RT, after that I’ll have 3-4 weeks break before the chemo starts.
Chemo will be oral Capecitabine, 8 cycles 3 weeks apart so with an estimated start in June I’ll be immunocompromised again through until December.
The chemo news on Monday completely floored me but it’s now sinking in and the rationale makes sense - more chance of staying cancer free.
So my life is on hold for 6 months longer than I expected. My goal to be back in school in September is now shifted by a term to January.
I’m currently in the limbo of not knowing how I’ll fare with the chemo side effects of Cap! Let’s hope I’m as lucky as I was on Docetaxel & Carboplatin. 
And I have a new hospital to get used to as all my treatments will be at Royal Surrey in Guildford because that’s where the RT is.
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@story1 I also like the idea of a WhatsApp group, I’m 07960392369
Oh that really sucks and I’m aware it’s absolutely protocol for tnbc, that’s Xeloda isn’t it? Are you on any Facebook groups specifically for tnbc? They’re excellent, I’ll find exact name of one I joined. Many of the women are on Xeloda and do very well with few side effects because it’s more targeted and less systemic (tablet?) you really have a double whammie don’t you? There have been a few occasions where I’ve thought I can start to get my life back but I don’t think of it like that anymore, I try to think day by day but that’s impossible with things we just have to plan like jobs etc I’ve been invited to give a weekend writing masterclass in a Cumbrian castle in October, it’s so effing cool and a great opportunity but I just don’t know how I’ll feel. Sending lots of love. Anyone got a dry mouth? I bought this spray and it’s an instant relief xxx
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Hello all, not much to report, recovering quickly from radiotherapy, virtually no redness or swelling left. I saw my oncologist yesterday, he confirmed that nothing else showed up in the planning CT scan, so that’s a relief. Just plodding on now with Letrozole, calci-D tablets, Phesgo injections, every 3 weeks ( until November) and Zolendronic acid infusions, every 6 months ( for 3 years).
Hi Rachel @story1 , good luck tomorrow, with your radio CT planning scan. The writers masterclass sounds great, I really hope you get to do it! My number is 07919748198 xx Hi @emsd2025 , great news about the Pembro and well done on finishing your radiotherapy. xx Hi @cathie2 , great to hear your are doing so well, just in time for the good weather. xx Hi @dizzy3 , so pleased you are doing well and lovely to hear of your mum visiting. It’s great to hear that your nodes are cancer free, but I was sorry to hear about the extra chemo, but you will be much safer after it, so well worthwhile. xx Hi to Ailsa @molly.m , just saying hello and hope you are doing well. My legs are now improving, so I hope you have seen some improvement to. xx
Hope everyone else is doing well and now looking forward to summer.
Love to all, Jane xxxxx
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Hello, Thankyou all for your replies on my last post. Your all amazing. My legs are still bad. My partner Ian is amazing and will often tell me to use aids when were out and about, today he went and grabbed me a wheel chair to push me around Ikea. Used a mobility scooter around asda the other day aswell. Im slowly getting better at not focusing on the idea that people are staring and judging me aha. I havent heard anything to do with the notes the nurse left for my oncologist so hopefully they are just thinking its all to do with treatment side effects.
I had my Radiotherapy planning appointment today finally. Dr says no radio on the lymph nodes under my arm as they saw no evidence of spread there, but on the first mri they did see an inflamed node at the back of my breast under the bone. They have to idea what caused it but it did go away with chemo, they just can’t say if it was cancer or not and because of where it is surgery wasn’t an option (I thought when they told me this initially it was the node under my arm and not here) so the plan is 15 rounds of radio plus 4 rounds booster. They will blast my left breast up to the lymph nodes in my collar bone/neck and possibly further right to get to the nodes at the back. But that is to be confirmed in a weeks time once she has spoken to her team. They want to make sure its the right thing to do for me as there’s increased risk to my heart and lungs if they do. Planning ct in about 2 weeks and start about 2 weeks after that. She also suggested i ring my bcn and have a chat. Had a little cry getting annoyed at my body 
Love the idea of the WhatsApp @story1 my number is 07809573060 
I hope all goes well on your planning ct tomorrow. That sounds amazing and what a lovely place to do it in too. Do you have to give them an answer soon ?
@dizzy3 sorry to hear about another round of chemo, but glad for the reason. Fingers crossed all goes well with it and the side effects aren’t any worse than what you had previously. Glad you had some lovely time spent with family over the last couple of weeks.
@bellbert glad your healing well from the radio and glad your legs are you the mend. Yeah I got a big purple mark that lasted weeks after my first phesgo, now I get a small circle but only lasts a couple of days instead. Your right, when I read anything about any of you being worried of having other checks or finds my tummy sinks. My legs aren’t any better. Still painful, still slow.
