Hope all of you December ladies are doing ok. Some have been very quiet for quite some time now.
Im 8 days post 2nd Tax (5th of 6th Chemo) and feeling the aches and pains. I’m convinced it’s more to do with the Filgrastim than anything. I’ve had 5, 2 more to go this cycle!
Had an MRI yesterday, presume I will get results when I next see consultant.
The radiographer said I had such lovely shiny hair! She apologised profusely when I told her it was a wig. My hubby said I should have whipped it off and handed it to her😂😂😂
My taste buds are even more dire this time...shame really because I am actually fancying food and imagining what it should taste like but it’s so awful when I eat or drink anything. Don’t think I’m drinking enough because of it! Need to still get a bit of weight back on too, to build up my strength for upcoming surgery. Hope you all have the best day you can and good luck to anyone being poisoned this week xx
We all seem to be suffering especially on the Taxol. Your taste will probably come back soon after finishing . Toenails are more likely to come off, ( in my experience as a foot lady). Fingernails can become flaky. I had a gel polish put on yesterday. 1 to cheer me up and 2 to keep my nails stronger. I have been told to take co codamol forpain but i’m on anticoagulants so neurofen and naproxen is not a good idea.
Glad if you can manage a glass of wine. My liver function tests were a bit out of kilter and alcohol makes me feel unwell.
I’m having my Taxol once a fortnight on an accelerated dose but it’s been postponed for a week as I’m not well enough.
I have my second T tomorrow. So pub lunch today and with extended family and cheeky glass of wine! I am interested in the recent comments about nails feeling funny. I have been wearing dark purple nail polish since I started T (apart from 24 hours when I did not get around to reapplying). Really don't want to lose any nails and to be honest not sure a bit of polish can prevent if it is going to happen even if it does block sunlight. Has anyone lost nails?
I would say I have lost a bit of taste sensation but nothing as bad as some of you ladies.
I asked my oncologist what is best to take for bone pain as had it bad last time, she said probably ibuprofen or naproxen.
Feel like the end is in sight, only 3 weeks until last treament this PIC line is removed, yay. Hang on in there girls! x
Thanks for your replies - like everything else, it seems to vary for us all. Bread, biscuits or cake are definitely inedible, everything else is hit and miss ( mostly miss). Wouldn’t mind so much if weight loss reflected lack of food, unfortunately it doesn’t seem to work like that!!😩😩
I would also love to know when tastebuds will improve - anyone else out there with an answer? Guess it will be very individual basis. Have made a coffee and walnut cake this pm with a mousseline topping and filling. I tasted a bit. Wish I hadn't bothered.
Hubby loves it, of course and gave a piece to my two nearest neighbours. Don't want hubby to put on too much weight!
Marmite is bliss at the moment for me. Lots of savoury foods just seem to clog up my mouth! All very weird.
Take care and hopefully your taste will improve with the end of T. x
Had my 2nd T last Thursday. Feel so weak today. Im sure it wasnt this bad 3 weeks ago after 1st T. Also got numb tongue. Some foods are tasting not good. Normally love an apple but not tasting good today. Back to the carbs and jacket potatoes I guess lol Finger nails feeling a bit strange too. Got dark nail varnish on them, so hopefully wont go brown and fall off. 😮
Got 6 jabs to do this time. Last time it was 7. They didnt put when to start them. Im guessing its today.
Had my second T on Wednesday and have noticed it’s hit my tastebuds really quickly this time. I feel hungry but everything including water tastes absolutely awful! I felt quite good the first 3 days, steroids again I guess but the tiredness has taken over big time today and feel quite down! Good luck for your final session on Thursday, yes the end is definitely in sight 🤗
Hi Daffydilly, I will have 3rd and final T too next week and my taste has recovered from 2nd already. I am, like you, increasingly tired though. My nails are a bit sore but it doesn't look like they are going to fall off and my hair has started to grow back on my head but very thin and fluffy.
Hope you are managing to enjoy this lovely sunshine.
