Hi maryKamille, the worst thing about T is the mouth issues. Have you tried protein shakes? They will give your body nourishment but can be thinned to whatever consistency you need. There are some nice flavoured ones online. Hugs x
Had my last chemo today :-))))))))) No bell to ring though 😞
Didn't get to sleep til 4am this morning thanks to steroids. Back off to bed for a nap!
Hi all . I am day 14 post 2nd T and tastebuds are still a bit iffy.
Think I have lost all lower eye lashes (hard to tell as Im fair anyway) and my eyes
keep watering. Anyone else get this and anyone know of anything to help.
Hi Wahini, Dikat and everyone
I am on day 15 of my 5th cycle and it's worse than all the others put together. Mainly because I have total fatigue and can't eat. I can't imagine what cycle 6 is going to be like.
I had my preChemo appointment yesterday. A registrar instead of my usual. She is referring me to adietician - but how long will that take? (I was told to ask for a referral by a Macmillan nurse at a drop in centre on Monday last). I am hoping I can get some high-calorie supplements which are savoury or neutral in flavour and no chewing involved.
Nearly all food tastes disgusting and now there is the issue of texture, too. I am losing weight and I had managed to stabilise it before. Apparently, Chemo can kill the taste buds, saliva glands and cells in the neck - which make swallowing difficult.
Anyone found anything that you don't have to chew, apart from soup? I already have to puree vegetable soup but there's only so much thickness I can take. I can chew a little if I am very quick about it and thrust the result down my throat even faster! As soon as food hits the back of my mouth all the texture issues immediately make me want to throw up!
Good news. You are doing so well! I don't think you will have Chemo after surgery, I have not heard of that. My Oncology department told me that some drugs are 'once in a lifetime' only. For example, I am now on EC (was FEC5) and no-one can have Epirubicin again because it affects the heart.
Sorry to hear that, Fluffysunshinepants
You could do without problems 'both ends' so to speak! I guess the fact that you have already had FEC has weakened your system a lot and these drugs do love to find and produce further problems. The only consolation, if it is one, is that we all seem to get over each side effect in turn. Hope you doctor continues to be helpful and don't worry about how many times you might need to see someone. We're the ones suffering - not them!
Best wishes xx
DiKat, I have cording of a vein in the same spot. I also have a vein that looks red and is sore. The nurses told me it is caused by chemodrugs, especially FEC, and can take a long time, like months to a year, to go away.
I am on day nine of my last cycle and phew, I am so tired. I am not bouncing back as quick from this one. I am glad I will not have to go through another and hopefully it is uphill from now on.
I was just wondering if anyone knows if the chemo itself can cause cording. I’ve had a sore area on the inside of my left arm from the crook of the elbow down towards the inside of my wrist on and off since my very first chemo. I noticed yesterday when I twisted my arm, a thick thread pops up, very weird. Does anyone know what this is?? Thanks
That’s brilliant news absolutelyannie. You are obviously having a very good response to the chemo. I thought it was radiotherapy after the lumpectomy, not heard or read that anyone else has had to had further chemo if you’ve had it first but I may be wrong. Are you having the 5 booster rads on top of the normal 15 which seems to be based on age in my area. 🤗xx
@Stuck at 14 wrote:
Just adding that I hope I dont sound awful talking about our ages- I just meant I had one of those 'why me, I'm too young, it's not fair'moments but I know that they are stupid and rationless. Hope that makes sense.
Hi Stuck at 14, I use the February post, just saw your post and wanted to say that my daughter was diagnosed at 34 and had her mastectomy last December. Eventually, to avoid future issues, she will have to take her ovaries out.
Like you, we keep asking the big 'why'.
No family history of breast cancer, no smoke, no alcohol, no drugs, no take always, careful diet, etc., and yet.... It is horrendous, monstrous, so unfair!
You are not alone, you are under fire now, but I will promise, it will go away, you will be free of the nightmare.
