HER2+ and need some buddies

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983

Hi @kartoffel @marionse25

I think my experience seems to be closer to kartoffel’s. I am tired, dry mouth, food tastes a bit odd and feel generally rotten like I have a bad cold. But I’ve had a few severe headaches only for a minute or two each time, but they totally floor me when they come. I’ve immediately taken paracetamol and they’ve gone.
So far Kadcyla is much much better than when I was on ECT. I’m only on day 3 though and so not sure what’s round the corner…

Sorry to hear you’re having such a tough time with it marionse25. That sounds so horrible. I hope you get some good advice from your BCN and doctor when everyone is back in tomorrow on how to manage the side effects. I’d been told they could reduce the dose next time depending on how it goes (and there is no change in how effective it is) so hopefully they can do the same for you, as it doesn’t sound tolerable.

Thank you to those who gave me their Port insertion stories, it’s all very useful to get me mentally prepared for when I need one. I’m really quite nervous about it. I have a wicked colourful massive bruise on my hand and wrist from my cannula palaver, it almost looks like it’s painted on!

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So happy to hear from you @isthisreal

Relieved that you are doing OK on Kadcyla. I hope I will get some meds to help, and that infusion 2 will be better, cannulation included.

985

Hello All, I haven’t been on here for a while. Gosh you guys have been chatting while I’ve been away. It’s so good to read all the encouragement of one another.

Well loads has happened while I’ve been away. Like @naughty_boob I made it to the end of 18 doses of Phesgo. This is week 5 since the last one. I feel Ok, but my bowels certainly aren’t fully recovered yet. Anyone else any experience of how long it took to fully work Phesgo out of their system?

Also, @rrey sorry to say the neuropathy in my fingers and feet seems likely to be a permanent feature now. At least so says the specialist oncology nurse, given it’s nearly a year since I was winding down on docetaxel which is what seemed to set it off. It means I’m rubbish on the phone keypad and have some very funny sensations in my feet at night. Anyone else left with neuropathy issues? But mine never stopped me continuing with treatment.

Sadly a big reason I’ve been so absent has been my 88 year old mum’s health. She’s at the opposite end of the country to me (Leeds vs Worthing!) and was in end stage Parkinson’s disease. Last week she lost the battle and slipped peacefully away. The amazing thing is, as I read back there are several of us who’ve had to deal with bereavement as well as BC, so again this forum’s amazing in making me feel not alone. It’s a shame my treatment meant I didn’t see as much as I’d have liked to of mum in her final year.

So this week feels like the first time in ages I can do a full week at work with no reason or other reasons to be off. It won’t be long before I’m due another zoledronic acid infusion so it’s not all over by a long shot. I think my work colleagues think I’m slightly making it up because treatment and appointments go on and on :disappointed:.

As you can see from the time of posting, I can’t seem to sleep tonight. Thank you anyone who reads my ramblings.

Love to you all.

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986

Hello my buddies

Gosh, it has been busy. I’ve had a crazy weekend dealing with my parents health issues and appointments, walking best friend’s dogs while she recovers from her hip replacement and drama teaching, food shopping and trying to get time to be a mother and live my own life!! @pennyp I loved your phrase ‘the sandwich generation’. It’s so accurate.

@arty1 Well done on getting onto PALS. I am so relieved to hear the amazing news that your SNB was clear. Now you can get on with treatment. I know it’s daunting but as @naughty_boob says, it’s doable and she has a lot of parallels with you. I have not had any heart issues so far on Phesgo so I hope it will not affect yours, especially with your condition.

@norts WHAT HAVE YOU DONE?! I had already been told to watch MAFS by my friend but hearing it a second time has made me think I must find out what this is all about. Oh no…I couldn’t bring myself to go to bed last night until waaaay past my normal time. I can see this becoming a problem. :grimacing: However, I don’t think it flippant to advise good (if addictive) TV. Whilst I was feeling dreadful and awaiting scan results, a woman on here suggested Colin from Accounts to me and it was a godsend. Distraction is very useful and it’s a brilliant comedy series. I still haven’t remembered to tell my son about the naked body painting calendar but I will be in the car with him and one of his friends this evening en route to a local 6th form college open evening so this could be the perfect time. :smile: I’ll let you know.

@naughty_boob Totally agree with the recommendations for the only sites to trust with googling. BCN, MacMillan and Liz O’Riordan. The only one I would add is Cancer Research UK. Stay away from any others!!

Kadycla girls…what can I say. My heart goes out to you all. It does not sound like it is plain sailing at all. I’m so glad you have us here and that you can compare with each other as that is invaluable. I’m so sorry you all have to go through it after all that you’ve already endured.

