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November 2020 Chemo Starters

Shi
Community Champion
Community Champion

Re: November 2020 Chemo Starters

❤️Please phone your rapid response number and check with your team in case it needs antibiotics ❤️ always best to rapid response anything during chemo it’s not like normal and your team has seen it all before so always check with them for anything, they don’t mind they want you through safely ❤️💕💕Shi xx

1004103
Member

Re: November 2020 Chemo Starters

Hi, I’m Ali and very late to join the thread 🙈

I started FEC-Docetaxel-Trastuzumab treatment on 18th November.

After being violently sick with my first treatment, my antisickness meds were changed & apart from hair loss I haven’t really had any side effects.

I’ve had to give myself filgrastim injections throughout which I find difficult (mentally) but have got on with it and kept pretty much upbeat throughout.

I had my 4th cycle including Herceptin on 20th Jan and it has bloody floored me. I was fine for 2 days after but then just about every ailment kicked in one after the other & here I am 10 days later feeling worse than I did on any of the previous cycles.

I’ve gone through the aching bones, kidney pain, stomach cramps, constipation, diarrhoea, mouth ulcers and am now sat here with a burning rash which has turned to blister in places. 

Is anyone else experiencing this? Am I normal?

look forward to some feedback 🙂

 

charlotte3112
Member

Re: November 2020 Chemo Starters

Feline friendly sad news about your dad I hope you can stay strong and get through this. It’s a lot to accept in such a short time, everyone will be thinking of you stay positive 🙏💕

marblecake22
Member

Re: November 2020 Chemo Starters

Feline friendly I am so sorry to hear the news about your Dad. As others have said, there’s never a good time and whenever it happens , even if expected ,it’s very hard. Please take good care of yourself ♥️

ive done my 3 doxetaxal ( I know I’ve spelt that wrong!) and now on FEC - definitely more queasy on FEC. I feel sick but am hungry think ‘ oh I fancy that’ go to eat it and it tastes vile. I’m really struggling with this as I love my food. I find myself putting a truck load of salt on stuff just to get some taste. I am craving a Chinese takeaway but the end is in sight and it will be one of the first things I do when I can. 

I know what you mean about functioning vs actually wanting to do stuff - I’ve found that quite hard. With me there’s the depression also so it’s hard to tell if it’s the chemo or that or both. 

I’ve been told it’s best to have my covid jab in the last week before my next chemo but whether it can be timed like that I don’t know. Not heard anything yet but our area is quite behind.

 

stay safe everyone xxxx

ELLEGEE77
Member

Re: November 2020 Chemo Starters

Felinefriendly, so sorry to hear about your dad. 

Sending you lots of love and hugs xxxx

fionafayker
Member

Re: November 2020 Chemo Starters

Hi Feline Friendly, 

So sorry to hear about your dad, but you got to speak to him and he is no longer in pain. 😘😘

I had round 4 of 7 chemo treatments last Thursday,  1st of Docetaxel.  I'm feeling ok, only really tired, and a nasty metallic taste in my mouth.  I have had achy muscles in my legs and shoulders,  but nothing too annoying.  

I have a taste for salty foods like hotdog sausages and savoury biscuits from Australia. Normally I have a sweet tooth, but don't really like chocolate or biscuits at the moment. Or even tea or coffee,  only iced water!

I spoke to the oncologist on Monday.  She said I'm due to have a CT scan at the beginning of March, then after my chemo finishes the end of March, with 4 weeks or so to recuperate,  ill have the mastectomy, so I'll be completely flat. Then 3-4 weeks after the op I'll start radiotherapy. I've not heard about having the vaccine yet, but the nurse who flushes my line said that some of her other patients had heard so hopefully I'll hear something soon!

Spring/Summer is coming and our treatments are rolling along, good luck and hugs to everyone! xx

 

 

MayC
Member

Re: November 2020 Chemo Starters

Hi All

Feline - so sorry about your Dad. There's never a good time to loose your parents, but it must feel like the world is throwing everything it can at you right now.

I saw the phrase 'The Devil said to the warrior, you cannot withstand the storm, and the Warrior replied, 'I AM the storm'. It's kinda giving me strength and fight right now. If I was a tattoo-person, it'd be up there as a possibility! Big Hugs 🤗 

I had my first Carbo/taxol last Tuesday. And I can't believe how good I feel. Well, I suppose it made me realise how crap I felt on EC. Maybe because I got used to feeling so bad, it became normal. I think I'd say, in retrospect, I 'functioned' on EC, whereas the morning after Carbo/taxol I 'wanted' to do stuff. 

It's only the first one, so remind me I've said this after 11 more sessions...🙄 

I also got a text from the NHS re Covid vaccine, so I'm booked in for Monday.

I'd asked BCN about it, and she said 'ideally' either just before or just after treatment (not sure on the science around that) but if I were to get offered, take it whenever. She said, so far, it didn't seem like people were getting much choice, (apart from one woman, who BCN thinks is 'mates' with her GP!) so I was surprised to get offered a choice of two local centres, and two days with lots of slots. Vaccine doesn't solve things, but a step in the right direction, I think. Will let you know how it goes!

