Hope everyone is doing ok, love the photos Viv, Helen & Debs!
Lisa - like you my 2nd cycle was delayed a week and my hair started to come out that morning so I was not at my best but like you had to trust & accept the professional opinion and how taking the treatment when not well can make you feel. Yesterday I had it a week late and apart from being a little woozy on new anti-sickness meds, I’ve been fine. Best wishes to you xxx
I’m down to a grade 1 now but it’ll be guard off soon as it’s quite patchy, took my beanie off during chemo - if you can’t there, where can you?
Wishing you all a restful weekend xxx
Ha ha.. We cross posted!
Well done for picking yourself up and embracing the baldness...you are very inspirational Debs xxx
Need a selfie of bald shopping to inspire me to bare the baldness 💪
Hope everyone else is good 🤗
Just back from bump no 2... My new PICC is working like a dream xxx Still took 5 hours as the nurses are rushed off their feet. Can't see things getting better anytime soon despite nurses being an election hot potato..
Feeling wired 🤪 on steroids. My daughter made a lovely nut roast, onion gravy, roast potatoes and veg... I have eaten a whole side plate!!
Bumped into the cold cappers.. They all still had hair...but longer chemo so I am still happy to be a baldy!!
Debs.. Don't blame you.. I felt emotional when I was shaved but am liking having a smooth head like Yul Brynner!! Like to see the shock when I open the front door!!
Also doing my own wraps rather than ready made ones... Cheap but need to check for unravelling 😬
My hair continued to fall out after cycle 2, then shaved it all yesterday and although I had wobble about it, I wish I’d done it earlier. I’m still sweeping and seeing hair everywhere I go. Lol
Today we went to the local shopping centre and it was so warm in there , I took my hat off and didn’t give a stuff lol It was so liberating lol
who knew I’d be such a show off.
Started to clear a space for the Christmas tree yesterday but had to give up as it absolutely k-nackered me, then thought do I really want to be getting in the loft for a 7 ft tree, Steve has no balance for climbing ladders since his stroke. So we bought a small pre lit optic fibre one instead. Have to say it’s still in the box, might get round to it tomorrow.
Thanks for all that Lucylump, that was great info 😊. Wierd that it was larger but the Her2 ones seem to grow quick. I had nothing in my lymph nodes when I was diagnosed but my bc was about 6cm so I don't want any larger, ha ha.
Were you treated at ARI or are you further north?
Thanks for all your positive input xx
Debs, I had a good cry when my hair had it's big shed. I did feel better after it and now I feel like my baldness is just there and have accepted it...
Hugs to you xx
The surgery was 4 weeks after the end of chemo. I was expecting it to be 6 weeks after but I recovered really well. I had wide local excision (lumpectomy) plus total axillary node clearance. Unfortunately I found out yesterday that the margins after the op were not big enough so I have to go back on Monday get more removed but it was no problem last time so I am not at all worried about it and this time I will be out the same day which is even better. My original lump was 1.8cm and after the FEC it was measuring 2.1 cm (this was not my finest moment!) but the surgeon said that you could measure the same lump on 2 separate occasions and get different measures so he wasn't worried about it. Oddly (well I thought it was odd anyway) the lump in my lymph node was bigger than the one in my boob. It measured 2.2cm. I was convinced that this was huge for a lymph node and that this meant it would have spread to all the rest of them but when they checked the 12 nodes taken out none of the others were affected. Found this out yesterday and was delighted. That was what had worried me the most. Well done all you November starters. It is hard work but it does get better. You will get there. Xx ps Viv, I think on a previous post you said you were in the North of Scotland. So am I!
Hope everyone is having an ok day xx
I had my first meltdown earlier, when Steve finally shaved the last of my hair. But a good cry and I’m ready to go on again x
Had the first of my targeted therapy yesterday, injection in the stomach-
hugs to all who need it today x.
Thanks alot for your message 😊. Glad to hear you've got through chemo and feeling good.
