Good news about your bloods ElliesMum!! Last chemo!! Yippeeeeee!
They usually ring me on a Thursday afternoon so hopefully I'll 'be good to go'... 💪🏼
How disappointing about the test but at least your Oncologist gave you a bit more info!
I had an appointment with my Oncologist yesterday.... My mastectomy/lymph node surgery will be in 4 weeks!!!!! They used to do it 3 weeks after the last chemo but realised it was too soon so changed it to 4 weeks!!
I don't want to go... I might run away... 😫💔😫💔😫💔😫
Hope you're all well Ladies... Have a good day x 🎀
We'll have a party Shi... Ring the bell too! 🍸🍾🛎💃🏼
I said I was going to make a poster saying "Last chemo today!" and carry it through the hospital!! 😂😂😂😂
Hope everyone is doing well! Stay strong Girls! 💪🏼🎀💪🏼🎀 x
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.
First of all good luck Fiona for today, I will be holding your virtual hand and thank you all for your support. I feel much better today.
Very interesting to hear everyones next step. I will I’ll be having radiotherapy then Herceptin after my op. Being HER2 + has scared me plus I have tested positive for the chek2 gene. Not as widely studied as the brca1&2 but it still leads to an increase risk of breast cancer. So the genetic team at the hospital are keen to study my progress. It also has implications for my sister and niece.
Now then, what’s all this talk about hair growing back😁. I have been told to expect that what hair I have on my head will fall out with the change of chemo🥴. So I am jealous of you all. I too shaved my legs just around the start of chemotherapy and I have an interesting “stubble” on my lower legs, but my lady garden is now completely barren, much to the amusement of DH! I now know what it’s like to have a Brazilian ( without the pain)😉. But the best news is no pesky lip and chin hairs to worry about........
hey ho, onwards and upwards everyone.
My hair never completely dropped out... it's my remaining tiny wisps of hair that seem to be growing...no new hair as yet! 💗
ElliesMum... Thank you for telling me about your experience with your mastectomy... I just can't get my head around a mastectomy!
I have got 2 Knitted Knockers in preparation tho! 👙
Have a fab day everyone x 🌷🌼🌻
Afternoon everyone, glad to see we are all doing relatively well😉. I am half way though my 5 th of 7! My first experience of EC has been interesting to say the least. Gone are all the strange SEs of the docetaxel. To be replaced by an overwhelming tiredness. I feel better now but I just can’t do too much or I am wiped out.
Attend my friends funeral today who died at Christmas, sobbed like a baby all the way though the service and then set her daughter off at the wake. ☹️. Got completely fed up with everyone telling how well I looked! But the best comment was some asked what my prognosis was😱 What was I expected to say????
Anyway, very interested in what’s next for everyone? I know some of you have already had an op. I am set for a lumpectomy, but will know more when I see the surgeon early Feb.
Many congrulations to those of you just just about to have your last chemo. Give yourself a ⭐️ Gold Star.
Morning Elliesmum, good news that you've only got one more chemo cycle to go! When I finished rads I took in biscuits and cakes for the staff and I think that was quite usual. I'd meant to do the same for the chemo unit as well, but hadn't got round to buying anything when it got to my last cycle, so I took them in some chocolates to say thank you when it was Christmas. I think other ladies on my Oct '17 thread talked about taking things in for the staff when they finished chemo.
Hope your little girl is feeling better now x
The Birthday Girl had a lovely day, Thank you! 🎂💖
ElliesMum... how lovely that your Mum is coming to help out! You'll probably wonder how you managed without her! And now your little girl has gone to her Grandparents you can have a rest! (Try not to feel
too mean.. it'll probably do you good!) 😴💕
Yes, one more chemo to go! Ours are on the same day I think! 💪
Thank you everyone for thinking about me... I still feel ridiculously yukky! My temperature still isn't 'behaving' altho, it hasnt gone over 38* today so maybe it's settling down at last!! 🤞🤞🤞🤞
I only have my routine appt with my Oncologist and another appointment for an echocardiogram... nothing else as yet!
Maybe they've forgotten about me!! 🙄
Yes Fiona.... not long now until the 💩 chemo is finished with!!!! Yippeeeeeeee!
I hope you Ladies are coping with your horrid s/e... 🎀
Have a lovely evening xx 💐🌸🏵🌹
Stay strong! 💪
Hi Elliesmum - I just wondered what medical insurance you've been able to take out for travelling to the States. I know lots of people have been refused cover until after the end of all treatment, so it would be really useful to know of a company that's more flexible. Cheers.
FYI, I'm now 8 weeks since last docetaxel infusion (June 2018 starter), and I've kept all of my fingernails and toenails -- including a bunged-up toenail that my BCN was quite sure I'd lose because it was already so damaged! I did get Mees lines (white horizontal lines) on my nails during FEC, but these are growing out, and they were at times sore, but they haven't become loose.
I kept my nails trimmed short, especially right before each chemo infusion. I applied OPI cuticle oil every day, including during FEC. (I got mine from Nail Direct, but you might be able to find it cheaper elsewhere.) I painted my nails a very dark brown for the first cycle of T, but because my nails tended to be dry/brittle and prone to breaking before chemo, I was worried about not being able to moisturize them, as well as the effect of nail polish remover. So in week 3 of T no. 1, I stripped them and started applying Polybalm, which was trialed at Bedford Hospital, Cambridge, at least daily; I also applied sunblock if I planned to be outdoors without gloves/mittens. I kept up the Polybalm for 5 weeks after my 4th and final T infusion, and still use what's left once or twice a week, when my nails look a bit dry. 💅
I don't know how much any of this helped, if it helped at all; it might also be that I kept my nails because my T dose was reduced to about 80% because of other side effects.
Hi Badboob, I didn't use any oil on my nails, I think that might be buddyfan as Shi has said. I did use plasters though to try and stop my nails breaking too much! It didn't look great, but it did stop my nails from breaking too low down and being painful and it prevented me from catching them on anything.
I was on FEC and like you, found it made me feel exhausted and I slept alot too! x
l’ve been lying low since my 5th chemo on Tuesday. But have been catching up with everyone’s news on here. Gosh we are all going though this aren’t we! I hope those of you who have changed to Docetaxel are doing ok.
I have found EC to be a totally different experience. Boy has it wiped me out. I had a funny turn while they administer it and had to call the duty doctor, who when she arrived was even more stressed than I was. I suppose the up side is that I can sleep! Just that I can’t stop sleeping! I am just so thankful that I only have two sessions to go. How many more is everyone having, we must be getting to the end of this poop.
Very impressed Elliesmum that you’ve been to work, and completely sympathise with your sentiments about what people say to you! I work freelance and have turn down loads of work as I can’t guarantee the quality as chemo brain is a bit of a problem at the moment and is driving me mad! Hope your little one is soon over her HFM infection.
Anyone starting to lose their nails? Mine are very sore. I rang my BCN yesterday who was sympathetic but explained that all fast growing cells are affected by the chemo, and yes I could lose some or all. She suggested using plasters and sterristrips to hold them down!
Stay strong ladies we are all getting there, slowly........