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Cancer support thread #77 - newbies welcome

999 replies

InOtterNews · 21/12/2020 10:01

I couldn't see new thread so here we go...

Welcome friends old and new, to the most supportive thread on Mumsnet. Everyone is welcome whatever stage you're at (fears, diagnosis, treatment). Introduce yourself and say Hi

Good luck to everyone having treatment this week. Hugs to all - especially if you're feeling rubbish (physically, mentally, or waiting for results - ugh)

OP posts:
Thread gallery
7
Acinonyx2 · 10/02/2021 21:49

@merlotbythefire I'm FF and not crazy about being uneven either. Not sure I can face a double mast either though. I think you can request one though - someone else here did I think and got one after mandatory counselling.

merlotbythefire · 10/02/2021 22:09

@BitOfFun so sorry to hear your news. Sending strength for the coming days.

merlotbythefire · 10/02/2021 22:12

@bontopia Thanks for your thoughts and experience. You are absolutely right, Kadcyla is only newly approved, I guess I’ll have to just be patient and wait to see what happens. I’m sure I’ll cheer up again soon and carry on as before Smile

merlotbythefire · 10/02/2021 22:33

@Acinonyx2 Thanks, you are right I remember that too, but I’m afraid to say I can’t remember their name. Hopefully I’ll feel more reassured after my meeting with the breast surgeon.

AlbertCampion · 10/02/2021 22:43

Thinking of you, BitofFun. Hope you are surrounded by love and support tonight. Thanks

FizzyOrange · 10/02/2021 23:46

@BitOfFun so very sorry to hear your news and sending you a big hug xxx

TheFormidableMrsC · 11/02/2021 00:19

Firstly, the thread popped up, I had hidden previous ones as I wasn't in the right head space at the time. This is a good time to post and update as everybody was so kind to me.

@BitOfFun I am so sad to read your news, you were so lovely and supportive to me during my divorce all those years ago. I'm so sorry that you're going through this but wanted you to know that you left a mark on me with your kindness. I send you so much love and wish I could give you a hug. KOKO X ❤️

Since my post way back in February 2020 when I was facing a BC diagnosis, I did indeed get that as expected. Invasive lobular, her2+. However, I was very fortunate to have no lymph involvement and the tumour was contained. I had a wide incision lumpectomy on the day of lockdown 1, 3 days after diagnosis. Home early evening and back to single mumming without even a breather! Pathology came back with all margins clear and a clear sentinel node as I said above. My treatment was described as "curative".

I recovered very quickly. I had radiotherapy six weeks later followed by 4 cycles of chemo to be on the safe side . I used the cooling cap and kept my hair which was a huge relief. I was very fortunate that I tolerated all treatments very well with very few side effects. I am now nearly at the end of Herceptin injections (18 cycles) and have a mammo on 1 March with treatment completed beginning of April. I feel very fortunate that it's been OK. I feel very well aside from regular anxiety feelings that I am riddled with cancer and nobody has noticed and indeed my boob reminds me regularly (3 weekly I'd say) that it didn't like radiotherapy and I have a lot of odd nerve pain and weird feelings in a boob that I now feel completely detached from and is an alien on my chest if that makes sense.

I know I've been very fortunate but I am not complacent. What scares me is the speed with which this cancer developed. I had a clear mammo less than a year before (I was on a clinical trial with regular mammo's and ultrasounds).

It appears that the double daily dose of mini pill and Norethestrone that I was prescribed to control peri-meno bleeding may have triggered my cancer. I will probably never know even though I will be requesting a post treatment meeting with my GP to discuss this. It seems to be a bit of a closed subject and while the BCN's agree with me, the surgeon said "no it won't be that but never take hormones again". I won't, believe me.

However, I am hopeful of a full recovery and long may that continue. I'm 52 this year, I have a 9 year old autistic DS and I am a single parent in the truest sense. I need to be here for him so keep everything crossed! I just wanted to post with some positive news. Thanks for all.

Bloodybridget · 11/02/2021 09:14

@BitOfFun I am so very sorry to see your update. Sending love and good wishes to you and your family.

Bloodybridget · 11/02/2021 09:20

@AlbertCampion poor you, the cold sores sound vile. I hope the meds clear them up speedily.
@Trumpton very good to hear from you and hope surgery goes very well next week. Do you know how long you might be in hospital? As IoM is out of lockdown, can you have visitors?
@merlotbythefire I have no knowledge or experience of your issues, but just saying hello, welcome and I hope treatment is successful. Waving at @bontopia too.
@Acinonyx2 hope they can do the MRI today.
@loubieloo4 hope your GO can put a rocket under the scheduling staff and get you seen soon!

HauntedDishcloth · 11/02/2021 09:49

Oh @BitOfFun, as I have no words I'm raising a metaphorical glass to you & yours in silent acknowledgement, & sending many unMumsnetty hugs.

