Sept 2022 chemo starters

[LauraR]

Hi @FayeL and @Aliwoo82 

Wishing you both all the best for your surgery on 28th.

I have to say, I have found the surgery to be the easiest part of this process. There was the worry pre-op that I would wake up, but I was home by 6pm same day and no pain relief needed once home. My surgeon doesn't use drains or dressings, and uses glue on the scar. It was very easy to see straight away how my new body looked but I had prepared myself and kept reminding myself that the cancer was gone which felt so good.

It was a bit hard to dress so I had vest tops that I could step into and pull up easily, then a zipped hoodie to pull on top. Put in the arm from affected side first, then easier to pull round to other arm. I was reluctant to put on a bra and softie - happy with flat look (even if lopsided :-)) but I think there is some benefit to reducing swelling if you do. Long sports bras work similar to vest tops in that you can step into them and they will hold a softie. I spent money on front fastening bras but think it was a waste for me.

Bamboo is soft and cool. My vest tops were bamboo, and I bought two bamboo pillow cases. One I used for pillow and used to rest my arm on, and one that I cut up and covered the heart pillow the hospital gave me, which stopped my arm rubbing my side post surgery.

If you are going to be having radiotherapy, there will be an arm position you will need to get into, so please do your exercises as advised by the hospital and don't skip them. I had all my lymph nodes removed which made stretching about my head hard - the exercises really do help and I am glad I persevered. I had radiotherapy 6 months post surgery, and 4 weeks post chemotherapy, and my arm just about did what it needed to.

No-one told me I would need a tattoo pre radiotherapy to mark where the treatment was needed (in the end I had three). My children thought it was hilarious I had put them off tattoos for years, and then I got three - first in my family to have tattoos!

Give yourself time to chill, heal and have fun whenever you can, but also eat well, drink plenty fluid, gentle walks and exercise to make you feel as good as you can and promote healing. Use E45 or gentle cream once you are allowed.

If radiotherapy, you should be given a cream to put on. Use this twice daily from the start, even if no effects seen. My skin was fine for about 10 days, then the redness started. I used E45 in between the hospital cream twice a day to keep it in best condition I could. I also hadn't realised that skin effects continue even after treatment ends, so my skin was at worst about 2 weeks after treatment finished. Very flaky like bad sunburn but some people had told me about skin going black, so I was lucky. 

I can understand your feeling of 'never ending' treatments and when it's ever going to end.

I can't remember the last event I was able to celebrate - dad's 85th I told him I had breast cancer, daughters 30th birthday was chemotherapy, my birthday was neuropenic sepsis, Christmas was chemotherapy, mothers day is really bad cough/cold/temp...I just wanted a good holiday this year in the sunshine but can't get holiday insurance as still have bisphosphonates to start (tomorrow) and then abemaciclib - they'll consider me if I have no ill effects after started everything.. 

I just keep looking forward and hoping soon, we will get through this bit.. and how much more we will appreciate and enjoy it. Look how far we have come! Come on we can do it 🙂

Laura

[Nancy.B]

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

[Aliwoo82]

@FayeL yes, my date is the 28th too. The hardest part about being between the two hospitals is knowing who to call for the different questions! But I’m sure it’ll all work out. 

It’s so hard knowing what to tell the children isn’t it. Mine probably know too much, but they’ve asked so I’ve been honest. I didn’t tell them when I was unsure about the surgery as I didn’t want them worrying unnecessarily. Hopefully the openness will help them in the long run! 

[FayeL]

@Aliwoo82 Oh that's good news! I remember now, we have the same surgery date don't we? 

I totally agree about trying to get answers to questions, and being between 2 hospitals, it's really difficult. The cancer admin is hard work. I keep a page of notes on my phone so I can look at it when you get called back, but even then I still forgot stuff! 

[Aliwoo82]

Hi @FayeL, I tried to chase them up on Friday, and rang again on Monday. Thankfully one of the breast nurses rang me back mon afternoon and went and found out for me then rang me again super quickly. She could tell how anxious I was I think! Thankfully she found an email trail that said the anaesthetist had reviewed my echo and we’re happy to go ahead with the surgery as planned - so 2 weeks today I’ll be coming round from surgery cancer-free and with a new boob! I was trying to think positively about either option, but I’m so relieved it’s as planned! I’ve still got a couple of questions but I’m going to try and get them all written down and ring them again next week to hopefully get the answers. I think it’s just frustrating that when I want to talk to someone no-one is there! I think being across 2 hospitals now is hard, but hopefully it will all work out as planned. 

