@salbert good to hear the phesgo isn’t affecting you untowardly 
Good result but they shouldn’t have put you through all that stress.
@arty1 perseverance pays! Well done. So pleased your results have been discussed and your SNLB is clear. Hope it’ll goes ok tomorrow. That will help with the anxiety levels. Hopefully they will give you appointment for next week tomorrow when you’re in clinic.
I’m in the South, just across the Old Severn Bridge. If I remember rightly you’re in Swindon about an hour from me.
1 Like
Awful that I had to do it though @naughty_boob … not the stress I needed!
Ah you are south , I live in the Cotswolds , so half an hour the other side of Swindon (mid way between Cheltenham and Oxford ) Great Western is my hospital and in general I’ve found the care excellent . Made the mistake of googling herceptin side effects and risks this evening and now feeling very gloomy …
1 Like
@arty1 Nooooo. Don’t google the side effects. Watch Married at First Sight instead. I lived in terror of the side effects at every phase. The terror was far worse than the side effects.
I say this being a very anxious googler myself. But im learning the hard way that it doesn’t help.
@salbert Please describe your son’s reaction to the calendar. I’m laughing just thinking about it.
3 Likes
@norts I know I’ve been so good staying away from bloody google … arrgghhh . I somehow have missed falling down the MAFS rabbit hole … do I need to watch it. ?!! I feel like the only one not watching it. 
1 Like
Herceptin caused issues for me but not for everyone. I felt flu like for 4/5 days with upset tummy, every 3 weeks. This was manageable compared to chemo.
Again depending on you and the drug (s) they give you will depend on how you react. I had weekly Paclitaxel that was reduced due to my heart issues and allergies and the reduced twice more. I found reading some of the monthly chemo starters threads to get an idea of what to expect.
What I always say is, it’s not easy but it’s doable. I planned ahead a prepped lots of meals for the freezer. You won’t know how you react until you start and each infusion can be different. Chemo is cumulative so it becomes harder as the weeks/months go on.
I know we shouldn’t Google but if you look at reliable sources such as BCN,MacMillan, Dr Liz O’Riordan then at least you will be informed. I think knowledge is power, I found researching made the conversations with oncology easier as I understood more about what they were saying and why. We have to do what is right for us. Sometimes knowing what is going to happen can calm the anxiety, for others it can make it worse.
Cotswolds, very nice. We’ve had many lovely days out in Bourton in the Water and Moreton in the Marsh. We have family in Witney so when we visit we often stop off.
3 Likes
@marionse25 and @isthisreal good luck with your first Kadcylas today! Had my first one yesterday and so far, so non-eventful which is good. I’m tired (fell asleep on the sofa yesterday at 8pm) but who knows if that’s due to finishing radiotherapy 2 weeks ago, starting tamoxifen 2 months ago or the kadcyla. 
Compared to EC-T and cold capping, the actual practicalities on the day were a doddle even though they had to run the first infusion over 1 hour 30 to make sure I didn’t react. They said they’d drop it to 1 hour next time and if it’s still going well, all the rest will be 30 minutes. No premeds, no post infusion cooling… in and out in under 2 hours 30.
1 Like
Good morning @kartoffel
Lovely to hear from you and know that your first infusion went well. I was thinking of you yesterday and checking this trail.
My infusion is scheduled from 1:30pm. Quite anxious about the canula and side effects. I had a melt down on Wednesday and again yesterday thinking I can’t do it.
I am back to work on Monday so fingers crossed my side effects are ok.
I will post an update as soon as I can.
@isthisreal I hope it goes well for you too.
Have a relaxing weekend
Hugs
Marion xx
1 Like
@kartoffel @marionse25 i am sat waiting to go in for my first Kadcyla and just saw your messages. Thank you for reassuring me that yours went well @kartoffel it has calmed me slightly. I’m really pleased you’re feeling ok. I have Zoladex too today and I’ve had that before and it’s not the greatest injection.
Good luck for later @marionse25
1 Like
Hope all goes well @marionse25 @isthisreal with your infusions.
Pleased your infusion was ok @kartoffel
The forum is here for you all
@naughty_boob the breast nurse reassured me on the phone that my regime will be tailored to me and that in some cases they discontinue if heart is affected too much as quality of life is more important , it sounds like I’ll be well monitored fingers crossed .
I’d be pushing to stop it if it raises my BP as my aneurysm will enlarge with a raised bp and I’d like to keep it stable and avoid open heart surgery on it or it rupturing .