Hi All (Dikat not sure if I am replying directly to your comment)
After a four hour wait I saw my surgeon today. very happy with progress tumour reduced by 80% and have to have ultrasound after a further 2 sessions of Docetaxel and 2 more sessions to go. Provisionally booked in for lumpectomy in June all going well
YAY half way there but hope I dont have to tread this journey again.
mix up over post surgery treatment. Surgeon says radiotherapy for 3/4 weeks but oncologist says 4 chemo sessions after surgery. Playing it by ear and hoping no chemo after surgery.
Lovely to have you back. Have you had an MRI to check the status of your lump or are they doing that after your final chemo? Have you had any thoughts about which way you will go with surgery or are you still undecided? Xx
nothing to say really except that I'm still alive and occasionally read the forum. I havebeen having THP and jyst had third of those on Monday, so thats 6 down (3 FEC, 3 THP) and one to go on the 23rd April. THP gets me down in my mood and makes me just not want to do anything at all which is why I've not been posting. Just hiding. We are all on the home stretch on Chemo now though, with different journeys to follow once its all done. Scary stuff huh ??
sorry to hear you have been suffering. It’s weird how the different chemo’s affects us all differently. I’m the other way round, tax etc. Isn’t exactly a walk in the park for me but so prefer it to FEC. Hope things improve for you x
Not sure i like this new chemo, Doxcetol and Carboplatin, since my first one last Monday i've had two visits to the Doctors. The first for oral thrush and now a UTI. FEC was far kinder.
I hope that my next one treats me better
Thanks marykamille for your reply. Sorry to hear you are suffering with restless legs as well, and arms. Hope it passes and you get a better night’s sleep very soon. Let’s hope the next rounds are kinder to us 🤞 x
I get restless legs (and arms at the same time) which wake me up, so no ignoring them. I find that it goes after a few days - well nights, really, because that's when it happens. Goes on for a couple of hours. I get up and walk about and do stretches but the disrupted sleep is a real problem, because we all need that oblivion, don't we? I love my sleep and really look forward to it.
I also get tingling and cramps in my feet but they are not nearly as horrible because they soon go and are nowhere near as annoying as the restless legs.
Hope that particular SE is only temporary for you. They say it is caused by circulation problems but with Chemo nothing is normal, so I wouldn't take much notice of that!
All good wishes xx
Sorry you are feeling rough. I have been so bad my T is now weekly on a reduced dose. Bonus of that is no bloody injections. I get the sweats too. I’m post menopausal so am blaming the steroids. Luckily don’t take as many of them cos chemo is weekly. I find the T is so much worse than the EC I was having.
Hoping side effects not as bad as they’ve threatened to stop chemo completely. Hope you pick up a bit soon. Sending a hug xxxx
Think you’re right about the probiotic thing Sunnydaze, somewhere in the back of my mind think I can remember the Onc saying not to have any until after chemo. Sorry you’ve been feeling rough and the hot sweats etc. Are getting on top of you. I asked the Macmillan nurse about them yesterday and she said the chemo reduces the oestrogen production which then shuts down the ovaries hence the forced menopause so all totally normal by the sounds of it. Just more crap on top of all the other crap!! Take care xx
Hi Sunnydaze, dead battery is a good description. I still prefer T to fec but really don’t like that bad week. I get the hot flushes with the steroids and in the bad week, but to be fair had them on fec too. Wouldn’t mind but having had 2 years of them, they had just stopped before chemo started🤦♀️
Dikat, i was told no probiotics on chemo, sorry you are in the wars again!
Had a phone call from the hospital yesterday’s to see my surgeon at 12 today and ct scan tomorrow so I guess the bc rollercoaster is ramping up again - keep going girls, we are getting there xx
like you am getting joint pain and hot flushes. Since being on chemo my periods have stopped so guess it’s all hormone related - am getting waves of hotness then cooling off during both day and night. Hope you find a way to manage them. I’m wearing layers to take off and on as needed 🥵
i think we have got to wait until the end of chemo before we start taking probiotics again Dikat. I am missing probiotic yoghurt and cannot wait to start eating it again.
i have had a rough couple of days on ‘T’ - definitely have felt like a dead battery, joint pain, fatigue and taste changes.Hence, why I haven’t been so active. One of the worst things I have had to deal with over the last few days are hot flushes and sweats, especially at night time, but also during the day too. My head gets really hot and starts sweating, does anyone else have this problem on ‘T’ or is it just me ? I guess it’s
hormone related caused by the chemo, but it is really hard to deal with when I have so many of them.
