Good luck tomorrow @jeml - make sure you take things easy xx
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@jeml - Good luck for tomorrow , we will all be thinking of you xx
I said goodbye to my left breast the night before surgery … but at the same time I felt this desperation for if to be gone . It was full of cancer and would potentially kill me . I joked that it had always been my favourite boob but not now it had tried to polish me off !
Three months in …I feel a sadness it had to be done … but it gave me decades of loyal service and fed five babies and I’m ever grateful for that x
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@kartoffel @marionse25 hi ladies, I’ve not been on here for a while and so I’m not at all up to date with how you’re both doing with the Kadcyla?
And @salbert how are you doing?
And any one else I’ve missed, sorry my memory is hopeless now with the hormone meds!
I had a pause of 8 weeks since my second Kadcyla in October, for radiotherapy and a lung problem. But I’m starting again this Friday and still nervous, even after 2 rounds of this one already I find it quite scary to be going back on the chemo ward. My bloods are not great (even after an 8 week delay!) but they are good enough to go ahead thank god. I’m a bit miffed to be having it just before Christmas but hopefully I’ll be not too bad affected (the previous ones have been alright - not awful)
Anyway just wanted to pop in and say hello! And let people know I was alive and well just not checking this as often. Sending best wishes to everyone x
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@jeml I’ve been thinking of you today and hope everything has gone ok xx
@isthisreal Gidh that’s a long break , but obviously very much required . It’s really important you are well enough for these treatments xx It must have felt like a culture shock being back in the chemo unit .
@salbert Yes I’m glad my friend spoke to me as I was really anxious and upset … she kept reminding me that I need to be well and that superseded anything else … I’m back in tomorrow … feeling a lot better than I did. The dose has been reduced too. Hope(as I was promised a dose reduction ) It think my poor body just found chemo and herceptin round one … too much
… the good news is … iron is on the up
… woop de doo !!!
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My blood test on Monday showed an improvement so have another blood test on Monday and if my infection markers are still good then the Hickman line can be removed.
Put X-mas tree up today. Just writing some cards. Not bought many presents yet so may end up leaving that until after X-mas unless I do some more online. I have a CT booked for 30th Jan so will have time to get my strength back. Glad your iron is better arty.
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Hi @isthisreal
Your message is very timely! I have only had 2 kadcyla so same as you I stopped about 8 weeks ago. I had to pause as I litteraly woke up blind a week or so after the 2nd infusion. I have had a lot of tests done, and I spent all afternoon at Moorfields today to get the results. I have optic neuritis which is basically eye neuropathy. The cause is uncertain. I have been tested for MS and various things and all came back negative. It is not due to cancer spread to my eyes either which was a possibility too. Relieved it is not! Kadcyla is likely the cause but they can’t say for sure. I have more tests in January but that won’t solve the issue. It will tell the extent of the damage.
I was hoping all my SE from Kadcyla would have gone by now but nope. Still have bad insomnia, body aches, constant lower back and hip bone pain etc.
I am seeing my onco on Monday and will need to decide what I am doing. I have not started my AI yet and when I do, it could worsen my optic neuritis.
I am happy to hear your issues have been sorted and you can continue Kadcyla. If I were you, I would ask to delay after Christmas. One week won’t make a difference and you will be able to enjoy time with your loved ones.
@kartoffel I hope all is well with you and tgat Kadcyla continues to be kind to you
@salbert I hope you are doing well too
I haven’t checked the forum for a while, partly because I could not see but also because I was feeling extremely low. My vision is more or less back which is good. And today was good news too. My eye loss could have been the sign of BC spread to my eyes… MRIs are not 100% reliable but the neurologist at Moorfields today was confident there was no sign of disease.
I will post an update on Monday when I know what the next step is.
Have a relaxing evening All
Marion xx
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I was thinking about you Kadcyla ladies, @isthisreal and @kartoffel and worried we hadn’t heard from you for a while, especially you @marionse25 , particularly about your sight, thank goodness that’s improving, tho sorry about your continuing other symptoms. That must have been so scary, i can’t imagine. It sounds like you have been thoroughly investigated and thankfully haven’t found anything nasty. I hope you have a satisfactory appointment on Monday. Let us know how you get on. @isthisreal I hope your radiotherapy went ok. Good luck with you next treatment.
