The Lacies are back for cancer support thread 56 - all welcome!

[WhatWouldLeslieKnopeDo]

Hello again, and welcome to our 56th thread. Some of us have been here ages and others have just joined. I hope you've all made it safely over to the new thread.

An extra special welcome to anyone who is lurking and feeling a bit shy. We are all quite friendly and we definitely don't bite, so please do say hello if you'd like to.

All are welcome here. We started off as a breast cancer support thread many years back, but all cancer types are welcome and at any point in the "journey", even if you haven't yet been diagnosed. We have all had different experiences but there's almost certainly someone here who will understand how you are feeling.

Our previous thread is here.

I have started the new thread a little early, and I will explain why in a moment.

Sounds wonderful!

Thank you, I am feeling quiet calm surprisingly I'm expecting the worst and praying for the best,I'll update later.

Expecting the worst is probably the best thing to do. I just knew it would be bad news for me as the GP had already expressed her concerns when she referred me. I do hope your news is positive but if not there are loads of helpful lacies here. Between us I'm sure we've experienced most treatments.

Hoping for the best news for you bobdylan xx
I met with Dr.Chemo last night. I think I will be starting FEC-T treatment within 2 weeks but I need to have port put in my arm next week beforehand. I'm glad it needs a GA as it sounds painful. He also mentioned a clip to the area inside my breast. I want to get this going now.
He suggested I try the cold cap to help with hair loss - have any of you found this successful?
I'm still working out how and when to tell my DD she's only 4 but so switched on. They gave me a book called Mummy's Lump yesterday too. I don't want overload her. DS7 has severe autism so his reaction is really difficult to gauge but he notices when people are very sad so we will have to keep an eye on him.

Has anyone had a tooth infection during treatment? I have a tooth I was about to get replaced with an implant. Dr.C seemed adamant I should have it removed so no infection and worry about further dentistry once it's all over.
So many things to deal with
Hope everyone is doing ok (still rubbish at name checking).

Elephants are my absolute favourite animals.

Hi rocket, the only person who has cold capped that I can remember is boobz. She hasn't posted for a while and I'm not sure how far back you'd have to go to find her photos. However she had her hair cut short before treatment and it looked very good still by the end. I think it was unpleasant but worked quite well. The particular drugs may alter this though, I can't remember what she was on other than it was pretty strong treatment.

From being on here I've also heard that dental treatment during chemo is not recommended and people tend to get their teeth in order first if there are issues.

bobdylan. Hope today wasn't too traumatic. We all know what it's like. PS I've seen Bob Dylan in concert about 20 times. He is the number 1. Stick "Slow Train" on; take some deep breaths and come back when you want to talk.

And Chewing wonders why she's different. I had my lovely Sister in Law as a bridesmaid, dressed in pink and frankly she deserved a medal for the hideous outfit I put her in, but ......... Chewing has an elephant.

I will say no more. I'll let you draw your own conclusions .

Leslie I hope you are on the mend.

Rocket GA is always better when they're doing anything nasty isn't it ? Only advise re teeth is from my lovely next door neighbour. Fire fight. Get the minimum done beforehand and worry about the rest later.

Had bad news from my neighbour today . Her widowed Aunt had a biopsy last week and results yesterday (same unit as me) and has breast cancer.
My neighbour is already dealing with her terminally ill Mum. She'll be run ragged with appointments and everything, so we're going to try and coincide my appointments with her Aunt's where possible, so we can help out.
Had a lovely morning out with friend (where surprisingly we talked cancer, but she really helped) and then had a great aqua class with my other friends and a nice swim; so well set for tomorrow. Got home to find that my other neighbour had "gifted me" a Golden Retriever, but that's another matter

Waves to all the Lacies and so sorry I haven't read back properly. I'm a bit scatty and nervous about tomorrow (why ????), but I'm very jumpy and need a good kick up the arse.

Tutti you have been quite busy! I truly hope your nerves settle down re tomorrow. Best wishes!
rocket the advice re teeth is to get anything that needs fixing fixed before chemo. I hope it is nothing major in your case and you are spared the extra load!
bobdylan i hope your worst fears are NOT confirmed, but it helps to be calm when so much is going on and you are super anxious.