My oncologist also said that EC would not gave great effect on size but the 2nd lot with HTP would see a much bigger effect.
How long after chemo did you have surgery?
Also happy to hear you are not having side effects from the targeted drugs on their own. Wasn't sure if a year of treatment would get me down...
Hope you recover well from surgery, what size was your original bc?
Sorry to hear you have to delay chemo Lisa, it's just bad timing having to go through this in the winter when every other person seems to be ill. Hope all goes well for next week. I am constantly obsessing about my health and whether my Chemo will be delayed because I have a bug... seriously have to stop before I make myself ill!! I've had a dry cough for a few days but so far hasn't got any worse..🤞
Funny the different advice we're given. I was told by my dentist and my nurses to only use mouthwash if I got ulcers or anything else in my mouth and dentist gave me superstrength toothpaste (5000) and told me to brush twice a day...I only got a couple of little ulcers and went away with 1 rinse.. Sore mouth def a side effect of chemo.
Hi Vaneysha and VicMac,
Just thought I would visit you from the July starters group. I am Her2+ as well and I finished my chemo 6 weeks ago. My hair is growing back and my energy has returned to normal. I had chemo prior to my surgery which was just over 2 weeks ago. I had FEC-T with Herceptin and Perjeta added in with the T. The first 3 cycles didn't lead to any shrinkage in my tumour but once I got to the T with Herceptin and Perjeta the difference was immediate. The lump shrunk to the point that neither I or the surgeon could feel it. My surgeon did warn me that I may not see change in the first half but that it was highly likely in the second half and he was quite right. So from my perspective The herceptin definitely did it's job and is continuing to do it as I still get it every 3 weeks and will do until next June. On it's own I am experiencing no side effects from it which is great. Obviously chemo can be a real struggle but for me it was definitely worth it and although I really hope I never have to now I am feeling better I would do it again if I ever needed to. Wishing you both and all the other November starters all the very best. I am thinking of you. Xx
Hi Chris yes my gums have been a bit sore I think it happens as I read a thread suggesting a soft toothbrush , I was given chlorhexidine mouth wash twice daily but I had a tooth out 4 weeks ago so I thought maybe that's why , the roof of my mouth is also strange, rough but not sore so thinking gums can be affected to
Hugs KC xxxxx
Sorry the hear that Lisa , I know we are all keen to get this over with , however it takes such a toll on our bodies that you have to be fit or I'm sure the after effects will be worse , and what a day to lose hair 😕 I know you were expecting it but I dont think we are ever really prepared chin up girl you are going to smash this we all are !!
Love and hugs KC xxxx
On this miserable grey day.
I finally got a decent nights sleep last night, all be it with the help of a sleeping tablet.
I felt rotten yesterday and was pretty horrible to my husband, bless him I know he is only trying to help. I kept saying is it worth it for a piddly 4% on the precitor test as to the benefit of having chemo for the way I am feeling.
Lisa so sorry yours has been put off I know with me I just want all this nightmare to be over with so due my next one on the 17th and with having this viral infection thing I just hope it can go ahead.
Ladies can I ask if any of you have had sore gums, god mine were bright red and really sore in the bottom half of my mouth and the toothpaste absolutely stung like hell.
O the joys of chemo
Sending hugs to you all xxx
Thank you all for your good wishes. Unfortunately they decided I wasn’t well enough for round 2 to go ahead, which I’m disappointed about, but I guess I have to accept their judgement. So it will be next Thursday for round 2 instead.
And for the icing on today’s cake, my hair has started falling out. Expected of course, but I still feel sad.
I think I might have to send out for cakes and ice-cream today! And binge-watch some crap on TV 😊
Something was sent to the US. My surgery was NHS. I think it was one node that showed tiny suggestion of cancer and it was sent off, I might be wrong, but yeah something was sent off. There's certainly been no hesitation from everyone involved that chemo is best for me. But I'm just being a horror.
The Oncotype DX is available on the NHS, and is quick ( 2 weeks - the fastest result I have ever received!).