@arty1 and @Linda_Corinne , i’m pleased your bloods are on the up, that’s good news. Christmas will happen whether we are ready or not, you can only do what you can do, i’m sure everyone will understand. I have a long list of jobs to do before famly arrive, but i’m hoping that if i can get a lot of prep done beforehand actual christmas day will be quite chilled (maybe not with a 3 year old in the house ). i’m also making time in the next few days to meet up with friends, particularly one friend who has been so supportive and helpful this year, so i’m taking her for lunch tomorrow. I have really appreciated my lovely friends this year, so i dont want to spend all my time cooking and cleaning.
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@marionse25 I’ve been thinking about you , I’m so glad to hear your eyesight is so much better and that tests have ruled out it being BC related … that must be a relief in lots of ways .
I can’t imagine how frightening it must have been to wake up and find you couldn’t see . It’s no surprise you’ve been so low 
xx
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Thank you ladies! As usual your lovely comments uplift me!
Surgery went well i was not waiting too long as i was third on the list. Was a bit scared when i went down and had a little cry. All the team was lovely and was reassuring me and holding my hand etc. Its a big decision to have both off but like we have said it does not define me as a person or a women. I was talking about my little girl watching the ceiling it had butterflies in this glass with flowers then i was out of it before i know it. Woke up in recovery with a nurse sat next me to saying my name…i asked her if she was a dream 
she laughed at me, i think thats only silly thing i said. Surgeon came to see me and said it went well… and could not see anything as they went in 
he said my scan showed good results too so expecting not to see anything and having clear margins. Im so happy! Got two drains in and woke up just before 4am in pain my right side. But got comfy in bed and popped some.more tabs. Its sore but managable 
thank you so much everyone. I love this group. Women supporting women!
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@jeml what a wonderful post to wake up to. Congratulations on getting your surgery done and you will be home before you know it. I hope you stay pain free. Be kind to yourself and let everyone else look after you. Sending you lots of love and healing strength xx
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Aw thank you so much! Woken up to loads of lovely messages i been at it over a hour replying to them all.
All nurses etc thinks i made the best decision due to my age! And like i said i can get them back if i really want to. Im still in bed all comfy. Pain is coming through now though but its doable x
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Happy to hear your surgery went well & hopefully you’ll soon be up and about. 
Good to hear from you both @isthisreal and @marionse25 I’ve been thinking of you both & hoping you were doing better than last time we spoke.
Glad your vision is getting better @marionse25, I know there’s been a few people that have had vision problems with Kadcyla (although nothing as bad as you experienced) so it’s very likely that was the cause of all your troubles. Fingers crossed the rest of the side effects will go away soon.
Have your lungs healed up now @isthisreal ? I told my nurses about what happened to you with the port and they were all horrified and said you should definitely make a complaint to PALS about your treatment. Good luck with your third treatment, hopefully it treats you kinder than the first two and you’re able to enjoy your Christmas.
Not too much to report from me, I’m due for my 5th round of Kadcyla just after Christmas - only delay I’ve had so far is because the treatment centre is closed over Christmas so my next round will be on the Monday after instead of Boxing Day. I’m out in Tenby at the moment and it’s a bit bittersweet to be here since the last time I was here, I was doing the Ironman and now I just about managed a 5k run around town this morning. I did manage to pull out a PB on the finishing straight though 
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@jeml Fantastic News , so glad to hear it all went well , now you can recover and enjoy Christmas xx
I’m heading off to my delayed chemo and have had a full blown panic attack about my herceptin jab … As I reacted last time I’m worried sick I’ll be in for a much worse reaction this time and the trouble is … with it being a jab . They can’t stop it … it’s already in … uggh … such a worry 
Got on the scales and to my horror I’ve put 7 pounds on in 4 weeks !!! I was already fat … 
Hi…yeah…its docetaxel…sorry my mistake…for me its 3 weekly…and i have 2 more to go…next one is 26th december…but i find it more tolerable then EC. May i know how is the radiation experiemce for you ladies…will there be any bad side effects…and for a lumpectomy how long will the radiation be…how about phesgo side effects…is it tolerable…sorry i’m asking too much…i’m anxious thinking about it.
