we'll be ok, I'm having my second fec on friday, so we can keep in touch and get through together😀 how's your hair? Hubby shaved mind off tonight as it was really sore at the folicles and I was fed up with hair getting all over the place! I'm surprised that I just feel liberated rather than vulnerable!
Stay strong ladies xxx
I've just had the genetic test but will have to wait 9-10 weeks for the results. I'm triple negative as well and 51, so was offered the test and decided in favour of having it - for my children's sake primarily. I have no history of breast cancer in my family. However, I do have Jewish ancestry, which apparently increases my chances slightly of having the BRCA gene. So, it's just a matter of waiting now, which I think is almost worse than getting the actual result. My consultant seemed to think there is only a very small change that I will have the gene due to the virtual lack of any cancers in my family, but then I could just be the one to strike lucky! Anyway, I do think it's better to know, than to worry and continue to wonder about this in future.
I have an appointment for genetic testing in November. I had a partial hysterectomy 10years ago but they left my ovaries, so if it proves I do have defective gene, i’ll Have my ovaries removed. I’m also doing it for my sister & nieces. We have got a family history of breast cancer but no one had had the test so far. I know it’s a difficult one but I so wish I had had the test done earlier - would have still had to have double mastectomy & reconstruction, but then wouldn’t have had to have the chemo!!!
I just turned 50 & am triple negative. I was part of a family history clinic and had annual mammograms, but never really talked to anyone about genetic testing. Apparently it’s only offered to those under the age of 50,
Just wish they had made this info more clear. Xx
I think i've been very lucky with chemo so far - just had one round of FEC. Felt tired and queasy for about 4 or 5 days and then pretty much back to normal with occasional tired spells.
I had my hair cut short a week before chemo, but I'm back to the hairdressers on Tues to have a crop, as my hair is very thick and not sure I'm ready to brave the shave or cope with hair falling out all around the house, so i'll go short and then see what happens.
I have a dilemma re. my coil. As I am oestrogen -ve (so probably progesterone -ve too) its unlikely it will be impacting on the cancer growth, but my consultant did say its a small risk to keep it in, and I should consider having it removed. I don't want to suddenly have to deal with periods too (after 8 years without any) so I'm wondering about waiting a couple of cycles and then doing it?
Also has anyone had, or considering having genetic counselling? My consultant recommended it (as I'm under 50, triple negative and possible multiple tumours on my MRI). I have my appointment soon, and I am starting to feel a bit anxious. I think I want to have the tests anyway (as I'd rather know) but I am just really hoping I don't have the BRCA gene. Not bothered for me (as I'd just have a double mastectomy and reconsruction), but for the implications for my children and siblings :-(
Thanks for providing more reassurance. Much of what you are saying sounds very familiar and altough it's unpleasant, we've obviously been quite lucky so far. I had problems with my period too, but I think that is not unusual. I was told that my period may stop altogether - wouldn't mind that, actually. Seems a bit much to have to deal with chemo and heavy periods at the same time!
Washed my hair this morning - I was really looking forward to that, as I am cold capping and hence only washing it once a week. BUT, sadly, I lost what seemed like an awful lot as I was rinsing it through. Bother! Maybe it will just thin rather than go altogether?! I had my legs waxed a few weeks ago and have barely any growing back there, which is great, but I can't have it all I guess!
Like you, I am doing lots of walking, supplemented by Pilates once or twice a week. I find getting out in to some fresh air and just keeping gently active really helps. My BCN told me right at the start of all this that patients who manage to stay reasonably active seem to cope better with the chemo. But of course that's only possible if you're feelig up to it.
I have had to give up work, as I am a nursery manager - defintively far too many germs going around there! I thought I would really miss it, but for now I feel oldly content with the lack of work-related stress, and my sudden new-found freedom to meet up with friends, do lots of reading, and generally potter about at home. I'll probably get bored with this rather quiet life eventually, but for now it's rather nice!
Enjoy the rest of your Sunday, everyone. It's sunny here, so I'm hoping to go for a walk with my lovely husband (He's been brilliant throughout - I'm very lucky!).
