HER2+ and need some buddies

marionse25 · 5 September 2024 10:37

Sorry you have had hard times. i had my operation a week ago and was very scared. Everwybody was caring and gentle, the anaesthetist took my needle phobia into consideration and I fell asleep in seconds. You will be fine.

The Elle story is going to cause confusion. Have a look at Liz O’Riordan podcast or instagram feed on this. Elle was not clear on what she had however it seems it was stage 0 dcis that does not need chemo… she had lumpectomy which is the main treatment for dcis. If hollistic natural treatment was so efficient then doctors would recommend it. They don’t and there is no evidence. I am afraid it is also marketing for her natural product business. Trust your doctors and medical team!

In your pocket today. All the best!

Take care

Marion

salbert · 5 September 2024 12:44

Hello, my dears

Firstly, GO @chakakhan !!! YOU’VE GOT THIS! YOU WILL BE JUST FINE AND WE ARE ALL CHEERING YOU ON!! Let us know how it goes. You are doing the right thing.

As far as Elle MacPherson is concerned, frankly I think she can do one. I think she is irresponsible and I am very sceptical because she is always promoting her wellness company. Without treatment, BC will develop into Stage 4. I think she is an idiot. Sorry!

@arty1 I agree and it’s why I put my pic up. I’ve always been extroverted and my natural response is to reach out and make friends, especially in a situation such as this, so I thought people might accept me more if they could see who I was. That is no criticism of anyone who would rather not, it’s simply that I have found this whole BC journey a million times easier and better for having found so many friends who are also going through it. I think sharing our experiences is vital so that other women are informed. I, too, have been surprised how common breast cancer is. One friend told me we have the common cold of cancers. I like that analogy.

I LOVE your idea of a Breast Cancer body art calendar. What a stroke of genius. Really happy to be involved in any way if it does go ahead.

If your Dad could do all that with his health problems and age, then I can too! Thanks for the encouragement.

Hi @jeml Woohoo!! You are halfway! You are smashing your way through chemo. Way to go. Most of my hair came out. I likened the stages as follows:

Michael Bolton
Paul Whitehouse in The Old Gits sketches
Gollum
Hillbilly Inbred

It was when I reached the final stage that I realised it needed to be shaved off! I now like to think of myself as resembling GI Jane. No matter that I don’t, it helps to tell myself this. As for wigs, well, you couldn’t keep me away from them. I had to stop myself from compulsive purchasing of them in the end. I now have six. I think the blonde one will put in an appearance at Mamma Mia - The Party to which I am going in mid-November with my girlfriends as a celebration for getting through the bulk of my treatment. You enjoy those wigs. Post a pic if you are up for it. I love to see what we all look like.

@marionse25 I think your cat sensed that he was off to a rescue centre and decided it was time to move in once and for all. Then changed his mind! I love that he adopted you, so you adopted him. That’s what I love about cats. They rule us! I’m so sorry you aren’t at Sutton on Friday. I thought our trips may coincide. One day we’ll get it right. Hope the pain and tiredness does one soon.

I have just had a super healthy salad for lunch and covered it with cashew nuts and cheese. Oh why are high-fat foods so delicious? That’s just reminded me of the large flapjack in the cake tin. Must away!!

Love Salbert
xx

jeml · 5 September 2024 14:04

Oh dear those hair loss stages made me chuckle! You have to have the odd laugh and joke with it all… my dad is bald with a beard so when the time comes im going to draw on a beard and have a selfie with him
Told my 2 year old about my hair so its not a shock for her… she is scared of my wigs though sat on the wig stand bless her. I got some beautiful real hair ones! Im starting to think its the way forward now… all celebs seem to wear them.x

naughty_boob · 5 September 2024 14:07

Hi @chakakhan

Lovely to hear from you but so sorry to hear of everything you have been through. It’s wrong that you have had to fight for this, you deserve better.

You are strong and you can do this.

