It’s good to know you turned a corner on day 10 LB2. Are you on the filgrastim too?. I think the jabs contribute to the joint pain and fatigue.
Thank you for posting WelshJ and Anne67 and joining the chat . We all learn from each other and I for one value your input.😊 Knowledge is power.
I have had joint pains and my bloods will now be low (days 7-14) and the last two days, I have dragged myself out of my bed. It’s been hard, but the hardest part was finding the oomph to get out of bed! Once I had got over this hurdle I went for an hour’s walk. It did my mind and body the world of good to get out in nature and see the early signs of Spring and i definitely had more energy upon my return. However, the weather has been lovely here the last couple of days and that makes a difference.Worth a shot if you can...
good luck Sunnydaze xx
Welcome to the chat. Bone pain on day 3,4,5 was my main symptom after first docetaxol too. I found paracetamol and ibuprofen took the edge off. My tastebuds are off as well, lots of sweet chilli sauce on my meals but still have good appetite. I had some insomnia but just one night, I put this down to the steroids and the bone pain kicking in, should have got on to the painkillers sooner I think. Everyone suggests getting out for a daily walk but I couldn't manage it. With the bone pain I just wanted to stay inside under a blanket and keep warm.
Hope things improve for you soon, I seem to turn a corner on Day 10 x
Hi everyone, new to this thread, was diagnosed on the 5th October with 55mm grade 2 multiple invasive ductal carcinoma & LCIS on the left side. Had a mastectomy with reconstruction & a wire guided incision on the 16th Nov. Started EC chemo on the 3rd January & last Thursday 7th March had my first round of Docotaxel. Was ok at first but by Sunday was having a lot of bone pain,which I was warned about but combined with insomnia, no appetite & lethargy I have stayed in bed , wondering if anyone else has experienced similar, thanks xx
Hi all , haven't posted since week 2 of chemo as I wanted to see how it all panned out although been reading everyone's posts daily. We are all so different and some of you bless you have and are having such a hard time of things. I am on weekly taxol for 12 weeks and herceptin every 3 weeks, also radiotherapy. I have just completed week 10, 2 more to go. I have a picc line which has been a little troublesome in giving blood so they put some drain cleaner in it this week which had to stay in for an hour but has worked. Yea !! I have been cold capping throughout which is gruelling and adds lots of extra time to your treatment but I'm pleased to say so far so good I still have a head of hair. I only gently wash it once a week after chemo day. Like all of you say the first 15 minutes are the worst then it's pretty numb. I keep a weekly journal of symptoms and side effects and a sort of pattern emerging to tell me the good days. I have had various side effects , slight nausea, diarrhoea , constipation , sleeplessness and of late really tired probably due to coming to the end of treatment. But in reality it has not been as bad as I feared thank god. Now starting to have the planning appointments for radiotherapy. Feels like this will all never end. Thinking of you all on our journeys. Sending love and hugs to all of you, who feel like my friends. The support and information you all share is so honest and helpful.
Im now day 14 of T and like you, I am so far preferring it to FEC even though I have had quite a few se’s. My aches and pains started to get a bit easier yesterday although I am still taking fairly regular pain relief. My nose started to bleed, day 11, not pouring just on wiping. It was like that for 3 days. I also started to get a spotty face/rash around this time but seems a bit better today. The worst thing at the moment is my taste buds. Everything salty/sweet/slimy yuk! I’ve got to say, all this is preferable to FEC. Hated the spaced out feeling that gave me. Hope your sore throat and thrush clear up soon. It’s good that you’re not neutropenic.
Take care xx
That’s such great news LB. I’m pleased to hear this.👍👍👍 It will give you a wee boost. I hope you do something nice for yourself today to celebrate.
