Hope you are all keeping well.
Just saw oncologist consultant today and he has said that i will need radiotherapy after surgery and maybe more chemo depending on histology results Is this a normal regime ???
Its really upset me as i just was hoping to get to the end of this nightmare by September as my daughter is starting university . I just feel that every time there is another mountain to climb. Even though the logical part says they know what treatment is required .
On a positive note my bloods have now recovered so i can start the EC treatment on wednesday.
How are you all feeling today ?
Ive had a bit of a rough week as unable to have chemo on Wednesday as my white blood cells were too low. They had gone from being too high for treatment last week. Got to go on monday for bloods and to see oncologist for hopefully EC to start on Wednesday. Must admit im feeling nervous starting a new regime. I just cant wait to get through to the end of the Chemo like us all no doubt.
My throat felt a lot easier yesterday so im hoping thats one Side effect that doesnt return .
Love Daisy xxx
Thanks Thomaschix - hope you feel better soon. It's easy enough to give advice - we're not usually so good at taking our own. I know I should probably have asked for help sooner but I was hoping it would pass quickly.
glad they have prescrribed you something. Hopefully you can get some rest now. I know what you mean about normally being a strong person but feeling beat! I’m feeling pretty crappy today but still trying to work and entertain little one but have just given up and come to lie down. Must get better at listening to my body and taking the advice I’d give others!!!!
hope the painkillers work quickly xx
Just a quick update to my previous post - I've just had a call from my GP who has prescribed me something stronger - I guess I misunderstood the doctor from the hospital.
Well I called the helpline and they were lovely but I feel a little frustrated with my call back from the hospital. I've been told just to try taking ibuprofen along with paracetamol. If it wasn't for COVID-19 they would have asked me to come in, check me over and maybe prescribed something stronger. I'm not sure I can cope with another sleepless, painful night. On the other hand I don't want a risky hospital visit. I'm normally quite a strong person but this has me beat!
Fantastic reduction of your tumour Daisy! I had fortnightly ec. Felt utterly wiped out day of chemo and most of fortnight needed naps in the afternoons. I tried to exercise most days where possible. Felt off my food post chemo but did not have too much nausea. I cold capped initially but still lost lots of head hair. Ended up giving up cold cap and shaving after 2nd cycle. Still got eyebrows and eyelashes for now at least.
Carisma - I have gone from ec to weekly pacli. Definitely call them to get advice re the pain.
Great to hear your tumour is shrinking Daisy and by a lot too! I have been using cold cap but my hair has thinned a lot. EC definitely makes your hair fall out though my eyebrows and lashes are still there although thinned out too. For me I didn’t have a lot of nausea but my veins have suffered with the Epirubicin - the red stuff. Both arms now have sore veins but that’s me had my last EC now. I’ve had an extra 4th cycle of it and am feeling pretty rough this time. It seemed to get worse each time lasting about a week then improving afterwards.
By the way I’m in Scotland near Aberdeen as I know you has asked earlier.
My hair came out with FEC (I think it is the E part that makes your hair fall out). Good news that your tumour is shrinking though. I've not really bothered with my wig at all - just wear scarves, etc.
Following my 1st Docetaxol I've had a lot of muscle pain since Friday - it felt as though every muscle in my body was contracting (yes, a little like labour pains) and I've not really been able to do much. Feel a little better today but if not better by tomorrow should I wonder if I should phone the helpline? I've only been taking paracetamol which hasn't really touched it and wonder if I should get something stronger - or is it something I should just grin and bear.
could i just ask if anyone had the EC did your hair fall out ? I still have some hair but its very fine and fluffy but doesnt seem to be coming out from roots like previously.
I wear my wig when i go outdoors but just put a cotton hat on in the house.
Thank you vasanthy
I hope your 5th chemo goes well for you tomorrow.
Stay safe and all the very best wishes.
Daisy- happy to hear your tumour reduced in size. Hope your EC will reduce it further .
thomaschix- Happy you are feeling good in this cycle. I am hoping for the same for same thing for me as I have my 5th chemo tomorrow.
Yes it was lot to take all in . Glad tumour has responded . Just wish my wbc would stay at a normal level as its a worry. I always feel better when there is a plan.
He wasnt sure how much of the EC treatment i will need he will do two cycles then ultrasound again.
My throat still feels tight still and keep getting hot flushes and so tired today
Glad your throat is feeling better today and hope you manage to get some rest. Glad this cycle has been easier for you.
