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October 2018 Chemo starters

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Shi Community Champion
Community Champion

Re: October 2018 Chemo starters

Fi 👍👍👍😁😁😁wonderful news so pleased for you. Celebrate finishing chemo doing what makes you happy all of you, it’s a wonderful feeling and lots of us cried tears of joy and relief as we rang the ding ding out of the bell. If your units not got one then we can 🛎 🛎 🛎 on here with you 😘😘 and 💃🏻💃🏻🕺🕺💃🏻💃🏻🕺🕺with a bit of chemo jukebox tune bit of billy ocean when the going gets tough 💃🏻💃🏻🕺🕺💃🏻💃🏻💃🏻On for you amazing lovely ladies, get your meet up planned us oct17 gals had weekend in London last August for our blow out celebration 🤪🤪🤪well this journey blooming well called for it 😁💕💕✨✨✨Shi xx
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Re: October 2018 Chemo starters

Oooh wonderful way to celebrate ElliesMum! 🎂🍰🍩🍮🍪

I went out for a walk with my friend and my Grandog along Lytham beach.... It was freeeeeeeezing and raining but it blew the cobwebs away! Made a change actually...I havent had the energy to do much for ages! ☔️☂☔️☂☔️☂☔️

💗💪🏼💗💪🏼💗💪🏼💗

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Re: October 2018 Chemo starters

Yay Fiona, so pleased for you!!! 😊💕👍

Aneeebel, bird watching with your granddaughter sounds like a fabulous way to celebrate the end of chemo! What a cutie, with her binoculars. 🦅 🥰 It’s my husband’s birthday on Monday, so we’re planning a weekend filled with cake and yummy food!🎂 (The new fitness regime can start next week...🙈😂)

I hope you’re all keeping warm and dry. It was snowing quite hard in Oxford this afternoon! Xox 😘
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Re: October 2018 Chemo starters

Fabulous news 💜Fiona!! 🎉🎉🎉 x
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Re: October 2018 Chemo starters

Afternoon Ladies, I hope you're all well.

Good news with my genetics appt, I'm all clear. Such a relief for me 🤣 ElliesMum, I would recommend pushing for a check if you can.

Shi, thanks and yes I started on fluconazole on day 3 together with the GCSF injections and today I've started on the antibiotics. Temperature just about behaving itself but I am so tired, it's another duvet day this afternoon 😁 plus half a tub of ice cream helps the mouth 😉 Fingers crossed they all do the job 🤞🏻

Have a lovely afternoon and stay strong 💪💪
💜Fiona xxx
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Re: October 2018 Chemo starters

Good Morning Ladies 🎀

Badboob and Reddi....that's very interesting info with regards to genetic testing!
Hopefully you'll manage to get the test ElliesMum! 👍🏻

💜Fiona...how are you feeling? Hope your Genetics appointment goes well 🎀

ElliesMum...I'm not sure what to do to celebrate the end of chemo...nothing planned as yet, altho, my Grandaughter and I are doing "The Big Garden Bird Watch" over the w/e...does that count?? 😂🐤🐦🐧 She loves it...she takes the binoculars! Very professional! Haha!
Are you doing anything? 🎉🎉🎉
I'm really pleased chemo is coming to an end...but it still feels 'strange' in a way! As if I'm 'going to be on my own!' 🤔

Hope everyone is well.... Stay strong girls!

💗💪🏼💗💪🏼💗💪🏼💗




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Re: October 2018 Chemo starters

Thanks reddi!!!
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Re: October 2018 Chemo starters

Hi @ElliesMum: The 40yo cutoff was explained to me by my genetics counselor as being about limiting the testing to BRCA1, BRCA2, and PALB2; if I was younger and had a family history of cancers, then they may have also tested for another mutation -- I think it was the TP53 mutation, which is associated with Li-Fraumeni syndrome / early onset cancers. But Li-Fraumeni typically causes onset much earlier than 40yo -- more like childhood, teens, and twenties -- so it seems I may have the age cutoff wrong.  

 

BCC has some brief guides to genetic testing here and here. The rundown of family history factors that are taken into consideration is here.

 

But as I said, ask your team to ask! My team wasn't going to ask because they considered me low risk, but when I met with my genetics counselor she said they always test bilateral breast clinic patients under 50yo, and in fact, the BCC site suggests they test all bilateral breast cancer patients, full stop.

 

FWIW, my younger sister has been tested, too, and I checked: they did test her for CHEK2, and she's CHEK2 negative. I'm American and she lives in the US, and her private health insurance paid for the test because she had a first-degree relative with bilateral breast cancer under 50 (me!). Hilariously, they approved her test and she got her results before the NHS approved mine. But I went ahead with my testing because there was a chance she was negative and I was positive for a mutation. Her genetics counselor suggested that there may be a combination of small mutations across the genome, or an as-yet-not-identified mutation, in our family, given that I've thrown up 2 (or 3) different primary breast cancers before age 50. 