I am now on day 8 of T. I have to say although I was dreading it, I have found it easier than the nausea with FEC. My final FEC3 was hard going. I think the main thing for me with T (and I’ve had to take the Figrastim jabs for the first time with T, this time, 10 days worth) is the joint pains and fatigue. I have got the joint pains under reasonable control though with Dihydrocodeine and a paracetamol combo. It’s working well, but I have been much more tired this time, possibly the cumulative effects? Not sure. My taste buds have also gone a bit arye, not in a horrendous way, but random foods suddenly taste a bit weird, definitely anything processed tastes odd. Most foods just taste a bite bland. I ended up with a throat infection and thrush on my tongue. I am on antibiotics for throat, it’s under control and not neutropenic I’m on Fluconazole for thrush.
Despite all of these things, T has been easier than FEC, so far. I haven’t been so foggy headed and had more clarity this time round. 4 down 2 to go👍
Thank you for the ladies replying re; a meet up. I might well be able to make a meet up in London or a central location if one is organised at any point. However, at the moment it seems there are a couple of Scottish ladies who would like to meet up. It seems we live fairly close, so I am sure we can sort out an afternoon tea in Glasgow or Edinburgh . At the moment I feel a bit rough, (as we all do, ☹️)but when I’m feeling better I will contact you and be in touch to sort out a wee treat.
Much love and strength to all chemo ladies, we’re getting there, slowly but surely xxx
well i’ve Just had FEC x 4 so halfway through and with the good news that the scans show lots of shrinkage and some gone altogether it makes it all worthwhile.
Hugs to all 🤗🤗🤗
Big hugs, Stuck at 14.❤️❤️❤️ I’m sorry, this must have thrown you into a complete tail spin. At least they’ve picked it up now and can help you deal with it, although it’s not the news you were wanting to hear. We are all thinking about you and sending love and strength. Xxx
Just found out I have braca2 mutation. Does anyone else have this going on too? Anywhere to go for info/forum? Feel back at the start and overwhelmed, not to mention having to tell my mum. 😞
Thank you for this helpful advice too Kip. After reading both your’s and G’s posts, I really do feel rads should be prescribed for me. I will push on this when I next go to the hospital next chemo.
Thankyou for being so helpful and open Kip, means a lot xx
Thank you G,
This is really good sensible advice. I will definitely mow ask a radiologist oncologist to look at my path report and get another opinion. I will also take along my screenshot, as a basis for dialogue, when I see my chemo oncologist. This stuff is really scary and it’s my life.
Good luck with your next round of Chemo G. I had ‘T’ on Wednesday and so far I agree with everyone else, the side effects haven’t properly kicked in yet. My mind is clear, less foggy, but my hips are just beginning to get sore.... I understand your need to lay off social media, but don’t lose contact with us all.
Big hug right back atcha!
Hello ladies, just been reading your posts and thought I would drop in on two fronts:
Sore/tired eyes: I suffered with really watery sore eyes from about FEC No. 3 onwards, cooincided with losing eyelashes too, so I think that didn't help. My nurse said it is a common side effect of chemo and to try to avoid excessive wiping and rubbing. It did carry on until the eyelashes started to grow again, once chemo finished the eyelashes came in quite quickly. Eyedrops are a good idea. but unfortunately it seems another lovely gift from chemo.
Rads: I see some of you are asking about whether you should have Rads or not. My diagnosis was Grade 2 ductal tumour 22mm, with some calcifications around it which totalled 55mm in all, I had 2 lymph nodes affected and 1 with micromet. I had a masectomy (no recon) then 6 x chemo then ANC (no more infected nodes) and then had 15 x radiotherapy. My ONC said that they take into consideration a whole host of things when deciding on treatment, age, tumour, grade etc, and that they wanted do "belts and braces" approach to target everything as being younger you've got more life to live!! I have never been told Stage or Oncotype score (and haven't asked.. too scared). All I know is the radiotherarpy team said to concentrate on the fact that the masectomy got rid of it all, the rest was just a mop up! Definately good idea to go armed with questions and get the facts about the decisions they have made, it can all become confusing when you are in the middle of it all. If you do need Rads, I found it so much easier than chemo, tiring going every day but in and out and home again without the dread of sickness, hair loss etc.. just some lovely tattoo dots and a bit of sunburn. Not sure if this helps anyone but just thought I'd add my story.