Love Daisy xx
That sounds like a lot of news to take in. How are you feeling about it all? Sounds positive that tumour has reduced and glad they have some sort of plan in place for your treatment.
is your throat feeling ok? Touch wood I seem to have been a bit better this cycle, just tired!!
I went to see oncologist today to get results from ultrasound . Tumour has decreased to 2.6 from 4.6 / Lymph nodes show no changes . They are going to start EC on a two weekly cycle to hopefully .
Has anyone else had this regime ?
My White blood count isnt good again . It has now gone from 20 too high to 0.4 too low in a week. Subsequently he had cancelled my last paclitaxel treatment which was due on Wednesday.
In relation to my throat he also feels that i may have had a reaction to the chemo drugs so another reason to discontinue for this week.
They will then start EC treatment and rescan after 2 cycles to see how it goes. Then refer back to Breast surgeon to discuss surgery options.
Bloods have also been sent for genetic testing.
Just got to keep checking Temp due to low bloods . I just hope they increase soon. Just told to rest.
Hope everyone is having a good day and staying safe.
Love Daisy xxx
Good luck today Thomaschix! I love your fundraising work! Sounds like fun? Glad yr throats are easing up and you are feeling better Daisy. I had some reflux pain on ec which was helped by famotidine. I started regularly rinsing my mouth with bicarb of soda solution- seems to help prevent infections and mouth sores. Did not really feel throat tightness though.
i live in South east london/edge of kent- some nice parks but I envy you yr mountains T!
my kids are 11, 15, 17.
enjoy the sunshine all ❤️
I never thought I’d look forward to going to Tesco so much!!!! Lol!!!!
Glad your throat is feeling better. I’ve got some mouthwash too and that does seem to take the edge off.
Maggies is a great place so glad to be supporting them.....even if I do think maybe I should actually be taking it easy!! Ah well!!! My little one is 3 1/2 so sure he’ll keep me motivated!!!
hope you have a nice day in the sun xx
What a fantastic thing to do . Well done for raising so much money especially when you are going through all this treatment and looking after a little one. How old is your child ? Ive got two children aged 15 and 18 . My Daughter is due to start at Bangor university in September . Hope you managed to get some rest too.
Maggies centres sound like a supportive point. We dont have anything like that here in the midlands.
It must be lovely to be surrounded by such beautiful countryside much better than living in a city !
My throat feels a little easier today so far . I tried some difflam mouth wash too and also the co amoxiclav antibiotics may hopefully be starting to work now.
Enjoy your day and well done again. iI know what u mean about getting out. i cant wait to go to the shops and do something normal again.
Thanks Daisy (i’d almost kind of forgotten!!!). How are you feeling? I’m very achy today and throat starting to get a bit scratchy so hopefully little one will let me get some rest.
However I crazily signed up to do the 2.6 challenge for my local Maggies cancer centre. 26 minutes of “exercise” on the drive each day for a week in fancy dress singing show tunes. Raised £850 since Thursday so feeling a bit of pressure to actually do it now!!!!
I'm from South Wales and surrounded by hills that I can’t wait to get back out on....but to be honest I’d be happy just to have a walk around the estate!!!
Good luck with your Mri Scan today.
Hope all you ladies are doing ok and enjoying seeing the sunshine.
What part of the country are we all from ? Im wolvèrhampton in west mids
Its great to see the sun but cant wait to take my dog out for a walk !
I remember you posting a nice picture of the beach Tracy hope weather is nice in Scotland.
Hope everyone has a good day
Thanks Daisy. With my first three treatments of FEC it just felt like my throat was tight (almost like a bit swollen) but last treatment it became more painful so all prepped and ready this time just in case (I hate the anticipatory waiting for side effects to kick in!!)
thank goodness for the weekend and sunshine tho so we can sit in the garden with apple juice and pretend we’re in a beer garden with a cider!!!!
Thank you so much for your prompt reply sorry to hear you experience it to its so uncomfortable. My throat doesnt feel sore it just feels like some one is putting a band round my Neck.
Will ask them about mucostis thank you .
Good luck with your scan on Sunday and with your meeting to discuss surgery. Hope your final chemo goes well and then a date for surgery .
sorry to hear you’ve not been well. I’ve had a tight throat on almost all my treatments (just waiting for it to kick in this cycle after treatment Thursday). It used to clear up by itself but after my last treatment (which was my first herceptin and docetaxol) it caused me lots of problems and I ended up with medication for thrush and then antibiotics which eventually helped. Nurse thinks I suffer with mucositis which made sense when I read about it. Felt like swallowing razor blades for 2 weeks. Not pleasant!! They’ve given me fluconazole this time just in case so see how it goes.
got MRI scan on Sunday and waiting on pat with breast surgeon to talk about mastectomy after next/final treatment. Was just getting used to 3 weekly cycle of chemo and it’s all change again hey?!
