Hope your chemo went okay yesterday and that you soon start to feel more back to normal. I’m on a different regime to you, I have one more EC, then I start 12 weeks of paxitacil, which sounds like a weedkiller! I’m still getting used to wearing my wigs, I bought a second one online, one is a grey bob and the other short and blonde. I think I’m much more aware of it then anyone else is, so I will just have to get over myself😕.
I had terrible acid reflux after chemo and my GP gave me a prescription for Omeprazole. She told me to take one tablet a day for the duration of chemo and it's been fantastic. Might be worth giving your GP a call.
How many cycles of EC are you having before your op? Good luck with everything.
Hope the antisickness medication works better for you this time and that you soon start to feel better after this round. 🌞
I haven't been on for a while as I struggled after my 2nd EC too. I had awful acid reflux which has now thankfully gone, I had a couple of really down days but they may have been COVID related and now I'm back to feeling ok. So I would say 10 days to feeling better for me.
I too am having mastectomy after EC as I had 2 failed lumpectomies in July & August. Its daunting to think there is more after all of this isn't it. Very rough going.
Whereabouts in France are you? I'm on the edge of the Pennines in Yorkshire so its starting to get cold now!
Hi All, I can’t believe it’s been 5 weeks since my last (and first post). Time goes so fast with each Monday as chemo day, then working the other 4 days from home, trying to go for walks, cook meals etc.
I’m sorry to hear that some of you have not been having a great time. But I also find it interesting that the side effects differ so much from person to person. Also interesting is how many different treatment plans there are out there with so many variables in diagnosis etc! I guess we have to look at the end game, however far down the road it is for each one of us. My regime is a long one as I am Triple Negative so I don’t have the option of injections/tablets after treatment. 12 weeks of Paclitaxel and Carboplatin, followed by 4 x EC cycles which takes me to mid Feb. Then surgery then radio.
It makes me nervous to hear the not so good reports of those of you on EC. I just had week 7 of weekly Paclitaxol and 3rd of 4 Carboplatin. So far so good. I’m getting a bit slower with the walks and get a rash every now and then which I’ve got cream and tablets for. The cold cap seems to be working up to a point, but my hair is now very thin and I wonder if it can hold on once I start on EC. Time will tell and I have a wig on standby just in case. Also wondering if when I start the EC will be the time to call it a day with work for a while. I guess I'll just wait and see how I feel at the time. Work are putting no pressure on me, I just like the normality of carrying on while I can.
I’m loving the suggestion of watching Christmas! Think I will make a list on Netflix for the weekend.
I hope those of you going for treatments in the next few days get on OK and the side effects are manageable.
Take care everyone.
Hi everyone thanks for your support. Feeling ok again. Will definitely tell the unit that the antinausea drugs didn't work this time.
York 75 I hope your scalp irritation calms down soon, must be very unpleasant. I've lost most of my hair. I bought a kind of cap from masumi headwear, they are really soft and comfortable and have space in the top so they don't touch the scalp. The cap collects the ones hairs still falling out. I like headscarves, I drape them round the cap. I love the photo of you and your gorgeous little girl.
Linflo my tumour is HER2 positive too. I have some cancer in my lymph nodes as well. I still get strange sensations despite the chemo. It is the thing that worries me the most. Did you recover quickly after the mastectomy ? I still have one round of EC then move onto three rounds of docetaxel before surgery. Then I will be on the HER2 drugs for a year. And hormone therapy as well. It seems crazy i felt so healthy and well before i found the lump.
Karen19 i had a picc line put in before I started chemo. I had to wait a week for the scar to heal before starting chemo, but now when they put the needle in i don't feel anything or have any reactions. Hope it goes well for you. I love your attitude about enjoying the time when we feel ok and focusing on getting better.
Big hugs to everyone.
I'm sorry to hear you are having such a rough time. Must be especially tough with young children too.
I had my op first and it wasn't nearly as bad as I feared. It was day surgery and I had no pain from the wound. The exercises get easier every day and are essential.
Good luck with the scan next week.
Hi Carmen and Karen19
I have seen my oncologist this morning and it seems I was given the wrong antiemetics after my last chemo so he is prescribing me something beginning with Z which you take 3 times a day no break between treatment so hopefully I won’t feel as bad tomorrow.