[FayeL]

@Amy123 - I also had one definite positive lymph node before chemo, which was biopsied & a possible second. Same as you, nothing visible on the MRI I had midway through chemo, but all the nodes are coming out & while I've been told I've had the best possible response to chemo, they've been very clear that until the pathology is back nothing is certain. I'm struggling quite a bit with the anxiety around getting those results too.

And I'm extremely conscious of every little twinge in the boob, I'm sure I can still feel "something"....but my surgery is 5 weeks after chemo & I've been told that's about right so I'm trying not to stress too much.

♥️

[FayeL]

Hi everyone,

I've not logged on for ages, as soon as my last chemo side effects were over, I've been doing a good job of pretending this isn't actually happening!!

Well that came crashing down today because I had my pre-op assessments. Surgery is on the 28th, so I've got 2 weeks to cram in some fun, as well as trying to get my strength/health back up. I think I need to do some work on the anxiety as well because I'm feeling really overwhelmed. Seeing the drains, and being given the softie boobs and talking through the recovery has been a bit shocking. 

I've also been told there'll be 3 weeks radio, plus bisphosphonates, ongoing immuntherapy infusions and if there's residual cancer, then I might be eligible for Olaparib. 

I obviously knew there was going to be further treatment, they said at the start this will be about a year but it suddenly seems so bloody endless!! I think the transition between stages of treatment is harder than I expected, I sort of thought I'd just be hyped from finishing chemo & moving on to the next stage. 

I've also decided to stay flat, and while I'm confident I'm making the right decision, I'm really apprehensive about what my reaction will be when I see myself.

I'm also building myself up to telling the kids Mummy is having her boobs off....😬

@Aliwoo82 I'm sorry you're having to go through the extra anxiety of not knowing if the surgery is definitely going ahead. Maybe chase them up? I've really found I've had to keep bugging my BCN, I know it's because they're busy but I had to call a few times because I hadn't got appointments I'd been told I was getting. I hate being a pain but I think it's just the way things are rn.

Anyway, I hope those of you post surgery are recovering well and coping OK on any new drug regimes/with radiotherapy.

This is such a crappy hand to be dealt, and I really hate it when people say I'm being brave but I guess we all are, even if we don't have much choice in the matter!! 

Love to all ♥️♥️♥️

PS Any tips for surgery recovery, or things I might need gratefully received...so far V shaped pillow bought, and drain bags/underarm pillows given to me by the hospital... Xx

[Aliwoo82]

Hi all, 

I too am only having Herceptin post chemo - I had one 2 weeks ago and have another on Thursday. Strangely I got a swollen ankle after my injection, but after a couple of ultrasounds they were happy it wasn’t a clot and just a side effect of the Herceptin. I didn’t really get told why it changed, but I took it to be a good sign I only needed one drug instead of 2! 

unfortunately I also have the main side effects of it though, where it has affected my heart. My ‘ejection fraction’ has been slightly reduced, so it’s not pumping out blood as quickly as it should (45% instead of 50-70%). They put me on ramipril to help it, although I’m now worried this could have an effect on my planned surgery! I let the nurses know at the hospital I’m having the operation and then had a phone call from the pre-assessment team who suggested I may not be able to have the full operation as planned, but my echo needed to be reviewed. I’ve still not heard from them so I’m in a strange state of worry and trying not to worry! I’ve just had a very early phone call from the breast surgeon who hasn’t heard anything, but has said I need to insist on the mastectomy and lymph node removal still happening as otherwise I’ve got another months wait!

[Amy123]

Oh, and I have one positive lymph node from biopsy result. Again, this didn't show up on the post-chemo MRI, but I'm still due to have ALND levels 1 and 2. I'm just praying none of the others are positive.

[Amy123]

Hi everyone, thanks for your replies.