Hope everyone is having an enjoyable holiday time… @jeml congratulatuons on finishing the surgery…now you can recover while celebrating christmas…
Evening ladies, firstly I owe you all a thanks for supporting me since I found out I had BC in October; stage 2, grade 3 her +ve in left breast. Your experiences have not only guided me but also given me a feeling that I’m not alone.
Initial mri suggested a 2.cm invasive and 6.2cm DCIS. I am 42 yrs.
I’m sure you can understand when I say my world has been turned upside down.
I have had 3x chemo and have three more to go. I was changed to abraxane treatment due to reaction on the second one to docetaxol. I am also on carboplatine and phesgo injections.
Currently a week into recovering from third infusion and digging deep that there is a light at the end of this and listening to your experiences I know that there is x
X
I had a few Phesgo injections before I switched to the Kadcyla and the only real SE was just some irritation where they injected it.
I didn’t have any SE from radiotherapy aside from tiredness and a bit of redness on the boob. I used Flamigel multiple times a day (if you can get that where you are) which I think helped with keeping the redness and irritation at bay.
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Hello, wonderful women (although I often feel that I should say hello to any men that may drop by as I know it can happen to you too and if it does and you should read this, then please say hello and bask in the attention that will be lavished upon you by some outstandingly lovely ladies).
So many posts here from so many people that it is really good to hear from! It really doesn’t matter how long you leave it, always lovely to hear from folks as and when they get a chance to drop by.
First of all, it’s so good to get an update from the Kadcyla girls. @isthisreal HELLO and I’m so glad you have instigated this because I was also wondering how you were all doing. It’s a tough road that you’re all on and I’m pleased you have each other to compare notes. You sound way better than you did, even though you are having a hard time of it. You are steadily getting through that treatment now. Keep going!
@marionse25 - Thanks for giving us all an update. Losing your sight is just horrendous and I haven’t been able to stop thinking about it. Thank heavens it is not due to cancer spread. I was sure the reason we had not heard from you was because of this so it’s a relief to hear that your vision is returning. Please do let us know after Monday.
@arty1 Good news that your iron is on the way up. Praying this round is better than the last for you. And STOP IT! You are NOT fat. You are stressed! Cake is your friend right now. It was certainly mine.
@Linda_Corinne Good on you getting that tree up and your cards done. I feel that every time we do something like that, it’s one in the eye for breast cancer. Sod you bc, you shall not take all our fun away!! Sounds like you are on the up. Marvellous news.
@pennyp I am off to the pub shortly to meet with a friend who has been particularly supportive this year (she’s had bc too so has been a bit of a cheerleader to me) and I feel the same as you in that regard. Last Christmas was totally ruined by bc so this Christmas I want to spend time with good friends and family and really enjoy myself. I want to make time for me so I AM buying a bottle of wine when I get down to The Bell and if I have a sore head at my desk in the morning, then so be it. I’ll just have to have another drink tomorrow night at The Hare and Hounds Christmas party to get over it. I vowed I would enjoy this Christmas and bc is NOT taking this one away from me!! However, if you think you are going to get a chilled Christmas Day with a 3 year old in the house, then you are probably barking up the wrong tree. 
@jeml It’s great to hear from you quite so soon after your op. I’m sure I speak for many when I say that we are all so happy to hear that you are happy. You are bang on when you say that this is women supporting women. It’s why I love this group too. I agree, a wonderful post to wake up to @galdiolus. You will be able to give so much hope to other younger women facing a double mastectomy. I love your spirit.
@kartoffel What can I say? If you are doing a 5k run and a PB on Kadcyla and after every other bit of poison you’ve had rinsed through your body, then bc doesn’t stand a flipping chance! You are a machine! I don’t think I’ve ever been able to run 5k. I did try to do The Running Man dance move to Hear the Drummer Get Wicked on Saturday just gone and I was whacked out after 30 seconds. Tops. Think I’d better get exercising. 