I will definitely ask, like you say want to throw everything at it! 💕
Well, I took my first antibiotic around 4pm last night and about 2 hours later stomach bloated and had awful indigestion all night. Never had probs like that with antibiotics in the past! Guess my weak digestive system has been weakened further by the chemo. Do we have to wait until chemo has finished before we can start taking probiotics does anyone know?? I will be annoyed if these antibiotics ruin my good week, especially if I don’t actually need them!
Hi dikat, I had the booster rads so 15 + 5 boosters because they can’t give you rads again in the same place once you’ve had it to an area, so I wanted the full arsenal throwing at everything. I was 45 at diagnosis and 46 by time treatments finished. Hi reddi 😘😁💕💕✨✨Shi xx
Thanks for the info Reddi. Now I’m wondering if she did say 50 and not 40. Chemo brain! I will be turning 50 around the same time as I’m due to start rads so will definitely ask the question
Hi @DiKat - me again from June chemo / December surgery. I got 5 booster rads for my WLE side and I am 47.
There is a chance that I got prescribed 15+5 partly because my WLE side (ER+/HER2-) did not respond to chemotherapy, but I thought booster rads were suggested for under-50s with WLE. (I had a mastectomy and no rads on the HER2+ side because of the extent of DCIS.)
Hi @DiKat - me again from June chemo / December surgery. I got 5 booster rads for my WLE side and I am 47. There is a chance that I got prescribed 15+5 partly because my WLE did not respond to chemotherapy
Sorry about your earache and abs.
I’m not being offered booster rads as I’vehad a full mastectomy and lymph node clearance. Looked on a website which confirmed this. Chemo brain here can’t remember which website 🙄🙄.
Generally feeling much better but had earache all weekend so trip to GP today. He said he couldn’t see anything but has prescribed a week of antibiotics. Don’t like taking antibiotics if not necessary but have final chemo in 9 days so don’t want to risk any delays!
Also, Macmillan nurse came to visit this morning. She said they will be discussing the results of my MRI at the multidisciplinary meeting tomorrow. She brought me a leaflet about surgery and the exercises leaflet for post surgery. She said I will be getting an appointment through to discuss surgery options with the consultant but would hope that I would be offered a WLE. I think I am leaning more towards this rather than Mx, which was my knee jerk reaction on diagnosis but I will make the decision once I’ve seen the consultant. I also asked if I would be offered the 5 booster rads and she said this is usually offered to under 40’s due to the higher chance of recurrence. Is this the case in other locations?
I bet it was scary fainting and not surprised it has knocked your confidence. Good luck with meeting the surgery team.
I actually fainted at the bus stop last week. four days after my second T. Think it was because I was standing for too long but you know what buses are like. It did scare me though as I am dependant on public transport and knocked my confidence a bit as I hate having to stay indoors.
Not sure if I am replying properly as when I go to OPTIONS on my computer there is no option to reply generally so forgive me if i have got it wrong.
2 more sessions to go. meeting the surgery team this week.
Hi Kitkat. Luckily today I am no longer so breathless when walking a short distance. Like you I now put it down to low HB. Ive been taking iron tablets this last week or so and think at last I am back to "normal".
When I had my T 10 days ago, the nurse did say my HB was a bit low but nothing to worry about and she took more blood and said would run it through their machine to see if any changes. Unfortuately, their testing machine was broken, so she couldnt do the test. Ah well. Feeling ok now.
Thank you all for your comments re tingly toes and fingers. Did mention to my nurse last time, but will be sure to mention again as don’t want it to last post chemo if it can be avoided.
As said this afternoon totally agree with other posts that this forum is so helpful for support, advice and of course a good rant from time to time! Thank you.
Thinking of you all 😊 x
i’ve some pins and needles but really suffer with pain in my legs and joints even in my hands and feet. Also got a cough and breathlessness. I’m going to have weekly T because of the side effects. Be careful with the peripheral neuropathy. As DiKat says it can be irreversible. Xx
Kc72, I have had three Ts and I haven't experienced needles and pins in fingers/toes. For this I am very grateful! My main SE are, tired legs and fatigue, and a bit of loss of taste but not too bad. Also my surgical site and arm (I had mastectomy with reconstruction and aux lymph nodes removed) get a bit more sore and I seem to bruise easier all over.
