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?
Thomaschix ❤️ Keep eye on your temp too. Have you got some difflam for your mouth? It can help with sore mouth and ice lolly ❤️ Please ring your unit you are getting near Nadar ❤️Please keep safe 💕💕✨✨Shi xx
Thanks Vornsta. Mouth sore, dry and everything tastes rubbish. Had Rice Krispies for lunch because I refused to waste nice food when I knew it wouldn’t taste good lol!!!
gonna see how I feel tomorrow and call if I need to then
your treatment regime sounds pretty hard core! Hope the 2 and a half weeks is a nice break for you and you can enjoy some of this sunshine xx
So sorry you feel rubbish Tomachix! Hope the jelly and ice cream helps. Is it sores/altered taste or dryness alone? Drink a lot and try rehydration salts if diarrhoea is v bad. Don’t be shy about calling them!
Congrats on positive scan Vasanthy and fingers crossed for other scans.
how was chemo Daisy?
I have just finished 4 fortnightly EC and start weekly paclitaxel in 2.5 weeks. Feeling super tired but ok.
best wishes to all
glad to hear the scan was positive Bas and that the chemo is going ahead as planned Daisy
im on day 6 post cycle 4 (first docetaxol and herceptin) and it’s fair to say I feel dreadful. I’ve still got an upset stomach and can’t face phoning the helpline again to see if I can take something for it. Plus my mouth feels soooo dry it makes the thought of eating full me with dread because I know everything will taste rubbish and really be quite uncomfortable. Will definitely be hiding my Easter eggs from hubby and son until I can enjoy them!
sorry for the rant....feeling very sorry for myself but hoping jelly and ice cream will cheer me up
Hi daisy and tracy
will pray that the scan report should give you all happy news
And daisy hope ur chemo went ok
Hi Vasanthy, So glad to hear your scan shows progress and that the treatment is working. That’s all I want to hear too. Love Tracy xx
So pleased to hear your good news about your scan vasanthy. Ive got mine on 21st feel so nervous . Im just having chemo at the moment . I wasnt sure if i would be able to have it today as my white blood count has dropped again but was able to proceed. They have now prescribed some more filgrastim injections Hope all of your treatment /scans all go ok this week.
Stay safe everyone
Love Daisy xxx
had my 4th chemo yesterday (docetaxol). Don’t have any idea about the side effects. Dr said some side effects which may happen like fluid retention due to that may gain weight , then bone pain .
as of now I am ok. Waiting with fear in my mind.
Hope I won’t suffer with much side effects as didn’t suffer much with FEC
and I got my ultra scan report which says my tumor has reduced and I am happy with that.
Hi Mini mad
Hope you are ok. Could i just ask it you had the 12 week paclitaxel only or did u have to have the EC treatment too ?
If so what was your experience?
Sending you best wishes Tracy for your scan and mammogram on Thursday . Hope all goes well. Ive got my scan which isnt till 21st but thats all i can think about although i try to distract my mind as much as possible .
Chemo is so very tough going and struggle especially with tiredness but then having to think of how far we have all come since thats first one . We can soon be all through this hard times.
Hope you are all staying safe and keep well
Hi Tracy and Vas
Thank you for your replies to my last post.
What regimes are you next moving onto ? My last cycle finishes in 4 weeks then due to meet with oncologist on 27th following scan on 21st. The oncologist is going to reduce my dose on wed due to neuropathy in hands and my heel. He made clear not to be going outside apart from hospital appts which i hadnt been anyway. WBC remain on low side but high enough to go for next treatment on Wednesday. Then they are going to increase my filgrastim injections from wed.
Hope you both are keeping well
Lots of love Daisy xxx
i had my first Docetaxol (and herceptin) last Thursday following 3 cycles of FEC. Have to admit I am much more wiped out this time (was very lucky with side effects from FEC) and my stomach has not been happy. Don’t think being stuck in the house trying to work with a demanding 3 year old is helping but I’m definitely resting more than I have done previously!!