I had my picc line fitted this Monday, the procedure was straightforward with no pain just a strange feeling in my armpit at one point but nothing to worry about. After the local had worn off, my arm hurt where the line goes in so I have taken paracetamol for a couple of days but it feels much better today.
It sounds like we are all having lots of ups and downs. It helps so much to keep an eye on the end goal of being cancer free and a clean bill of health going forward 🥳
I spent the weekend doing lovely things, eating nice food, long walks, couple of glasses of Prosecco and of course, a few Christmas movies 😂, but then Monday was another story...
My hair had been shedding for a few days and I decided to wash it and horror upon horror, it became so matted in a solid clump on the top of my head and could do nothing to get the matted hairs out. Cut a long story short, my lovely mum came over and spent 3 hours trying to tease the hairs out of what looked like a bird’s nest. 50% of my hair came out on the crown of my head and I now look like Gollum in The Hobbit!!!!
As if that wasn’t enough, I then had a call with my Oncologist who postponed my next cycle by a week due to the aches in my arm and now have to have a Picc line on Monday. I noticed that you have had one put in SU. How are you finding it?
Onwards and upwards, just ordered my wig and going to have a big slice of carrot cake and long stroll with my other half to compensate for a tough few days 🥰
It’s horrible knowing that you are going to feel pretty rubbish again after starting to feel better. I suppose trying to think that feeling ill won’t last too long has helped me cope, and that each dose is destroying more cancer cells. But sometimes it does feel so unfair.
Good luck for Thursday. 🌞
I’m so sorry to hear you have been feeling so poorly , UmLydia. That sounds really tough. Like Shi says, hopefully if you talk to your unit about it, they can help adjust your antiemetics so you don’t have to suffer like that next time. Sending hugs!
I have also found cycle 2 harder than the first, although nowhere near as bad as you. Just more tired and dizzy, spaced out. My hair is coming out so fast, if I leave my hair uncovered I look like I have just been to the hairdresser, covered in itchy little hairs. If I put a wig or hat on, my scalp feels so itchy sore. I also have rashes and itching anyway, my unit says I can take antihistamines, which helps a bit.
In case anyone else is suffering with similar things, so far I have found Cetraben Emmolient bath additive helpful with the itching, also slathering it on my scalp when wet and rinsing off has calmed down the redness and soreness. Also if I arrange a cotton scarf over my head and then round my neck, it covers my head without pressing on it, and the part round my neck stops little itchy hairs from falling down my top!
Otherwise I’m looking forward to joining the Christmas movie gang- it will be a treat to watch some without anyone rolling their eyes at me! 😆😆
Umlydia ❤️ Please ring your team and let them know your antisickness meds didn’t work as well this round, your onc will be able to tweak your meds to help with this ❤️💕💕✨✨Shi xx
Really sorry that you are feeling so bad, it must be awful. I’ve had 2 rounds of EC, my third is on Thursday. Luckily no severe side effects, and after 7 days almost feel ‘normal’.
its funny how treatment differs. My lump was 6.5cm, & I had a mastectomy within a couple of weeks. Felt better that it was gone. The chemo is a backup. Mine was HER+, so will be having herceptin with my 4th cycle onwards.
i do hope you feel better, take care xx
I had my second EC on Friday and it was horrible, much worse than the first time. I arrived home at 2 pm and was sick throwing up non stop until about 9 am next morning. I couldn't even hold down water or the pills to feel better.
After that I was just exhausted and luckily slept a lot. The kids were great, but its awful being in lockdown because ideally they would have gone to play with friends or have a sleep over so they didn't have to see me in such a state.
I will have a scan in 10 days to see if it is working. I don't think the lump feels different. Its a big lump 6cm. If they think it isn't working they will skip EC and change to the drug that targets HER2.
Will force myself out today. Luckily kids school is just round the corner. Lock down and chemo is certainly a big challenge for morale. Kids in France are wearing compulsory face masks from age six all day at school. I was feeling so upset at that I was actually looking forward to this EC to have no energy to think. Certainly worked. Need to try to get into deep breathing.
Does anyone else have a mastectomy to look forward to at the end of chemotherapy ? Its rough going.
