@anb1 Let us know what your oncologist says as it’s always good to share notes in case someone else experiences something similar down the line. Best of luck and I hope you can find some distraction and peace in the meantime.
@naughty_boob Fantastic info as always. I wish I had your talent for that.
I am at Royal Marsden waiting to go in and see Kieran Power to book my final reconstruction and lift of the remaining saggy old boob!! I can barely wait. Then it’s my penultimate Phesgo. The sun is shining and my spirits are high. To all those at the beginning of the journey… you will get there.
First time posting in this group.
Was HER2 + but negative the others.
Was on phesgo, carboplatin/docetaxel (switched to carboplatin/Nab-paclitaxel after three cycles) for x6 cycles. Had x2 phesgo cycles around lumpectomy. There was a 2mm bit of live cancer in what they removed so I’m to start kadcyla soon (14 cycles). Bit worried about potential hair loss. I’d read it isn’t likely to cause it but my oncologist has since said it would cause hair thinning or loss. I know everyone is obviously different but has anyone else noticed a change in hair? I was more upset about temporarily losing my eyebrows/lashes and hair than half my boob.
Welcome @sez - There are a few ladies on here receiving kadcyla all with varying experiences- I’m on Herceptin having just finished my chemotherapy so don’t have any knowledge of kadcyla side effects , but everyone is different in terms of how they react .
Hopefully the kadcyla ladies will be along soon to share their experiences x
Hi, welcome to the group:smiling_face: my hair came in extra thick after ECT and is still growing thick and fast. I have hardly any shedding (like I was pre chemo) and am having to get it cut every 3 weeks to keep it tidy as it’s still growing so fast I get the back buzzed and am growing a longer pixie cut on top to style it more so I really notice the growth! I’ve had 6 Kadcylas and am also on tamoxifen. Just got my hair cut this morning and my hairdresser was commenting on just how thick it is! Here is a photo of the top of my head (lol)
You angel, obviously won’t know how I’ll react but knowing it’s not a given that hair loss comes with it will hopefully relax me a bit.
Much appreciated, thank you.
Hello @sez - I’m truly glad that @belle1 has answered you so quickly because that head of hair is nothing short of tremendous! How heartening. Today at Marsden I asked the nurse about hair regrowth and she said that in her 20 years of experience, hair tends to grow back better than it was after chemo, thicker and healthier. Probably because it is brand new hair. She couldn’t comment on whether the cold cap helps or not with regrowth and the quality. However, if that’s Belle1’s hair on Kadcyla then that’s got to be good news. Good luck with it.
And on that note, welcome @marymop … What an absolutely perfect name when one considers the subject matter in hand!
I got my results and I have 4.5mm of live residual cancer that was removed. Good news is nothing in 5 lymph nodes that were removed (4 nodes were to get clear margins). So am seeing my onc tomorrow but he doesn’t want to give me more chemo unless my results were bad. The MDT have also said I may be better staying on Phesgo due to getting Sepsis. I am also seeing another onc on Teams as he had an input on my op so will have 2 opinions on the next step. Am disappointed as the CT and ultrasound showed nothing!
Hi @Linda_Corinne i so had the same for 6mm residual cells. It really threw me, as in my head the chemo had got it all. All i could hear was that they’d found some after i thought i was clear. I had to keep telling myself but its gone now, I’m clear and thats the point of the op to be sure. Have they discussed Kadcyla immunotherapy you?
Will discuss in the next few days as well as radiotherapy. Nothing was seen on CT and ultrasound so seems odd that 4.5mm was found. Are you on Kadcyla? Am disappointed.
They had said that the scans can only see mass and thats why they do the op to check at cellular level but it still messed with my head! I started Kadcyla today. It was a shock to go from popping in for a phesgo injection every 3 weeks to being back in the unit on a drip for 90 minutes every 3 weeks. I’ve squared it with myself as being given an amazing opportunity to have an expensive treatment that improves no return by 40%. And now I’m off to bed with my weird hangover feeling. Not a drop of alcohol either!
@Linda_Corinne
I can understand you feeling disappointed
4.5 mm would be unlikely to show on scans as it’s a very small amount - I was told I only had a 1mm invasive after biopsy and the rest was all DCIS but when I had my mastectomy they found five seperate invasives with the biggest being 5 mm , I was really shocked by that but at least they had taken it away x
Hi @Linda_Corinne - So it’s a mix of good news and disappointing news. Like @jayveebee says, if Kadcyla improves the no return stats by 40% then it’s got to be worth it, although I totally sympathise with everyone who gets the news that there is residual cancer and that there is more chemo on the cards. Mostly people seem to say it’s easier than EC and taxane drugs. I join with @sms in sending you both lots of positive healing vibes and a return to rude health.
I was told yesterday that I will get my reconstruction in May or June. The tissue expander will be replaced with a soft saline implant and he explained how they will lift the other side so they are both nice and perky! He said he will also put some fat around the sides of the implant to make it look more natural. Where does the fat come from, I asked. Your hips, he replied. My euphoria was undisguisable! That stubborn hip fat will finally be put to good use. Well done me for eating all those cakes and spuds.
Hello everyone, I’ve been reading posts for the last couple of months and feel very lucky to have found this HER2 forum. I’m on my 4th round of Paclitaxel and Just had my second Phesgo, 20mm lump and 1lymph node up to now? Lovely meeting you all.
@belle1 your hair is fab. I cold capped so didn’t loose too much but I’m finding the new hair rather flyaway and frizzy. Possibly due to Letrozole as it can dry the hair as well as everything else!
@Linda_Corinne I’m pleased you have your results back and can understand your disappointment but glad you are having two consultations to talk through your next steps. How has your post surgery recovery gone?
@salbert I’m not sure where that fat is coming from you looked so fabulous when we met. Great news about your upcoming surgery and that they are adding cosmetic touches for a more even look. I’m so in awe of these surgeons and what they can do to make ladies feel more like themselves after
@jayveebee Hope you are feeling ok the day after your first Kadcyla.
Has anyone else noticed that @arty1 has now officially become a Community Champion? Well deserved to be chosen to do this role as a volunteer to help others not feel so alone.
I get the back buzzed and am growing a longer pixie cut on top to style it more so I really notice the growth! I’ve had 6 Kadcylas and am also on tamoxifen. Just got my hair cut this morning and my hairdresser was commenting on just how thick it is! Here is a photo of the top of my head (lol)