I know you are private, and it is several thousand pounds if you are not covered. It is for node negative, ER + cancers to see of chemotherapy will provide a benefit. A portion of your tumour is sent to a lab in the US, where they look at the characteristics of your actual tumour and it is given a score of 0-100 in terms of recurrence. If the score is over 25, then you will benefit from chemotherapy. HER is one of the factors they look at, and people who are HER + are more likely to have a higher score (41% > 31). It may be that your team think that it isn't necessary as your has a grade 3, HER + tumour, so you are more likely to be a higher Oncotype, so it would be a waste of money.
Sorry if that adds to your indecision!!
HER2 really does seem to be the cherry on top doesn't it. Sorry you have to go through the chemo while still feeling that lump there. They sort of half recommended chemo before surgery to me, but I was having none of it (was still in denial about needing chemo at all) mine was only 2cm anyway, not big.
I've tried researching but end up in Google rabbit holes and coming away feeling like I'm going to die before I hit 40. Is herceptin really going to make a difference? I've been given an overall 86% 15yr prognosis if I take all treatment available (discounting radiotherapy as predict doesn't take that into account for some reason). From what I'm told the herceptin can only be given with chemo and that's why I'm having the chemo? Might be totally misunderstanding it all tho x
Vaneysha, having chemo before surgery only increases my 10 yr by 11% but I'm taking anything I can get...
I too am Her2 +ve which has a higher rate of reoccurring than the others so I've done lots of research and the treatment is pretty standard. My bc was too large for surgery 1st so I guess I'm the opp to you knowing the cancer is very much still there. I can still feel it so different psychology, willing the chemo to kill it off and shrink it as much as possible before surgery..
KC, my hair started falling out Day 14 and then a huge amount about Day 20. I shaved it off a few days after 2nd Chemo but some of it has grown believe it or not. Still have a stubble so all of it has def not gone. Compared to Debs and Helen I haven't lost any other hair...
Regarding your sore tonsils KC, I constantly get sore neck, tonsilly type thing, think it is a chemo effect. I often get it when I'm stressed or run down. I wonder if it's from subconsciously clenching my jaw/ tensing?
Helen I got energy today, went for 2 walks and did some Christmas shopping...your energising email must have inspired me....
Lisa, good luck tomorrow...
Not sure what the oncotype thing is so I'm going to say no. The oncologist did show me my prognosis using the predict tool, chemo increased my 15 year survival by 11% which seems tiny.
Like you post surgery (and honestly pre surgery) I felt fine, that's the real kicker about this cancer I suppose, it hasn't ever made me feel ill and wouldn't have done for a long time, but the treatment will, so it ends up not feeling like treatment at all but some kind of horrible torture. I keep directing my anger and frustration towards the doctors (passively, I hasten to add) but it isn't their fault and I know they're trying to help. I just resent the fact I seem to have no options other than accept the chemo and all the side effects and probably lose my hair for something that may never have been necessary, and no one will ever know if it was necessary or not. In a stupid way it would be easier if I did still have cancer as then there would be a tangible goal and something to actually see being destroyed. Abstract like you say, is right.
I have to get my picc line removed and reinserted as well, as that was causing a (second) issue with my heart, mine is on Friday, absolutely dreading it as like you I have such tiny veins. I'm really worried they'll put it in my chest now, which I was hysterical about last time so he put it in my arm, but I'm worried since my arm one has failed on me, they'll do the chest, which I really really didn't want.
Good luck for tomorrow Lisa...hope you can get on top of the virus tonight XX They are going to try and get a new PICC line in tomorrow ready for chemo on Friday...so am crossing my fingers that my tiny veins won't let me down again!
Vaneysha- sorry to hear you are going through all these decisions..if only we had a crystal ball life would be so much more simple, as evaluating risk when you have been on the wrong side of the statistics is really difficult.