Hope all goes well for you. Keep in touch xx
Good to hear bloods are all good Vasanthy. Like you I am on EC then moving over and worried about how I will feel on the new chemo regime. I still have one EC to go as I am having four. Wishing you luck and hoping that you don’t have too many side effects xxx
Done my blood test and all good.
so having my 4th chemo tomorrow as scheduled . Little bit worried because this time they are giving docetaxol. Since receiving it for the first time worried what will be the side effects, as I didn’t have too much side effects with FEC
hope this also goes well without much side effect.
all of you take Care and be safe at home. Waiting for the time when we can resume our normal life.
I can’t say Ive had exactly the same symptoms but I do have a bit of hay fever at the moment which is normal for me. After my first two EC treatments I felt a bit like I had an irritation just below my throat which was a bit worrying and made me feel like I was a wee bit breathless too. Don’t know if that’s similar to you as it wasn’t really nasal with me. I had my third treatment yesterday. Managed to drive myself in and back though I was feeling pretty washed out afterwards and most of the day today. Drinking gallons of water and that seems to be helping.
Our chemo unit has been moved to the children’s hospital so you don’t have to enter the main hospital building and now treatment is in smaller rooms with lots of space which seemed a lot safer. I have a mammogram and ultrasound on Thursday to see how things are going so I’ll no doubt be on tenterhooks until I hear if things are improving or not. Fingers and everything crossed.
Take care everyone and stay safe xxx
Hope Everyone is doing ok and keeping Safe.
This may seem a bit of a strange one but does anyone experience any strange nasal sensation. It feels like an irritant and makes me feel a bit breathless. Throat area is not sore or no sigh of infection. Im not sneezing or not runny nose. Just feels uncomfortable i was wondering due to lack of nose hair if causing an allergy.
Ive just got some priton to try today and currently using a dehumidifier in my bed room .
Just wondered if this strange one was just me .
Love Daisy xxxx
❤️ It’s worth a try with the water and I think most of us oct17 chemo lot hokey cokeyed with the duvet most night 😁 you’ll be passing on tips and guidance to threads that follow 👭 it’s just part of the beauty of the threads ❤️ hope the water works for you as it does me ❤️💕💕✨✨Shi xx
Thank you very much shi. I will keep drinking. I have got one of the gel cool pads to put on my pillow which does help at times. Its such a horrible experience on top.of the chemo SE . I keep checking temp too which is fine so far. It really has knocked me off my feet today .
Thank you for all replies its much appreciated
Found drinking a cold water when flushes started worked quite well ❤️ Chemo put me through menopause, I was 45. Worth a try but do keep eye on temps and rapid response always ❤️💕💕✨✨Shi xx
Thats how i feel too and feel quite irritated with the smallest things which is unlike me really as im normally quite relaxed.
I worked it out ive been stuck in for 20 weeks already and i think thats getting to me a bit too.
Just cant wait to go shopping when all this is over. It just seems ages since doing something normal .
Are you due for your treatment this week ? Xxx
Yes I’m having hot flushes too and no periods since starting treatment. I’m 50 and still had fairly regular periods but I’m thinking this might be it for me now. I do panic a bit when I get the hot flushes thinking I’ve got a temperature! Not sure whether we can do anything about it as we are probably not allowed to take any supplements? I’ve noticed I’m often irritable as if I have PMS as well so that may not be helping how you’re feeling either I guess. Hope someone else can suggest something to help xx
Does anyone experience hot and cold flushes. Since starting chemo my period have stopped . Normally very regular . Im 48.
Its happening about 5/6 times a day and through out the night.
I think that isnt helping how i feeling
Thanks for any advice
Thats good news your half way through .Well done .Hope your next treatment will be ok for you too.