Hope all goes well tomorrow.
My bridesmaid also wore a dress - red temple robes. She looked very fetching particularly with the 'just married' sign on her head. She did have a long wee and a poo during the ceremony which is something most bridesmaids hopefully wouldn't do

Evening Royal, hope you have had a good day.

See chewing, my wedding might not have been quite so glamorous, but my sister in law didn't wee or poo once during my ceremony.

Thanks for the arse kick.

chewing!!!

Finally home from hospital! Didn't get down to theatre till after 12 but it's done now. Guy doing it thought he was doing me a favour by tucking the port away as far out of sight near my armpit. Downside as we all know os that there are loads of nerves endings there so my arm hurts lots

So another full on day tomorrow - first dose of herceptin means I have to stay on the ward for 6 hours. Mightily sick of this

tutti glad you had a good day so you're all set for tomorrow. Wishing you all the very best for surgery and hope they get it all this time. Sorry to hear about your neighbour, that's just too much

rocket I tried the cold cap on my first cycle of chemo but really hated it and my hair fell out after 2 weeks anyway so I gave up. Mrs is right in that I think boobz was the only success story. I can't remember what regime she was on

Well I'm still no better off went hospital with my husband met dr said its not bad news then said well we've no news pathology still inclusive doing more stains might take 3 days might take longer, asked if I'd tried steroid cream said refer me to a dermatologist my husband said whatttttttt then he said ok we'll leave it for moment said might need go higher pathologist to check he was down playing it this time compared to last week clear mammogram etc and then he said your very anxious I'll give you zanex I couldn't believe it so I still don't know.

Oh Bob; that's just awful. I'm so sorry, I have no good advise, apart from hang on in there.

Minty Ouch.

bob that is awful. I think we're all grown up enough to understand that these lab tests can take longer than expected but then we just need of be told that there are no results, not led down the route of well it could be good news ... or it could be bad....

And to be told you're anxious..... have! That would be an understatement. Your head must be in such a spin . I do hope they can get you definitive answers soon, I really do feel for you

Ha! that should say not have!

Sounds painful minty. Hope tomorrow goes ok
Bob that sounds like a nightmare! I wish they wouldn't get you to attend appointments when they have nothing useful to tell you. Hope the results don't take too long.

Evening! Bob sorry it's still so inconclusive, so stressful go go through
Rocket I'm considered a cold cap success I only lost maybe 30% of my hair but I started with a LOT. I had it cut fairly short into a bob. I haven't had to wear a wig or even hats but..... My hair is in terrible condition and there's little I can do about it. I had previously dyed it, so 7 months since I last coloured it the old dyed bits are a sad orange colour, I have a white streak and new curiously dark hair roots . On the plus side I don't look like a cancer patient, on the down side I look like I need a kind friend to take me to one side and steer me to salon! I'm looking at another 6 months for some normality.
I don't regret it though, the cold cap itself is not comfortable, there's a bit at the beginning where you think you can't take it, then that kind of passes and it is bearable. Hope that helps!

Hi everyone .

Leslie great that they spotted that before it kicked in. I had 15 months of jabbing needles in myself, so Fingers crossed that you can have an alternative to the tinziparin junctions .

Rocket I cold capped . It's cold . . .VERY cold and bloody painful for about 10 mins. About 2 days before the 3rd chemo (so 6 weeks in ) I started to loose some hair , the longer ones from top of head . Didn't loose any from back (where it was short) or the shorter hair from having it thinned out before 1st chemo.
My thinking was always try it , if it works - great , if not . . . .I tried . Lost lots of the longer length hair , but I was glad of getting a good start in getting my hair back .my treatment was 6 rounds of paclitaxel and carboplatin (not breast cancer) My cancer was stage 4 so huge chance of it returning and if it did I think if given the option to cold cap I'd do it again but cut it shorter.

Good luck for tomorrow tutti

Hope everyone is the best they can be (I've been truly hopeless at keeping up ! )

pepper I think having shed loads of hair worked in my favour as well. Has your hair changed ? I've gone from having a slight wave to full on curls !

