HER2+ and need some buddies

@jeml never thought I’d be so excited to be able to clean :rofl: I’ve been feeling mostly ok, some sensation returning including a bit of phantom nipple sensation which is the weirdest thing! Starting to have a wobble about my PET scan next week to check the ‘spot’ on my spine. Just terrified they find mets everywhere :disappointed: makes me feel sick. Every little ache in my back and hips I’m convinced it’s something bad, hoping it’s just stiffness from being less active than before.

@salbert sorry to hear about your dad, hope he’s doing ok and you’re not too stressed.

@anb1 my oncologist did say that they can’t be too sure from scans alone, because for example my tumour was still pretty big after treatment but he explained a lot of it could be dead tissue and the cancer cells would be around the outside of it, so the size of the tumour doesn’t mean it’s a solid mass of cancer cells if that makes sense?

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@salbert thinking of you, sending all best wishes.
Went for my first chemo today, all started off well, cold capped, had phesgo injection not to bad, started the docetaxel infusion within minutes had bad reaction! Infusion stopped, anti reactive given followed by saline. Nurse led hub so they could do no more! Have to wait for hospital to get appointment to try again! Gutted! I remember reading someone else on here had reaction, can’t remember who? My arm is sore where picc line has been put in, anyone else had this? Nurse today said it is normal, only put in yesterday!:thinking: x

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@sooz thank you for replying. Yes I thought had seen where when they get it out it may not all be still live cancer. I hope you are doing ok I know you have to have pet scan and I have everything crossed you will have good news. My oncologist is not in the least reassuring just focused on bad bits never mentions the positives. Xx

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Possibly was me who had a reaction.
I’m sorry you had one too.
On a positive side you said it happened quickly, that will likely mean they’ll switch you to a much better one quicker (they tried me on it again AFTER I had the reaction and I’ll never understand why, my reaction was about 30-45 mins in so maybe because it wasn’t immediate). They put me on Nab-paclitaxel instead after a second (milder, cos I caught it quicker) reaction and it was so much better (side effects and I had a great response). Hopefully you’ll have a similar experience and they’ll find you a much more tolerable med.

I wasn’t allowed to have my first treatments on a nurse only unit, they made me have it at my nearest cancer hospital in case of reactions (when I had my reaction probably a dozen nurses and doctors ran over to help and I was told if it had happened at a nurse led Macmillan unit I’d have been sent to A&E as they wouldn’t have been able to do anything). I’m ALWAYS surprised at how different each trust organises these things. I decided after that to have ALL treatment at the same hospital after that, even when offered stuff closer to home (nurse led). I like the staff a lot at the closer Macmillan unit but I’m not going there for medication (blood tests only).

I hope you’re feeling better since the reaction (I know I was extremely shaken up and exhausted after mine) and are able to take it easy while you recover from it.

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Hi @sassy3

I gave a Picc line and it was uncomfortable for a few days and then just irritated. The nurse told me to take antihistamine for a few days, one a day, and now it is better. I have had it 2 weeks or so and can’t feel it at all.

You will be glad you have it I think, as long as the soreness dies down, although I cannot lie, I am looking forward to the day when I can have a shower or bath without my waterproof sleeve!

Take care xx

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Literally fell asleep for a while at home! Just waiting again for appointment! I was told i would have my first appointment at hospital too but they changed it on my scedule!

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Yes, i think its better than canula, saw a few people at unit this morning having them done!

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Thanks! That’s no good having a negative oncologist, my oncologist is super positive and keeps telling me I need to be too :face_with_peeking_eye:

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@sooz no it’s really not good if they can’t be positive then how can we? It’s such a worry xx

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Omg i had the phantom nipple feeling! I kept thinking i had a itchy nipple.
Yes i can imagine, hoping its nothing, we have lumps on the inside not just out too though don’t forget.xx

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Hi @sassy3 I had a pretty mean reaction to docetaxel too - only managed 8mls!
I got switched to abraxane (nab-paclitaxel) and my body is much more accepting of that!
My PICC line was a bit sore for a good couple of weeks after insertion, it can take a little while to settle down
Hope you’re feeling okay after your reaction

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@jjjjane97 Thanks for that! They reckon i managed 10 - 12mls! Cheers for reassurance about picc line :wink:

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@sassy3 I know others have said it but I’ll say it too (so you know there’s even more of us) - my PICC line was a bit uncomfy for the first couple of weeks. Not really bad, just a bit uncomfy. The nurse pointed out that I should expect that as I would be a bit bruised and my body would also be getting used to having a PICC.
I also ended up having a bit of gauze between my skin and the PICC when it was taped down as my skin is a bit sensitive. The nurses got my PICC taping and sleeve down to a fine art and all was fine. So worth getting them to check if there is a more comfortable arrangement.