Chemo 2 may not be as bad as you fear. Worst thing for me with chemo 1 was the acid reflux but my GP gave me a prescription for omeprazole and no problem since. Speak to your chemo nurse about getting meds to help you - are you due to speak to her before Thursday? A neighbour said to me that the first one is the worst and then after that your body is better at dealing with it. Well done on having your Picc line fitted - the thought of having one makes me feel positively queasy.
I think it's natural to have days when you feel a bit down or scared - the whole experience is pretty overwhelming but it will eventually be over and we can get on with our lives again. I've booked a holiday with a bunch of biker friends next September touring Somerset, Devon and Cornwall - something to look forward to and help me get through the crappy days.
I think you need a prescription for some trashy Christmas movies - one a day with a comforting drink on a cosy sofa. 😊🎄😊
I had my Picc line fitted this morning, I was a bit anxious but all went well and I know it will be better than being poked at to try and find a vein o. Thursday for chemo round 2.
I have been ok through the process so far but the last few days, I have stated to feel a bit down and anxious. I’m not looking forward to Thursday as it means I will feel ill again and I have enjoyed feeling normalish this last week. I even thought about not having any further treatment because this cycle of feeling ok and rubbish it what I get for the next few months. I know that’s a silly thought and I will carry on. But how do you get through it? It’s just so hard at the minute.
I've got my 3rd chemo on Thursday too. I had a really sore throat last week with white spots at the back of my throat. My oncology nurse sent me a prescription for more fluconazole and that did sort it out.
Karen-19 Glad I'm not the only person watching those Christmas movies - there's a whole channel devoted to them! Who knew.
I'm currently making marmalade and then I'm going to make strawberry jam while I have the energy. I have a huge allotment and three freezers full of soft fruits so I need to do something with them.
Hope everyone had a good weekend and is keeping well. xx
oooh love the sound of Christmas films, especially with my chemo head ( having difficulties in memory etc). I am such a fan of Christmas, I’m currently making my own Christmas cards as I have energy, but after my next session (Thursday) I’ll have to wait until my energy levels come back. I’ve planned for wrapping presents and Xmas decorations when my energy levels are back.
Is anyone getting nasty spots, I got pesky white heads on my “hairline” on my neck and on my throat, plus a mouth ulcer, which I must tell my oncology nurse about.
Good luck everyone 💪💪💕💕
I hope your next chemo goes okay. I felt better after the 2nd round weirdly, and not too bad with the 3rd dose, just lacking energy and not sleeping too well. And the thought of all those tablets, before food, with food, once a day, 3 times a day etc. is daunting.
Keep on rocking your wigs and headgear, I bet you look great. X
I'm glad you like your wig, I'm still getting used to mine. I don't know how all the bald men manage because my head sometimes gets quite cold when I don't wear anything. I'm feeling almost back to normal after my last EC, but as you say, the next one is always on the horizon. And I hate going for my covid test, but there it is.
Wishing you good luck with it all. x
Glad to hear you had a relaxing evening after your treatment York-75. I’ve heard the Queen’s Gambit is good. Have to say that Netflix is a Godsend in lockdown and in the midst of chemotherapy! On the subject of Christmas ChesterBrownBear I’m enjoying trashy American Christmas movies as they always put a smile on my face and are so uplifting! Appreciate that we are 7 weeks away, but as we are living in strange times I think it is allowed 🥳
Mrsquincey that is great news! It all feels a bit easier to bear when you know it working. I’m so pleased for you! 🥳
Mystrose, I am 45 and I had my period not long after my first round of chemo. It was also heavier that normal and lasted a full week, whereas normally it is lighter and lasts 3-5 days. I don’t know if that makes it normal, I didn’t end up asking about it in the end. I hear often during chemo your periods might stop, so I though maybe I won’t have another one? Then after chemo they will put me on tamoxifen which is likely to stop periods as it deprives your body if estrogen.
I was a bit concerned at the time as I had bleeding gums and when I blew my nose there was often blood, so in my mind I was worried about it being more bleeding not related to the period, which was a scary thought, but I figured there was no way to tell until the period had lasted a normal amount of time. In the end it stopped, so I just hoped it was a one-off. The bleeding gums when I brushed my teeth also went away.
I am sorry your mum is suffering so, it is probably worth asking the oncology nurses about it, mine have been very supportive.
Hello everyone! Been a long time since I said anything on here but I was reading all your experiences!