Just checking in - had my third chemo session today. Was very different to previous sessions as they have moved to a different location in the hospital and we were all spaced out and curtained off so not as sociable as previous sessions - far fewer of us there too - on the plus side I was only there for 1 and 1/2 hours. So far, apart from the fatigue I've not been suffering too much although I have a bit of pain in my vein for the last couple of weeks and I suspect that's only to get worse as time goes on. Today was my last FEC so, assuming its still going ahead, my next will be Docetaxel which I am quite anxious about as I hear/read so many people who have had quite unpleasant experiences on it. This on top of the general anxiety about COVID-19 and not being able to get a reassuring hug from anyone is really causing me to be on a rollercoaster of emotions. On the positive side, I am now at the halfway point of my chemo!
Thomaschix, push again for it, it was offered to me straight away, I was 45 when diagnosed, I was lucky with the nhs trust I was in. Tell them you want it done private and ask how to go about it if they still don’t offer it ❤️💕💕✨✨Shi xx
great news on the negative genetics results. I didn’t meet criteria so my local genetics team won’t test but going to ask my oncology team again and see if they would do it (im 37 and mum had bc at 47 but not considered to be genetically linked as mine is her2+ and hers was estroegen+). We’ll see!
Had clinic consultation over the phone yesterday and went to clinic for bloods. Was eerily quiet!! Bloods fine so first round of docetaxol and herceptin on Thursday. 6 hours with no company....can’t decide if that sounds dreadful or blissful after 2 weeks of not leaving the house stuck in with hubby and 3 year old lol!!!
my result came back in 3 weeks.
and had my ultrasound yesterday and the radiologist said that dr will discuss the result in my next chemo which is on April 7th.
Hope it will be good.
Hi Daisy and everyone,
My genetic tests took a few weeks to come back. Mine were negative too Vasanthy though after getting my letter to say BRCA 1 and 2 plus several others genes were normal they also sent me a form to complete with family information about anyone related who had any type of cancer.
I am on EC at the moment Daisy. It’s three weekly and I believe I’m having 4 cycles instead of the usual three...maybe because my lump is quite big? It’s been fine. I usually feel quite lightheaded and just not right for a week afterwards then gradually improve over week two with the third week feeling quite good. I had no aches and pains or anything like you guys have talked about. The main problem I’ve had is that the second chemo was put into the same arm which has given me a sore arm since following the veins up my arm because epirubicin is very hard on your veins. As a lot of you have PICC lines that maybe won’t be an issue for you.
I totally agree! It is a bit irritating hearing people complain about having to stay in or not taking this seriously. Not to mention all I really need is hugs and company at this time and we can’t have those things. Grr! I’m thinking we’ll be doing this for a lot longer than most people so we have more to complain about!
Good Luck with your ultrasound appointment. I believe I will be having mammograms and another MRI later on to see if things are shrinking because my lump was difficult to see otherwise.
Hope everyone is keeping their spirits up by doing things they enjoy 😉 xx
Thats fantastic news so pleased to hear that varsanthy . Ive got my appt for genetic on 14th April unless its done by telephone in the current climate then send bloods across. Did it take long for results to come back ?
How is everyone coping? Ive feel s bit anxious today its hard enough going through this situation and trying to get through chemo. Ive got next session tomorrow. Which is cycle 3 treatment 2. Consultant rang yesterday to say she has booked me in for a ultrasound scan to check progress. Did anyone else have ultrasound or CT scan?
Hope you are feeling ok now too Sally,? Xx
Im currently on paclitaxel weekly then every x3 one with carboplatin. My treatment will then change to EC. Does anyone know what to expect on EC in relation to SE.?
Im just feeling so tired and anxious today just want to feel normal again . I find im getting quite fed up of people moaning having just to stay in when we are all having to stay in facing all this with chemo side effects too. Just want to be my normal "mum"
Hope you are all keeping safe and sending lots of love
atlast I got some good news. I received my genetic results today and it says all negative . So one hurdle crossed.
hope everyone is coping well .
all sit tightly as we almost crossed 50% of chemo cycle
Just wanted to say keep safe and sending lots of best wishes to you all . Hope everyone treatment is going as well as these things can.