Glad ur first paclitaxel has gone ok . I havent tried fasting personally but i think some ladies have in previous posts . Maybe they could advise ?
Hope everyone is keeping safe and coping best you can with sheilding I had my scan on monday but will not get the full report till monday although the radiographer seems to think the tumour had shrunk but couldnt confirm the lymph nodes without seeing previous report. Due to see oncologist on Monday.
Unfortunately ive not been very well this week . I had to have an increased dose of the filgrastim injections the previous week which made my WBC to high now which has given be awful side effects as dizziness and a swelling to my throat which is causing such discomfort. I have been given a course of antibiotics and a nasal spray to try.
I was unable to have my chemo treatment on Wednesday due to this.
My throat doesnt feel sore it feels like a tightness around it . Has anyone else experienced this?
Ive tried all the usual honey throat sprays etc.
Im just trying to keep out of the hospital environment as much as possible due to the current situation, my temp has been fine .its just making me feel so low in myself as unable to keep occupied.
So glad to hear you have had your last EC treatment and when do u start your new regime ? I have the last paclitaxel on wedneday hopefully. Then to start on EC . Feel quite nervous but hopefully having the break in between may help with the White blood cells to behave. I havent got a picc line i have just had cannula in each chemo . Hope your arm is feeling better too. Just so want to get all this Chemo done it feels never ending at times and just so hard
I cant wait till we have all finished ladies . Stay safe .
Hope everyone is okay? I had my first paclitaxel today. Very relieved not to get a hypersensitivity reaction. I found EC quite exhausting for a couple of days and then not too bad- I would have tired days when I needed to sleep a lot and less tired days when I could keep going longer. I was on the dose dense fortnightly schedule so might have been more tiring. Anyone else use fasting to reduce side effects? Xxx
Glad you are feeling better Vasanthy and I hope your next round of Docetaxol is kinder to you. From speaking to some of the ladies at my chemo session yesterday it does seem as though the first one is the worst - although I realise that is a generalisation.
I had my first Docetaxol yesterday and so far I feel ok - a little weak but that's all. I know it is early days yet but I can hope for the best whilst expecting the worst.
Daisy - hope your scan went well.
artycat- I was also so worried when I started docetaxol and it was little harsh on me with severe headache body pain and fever which made me to visit emergency For the first time in my chemo time. But I have recovered now in my 3rd week ( little bit slower than from FEC) and inching towards my 5th chemo which is on 28th.
now I know what to expect from this and hope will be able to manage it.
Sorry to hear you’ve been feeling so unwell Daisy. That sounds like it must have been quite scary so I’m glad your docs have worked out what is going on. I wish you so much luck and will be thinking about you tomorrow - everything crossed that you are well enough to have your scans and that things are going well xx
I have my last EC on Friday all being well. I’ve haven’t had too bad a time with it. Each cycle I feel unwell for around a week but it’s mainly just feeling tired and headachy and off my food then improving over week two. By the third week I’m back drinking coffee and food tastes good again and I feel quite normal. I have a sore arm though caused by the epirubicin. It has damaged my vein and has not got any better over five weeks but as you have a PICC line that may not be a problem. I’m the opposite! I’m all worried about starting the Docetaxel in May. Since EC has been quite bearable I’m dreading the thought of the new regime making me feel much worse. But if it’s killing those cells I’m all for it. I’ve had borderline WBC each time but they have always let me go ahead. Hope it goes ahead this time too.
Feel free to private message anytime Daisy if you want to talk more as I’m always happy to chat xx T
Hi Tracy and Everyone on this supportive forum
Vasanthy hope you are feeling better and your headache and cough are improving?
Tracy . Glad you were able to have a good discussion with your consultant so you have a plan to work towards. It is so confusing on what treatment plans etc and chemo regimes are .
I have 2 more paclitaxel cycles to go before starting on EC regime.
I havent been very good over the last few days with tightness in throat and so dizzy that havent been able to get off the sofa. Also experiencing awfulm hot and cold flushes My face had a peculiar sensation and numbness to nose. I contacted the Emergency number and had to go for pre chemo bloods which have now come back far too high which is why they feel im feeling so poorly. The filgrastim injections were increased on two last sessions due so ive been told to discontinue those now as they feel its the injections which have caused SE. Has this happened to anyone else ? Chemo staff will contact me tomorrow to see how i am feeling.