For those a bit ahead of me with fec-t, how long did it take for your taste buds to improve after T? Am due my 3rd (and final) T on Thursday but still struggling with taste/ texture of food and drink from last session. Much more tired this time too so guess that will be worse for next few weeks . Still end of chemo insight so nearly there.
My furry nurses are cute but I might be biased.
I had heart problems before but had an ablation which stopped my Atrial Fibrillation. Since having the Paclitaxel I’ve been having problems. Hoping when I stop the chemo it will go back to normal. Seeing Cardiologist at St Thomas’ end of June.
Heard from the chemo unit today my next chemo is being postponed for a week. Seeing the Oncologist on Thursday. Feel so terrible I’m pleased that it has.
Know what you mean about chemo brain. I forget what I’m saying halfway through a sentence! Hope you are doing okay xxx
Interesting what you say about link between liver probs and gallbladder removal. I also had my gallbladder removed a couple of years ago! That’s a bit of a trek for your rads made worse by the queue for the car park. Yes I inject myself daily with the Filgrastim. It’s a very fine needle so not a problem. No date for surgery as yet! I got away quite lightly with side effects from chemo first 3 days, but today, day 4 things have really kicked in! Hope you enjoy the weekend. Hugs 🤗 xx
Photos so sweet! Hope you have no further worries with your heart. Were you tested before you started Chemo? Was it already an issue? Sorry feeble brain can't remember. Apparently, I read recently that short term memory loss as well as difficulty concentrating are yet more common side effects with Chemo! Even our brains don't escape from those toxins!
Cuddle your lovely furry nurses! XX
When I started Chemo (seems like years ago!) I queried liver damage possibilities with Oncologist. He said, "Your liver is damaged anyway." Very dismissive.
I've had liver issues ever since my gall bladder was removed a couple of decades ago. My mother (now departed) had same thing and started at same time - after gall bladder removal. Neither of us was/are drinkers! Even Hepatology have said that in a percentage of cases (quite high) they don't know why patients have cirrhosis. No hereditary link has been proved so far though.
I have 15 sessions of Rads to come - every working day for 3 weeks. At least I get weekends off! That's a round trip of 60 miles every day for up to 15 minutes maximum of treatment, or so I've been told. I think the car will know the way if it doesn't already! We always have to allow 2 hours to get there - traffic - and also you have to queue for parking (usually takes 30 minutes to get into a carpark).
I could have had Chemo at the cottage hospital only 5 miles away if the waiting list wasn't always so long that I will be finished with it before there's a space. Why or why can't they do Rads there, too? At least there's a drop in centre there for patients and relatives once a week - you can talk to experts.
Have you got a date for surgery yet? Is the Filgastrim daily - 7 days of it? And do you have to inject yourself with it? Not sure I could do that!
Hope you have a good weekend - what's left of it. Well, because of Steroids we all get plenty of hours to amuse ourselves on those days, don't we?
Hugs and good wishes. X
Glad Chemo 5 went ahead for you. Hope you’re red blood cells come up and the breathlessness improves.
I go through stages with jacket potato and cheese!
sorry to hear about your AF. Hopefully the reduced dose of Pax will calm things.
You’re furry nurses are so cute 😁
good to have another chemo down. I had another restless night last night. You think you would get to catch up on sleep in the day but steroids don’t seem to allow it. Oh well, finished them for this cycle now so will hopefully change. I start 7 Filgrastim tonight though so will probably have usual aches & pains!
Hopefully the chemo hasn’t caused any further damage to your liver!
Do you know how many sessions of rads you’re having?
Take care x
Had my 5th chemo yesterday. Was told my red blood cells bit low and probably why I have been breathless when going for short walks. Will have to try to find foods high in iron that are not meat, as totally gone of meat at the moment. Been living off jacket potatoes lol. Only thing I really fancy.
Other than that, no problems. Bit high on the steroids like some others have said. Got about 2 hours sleep and got up extra early and plodded around the house doing bits of housework. Still dont feel tired.