I am now really confused, because when I questioned why only herceptin had been prescribed, they changed it back to Phesgo. I won't know until after surgery if I am pCR; currently only the MRI shows no cancer, so it radiological complete response. What's confusing is that you were given herceptin only before surgery @KMS2022. Now that you know you are pCR, it makes sense that you are having herceptin only, if that's what the protocol is.

I had my final jab (Phesgo) yesterday before my surgery on 23 March. I have the next one booked in for 5 April, but not due to see my onco until 19 April, so I'll have to contact them and check what I'm supposed to have.

When I arrived at the unit yesterday I asked about the dose and the nurse said "You were absolutely right, you're still within the 6 weeks since your last shot so you only need the maintenance dose." It's really worrying that I'm the one advising them about correct dosage. Go figure.

I must say, up until now I've had no complaints at all about my treatment, everyone has been brilliant, but I'm now feeling quite jittery and I'm really aware of my lump and have "sensations" in that area, even though when my onco last examined me in January he said the lump was hardly palpable and there was nothing on my MRI. My surgeon did say there was "some thickening" in that area when she examined me a couple of weeks ago but was not concerned about it. Did any of you feel anything after the lump was supposed to have melted?

Hope you're all ok and moving forward without any worries. Sorry if I'm over-reacting. 

Have a great weekend

Amy xx

[KMS2022]

Hi @Nancy.B and @Amy123 

Yes that is exactly what the oncologist has just told me. That because i have a CPR and node negative, they continue with herceptin. 

Hope you are ok Nancy? Today is a day to stay wrapped up warm at home anyway. Hopefully soon you will feel better xxx

[Nancy.B]

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

[KMS2022]

@Amy123 

ps. Great news on your complete radiological response!! x

[KMS2022]

Hi @Amy123 

I was on 3 weekly phesgo too up until Jan 10th. I was due to have another on Jan 31st but i was told it was being rescheduled as they had to review it and time the injection correctly pre and post surgery (they said something about they had to ensure I wasn’t given too much?). 

Anyway, i went for my normal phesgo injection 1 week before surgery on feb 14th (5 weeks after my last one) and i was given herceptin only. The nurse emailed the oncologist and she said it was correct. I even emailed my macmillan nurse afterwards and this was the reply “They  will explain re Phesgo/Herceptin as it gets very confusing going forward”.

Anyway, i am now 2.5 weeks post surgery and 3.5 weeks since my last jab. I am with the oncologist again tomorrow and they said i will have my next injection then. What it will be i have no idea? I am equally confused as you!

[Amy123]

Hi everyone

Haven't logged on for a while but have caught up on all your news. Happy for those who have had a complete response so far and wish you all the best for your continuing treatment. 

Some of you said you are having Herceptin. May I ask if this is just Herceptin or Phesgo (Herceptin+Perjeta)? I've finished chemo now. I had 4 lots of Phesgo with Docetaxel, and been prescribed 14 more injections at 3-weekly intervals. I've had a difficult few weeks in this regard. When I went for my first injection after chemo, the prescription was wrong and they only had Herceptin for me. They got the Phesgo in for the next day. When I went for the next one last Wednesday, same thing - Herceptin only. Since then I have been waiting for them to call me to say when I can have the correct injection. Finally got a call today to say I can have it this Thursday, more than a week late, but because of the delay I will have to have the loading dose again. I looked on the Phesgo website and it says to have the loading dose again if more than 6 weeks between doses, and only maintenance dose if less than six weeks. I will be 4 weeks only so don't know why they want me to have the loading dose again. Surgery is planned for 23 March so trying to get my head around that and don't need the extra hassle over Phesgo. 

Sorry for the rant but finding this really frustrating and upsetting, mainly because I couldn't get any update until today. I even went to the chemo unit on Friday afternoon to sort it and was told pharmacy still had the wrong prescription for me. I think this is my oncologist not being on top of things and that really worries me. The first time the prescription was wrong, I spoke to him and he said the prescription was generated automatically and he should have checked it. If I hadn't queried it with the nurse when he showed me the injection, he would have just given me the Herceptin.

On a more positive note, I also had a radiological complete response after chemo and hope the pathology after surgery will confirm that it's all gone.

Wishing you all well.

