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! ☔️☂☔️☂☔️☂☔️
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!
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.
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.
@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! 💪
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.
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.