Was half way through my treatment yesterday, and realised they hadnt put the cold cap on. Oh well just have to wait and see if my remaining hair falls out now. Was getting very thin on top and had to wear a hat when going out anyway. Past caring about hair now. Just want all this finnished.
Been out for short walk with the dog. Bit breathless and some minor back ache.
Huggs to everyone xx
Hi All. We all seem to be struggling at the moment.
Had my pre chemo check and nearly got myself admitted! Trouble breathing, back into Atrial Fibrillation, which i’m gutted about, feeling so tired. Ended up with ECG, Acute Oncology Nurses chasing my blood results and my CT scan results. Apparently I’m on a really high dose of Placlitaxel. I can have my chemo Monday but it will be a reduced dose. If I continue on the high dose I could become so ill they would have to stop it completely 😳😳. It’s possibly affecting my heart as well. So off to GP re heart problem and a lower dose on Monday. They sent me home but with instructions to contact them if I have any more problems or feel worse.
Me and my furry nurses are not going far this weekend. Hope you all have a reasonable weekend x
thanks for your good wishes. I have problems with sleep, too, like the others. Complicated by restless legs etc. which drive you mad. I have taken over the counter stuff like 'Sleepease' from Boots, but all these things are mainly antihistamine based, which I take daily anyway for skin problems, so no point in overloading on those - they give me restless legs if I have extra tablets.
Have you got surgery or Rads to follow next? I have Rad preparation on Monday. I'm going to get 3 tattoos as markers. Never thought I would have a tattoo, let alone 3 of them! They're only tiny really. It takes about a week to analyse all they will do on Monday to get everything absolutely accurate and precise for the actual sessions which will start in May. More fatigue.
Diagnosis September 2018, Surgery mid-October, now Chemo and I am 7 months down the line from starting point. When will I get my hair back? That's what I want to know!
Don't mind my moans, just letting off a bit of steam. Hubby keeps me sane and laughing.
Take care all of you lovely ladies. Lots of hugs. XX
Poor you with all those canullation problems, plus liver worries and looking yellow!
I had my 5th Chemo yesterday and the oncology nurse said it was a good thing I only had one more to go as I haven't really got much left in the way of veins! So far, so good though.
Last night was dreadful, as for you, and I gave up after about two hours and got up to do some crosswords - would you believe - more brain stimulation? I took a couple of paracetamol as a sleep aid which sometimes can help.
However, on return to bed I had resless legs, arms, you name it. Very uncomfortable. That also went on for a couple of hours. I dozed off in the end - got about 1 1/2 hours, I think.
Still haven't flagged today - maybe that's because I'm still taking all these steroid pills - that's basically what the anti-nausea ones are really, I think. After 4 days I will be off all of them and may get more sleep.
From 4th Chemo I have had a lot of back and hip pain, I think I mentioned that. On our recent short break away, just idling around looking in some shops on one day, I found after 30 minutes I was unable to continue. Had to stop, have a coffee and a sit down, and returned to car! As I am so near the end of the Chemo cycles now, I suppose I just live with that and hope it will all disappear.
As to liver - no-one ever tells me anything really about blood tests, except in the most general terms. I came into this BC diagnosis and treatment already suffering from early stages cirrhosis. Now I'm just told I'm OK for Chemo.
However, Hepatology, at same hospital but obviously different department, are giving me a routine, monitoring phone call consultation shortly (no more face to face from now onwards with them, after twice a year for the last 4 years + ultrasound scans) and I have to get a blood test done at my GP surgery 5 days before the phone call. So, I'm hoping that hepatology will actually tell me something! Chemo is harsh and does do damage. Hopefully, most of it is temporary.
Can't quite come to terms with after all this that we face Rads, too. Am at a lowish point.
I'm sure your liver question will be resolved and you'll be fine as no previous history? Take care.
i have 6 cycles of fec, so guessing the dizzy spells are with me for some time yet.....also.... isn't it the fec that makes you hairless? Coming up to my third....but lady garden and legs still intact.....how does that work???
everything crossed for the 26 th, the gremlin is wounded!! Little bugger....it's odd...I had my tumour removed before chemo, however on the last two cycles I have felt a definite ache where it used to be....makes you wonder doesn't it?