Hi Sunnydaze, massive hug. I do feel somewhat better about the plan now I have had the chance to get my head round it. I can however imagine your anxiety is heightened around this even more now. When you see your onc next you definitely need to be asking for your pathology to be reviewed for rads benefit. I would take in your screenshot regardless of it being American research and go through it with them, good basis at least for a factual discussion. I will probably go quiet here for a while as chemo time and I tend to shy away for a good week plus on social media type things. Thinking of you, G
Hi MaMa JuJu
Strained that’s exactly how they felt. I wanted to pop them out - give them a little rub better and pop them back in.
Hope the eye drops work and all goes ok with the onc tomorrow.
Well I am not expecting too much as you never know how you will react, it’s going back into the unknown side effect wise!
All will be revealed tomorrow mind you!
I hope you are doing ok.
Thanks very much kc72. I did mention to the oncologist and I will be getting eye drops in my goody bag tomorrow, fingers crossed it helps. I haven’t been wearing any make up so definiteky can’t blame it on that.
I feel as though they are strained. Did you get that too?
When I spoke to the oncologist I mentioned a sore head and then he got me concerned as he was talking about having a CT Scan. I do think it is tired eyes but it’s got me a little worried just in case there is something wrong!
I am hoping the eyes drops help 🤞🏻!
i have been getting a bit twitched about not having rads and I couldn’t find out much info on the need for rads after mastectomy. I too was grade 3 with high grade DCIS. My tumour size was mixed in in with the DCIS at4.3 Cm and also my path report said “provable lymphatic and vascular invasion”. I had 3 nodes removed only 1 had a micromet the others were clearbut no rads. I don’t see how this can be right. The above outlines the guidelines for radscafter mastectomy. It’s American guideline though. Your story has made me want to push even more for rads. Good luck with your research
Aww thanks sunnydaze, I know you are right in my heart of hearts, I am now googling rads like a demon as have ignored all of this side! I hope you get a good discussion when the time comes too xx
i can’t help you with time scales for rads, it is a bit of a bummer for you, but like you said you need to throw everything atvthos disease
your situation is similar to mine in size and grade I think, but I haven’t been offered rads, but when I see my onc at the end of my treatment I am going to ask about rads. I am in a gray area, I think, but want s good explanation if told no.
Good luck. It’s a shame when you have booked a holiday.
Hi MaMa JuJu
I’m in Dec thread. After my third EC my eyes were really sore/tired, and constantly streaming. I used over the counter eye drops from Boots (moisturising) and stopped wearing eye make up and that did the trick and really helped. After my fourth EC not had tired eyes.
Hope that helps x
Thank you That’s brilliant Neecy❤️ so far we have yourself, me, Stuck at 14 and Dikat showing interest I think. Oh and I have just seen Mamajuju is interested too. That’s great! 😊 When we have final numbers we could suggest a location given where everyone geographically lives and where everyone fancies! I put Edinburgh as a starter because it’s a lovely place to visit, but happy to go with the majority.
That’s brilliant Neecy❤️ so far we have yourself, me, Stuck at 14 and Dikat showing interest I think. When we have final numbers we could suggest a location given where everyone geographically lives and where everyone fancies! I put Edinburgh as a starter because it’s a lovely place to visit, but happy to go with the majority.
Hi MaMa JuJu, I have tired eyes, using some drops I got over the counter just to refresh eyes whenever I feel like it.