LadyGaga72
Member

Re: November 2020 Chemo Starters

Feline friendly, so sorry to hear of your Dad’s passing. He is at peace now and no more suffering. I’m pleased you were able to speak to him before he went. It’s hard to take when you are going through tough times with your own health issues. I lost a dear friend too a couple of weeks ago and that is hard enough. Fortunately I had spoken to her about a week before she passed, so that is a comfort to me.

As somebody else on here mentioned we are all super women, the things we are dealing with at the moment. I have two more Taxol treatments left, plus five radiotherapy treatments and five more herception injections. It’s a long drawn out treatment but feel I can see a bit of light at the end of the tunnel now.  I’ve been lucky in not having many side effects up until now but still very much taking treatment by treatment. 

I’m awaiting my covid vaccination at the moment. Has anyone else had theirs yet? Keep strong and positive everybody, we’re nearly there.

Helen x

charlotte3112
Member

Re: November 2020 Chemo Starters

Hi all just a quick update now I’ve done 1st docetaxol and I’m now at day 17. The first 4 days was a doddle then it was as if I’d been run over by a bus worse for me than FEC. Sugarpiesan all the things you described was the same for me and I agree the WBC injection make it worse, but you’ll get through.  Then at ‘nadir’ when all your immune system has gone between day 7 and 10 my body just offloaded everything into the loo with lots of stomach cramps, but then slowly my own immune system starts to come back and each day I felt a bit better. I’m now on day 17 and feel normal I can taste my food and the pains have gone but it’s a lot slower to leave my body than FEC it’s a real beast. My next cycle is Tuesday but I know what to expect and I’m hoping they will lower the dose. We’re all nearly at the end of this crap that we can see spring time and sunshine, stay strong and make sure you eat nutritional foods to build your body back up after these wipe-outs - stay safe we’re nearly there 💕💕💕

aqua76
Member

Re: November 2020 Chemo Starters

I’ve just had my 5th chemo, but it was my first time having docetaxal. Felt ok Wednesday/Thursday, much less nausea rush when on EC. 
ive got quite a bit of phlegm (lovely!!) and a few neck pains. I’ve heard it can be a bit flu like. 
just taking each day as it comes to be honest! 
I did remarkably well getting through the EC so hoping this one won’t be too bad 

Sugapiesan
Member

Re: November 2020 Chemo Starters

So very sorry to hear this sad news feline. I lost my dad to cancer 12 years ago xx 

I had the first of 3 docetaxel last Wednesday after having 3 x EC. I’ve had a lot of pain in my joints, bones and muscles which started Saturday. The worst of it lasted for 48 hours all Saturday and all Sunday day and night excruciating pain. I took paracetamol and ibruprofen Saturday night to get some sleep and managed a couple of hours. We rang the on call team on Sunday and they said I shouldn’t be taking ibruprofen so had only paracetamol on the Sunday night, needless to say I was in agony and if I slept for one hour I’d be surprised. On Monday morning I rang my GP and she said that I can take ibruprofen I just need to protect the stomach with food and she also gave me a drug to help protect the whole gasto intestinal tract. I already have stronger than over the counter ibruprofen from my lumpectomy and she was happy I take that along with paracetamol and codine, again a stronger version left over from the op. She also did me a prescription for Niprene which is a stronger anti inflammatory in case the ibruprofen doesn’t cut it. I checked with the Macmillan breast nurse and she was happy with me having ibuprofen too. So not happy with the on call service at all!!  The Macmillan nurse also said it’s likely this reaction is from the injections I have for 7 days after each chemo rather than the chemo itself.

Ive been taking paracetamol/ibuprofen since Monday at night only, the pain magically disappeared Monday morning for most of the day time hours!! Seems to come on in the evening when I’m relaxing. Today’s Thursday I’m going to try going without but will take in the night if I have to. 

on the docetaxel I’ve also been feeling unwell in my upper chest around my heart and top of my lungs just feels bllluuuggghh! Don’t have any motivation to do anything! 

How is everyone else fairing on these treatments? Xx

ttyler
Community Champion

Re: November 2020 Chemo Starters

Hi Felinefriendly,

Sorry to hear of your Dads passing I hope you are okay. I am glad you got to speak to him before and that you were comforted when he told you not to worry. I bet he too has been so worried about all you have had to deal with over the last few months and in a way you are now able to focus more on yourself. Stay positive we are all here for you and I know your dad will be with you as will your mum spiritually.

 

 My mums partner passed away in July 2019 at 57 years old from a bleed on the brain. I was diagnosed in March 2020 and my mum swears that Mary died so that she would move closer to me to take care of me when I got cancer. Everything happens for a reason, I’m a true believer of that. I knew Mary was with me holding my hand on my journey you. In fact I had my second treatment 12 months to the day that she had the bleed and then finished all my treatment on her birthday. I am not a religious person really but it’s like we are given these challenges in life maybe at first it seems like everything comes at once, however there is some relief along the way to ensure we can deal with it. As one of the other ladies has said we are Wonder Women and to me true warriors!

 In regards to the feeling hungry, I was the same and although I did not pig out I did put on over 2 stone. I am gradually loosing it now I have lost around 12lb since the end of September. It’s all I seem to hear at the moment from my oncologist is you need to try and loose weight 😝 I will get there slowly and I know you all will too. They way I saw it was it was better to have a little bit more weight on me to fight the cancer than to try and loose it and be even weaker.

