HER2+ and need some buddies

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And this is the knitted hair my cousin made for me. Do you think my relatives are not taking my plight particularly seriously?

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Very flattering :stuck_out_tongue_winking_eye:

@naughty_boob Oi you!!! :wink:

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@rec I am so sorry to hear that the cancer returned. You are going to have the same chemo that I was given. I am now two and a bit months out from it finishing the core six rounds and just waiting to find out next treatment (I had surgery after chemo). Had bloods taken yesterday to establish whether treatment has pushed me through menopause. I think i am still going through it as I still have regular hot flushes. I am finding it hard to think about another five years of treatment and side effects. But trying to just take it one day at a time. When do you start treatment? I recommend looking higher up the thread for advice on what to get for chemo. I also highly recommend sucking ice during treatment to help with taste and getting in the senna tablets and gaviscon (check with your treatment team that you can have these - I am assuming you can as you are having the same treatment as me but best to be sure). I’ll be thinking of you. Much love.

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@salbert loving the hair options your family have delivered to you. I think it only fair that they also wear them in solidarity. I think when you announce that the quality of the products they are supplying might increase exponentially!

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Thank you I start on Monday.
I have been taking letrozole, which I will stop before starting chemo, but then carry on for 5 years when I finish. To be honest I have had no significant side effects. Possibly one or two hot flushes when I’m stressed. But I had been through the menopause prior to getting cancer.
I have had my hair cut short and decided I actually prefer it short so there’s one bonus??? Do people recommend epilating legs or is it best to leave it?
Thanks for the support

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@rec

Thanks for joining the thread, treatment for HER2+ is usually longer than those on chemo or radiotheraphy…

As far as epilating your legs, I don’t think you’ll need to bother, one of the side effects of your treatment is hair loss all over. I had Paclitaxel and cold capped so saved most of my hair but other body hair fell out. I only partially lost eyebrows and eyelashes. Again you may want to check with your team, did they give you information on the side effects of your treatment?

Take care :smiling_face_with_three_hearts:

Sorry couldn’t resist!

I can’t believe you’ve already had your 3rd EC, well done. That’s a box ticked. Now onto weekly Paclitaxel. :grinning:

Have a lovely weekend. :smiling_face_with_three_hearts:

@naughty_boob I’ve still got one more EC to go. :frowning: Then I’m onto my 12 x weekly Paclitaxel. Still, I can’t believe I’ve got through 3 ECs already. You’re right, it does pass and you do get through it. Couldn’t believe it was possible after the first one. How frequently did you have Paclitaxel?

@rec I am feeling hard done by as regards leg hair. My head hair is now looking very thin so I am about to go onto cancerhaircare.com and look at recommended companies for ‘hats with hair’ as my wig appointment isn’t until 18th April. My nostril hair and underarm hair has done a runner but leg hair and unsightly bikini line, still resolutely refusing to budge! Let’s hope yours are less stubborn.

By the way, I thought the LGFB Wigs, Brows and Lashes online workshop was fantastic. Really informative. Highly recommended.

@frazzledmcsazza My cousin instantly asked me whether she should get knitting for Princess Kate. YES!, I said. :rofl: She will probably end up in the Tower of London and get her just desserts.

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@salbert
When is your last EC? I was on 12 weekly Paclitaxel and it was cumulative. Having it weekly means you get very few ‘good’ days and for me one of those was back on the chair and travelling for 6/7 hours so it didn’t give me much time to do anything nice :unamused:

Loss of nostril hair is so annoying, my nose was constantly running.

I reckon your cousin could start a new trend ‘knitted wigs for cancer’ could even rival brave the shave. Get sponsored for wearing one for a week! I looked at the photo again today as it reminded me of something and it came to me today Asterix th Gaul
image

:smiling_face_with_three_hearts:

These are brilliant!

I had the same treatment plan too, 4xEC then 12xPacli. It was cumulative, I felt reasonable up until about halfway and then had some fun and games with my digestive system.

I weirdly lost all body hair apart from my legs too… although most of it is back with a vengeance (great and not so great for a gal with PCOS!) but my hair on my head is going great guns now/- I’m about 10 weeks since my last chemo and I actually had to have a haircut this week to neaten it up! That was a nice milestone, I’ve ditched the turbans and the hats as was sick of them
(I never bothered with a wig.). I’ve taken biotin gummies and used a scalp serum but I don’t know if they’re anything other than expensive placebos!

