Looking for information from others as it’s looking like I may have to stop chemo earlier than thought….
I have had 4 x CE, 1 x Doxi, was poorly and ended up at hospital so changed to paxi. Plan was for 9 paxi but after 3 the nurses refused to give me my 4th due to runny tummy saying that it could be a sign of high toxicity levels. I have now missed 2 in a row for the same reason and my Oncologist was off sick when I was due to meet them. The replacement oncologist has advised they may reduce the dose, change the chemo type again but more likely move straight to operation.
So my question is, whilst I went from grade 3 to grade 1 after 3 x CE, have I had enough chemo to have good results? Don’t get me wrong, the thought of moving straight to operation sound amazing as after 2 weeks with no chemo I feel really well but my brain says, why would losing 6 chemo be a good idea if that’s what was recommended? Also, will I end up with more radio after the operation as a result?
Has anyone else went through this?
I know I should wait for the oncologist but I really need to understand the repercussions (if there are any) and know the right things to ask.
Sorry for the long post….
Hi there xx
I am similar to you, but for different reasons. I had 3 EC booked in but only had 2 due to the nasty not shrinking, moved on to 12 paxy but only did 6 with 4 phesgo injections. I stopped paxy due to poor MH and anxiety, they took me to surgery got clear margins on surgery and no lymph node involvement, I need 3 weeks radio then on to Kadcyla. If you are hormone positive just bear in mind you may need Kadcyla. It is our choice to either do Kadcyla or herceptin jabs. We all have different pathways xx I hope this helps
Hi @fimac1 I’m going through exactly the same as you at the moment!
I had 1 dox stopped (reaction), 4 EC, supposed to be on 12 pac now, but I am getting neuropathy and have missed 3 because of low bloods.
When I spoke to cons, they said the purpose of chemo 1st is/was mainly to shrink it and get on top of it asap, but they were also pretty adamant that the priority is always getting us to surgery. I had another MRI yesterday and hopefully will get discussed in tomorrow’s MDT.
I do worry like you - if going to surgery sooner does that mean a bigger op? Will I end up needing more chemo afterwards?
I suppose we can only ‘go with the flow’, as this journey seems to have a lot of twists and turns doesn’t it? If I find anything more out over the couple of days, I will update xx
Good morning, afternoon, evening and night… I’ve started this post so many times the seasons will be changing next!
When I first read the thread there were 1510 posts. Five months on that number has more than doubled. According to my stats page I’ve spent 3 days reading 10000 posts! So much information, conversation and sage advice.
Thank you to those of you who responded to my questions about PICC line removal and Covid vaccination. I think my PICC will be coming out the week after next. Not looking forward to having my bloods taken when it’s gone as it usually involves all of the phlebotomists having a go…as for the Covid vaccine. I’m still dithering…
There are so many posts to catch up on. I need a spreadsheet to record names and points I want to comment on individually but then I would need another electronic device. In fact I could have a bank of screens to manage managing reading this thread! How do you do it @naughty_boob, @arty1 and @salbert. Do you write copious notes, have an excel spreadsheet or are the chemo curls insulating your brains thus helping you to retain inordinate amounts of information?
The last few weeks have been busy. Had repeat mammograms and USS on the day of cycle 5, appointment with the oncologist and another with the surgeon. Date in the diary for op. Was very nearly going to be off my tits on my birthday but he’s away that week so having surgery the following week. My mum was legless on her 66th birthdays having had her right leg amputated above her knee. That was a sad saga…anyhow Dad bought her a parrot for her birthday which she named Edward after the surgeon. Dad also sang “hop hop away” instead of “hip hip hooray” when the nurses brought out a birthday cake and sang to her 
. She was not up to cake given she was feeling so rubbish but she did manage a laugh and an eye roll at my Dad.
The chemo has well and truly addled my brain or I may just have clarity as my head is not burdened with other people’s lives and worries. It’s quite liberating. I have been rather manic though. Making notes in the middle of the night. Feeling like I was as a my teenage self when I would churn out poems daily. Note to self to destroy them as I’ll be embarrassed if the kids read about my unrequited love!