HumphreysCorner · 11/02/2021 10:19

Thinking of you @BitOfFun

HC x

ClaireMil · 11/02/2021 13:18

@merlotbythefire
I saw your message about Kadcyla, and I know because it's fairly newly approved in a lot of countries, not many people have been through it as yet. I completed 9 months of Kadclya late last year. I found it far more tolerable than the Neo-adjuvant chemotherapy - not even faintly comparable to be true. I just popped out of work for a couple of hours (it only takes 30 mins to run through) to have the infusion, and aside from feeling very faintly nauseous for about 24 hours, the side effects were very minimal and I could do all usual daily activities, ate normally, and felt pretty much 95% my usual self. There was no way I could have even contemplated working on the Neo-adjuvant chemo, and was lucky to even leave the house for the week after each cycle, but Kadcyla was a completely different ball game. I know everyone has different experiences, but it is quite a different type of drug (an antibody drug conjugate) so is not known for making you feel hellish like the standard chemo treatments... Anyhow, hope that helps :-)

merlotbythefire · 11/02/2021 13:35

@ClaireMil
Thank you so much for sharing your experience, that is so helpful Smile
Like you, there is absolutely no way that I could work during the neo-adjuvant chemo, but it is good to hear that you had a totally different experience on Kadcyla. Whilst I’m perhaps not desperate to rush back to work just yet, it is very helpful to imagine that everything can be managed together when life does return to some semblance of normality!

BitOfFun · 11/02/2021 15:26

I've been offered a chemo drug called capecitebine, which is supposed to be well-tolerated. Has anybody here tried it?

Thanks a lot for all the good wishes, I really do appreciate it. I actually feel pretty okay, oddly.

Physically, I'm in the best shape I've been for months- the radiotherapy I had to my pelvis recently seems to have done the trick in terms of making it possible to walk unaided, and that's HUGE for me. I'm also pretty much off the Tena pants and pads, so yayyyy for that!

Emotionally, I feel in good shape too- I haven't cried, or felt like it. This just feels like the inevitable next step. I suppose it will get more scary as my body starts to break down. I think that my brain and liver are my two favourite organs, so I'll be pretty sorry to lose their function!

One of the worst aspects of this whole thing has been the pandemic; it's not exactly conducive to a bucket list! I'll have to start doing my sewing again while I still can. I'm reading a lot, but I can feel my eyesight deteriorating already. Maybe I should try to get back into shagging while I don't feel too fragile? Grin Even that's tricky on all the drugs, as my libido is seriously M.I.A. Sad

Any suggestions welcome! And I return good vibes to all of you. You are a bunch of pretty special women, and I'm happy to know you Flowers.

Bee0808 · 11/02/2021 15:34

Bof
Another poster de lurking after a nn change to say how sorry I am about your latest news.
You have been so kind to me over the past few months and I will never forget it.
I have no doubt that you will KOKO in your own inimitable style 😎 and I hope that the new chemo offered is helpful and tolerable wrt side effects.

No more news here other than the injection in my eye doesn't appear to have helped and I now have a swelling on my rid cage to speak to the dr about tomorrow 🙄

Love to all x

BitOfFun · 11/02/2021 15:47

Ah, thanks for that, Bee (that's my name IRL, weirdly Grin). The eye thing sounds so sore- I hope you get that and the lump sorted soon xx

gillmoregirl · 11/02/2021 16:39

@BitOfFun I haven't been in here a while and just popped on a s seen your news. This is shit to hear and I'm genuinely gutted. I'm currently on capecitabine and am halfway through third cycle. No major side effects. Tiredness which is helped by sleep. Some slight heat in feet at times which is helped by creams and staying off them but it's not been bad so far. I wish for you that you will LIVE as well as you can manage going forward. I wish I could say something deep and meaningful but I can't find the words. Wishing you lots of wine good food and laughs and libid permitting, good shags along the way. Sending a virtual hug. ❤️

gillmoregirl · 11/02/2021 16:40

@BitOfFun should read libido. Bloody auto correct. Xxxx

ANightLikeThis · 11/02/2021 16:44

Hi everyone, I’m new here but may I join you? I’m just over halfway through treatment for breast cancer, stage 3, Her2+, diagnosed last May.

@merlotbythefire and @bontopia I’ve just started Kadcyla treatment following my mastectomy in December. Prior to that, I had 4 rounds of EC chemo, then 4 of docetaxel + Herceptin/Perjeta, and 2 of Herceptin/Perjeta. The oncologists have switched me to Kadcyla because there were some residual cancer cells in the breast tissue that was removed, plus one lymph node. When they told me this post-surgery, I was utterly despondent at the idea of having yet more IV treatment/pre-chemo blood tests when I’d been hoping to ‘just’ have three-weekly Herceptin injections until September. But I’ve since reasoned that because the Herceptin etc wasn’t as effective for me, it’s lucky that this new treatment is available. I started immunotherapy last September so, as bontopia says, my Kadcyla is a continuation of that, on a three-weekly cycle, and will end this September.