Amy xx

[bearcat]

Wonderful news, KMS2022. I'm so pleased for you! Not yet sure if I will have 5 or 15 days radio - will find that out in a few weeks. The docs like to keep some surprises up their sleeves!! take care Lisa xx

[KMS2022]

That’s great news @bearcat ! Particularly about the lymph nodes!

I had good results too. I had a complete pathological response with no cancer found. I was quite shocked as the oncologist had advised me that she normally sees a 50/50 split where there are some pesky cells left behind.

Next step for me is same as you I think - 15 rounds of radiotherapy - although there is a delay in my area though so i likely wont start this until mid/end April. I will also continue with Herceptin jabs until the end of the year x

Waiting for results is THE worst. My oncologist had always assured me that whatever the outcome, there was a treatment but even so. I was terrified. I can breathe now. Hope you can too xxx

[bearcat]

Just back from seeing the surgeon. It turns out I have one rather than three lymph nodes affected and the response to chemo has been good although not complete. Such a huge relief to be looking at a better outlook than I thought. Still will be having radio and abemaciclib, though. 

@KMS2022 - hope your meeting went well. Have been thinking about you

xx

[bearcat]

Hiya, 

The book is really inspiring. I'm still reading it, but it referred to this website which has a free online course https://anticancerlifestyle.org/ (see resources) that I've been doing - quite a few helpful tips in there. The other book I liked was How to Live by Robert Thomas, a professor of oncology and integrative medicine at Cambridge and Bedford. Lots of evidence based recommendation for diet and lifestyle changes you can make to help reduce the risk of recurrence. 

Take care all

Lisa xx

[Lollynewme]

Hi all

ive just ordered that book from Amazon as reviews were good - thanks for the recommendation x😘

[KMS2022]

Hi @bearcat 

Just googled that book. It sounds really good. Is it worth buying? I feel like i need to take control of my life post treatment to know i am doing as much as i can to keep the bugger away x

[bearcat]

@KMS  keeping everything crossed for both of us 😊

@Aliwoo82 – hope your nails get better soon. Mine are looking much the same. Hopefully it won’t be long before they grow in healthily. Hope your leg is feeling better.

@FayeL – well done on completing the chemo. It’s a relief to get that PICC line out, isn’t it? Each chunk of treatment we get through is a relief, but it does seem to go on forever, doesn’t it? Hang on in there. I’m reading a really inspiring book called Anticancer Living which is keeping me more cheerful because I feel I’m helping myself heal. Just call me a control freak... 😀

[Lollynewme]

Good luck to you both with your results x 

[KMS2022]

Hi @bearcat 

I get my post-op pathology results same day as you! Hopefully positive results for both of us. I just wish Friday would hurry up! x

[Aliwoo82]

Hi @FayeL i hope you’re not feeling too bad after your last EC! Well done on completing the chemo journey. Our surgery date is the same day! I’m having a left mastectomy with full lymph node removal and a diep reconstruction.

I had my final docetaxel on the 2nd Feb, then I had a Herceptin injection on Thursday as I need to keep that targeted therapy up for around a year I think. Unfortunately it meant another a&e visit last night as my right ankle has swollen up, so I’m on clexane and have an ultrasound of my leg on Wednesday to check there isn’t a clot. My last round of chemo has left me with horrible nails - my fingernails are tender and discoloured, and both my big toenails are black and blue and I’ve a feeling I may lose my left toe nail! The right toenail is better as the pressure has been released, but nothing has gone from the left yet. Unfortunately this side effect has been bad for the last 3 weeks and I can’t see it improving anytime soon! 

I hope the rest of you are all doing well xx

[Nancy.B]

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. 

[FayeL]

👋

Hope you're all having a nice weekend! Well, had my last chemo on Wednesday, PICC line out & now in a bit of a slump. Had a long meeting with new surgeon yesterday which was productive but emotionally v tiring.

Have been told I've had a complete response to chemo which is good news, but thanks to ladies here, and on the TN Facebook groups I know that the full details won't be known until pathology after surgery, so I'm trying to keep a level head. 

DMX no recon, with a full clearance of nodes booked for 28th March, then meeting Onc end of April for planning next steps, but have been told will include 3 weeks of rads.

I know I'm in a chemo low at the mo, but I feel so emotionally drained. I'm proud of getting through 5 months of chemo, but I feel battered & the thought of surgery & recovery feels overwhelming. Just before the school hols as well, so another holiday where I'm probably going to be out of action. Eurgh.