I think your all amazing, I dip into your thread for tips and advice....solidarity sisters xxxxx
Thanks for that, worth a try! The dizzy heads are awful with Fec. Have you just got one more FEC and then moving onto something else, sorry can’t remember...chemo brain 😜 You are doing really well! On a positive note I noticed some hair growth on 3rd Fec. I have hairs on my legs now and lady garden, quite fine so reluctant to shave. Mostly wearing leggings/jeans so getting away with it at the minute. It’s fab that you have such an active supportive group. I’m trying to keep up and offer words of wisdom when I can with being a couple of months ahead! I’ve got an MRI on the 26th to see if the blighter has shrunk. It feels different in shape, flatter now but not sure if that means smaller! Then it will be discussions about surgery, decisions decisions. Whenever I ask about how many lymph nodes are involved just keep being told multiple so guessing that’s code for lots. Love and hugs 🤗 xx
just jumping in here, I too struggle with sleep, my onco recommend herbal nytol, it doesn't work every night but on the occasional night I do sleep really well, not sure if it's the nytol or not but willing to carry on with it..just in case..
currently struggling with the dizzy heads..I'm on fec....hope it stops when it's all over....xxx
The lack of sickness and dizziness is one of the best things about T. At least it’s only 3 days of the steroids so hope to get back to normal soon. Yes I am reluctant to take anything to help me sleep but might consider it if it does become a problem. At least I can nap in the day if needed. Hope everything is ok with you 🤗xx
Hi all. I went to Look Good Feel Better workshop, I can recommend it. I put on make-up every day anyway, so I have my own routine, but I didn't know how to do my thinning eyebrows and I learnt that. Also an excellent goodies bag to take home! It was a bit confrontational though, to be in the company of other women suffering from cancer. I had a few 'is it really me sitting here' moments. On a positive note, breast cancer does not seem to be the worst kind of cancer, you can live and function without breasts and the survival rates are relatively high.
Good luck with the sleeping DiKat. Steroids keep me awake as well, will be on it next week again for my sixth and final chemo cycle. I found I slept through the whole night after a one hour reiki session on day three, which really amazed me.
poor you. I hope you manage a power nap today. I was given lorazepam last round of T because they gave it to me with FEC for sickness. I told them I was worried about sickness with T so they gave it to me again. Anyway, I wasn’t sick at all with T, but taking it , is good because it knocks me out and I get a good sleep when on steroids. I know you struggle taking different meds, but just wondering if there is anything you can take to help with sleep?
Good luck with the side effects this time round Dikat, Go Cat and Marykamille . We’re all doing great👍 . One last push xxx
Good luck to gocat and maryKamille today. Hope all is well with your bloods and your treatment goes ahead and goes well. Will be another ticked off 🤗
Blooming steroids. Awake since 2.15, didn’t go to bed until 11.15! Even yoga Nidra not helped to get back to sleep so gave in and got up at 3.15. Going to be a long day.
I asked the nurse about it this morning and she said to keep an eye on it as my liver could be playing up even though my results are ok. Still at hosp having chemo. I’m like a pin cushion, veins not playing ball so had to have 5 goes at cannulating today. Nurse said it can be around a year for them to recover, says it’s the FEC that causes the most damage. Hope all is ok with you x
You won't relax until you check it even if that is after the special birthday tea and the glass of wine. Hope you are feeling OK at the moment. You don't need the anxiety to add to it all. Keep safe. XX
Will ask tomorrow when I go for chemo if they think I look yellow and will ask to check that my bloods were ok. That’s scary nearly getting someone else’s batch! 2 of the nurses always check mine in front of me 😘
Hi dikat, for your peace of mind please speak to your team. I’m sure all is ok but just double check. I was waiting for my chemo once and they’d got someone else’s batch lined up for me😳so don’t be afraid to query things 😘😘💕💕✨✨Shi xx
I hope all goes well for you on Thursday and things are easier for you this cycle. I’m stressing now because my skin looks yellow. My hubby told me I looked yellow and my son has just walked in from school and told me the same. My Onc said my liver bloods were satisfactory yesterday. I asked about them because I noticed they were high and out of range on my discharge paperwork when I went to A&E with chest pain. Anxiety kicks in again and gone is the slight positivity I had yesterday 😢 Oh well, going out for hubbys Birthday tea soon so will try and paint a smile on my face! Was going to treat myself to 1 glass of red wine but not sure if I should now. Xx
My turn on Thursday, too.I don't get blood test results until the day either. Go to local medical practice on the day before and they take the blood. It goes to the hospital for analysis and the results are always there by the time I go in for Chemo on the following day. Actually, a recent query with my local medical practice revealed that none of my blood test results had been forwarded to them since last December when I first started Chemo! However, they said they would chase up their copies of the results and I did get a call back from a doctor.