My mom had her second chemo last Wednesday but she started losing hair from last Monday. I bought her a wig but she isn't using it at home she just puts a scarf on her head while at home.
She's aged 46 but still has not had menopause, and right when she started chemo she's having her period and after her second chemo it's very excessive and she's finding it really difficult to move around.
Does anyone have their period during chemo?! And I just wanted to know that if this is normal or something that needs to be worried about!
Had a bit of happy news today. Had to go have my bloods done for my 2nd chemo on Tuesday. Then I had an onocolgist appointment just for a catch up to see how I'm dealing with chemo. So I said how I felt that I couldn't feel my lump anymore or struggling To. The onocolgist had a feel and then asked another Dr to come feel and both can no longer feel my lump. So that's great news and looks like my cancer is reacting to chemo great. Never been so happy to whip my boobs out. Made me so happy.
Finally the weekend. Woohoo
Hi carmen verandah, I’ve just got an nhs subsidised wig which looks great, I had 2 sessions with the cold cap, but after the 2nd my hair came out in chunks. My 3rd session is next Thursday 😬. Horrible thing to look forward to especially as I don’t feel too bad just before. I may shave my head at a no 8, as my hair is an utter mess. Then is the t part, I know I’m a worrier, but it’s hope the side effects are no worse than the fec. Like you I have a week or so of feeling not too bad, so I rush around trying to catch up🤷♂️.
it’s unfortunate that we will be going through this over Christmas, but at least it’s not a normal Christmas, not missing any parties 🙁. Good luck and stay strong 💪💪💕💕
Thank you karen19!
I’m home again and tucked up in the sofa with blankets. 👍🏻
abraxane 2 down, 2 to go,
Herceptin 2 down, 16 to go.
Drinki g lots of water and getting to watch my choice on tv, which never happens. The queens gambit- really enjoying it so far!
I’m doing ok, had 11 rough days after 1st chemo. I am trying to make yo most of these good days without over doing it! Also starting to feel a bit low as round 2 is next Thursday and it’s all going to start again and have this to look forward to for the next few months to come.
I still have all of my number 2 hair style and not lost any other body hair. I have worn my wigs out and bought some head scarfs, headbands and bandanas to dress them up and give myself different looks. At home I wear fluffy bandanas to keep my ears and neck warm.
Thanks for checking in, really appreciated xx
Hi ChesterBrownbear and Strangely Upbeat
I wondered how you are both doing? I’ve been following the September Chemo thread as I started chemo right at the end of September. I’m doing okay after 3 cycles of EC. I’m trying to get used to ‘Jojo’ my NHS subsided wig although I still feel quite self conscious wearing it out so put my hood up or wear a hat with it. As I get lots of short hot flushes now it can get a bit hot and sweaty sometimes. I gave up the cold cap but since getting the wig my hair has stopped shedding, which is weird 🤔. I now have very thin hair, not the best look alas. I feel quite tired and look very pale but I’m doing alright overall, it just seems like a long haul.
I hope things are okay with you both.
I think you turn extra sensitive to anything that you feel is new or out of the normal. I think that is something that will never go away now we have had the terrible C.
The spot was huge tho... Like jesus can't do anything by halves.
I just know ifs gonna be my luck ill loose hair everywhere apart from my legs... I just know it. Doomed with forever fuzzy legs.
My hair is deffo shedding but not a massive amount. I am hoping it stays. But if it doesn't then what can ya do.
I'm glad you all sound happy. X
Glad to hear everyone in such good spirits!
mrsquincey you made me laugh with your spot scare, although I imagine it was rather traumatic at the time!
I have round 2 on Friday, I’m lucky that I have only 4 rounds (but Herceptin for a year, injections) so on Friday I will be halfway through that part. Fingers crossed it will be about the same as last round, as all in all it was not as bad as I expected. 🤞🏻🤞🏻
NAJ it’s good to hear you are pleased with the prosthesis.
Whiters14 and Mrs Quincey it looks like we are the same timeline and I cold capped too. My 2nd treatment is on Tuesday. So far I’ve not lost any hair from anywhere, but presume this is on the horizon. It’s good to know we are a third of the way through next week 🥳
It’s awful the feeling of panic isn’t it.
I too cold capped and hair on head doing okay at the moment no more than usual coming out. Hair elsewhere is another story 😬
My second session is on Tuesday too I’m ready for it bring it on and then we’re a third of the way there!