Ooof. Trying to remember that I'm usually in a much more positive frame of mind once I get about a week out of chemo. This EC is playing havoc with my mood!!

I really hope you're all doing well, I'm going to try and pick myself up & focus on getting strong for surgery!

Love to all XXX 

[bearcat]

Hi all, 

I’m home now after 7 days in hospital post surgery. I’m healing well and doing my exercises religiously and am delighted to have the operation behind me. I’m now happy I made the right decision. First day post op I was quite sick from the anesthetic, but you can ask for anti nausea drugs. I have my path results on the 3rd March. I’m not looking forward to them. Am scared that it will be more than 3 lymph nodes affected (currently 2, possibly 3).

@FayeL  – sorry to hear that you are getting low with chemo. I found (And find) my mood very variable. Soppy movies and getting out for a walk helped a bit. Great that this is the last round of chemo for you. Such a nice milestone to hit 😊

@Nancy.B  – hope your infection is improving. Stopping yourself from overdoing things is a real challenge isn’t it? I’m struggling with not being allowed to walk my dog/drive etc. Such a pain. Thanks for the reassurance on the zolendronic acid. Fingers crossed I’ll follow that pattern – two of my doses are timed just before the school holidays kick off which is not great timing. So sorry to hear about the new chemo, that's a bit of a blow. And so tough to go through this all twice in such a short period of time. Brilliant news that there are no lymph nodes involved, though.

@KMS2022  – hope the lumpectomy goes well today. Keeping things crossed for you.

@LauraR  – thanks for the well wishes. Re the infusion, I felt like I had flu – fever, headache and extreme lethargy. It was the worst the first day afterwards, I couldn’t take the dog out. Subsequent days for about 5-7 days I felt rough but was able to function. The first day I couldn’t really function. As Nancy says, I was advised that the first dose is the worst so just prepare not to do much for the first few days after the first dose. As for psychology – I’m finding focusing on lifestyle changes I can make helps me feel a bit more in control. Am reading Anticancer living which is quite inspiring. I also had a counselling session the other day which really helped me let off some pressure. Hang on in there.

Wishing all of you strength 

Lisa xx

[FayeL]

Hi everyone,

I hope you're all ok, and continuing to recover well from surgery. 

I'm grateful to hear of others experience after surgery, especially with the prospect of some cancer still being present. My bloody surgeon spent all of our previous meeting telling me why I should be getting a single MX not a double, and therefore I didn't get to ask any of these types of questions or anything about recovery etc.  I've now asked for another surgeon as I was feeling so anxious and uninformed from all my previous encounters with her.

I haven't actually met the new surgeon yet, so now anxious about having all this up in the air so close to the end of chemo.

I am also having a bit of a nightmare on EC, I think the physical symptoms are similar to the previous lot, but it's completely battering me mentally. Literally fully tips me into a very hideous depression for about a week...I realise now that it passes about day 8-10 but still, no fun whatsoever. 

Hey ho, it's the last chemo so I can hold onto that...can't believe the last 5 months have actually gone as quickly as they have, and I am super excited about having the PICC line out and having a massive bath!! I might even try and get a swim in before surgery!

Wishing you all loads of love & all the best for your continued healing. Xxx

[Nancy.B]

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

[KMS2022]

Sorry to hear that you are having to continue a form of chemo after radio @Nancy.B . Equally its positive that they have treatment to ensure the bugger stays away this time. This journey is tiresome at times but we keep chipping away x

I have my lumpectomy on Tuesday 21st. My scans so far show a complete radiological response but, like you, I have been warned there may be some “live” bits in the pathology. If so i will be put on a chemo

called Kadcyla. I’ll deal With that hurdle when i come to it though.

Sending love to all x

[Nancy.B]

@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

[LauraR]

Hi,

@bearcat hope you’re feeling okay after surgery yesterday and glad that bit is over. My tip is keep doing your physio exercises (hopefully they gave you them post-op) and bamboo pillows are great to rest on, soft, keep cool under armpit and also bamboo camisoles for same reason on skin and easy to get on and off.