 You ladies are not too far away from the chemo finish line now. Even if your treatment has had to be delayed for a week to allow for your bodies to heal, let this happen! I know I am not a doctor but I am pretty sure it will have no effect at all and your cancer won’t start to grow again. You can do this.

 

 Have a lovely evening, take care! Love ❤️ Tara xxx

Jojo1447
Member

Re: November 2020 Chemo Starters

Hi

I recently had appointment with oncologist and after examination he couldn't find the lump which is encouraging.

I am triple negative and completed 3 rounds of EC now on weekly taxol and carboplatin every three weeks.

Half way through this weekly treatment now, however my bloods are all over the place.  Recent on yesterday my platelets are still too low, so after missing last Fridays treatment it was agreed to defer tomorrow treatment for a week to give me time to build my platelets up.  I just worry now that this will interrupt the shrinking of the tumour.

I'm more frustrated about not being able to have treatment, as other than my bloods i can honestly say i haven't suffered any side effects of the chemo other than hair loss and 2 days of fatigue, hope to continue like this.  So sorry to hear the people on here suffer and count myself quite lucky really that i have been able to continue to work full time from home.  Although i must admit i do use the treatment as an excuse not to do household chores lol.

Love to you all

 

Jojo x

Shi
Community Champion
Community Champion

Re: November 2020 Chemo Starters

Feline friendly ❤️So sorry to hear of your dads passing ❤️ I’m glad you were able to speak to him and have got some comfort from the call. Take everything day by day and everything in your own way ❤️💕💕Shi xx

aqua76
Member

Re: November 2020 Chemo Starters

So sorry to hear this 😞

sounds like you did so much to look after him in the last few years. But also sounds like he has some peace now. 
just think on all the happy memories you have with him. 
And as hard as it is, you need to stay positive for yourself right now as well. Xxx

i too had my 5th yesterday. We are all getting close to the end. I feel like we can start to see the light at the end of the tunnel

stay strong everyone. We are all dealing with so much. And in a bloody pandemic. 
we aren’t just women, we are super women for doing this!!! Xxxx

Felinefriendly
Member

Re: November 2020 Chemo Starters

Hi everyone 

My dad passed over at 12.15 jan 26th

Its a relief to be honest.... Pretty quick and no morw struggling his body had given  up several issues going on not covid.... Am up and down but he be with my mum now and he missd awful for so much for past ten years 🌹❤️🙏

I got to speak to him as dr took ohone to him was hard to hear much as his breathing was bad i told him i live him and i heard him say stop worrying about me so that brings me great comfort. I had looked after best i could padt ten years till in the march last year well just beforw he moved into care hime as i was finding it difficult as im in my own with 4 kids... He kept falling alot and in the night so he actually wasnt safe in his own anymore

Dont be too hard onyourselfs hard to be positive every single day xxx 

I had number 5 today and see surgeon appointment in feb, i relly am eating an awful lot am suprised at this... But guess the lock down as well life seems revolve around onkine shopping and cooking and eating and appointments and home schooling 🍳🛒❤️🏡😋💞

Very grateful to the nhs and all the nurses and the drs  💗 and to the kind people ive met on this journey since oct and all u lot on here and onkine groups and strangers even xxxxx

 

 

marblecake22
Member

Re: November 2020 Chemo Starters

Hi all

firstly love and hugs to all of you - this is such a rough time for everyone with all that’s going on. ♥️

guess we are all at that mid way stage when our lumps etc are being measured. I was back at hospital today. Mine is going but it’s ‘honeycombing’ so although it’s going the size /area is still there. It was large to start with at 4cm. Anyway as a result I will defo be having a mastectomy. I am ok with this - I don’t think I would have been happy with anything else tbh. Surgery will be April time all being well but I will defo have to have radiotherapy due to my lymph node involvement. I know they are throwing everything at me and it has to be done but it just feels like there is no end in sight sometimes. I should be feeling positive as it was all presented that way today but it’s hard when you get home and start mulling over stuff. 

hope everyone is keeping well xx

aqua76
Member

Re: November 2020 Chemo Starters

@Felinefriendly lots of hugs to you lovely.this whole Covid thing is just so awful. And especially for all going through this. No hugs. No family. It’s a bloody nightmare!

im having to give my parents updates (and even the whole diagnosis!) over the phone/FaceTime. Nobody should ever have to hear stuff like that remotely. Awful!! 

@belinda_f - I had an ultrasound early January, just before my 4th EC injection. My tumour shrunk from 27/28mm to 16mm. Everyone was pleased but I don’t have any frame of reference. Is it a ok/good/expected/great rate of shrinkage?? I should really ask! But I’m happy it’s gone down!!

 

Ive now finished my four EC treatments. Phew!

back to hospital tomorrow for number 5/8! Can’t believe how quickly it’s passed.
moving to Docetaxal and two others (the mabs) so back to square one in terms of reactions and side effects! Going to be a long day as they are going in one after another plus time for checking for reactions!

i think I’ve been very lucky with the EC. Only had a few down days and minimal side effects. Hoping and praying next four are similar, if not easier. 

love to all you amazing ladies!!! Xxx

ann has cancer
Member

Re: November 2020 Chemo Starters

Hi Belinda, I was a June 2020 starter and my shrinkage started after my first dose of EC both in the boob and axilla, so your first scan should give you some really positive results, here's hoping. 