I sm so nervous as got my ultra sound scan tomorrow too just hope. I will be well enough to attend.
How has anyone found the EC treatment ? I feel quite anxious to start . Has there been anytime where noone has needed to carry on with so much. Really feel like im struggling at moment and just want surgery although i appreciate how research is best way forward . Just sometimes feels hard not having a set plan to aim towards .
Sorry its a long post . I hope you are all keeping safe and i send you all my best wishes .
Thank you for the good wishes.
Vasanthy - How are you feeling? I hope your headache and cough are easing.
Daisy - How are you getting on? Have you started EC yet?
I’ve spoken to my surgeon today and she says I will most likely have a mastectomy in July because the tumour has fragmented rather than shrunk down like a deflating balloon as hoped. I’m totally prepared for that though. Reconstructions are on hold due to Covid but I’m happy to wait and make sure the cancer is gone. I will be able to have a reduction on the other side though I would prefer to have a double mastectomy. They’re not really open to that unless you can prove its psychologically necessary for mental health though. I will need radiotherapy too. I have discovered that my tumour is grade 3 TNBC the same as yours Daisy. It’s all so confusing!
Hugs to all 🤗 xx T
Tracy- happy to hear that chemo is doing the duty perfectly.
Daisy- hope your chemo went ok today and you are feeling alright
got some relief from headache and still having cough which is a irritating thing to go through.
Hope everyone staying safe
So glad to hear that the chemo is doing its job and you feel more reassured now after speaking to the oncologist.
Its such a difficult time with everything going on in the world too.
Im glad you feel so much better now.
Mine is triple negative grade 3 with 2 lymph nodes . I have spoken to genetics nurse today and sending bloods off for the screening test. Just so much info to take in. Felt really low today as still experiencing problems with my throat /nasal strange sensation.
Just got no energy at all so havent been able to do anything much today. Hate leaving my daughter to do everything that i normally do .
On a positive note my Wbc are behaving this week with help from the injections so i can have chemo tomorrow Number 10 . 2 more left of this cycle before changing across to EC
Did you get many side effects of EC ?
Hope you are feeling better and your headache has subsided.
Take care all
Vasanthy- so sorry to hear you’ve been feeling so I’ll. I hope you feel better soon. Sending lots of love and hugs xx
I had a good chat with my oncologist this morning. He says my tumour is showing good signs that the chemo is working. Rather than deflating like a balloon which is what I was expecting and hoping for it has fragmented. He thinks that if they looked at it through a microscope it would show that the cancer cells are dying. I feel so much better now and am ready to get on with the rest of my chemo. One more EC then three Docetaxel and Carboplatin at three weekly intervals. Then surgery which is likely to be a mastectomy and I have let him know that I’m not bothered if I need a mastectomy - just get rid of it! I think he was a bit surprised! To be honest I’ve always hated them (and that’s not too strong a word for how I feel about them) because they’re far too big for a wee short lady 😂. And now they’re having their revenge... I’m likely to have radiotherapy as well in case there is any cancer left. Then probably oral chemo as well. They’re throwing everything and the kitchen sink at it as it’s a grade 5, triple negative, fast growing cancer with high risk of secondaries and a large tumour however they have seen nothing in my lymph nodes and no secondaries have been found so far. I couldn’t really cope with it or accept all that at the beginning.
Take care everyone xxx
Oh no Vasanthy, that is really horrible- so glad you are able to be home now. This will all pass. At least for us undergoing chemo now- the whole of society is joining us in lockdown and we are not missing out on much. It is a more scary time but there are still treatments and care available for us and we will get through this. Much love to everyone
Sorry to hear you are feeling so unwell and hope that today is a better day and you start to feel better.
Keep taking each day at at time and the there will soon be an end to this horrible experience and life can get back on track. Its such a hard regime to go through with all the side effects but WE Will GET THERE.
I sometimes look back on older posts that ive written on how i have felt and then you can see that you have come far and also i read other peoples posts from last year to see that they are through it now which gives me some motivation .
Just rest and hope you feel better soon.
ah today is the lowest point of my chemo days as of now . Landed in emergency isolation ward for 8 hrs due to severe headache, body pain and a temperature of 38.1. They gave antibiotics for 7 days and discharged me late in the evening. Slept for 4 hrs and now wide awake.
where is that light at the end of the tunnel. 🧐😪 - please come fast .
hope this phase also goes away very fast.
Thanks for that - I hope you get some relief from your headache soon. What pain relief are you on?