I wanted to ask you about bisphophonates (once you’re feeling better)... when you said you couldn’t get out of bed, was that tiredness, pain, sickness....? I was due to have mine with last chemo but vit D was too low. Having supplements then due to start in few weeks -want to prepare myself.

Just thinking: has anyone any magic tips they found for mental health, surgery, chemo, radiation, tablet treatments... that they wish they knew before?

maybe someone can get some use out of them...
Laura

[Yorkie51]

Hi @Meanegg 

Thanks for jumping in, sorry you've had to go through all this too but it helps to hear how others have faired. Hope your doing ok.

Mine started after my 3rd cycle (6 X 3 wkly EC), had my last 1 a month ago. Presuming it will just take time but due to start bisphosphonate tablets so thought I would see if anyone else had the same problem.

Thanks again, take care.

[Meanegg]

Hi, I hope you all don’t mind me gate crashing this thread! I belong in the October one but read your post @Yorkie51thought I would share my experience of this.  This happened to me but only after my 7th & 8th cycle (I had 4xEC followed by 4xPaclitaxel).  It made me a bit nervous to eat anything at first as the sensation of it getting stuck was a little alarming but it cleared after a few days - I tried Gaviscon which seemed to help a bit. I didn’t experience it at all during the earlier cycles.  Hope it sorts itself out for you soon.  

[Yorkie51]

Hi all,

Hope everyone is doing as well as possible, good luck to those yet to have their ops. 

For anyone that has finished chemo: did any of you have a problem with swallowing/feeling like food stuck just after swallowed at any point? If so did it eventually go? 

Thanks 💕

[bearcat]

Hi all

I hope you are all bearing up. It’s a bit of a roller coaster to be sure. Having finished chemo in early Jan, I had my first zolendronic acid infusion about 10 days ago and I found it impacted me more severely than the chemo – I couldn’t get out of bed the day afterwards. But I understand the first time is the worst, so hopefully the next sessions will be better.

This Friday I’m finally having surgery. Having opted for mastectomy and a reconstruction using the back muscle, I’m having a few wobbles about whether I’ve made the right decision. I know the mastectomy is the right decision, but I’m worried about the impact of the reconstruction on my back. Still, there were no really good options for me given I have to have radiotherapy and I suspect that if I’d decided for different surgery I’d be worrying about that!

I had a counselling session this week which was hugely helpful to let the pressure off. If you can access it, I would highly recommend it. Maggies centres around the country offer it.

Take care all – almost Spring 😊

xx

[KMS2022]

Hi @Amy123 

My last chemo was on January 24th. The surgeon told me that they like to leave 4 weeks between chemo and surgery to allow the final chemo to “do its stuff”. My surgery is exactly 4 weeks afterwards. 

I had 1 lymph node enlarged on the ultrasound when i was first diagnosed. They biopsied it and it came back clear. On subsequent scans, they look ok. They are going to test them anyway as part of surgery. 

xxx

[Aliwoo82]

Hi @Amy123 I’ve not got a date yet - I saw the surgeon on Monday who told me they’re currently booking the middle of March, but because I want a reconstruction I need to speak to the plastic surgeon. I’ve got an appointment with him in 2 weeks, so hopefully I’ll have my op by the end of March. I finished chemo yesterday so I’m waiting for the side effects to kick in over the weekend but so happy it’s the last time I will suffer them! 

I hope everyone is doing well post chemo/surgery xxx

[Amy123]

Hi @Aliwoo82 do you have a date for your surgery? I hope you are happy with the plan. 
Amy x

[Amy123]

@KMS2022 that’s just the best news! I’m so happy for you. Good luck for your surgery. Were your nodes clear? You don’t mention ALND so I’m guessing they were. What date was your last chemo? Just wondering how long you have between chemo and surgery. 
That tunnel seems awfully long and dark at the beginning, doesn’t it, and here we are emerging at the other end, of this one at least. Let’s hope the next one is shorter and brighter. Xx

[MajesticTiger]

That’s great news KMS2022, so pleased for you.

Good luck for your surgery and pathology results 🍀 keep us posted with how you get on.

🫶🏼💗 xx

[KMS2022]

So after having a meltdown yesterday, I saw the surgeon in the afternoon and was told that chemo had “melted my tumour” and there was no trace of cancer or the lump on my mri. I am over the moon and in shock too!