Felinefriendly, so sorry to hear your news, thinking of you

Love aNN

ttyler
Community Champion

Re: November 2020 Chemo Starters

Hi Belinda,

 I’m afraid I can’t help much with the shrinkage question because I had surgery first before chemo due to the restrictions in place in the first lock down. As Amy C has said though, I think there can be shrinkage pretty much straight away for some people with chemo or for some people it may only be very slight depending upon your body. 

 As we are all made up differently and have different dna I suppose it just depends how well your body reacts to it. I assume no treatment can be said to be 💯 percent perfect for anyone, however we all hope that we will have the best results. You will be monitored very carefully and if there is any cause for concern then they will change it to give something that better suits you.

I wish you luck with your treatment and keep my fingers crossed that there is some shrinkage when you have your scan.

 Lots of love ❤️ Tara xxx

 

MayC
Member

Re: November 2020 Chemo Starters

Hi Feline, so sorry about your Dad. The lack of contact is tough isn't it? My Father is 83, and lives in a pretty remote bit of Ireland, so I haven't actually seen him since summer 2019. (I was planning to go in March/April 2020, and the the world went silly...) He spent a few months in hosp last year, and it was so difficult to get anything done. I was lucky as my brother dealt with a lot of stuff, and managed to get a few zoom calls organised by various nurses/social workers. Hope you can get phone calls, at least. Big hugs.🤗

BelindaFleur - I've just finished 4 EC's, moving onto Carbo/taxol next week. I had shrinkage start after the first treatment, and now can't feel anything to the touch. I had a ultrasound last week and lump is still there, but under 1cm (down from 4cm or 5cm, depending on who I speak to!) I'm Triple Negative, so maybe that makes a difference, I saw Oncologist and BCN last week too, and I got the impression they seemed a bit surprised at the reduction, but definitely pleased. I think it's all very individual though, and some people respond better to different drugs. I didn't get a scan until the end of my EC's, so that just proves that point! 

Good luck with your scan - hope all goes well 🤗

Belinda_F
Member

Re: November 2020 Chemo Starters

Hello everyone, 

Do forgive my interloping, I'm actually in the January 2021 starters group but have a question and thinking you guys might be able to help me with it? 

Firstly though, @Felinefriendly I'm so, so sorry to hear about your dad, that's heartbreaking for you all and made so much harder that you can't visit him. A friend also had his dad in hospital just before Xmas and he was so elderly he wasn't able to facetime or whatsapp videos, so I do hope you can and ask the nurses to help him with the tech if needed, as you'll both get so much strength from it. You're both in my thoughts x

Guys, can you help, I'm her2 triple +, had 2 ECs so far, lump 20mm, got my first scan on Wed... Feeling like I can't hope for much shrinkage at this stage, but wondered what your experiences were? Did you see any reduction or did that come later, or not at all? It's quite nerve racking isn't it the first ultra sound during treatment... Thanks so much and do hope you don't mind me popping on. 

Hugs x

 

 

ELLEGEE77
Member

Re: November 2020 Chemo Starters

Oh felinefriendly I'm sorry to hear about your dad too.

It is all so difficult at the mo, I can't imagine how you feel. 

Thinking of you and sending you loads of hugs. Xxxxxx

 

 

 

LadyGaga72
Member

Re: November 2020 Chemo Starters

Hi Feline friendly,

I’m sorry to hear about your Dad, such a worrying time for you. FaceTime sounds like a good idea if your Dad is up to it. I agree doom and gloom everyday with Covid on the news, makes you wonder when we can be together with our loved ones again. 

Keep strong. Thinking of you and praying for you.

Helen xx

Felinefriendly
Member

Re: November 2020 Chemo Starters

Thank you both ladies for your replys

 

Im ok..... Im prepared for the worst 

My dads had alot health issues over past 10 years since my mum passed away..... Hes done very well considering he will be 90 in april.......

I think its the covid thing on top where hes been in a care home to so ive had limited visits in the garden with him and then got ny diagnosed in oct so we havnt been able to have as much contact as would of liked

 

Thanks for replying i appreciate it very much xxxx

 

ttyler
Community Champion

Re: November 2020 Chemo Starters

Hi Feline friendly,

Wanted to send you hugs at this difficult time. I can only imagine how you must be feeling right now and wanted you to know I am here for you!

 

Try not to stress about the home schooling, I know we all want our children to do well and not fall behind, I’m the worlds worst I work in a school and still beat myself up when my boys don’t get every piece of work done. In reality at school there would only be a time period of around 45 minutes each lesson and then it is stopped and continued at another time if not completed. I know the younger ones only have about 25 minutes a lesson and sometimes in my class we don’t get any written work done if the children have struggled to understand the concept. Sorry to waffle on I just wanted to ask you to take time for yourself, be kind, you are going through treatment and have a lot to deal with, with your dad. 