Hi Mrs Quincey, I’m using the cold cap too, and didn’t loose much hair on my head until the day after my second session, and I was shocked to loose so much for about 3/4 days. I said to my husband it looks like cousin It in the toilet 🤣🤣. No bald patches at the moment so we’ll see after my next session, Thursday next week.
good luck to you all 💪💪💕💕💕
Brow power works well with the stencils and a small hard angled brush and tap and dab 👍 also any this might sound strange but just some cushion stuffing out of a scatter cushion works well in bra for evening up (found softie can give a join line) works great in summer when it’s hot 👍 just wanted to share few tips ❤️💕💕✨✨Shi xx
I haven't tried the eyebrow stencils yet as I still have eyebrows! There was quite a selection in the pack so my daughter picked the one that was most like my natural shape.
Today I was fitted for my prosthesis. It only took about 10 minutes and it's much better than the softie as it has some weight to it. The softie was fine but I did always seem to end up with one higher than the other!
I asked if lockdown would affect my chemo but thankfully it will carry on as planned. Felt a bit selfish about asking but it seemed silly to worry about it unnecessarily.
Hey lovely pink ladies.
Hope chemo and what. It is being kind to you.
I had my 1st EC session 2 weeks ago and got my next one next Tuesday.
All in all I feel OK thought I am having to nap most afternoons.
I had a bit of a panic last week. I found a lump behind my ear. I worried myself sick and didn't tell anyone for a couple of days. My throat was sore so thought it was a lymph node. Then I got myself in such a tizz I started crying to my husband (sobbing with snot and everything) when he looked he was like jesus that's the biggest spot and head I've ever seen. 🥴🥴🥴 So yes I got myself in a tizz over a spot. That had now gone.
I did cold cap and not really losing much hair than what I did before cancer. But jesus my pubic hair is literally dropping out, I haven't had a wax since lockdown so I was beyond shocked. 😅😳 So imma look at it as a good thing as my head hair is staying strong... Fingers crossed.
I wish I was having ec every 2 weeks I feel like I am more that fit enough to have it this week but guess the drs know best.
My lump has deffo shrunk I'm struggling to find it. But where the dcis is I can now see a dip where I had the biopsy and can now feel that lump.
Aw withers14 I am glad the surgeon thinks it is nothing to worry about, and that they could see you quickly. I think heightened anxiety is very normal. I identified my cancer via a ‘dip’ in the breast and nobody could feel a lump at all, but it was there.
I have also been back for an extra check when my breast developed a new ‘dip’ a week after surgery.
I think we are just more vigilant now, which is good, but I’m sure as time passes the panic it brings will lessen. Xx
What lovely photos York 75. Aren’t 6 year olds amazing they are so resilient. I am 2 weeks and one day after my first session and starting to see some hair coming out I am still hoping the cold cap has helped but after seeing everyone’s photos and comments I am thinking of looking into getting a wig.
I have had a real wobble today whilst drying myself after shower I felt what I thought was a lump same side as lumpectomy but near to the bottom of my rib cage. Sent me into a right spin so I phoned my bc nurse. She got me in to see the surgeon this afternoon who had a good check and couldn’t feel anything. I’m now thinking is this going to be me from now on panicking about every little thing 😞 .
So my 6 year old got to cut my hair, and luckily I still have ears!!
She found it fun at first but got a bit upset at the end, saying ‘you don’t look like mummy any more!’
she got over it quite quickly but she prefers me with a wig.
I got another wig free on the nhs today, in addition to the one I bought on the internet, and I think I prefer it!
No idea why the pics are sideways.. AnywAy, the wig shop was a really positive experience and I feel well kitted out now.
Although I now think I might need eyebrow stencils and magnetic eye lashes.. NAJ, were they any good? 😊
Thanks for the advice Shi 😘
NAJ your message made me laugh. I love that you leave your wig on or over the stairs. I have two cats and would inevitably wake up to find them either wearing it or sleeping in it!
I saw the eyebrow stencils online as well and as you said, who would have thought these things even existed before now 😂?
At least there are lots of things for us to try and they keep our spirits up. 👍🏻
A sense of humour is absolutely essential I reckon.
