You can get it (kadcyla) through a cannula, port or picc I believe. Highly recommend the latter two if you’re going to be on meds a while and either found chemo rough or just want procedures done as quick as possible and plan to return to work. They speed things up significantly and also you don’t get regular bruising and potential cannula ache (I bruise like a peach and my veins are shot now).
That’s of course if you can cope with the procedure of installing either of them, which is a bit dramatic and requires going on local anesthetic as they’re surgical.
With phesgo it always left me with a massive sore patch for about a week on my thigh (not including the incorrectly administered first one I had which caused nerve damage and I’m still suffering with). Normal people don’t have that so it’s not a big deal, I think I just have PTSD (mostly from a test afterwards that hurt even more and now I don’t want anyone touching my thigh).
If after your surgery there was no residual cancer I believe they keep you on phesgo for 18 cycles and you can often have a nurse come to you to do it, one of the perks. Kadcyla is 14 cycles but it has to be given in the hospital (the very first you have over an hour and that includes you being observed afterwards in case of reaction, after that it’s barely 45 mins), for if there was any crap still active after it was removed in surgery.
Both are much nicer than the full toxic cocktails many of us suffer with for months before we have surgery.
100% agree with you @kartoffel. Ive just had 3 x EC, 1 x Doxi, 9 x Paxi and 4 x Phesgo so far. Seen surgeon last week and she suggested that I might need more chemo after the operation which wasnt mentioned. I am more than happy to have everything thrown at me but like you would prefer worst caes scenario as I have thing I want to plan but just cant. Have seen Oncologist the day before each of my chemos and she has never mentioned more chemo post-operation.
Hello @hedgehog (Great name!)
Welcome. You have the same diagnosis as I had. As @naughty_boob said, it’s worth reading this thread as there is more chat around Phesgo than you can shake a stick at. I’m sorry to hear that you are the main breadwinner in your family as that puts more pressure on you. I remember thinking that I simply didn’t have time for breast cancer when I got the news, and I expect you feel the same. Like others have said, by far the worst bit for me was the EC chemo. I then got 12 x weekly Paclitaxel which wasn’t as bad. That said, I was able to work from home all the way through as I never felt so bad that I couldn’t manage. I did have to give up my drama and musical theatre teaching jobs for a couple of terms as being around so many children would have been asking for germs. My office job is in sales so I could just work from home between 9 and 3 every day and I managed. So it very much depends on what you do and how you feel but personally I would take the time off during initial chemo. Especially as your job is stressful. I found Phesgo a walk in the park in comparison; the only side effects being the galloping trots and a crusty nose. I didn’t need Kadcyla as there was no residual cancer found after my mastectomy although I did have 2 lymph nodes involved. Phesgo is not actually chemotherapy; it’s a targeted therapy wonder drug. They inject it into your thigh over a period of about 5 minutes. This drug has been a game changer for HER2+ bc. My hair fell out on EC but started to grow back on Paclitaxel and I didn’t lose any more during Phesgo alone. Anyway, I’m glad you’ve found us as we are all kindred spirits.
@gromit12 - I hope that the next 2 - 3 weeks fly by for you. I don’t need to tell you to distract yourself. I don’t expect there is any room in your diary to write and I’m intrigued to know what you will get up to next. One thing I do know is it’s unlikely to be average!
Good luck on returning to work @sez. Easy does it.
You poor thing @millie7, sounds like it really hit you hard. My oncologist said to me before chemo that the cancer could already be gone but they were going to give me everything to make doubly sure. So there is still lots they can do for you which hopefully won’t make you so desperately ill.
I only found out about Kadcyla on here so when I asked my team about it, their response was ‘Oh yes, it’s a slightly different treatment pathway if there is residual cancer’. I think they take it in their stride whereas to us, to be told you need more chemo after you think you’ve finished, is a real kick in the teeth. I think I would rather have the whole picture at the outset too. It does seem to be standard procedure not to warn us of this possibility.
@salbert distracting myself with a 50km in the Gower on Saturday
Hey @hedgehog. I had pretty much the same diagnosis and have just finished 14 rounds of chemo (CE, Doxi, Paci) last week. Operation is due on 13th August. As others have said it really depends on your work and the people you come in contact with. I have my own business and work in an office with 1 other person, so virtually isolated during that time. I was able to work in office or at home but more importantly rest as and when I needed to. The first 7-10 days after CE I needed afternoon naps so I would either work from home or go home mid-day. I was also supported by my team who wore masks if they needed to come into the office for any reason plus I was able to have a toilet just for my use as tummy can often play up unexpectedly. If you are able to take the full CE off I definitely would. The Paci although weekly didnt floor me as much, but we are all different. You need to be able to rest when needed and keep away from as many germs as you can and only you can judge that.
Phesgo hasnt been an issue apart from a troublesome tummy.
My head and body hair went on day 16 (2 days after my 2nd CE), eyebrows and eyelashes went when I had Doxi, but hair and body hair and started growing back when I started Paci. I have a full coverage at about 1cm long all over however eyebrows and eyelashes are still sparse.
I hope this has helped you but we are all so different and you treatmet will affect you differently to someone else.
Thank you everyone, such good advice. As you’ve said we’re all different but it helps so much to hear from others rather than feel like you’re figuring it all out on your own, while also still reeling from the diagnosis and handling the effects of chemo brain (which in my case is layered on top of perimenopause brain!). I’m so glad to have found this community.