Thanks for your kind words 💕
I sometimes get a little peripheral neuropathy in my fingers but it doesn’t last long. Not noticed it in my toes. Did you have it first cycle? Maybe you will need your dose reducing next time. I was told by the Onc nurse to look out for peripheral neuropathy. She said a lot of people end up with it permanently because they don’t report the symptoms and have the dose reduced. I don’t want to alarm you by saying that. I mentioned it to the Onc when I saw him and he didn’t seem alarmed by the small amount I was having. As for aches and pains, mine are worse at the bottom of my back, back of neck, shoulders and chest and tops of legs. I’m convinced mine are to do with the Filgrastim as well as the T as they start to improve about 24-48 hrs after I’ve had my 7th one! Hope you start improving soon xx
Stuck at 14, feel for you. It’s rubbish any of us have to deal with this but at 35 you’re right it’s not fair. Hope the look good feel better session helps, it gave me a lift when I needed it.
Dikat, you’re so brave in your pic and still smiling after all those nasty side effects - you are a star ⭐️ Hope your side effects pass soon.
Drummerswidow nice you have your furry friends to keep you company. Dogs give the most love, least hassle and always grateful.
Had 2nd T Thursday. Am getting toes and fingers with pins and needles, aching hips, leg muscles aches and pains and restless legs. Anyone else having this? Paracetamol/ibuprofen combo not really helping nor did cocodamol last round.
We 3 have been having a lazy day. Got on the scales and I’ve lost more weight. I know what you mean about family getting on your nerves. My husband’s daughter has suddenly taken an interest in me! I think she’s just making sure she’s in the will! I only keep in contact because my late husband wanted it.
My sister has phoned and is coming next Sunday which would have been my Wedding Anniversary. She’s bringing food. Let’s hope I can eat it lol
Hi Sunnydaze and everyone else
I would like to add my thanks too. Sometimes I have felt so panicky about SEs and it is this forum that has helped me through so much. If it's possible in our cirumstances, you all make me feel 'normal' whatever that is. Anyway, it is such a comfort. Bless. XXX
Hi Stuck at 14, going through chemotherapy is tough at any age but you are more unlucky than most. I feel for you. I am in my early fifties, when age is a major factor in being diagnozed with cancer. So, I feel less like 'why me?' I just hope I have another 20 years left in me, and after that, well you have to die of something.
Pets are wonderful, aren't they? Unconditional devotion from your dogs no doubt. We will both be starting our Rads in May. Have you been tattooed yet for it?
Apart from my OH who is my best friend, too, through all this, I don't think I would want family around me as they would be too irritating! Sounds awful I know but another thing that seems to have gone out the window is my patience!
Is there any kind of treat (not food, of course) that you can give yourself? You need a lift.
Lots of good wishes XXX
Happy Mother’s Day to all of you amazing Mums out there. Hope you can have the best day possible
Sorry to hear you’ve had a bad week and sorry to hear you’re having to deal with this crap at age 35, even though, like you say, it’s pretty crap at any age! Feel free to rant on here any time. It does us all good to offload. The T is bringing quite a lot of side effects to me but still prefer it to the awful FEC so get where you’re coming from about the EC. Think it’s the Epirubicin that is the harsh one. Take care 💕
Thanks for your kind comments Sunnydaze 😘 I totally agree with you about the community spirit on these threads. I too really value the support and knowledge I have received and gained and not sure how I would have coped without this safe place. I hope your se’s start to improve soon. Have a lovely day 💐💕xx
Hi Gocat and Drummerswidow, like you breathlessness has been an issue and I worried about my heart. However, i noticed when looking at my blood results that my haemoglobin levels were always low. When I asked why was told that chemo damages haemoglobin, which of course carries oxygen around the body, so when we exert ourselves we become short of oxygen making us breathe harder. In extreme cases a blood transfusion is needed but for most of us it’s just another temporary SE. Hope that helps xx