My first chemo the cannula went into the back of my hand and I had a shocking bruise for a couple of weeks. Second chemo the cannula went just below my thumb and slightly above my wrist - no bruise at all. I'm sorry to hear that you have been having pain in your arm.
My blonde wig - which is actually much more flattering than my own hair - was definitely wind tested today by storm Aiden and passed with flying colours. I take it off as soon as I get in the front door and usually hang it on the newel post of the stairs. The other day I left it on the staircase and it definitely looked like roadkill. I opted for the eyebrow stencils (who even knew such things existed). There is this pink thing that clips on the front that you hold as you stencil them on. Looks very reminiscent of the plague doctor mask. 😂
Karen ❤️ You might find one of those microwave heat pads with the wheat in useful on sore arm ❤️Also ask them to put heat pad on your arm when you have next chemo too ❤️💕💕✨✨Shi xx
I love the fact that everyone on here has maintained their sense of humour which really helps when we are going through our treatment.
I've spent a couple of hours on the internet this afternoon searching for bit and bobs which will either make me look or feel better. Aside from the usual headwear, I have purchased magnetic eyelashes and stick on eyebrows! Apparently the eyebrows last a number of days, so just hoping that I get them in the right place and not upside down 😂
Has anyone else developed a dull ache in the arm where they had their treatment through a canula? My hospital said to keep an eye on it, but just wondered whether this is common and my vein is simply sore from overuse!
Linda I have a dark sense of humour too. Yesterday for halloween I was pulling my own hair out. I found it hilarious but nobody else did. Its getting very thin like an old lady's but luckily no bald spots. I have droopy boobs after 9 years of breastfeeding (3 for each child) - in the near future to be just one droopy boob. At least they have been put to good use.
I have some lovely headwear and I think it suits me so quite looking forward to wearing it.
But I don't really care about my hair, I worry the lump. I will have another chemo session before having an ecography to see if chemo is working. Some days I think it seems to have shrunk but yesterday it was aching!!! Horrible.
I am counting the days until the next chemo because I imagine all the cancer cells dying.
Good luck to everyone with second session. At least we know what to expect this time.
Your message made me smile on the no body hair!
My hair started coming out 2 weeks to the day of 1st chemo but I had short hair anyhow but went for head shave (as it was so sore) and various colour combinations of the turbans/scarves.
I had a wig but because we went into lockdown, never really had occasion to wear it so I've donated it now to the wigbank.
I finished chemo back in June (I was a Feb 2020 starter).
Yep I lost body hair everywhere from the top to the bottom and yep I now have it back and more!!!! The hairy arms coming back I could quite happily have done without but I do look at it as a sign that after the trauma of chemo, slowly my body is coming back to some normality - quite a novelty shaving legs again!
Wishing you well on your journey. xx
i am now just over a week in from my second chemo. Like last time, I started to feel better on day 8, I can cope with the few ‘yukky’ days knowing they will pass. The biggest shock was my hair, within 4 weeks of staring chemo I had to shave it off. It was literally falling out in handfuls. I had long thick hair, & expected to hold on to it for a while longer. I have a lovely wig but indoors I wear a nice turban style headgear. It was cheap from EBay but looks much better than being bald. My daughter bought me a fringe on a headband, & I feel much better wearing these. I think it’s important to still feel good about yourself. If I was younger I think I would feel better about being bald, but I’m 62 & it does not flatter me. The bonus is no more body hair though! I assume as my chemo runs through to January that I will be hairless until at least then. I do have a laugh & a joke with my family & friends about how I look - bald & one droopy boob! I went for a walk yesterday & did notice that the inclines seemed a bit tougher than the previous week, but still manageable. I am keeping a diary of how I’m feeling daily to compare with previous cycles. It reminds me what is ‘normal’ for me.
❤️ Linda xx
Always phone your units and check any symptoms of anything ❤️Always just to keep safe during chemo, please don’t get complacent always ring them to check even with no temperature, especially if your wee starts to burn like cystitis or if the chemo gives you thrush mouth or down below, antibiotics will be needed ❤️ Keep safe 💕💕✨✨Shi xx
I have been ok doing the injections but not too keen on the sharp spike, my mum has sent me some cream to numb the area so I will be using that next time.
I have had cold/flu like symptoms and have phone the hospital a couple of times as things have change but they have said they are part of the side effects. Make sure you have some paracetamol in just in case xx