XX

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@naughty_boob My last EC is scheduled for Thursday 4th April. That will be a good milestone to reach. Fortunately I am only a 25 minute drive from Marsden. My nose is now constantly running and yesterday I wore my first head wrap. I looked like a pirate! I liked it. Unfortunately I am forced to admit that you have something there with the Asterix resemblance. Oh dear, oh dear… Did I tell you that my cousin told me it took her 40 hours to knit that monstrosity?!!

@plum1 - Thanks for sharing. I guess I have to be prepared for any of the side effects you guys have suffered. I’m really thrilled to hear that your hair on your head is growing so well. That’s brilliant news. Now I am going to look up biotin gummies. Another addition to the Cancer Kit!
xx

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Hi there all you incredible/ inspirational ladies

Thank you for sharing all your stories, it’s been amazingly informative & helpful to have your tips and advice from across these forums.
Each step of my cancer journey although scary, I feel has been out of my control. The nurses and my Oncologist have been great but they don’t have the detail you’ve all shared here & with all the curve balls !!

I’ve always been a strong wife, mum & grandma and Ive remained this way, just as my family are used to me being (I don’t often let my feelings show).
But now; I’m so relieved to have found you all here, even though our situations & stories are not the same I’m hoping to be able to find a safe place to be scared, learn & to talk .
My journey : I was diagnosed back in Oct23, after finding a humongous 5cm lump in my left boob. The scans/biopsies also found at least 2 abnormal lymph nodes. So I’m officially fighting a grade3 invasive ductal carcinoma, which is ER & HER2+++
I’ve just had my 6th and final session of chemo (Docetaxel, Carboplatin and Phesgo). I cried as I rang that bell last week, for me it was more emotional than when I decided to shave my head (after my hair started coming out in huge clumps). I hadn’t even considered that ending my chemo would make me feel so emotional :sob:.
I see it as a hurdle I’ve jumped before I reach the next.

I think I’ve possibly coped so far by breaking each element of my journey down into these tiny sections; the tests, the results, the chemo, the symptoms, all without going far beyond to minimise any anxiety or loosing my head.

I’ve trusted my oncology and breast cancer teams so far and I’m now getting ready for surgery: @07:15 on 18 April; a wire guided wide local excision to remove area of the now shrunken tumour (lumpectomy) and full axillary node clearance.

To be honest I am most anxious about the node clearance; Ive read that it can be problematic due cording, pain, lymphoma or even loss of arm movement!

I’m also scared about my margins in the lumpectomy not being clear enough warranting additional surgeries. As my tumour was so big how can they achieve the margins. My question is, should I have just asked for a mastectomy straight off ? I guess there’s still time for me to get a second opinion or to change my mind.

Any advice, reassurances most welcomed .

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Oh @salbert , these are funny, and you’ve made me smile so. As well, like listening to someone on the radio, one builds up a picture of what they might look like and then when you see a first picture it’s always fun to see how close your mind’s eye was.

Slightly more serious on the topic of headwear, Anna Bandanna is very reasonable if you like those kind of styles: https://www.annabandana.co.uk/

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Hi @helsbels2

Welcome to the thread.

It’s not easy hearing you have cancer and trying to deal with it especially when you are the backbone of your family. I apologised to my grown up children as I wouldn’t be able to be as supportive to them when dealing with my treatment and emotions. They were great. It is very hard when you’ve always supported everyone else.

I had my surgery first, then chemo with Herceptin and no lymph node involvement, with Herceptin continuing and Letrozole with Zoledronic acid infusion at the end of April. I had bu lateral, tumours in both boobs and the surgeon said the outcome was the same for wide local excision and mastectomy but that the second was a bigger operation especially if you opt for reconstruction. Due to the sites of the tumours I only have one scar on each side to the side of my boobs. The surgeon was able to take the sentinel lymph node biopsy through the same incision. I was happy as I can be with the outcome. I will have yearly mammograms for 5 years.

Having said that, I’ve now had a genetics test and if that is positive I would be eligible for preventive surgery (full mastectomy). I have to wait another 3 months for the results :unamused:. When I first had my surgery they had not mentioned the genetics issue, the oncologist mentioned afterwards. Had I known, would I have opted for the mastectomy then, I’m still not sure. I probably would want all the information before deciding, which is waiting for the genetics results. Unfortunately the wheels grind very slowly, it took 6 months for them to decide if I was eligible. I had no family history but it was my bilateral status that mattered. The results could come back negative and I wouldn’t need more surgery.