Thank you so much for your reassuring post! I'm really relieved to hear that you're having a reasonable time with EC. Obviously everyone reacts differently, but at least I know there is a chance that things might not be too bad. Your symptoms sounds pretty similar to what I am getting with my current regime of paclitaxel and carboplatin - manageable, if occasionally unpleasant. If that's all I get I shall count myself very lucky, if not, well then at least I know it's only for 3 months.
Have a restful weekend everyone!
Hi Ladies, hope you are all doing well now your treatment has started. For anyone looking for chemo tips there are plenty on my blog which many of us shared whilst on chemo last year: http://lifeafterlola.com
Also, right now the government has extra funding to allocate and we need to make sure breast cancer gets the priority it deserves. I've shared my story, please share yours:
Keep on keeping on...... xxxxxx
Well I’m hoping to be discharged today. They just have to check my liver function as it’s been struggling with all of the drugs they’re giving me. Latest setback has delayed my next FEC session, but hey ho....
Tizwas - thanks for your message. With regards the prune thing, i’ve Just been chatting to the oncologist nurse at the hospital. I had been struggling all week & was having lactulose twice a day without much success. I then started having 5 or 6 prunes with breakfast & all is resolved. She agrees that anything natural is best & has recommended I carry on with both prunes & lactulose. I’d forgotten how much I do like them.
I decided to shave my hair off before it started coming out. I went to a number 2 with the clippers, then a lot more came out 1 week after the 1st FEC. I’m not completely bald - just a little fuzz all over but no soreness.
Best decision I could have made. I loved my hair & definitely felt like it was one of my defining features, but cutting it all off wasn’t as traumatic as I thought. I love wearing my new wig, & once weather gets colder won’t mind the hats.
Positive thoughts to you all for a good week & big hugs xx
GabyF, As KTK said, Lactulose helps me, its very gentle and I take a dose before bed for the first few days of chemo (usually the steroids back things up) and this helps get them moving again. Good you are keeping positive when you can, its not always easy but we have to try don't we. I like my children to see that I am still doing normal things, working, walking, cooking etc.. not always possible but it was the big thing my daughter especially was worried about that I would be lying around ill all the time and she is definately happier when I am just carrying on.
Keep on being positive all you September ladies....big hugs..
I agree - we have to keep smiling and remember that all this rubbish we're having to go through will in the end get rid of the cancer. That's the goal and we mustn't loose sight of it. I try to focus on the good moments, even if they are very small and seemingly insignificant. I'm getting lost of reading done and getting back in touch with friends whom I haven't seem much of in recent years due to work/kids. I am really working very hard at staying positive, not just for myself but for my family. It is very important to me that my kids in particular see that there is a decent time to be had, even when we are faced with very difficult circumstances. I realise that not everyone can do this, but at the moment this seems to be working for me.
Tizwaz: careful with the prune juice - I went slightly overboard with that, as I was really desperate, and ended up with a lot of regular toilet trips! The other thing that really worked for me was a visit to my lovely cranial osteopath, who was able to increase the bloodflow to my stomach and liver and really helped to settle things there. This is a completely painless and gentle treatment that I have used for years to combat all sorts of minor ailments, including ear infections, stiff neck (my speciality), bronchitis etc. It doesn't work for everyone, but for me it's amazing. If anyone is in SouthEast London and wants to give this a go, I'm happy to pass on details.
So far my hair is behaving itself - Im cold capping - and has not shown any serious signs of thinning. Who knows how long this will last. I'm starting on EC in December and even if my current cycle of Carboplatin and Paclitaxel doesn't cause any serious damage, the EC may still cause hairloss. Is anyone on EC at the moment? Another patient at the hospital yesterday scared me a bit by saying it's horrendous!?
Pat 73 I'm just a few days behind you with the hair loss, my scalp is sore and I'm finding hairs all over! I really want to be brave enough to just go out bald but not sure if I'll be able to, can't bear hats at the best of times so scarves and wigs are going to drive me nuts!
Jacqs i hope you're getting better, sending hugs xxx
I've been taking senna regularly but I think I'll try the prune juice instead!