I am finding Kadcyla fine too - no difference in feeling between that and Phesgo for me I had 7 phesgo before my Kadcyla so got a chance to see what the Phesgo was like on its own before getting switched over. Phesgo isn’t a chemo drug but is a combination of Herceptin/Pertuzumab and Kadcyla is a chemo drug with Herceptin and the Herceptin finds the HER2 cells and then releases the chemo drug into them to specifically target them. I’ve got a port for my Kadcyla due to having a lot of issues with my veins after my original chemo but it’s super handy and I forget it’s there most of the time!
@hedgehog good luck with your work negotiations, lots of good advice already. Keep it as flexible as you can as this ‘train’ is so unpredictable, go with your instincts and the type of person you are. As you can tell from a read of this thread we cope in different ways with balancing energy demands and the need for rest vs distraction. I know I err on the side of staying busy and having my brain doing stuff that just isn’t to do with cancer, I can also see that if you hit an energy brick wall it can be like burnout and very hard to restart. @gromit12 go girl…50k…you are amazing, inspiring…but be careful and look after yourself!
@gromit12 That’s the Gower Peninsula one? The 50k I’m doing in September is organised by the same people so I keep seeing chat about that one in our FB group…
@hedgehog & anyone else interested. I think SE wise the impact of Kadcyla vs Phesgo is much the same for me (I had 2 standalone phesgo before switching to kadcyla) but there’s more involved with the logistics for Kadcyla - had to get a port because I didn’t trust my veins to hold up, have to have blood tests before every round, infusion vs shot (5 minutes vs 30+), heart checks every 3 months vs less frequent for Phesgo.
@kartoffel yep Ultra Challenge - Gower is new for this year. Then 2 weeks later I’m doing the SW Coast 50 km again with Ultra Challenge!!!
Hi ladies who get me. Having a little panic for kadcyla 6 tomorrow as said would do first bone infusion treatment thingy too. Now got anxeity about taking myself to do something that will make me feel ill. Similar to first chemo 12 months ago… any reassurance on how you felt? ???
Totally agree. It would be much easier to take the Kadcyla news if you knew it was an option from the get go. It seems to be becoming a more common pathway
I’ve never heard of that. Will have to look it up as I don’t think anyone has mentioned it (hope it’s not a surprise coming up).
I read posts on an international Kadcyla Facebook page. As many complaints about the shock of extra chemo treatment as on this group. Several times mentioned that 50% of HER2 patients have residual cancer after chemo. Wish I’d been told that from beginning with ‘but we have Kadcyla for that’. One American oncologist said that they are doing trials to see if Kadcyla can be only treatment instead of old school chemo first, because Kadcyla so effective. Really hope this works out for future patients, what a development that would be.
I also had a port fitted for Kadcyla and would definitely recommend. I had my chemo through cannula which was doable but has left my veins quite scarred and was starting to get twitchy about it towards the end. They fitted my port under sedation so snoozed through the whole thing
Morning All,
I have been following this group since diagnosis in January but am more active on the chemo monthly starter thread.
I like so many others it would seem was not aware of the possibility of kadcyla up until a phonecall with my oncologist this week, At my initial oncology appointment I was told that I would be having 4 docetaxel along with phesgo,followed by 3 EC and then surgery,The phesgo would continue following surgery 14 every 3 weeks.
I completed my chemo in June and am due to have surgery in August,So having this information given me has been a lot to take in when I had got to grips with the first plan!
Especially when it was also mentioned that there is still a possibility that I would require radiotherapy after surgery as this is something I wanted to avoid and was a factor in me choosing to have a mastectomy!
I know they have to plan for all potential outcomes of results post pathology results and nothing is set in stone until these results are in,But I feel they should inform you of all potential treatment plans
@belle1 - It’s good to know how Kadcyla works. What a clever drug. It would be amazing if the research that @jayveebee talks about shows that it could be given instead of the old school chemo first.
@jayveebee - I was fine on the first day that I had the Zometa (zoledronic acid) bone infusion. I had it at the same time as my Phesgo and felt grotty the next day with flu-like symptoms. I was fine on the day itself. My oncologist said that it tended to be better on subsequent bone infusions and he was right. I got no side effects at all the second time around.
@gromit12 and @kartoffel - I continue to be in awe of anyone who can run 50k at all, let alone on Kadcyla!!
Hello and welcome to you @rainbowbrite10. Here’s hoping your surgery goes smoothly and that your pathology results are good.
We have an opportunity to go campervanning this weekend. I’ve just checked the weather forecast and yes, for the first time in weeks, rain is on the way.
Hello, lovely ladies, sorry I missed lot of your messages.
I had surgery yesterday, admitted at 7am and discharged at 8pm as I was in so much pain, as I am petite they cdnt give me big doses of pain killers but at the end they give up and administrated morphine and some to take home as well.
Still overwhelmed by all what happened and all the phone calls from nurses, luckily my sisters are here to support me while my husband is cheating on me
@hasnae87 I was just wondering how you were when your message popped up. I read your last sentence with horror…this is the husband who was giving you opinions on what breast reconstruction you should go for only a couple of weeks ago and now you find is cheating… barely know what to say …I hope your sisters can support and protect you but I can only imagine the hurt. You can vent, cry whatever here, we will listen.
Hi Hasnae87 pleased to hear you are home now and have your sisters with you to help you. I hope you not serious about your husband cheating on you?
I had my mastectomy last Thursday and am overwhelmed as well and have go back to surgery tomorrow as I have a haemotoma and a bleed inside so they are having to reopen and sort
Sending you lots of love xx