You are HER + and grade 3- did they do an Oncotype Dx on your tumour, or did they use another predictive test? Like you I am having adjuvant chemotherapy because of a high risk of recurrence (of >30% according to Oncotype DX)...however like you I don't know if there are any cancer cells left in my body or not, as I didn't have any lymph involvement, so it feels really abstract. I feel pretty healthy and energised after surgery, so it is really hard to think about whether or not there are still cancer cells floating around. I wonder if you should just try the first one and see how you go...as you could stop if you found it unbearable..they can't force you to have treatment. I think all of us on here have found the wait worse than the actual thing; though I am guessing they will be extra careful because of your heart (and that is a really good reason for not going ahead with it or stopping after the first treatment).
KC- half my ladygarden (Deb's term!) fell out on day 14, and then half my head hair fell out on day 15, then it has stopped again....it literally fell out for a short time. The full shave was a relief as it was really itchy and annoying. I am guessing the same will happen on round 2- Debs can tell us!
LOL- about me virtue signalling about my exercising...I think it is more to do with burning off nervous energy and all the food I have been eating as I am at home more (I think I am eating more this week as I am enjoying the last few days of food being delicious and edible!!).
Vaneysha - I’m so sorry about all the difficulties and completely get the dilemma. RE the cold cap, I’m 5 weeks into chemo with a cold cap and I haven’t lost any hair that I can see. My hair’s pretty thick and I always lose some but it hasn’t increased. I also find the cold cap very tolerable. I put on a tiny bit of deep conditioner after I wet it before they put the cap on and then come home and wash it. I wash it twice a week and let it air dry and don’t style it beyond brushing it. Take care!
Hi VivMc and other forum members can I ask when did you start to shed your hair ? How many days after 1st chemo ? Just trying to get prepared
you all look fabulous by the way !!!
Love KC xx
Hi lisa sorry to hear about your A/E trip today I've started with a weird throat tonsils feel sore but no temp , mouth is rough and odd and I'm not sure if it's just the chemo attacking cells , I will follow your lead and keep an eye on my temp and ring if things dont settle . This chemo bingo card of symptoms is a strange thing , fingers crossed for tomorrow for you great news your cell count is good 👍 let's hope you get another ticked off xx KC xx
Lisa, so sorry you ended up in A & E but happy it wasn't anything serious in the end.. I had to go to hospital (from ringing hotline) after 1st chemo as hadn't pooped for 3 days.. it was a Sun day and thought they would just tell me what to take but ended up in hospital for 3 hours having bloods etc and felt like I was totally wasting everyone's time but nurses were lovely and never made me feel bad..
You did the right thing especially with temp. Glad bloods are all good and you're ready to go for next round!!
Hi Vaneysha, sorry you're still going through all this turmoil, especially with added heart issues. I am guessing you are getting the herceptin despite having lumpectomy to reduce the risk of bc recurring. Hope you get it sorted soon. Sending hugs
Thank you - these kinds of stories are the kind I need to hear. I know scalp cooling isn't always effective. Also I've noticed they all keep using hair loss as a broad spectrum. To me hair loss means total hair loss. But they seem to use it on terms of even hair thinning. I can handle hair thinning. My hair is thick (less so now unfortunately, combination of stress, not eating and postpartum hair shedding) but I have enough and can spare a bit.
I don't want to live in constant fear of cancer returning, and chemo/herceptin alleviates chances of that happening somewhat, but it's no guarantee. I'm constantly flipping between deciding it isn't worth the risk and having the chemo, to it being too many side effects and detriment to mental health and not wanting it. But if I don't have it, my anxieties aren't suddenly going to disappear, they'll just increase. I just don't feel I'm in a position emotionally to make the right call. I don't want to regret my choice either way, but I think I will, whichever choice that ends up being. If I wasn't her2 positive I don't even think I'd need the chemo at all, clear lymphs etc, clear margin of lumpectomy. Just this her2 making life so much more difficult.
So sorry to hear all that you’re going through Vaneysha. BC is hard enough, chemo harder and then to have additional worries about your heart and all the indecision must just be awful.