It’s great to hear from @ClaireMil that the treatment was tolerable. I’ve only had one cycle so far (no. 2 is tomorrow), but afterwards I was fine apart from a headache that lasted a few days (but that could have been coincidental). Since then I’ve had no ill effects from it - though for me, I think anything would be a walk in the park compared with the docetaxel! They did the infusion over 1.5 hours and kept me in for 1.5 hours to check I had no reactions (I had none) but from tomorrow, the infusions will only take 30mins.

The oncologist has assured me that Kadcyla should be well-tolerated because it’s a targeted therapy - he explained that it’s Herceptin with chemo molecules added to it, so it delivers them straight to any cancer cells. Three weeks after my first dose, my regrowing hair/brows/lashes certainly seem to be staying put, thank goodness.

Merlot, regarding your surgery, I was a FF cup. I asked about having a double mastectomy, but the surgical team were very reluctant to remove the healthy breast. I could have tried to argue my case further, but the reconstructive surgeon offered to reduce the healthy breast at the same time as doing my DIEP recon. I was lucky to have this done in December, just before COVID restrictions tightened again, but it might be worth asking if this could be an option for you?

That was really long, sorry! But I hope it helps. I’m still navigating my own way through this arduous series of treatments - next for me is radiotherapy, in March - but I’m happy to help anyone based on my experiences so far. I unfortunately had emergency surgery for a haematoma three weeks after my DIEP, so post-surgical stuff is particularly fresh in my mind!

Flowers to BitOfFun

Starmer · 11/02/2021 16:57

Hello
Haven't posted for a while, but have been lurking on and off.

So sorry to hear your news @BitOfFun, and about the way you found out about it. I always like reading your posts, and your take on things. And I love your comment about your brain and liver being your favourite organs!
Like @gillmoregirl I found capecitabine ok - sore hands and feet (recommend lots of moisturiser and cotton gloves at night), tiredness, and diarrhoea were my main ones. I've also been diagnosed as pre-diabetic which is a known side effect - my oncologist doesn't think it's the capecitabine, but I disagree!

Sympathy to everyone else struggling with chemo and other treatments, and with the wait for news.

I'm feeling really well, 4 weeks after finishing chemo. Feet have finally healed, tiredness improving. Homeschooling has probably been good for me - has given me the kick up the bum needed to be more active! Slightly frustrating call from the Macmillan nurse the other day, who read the latest oncology letter out to me, and then told me she didn't know what investigations I needed next or when they would me. Hmm, helpful..... I think I sounded less than impressed, so she's going to speak to the surgeon and get back to me. Originally I was told stoma reversal would ideally be within a year of original surgery, now they're not even intending to see me until after that.

And waving to @gillmoregirl, and @Thymeout, my fellow bowel babes!

gillmoregirl · 11/02/2021 17:24

@Starmer Lovely to hear from you. Good that your recovering after chemo. Forgot to mention diarrhoea (stoma deals with that Lol). Will you not be due scans now? And dye test prior to reversal plans. I met my surgeon two weeks ago and even though my chemo finished 1st June he said that reversal would not be done until at least a year after initial surgery. Not sure if this is health or covid related. I had open surgery and can feel my scar nippy at times. Also can feel bloated in the evenings. Did you experience this. I will mention it to oncologist but each time I've been up it's a different member of the team and then I forget what I'm going to ask. My family are starting to get fed up with me discussing poo related subjects all the time. 😂😂

Also sending high fives to @Thymeout.

merlotbythefire · 11/02/2021 18:02

@ANightLikeThis
Thank you for such a detailed reply. Apart from missing my next, and possibly last, chemo dose our treatment plans sound very similar.

I hope your next treatment tomorrow goes well and you enjoy few to no side effects.

I like how your oncologist described the Kadcyla, mine is going to discuss it in more depth post-surgery so wasn’t very forthcoming at this stage, but I want to know what might be coming before we get there!

Radiotherapy was talked about at the start of my plan, but I don’t know if that has now been superseded by recent conversations - a question for my next phone call in a couple of weeks.

I’m absolutely open to reconstruction and corresponding reduction. Selfishly, I can perhaps see an opportunity to reduce my boobs in a way that dieting and exercise has never managed. They grew from next to nothing to comedyesque proportions during my first pregnancy and have just never gone away. DS1 was 21 on Saturday! I’ll have to talk it all through with the surgeon and go from there.

I’m so grateful for all the replies, they have really helped to calm my mind down again.

Noidea2114 · 11/02/2021 20:31

@Bitoffun I'm so sorry to hear your sad news.

seizethecuttlefish · 12/02/2021 07:30

Sorry to hear your news @BitOfFun.

Zorgothslugofdoom · 12/02/2021 08:01

BitOfFun so sorry to hear your news. Sending love and hugs to you and your family.

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