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They have put a little pad under mine today to see if that helps, thanks for responding

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Just catching up with the posts. Hope some of the problems some are having with adverse reactions etc get sorted. @norts hope things went well for your father in law and @salbert that your Dad is feeling better and all of you with GCSE stressed youngsters are getting through. So many challenges to contend with. My dog got booked in finally by the vet for surgery on her leg joint on 30th, that’ll be a slow rehab and very bored dog, we’ll muddle through somehow and at least it’s getting action. Thinking of everyone, good wishes. Hope the weekend is peaceful and as problem free as possible.

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Thank you.

I have the same as you. I had my 4th chemo and targeted therapy injection last week. I’m having 6 in total with an MRI after each 3 to check the size of the mass. After the 3rd my lump has shrunk from 41mm to 28mm. So going in the right direction :grin:. I’m having surgery last with possible bit of radiation. Stay strong and take one day at a time. We will beat this!

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We will !

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Hello, you lovely lot

Thank you so much for all your supportive, kind messages regarding my Dad. The old bugger pulled through yet again and my Mum says she thinks he is indestructible. He has been sent home but it’s been a stressful few days. GCSEs are under way so now we just have to pray!

@angie007 - I’m so sorry that what should have been a good experience that would give you confidence was actually a distressing one. I bought wigs from the MacMillan centre, from online shops and also from a wig bank and they all got more wear than the one I had fitted and which cost the earth!! I particularly loved my Hat with Hair. Don’t give up. Have a look at cancerhaircare.co.uk for loads of great info.

@norts Goodness me! We really do have parallel lives right now. I totally agree that we are at that age where we are stuck smack bang in the middle of ageing parents and teenagers and it’s non-stop. I tell my parents it’s the price I pay for getting to have them live to ripe old ages and that they cared for me for all those years so now it’s payback time. My Mum hates to have to ask for help but she’s 90 in October so has had to accept some limitations. Also sending you every good wish for your father-in-law’s op and recovery (no…wouldn’t want to be that surgeon either! :smile:) and for your kids exams.

@arty1 Dad has an absolute catalogue of health problems but the congestive heart failure is a new one. He is in his late 80s and he has truly lived. He has wrung every drop out of life so for that, I’m happy. He certainly never has to look back and feel like he missed out!

@anb1 - It’s a fact that the way in which your consultant and oncologist convey information has a massive bearing on how you feel about it. The difference between my first consultant (who I called Dr Doom) and the ray of sunshine that was my second consultant was huge. Polar opposites, in fact. I went from feeling desolate to full of hope just by switching consultants and hospitals. It’s why I feel so strongly about this forum. I honestly feel that you still have lots to be optimistic about and that if he had been a bit more positive then you would feel differently. Surgery will remove anything that is left and your lymph nodes could still be clear. When we see these people, we are so vulnerable and we look to them for reassurance. When this doesn’t come it can leave us fearful and in despair. Do you have long to wait until surgery? Even if there was bc in your lymph nodes, there is still lots they can do. Many of us had it in the lymph nodes, me included. Here I am out the other side of treatment and looking forward to my reconstruction on 23rd May. This time will pass, even though it’s so horrible. The sun will shine again for you. Sending love.

@sooz1 - PET scans are scary, it’s a fact. The word scanxiety sums it up perfectly. Hang in there and keep us posted. I’m so glad you are able to clean again. Little milestones do bring joy in ways we never expected.

@sassy3 - Sorry you’ve had a bad reaction to docetaxel. Delays are frustrating and disappointing when we just want to get on with it all. I hope that they can switch you to another drug that you can tolerate better.

@sez I am also surprised (but less so these days having been on this forum for a year and a half) at how differently each trust operates. It’s definitely something of a lottery.

Oh @hoggie - That waterproof sleeve! Getting shot of that thing was indeed lovely.

I had my pre-op phone consultation yesterday and have my pre-procedure investigations on Wednesday of next week ahead of my reconstruction which is 2 weeks today. I’m so excited!! This is the good bit at the end of this sh*t show, right? I am getting a permanent soft implant on the side of my mastectomy, my saggy real left one is getting a lift and the best bit is them taking fat from my hips to pad out the bits that need padding out. Also…and this might sound a bit sad, but I’m looking forward to a couple of days break in hospital. A bed and a book…lovely!

Have a good weekend all,

Salbert
xx

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Hi all, new schedule set up, all future chemo to be hospital based, they are trying same treatment but slower infusion on Wednesday, bit worried as the reaction was scary! Not sure how the phesgo injection will tie in now as i had that successfully completed, watch this space :confused:

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