Hi Everyone, Question, I am on my 4th EC tomorrow then move on to to
docetaxel for the next 4 cycles. I was told yesterday however I will need rads once chemo finished after all. Myself, breast surgeon and onc always presumed this was unlikely due to having had a mastectomy after lumpectomy uncovered more cancer, however, consultant reviewed and due to it being an aggressive invasive cancer (grade 3) and having lots of intermediate grade non-invasive too, I am at high risk of it coming back. They want to ensure any remaining cells in my chest wall and skin are targeted, anyone else got to have rads after chemo & mastectomy or do u not need this??
My oncotype DX results originally came back as high for distance recurrence hence having the chemo, which we were all hoping I wouldn’t need but obviously, like u guys, I got my head around and started this journey. I am feeling really low and disappointed as I thought this would all be over at end of chemo (obviously recon, currently have tissue expander (not sure what rads impact will be here) and 10 years of tamoxifen still to go but I had hoped the most brutal side would be completed) 😕
Also practically I’m worrying about how long after chemo can start rads (question i will ask when meet consultant) as have sunshine holiday booked and not sure now wether this will mean I can’t go due to timing or how long you have to wait to go on a plane etc....
Big hug you amazing ladies, G x
Yes when my oncologist mentioned it to me she said it would be weekly - but much more gentle than T. She said we’ll discuss all the details at our next meeting. I have done a little research and I read that it can be given weekly for 3 weeks then a week off for around 12 weeks but as yet I don’t know all the details. Another adventure eh 😀
Has anyone suffered from tired eyes? I feel as though I need to clear them all the time.
Thanks for the info on the oils, I have now ordered both and they come tomorrow.
I hope your treatment went well.
Take care xxx
i saw my oncologist today o day as I was getting my bloods for tomorrow’s cycle. He never mentioned about getting it weekly and I didn’t think to ask. I shall see how tomorrow’s treatment goes and take it from there.
Are you going to be getting it weekly if the oncologist decides that’s the drug for you?
i would definiteky be interested.
Lucky for me I live in Scotland too in a place called Larkhall so only about an hour from Edinburgh.
That’s great Stuck at 14. Thanks for the reply . Let’s see if any one else is interested and take . We do deserve a nice treat. Let’s see where people live and take it from there ❤️👍
Sunnydaze I think that is a lovely idea! I'm in Derbyshire, happy to see where others are and what works best- we deserve some things to look forward to xxx
Abraxane has been mentioned to me as being the option after FEC x4 next week - are you having it every week instead of 3 weekly cycles?
Hugs to all 🤗x
i hope you are all well. I just thought I would throw this out here this morning to see if you are interested in a meet up at all? I am going to ask the December ladies too, because I hop across both threads. I know others have met up before when they have finished their treatments and had a lovely time together 😊 I live near Edinburgh and would be happy to sort out 1 nights accomodation in a hotel or apartment of anyone fancies a wee trip to Scotland, Edinburgh is beautiful or alternatively I am happy to travel and find a central location that suits everyone. I guess I was thinking early autumn time. We could have an afternoon tea, and or a lovely evening meal, a few drinks and a bit of fun.
let me know if you are provisionally interested , by adding to this thread, giving me your avatar name and true location and then we can sort out the details via private message.
hope you can make it.👍👍👍👍❤️😍 Sunnydaze xxx
Hi Mama Juju
i bought a small bottle of almond carrier oil and 100% rosemary oil from Holland and Barrat, it was on half price sale and I paid less than a fiver for both! I really like it, although it smells a bit pungent to our sensitive chemo noses. Lorraine1 also told me to turn my head upside down and massage for 2-3 mins and help the blood flow. My hair is definitely growing. I’ve been massaging it into my eyebrows too, hoping I don’t lose them. I also take a complex B tablet from Holland and Barrat it contains Bio ntin and my Onc told me it was safe to take. I will take a full Biotin tablet when I have finished treatment. All of these things (if you google) are good for promoting hair growth
Good luck with your next taxol. If I don’t do well on T they are going to shift me on to a taxol, given my foot pains.
i just thought I would say a wee hello as I have not been on much after cycle 3.