 I do hope you get to speak to your dad and get to see him. This virus is just causing so many problems. Maybe someone could get a phone to him so you could face time each other.

 I will keep you in my prayers, stay strong 💪 

 love ❤️ Tara xxx

Shi
Community Champion
Community Champion

Re: November 2020 Chemo Starters

Feline friendly just wanted to send 👭hug, sorry to hear about your dads diagnosis❤️ You have a lot on too yourself with your treatments and home schooling so be kind to yourself ❤️ You are doing amazing and focus on getting through your treatments ❤️ Hopefully your dad will have supportive team taking care of him so they are looking after him for you for now ❤️ And will keep you advised, it’s not perfect situation but trust them to look after him for you, while you concentrate on you a bit ❤️💕💕Shi xx

Felinefriendly
Member

Re: November 2020 Chemo Starters

Hope everything going ok with everyone

 

Bit low at moment my 89 year ild dads in hospital and not good.... Found out he has bowel cancer today.... He went in for problems with toilet but also has other issues ongoing and chest infection 

Its not looking good and i cant even visit 

Obviously because im having chemo too

But feel bad that hes in his own in there but theres no visitor policy 

Was keeping pretty positive about my self up to today

Feeling tired and doing home schooling... 

Doom and gloom every day in the tv

No date for operation as yet 

Had 3rd round out of 9 on wed just gone 

Week comes back round really quick

 

Hope u all ok guys.... Keep safe xxxxx

 

 

Felinefriendly
Member

Re: November 2020 Chemo Starters

Hi Charlotte and everyone else

 

Good to hear your update 

I just had my 2nd taxol(2nd of 9) on wed just gone.... Will be once a week now until start of march 

Im finding it much easier too than the first 3 of the other drugs i had

I have injections for 3 days after and it was 7 before with the other 

I see some surgerys are being cancelled and postponed in the surgery section which is worrying

I have yet to have surgery... Chemo first is my treatment plan and im triple negative 

I have no date set for operation yet but ive been given 2nd march as last chemo session... Will ask dr when next see him in about 3 weeks.... 

Obviously a scary time for us all but i try not to get fearful

Hope everyone is keeping as positive as possible and staying safe and also your mental health...... Looking after yourselfs in small ways you can 💐🌠💫😍🙏💪😊💞🌅

 

charlotte3112
Member

Re: November 2020 Chemo Starters

Hi ladies hope you’re all getting through this with as few side effects as possible. I had my PICC line fitted its amazing so easy I wish I’d had it done from the beginning and saved my poor veins crashing and now cording from the cannula but better late than never. I had my 1st cycle Taxol now the FEC is finished and so far so good. Although they’d forgotten to give me steroids for the day before the cycle, luckily I was having bloods done the day before so had to take 8 that day. It was all a bit confusing but the pharmacist in the hospital was great and explained it all. I’m on day 3 and apart from hot flushes I’m feeling ok but I have been doing 8 steroids for the past 3 days which keeps me active I start the dreaded 5 day WBC injection today which I find awful and days 5/6 are usually hard for me. But I was expecting to feel worse on T so I’m quite pleased onwards and upwards only 2 cycles left to go and apparently my friend says I’m not allowed to count the last one 🤣. Hope your cycles are going ok and if any of you are moving into Taxol my experience (so far) early days has been good. Stay safe ladies and stay positive 💕💕

 

Smilodon
Member

Re: November 2020 Chemo Starters

Thanks everyone for your helpful feedback on the lump vs mast debate. I am very nervous about surgery and I think when the surgeon suggested a lumpectomy I was relieved thinking it would be a simpler surgery and easier recovery. My oncologist and nurse were not impressed, however. 

I won't be having reconstruction either way - I really want the simplest possible surgery. I'll be having a complete node clearance which I am also anxious about. But in the end, reducing the chances of recurrence is most important. I'm stage 3, so the risk is quite high. 

Doesn't help that I still have a chronic incision wound 6 weeks after my port insertion. Dr thinks it might just not heal while I'm on chemo. This was a little itty bitty surgery and it's causing me a lot of grief - so it doesn't fill me with confidence!

It's amazing I ever managed to have a baby....

donkeywoman
Member

Re: November 2020 Chemo Starters

Hello @marblecake22 , sorry to butt in here, I'm on the December group, but have a little browse around sometimes. Just to quickly say that I had a mastectomy (had surgery first, now chemo) and it was really fine. I was in and out the same day and, although there is a long scar, lots of bruising etc, pretty unsightly at first, the recovery wasn't difficult at all. I'm not meaning to sway your decision in any way, we are all different and need to make the decisions in consultation with the experts. Just trying to offer a bit of reassurance, in case you do have a mastectomy.

All the best to you 

marblecake22
Member

Re: November 2020 Chemo Starters

Hi all

hope everyone is doing ok? My third hit doesn’t seem to have hit me so bad this time so making the most of it as all change for the next 3 for me ...but hey half way through💪🏼

im going to jump in on the lumpectomy/mastectomy question as I’m going to be in this position also. My consultant has initially spoken about both / all options as it depends on how my lump shrinks or even disappears. I’ve got lymph node involvement so they will defo go. 

part of me just wants life back to normal and I want the quickest route to this be it lump/ radiation or full mastectomy but overriding this is the fear that this will come back - I want to do whatever gives me the best chance of cancer not returning. Although I am already so worried as most of you seem to be back a second time and everyone I meet in the chemo ward is the same. My mental health going forward has to be considered so I’m already pretty much decided I want the lot gone if at all possible. I am not bothered about reconstruction at all so no cost there ..  I’ll happily wear a false boob - I’m not a busty booby person - they don’t define me and I’m 51 so my bikini days are well behind me! 