I met a lady recently who did cold cap and has a full head of blond hair still. From what you have said, your hair is thick so if it thinned a bit it shouldn’t notice as much as it would on someone with fine/thin hair (like me!). It definitely can and does work for some, so there’s no reason you wouldn’t be one of them. That’s if you and your combined team do decide to go ahead of course.
Sending you hugs x
Oh thank you lisa. I've been following this thread with every new post and really sorry to hear you went to hospital. Really hope you are feeling better soon. I've just posted a new thread on the chemo forum because unsurprisingly I'm freaking out all over again. Was meant to start chemo today but heart weird and turns out I have something called long qt and weakened heart??? Cardiologist said on Mon no chance of chemo any time soon and frankly I was relieved, but then yesterday I got called saying yes chemo going ahead but next Wednesday now not today. I was really upset and now freaking out all over again. Don't want it. They've removed the EC completely and will now be having 12x weekly paclitaxel along with herceptin. I just don't want it. I don't even have cancer since the lumpectomy. It is a sledgehammer to crack a nut in my view. I was after reassurance that the scalp cooling might work, just wanted some hope, but the person I asked wasn't very reassuring so I'm just all kinds of upset. Cancer and a heart problem both within 3 months and I'm 33. Low day today so genuinely....thank you for caring x
I’ve had a fun 4 hours in A&E today after my temperature went up to just over 38 this morning. Once again, I am amazed by and grateful for all the brilliant people working for the NHS. I was seen straight away and they were incredibly thorough, with blood tests, IV antibiotics, even a chest X-ray. My white blood cell levels were fine and they think the temperature is just from me having a cold, so home again now. I felt like a bit of a fraud being there with just a cold and temperature, but the nurse on the chemo helpline said I definitely had to go and not once did any of the nurses there make me feel like I was wasting their time, they were all incredibly kind.
Next EC due tomorrow and as my white blood cell count was OK they have said they will most likely go ahead, but will confirm when I get there tomorrow. Early night tonight and fingers crossed for the morning x
Aw, beautiful photo Debs.
Denim, happy to hear all went well with 1st Chemo, you will def dip after -5 days when steroids finish and neutrophils at your lowest.
Not sure I could have done any cardio so you're doing well.
Helen, you've just put me to shame. I feel I have achieved by just walking round the village for 30 minutes, even on my 'normal' week. No way would I have energy for anything else apart from cooking and cleaning. I guess if you were really fit before Chemo it would make a difference. My only excercise before was walking the dog as teaching full time was exhausting enough, ha ha.
My legs were so shaky yesterday (day 14) I didn't even manage a walk.
Hope everyone is doing ok 😊
Beautiful picture Debs!
Denim...day 5 and 6 was when I dipped as well...it only lasted a few days. From what everyone says, it is the steroids leaving your body,
I managed to take the dog for 30 mins on my worst days, but otherwise didn't get out of bed.
Today, I have taken the dog for an hour, cycled for 30 mins, done an exrecise class and a yoga class- just trying to squeeze some activity in before I am brain dead again!
Really kind of you!
The chemo day went fine - the cold cap gave me a pressure headache eventually, but I managed the cold surprisingly well. I felt pretty alien after the EC, out of sorts and a bit tired, but otherwise not too bad. Day 2 and 3 I felt nauseous and eating/drinking has needed to be forced, and low energy. Today is day 5 and mid morning my head became fuzzy and my energy levels nose dived!! I have been trying to do a 20 min cardio session in the gym every day, but today couldn’t manage to get to ‘cardio’ for long at all, and haven’t moved off the sofa since!!
How does this match your experience with your first EC? How are you doing since the 2nd session?
Great news Chris, glad you are feeling better. I had flu last year without chemo and that was bad enough...
Keep getting your strength back for the next one..