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Re: October 2018 Chemo starters

Thank you all for providing your experiences with (and knowledge of) genetic testing! It was both interesting and very useful to read the details of the studies you’re a part of, Badboob! 👍

Reddi, you mentioned the genetic tests that are offered to those over 40; do you happen to know if there is there any difference for those under 40? (I’m 33.) I will mention it again to my onc and see what she says!🤞

Good to hear that the T has been a bit kinder to you this cycle so far, Fiona. I hope you manage to keep on top of the oral thrush.

Big hugs to you all. Can’t wait for the final round on Friday! 😊 I hope you’re planning something fun to celebrate, Aneeebel! 💕💐😘
Shi Community Champion
Community Champion

Re: October 2018 Chemo starters

Hi Fi have you started your fluconzole tablets for that slight oral thrush? Please phone your unit if you’ve not got anything antibiotic wise, there is no such thing as slight oral thrush during chemo, please keep safe 💕💕✨✨Shi xx
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Re: October 2018 Chemo starters

@Badboob Thanks so much for sharing the information about your genetic test results and the studies in which you are participating! The research on mutations in individual tumors and development of personalized immunotherapy treatments is super fascinating. So cool that you've had the chance to take part.

 

For those asking for genetic testing 🧬, it's worth noting that, outside of research programmes like these, the NHS currently only tests for BRCA1, BRCA2, and PALB2 for people with first diagnosis of breast cancer over age 40 (and no big flags in family history). So the CHEK2 BC mutation is not part of the tests. As I understand it, this is partly because the mutation elevates risk, but not so much that it would strongly urge, say, preventive surgery, and all the more so because the mutation tends to be associated with hormone receptor-positive breast cancer, which can often be very effectively treated with endocrine therapy.

 

(FYI, I got tested specifically because I have synchronous bilateral breast cancer under age 50. Paternal grandmother and great aunt with breast cancer, and father with prostate cancer, were not considered sufficient family history to warrant testing, particularly as I am ER+/PR+ in both breasts and HER2+ in one. Negative for BRCA1, BRCA2, aand PALB2 mutations.)

 

Still, keep asking for the tests if you want them -- the genetics team do turn some people down, but they can't turn you down if your team never asks for the test. 😉

 

And good luck with your final (and next to final) cycles -- you're in the home stretch! 💪

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Re: October 2018 Chemo starters

Morning everyone, I hope we are all looking forward to the new week and what joys it will bring. My big “ treat” is an appointment with the oncologist and of course more blinking blood tests before No 6 next week. 😁.

 

So pleased Fiona that the docetaxel is being kind to you😉 long my it last. And good luck to those of you getting your last dose this week, you lucky things....👍👏😁.

 

i am not sure what the normal NHS protocol is for genetic testing. I am being treated at Addenbrooke’s in Cambridge which has close links to the university, so they have a massive research department and budget.

 

I got invited to take part in two research programmes. The first is the Personalised Breast Cancer program, which they are offering to all newly diagnosed people. It has been on the news recently as the purpose is to try and tailor treatment to an individuals genome. All very clever stuff, and in the future theyhope to be able to predict which gene mutations cause which cancers and either offer increase pre cancer monitoring and tailored treatments. Ultimately they hope to be able to “ correct” faulty DNA before if causes a problem.

 

The second was for those people under going neoadjuvant chemo. They are looking for cancer markers in the bloodstream to try and understand reponces to therapy and hopefully lead to improved cancer treatments in the future.

 

I come from a family where I am the first person ( in living memory ) to have BC. The only other cancer is an Aunt who developed Lung Cancer aged 80 and died three years later in her sleep from a stroke! 

 

So it came as a bit of of a surprise when they found this mutation on my chek2 gene! While it is not as bad as the brac1&2 gene. It does increase your chance of bc from 12% to 24%. They think it might also be linked to bowel cancer as well. I have not been lucky enough to have a family of my own, so at least I can’t have passed it on, but my sister is of course worried for her daughter! The NHS will offer DNA testing to my sister and if she is chek2 then her daughter. 

 

Elliesmum, I think if it it will put your mind at rest you should press for it. At least you will know what you are dealing with.

 

Sorry for the rather long ramble but I hope you found some of it of interest.

 

Hugs x

 

 

 

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Re: October 2018 Chemo starters

ElliesMum, I agree, ask for the test. It's a simple blood test but results take a while to come through. I'm tn and because I'm under 50 my bc consultant decided to offer it to me. I've got my appt with genetics tomorrow so hopefully that means I'll have the results and that will decide next step of surgery.

S/e of no 5 are considerably less than last cycle so far, I'm pleased to report. 🤞🏻 it continues that way. Think I did too much yesterday though, a 4 mile flat walk with a hot chocolate stop in the middle 😁 I do have some joint pain (my onc has started me on injections from day 3 this time and for 7 days) and slight oral thrush again but so far I'm coping. Let's hope I can keep the temp down this week and not have a Casa NHS visit again.