Hello all, just catching up now...my heart jumps with your stories, I'm terrible with name checking but I send you all my best wishes and all the positive vibes I can muster....you're one fabulous herd of elephants (incidentally also my favourite animal - I used to live in Sri Lanka and got to interact with the Asian variety a little, they symbolise birth and positivity there).

I have caught my children's cold....it was absolutely inevitable and I'm hoping to ride it out with as much luck as possible. Though any tips or warnings are welcome! I have had my hair clipped down to about an inch, scalp was itchy and I thought may as well limit the fallout - I didn't realise it would stick straight out...it was very long and thick before and now I suddenly look very much like a bog brush...not a great look, but hey ho.

Hiya outlaws
I have the bog brush look too
Where you used to live was where I was married - I love it there but only visited twice

I'm on my phone so I won't reply to everyone but sending good luck to Tutti

Waving to everyone else

Gosh we are sporting some fetching styles these days, we really could put on quite a show!

Hi leslie I'm guessing you're struggling with hospital insomnia right now? I hope you're getting sorted and will be home soon

outlaws sorry you've caught the cold. I don't have any tips I'm afraid as in normal times I tend to just ride them out too. My DD is coming down with a cold which always leaves me scared for her. The cough's not reached her chest yet and I'm hoping it won't head that way

stila and pepper apologies for overlooking you both with regards to cold cap success. I wonder if it matters how much hair you have to start with. Everyone says I have thick hair but the reality is there isn't much of it so I guess the cold cap was always going to be a bit of a non starter for me? I guess the other thing that swung it for me was that I never really liked my hair and with everything else to put up with freezing my head to keep it was just one step too far. Although I always covered my head with a scarf outside the house I actually enjoyed the bald look on me

Thinking of you tutti you shouldn't have to be going through this again. It's enough to test the patience of a saint

Good to hear some cold cap stories. I don't have thick hair but I have lots of fine curly hair. It's got lots of frizzy bits too so that's what I'll expect to grow back. If I had a cute head and face I would totally just go bald - but I think I might look like a big potato - I have lots of lumps on my head I think.
On this subject - my MIL bought me a generous gift yesterday - but I didn't know whether to laugh or cry. A lovely big box of expensive Kiehls shampoo and conditioner and hair pak. I guess she thinks I'll keep my hair by using the right products. I don't know what to do with it all. What products are most useful for chemo - will I get dry skin/spots/smell bad?! I could exchange it all maybe.

Bobdylan I'm so sorry you are being messed around. I hope you get clear answers soon.

rocket I have really thick hair so decided not to cold cap and just cut it short prior to chemo. It is thinning out rapidly at the moment but as it's so thick it doesn't look too bad. My BCN even asked if I had used the cold cap as my hair looked so good .It was recommended that I use baby shampoo on my head so I use Johnsons and haven't had any scalp irritations from it. Kiehls shampoo is lovely but I'm not sure how gentle it will be for you.

Had an interesting appointment with the onc earlier. The cancer in my spine which I took to be a secondary is now being classed as a primary so I have dual primary cancer . I saw the scan of the supposed 'small area' on my vertebra and it looked quite large to me but I guess that might be their idea of small.
There has been a 'special meeting' held to discuss my case and the way forward. I was told that after chemo I will have rads for longer than the norm (for around 6-8 weeks) then will be monitored and scanned approximately every 6 weeks after that. That plan could all change though as it often does with me
Bloods are too low for chemo so will try again on Monday morning. What a palaver!

Hello all.
Tutti sending you loads of positive vibes and good wishes today.
Chewing, what a shame re the bloods. Hope they sort themselves out so you can get on with the chemo. I had 28 sessions of rads which is more than most on here had. Because I do not have fair skin and due the size of my breasts, my skin did get quite irritated. If I were to give you one piece of advice it would be to use extra virgin coconut oil. What a massive difference it made. I only wish I has used it from the start. Best of luck.
Waving to everybody else. Sorry for not mentioning everybody.