@isthisreal - I had a port in my arm and thought it was fantastic. I realise I have a high pain threshold and that not everyone does, but I had it inserted under a local anaesthetic and couldn’t feel a thing. I never had any problems throughout chemo and would highly recommend it.

@marionse25 It’s just one thing after another for you. One of my big hugs coming over right now. I think I know your local hospital very well, having lived in the Croydon borough for many years. If it’s the hospital I think it is, then yes, it’s too large, too heaving and I’m afraid I’ve had bad experiences there. I’m not surprised you don’t want to brave their A&E.

@suedot Always lovely to hear from you and please accept my sincere condolences at the loss of your dear mum. My mother is also 88 and cares for my Dad who has had three strokes and it is a constant worry. For her to be so far away from you when you have been going through this BC journey must have been so hard. You also get one of my massive virtual hugs. I really feel so sad for you and I’m not surprised sleep is elusive. Be kind to yourself. Do you have lots of people around you who can look after you right now? This year has been unkind to you. Sending you love.

I hope this is a good week for everyone,

Salbert
xx

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Hi @suedot so nice to hear from you but I’m very sorry for your loss.

We’ve had 3 losses in the past couple of months, two uncles 88 and 92 and a great aunt who was like a mother to my mother in law was nearly 100. They all love in the Midlands so it’s a day trip to go to a funeral and need to organise care for the dog or take him with us.

Well done for finishing Phesgo. I think I was told it can take between 6-12 weeks for Herceptin to no longer affect my immune system.

I know what you mean about appointments on going thinking you’ve finished your active treatment. I’ve just had a blood test for Zolendronic acid/Zometa next week.

:smiling_face_with_three_hearts:

988

Hello everyone

Radiotherapy number 1 of 15 starts today. Bring it on!! :muscle:

Next stage underway.

Salbert
xx

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989

Good luck. I only had 5, but didn’t find it too bad. A couple of side effects that’s all.

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990

Hello Salbert,

Good luck with your 1st Radiotherapy session today.
Let us know how it all goes.

Big hug and lots love :heartpulse:

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991

Oh @marionse25 , they certainly don’t sound ideal to work for when you are sick :face_with_diagonal_mouth: .
How are you feeling now ?

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992

Good luck @salbert !
My father had radiotherapy and didn’t have any side effects x
Are you offering you SABR ?

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993

Hi all.
Sorry to hear you are struggling @marionse25 and hope things are improving now.
Good luck @salbert , let us know how it goes. Do you have a long journey to get to hospital?

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994

Great news @salbert another thing to tick of the list.

Moisturise, moisturise, moisturise. If it becomes red and sore please let your team know. Although I think you already have Flamigel which is given for redness.

:smiling_face_with_three_hearts:

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Hi @pennyp @naughty_boob @salbert @isthisreal @kartoffel and Everyone, sorry if can’t remember all names.

A lot going on in 2 days geez. Don’t know where to start but I am sending my love and positive vibes to all of you.

After my awful in bed weekend I developed a respiratory infection overnight, with a lot of coughing, temp and sore throat. I could not get a gp appointment yesterday and wanted to avoid my dreaded nearest hospital. @salbert it is exactly the one you are thinking about.

I booked a private gp and did a return trip to London bridge and got antibiotics. Had 38.3 temp at 3am, feeling quite unwell but managed to go through a busy day at work today. Feeling slightly better but very achy. Probably a mixture of kadcyla and viral. I have cancelled my pilates tonight so my cording is not happy!!!

I spoke to my BCN who thinks I will do better at my next infusion…

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@marionse25 so sorry to hear you have a temperature and hope that the antibiotics will work quickly. Well done getting a private GP appointment, I don’t blame you going near a hospital there are so many bugs about. Have you done a Covid test, you are entitled to free tests at a chemist/pharmacy due to your treatment and diagnosis.

Has your nurse asked you to contact them in 48 hours to see how you are doing? The reason I ask this is that you should notice you feel better by then, if not you need to be seen and maybe a change of antibiotics. From my limited knowledge of Kadcyla contains a chemotherapy drug and therefore your immune system is compromised. I’m sure you know more than I do about the drug.

https://breastcancernow.org/about-breast-cancer/treatment/targeted-biological-therapy/trastuzumab-emtansine-kadcyla/

I’m hoping you feel much better soon🥰

997

Hi @naughty_boob

Thank you! i did a covid test and it was negative. I didn’t know I could get some for free. Useful to know thank you.

My BCN asked me to call if I don’t get better in 48 hours. She could not recognise my voice. I am about to go to bed which is early for me as I don’t usually do until 11pm or so.

