HER2+ and need some buddies

@belle1 That’s a glorious head of hair !

3 Likes

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! :smile:

4 Likes

Haha thanks Sal

2 Likes

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!

4 Likes

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?

4 Likes

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.

2 Likes

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!

8 Likes

@Linda_Corinne
I can understand you feeling disappointed :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

3 Likes

Sending you loads of positive healing vibes and buckets full of health. Hang in there! :muscle:

1 Like

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.

Have a great weekend, all.

Salbert
xx

9 Likes

This is a message from @marymop

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.

Needless to say, it’s lovely to welcome you.

2 Likes

Hi @sez and @marymop welcome to the thread.

@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. :heart:

:smiling_face_with_three_hearts:

5 Likes

@arty1 well deserved to become community champion I have found your posts really helpful in this difficult time xx

4 Likes

Hi all, anyone else HER2 + and hormone negative, be nice to find someone like myself x

3 Likes

Hi, I’m so grateful for the community here and our champions. It so helps when you are feeling mentally or physically rough to know you can come here and share. I got home from Kadcyla at 2pm yesterday and managed a slow sunny dog walk with my sis after lunch. The tiredness was kicking in by then. Cancelled pilates this morning as had a hot wakeful night from 3am. Felt ok by midday so I managed to drop daughter at work and walk the doggies again which brought on the sickness again so Ive popped a tablet. I wish i could share a video i just made of the corgis running in the woods. I had to catch and share their joyfulness.

6 Likes

Bless you @naughty_boob ! It was also lovely to see you in the flesh yesterday and you are every bit as lovely as I imagined you would be - I spent ages agonising over what colour hair to have :rofl:

4 Likes

Hi @marymop -I’m sorry you’ve had a breast cancer diagnosis but you are in the right place here

Yes I am her2+ but Er- , it was a bit of a shock when diagnosed last August as I was convinced I’d be hormone positive .
Are you recently diagnosed ?

2 Likes

Thank you @anb1 - I really appreciate you saying that :blush:
I remember @naughty_boob was the first person to answer my first post last year and I felt suddenly no longer alone

4 Likes

I forgot to say how much @salbert made me laugh about repurposing hip fat. I think a boob lift should be a given to every one of us, regardless, as a treat after finishing treatment. I could sure use one!

5 Likes

@arty1 it really is helpful I don’t know what I would have been like if I had not found this forum. I suppose like everyone we have our family and friends who are really supportive but to actually have such nice people who have been through it or are currently going through it really makes a difference. Xx

4 Likes