There are many people on the thread and forum who have had different journeys to me, some multiple surgeries with no clear margins and now need mastectomy. My surgery was straight forward with clear margins and nodes. I’m sure your surgeons will have considered the size of the tumour and the size of your boobs as to whether a WLE is suitable. I’ve read some ladies with small boobs have mastectomy as their only option.

I would consider speaking to your breast care nurse with the option of talking to the surgeon again. Possibly call or message the BCN nurses who will be able to discuss this with you.

  • Helpline: 0808 800 6000 (Mon-Fri 9am-4pm; Sat 9am-1pm). Speak to our trained helpline team. No questions are too big or too small.
  • Ask Our Nurses: You can message our nurses here on the forum, or confidentially. Whatever you prefer.

I’m sorry you find yourself here, none of us want to be here, but we will support each other.

Lets us know how you get on. :smiling_face_with_three_hearts:

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@helsbels2 you are so welcome here. We digitally laugh and cry together and apart at varying times. It sounds as though you are doing just as I did, and I have read others did too in breaking the journey down and taking each part one step at a time so to speak. That seems to be a good way for many of us to cope.

Remember although your tumour was a certain size when found, it will be much smaller now you’ve had chemo. This is why they do chemo first, it’s easier for the surgeons to take away what’s left and get clear margins.

I had 2-3 lymph nodes involved so like you had full node clearance. and just like you I was concerned about lymphoedema, cording etc. I had surgery on 15th Dec and did get some cording for a while. It’s oh so important to do the exercises you’ll be given. Can’t say I managed 5 times a day, but I did keep them up daily for several weeks and sure enough slowly my cording disappeared. I over-did them a bit in the early days being so anxious to do all I could to avoid post surgery problems, and probably should have stuck with the gentle ones for longer but it all worked out in the end. The incision scar too is very neat and only shows if I lift my arm. What reminds me I’ve had surgery is the numbness under my arm that I feel each time I apply anti-perspirant. It was worse at first but now has settled although hasn’t gone away. I suspect I just have to live with that, but it’s a small price to pay overall. I also had a seroma develop under my arm and that was really uncomfortable for a while. At one of my follow up appointments the consultant drained it and after that it subsided and eventually disappeared. The body really is an amazing thing in how it adapts and finds a new normal. I used one of those little V cushions for sleeping & comfort under my arm:

It’s about 12” along the long edge. In my area people make them and donate them via the Hospital Charity such that everyone is given one during their stay in hospital and can take it home. But you can also buy them online on Etsy & elsewhere.

I hope some of this is helpful.

Lots of good wishes :heartpulse:. And I do :pray:t2: too x

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Thanks @naughty_boob and @suedot it means so much to have your thoughts.
Yes I also had a gene test due to family history of breast cancer, I was relieved to have a negative result and to pass that good news to my children. I’ll speak to the BCN and email my surgery team just to ask my questions. A shaped cushion is on my to get list as is scar tissue oil. As you say our bodies are the most amazing machines and I’m sure I’ve not treated mine with the full respect I should have. This cancer has certainly given me a new focus to do a number of things moving forward .
Sending you the best and hoping your gene test comes back with the results you need.
:two_hearts:

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Hi rec
I’m so sorry to hear your news , it’s daunting to say the least , we cope because we have to :heart: I’m just stubborn :joy: keep your chin up hun and stay strong
I had same chemo an 2 years of herceptin , nearly finished zometa
Eat well small and often and be kind to yourself resting is important for recovery take your anti sickness meds and anything that’s offered as it helps especially the mouth wash :heart: , I wish you well my lovely keep us posted XXX

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Hahahaha brilliant love them :heart: woolly hair who new it could be the next thing xx

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So pleased your genetics was negative, such a relief.

Scar oil try RenGen Oil (dupe of Bio oil) recommended by www.cancerhaircare.co.uk or Rosehip oil as recommended by scar therapy workshop at www.pennybrohn.co.uk

I used bio oil and was pleased with the results, had I known about the Ren Gen oil I would have purchased that.

:smiling_face_with_three_hearts:

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