Like @salbert don’t get me started on Elle MacPherson… she is selling a book, well what a surprise. Who do you know who has actually been able to see more than 5/6 different doctors (I’m including junior doctors, breast surgeon and oncologist) through your journey, let alone 30+ but then she is rich. I’m sure the whole story will come out soon, as we have seen on this forum some people with HER2+ are not offered chemo/herceptin/phesgo as their tumour is low grade or size and the side effects outweigh the benefits BUT they will be offered surgery that SHE had, so she didn’t totally shun traditional medicine!

Dr Liz O’Riordan has been on TV and social media saying it’s irresponsible as some people will say well Elle managed to survive her aggressive cancer with holistic medicine and so can I. Most won’t have the money to pay for it all, including nutrition and exercise. I’m not knocking holistic medicine, I’ve had aromatherapy massages, reflexology, looked at my diet and increased the amount of fruit and vegetables (eating the rainbow), do yoga and Tai Chi, all of which is holistic. Only yesterday I did a Food and Move Wellbeing Day, we did Yoga, Nordic Walking, making our own energy balls and edible garden (making own herbal tea) at Penny Brohn near Bristol. They promote Integrated Medicine which uses a combination of therapies and lifestyle changes to treat and heal the whole person.

Personally I took everything that was offered and asked questions to get them to justify why it’s was the best option. I did my own research on reliable sources, read Dr Liz O’Riordan and Prof Trisha Greenhalgh’s book The complete guide to breast cancer. At the end of the day I would trust a doctor with the evidence to back it up rather than some holistic treatments with no evidence. I see the holistic side as an add on/treat rather than ‘treatment’.

Love to you all

norts · 5 September 2024 18:54

@arty1 I’m well up for a calendar too. Lumpectomy scar, axilliary node scar and all. Let’s do it.

arty1 · 5 September 2024 23:05

@norts I think as soon as I can I need to make it happen x (just need to get my mastectomy and chemo out if the way first )

@pennyp I’ve got a goody bag with a knitted cushion too… like you I may lose it to one of the cats !

arty1 · 5 September 2024 23:15

@chakakhan I hope surgery went ok for you ,I’m so sorry you’ve had to wait so long … that’s utterly ridiculous .

@marionse25 I hope your pain is a bit better and you are getting some rest x

@salbert - believed if it not I’m an introvert but I do like to “put a face to the name “ I hope my dads experience reassures you a little and you can plan some fun downtime in between sessions in October.
Noted about the calendar ! , it Would be an amazing way to raise awareness .
The hair loss stages did make me laugh !!

@jeml it may be she finds them a bit scary because they are on stands, she might be ok when you are wearing them x

Don’t get me started on Elle McPherson , I’m assuming she is just trying to drum up business for her latest alternative therapies , it’s so dangerous , women could be looking at her and saying “oh she’s cured herself with alternative medicine “ if the damn stuff worked people wouldn’t have died in their droves from curable things before such everyday staples like antibiotics etc existed .

jeml · 6 September 2024 07:37

Yes its just the stands! She is fine when i wear them and tells me i look pretty haha x

jeml · 6 September 2024 07:41

Just another post ladies if you dont mind!
So i had my third round and i have my first mri scan coming up since starting treatment on the 16th. Feeling slightly nervous about it! Even though i can feel massive changes in my breast… and it feels like my other breast just after 2 rounds. I can still feel lump but it feels teeny and it takes some finding which i know is a good thing. I just wanted to ask if anyone got any shrinkage on midway scan? Thank you, jemma need some positives.xx

naughty_boob · 6 September 2024 09:13

@jeml we all get the worry, I had surgery first so I haven’t had your situation but read many posts on chemo starter groups for those that have.
All I would say is listen to your body, try to do something to distract yourself as much as you can. The scan will come and hopefully you will get the results same day or get an inclination that the tumour has shrunk
If anything chemo is good at shrinking tumours.

Also don’t ever apologise for posting. We are here for you.
,

salbert · 6 September 2024 09:57

Hello gorgeous ones!

Well, all I can say is that Elle MacPherson had better never pop up on here or she’ll get torn to shreds! I’m so glad the fabulous Dr Liz O’Riordan has spoken up about this so quickly.

@arty1 I think you have your next project sorted for when the mastectomy and chemo are through. It’s just such a fabulous idea. It could be so beautiful, creative and body positive AND raise money. Now I see why you are called ‘arty’!