Good night x

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I’m in Wales and it’s the same here. I just told them I’d had chemo and radiotherapy 6 months previously and was on targeted treatment that can lower my immunity ( can reduce white blood cells). Eligibilty within a year of treatment. It isn’t advertised very widely, I know a lot of older people going to pharmacies are buying them nd not being to,d they can get them for free.

I went into Boots and a local independent pharmacy and got a free box from each. I was offered 2 boxes at the independent pharmacy.

:smiling_face_with_three_hearts:

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Sorry to hear yoi have an infection, perhaps thats why you felt so bad over the weekend. It might be worth testing again for Covid (especially if free) as the early tests are often negative. However hope the antibiotics do their job if a bacterial infection. You are a trooper by working today.

Talking of covid is everyone having flu and covid jabs? I’ve had my flu jab but not the covid one, a bit reluctant to have the mRNA jabs and not sure if i can find somewhere that has Novovax which is supposedly more up to date with less side effects. I’m still covid cautious tho, masking in busy public places.

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Hello everyone

Thanks for your supportive messages. The first radiotherapy went off ok but my mother rang on the way home to say my father had been carted off in an ambulance yet again so I got home, applied for a 6th form college for my son, cooked dinner, went to Dance Fitness, came home and was about to eat when my mother called to say they had let Dad out so could I come and pick them up. Luckily East Surrey Hospital is only a 20 minute drive away so off I went and then I came home, ate my dinner at 10pm and then @norts, do you know what I did? I’ll give you one guess. After watching two weddings and four honeymoons I reluctantly carted myself off to bed and now I’m sitting at my desk feeling distinctly under-energised today. Hardly surprising. In just over a week, I have attended hospital appointments for Mum, Dad, best friend, myself and Bella the dog! You gotta laugh.

@arty1 You so obviously have a medical background. I had to google SABR medical abbreviation to find out what that meant! :smile: Answer is that I haven’t a clue but I hope so!

@pennyp If the traffic is behaving it is 24 minutes door to door from me to Marsden. Not bad at all. I have my Covid and flu jab booked for a week on Saturday. I think I’ll just keep those going now.

@naughty_boob I am indeed slathering on the Flamigel!

@marionse25 Oh love, you poor thing. I wish you could get a proper break. I understand about continuing working because I have had to do the same as I would only get Statutory Sick Pay on my contract but it’s so awful when you are feeling ill. Do stay away from that hospital we are both familiar with. I just think it is too big to cope with the demand. Sending you love and strength to keep going.

Despite thinking I had done a comprehensive shopping list for the week and doing it all on Saturday, as usual it is Wednesday and I have a new shopping list as long as my arm. I’m going to get it done, have radiotherapy number 2, make a chilli and then I’m going to hit the sofa and binge watch more MAFS UK. Oh @norts what have you done?!! :rofl:

Salbert
XX

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1001

@salbert So sorry about that. I haven’t even taken my own advice and have only watched one episode so far.
Definitely keep up with the moisturising. I had 20 radiotherapy sessions and my skin has been really sensitive since surgery. I slathered on Aveeno 3 or 4 times a day. I even carried it in my bag to radiotherapy and put it on before I got dressed. I am now 4 weeks past the last radiotherapy session and the worst my skin got was a tiny bit pink. It definitely helped being diligent with moisturising although some of the side effects business does come down to luck. Hope it all goes ok for you too.
Sounds like you’ve have a tough time outside of treatment too. Hoping your dad is ok.

@pennyp I’ve got my flu jab booked for tomorrow on the bc nurse’s advice. Covid jab in 2 weeks. I was also in two minds about the covid jab. I’ve also got what seems like hundreds of other appointments for things I didn’t do while on chemo in the next 2 weeks - cervical smear, dentist, you name it I’ve got it. This will be a fun 2 weeks!!!

@marionse25 I hope by the time you are reading this, you are starting to feel better.

@naughty_boob Interesting what you said about being within a year of treatment. There was some confusion about this timescale for me a few weeks ago. Discussions still happening between departments at my local hospital as to whether after treatment means after chemo, after radio or continues until after immunotherapy.

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@salbert. You make me feel tired just reading sbout your hectic day. Its good that you dont have too far yo go for radio. Hope your Dad is ok. Ive been a bit lazy really and finding it hard to get going, ive got so used to not doing much. I did do some painting this afternoon (art not decorating) and hoping to do more of that. I do gp for a walk every day too, but i dont think i will be going back to zumba til after xmas.

I think i shall probably get covid jab at local pharmacy, just didnt want it at same time as flu jab. Also going to enquire abput shingles vax as i think we are eligible for that as well.

I think this is no. 1000 in our message thread! Yeay, what a great bunch we are.

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