Back to my surgery. We discussed options. As I hit the bullseye and joined the elite darts squad having ‘it’ in both breasts I’m going for the double top. Had decided both needed to go early on. I remain resolute in my decision. Don’t need them and no longer want them. Was told they were large, symmetrical and not droopy. Now wishing that I’d perhaps displayed them rather than keeping them under wraps since they grew about a decade ago. Option one was double mastectomy and go flat. Second is to have immediate reconstruction with implants. I now get to keep both nipples as I didn’t have a gene mutation. Woo hoo! Finally option three, autologous reconstruction (DIEP). The 9-10 hours surgery and as many weeks to recover is a lot. He thought I’d be a candidate for immediate reconstruction however said plastic surgeons prioritise the cancer. Not sure I’ve the mental or physical stamina for this. It’s enormous surgery. So I’m going for implants despite the list of 28 potential risks/complications. If it goes tits up then I’ve still got the other two options.
Quite different approaches from the three consultants when it came to sharing the imaging results. All said the same but differently. I had wondered how helpful mammograms and USS would be given the former only revealed two small areas in one breast and the USS revealed nothing untoward at all. It was the MRI that showed the extent of it and the areas in the other one, however as I’m opting for double mastectomy informed that repeat MRI not needed. The radiologist was noncommittal about whether the treatment has made a difference. Did comment on the plum sized haematoma from the biopsies in New Year’s Eve. I’m obviously a bruised peach now aor perhaps a fruit platter. All the fruit associated with my boobs, apples and pears and raspberry nipples. The surgeon seemed optimistic but agreed that we wouldn’t know until we have the pathology results. The oncologist said it hasn’t progressed. My conclusion is that it’s no worse so that’s good.
The weekend after the last two chemos has been dire. My Dad would call it liquid engineering but would have appreciated lava bum. Very visual description! Reminds me of a message I had from my lovely Mum when she was in the hospice. She was unable to wear her hearing aid due to a chronic ear infection. Both ears were packed with by the ENT consultant with antibiotics and gauze. Anyhow, I couldn’t fathom out her message. Die in here. Die hair. Dire here. Turned out she had a diarrhoea 
. I digress….
@salbert, I identify with your situation. My parents died a year apart. Mum was 72 and Dad 77. Dad had three primary cancers, bladder, bowel and then liver. Mum, advanced PD, terrible OA, the amputation and much more. Dad jested she was under every specialist at the hospital. My son was at university and daughter doing A levels. I had some counselling at the hospice and she told me that I’d reached the age (46) that my parents would die, my children would leave home and I’d be going through the menopause. It was just as it was. Bloody awful but I got through it as I will get through this.
I am saddened to read of @sms experience. I spoke up when I was unhappy with my parents care. I felt uncomfortable doing so but it helped drive change. I knew that it was not their intention to cause upset and I understood the pressures and demands they face and the emotional toil, however there were some things I could not overlook or accept. I hope that you find a resolution.
Cycle 6 done. Different experience in the chemo unit than last time. Not helped by the fact I had written down 11 o’clock when husband was certain it was at 2. Rang
and left message on answerphone asking for a call back to confirm the time. No one rang. Turned up at 11 to be told it was 2. Filled three hours wandering and had a spot of lunch overlooking the sea. It was like a millpond. There were a few swimmers and a paddle boarder. Wished I could have enjoyed the taste of my meal more. It looked delicious and was preferable to the hospital sandwich I would have been offered had my appt been earlier. Have found that I was usually last which meant that relatives and friends had been given a choice first by the volunteers who trollied the trolley around the unit. Offered cheese or cheese. On one occasion picked up a few to compare the amount of cheese contained between the bread then cheerily I said I’d like a cheese one.
Sat for much of my session quietly leaking tears. Daughter feeling unwell at work and my son and his wife were heading up north as her Mum was very unwell and the conversation about end of life care had been raised. Felt guilt that I was feeling sorry for myself whilst I still have a chance of growing old and many don’t.
Have felt really rubbish since, though today I think I’ve turned the corner. GP prescribed some additional ondansetron as the other two anti-emetics I have in my medicine stash weren’t helping. I was expecting the impact of the drugs to worsen but did not think it would be as bad as it has been. Spent best part of a week in bed and struggling to eat and drink. I have lost 11lbs. I had discussed dose reduction with oncologist but decided to stick with the treatment dose and manage. I’ve inherited my Mums northern grit and my Dads ability to accept. Surgeon recognised this as he wrote in my last letter that he commended me for my incredibly positive attitude. This group has played a part in this so thank you.
@sooz1 I was sad to read your update. I was diagnosed on the same day as you and we are in the same line of work so I’ve followed your journey. I cannot begin to imagine where your head is at with it all. I hope that you have lots of love and support around you.