@jeml I have decided not to feel nervous about scans anymore although that is just a decision and is, of course, much easier said than done. I know lots of women from my February Chemo Starters who had shrinkage of tumours. I think most of them did. When I got my histopathology results after my mastectomy, it turned out the chemo had got rid of every last trace of DCIS. So yes, yes I won’t be at all surprised to hear that yours has shrunk too. Please let us know.

And shortly I am off for my meeting with my radiotherapy oncologist and for my first saline boob pump-up. My current earworm is ‘Pump up the jam’ for obvious reasons. I have to really try hard not to go in singing it. My friend used to be married to Angie Brown who sang ‘Why waste your time, you know you’re going to be mine’. Could I ever be in a room with that woman and not start singing it? I don’t rate my chances!

xx

jeml · 6 September 2024 10:13

Aww thank you so much! I love this site…women supporting other women
Well i think its common with the her2 type to get response and apparently it responds well to chemo too!
I have 2 weeks ish really for third round to even do more magic on it. I think having scans and waiting for results are always nerve wracking no matter what.x

marionse25 · 6 September 2024 16:29

Hi Everyone,

Almost the weekend!

I am just back from the Marsden and got most of my results from surgery which was 9 days ago. My onco started with good news, I don’t need to have radiotherapy, then announced that some cancer was found and that is when I bursted into tears. It immediately meant Kadcyla and 9 months of canulas. My onco stopped me and said he wanted to discuss another option as he knows my veins and canulas are a struggle. So although the standard protocole is Kadcyla, there is no study to establish the efficacy of kadcyla vs phesgo. He went through the Kathryn and the Affinity studies which I was already familiar with. I can stay on Phesgo and could get additional treatment (tablets ) to reduce the risk of recurrence. He believes the difference vs kadcyla would be small. I would also get Letrozole starting in October although he needs to check that my chemo induced menopause is permanent. I was not before chemo and women in my family have a history of menopause in late 60s which is unusual.

I was feeling a bit better when I left but now wondering whether I should opt for kadcyla despite my vein issues as I can’t have a port due to heart problems. Also a bit confused about no radio, when my previous onco was adamant I would need 15 sessions. I think some of you have radio even if you had no lymph node involvement?

Saying that, happy not to have radio on my freshly new pancakes. I imagined them all burnt tbh! It also means I can start planning for a scar coverup tattoo, which would not be possible with radiotherapy apparently.

Otherwise I am still in pain after 9 days and I have developed cording overnight which is quite painful. I won’t be given anything for pain unfortunately. Last night was really bad and I am absolutely drained

A lot to think about and deal with.

I hope you all have a peaceful weekend

Love,

Marion

marionse25 · 6 September 2024 16:44

Hi @salbert

Sorry for the late reply on this post my brain is all over the place!

Cats are amazing, I can’t believe how my new companion can be so well behaved after 5 years of sleeping rough. Took him to the vet last night who had not seen a cat that muscle-ly for ages. A lean mini panther.

Shame I was not in Sutton today. Hopefully we will manage ro meet at some stage!

Hi @arty1 thank you for the wishes. I am introvert too alrhough I am very assertive and I thought I would show my face too!

specialk2 · 6 September 2024 18:36

@salbert wow you look amazing and the hair, my 80s hair do was a perm gone wrong crossed with a mullet , mind you I’d take any hair at all at the moment, my baldy head feels like a fuzzy felt

salbert · 7 September 2024 11:39

Hello

@jeml I love this site too. I see it like a big safety net made up of arms that are there to catch and support each other when we need it. I was told early on that HER2+ moves fast but falls fast and with chemo and Herceptin, we can whack its arse into oblivion. She didn’t exactly use those words but you get the gist! Waiting for results is horrid. Denial and distraction are my way of dealing with it.