Hope you headache is feeling better today. The joint pain is awful isnt it. I take paracetamol and have tried the epsom salt baths too as someone suggested on the forum
Hope all you lovely ladies have had a nice Easter as much as possible in the current climate .
Take Care and stay safe
Love Daisy xxx
had my docetaxol on 7th and my injection on 9th . From the next day I started feeling pains in my joints especially my knees and shoulder. My headache is the one which is bothering me a lot as it is so severe . Waiting eagerly for these side effects to go .
Hi Tracy / Everyone
I know what you mean about not asking questions . I was the same. I was so shocked that everything just didnt register. I have started to keep a diary of any questions i want to ask by the side of my bed as its usually in the middle of the night when i cant sleep it comes to me. I thought we were on the same treatment plan but the other way round . My EC is due to start end of April. I just cant wait to get Chemo over some days i feel like ive just had my legs swept from under me and cant do anything then the next day may have a better day with more energy and focus. Ive got appt for genetics testing on Tuesday thats if its not changed to phone consultation with the current state of the world
I hope that everyone is keeping safe and sending you all lots of love
Thank you Daisy - I've normally done my injections in the morning but I'll maybe try doing them early evening next time round.
Thank you Daisy xxx I’m hoping that any response is better than none. I will have lots of questions for my oncologist next week. I have one more EC planned in two weeks then moving onto I think Paclitaxel and Carboplatin. I’m now realising that I didn’t ask nearly enough questions at the beginning due to the speed things happened and the shock I was in.
I hope you have good news when you get your scan soon xxx
Hope each day you feel a bit stronger . It so hard getting through this chemo treatment. Some days its like ive been knocked off my feet and climbing the stairs is like climbing a mountain.
I too are on on the filgrastim injections and they have now increased them gor me to administer after each chemo where previously had them only after my paclitaxel and carboplatin cycle now they are every week. I find they give me joint pain.so what i tried last time was to administer them early evening so then i could try to go to bed and sleep and i did find this better.
Also i try heatbags on both knees .
Sending everyone lots of love and keep Safe
I have been thinking of you today
Sorry to hear its not quite the result you wanted obviously but maybe it needs to break down then reduce more on the next stage of treatment . Hopefully your oncologist will give you some guidance on what to expect. I personally think that is what is so hard not knowing how it should respond and how quickly. I sometimes get so scared to go before hand as then get so nervous to get results. Whats your next chemo treatment? I couldnt remember if u were the same as me .
Sending you a hug and stay strong.
I had my scan and mammogram this morning. The doctor told me while doing the scan that the overall size has not reduced but that the tumour looks less dense and has split into pieces. Not really the result I wanted but at least there has been a response and not any worse. Can’t help feeling down about this but will see what the oncologist says next week.
Hope everyone is feeling ok today xxx
I feel as though I'm just surfacing from 8 days of fog - I had my last FEC a week ago on Tuesday and I've barely been able to function since - no pain or sickness but absolutely zero energy and unable to contemplate doing even the most basic of things. I finished my filigastrim injections on Tuesday and although my energy levels were a little better yesterday I had an incredibly sore back which impeded my movement. Loritadine did seem to help though. This was definitely the hardest hit of my 3 sessions but still manageable.
My anxiety levels have gone through the roof though - I had my shielding letter on Monday and I think, just seeing it written down, really hits home! I was already anxious about changing to T - and I will be interested to hear of your experiences Vasanthy, as lots of people seem to suffer with it, without throwing Covid-19 into the mix as well!
Hope you get some relief Thomaschix - I have had really loose bowel movements but not exactly D (not even going to attempt to spell it) but keep saying I would prefer that to constipation - I didn't realise you could get both 😱
Hi yes you should be able to get difflam or something similar a pharmacist at the pharmacy will know, if they have none biotene is good too, but try for the difflam. 😳 you have both 💣💩 and 🌪💩😳 now that’s just being greedy 😁 I’ve not heard of the before but I hope someone else who has pops on to help. I had 🌪💩on the t 😂🤣🤣🤣🤣quicker than usain bolts 100 m 😂🤣😂🤣😂 He wouldn’t have even got out the blocks as I’d be crossing the winning line 😂🤣😂🤣😂sorry you are having to juggle both 👭 hang in there you know you can do it ❤️😘💕💕✨✨Shi xx
She also thinks that what I was considering diarrhoea is more likely to be overflow from constipation! Now there’s a whole new experience....constipation and loose stools all at the same time!!!! 🤣
gave the u it a call and they said to keep an eye on bowels but weren’t too concerned at the moment
mouthwash sounds like a must to get hold of. Is it something I can pick up over the counter from pharmacy?