Hope you all had a good and healthy weekend. My parents left yesterday morning so that me and hubby could have some time together 💕

Aneeebel and ElliesMum, I hope you're both fighting fit for your last chemo this week 💪💪🥊🥊 I really can't wait to be done with chemo 💩 .

Take care ladies and have a lovely relaxing Monday 💐💐
💜Fiona xxx
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Re: October 2018 Chemo starters

Yes ElliesMum...ask again about the testing!
It would obviously put your mind at ease and we all know we have enough on our minds at the moment without something else to add to it!
It was my BC nurse who suggested it to me... I hadn't thought about the test to be honest!
I don't know if it's of any relevance to having the test but I'm ER positive!
Hope you manage to have the test at some point x
Not long now to C6!!!! Hope you're well! 💗

Fiona...hope the side effects are being kind to you after yr chemo last week x💗

Hope all you Ladies are fighting fit! 💪

💗💪💗💪💗💪💗
Shi Community Champion
Community Champion

Re: October 2018 Chemo starters

Hi Ellie’s mum, I was a tn and got the gene test ok at my trust but I know others have had to really push for the test at their trusts, if you want it darling you fight for it, do what ever you need to do to get them to let you have it if you want it, because as you can say to them, with all due respect it’s your journey not theirs. I know none of us like to make a fuss but you have to if you are not receiving the care you want. 😘😘💕💕✨✨Shi xx
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Re: October 2018 Chemo starters

So pleased your chemo went ahead without any issues, Fiona. Only one more to go! 👍

I was only told to take my dexamethasone steroids “morning” and “afternoon”? 🤷‍♀️

Interesting to hear that a number of you fellow HER2+ ladies are having/have had genetic testing. When I asked my oncologist about it, she replied that my limited family history and receptor status (I’m also ER/PR-) meant that there was unlikely to be a genetic link, so I wouldn’t need to be tested... I might ask again!

Xox 💐💕😘
Shi Community Champion
Community Champion

Re: October 2018 Chemo starters

Hi Fi great news about t being fine this time 👍👍we didn’t use the red dot or castor oil till after chemo probably bit Ott but didn’t want anything interfering with the chemo 😘😘💕💕✨✨✨Shi xx
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Re: October 2018 Chemo starters

Morning Ladies... From a wet and miserable Lancashire!!! 🌧☔️☂

Badboob... I'm HER2+ as well!! 😳
I have an appointment with the Genetics clinic in February -I did have one in December but re-arranged it as it was 4 days after chemo and I had zero energy!

💜Fiona... Glad everything went well yesterday... How lovely that your parents have come down to look after you! 💗 Hopefully you'll continue to feel well! 💪🏼
I also take my steroids 1st thing in the morning and at lunchtime! Whoops!! 😳

Have a fab w/e everyone... Stay strong! 🎀😘

💗💪🏼💗💪🏼💗💪🏼💗




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Re: October 2018 Chemo starters

Morning All

So No 5 at reduced dosage safely administered with no adverse reaction - yay, so pleased about that.  However, I found out that I'm supposed to be taking my Dexamethasone steriods 12 hours apart so my mind is wide awake, even if my eyes aren't!  I've been taking them first thing in the morning then at lunchtime. 

 

But it's so good to know that there's only one to go now - I've just got to get through these 3 weeks with no problems and then I'm on the final one.Thank you all for your good wishes and kind thoughts, it always helps to know that there are people out there going through exactly the same fears and worries and pooh who want to wish you well and care.  I haven't got to the stage yet where I feel strange about not having any more chemo and what's life like after - I can't wait to be past this stage, to be honest.

 

Shi, thanks for the tip off about the hair products - I've had a look and they both look interesting products which I might try out.  I'm using the Palmoil that someone had previously recommended (and also vitamin E oil) and although I don't necessary use it every day, my nails don't seem to be suffering any discolouration (I haven't even used nail poiish despite buying two lots of water based polish. The only issue I've had wiith nails was when my vein was inflamed and I've got a black mark on my thumb nail which is growing out. 

 

Well, time to watch something on Netflix I think - hubby has got work on his mind so he's already downstairs watching TV - the guest room is occupied by my parents who've come down from Scotland to  stop for a few days to look after me as hubby has to work over the weekend.  It's great knowing that there's such a good safety net for us, isn't it, while we're all going through this.

 

Take care lovely ladies and stay safe and strong.

Fiona xxx

 

 

Shi Community Champion
Community Champion

Re: October 2018 Chemo starters

Hi Fi 💪💪💪💪you got this Mrs 💪💪💪💪and we’ve got you 👭👭👭👭👭Oct ladies get your meet up planned your getting closer to it now ❤️❤️❤️It’s brilliant when you meet up 😁😁😁keep focused you are all doing amazing and don’t forget the red dot lush shampoo bar called new and Jamaican black castor oil to rub on bonce too, helps hair come back quicker and nice and thick 👍👍mishy18 from july17 thread was the hair fairy who tipped us all off in this and worked a treat 💕💕💕✨✨✨Shi xx