@marionse25 So good to see your lovely face! I’m happy for you that you don’t need radiotherapy but sorry that they found some residual cancer. I was told this is common but obviously it’s so disappointing. I know a couple of women on here that it happened to. It sounds like you have a lot to think about. (Menopause in late 60’s. Goodness me! ) Dr Ring is so good and so knowledgeable. I really do have total faith in him so I’m absolutely sure he wouldn’t say you don’t need radiotherapy if it wasn’t the case. I am having it starting next month as I had lymph node involvement. My cording has improved massively by doing the arm exercises that the physio at Marsden gave me. Be kind to yourself as you’ve really been through it and you’ve only just had surgery. You need time to recover and have a good think about it all. One day we will be at Marsden at the same place at the same time! Also, are you sure that you have adopted a cat? Just make sure it isn’t a cougar or something. Lastly, although I am extroverted, I have always been rubbish at being assertive. People tend to think extroverts are super confident but it really is more that you need constant social interaction with people. I have literally had to learn how to be assertive. I’m still surprised when it works but it does. I think they should teach it in schools. Actually, I went back to teaching Drama today and I noticed how much quieter and shyer my kids seemed compared to when I left back in early December. I’m putting it down to them being older and needing time to get back into the subject after the summer break, also me having been away for 9 months. I think we might have to look at assertiveness in the coming weeks. What a great thing to do. They are between 10 and 13 on a Saturday morning so I think it would really benefit them. Must get my thinking cap on.

@specialk2 Oh PLEASE dig out a picture of your 80s permed mullet. That made me laugh out loud. I actually did have a mullet after that hairdo as one of my ‘best friends’ convinced me that I would look better with one and that she should cut off my big blonde flicks. Needless to say, it was absolutely dreadful and everyone told me so. I have just got past the fuzzy felt stage now and my hair is growing back super fast. In fact I will post a pic now of me this morning, very excited to be returning to the drama studio. This is exactly 2 months post chemo hair. I’m intrigued to see how it returns. It seems dark and liberally peppered with grey at the moment. I have this idea that I will wear my grey with pride but have not written off a swift return to the hair dye aisle at Superdrug!

And now I am either going to Sage, the amazing vegan restaurant in Crawley for a late lunch or I am going to The Retreat animal sanctuary with a wounded seagull that my animal fanatic best friend has rescued this week. Apparently it all depends on how the seagull is doing. We once got in her car and there was a loose chicken in there! The Retreat will be better for my waistline and expanding thighs but then Sage do the most incredible white chocolate cheesecake so I’m torn.

Have a good weekend, my friends

Salbert
xx

naughty_boob · 7 September 2024 16:37

@salbert you look amazing and pleased yup our class went well. 10-13 years is a time when they start the hormones and moodiness Assertiveness awareness would be really good.

@marionse25 pleased you have your results but sorry to hear there is residual cancer. I hope you can decide with the help of your team what is best for you.

naughty_boob · 7 September 2024 19:56

Thought I’d share this thread as it’s such a positive outcome for a HER2+ diagnosed lady.

salbert · 9 September 2024 09:45

@naughty_boob What a lovely positive post. So great to hear those tales of people going through the HER2+ journey and thriving.

I got called a sophisticated skinhead yesterday which pleased me greatly. I’ll take that, I thought!

gi53 · 9 September 2024 17:05

Hi everyone. I’m late joining this chat as I’ve just finished treatment. I was diagnosed with locally advanced HER2+ breast cancer last summer and had 6 cycles of TCHP chemo followed by 12 phesgo injections, a single mastectomy, then 15× radiotherapy. I’ve been lucky as most of this has gone as well as possible. I managed to keep my hair thanks to the cold cap and stayed fairly healthy during chemo, healed up well after surgery and didn’t find radio too bad. I was also very lucky to have a complete response to chemo which amazed me as the tumour was quite big. Right now I’m so grateful for the NHS and would like to share my experience of treatment if it can help anyone at all.
One of the hardest things for me this year has been having strange unexplained symptoms that have made me worry about secondary cancer - a couple of months of weird burning headaches in the winter and pains in my upper back over the summer. Thankfully the scans have been clear but my mind has gone into dark places about recurrence. I guess that’s something we all have to live with and I can only hope that the worry gets less as time goes on.
My next oncology appointment is about to happen- so far I’ve resisted going on letrozole as my ER score is only 3 and I’ve already got osteoporosis. I’d be interested to hear any thoughts and as I’ve said I’m happy to share experiences of treatment.