I am still having surgery - a lumpectomy on Feb 21st - and they will check the pathology from that there are no microscopic bits floating about. I will then have radiotherapy as a “belts and braces” approach.

Finally i see light at the end of the tunnel! x

[MajesticTiger]

Hi FayeL, sorry to hear about your bad MRI experience, I guess when the nurses are concentrating on their training, compassion might sometimes be forgotten. Great news that the results of your MRI were positive 👍🏼

FayeL, Lollynewme and KMS2022, I’ve also lost my eyelashes and most of my eyebrows, however, mine were quite fine/thin naturally and I wear glasses, so my eyebrows get hidden behind my glasses frames and I never wear make-up, so don’t notice my missing eyelashes too much.

Hopefully they will grow back fairly quickly for us all 🤞🏼

FayeL, it sounds like you are still at the start of all your treatments journey, so good luck with the rest your treatments, I hope it all goes smoothly for you  🫶🏼
I’m nearing the end of my active treatments, it’s been a long 10 months since I was first diagnosed but when I look back at how much I’ve gone through, it has honestly gone in quickly, so hopefully yours will too.

Lollynewme, sorry you’ve had bad side-effects with the Filgrastim injections, I had to inject myself with Filgrastim for 7 days after each of my 6 chemo cycles and I was so happy when I finished them for good, as they really make you feel yucky, so I can sympathise with how you are feeling.  I’m having the odd hot flush, so a fan is my friend at the moment.
Our emotions are all over the place going through these different treatments, it is only natural and we need to be kind to ourselves - you are all doing great and we will all get through this 🫶🏼

Lollynewme, I’ll be going onto Tamoxifen once I’ve completed my Radiotherapy (currently halfway through), so hopefully the side-effects of this hormone drug will be minimal for us all 🤞🏼

KMS2022, congratulations on finishing your chemo and ringing the bell 🔔 it’s a great feeling.

Wishing you good luck with your Surgeon appointment today - hopefully your Surgeon will ease your worries and have a good surgical plan that you’ll be happy with 🫶🏼

Good luck to everyone as you near the end of your chemotherapy treatments and as you move forward to whatever your next step along your treatment journey is 🍀

🫶🏼💗 xx

[KMS2022]

Hello everyone!

Just caught up with all the posts. Hope everyone is ok?

So I finished chemo last week and rang the bell - Yay! 3 x EC plus 12 paclitaxel and ongoing phesgo injections.

I found the final couple of rounds of PAX really tough because i was quite simply exhausted but it’s done now 😊

I cold capped throughout and have kept about 70% of my hair. It is already growing back thick and fast in the areas that had thinned out. I currently have no eyebrows or lashes though which is a bit odd!

I had a breast mri yesterday and i’m with the surgeon today to plan surgery. I’m terrified! I’m terrified what the mri will show (even though the u/s early December showed a 60% decrease) and I’m terrified what he will say to me. I actually dont even care if i have a lumpectomy or masectomy - i just want it gone! So why am i scared? I hate feeling like this xxx

[Aliwoo82]

Hi all, 

I hope everyone is doing well after their final chemo sessions / radiotherapy / surgery! I’m on the countdown of the last everything - my final chemo (for now at least) is on Thursday and I’m so excited to ring the bell! I’ve also got my appointment with my surgeon tomorrow finally - it’s the 4th appointment I’ve been given as all the others keep getting moved! I just want to find out what they’re going to do, what reconstruction I can have and when it will be! I’m looking forward to having a few weeks of normality! 

I think in some ways the hair loss is the worst - I found losing my eyebrows and lashes harder than my head hair! Im sorry the radiotherapy people are making you uncomfortable. My children are more conscious of my bald head and not wanting people to see, although my son will whip my hat off every now and again! Even yesterday once we’d completed parkrun (walking it) I was having a photo with a friend and he pulled my hat off! But as long as they’re happy I don’t mind. Im hoping once chemo is finished it’ll start growing back - I’ve read it starts to return around 3 months after, and my hair usually grows fairly quickly so I’m crossing everything I’ve enough to not need a hat during the summer! 

good luck to everyone this coming week for your last chemos/ more radio/ general recovery! 