@sassy3 I was prescribed Cereban for my chemo acne. I wash my face with it. Absolutely brilliant. My skin feels like velvet. Also prescribed Clindamycin ointment to apply to the spots which works a treat. Have a course of doxycycline should I need it - haven’t done. Gone from lumpy blind spots and red blotchy skin to nice skin. Have had occasional spots but nothing compared to how it was.
Time to get up, get out of my lazy bed… I’ve now launched into full on Matt Bianco. Music in the 80’s was so good. Xxx
@mrsjelly so lovely to hear from you, albeit from a bit of a rocky road. Cycle 6 done, is that the last one for you?
You may think you have an addled brain but I believe you are still in good form with your post. I always find it a delight to read your posts. You write with wit and humour.
So pleased you have made your decision re implants, I think we all have to do what is right for us.
Take care 
Hi @debly123 thanks for responding. I am on Phesgo (have had 3 so far) as HER2+ve hormone -ve. So I know that they need me to get more Phesgo, so more CE is not an option as it would delay Phesgo. So stressful waiting to see what they suggest. Even more stressful that back in January waiting to see what the plan was. On one hand I want more chemo, but the thought of no more and heading straight to operation just worries me.
Hi @leelee1 thanks for responding. So glad others in same boat (I never doubted there would be). Are you meant to have radiotherapy too? I haven’t been told how many or frequency of radio and worried less chemo means more radio. Oncologist previously said to me when I asked about radio, “just get through chemo and operation, then we will discuss radio”. Hate not having a plan!!!
It’s all so confusing isn’t it! I’m also not having an easy ride with chemo I only managed one ec, had my 1/12 paclitaxol and like you they cancelled this weeks (no2 and 1st herceptin) due to bad stomach and I had what I thought was dry arms, turns out both arms are peeling which turned in to almost a burn on Friday night so I was then relieved that chemo didn’t go ahead as it’s a delayed paclitaxol reaction - I’m meeting with my oncologist Wednesday goodness knows what’s going to be said or suggests! It sounds like you’ve had quite a good amount of chemo I’m sure your team will come up with a plan
My spidey senses tell me we may be about to get an update from our lovely @salbert 
@mrsjelly - I love your posts , you definitely don’t sound chemo addled even if you feel it !
So have you had your last cycle now ?
As far as retaining info is concerned … I can remember things I’m not supposed to but can’t remember something I’ve just been told three times by my husband (apparently )
@arty1 I was just typing in the forum URL and forgot where I was going midway through. The brain fog is unreal!
@carrie5 well done on having the confidence to do your first parkrun! Hopefully the rude folks didn’t ruin it for you. I find most parkrun people are lovely and it’s such a welcoming community, but not everyone is so self aware. I volunteered at my local and was so proud of one of my couch to 5k’ers that completed her first one as well. You guys are inspirational. It takes a lot to have courage to get out for that first one!
@gromit12 it’s the Chiltern 50, in Henley. You tempted to join? 
Do you run 50k?
Hi @naughty_boob and @arty1
Last of the carboplatin, docetaxol and Phesgo. Downsizing to Trastuzumab - 12 more to go. Next dose 3rd June. Oncologist mentioned Kadcycla if residual cancer found. I’ve parked that thought in a dark underground place for now. That will add a few more months to an already long enough road.
Delaying the Zolendronic acid infusions till I’ve finished Invisalign. That’s been a bit like my cancer plan … ever changing. Thought it would be 19 trays and I’ve had 40. Now there’s another lot on order. Might even have some composite bonding so they’re straight. I’m going to be returning to work with a whole new look without the cost of the visit to Turkey!
Have you had painful nails? Mine are really tender if I exert any pressure. Couple have split horizontally half way across. I salvaged them by good blob superglue which I then spread across with my ice lolly stick. Once set I used an emery board for a smooth finish. It’s worked a treat
@arty1 we seem to not only share the same memory style but husbands.
We’ve been for a drive across the East Sussex countryside to see if we fancied a move that way. Car got to hot so took my wig off. Stopped off at Batemans. Wanted to brave the baldness but didn’t have the courage to deal with potential stares. Odd thing is I’ve just been in my front garden without it whilst supervising husband digging holes. No hair covering because I didn’t care. Hoping for some regrowth now.