@farra I didn’t suffer at all during radiotherapy. I kept expecting the tiredness to kick in at week 3 but it didn’t although it helped massively that I was working from home, I’m sure. I used Flamigel RT and my skin was in excellent condition afterwards so I recommend that if you can get it in Malaysia. I don’t think I get Phesgo side effects as such, but I have been put on a heart drug called Candesartan to protect it until I finish the Phesgo in April. My ejection fraction had dropped from 63% to 52%. Now it is back up to 62% so it’s working. I’m still able to walk and run around a studio with my kids for Musical Theatre and Drama classes. I’d like to say I’m perfectly fit but my above post regarding dancing to Hear the Drummer Get Wicked would suggest I’m not as fit as I’d like to think. 
@purple_rain Great you’ve dropped by! We can all empathise entirely with that feeling of having your world turned upside down. You are not alone, in fact there are an army of us and that’s how I like to see us. A tough mudder army of kickass girls fighting our way through this with our arms around each other.
And on that note, my friend has just messaged to say she will be at The Bell at 5:45pm so I’m going to whack on some lippy and get my backside down there. It’s wine o’clock. (In moderation, of course! 
)
Salbert
xx
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Hi @salbert , haha, fortunately the 3 year old and her parents, although staying with us, are having actual xmas dinner with the other Nanny. Ive still got to cook lots of food for leftovers on Boxing Day (the best bit).
@farra i didn’t have any particular tiredness either, but i only had 5 days of radio. Everyone said to expect it a week or so after radio had finished, but it never happened. I did have a little redness and some itchy spots and used lots of Aveeno moisturiser and Flamigel RT on the spots (you can buy this on Amazon if the hospital dont prescribe it). I don’t get specific side effects from Phesgo except for occasional bouts of diarrhoea, but this could still be the residual effect from Paclitaxol which was a nightmare.
@purple_rain hi, i’m sorry you are feeling a bit low, i know i had a bit of a dip about halfway, it seemed like a long way til the end, but before i knew it i was counting down to finish line. I hope you can enjoy christmas as best you can - watch lots of uplifting xmas films and cartoons on the tele. You will get there. Well done for managing so far.
I’m hoping to be dancing around the lounge on christmas day watching Strictly special.
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Excellent news @jeml Take time to heal and be kind to yourself.
@arty1 they will be checking your weight in clinic as Taxanes can add weight in the form of edema but it is reversible. I put weight on but not enough for them to be concerned.
@farra radiotherapy was 5 days of high dose and was ok for the first 3 days then I had a two day break over the weekend and the last 2 days I was starting to feel fatigued. I had to do breath hold for both sides and that was a struggle with fatigue. They warned me that after 2 weeks the fatigue would kick in and it did become more evident, needing more rest and sleep. I moisturised every day with Radiderm R1 and R2 which I won on Instagram from Dr Liz O’Riordan and I didn’t have any red or pinkness. I was advised to use something I was used to using to prevent allergy. I have also used bio oil (ren gen oil (cheaper version)) on the scars.
I had Herceptin and found I was tired for a couple of days afterwards and a bit of an upset stomach. It’s definitely better than having chemo as well. Others have very little side effects. As usual everyone is different and their side effects are as well. My heart ejection fraction was monitored and is did dip quite a bit from 68% to 57% but they were happy as the normal range for women is 70-55.
@kartoffel Tenby is so lovely (maybe I’m biased living in South Wales!)
@marionse25 you have been through the mill but I’m so pleased that your eyesight has returned.
@isthisreal you have also been having a hard time. Be thinking of you tomorrow.
@Linda_Corinne so pleased you are feeling better and getting in the Christmas spirit🎄
@purple_rain it’s so lovely that you have posted on our thread and that the posts have helped you through your journey so far. Wishing all the best for you ongoing chemotherapy.
Had a busy few days. Helped feed over a 100 people at our local foodbank. I was knackered and I was only packing the Christmas treats. We are so lucky to have a very generous community. I’ve also been to the Frankfurt Christmas market in Birmingham, it’s was lovely to be there and see how the city has changed. I’m from the Midlands originally and worked in Birmingham city centre when I was 19 for a year. Managed to see the in-laws and my aunt who recently lost her husband to cancer.
Wishing everyone a wonderful Christmas, however you spend it. 
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