Keep smiling everyone, we'll get through xxx
Aly, i was given Emend which worked beautifully . No sickness and minimal nausea which the Metaclopramide soon shifted. The Emend is expensive but be assertive, you're worth it. X
Bottles of hand gel all over the house for everyone to use. Yes,separate towels for you during chemo. Sorry, no kissing if in full snotty mode. Ask if you can take an immune medication from a well known chemist.Thieves oil ( beggars oil) from a large on line company. Check with Onco for use of Echinacea? Keep your thermometer handy as your temp can zoom upwards in a matter of hours. My hubby moved into the spare bed for months, and I elected not to see my grandchildren if there was the slightest sign of a snail trail or sniffle. Hard with kids, though, as they always want to cuddle . Someone with kids will be along to give more suggestions. Good luck with treatment. X
Pat73, I fully agree with KTK, you do see a pattern as you go through FEC and know what to expect and what you need to take. but you do get back to normality after a weekish and then can enjoy some normal time. And totally agree with KTK, the hair thing is really difficult and emotional but once you have dealt with it, you feel in control and watching it go was so hard for me, I braved the shave when it became just too hard to sit with it falling out... sending big hugs... and oh by my first T cycle my hair was starting to sprout, now have some fluffy hair all over, like a very short skinhead!!
Just wanted to say hi..Had my first chemo today..I’ve got grade 2 IDC with lymph node involvement-ultrasound & biopsy showed 1 but I’m still not sure how they can be certain more LN’s aren’t involved-I’ve stopped asking for fear of sounding like a broken record 🤣 I’m having chemo first up, 1st one today was ok- been feeling mildly nauseous. I’m going to crank up the anti sickness meds from tomorrow to pre-empt potential nausea. I’ve a 4 year old with a cold so wondering how this is going to work over the next few days/weeks..
Any advice/tips words of wisdom much appreciated!
Hi. Sorry it took so long for me last reply but it was a tough & exhausting weekend.
I’ve got 4 chemo sessions left. There’s a possibility of a delay on the next one ( due a week on Thursday ). I’ve one more Fec, then onto the t part.
Pulapula - I was told that if you’re going to have flu jab it needs to be before you start your treatment. It’s always worth checking though. And yes, i’m getting paranoid about infection.
In between my Chemo sessions i’ve been taking vitamin c & zinc tablets along with few herbal things - although maybe i’m not best advert cause i’m The one in here ☹️
Take care all. Love jacqs xx
Jacqs, I'm so relieved to hear from you. I was getting worried. I'm glad they've worked out what was wrong and are treating you.
I'm doing ok. I just feel like what should be a simple chore is really hard work! Even getting the energy to go and drive and get my son today was hard.
Is everyone else obsessive about infection risks? My 3 kids all have colds at the moment. They use the hand foam when they get back from school and I tell them not to cough on me (!) but I don't want to isolate myself from them...I just keep checking my temperature
Also are we meant to have flu jabs or not? Noone has mentioned it...
Hi Pulapula & A Little Pixie,
apologies for the delayed reply. It was indeed time for hospital. I was admitted on Saturday evening & what they initially thought was neutropenic sepsis actually turned out to be blood clots on the lung & pleurisy. They’ve been treating me with antibiotic drips, blood thinning injections & lots painkillers. I do feel a lot brighter today. On a more positive note, they don’t think the infection in my central line is anything to worry about but will know for certain on Friday when latest blood culture tests come back. I’ll be staying with the lovely NHS till the end of the week, then will be reviewed. thanks for your messages & hope you’re all doing ok too xx
Jacs, How are you doing today? Sounds like you are having a really time with it all. Sounds serious so hospital is the best place for you to be.
Hi Pulapula. I’m also on Fec. After each session I have had 3 days of steroids which do seem to help alleviate a lot of symptoms. I’ve then had 5 days of the injections. I’m not sure why hospitals differ so much but I would definitely ask them about this as I understood both were important for recovery from each session.
i’ve got a central line instead of a picc & had same issue with district nurses. I now go to hospital once week to get it flushed & dressings changed.
Had my 2nd Fec 10 days ago & have just been admitted to hospital with pleurisy & potential neutropenia sepsis. So gutted cause it all seemed to be going so well.
hope you manage to get something sorted. Jacqs xx