Time to sort out dinner… x
Run might be a bit of an overstatement. I will move 50k under my own steam (somehow 
).
@mrsjelly Have you thought about trying BIAB gel for the nails? Mine were so shit after I finished chemo and that was the only thing that made them not bend and break below the nail line.
Hello you lot, Mrs Posh Boobs here. (Thanks @carrie5 - I’m liking the new moniker and well done on your park run. Note to self: move more.) Thanks for all your lovely messages wishing me and my new boobs well.
I’m back in the land of the living and aside from feeling like I’ve gone 10 rounds with Mike Tyson, I’m pretty good. In fact, Mike lost. Tits looking pretty odd as they’re rather swollen, misshapen and bruised at present but here’s hoping they’ll be a smashing pair six weeks from now. They tried to send me packing first thing Saturday morning but I didn’t get out of surgery till 7:30pm Friday evening and had nothing to eat so I was buggered if they were going to shoo me out so quickly. I sent my husband to ‘take a look around South Kensington’ and then I ordered lunch and a film. Lunch was delicious but the film was rendered impossible to digest thanks to the codeine. I was whacked out on that stuff. It’s not a bad feeling but one can’t get much done on it.
@kartoffel 50k??? 50? What the actual… You’re amazing. You’re nuts. You’re awesome. You’re insane. You’re incredible. You need help. I must absolutely sponsor you as I will never be running 50k myself. Not on your Nelly. Running for BCN is perfect. I love this charity. I bet @gromit12 @norts and @galdiolus are chomping at the bit. @pennyp I was also thinking of doing the afternoon tea. I have done a lot of training in cake eating of every variety. In fact, there is not one cake at Flower Farm that I have not consumed. Go us!
@under_the_sea - You’re getting there and in the nicest possible way, I long to hear that you’ve been thoroughly pelted with water balloons.
@jan30 Good luck for the scans and let us know how they go. My friend is coming up to her 5 years after bc anniversary and I asked her if her annual scans worry her. She said no as there was no point and if they found anything she would just deal with it again. I liked that attitude so I’m going to try to emulate it come August when I get my first annual scans. That’s the plan anyway. I’m going to try to will myself stronger than the scanxiety.
@hasnae87 - Well done on getting out walking with your sister. That is absolutely the right thing to do. I went for a walk today. To Coughlans the bakers where I purchased two caramel Biscoff muffins but that’s not the point. It was a walk and we both will have benefitted from doing so.
@whippetlove - What a lovely post. I feel so happy to hear that we have helped you. We all agree that you need fellow warriors in this battle. I’m so glad you found us. If you start to dip then come and chat with us again. Together we are strong. Our Kadcyla girls are a super cool and truly lovely bunch by the way. They are our elite squad and have a habit of running obscene distances while on chemo but it’s not compulsory so don’t worry!
@caz591 - This is good news. Thanks for letting everyone know.
@fimac1 - I don’t have personal experience of your situation so I’m glad you are getting some answers from others in the same boat.
Hello @mrsjelly. As always a frank and entertaining update. You may well have a point about my super insulated chemo curl brain. It’s growing upwards at an alarming rate so I’d like to think it had some benefits other than looking utterly ridiculous. I have to say that the DIEP op just didn’t appeal to me either and I figured with so many women walking around with breast implants, you’d have to be pretty unlucky to be one of the ones who have problems. Thanks for reminding me that this part of life is one that countless women go through. Always good to know that you’re not alone and indeed, rather normal. As far as this group helping you to stay positive is concerned, well… you inject a lot of positivity into it yourself with your honest and funny posts so that’s karma at work right there. And yes, 80s music was indisputably the best.
@arty1 - Your spidey senses are good! How did you know?!
Yes I was told I ‘may need up to three weeks’ radiotherapy. To be honest I think they just said that to cover all bases.
To be fair I’d rather them say that and end up needing less, although it would be nice to know exactly!! xx
Good to see you back @salbert and glad op went well 
So good to hear from you @salbert - I’d love to pretend I was some kind of mystic meg but I saw you were replying at the bottom
Of the page …
I’m so glad to hear you are recovering well but I’m somewhat shocked at how quickly they tried to discharge you 
I think it’s fairly normal for boobs to be battered and sore for a few weeks afterwards but here’s to perky new boobs in a few weeks 
Ha ha. I had noticed the same thing @arty1. Was hoping you were going to come over all mysterious and pretend you genuinely had some kind of spidey sense.