I just want to be free of cancer - fit and healthy with the chances of it coming back reduced as much as it is possible. I think a mastectomy will therefore be best for me albeit a more major op ( of which I am terrified as I’ve never had surgery in my life)

saying that I’ve still to have these convos with the consultant as I’ve a way to go yet and my hubby will say ‘ they know best let them decide’ - it’s very hard. 

not sure I’ve helped there but that just my ramble! 

Much love to all

Clare xx   

charlotte3112
Member

Re: November 2020 Chemo Starters

Hi Smiloden 

Do some research on choices and be informed so you can make the choice that’s right for you. I first had surgery lumpectomy and full Axillary clearance of 22 of which 10 nodes infected. My surgeon was pleased I’d chosen lumpectomy but I’ve since realised I think this is more down to cost as there’s little reconstruction.  However since my Op I had a private genetic test after surgery for BRCA with color.com  (just a niggling feeling because dad had bc) and on nhs there wasn’t enough family with previous BC to warrant the test.  Anyway long story short I’m carrying the gene so after chemo I’m having double Mx and probably DIEP, I’m not taking any chances and my Onc Agee’s and has already told the surgeon who has just sent an appointment to see him 1 week after last chemo in Feb. I was of the same opinion as you originally to get this over with but since doing the research I’m going to take the long haul. But you decide and make your choice for you, your Oncologist knows this disease inside out and your BC nurse will want you to make sure your fully informed on your choices. Sorry to hear your wound is being awkward and not healing, things are so slow at healing when we’re on chemo. Good luck with your choices 🥰💕

fionafayker
Member

Re: November 2020 Chemo Starters

Hi , I had a lumpectomy and licap surgery followed up with radiotherapy 3 years ago, sadly the cancer came back in the same breast, which I've had removed.  At the time I was happy with that, but I wasn't given a mastectomy as a choice. Knowing what I know now, I might well have asked if it was an option.  I'm not too worried now that I will be having the left breast removed, come April/May. If it stops the cancer in its tracks,  I'm all for it. But you need to do what feels right for you.

ELLEGEE77
Member

Re: November 2020 Chemo Starters

I had the choice of chemo or surgery first and mastectomy or lumpectomy with full clearance. Rads regardless of surgery, altho told radio and lumpectomy is the same as just mastectomy. 

I decided mastectomy (having had one on the other side). For me I felt happier to get rid of everything, esp having already had BC on the other side. I didn't want to give cancer chance to come back in the breast tissue. But the consultant did say if its going to come back it still can come back in the chest wall, but it was the risk I wanted to take. I will have LD flap recon later. I also chose surgery, now obvs having chemo. This decision is yours and what you feel most comfortable and happy with, as it is you who lives with the consequences, I did lots of shall I sharnt I. I'd already lost one boob, so I felt losing the other wasn't a massive loss to me. Lots of friends and family said they'd do what I did, but I think it's different when you do actually have to make that decision. 

I'm homeschooling too, using Google classroom. Which is fun....... Not. We are so alike and last lockdown we butted heads so much. It is going slightly better, as I can give all my attention as I'm not working. And work is being set daily. I'm shattered by the end of it. Not sure how it will go after next when I start weekly paclitaxal......... 

Xxx

ann has cancer
Member

Re: November 2020 Chemo Starters

Hi Jo, I was a June starter but like lots of others had my dose reduced for my last 2x chemo as it was giving me such an upset stomach I was loosing a lot of weight, they work out the dose as weight x height but that doesn't suit everyone and you are better to get a lower dose than get ill and have to delay treatment, mine worked out ok, hope that helps.

 

Lotsa luv aNN

MayC
Member

Re: November 2020 Chemo Starters

No, not my birthday on 24th!

I think I meant that as a new regime will bring new surprises, but not exactly a birthday surprise, or something to be looked forward to - maybe more trepidation. Yeah, maybe that's just me having a ramble...😀😀😀

I should be due to finish chemo on 13th April, and I turn 50th on 28th April. It should be an 'interesting' birthday anyway. Between lockdown, covid and cancer... 🤔 But, at least I'm not on my own in all this. 💜💜💜  

Fab news re your tumour shrinking too. I have an U/S on 18th, so will see what that shows. I can't feel anything anymore, so hopefully things are going in the right direction! 

Just a thought...I was first awake about 7.30 this am, and saw how frosty it looked outside. I thought of my colleagues who would have already been out scraping their windscreens...and felt slightly smug as I got back into my nice warm bed... Gotta grab a positive when you can 👍

Smilodon
Member

Re: November 2020 Chemo Starters

Hi all - I have round 4 on Monday - the last Her/Per/Docetaxel then I move to EC - which many of you are just finishing! Side effects were much worse after the last one and dr is tweaking steroids and nausea meds for this one - hope that works.