Love Daisy xxxx
Good to hear everyone doing ok😘. Yeah it's scary having to go in for chemo, I'm going in twice a week for next 6 weeks (although at least I get to escape from husband and teenagers😂)
The good news is that I don't have to go into office and have everyone staring at my hair (or lack of it!) Stay safe😘❤
good to hear everyone is doing reasonably ok in the current circumstances.
great news that your wbc is ok Daisy and you’ve managed to get back on track.
Im trying to juggle working full time from home (with hubby working from home too) and entertaining a 3 year old which is proving very tiring!!
have my next treatment scheduled for next Thursday and it’s my first deoctaxol and her herceptin so I’ll be there for the whole day on my own which isn’t great but I’m also kind of looking forward to having some time away from the house!!! Just hope I don’t feel too anxious leaving the house
my hubby has just ordered a treadmill so hoping I can use that to keep a bit more active and also doing kids yoga with the little one each morning which is really fun (but not exactly energetic!!!)
big hugs to everyone x
Great yr wbc are ok Daisy! Sorry it has been so frustrating. I agree, not nice doing chemo alone. I felt pretty fed up having it all by myself on monday. Xxx
Im currently typing this while im in the chemo chair. Thankfully my WBC have increased. Hope you are all keeping well . I have been in doors since October due to the chest pain so this feels a very long time. Its hard to keep busy now really especially with all side effects from Treatment. Apparently i can start from my double treatment which i missed last week. ( i was told not to worry about the one before hand ) The consultants senior house offiicer wasnt very helpful to be honest as she didnt know my regime or even when to see me again so it felt like a waste of time and more importantly an increased risk of attending a clinic area in this climate. My chemo unit states its business as usual but need to make appt to attend before hand 4 bloods.
Currently had the tacol now just awaiting the carboplatin. Feeling very tired at moment and feels strange not to have anyone with you.
Take care. Try not to get too anxious if u can
Hi Vornsta, Thanks for the recommendations. Will have a try 🙂
I’m hoping I will still get chemo but have not been told anything but will be very scary going to get it. Feel like wrapping myself in bubble wrap to get there. It seemed funny looking at some of the pictures of people wearing plastic water bottles on their heads but now realise it was NOT funny at all and feel sorry for not getting it at the time. Love to all xx
Is everyone continuing with chemo? I am for now but find it scary going to get it.
Exercise classes online- hasfit is great, Jo wickes youtube videos, downdog yoga app currently free. More and more stuff going on online currently including dance as well so have a look around for what suits you.
Also a friend of mine on facebook is doing pilates - search stillfitness.
Stay strong ladies, keep focusing on managing stress, doing a little exercise and eating as healthily as possible. Much love to all xxx
Hi Vasanthy - Yes group is very quiet! Such a strange and worrying time for us all! Hope you are doing ok while in isolation xx
Hello Daisy - How did you get on with the oncologist on Monday? I hope you were able to get some answers about what happens with your missed treatments and that you are feeling a bit better about things in this real life movie we find ourselves in. Hugs 🤗 xx
Hello all - I’m in complete isolation as we all must do now. My hubby is here but we are keeping our distance though he hasn’t been out and about now for days either. I’m managing to keep my brain busy but really concerned about lack of exercise so thinking about looking for a good online yoga, Pilates or exercise class if anyone can recommend one.
Take care everyone xx Artycart xx
Hope everyone is doing well and keeping safe in these difficult times.
I wasnt able to have my chemo again this week due to low blood count. So thats session 6 and 7 ( that was a double of taxol.and carboplatin)ive now missed. I didnt realised that they still carried on to the next session which will be 8. Does any one know if u end up catching up at the end of the treatment plan . ? Or does it just depend on results.
This has made me feel really low and obviously self isolating due to high risk of infection. Im just hoping when i go for bloods on monday and to see the oncologist monday too that my blood has increased.
This coronavirus is very worrying my hospital has just been identified as one of the second hot spots in the country following London. Although i desperately want to proceed with treatment i feel very scared .
Im a Clinical Nurse Practitioner and have worked in the NHS for the last 30 years just wish i could be there now to help patients instead of having to have treatment myself.
Take Care and stay safe everyone
Love Daisy xxxx