In my area, once you are under the hospital for something, according to the Chemo nurse, the GPs don't want anything more to do with it.
Yet we are meant to contact the GP for help with SEs and to be fair they did sort me out with oral/liquid morphine for pain during my first and second Chemos.
I don't understand why none of the systems seems to be in contact with the others. It's all on computer now and surely only requires the press of a button or the click of a mouse?
Hope all goes well for you, Dikat, tomorrow. Hope the 'quiet' period is only that many of us are finding it harder with cumulative effect. When I say 'only' .... you know what I mean!
Yes I do like the system at my hospital. I always have to have mine taken at pathology in the morning on the Monday and then see the Oncologist later the same day and he always has the results back so I know exactly what’s happening. I’ve not had to have a picc so far and keeping my fingers crossed that’s the case for the final 2 although it has taken a few goes to cannulate at times. Good luck for Thursday x
Good luck with T on Wednesday DiKat. Will be my turn on Thursday.
Good that you know your blood results before you go.
I have my bloods taken Tuesday by district nurse who comes round to flush my picc
But dont know the results till I get to Chemo unit on the Thursday.
Good luck with chemo5 Dikat. I’ve got another week to go, just dealing with the “bloody nose” bit. I hope your lump has shrunk. My tumour was also mixed in with breast tissue, it’s difficult to assess the size, but I had an mx anyway.
Almost there Dikat, final chemo after this one?
Bloods ok so cycle no. 5 on Wednesday. Discussed all my side effects and all normal so getting the full whack again of Taxol. The Pertuzimab and Herceptin are lower doses as the first dose is always higher as loading dose. Onc said the lump has changed shape, it’s flattened and mixed in with other breast tissue. I’m having an MRI on 26th so he can get a more accurate picture. He said I see you went to A & E with chest pain last cycle. I said yes, I thought it was muscular but as it had gone on for 3 days thought I better get it checked out in case it was cardio or blood clot. He said if it had been blood clot I would have been dead after 3 days! Moral of the story ladies, get things checked immediately.
I asked why some people get 4 THP if having surgery after chemo. Struggled to understand fully what he was saying but the gist was that locally we follow a protocol based on a clinical trial and different trusts may follow different protocols.
Hope everyone is ok, some have been very quiet for a while xx
Glad that you have managed a nice break away. I’m going to try and arrange something between my last chemo and surgery.
Know what you mean about the back and hip pain, I’m also feeling it down my right leg. I’ve got bloods tomorrow so all being well will have my 5th cycle Wednesday. Hubbys Birthday is Tuesday so that’s worked out well, will be going out for tea and a glass of vino. Thanks for the info re surgery and good luck for Thursday xx
Hi DiKat and all you other lovely ladies
It seems that Gocat, Drummerswidow. Wahini and others are having a really hard time. Hugs and good wishes to you all. I hope you are all feeling better mentally about the future but it's so hard because it is the unknown for all of us really. I don't think any of us are that confident about our 'teams' at the moment. Perhaps that's part of it, too.