I have a port incision that has still not healed, nearly 6 weeks on. I just finished a weeks antibiotics as it got infected. But apparently it may never heal while on chemo 😓 . It's just a tiny wound but quite bothersome and I would be so relieved if the dam thing would just heal and be done already.

I have surgery after chemo and surgeon says there is no additional benefit of a mastectomy over a lumpectomy (I'll be having all the nodes out - already know several are affected). Anyone else given this choice - what did you decide? If the surgeon is confident I'm inclined to have the simpler surgery but nurses and oncologist seem to favour mastectomy.

LadyGaga72
Member

Re: November 2020 Chemo Starters

Hi All,

So lovely reading all your posts and updates, it helps greatly. I find I don’t really speak to anybody apart from the nursing staff when I go for treatment. It’s difficult with covid spacing in a big room. Initially I started my treatment at another Hospital where there only two people in a room, much better for connecting.

Well I took another covid test at the drive in at the Hospital on Sunday morning and had a negative result back on Monday afternoon. I’m still peeved that I wasn’t sent there in the first place and I wouldn’t have to have two missed treatments (which will be tagged on at the end).  I saw the Oncologist on Tuesday and aired my views, very apologetic and assured me that it will not have any impact on my overall treatment. Onwards and upwards, I started my third cycle yesterday, all went well. I agree, I’m normally a very easy going person but now I will say if I have issues with anything regarding my treatment.

I’m sure you will all be fine on Taxol. I have found it ok, no sickness at all, occasional headaches but that’s all. Hope it continues like that for the remainder of my treatment and yours.

I can’t imagine how difficult it must be home schooling and combining treatments, symptoms etc. It’s really tough on school children at the moment. Mine are all grown up and parents themselves but just with a six year old and I do hear my daughter saying how tricky it is even at that young age. 

Keep well and safe everybody.

Helen xx

 

Jojo1447
Member

Re: November 2020 Chemo Starters

Hi

 

i had 3 rounds of ec then moved onto carbo/taxol 18/12.  It seems easier on the side effects although the one on the 31/12 they didn’t give as bloods were showing as liver function too high.  The readings are coming down but still not there yet.  Oncology team are adjusting the taxol to a lower dose as they think this is the one affecting me sometimes does with people they say.  I am worried that not having the full dose won’t be as effective I want it all lol.

hope yours goes ok

 

jo

aqua76
Member

Re: November 2020 Chemo Starters

That’s me done with my EC as well!

i move onto 4 rounds of docetaxal and Pertuzamab and another ‘Mab’ one

ivw been told it’s slightly easier too so fingers crossed!

had some good news yesterday before chemo, had an ultrasound on Monday evening and my tumour has shrunk from 28mm to 16mm 👍

makes all the effort worthwhile!!

is it yr birthday on 24th? On ur next chemo??

Felinefriendly
Member

Re: November 2020 Chemo Starters

Hello beautiful ladies 

 

Hope we all good.... Been reading all your posts..... 

Today i had first session of the Carbo/Taxol. First of 9 i think.

I saw dr yesterday and hes hapoy with my progress and my mir scan i haf one Christmas eve. 

Because i panic a bit and i told them they diluted it more for me or spaced it out more hope that makes sense

 

I found the feeling out control feeling daunting with last 3 of the other sort

 

Can confirm deffo not as bad as i thought id feel obviously early days as only just had it but does not feel as intense as others.

Came home had my tea what id prepared earlier and sorted kids out 

Now tucked up in bed keeping warm

This time only 3 injections to do over 3 days not 7

Still have steroids 

My daughters maent be doing online google classroom tomorrow so that should be fun

My older son is on day 2 of his online schooling hes doing a levels and was meant be doing exams this year 

My other son meant to be doing some college exams this month 

Not sure yet what they will propose hard to stop looking at news and panicking.. 

 

 

But keeping as safe as can.... Still doing online shop and wiping it down with antibacterial wipes 

Spray all me post and packaging too that comes 

Onky attending my medical appointments. 

 

Hope u all doing good.... Keep positive and keep safe xxxx❤️🙏💯👌💋🌟

 

MayC
Member

Re: November 2020 Chemo Starters

Well, that's my EC's done!

Last one yesterday, so on to Carbo/Taxol on 24th Jan. Which, will bring it's own side effects I'm told. Yay.🙄 Apparently it's an easier regime, but we'll see. Despite feeling a bit 'icky' today, I think, in general, I've got off quite lightly with EC, so, knowing my luck Carbo/Taxol will hit me harder! BUT...we're all different, and I guess I have to wait and see. #SoNotABirthdaySurprise.

I'm seeing as this bit as 'the end of the beginning'. A long way to go yet, but everything is a step in the right direction. 

On the PICC line. As soon as I arrived at the centre yesterday, the receptionist started booking my next appts. She seemed in a bit of a rush and said 'right you need a picc line flush in two weeks', and I just said 'yep, and I need one next Tuesday too'. Think I said that with authority (!). Something worked as it didn't get challenged, so I'm good for next week! Knowing my luck, the dressing will probably be OK now😀 I'd still rather not take the chance, given my previous experiences...  