@buggeringon hope all goes smoothly with your application. Aha yeah kinda get sick of answering the same questions everyday from the customers, I know they mean well tho. I mentioned the joint pain to the dr today and she said that’s not really a side effect that goes with herceptin and thinks it may be from menopause instead. Or from previous treatment. But she’s not worried about it. Said it should get better with time and to be kinder to myself. Its not going to be an overnight thing.
@emsd2025 oh a cafe, how was that growing up ? I had my first job at 15 in a small 3 table cafe aha happy to hear your not feeling too bad since finishing your radio. How many did you have ? Happy to hear your feeling more positive on things now and glad the meeting went well.
@cathie2 your doing good with your walking, glad your healing well and gaining more movement in your arms now. Hope your appointment today went ok. And thankyou, yeah my mum seems to think I’m less grey than I was, post chemo aha which is a surprise.
Managed to make a small batch of biscuit earrings for the chemo unit I went to. Took them today after my appointment. Mostly clip in earrings and a few pierced ones. Hopeing people enjoy wearing them.
Love to you all xxxxx
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Results from surgery are in for me. The tumour was 22mm and the treatment zapped about 50% of the cancer cells, so around 50% were still active. The margins were all clear, there is no lymphovascular invasion and as we expected no lymph nodes were seen. So all really good news. I will be discussed at the MDT on Monday but he expects 3 weeks radiotherapy, followed by Pembro. The only question is if capecitabine should be added into the mix @dizzy3 I may be joining you. Capecitabine was one of two chemo drugs I had in 2008 and I got through relatively unscathed, although my body was 18 years younger
I will see him again on Tuesday to get the outcome of the MDT. The receptor status report will not be available until next week. I know it’s unlikely to change but I think it’s good to get the confirmation. Yesterday was such a huge day, the anxiety in the build up was immense and as I am sure many of you will have done, I prepared myself for bad news and actually it wasn’t the case. I am just very relieved it is over and I know now what is likely to be ahead. As was always expected we are now dealing with reducing the risk of recurrence and I’m feeling good about that. I even had a glass of prosecco last night, my first drink since early September – and it was lovely 
@story1 great idea about the whatsapp group – yes. What an amazing invite to give a writing masterclass – huge congrats!!
@emsd2025 glad you are feeling better. You have had so many additional stresses, its great to hear you are feeling more positive.
@dizzy3 Hopefully it’s a relief to be getting your treatment plan more or less mapped out now. I know it has helped me when I know what the next steps are, it’s a bugger it involves more treatment but the belt and braces approach is the best route to take. How lovely of your Mum to come and stay and sort out your garden. Does she travel – asking for a friend 
@bellbert great to hear everything is going well for you and you are recovering quickly from radio. How many weeks post radio are you?
@molly.m lovely to hear that you are slowly starting to feel better and getting out and about more. Sounds as though things are falling into place for you now and you are getting your appts confirmed to start the radio. What a lovely thought to take the clip on earrings in for others, so nice of you 
I have a question - the radio planning CT, I assume that just covers the breast area and under arm?
Have a lovely weekend everyone when it comes. xxx
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Sorry to have not replied for so long, I was prescribed gabapentin for my peripheral neuropathy and it zonked me out, have decided to reduce the dose massively, as it wasn’t helping the pain either. Hope everyone is doing well, I’ve obviously missed a post about WhatsApp - is that about taking this thread into WhatsApp or something else?
Feeling quite fed up , my energy levels are so low 10 weeks post chemo and 6 weeks post mastectomy/ node clearance - this is meant to be the good part without any active treatments! I start zolodex on Wednesday and I’m still waiting for my radiotherapy appointment..
Good morning, sorry to hear you are still finding recovery a struggle. I think we were all rather shocked that we didn’t bounce straight back after the end of chemo etc, in fact a lot of the symptoms got worse for a while, as you have found, but they do start to improve, with time. Yes we all joined a Whatsapp group, Rachel @story1 , will add you, if you can post your phone number here. Jane xx
I had missed this…what wonderful news. We can all plough on, trying to mend and reduce the chances of recurrence now. My radio CT plan, included my collar bone lymphs, middle of my breast bone, as well as my breast and underarm. This full range is quite common nowadays. I had 15 sessions, which were split over 4 weeks, I started on a Thursday, so only the Thurs and Fri of that week, then weekend off, Mon to Fri for the next 2 weeks and then Mon, Tue, Wed on the 4th week. Jane xx
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Morning, I missed this too… so very pleased to hear that there is nothing in your lymph nodes. I forget which side yours is, mine is on my right, but I still was, still asked to hold my breath to reduce the risk to my heart. They are very good at reducing the risks nowadays. Love your idea of the earring treats - I took lots of my Xmas ceramic decorations into my chemo unit as gifts, at Xmas. Nice to give something to the people that have helped us so much. See you back on the Whatsapp group. Jane xx
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