[Lollynewme]

Just wanted to say well done/congratulations to all who have finished their chemo/ had their surgery etc.Nancy I hope you’re ok and not in too much pain. Faye and MajesticTiger sorry to read of your difficult situations you’ve had to face. My eyelashes have gone and eyeshadow is my new makeup go to - my eyebrows have nearly gone so need to start drawing them on - I look in the mirror and don’t recognise myself at times like Faye said we just have to take a deep breath and carry on, but some days are tougher than others. Good luck to all who are getting their results this week etc.I spoke with my oncologist this week and I was HER2+ stage 2 grade 3 and he said I could find out the figures from my oncotype test ie I scored 32 for the test so I could find out the % of reoccurrence in the next 9 years, but after thinking about it I’m not going to find out just want to move forward and live life after this and not think of percentages of reoccurrence. 

For some reason this week I’ve been really teary every day, the filstagrim injection last Friday came out with horrible side effects again on Monday so this week I’ve just been indoors with no energy and aching and constant hot flushes day and night - the night sweats are horrible as you just can’t get a full nights sleep, but up every day and keep pushing through. I have my 15th dose of chemo this Thursday and this will be my last chemo, then I go on Tamoxifen 4 weeks after for 5 years with more surgery in 6-8 months time on reconstructed boobie to sort out the issues caused by the fat nacrosis after my massectomy.  So many emotions at the moment - feelings of reaching the milestone of my last chemo of excitement/relief, cutting the strings with the lovely nurses who have cared for me for the last 6 months and saying goodbye to them. 

Faye I think you’ve got your last one if EC too and I hope all goes ok for you. 

Hope you all have restful weekends and a good week next week x💪🎀💕

[FayeL]

Well done on getting through surgery @Nancy.B , I hope you're continuing to feel better each day. 

@MajesticTiger I'm sorry the changing facilities at your radiotherapy appointments aren't up to scratch, these things really make a difference to our experiences/emotional state don't you think? I had an MRI last week, and unfortunately the 2 nurses were training & I was manhandled fairly badly and talked over like I wasn't there. It's fine really, and obviously people need to train, but I was already a bit anxious & that didn't help at all!!

And having been pretty blasé about my appearance, now my eyelashes have gone I can't really look at myself or go anywhere without a heavy application of eyeliner! 

I guess it's like the rest of this, we just have to take a bloody deep breath & get on with it. I hope the rest of the radiotherapy appointments go smoothly for you.

I got the results of the MRI this week, which were good, no visible sign of the tumour, but I'm not quite setting of the party poppers yet as I know I've got a lot of treatment ahead of me, including my last 2 chemo's, surgery, radiotherapy, immune therapy, preventative surgeries for the dodgy BRCA gene.....! But it is good news I suppose so I should focus on that!! 🙂

I hope you're all feeling well and enjoy your weekends. Xx

[MajesticTiger]

Hi everyone, hope you are all feeling well on this Saturday morning.

Nancy, that’s great that you’ve had your surgery now (it’s another step along the way) - hope you are not feeling too sore and hoping you get a good pathology report (fingers crossed for you that no more surgery or chemotherapy will be needed 🤞🏼).

I have just completed 5 out of my 15 Radiotherapy sessions so I’m one third of the way through.  So far my skin is holding up well so hopefully that’ll continue.

The bit I don’t like is that there is no separate changing room to get ready for the radiotherapy sessions - there is just a small screen to get changed behind (in the same room as the radiation machine and the nurses) and I’m very self-conscious about my hair loss 🧑🏼‍🦲 (only my husband, son and wig hairdresser have seen my head since loosing my hair), so I don’t like the way the nurses can see me swapping between my wig and my headscarf before and after each session (and I have seen a couple of them watching me, as the screen isn’t very well positioned) - I just don’t like the lack of privacy you get.

For some reason I am more self-conscious about baring my scalp than baring my breasts (go figure) 🤷🏽‍.

(When I had my initial CT & Planning appointment in the same place, there was a proper changing room you could use, which felt much more dignified.)

For everyone else who is still going through their chemo, I hope your side-effects are manageable and you are ticking off those sessions.

Have a lovely weekend everyone.

🫶🏼💗 xx

[Nancy.B]

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