Just got back from a short break away which has helped. I would recommend it - a long weekend, anything really - because it can just slightly shift your outlook. Mine needed something. Fatigue is setting in so hard now, along with back and hip pain, and I am dreading my 5th Chemo next Thursday. Before that I used to be almost glad to be knocking off another one on the calendar but Chemo is definitely accumulative with side effects.
For those who haven't had surgery yet - I had mine first before anything else - maybe this might help.
A friend's daughter-in-law had her diagnosis the same week as me and she had Chemo first. She's now had surgery and then it's radiotherapy. Many of you seem to be following the same treatment pattern. She suffered worse SEs and for longer each cycle than I have. Her targeted Chemo did not reduce her tumour and this is not uncommon. It did 'split' it up into 3 parts and they offered her less drastic surgery as it would have been possible to remove only part of her breast. Suzie chose to have the complete mastectomy to be on the safe side (there's cancer in her family). She may go for reconstructive surgery in a year's time. She is one of those who doesn't query her treatment and finds that helps (we have discussed things) as it enables her to be positive nearly all the time, but then she hasn't had the complications that so many here on the forum have had.
At first, I didn't want to know all the details and range of outcomes (you all seem to have far more information about that than I do) but I think as we get nearer the end of each treatment we are not just dealing with what we are going through but focusing more on what happens at the end of all this. I think inevitably that is making us all take a dive mentally and it is perfectly understandable.
Maybe we should try to trust more? After all, our teams are working for our benefit at heart, aren't they? Just a thought.
Wahini I can understand you having a mental dip re the future, especially as you have been here before. I agree that you need all of the information before you can make a decision about the radiotherapy in light of this article so hope they will be forthcoming.
My Oncologist is pretty straight talking. I think he would be honest and frank. Normally I want to know every detail and fact but have kind of put myself at the mercy of the experts in terms of the chemo. With surgery to come next, I will want to know as much as poss from the breast care team as feel this is where I will have choices and need to make informed decisions.
I am sorry to hear your cancer came back as TNBC after all this time gocat. This article doesn't say if a tumour can mutate from one class to the next but I understand your concern.
You bring up a good point. Should I pass on radiotherapy now so that in case it comes back later, I still have a weapon in my arsenal so to speak.
I am sorry to hear your cancer came back as TNBC after all this time gocat. You bring up a good point. Should I pass on radiotherapy now so that in case it comes back later, I still have a weapon in my arsenal so to speak.
Hi DiKat, I am ok physically, thanks for asking. Mentally I am in a dip because as the end of chemotgerapy is nearing (sixth and final one in 1,5 weeks time) I start getting concerned about the future. My team is not very forthcoming with explanations, they seem afraid I am going to sue or something or submit a formal complaint, while I would just like to know some answers. How can I decide if I want radiotherapy or not if I don't get the whole picture? I would accept a 'we don't know' answer but maybe that is too much asked from medical doctors? How is your team about discussing your case? or do you not want to know too much? Next week I will go to the look good feel better workshop, I look forward to that.
Interesting article Wahini. I first had breast cancer 2009 oestrogen one and was on tamoxifen for 10 years. But in the 9th year which was last August, was diagnosed with TNBC in same place as previous breast cancer. Its classed as a new primary but now I wonder if its a relapse. I cant have radiotherapy again as had it previous time, so I worry this could increase my chance of another relapse. Hoping the FEC T blasts it all away tho 😮
Will be interesting to learn what your team have to say on this one Wahini. How are you after your latest treatment? X
This article shook me up, although it is progress in breat cancer research. I am now convinced the molecular wiring of my tumour is such that I will relapse because it already came back once, I think (I am not sure exactly what happened and if it is the same cancer, I will have to discuss this with my team). https://www.bbc.co.uk/news/health-47553534
DiKat, yes it was added due to my presumed, now confirmed Brca status.
Funnily enough once they knew about the clot they were unconcerned about my heart 😂 x
All sounds scary stuff with your heart. It’s so difficult with all these poisons to know what is causing what!
Hope the T is better for you. So far, I prefer it to FEC. Is Carboplatin another chemo or a targeted therapy? X