Thanks for your thoughts, Charlotte3112, much appreciated! Big Hugs to you, and to us all!!  🤗🤗🤗

charlotte3112
Member

Re: November 2020 Chemo Starters

Hi MayC

sorry to hear about your experiences at the hospital, I also sometimes feel as though I’m just a number and a burden especially if they’re running late as if it’s my fault. Fortunately I’m starting to be more forward in my approach with the nursing staff and Dr’s  I don’t feel comfortable being like it but I really don’t care anymore. I’m finally having my PICC fitted on 13th after lots of calls and ‘stand offs’ with staff. I’ll be using your tights idea for covering the PICC, I’ve got plenty since not going into work for months now. Now you’ve mentioned about flushing I’ll have to see what they have planned for after it’s fitted, if it has to be done weekly I’ll probably just drive to our cancer centre it’s only 10 mins away so that’s ok for me. 
Stay positive although it’s really hard at times, considering there’s a pandemic and we’re all battling this illness I think we’re all super warriors. We’re doing covid, cancer and chemo the 3 C’s that’d overwhelm most people!! 
stay strong a few more miles to go 👍💕💕💕

MayC
Member

Re: November 2020 Chemo Starters

Thanks Helen, it's always good to know you're not alone, even though it's a crappy journey!

How did you go with Covid test? Hoping you can get in on Weds 🤗🤗🤗

May

LadyGaga72
Member

Re: November 2020 Chemo Starters

May, I’m sorry you’ve had all this to deal with. I know exactly how you feel as I had all those emotions over Christmas and New year regarding lost covid test results and missing two treatments. I really felt helpless. I’m having a covid test at the Hospital this morning (wish I had been sent there initially but was advised to phone 119 and arrange my own test) so hopefully I’ll have results tomorrow and should be on track for treatment on Wednesday (3rd cycle), all going well.  

As regards pic and bloods, mine are done weekly at home, the district nurse comes in which is a great help. I believe some people have to go to the Hospital to have them done. I’m on weekly Taxol.

All the best with your and everybody’s future treatments. 

Helen x

Jojo1447
Member

Re: November 2020 Chemo Starters

Hi

i have a picc line fitted and was told this must be cleaned and flushed and dressing changed weekly to avoid infection.  Speak to your team and tell them your concerns.

 

 I have just gone onto weekly treatment too three weeks ago so this not an issue now but family member was having to do it previously.

MayC
Member

Re: November 2020 Chemo Starters

Soooo......Re PICC lines. How often are you all getting PICC lines flushed, changed, etc?

My Oncology nursie friend (who now, sadly, lives in Australia ) reckons it's standard practice to have this done weekly, and is quite annoyed mine's only supposed to get done fortnightly. Maybe because I seem to be allergic, and need a lot of barrier fluid, the dressings don't stick well. They've usually fallen off before my next appt, so I do worry about infection. I go onto weekly chemo at the end of Jan, so it won't be an issue, but until then...I shall be making my point this week so wish me luck!

Also, just wanted everyone's thoughts about my last Oncology appt. I was due a blood test/PICC line flush at 12.40, which was OK, with Onc appt at 1pm. When I got into the waiting room, there's a sign up saying clinic is running an hour late. Annoying, but, I imagine, like most of us, I'm having to learn to wait! Time has become a 'relative' construct since starting all of this!

And, it's Oncology. In a pandemic. People need to ask questions, which they need, and deserve, answers to so things over-run. It happens. So, at 2.30pm when I'm still waiting, I went to ask reception. Long story, but I ended up asking reception 3 times, and saw my Breast Nurse, all of whom said 'we'll get back to you' which they didn't. At 3pm, I was ushered into a side room, and eventually got seen at 3.15. My Oncologist did apologise, but I was so wound up, I really couldn't explain.

By this time, I'm really upset, annoyed, and to be honest, quite frightened. I suffer with anxiety anyway, and I think, in my head, this situation left me feeling no-one cared I was even there, and I'm so insignificant, they can't be bothered to even let me know what's going on. This doesn't inspire confidence, or trust, especially when this is (dramatically, I know) my life in their hands. 

I know it's not intentional. I know everyone's busy. And I will explain further to my Oncologist. Someone saying 'look, really sorry, it's going to be another half hour' or whatever, would have helped. I'd have been miffed, true, but at least I'd know.

Just wanted to know has anyone else felt like this? How have you dealt with it? I can, quite feasibly, see it happen again, so any ideas would be appreciated!

fionafayker
Member

Re: November 2020 Chemo Starters

Helen, I'm sorry that that you've not had treatments,  that sucks!

I have a central line in my chest, as j had bilateral surgery when I had my mastectomy. I have a community cancer nurse come to flush and dress it, but as I've had it in for 6 weeks, I don't need thd dressing, which is fab as it's been a pain having a bath and placing a plastic bag over the dressing to keep it dry. I had the dressing removed on Wednesday so I've been having showers,  it is so good to get my head wet, even though I've no hair as I've shaved it off! I feel so much cleaner!😂😂

I had my 3rd round yesterday,  feeling ok, but was really tired yesterday and now I'm ready for a snooze, dog is on my lap so ready to go!