Hope your cold gets better soon too Lisa
Hi Chris , yes mine same day 9.30 bloods 10.30 see onc ,11.30 chemo longer day , I have a family wedding in London right before Christmas so travelling on the 20th and home the 23rd ( we are " up north" ) so probably going to be a bit tough but I really want to go and I'm homding out that 2nd time I k ow what to expect, will check with onc of course and take numbers etc but I am a tad nervous but I will only do what I'm capable of .
So glad your rallying you've had a tough Initiation into chemo land Chris take care xxx KC xxx
well back in to the land of the living, god been a tough few days, still not 100%, but getting there.
Hope everyone ok in chemo land and looking forward to Christmas
I have 2nd Fec on the 17th so hoping I will be ok for Christmas Day.
KC I said yours the same day?
Lisa hope your cold goes soon
sending hugs 💕💕
Lisa, please tell your team about cold before next chemo 👍 just keep safe during chemo, sorry to be clucky mother hen but you have to be super careful please during chemo ❤️💕💕✨✨Shi xx
❤️Oral thrush is common and will need fluconzole from your team 👍 please ring your rapid response and get tablets 😘keep safe, if you’ve not already got something from your team 💕💕✨✨Shi xx
Ha ha, love it Helen. I would totally agree with all those scenarios...
And poor you Debs, oral thrush oean't sound great...😔
Arm pain could be from injectiond, I got leg pain from mine...
Oral thrush sounds **bleep**ty.. Our poor little bodies are being put through the wringer...
Is the arm pain from the filstragram injection.. As my lower legs were twingey?
Just had a chat with my friend about 'on the bright side, you could be.....'
We got as far as...
Stuck in a lift with Nigel and Boris...
At a never ending Coldplay concert...
On a date with Prince Andrew...
I realise these are personal to me and some of you may enjoy these.....
Hello beautiful bald and nearly bald ladies.💕
I'm loving all the photos and chat.
My worst side effects were def the woozy head and heartburn and water tasting like chalk and that nausea in the pit of my gut...more? Ha ha
I drove my daughter to work today and was very excited. 1st day this cycle I have felt safe behind the wheel...
Def feeling brighter this week and wooziness gone.
I def was feeling a bit nervous before my 2nd one Helen and Lisa as I knew what was going to happen but now I know everything was just that little bit more bearable and you know there is some good days in between..😊😊
Lots of hugs xx
I ended up having to get extra meds as I’ve got oral thrush and a bugger of a sore throat today, also feel like I’m not really here and painful arms as if I’ve had injections.
Yes.. Your mouth being stripped of its lining so it feels rough.. That does get better again. I am sure that is why food tastes strange, that it must affect your taste receptors on your tongue! I need to look it up as I actually do research on stuff like that in my day job!
Yes.. And feeling trippy... I described it to someone as feeling a bit alien in your own body.
I always feel trepidation in advance.. then I just crack on with it.. Just waiting to wake up from this weird breast cancer dream 😂
Worst side effect = nausea, which floored me on a few days.
Second infusion this Thursday for me and I don’t feel ready either, although at least I know what to expect this time.
I am coming down with a cold today, despite hiding away, I’m all snot and sore throat. Temperature is ok though - small mercies 😊
Hope everyone is doing ok x
Hi Helen , I'm with you top of the list constipation , 2nd heartburn and feeling totally off kilter, wooshy spaced out . Tonight the roof of my mouth feels strange rough not smooth however not painful and boy have I slept today !!! Mind you my nan always said sleep was the best medicine .
Helen I'm sure all will be ok Friday at least you know what to expect and others have said 2nd time wasnt as bad so keeping fingers crossed for you , enjoy your next few days of freedom but you will be rallying round soon xxx KC
Looking beautiful Flou! We need to all go to a Star Trek convention 😂
Hope Chris and KC are getting better ❤️
I am going for my second shot on Friday and am already feeling reluctant.
I am currently enjoying the simple pleasures in life such as tasting food, sleeping, pooing and having a working short term memory!! Seems a shame to lose these again in a few days.
What is everyone's most annoying side effect?
For me it is a toss up between weird tastes and constipation....