It is lovely round here , Bourton is gorgeous but sadly so over run with tourists you can’t get near it now which is a shame . I quite often pop to Witney to go shopping , it’s a nice little town to shop in
I feel like living here is wasted on me at the moment as my days off are usually to great western hospital 
2 Likes
Good point about the googling. My remark was a bit flippant. Definitely being informed from reputable sources helps. I think it can be difficult to find balance. And those who have limited side effects often don’t mention that so sometimes discussions can be a bit skewed.
@arty1 I have had 7 Phesgo injections. I have a bit of an iffy stomach about 7 days afterwards and my leg gets a big red patch which lasts for a few days but doesn’t hurt at all. As @naughty_boob says it’s been very doable so far. And I still feel well looked after by the bc nurses and through heart scans. I hope it all goes ok for you.
2 Likes
@norts - an iffy tummy etc is bearable I guess … and you’ve had no heart issues ? I’ve been researching but from reputable sites … I do want to stay informed .
I’ve had my results today , consultant gave breast nurse the go ahead to give me what they consider good news …
the operation was a success , clear margins all round so no worries about further cancer in the chest wall etc , nodes were clear . I had multi focal IDC hiding in an amongst lots of areas of DCIS , all pretty small but dotted around everywhere , I would never have got away with lumpectomy . She said essentially it’s still early as the DCIS had just started to become invasive .
I felt a bit flat though and just kicked myself that I didn’t go to my screening mammogram as it might have been picked up at the DCIS stage and I wouldn’t need more than the mastectomy .
It’s still ER/PR- and HER2 + so next step is chemo and herceptin . Oh and she said something about biophosphate infusions ?
I’m back on Tuesday to see the consultant and then an appointment with oncology will be arranged . I know I should be pleased they have removed the cancer but I just feel down that I’ve still got a long road ahead of me …
And need to celebrate the small wins I guess … hopefully the active cancer is now in the bin as it were!
2 Likes
Great news @arty1 . It is sometimes hard to reconcile that you are now cancer free when you have a year of treatment ahead of you. Take it as a positive and deal with the next stage when it happens.
My team were not so clear that I was deemed cancer free after my surgery. I think it would have made such a difference to my mindset. I didn’t really feel cancer free until my annual mammogram this July. You will meet some people having chemo first to shrink the tumour and re therefore not cancer free until it’s shrunk to nothing or their surgery.
Celebrate with cake, it’s calorie free for us!
2 Likes
Hi @marionse25 how did your first Kadcyla go? I know you were a bit nervous so I hope it went well.
I had a bit of a nightmare with the cannulation. I really wasn’t expecting it having had a few months break (for surgery) I thought my veins would be ok. The nurses were struggling to get a cannula in and then one of the attempts hit a nerve. The pain was incredible, and my body went into some sort of reaction and my heart rate and blood pressure dropped scarily low and it took 1-2 hours until I was stable again for them to retry the cannula.
Eventually they got it in and the rest was fairly routine, but I am now feeling really quite traumatised.
I hate that it wasn’t even the drug that caused the problem but getting the drug into me.
I really hope yours went much better!!
1 Like
@naughty_boob yes it certainly feels strange to be told I’m technically cancer free but I’m still going to be blasted with toxic chemicals for a year … arrgghhhh
Interestingly I’ve been researching and found that women having chemo and herceptin have showed a reduction in issues with EF if treated with beta blockers or ACE inhibitors at the same time
I celebrated with half a packet of chocolate biscuits
2 Likes
@isthisreal that sounds very traumatic , you poor thing … well done on staying and persevering because I may have run screaming from the hospital ! Although possibly not with a low blood pressure .
Remember having a similiar experience when having an iron infusion at 34 weeks pregnant , they could not get the cannula in to the point where I was in a terrible state , before eventually fetching an anaesthetist who got it in first time .
Note when I was nursing we always fetched an anaesthetist for troublesome veins … if they can’t get it in , no one can !
Glad the rest was fairly routine - make sure you drink lots of water before next time as dehydration doesn’t help , also putting the hand in warm water helps too x
2 Likes
Oh no 
That sounds awful @isthisreal. Great that there was no reaction to the drug, but I could understand that wouldn’t be an experience you would be keen to repeat. Are you thinking about getting a port? I’ve had both a PICC line and a port and so far, the port has been much better. Every single time I’ve had a cannula it’s been more painful than getting the port put in.
2 Likes
@arty1 @kartoffel thank you both. It’s something that my home friends just wouldn’t understand. I really do love these forums where we all have been through the mire and so just get it.
It really was a pretty horrible experience. I’d been hoping to get by without a port as I feel I’ve had so many unpleasant procedures and I can’t bear the thought of more. But after today I’m really not sure. Thinking about it I could’ve been more hydrated. They did all the hot water and heated pads etc. probably just unlucky. I’ll certainly be asking for the nurse who succeeded eventually straight away next time.
1 Like