@Sunnydaze, I have been feeling much the same as you for FEC3, it’s certainly been a tough one but I am always reminding myself that I am now more than half way there. My next drug is called Abraxane and not Decetaxol but it is part of the Taxol family. Lucky for me I won’t be getting the steroids, so that is a blessing in disguise. I took a really bad reaction to the small dose of steroids so they have decided to change it. I also had sore soles of my feet and went right up my calves. Plus this time round I have had numbness and tingling above my left knee which is a very strange feeling. Wishing you all the best for tomorrow, I get my 4th cycle on Friday. Another one ticked off the list.
Can someone please remind me where you buy the Rosemary and Almond Carrier Oil for hair growth? Or do I need to buy the two individually and mix them?
@Kip, thanks for your good advice as always. You have been a great help to everyone in this group.
@Everyone else, you are all doing amazing. We are definitely warriors and have come through the toughest of times. Keep going, we are all nearly there.
As always, sending lots of love to you all. Xxxxx
I would not have a picc line again given what happened to me as I posted below and ending up with a blood clot from elbow to shoulder. If you have to have a line in then go for a port, the line at least drains into a larger vein in your body. X
Sorry to hear of your vein problems Stuck at 14. Don’t panic over having a pic line. I had mine fitted in December before my 1st chemo and it has been a godsend. I was worried about it beforehand, but they gave me a local anaesthetic and I felt no pain at all. I’m having 5th chemo on Thursday and it has been used for everything,all blood tests etc. Apart from having it flushed and cleaned once a week it has given no problems at all. Once it’s in place your not really aware of it,just need a sleeve to hold the end in place so it doesn’t get caught. The hospital ones I found were either too big or too small, so pinched a pair of my sons football socks, cut off top and bottom and it works a treat. Good luck, it really will make life easier.
Thats great news regarding shrinkage of your tumour LB. That must have given you a good lift. Giving that bad ass cancer a run for its money. 💪💪💪
Im sorry you’re feeling rough Stuck at 14, if it’s any consolation I felt really low during cycle3 too. I wasn’t able to exercise so much due to sore feet (muscular pain) and I have done a fair bit of comfort eating, too much chocolate !!! I am putting on weight and unhappy about that. I hope you feel a bit better soon, it’s horrible feeling low, but we have better days too 😊 . I hope you get your arm sorted. My arm has been sore and Voltarol has definitely helped, but not looking forward to chemo4 ‘tomorrow T’ and my poor veins.Im quite nervous about it all. I have found it really helpful reading about all of the se’s from the December ladies.
Good luck to all.
Hi Stuckat14 thankyou 🤗 My arm has been very sore the last couple of weeks - I have had 3 FEC - it’s the e part which damages the veins. My nurse said it’s ok to use volterol. That deals with the ache but I guess it doesn’t help with the access to your veins for infusion. So far they have been able to use mine ok 🤞 I have FEC x4 next week 🤞 🤗
Such good MRI news lb.
Can I ask about veins/picc lines? I had last ec on Friday and they couldn't get it in my right arm so had to have it in my bad arm- I wasn't going to leave without it. On now booked in for a picc line but honestly dont think I can go through with it. Why cant my veins recover? I thought docetaxel was less harsh on veins. Why does it have to be my hand? Maybe i need to ask them more questions but I'm interested to hear your experiences. Really struggling with sickness after this one- and my mood, good to know I'm not alone though. Hugs xxx
Hooray I had some good news today - I had a MRI and the oncologist brought up some of the images to compare with the one before starting chemo - they still have to be reviewed by the experts but as far as she - and I - could see there was a marked decrease in the size of the tumour and in the lymph glands that are affected. Fingers crossed 🤞 x🤗
Talking of arm pain I had a trip to hospital last Monday to remove my picc line due to a clot that had built up. Apparently it is a risk with a picc line especially as chemo makes our blood a bit more sticky. Jeez I was healthy before I began (!) and now I'm injecting blood thinner into my tummy every day at least until I finish chemo and the clot has dispersed. Plus I'm on tramadol as the pain is terrible - way worse than my W/E and lymph node clearance. I had not been having too bad a time of it with the chemo, only arm pain from the second EC and now I'll have to go back to cannula for my 4th and final EC and the following 4 paclitaxels. I'm just hoping paclitaxel is gentler on the veins than epirubicin. :((((
For any cold cappers - how are you getting on? I'm still going. I'm thinner all over but full covering and bizarrely my hair has grown as I have a inch of roots. Sunnydaze I'm so glad to hear the rosemary and almond oil helps, keep massaging with your head upside down for 3-4 mins each day, it will increase circulation to the follicles.
Good luck to anyone approaching EC4 (mine's next Tuesday). Anyone else going on to paclitaxel? XXX
Yes, Thank you for this useful information regarding T and it’s side effects. It’s so tough trying to deal with all of this, it pulls you down mentally doesn’t it. I guess we’ve no other option other than digging deep and getting on with it.
It feels so unfair sometimes. Yes, this thread gives you comfort, but I often think why us??? What have we done to deserve this???
Thankyou Kip it’s good to know some of the side effects and to be prepared.
Hugs to all 🤗 we’re either halfway or nearly halfway we can do this xx
Hi ladies, just thought id add a bit about my experience with ghe T part of chemo. I had 3 x FEC then 3 x Docetaxol (T). Compared to the FEc part i didnt get sickness but wss given anti sickness pills in case. In general it was the mouth issues that were worst. First cycle i got really bad oral thrush and ulcers which j think i left too long before getting treatment. I eventually got flucozanole pills and a liquiid to putnon my tongue and also had a stay in hospital for neutropenea. After that cycle i msde sure j got the flucozanole with my chemo bag each time and took them as soon as tongue began to tingle and it definitely didnt get so bad from then on. Also i would gargle with salt water every couple of hours just to keep on top of it. The other thing was numb tingly thumb which is a sign of neuropathy so watch for that and let onc know itnit happens and they can adjust the chemo next time. Once chemo fjnished thumb was fine. Nails bexame brittlebtoo but overall the T came with slightly different SEs but again manageable just rjng that hotline if you need to.
Thank you for taking the time to reply and for such helpful information. 👍
I have been a bit rubbish on FEC, so am dreading T, but gonna keep as positive as I can.🤞
At the very least, it will be one more cycle ✅ ticked off.
Hi, I've popped over from the December thread. I have had 3 FEC and had my first Taxotere 10 days ago. I was really dreading the side effects of the T, I had been OK with FEC apart from 2 days of no brain and no energy. I was waiting for the 'run over by a bus' feeling, but with T I had aching of lots of joints days 4-8. Yes, I needed painkillers, and yes, it got me down - not because it was unbearably painful, but because it just kept going. If it wasn't my hips, it was my knees, or my ankles or my heels (heels??? how does that happen?). But I have to say I have been in much worse pain when I have had flu. The thing with flu is you know it's going to be over in a day or so, whereas with this it just feels much more open-ended as to when it's going to stop. Definitely had more brain than when on FEC. So, all the best for those of you switching over to taxotere and hope it goes well
It pleases me knowing that the Voltarol is working for you too😊. I’m glad your nurse gave it the thumbs up too. I too was quite surprised at how quickly it started to work. You sounded reassured from your chat with your lovely BCN, you are lucky that she is so supportive. I’m glad you slept well too, it makes everything more bearable if you’ve had a good sleep.
I hope your meeting goes well with your Onc next week.
Yes, we are half way through (or almost half way through) this heartbreaking journey and that definitely deserved a few thumbs up 👍👍👍👍. Enjoy the weekend everyone .