glad you're not feeling too bad. Some of the side effects sound dire, and someone told me that his father, who had chemo, said the first one is sometimes not too bad, but then the second cycle knocks you out. Fingers crossed you stay as you are! I hate being an invalid. Not used to sitting about doing nothing!
Still no news on my kiver biopsy. I just want it over with and to get a definite result for once. Sick of not knowing and feeling totally helpless. It's like we have absolutely no control of the rotten situation we are in, at the mercy of the doctors who can't decide what to do! I feel all this time elapsing since surgery will do me harm in the long run, as it has the potential to spread unchecked at present. Thus life expectancy becomes threateningly short. Have they any idea what we are experiencing? While they pontificate and order yet another scan etc, we are going slowly round the bend! Nothing pro-active being done, when I feel we should have started the treatment weeks ago. I can't sleep due to pain and worry. It stinks!
Take care and stay well.
I had my hair cut short some months back in prep for neo-adjuvant chemo which never happened. Chemo has been delayed by ongoing scans etc, to the point I have had to get it cut again. Still waiting-now for a liver biopsy! God knows when I will get my treatment. We are just spinning our wheels waiting yet again. I sent 6 pigtails about 9"long to Little Princesses. Thought they could make better use of my hair than I. A very worthy cause.
Hi, Amy, will try that, thanks, xxx
Its great that you did that. I wish I had but I had my long hair cut to my chin in a bit of a hurry. What other positives have you found? I’ve met some amazing people already. Xx
@Lu_B Sounds like you are doing well. It probably doesn’t matter what you eat as long as you get some calories in when you can. I’ve been making smoothies quite a lot when I can’t face eating solid foods. I put in frozen fruit, a banana, handful of kale and some oat milk and yoghurt. You can’t taste the kale I promise! X
Yes I’m trying to write down how I feel. I’m really anxious about some pain I have in my left little finger so didn’t sleep well last night. I’m concerned it might already be the start of neuropathy which was my biggest fear as it could be something that would prevent me from doing my job again. I had that horrible thing where fear becomes enormous in the middle of the night.
Got up to take my daughter to a party and managed a very short run which felt nice to do, just being outside doing what I usually do albeit slowly. Just been back to bed for a nap though!
this is my chemo schedule and type as well. I am on day 6 of first cycle. Now I know I will be tired for a few days and need to pace myself. But already started eating more(need to rush and eat when I feel hungry). I am eating a lot of white bread and butter but has noodles yesterday.
Hi, I am trying to keep a dairy. Today is my 6th day after EC chemo and feeling super tired....
not much nausea and foggy brain....
Are you keeping a record/diary of symptoms so you can compare to your next cycle?
Sounds like you’ve had it really tough. It may well be something ends in your liver. It looked like I had a second tumour behind my first one but it turned out to be something called a radial scar. It’s the not knowing that creates the most anxiety- I really feel for you.
So, day two has been ok. Did a 5.5km dog walk this morning and family friends have been for the day which was lovely. They brought all the food and cooked so I didn’t have to. No specific symptoms as such although I occasionally feel a bit of a pain in my fingers or toes but I’m not sure if I’m imagining that. Just feel slightly odd, a bit disconnected or slightly spaced out. And a bit lacking in my normal energy levels. I had the second injection of filgrastim today. I took loratidine antihistamine a few hours before which is meant to reduce the bone pains associated with this and so far I seem ok.
I only took half the dexamethasone steroid today as my oncologist says that would be ok as long as I don’t feel sick.
So, take home message from
me tonight is that so far it hasn’t been as bad as I expected! Amy x
❤️HR25 it does help because you decide what happens to hair and when ❤️ and it helps so very much little Princs trust ❤️ lots of us have done over the years and others have had friends and family who did brave the shave donate theirs in support too ❤️💕💕✨✨Shi xx
A brilliant idea and I decided to do it after realising that I wanted to take control of my hair loss before it started.
I needed a haircut so had a short one and had my hair cut off as a plait and then sent it in. It’s a small personal symbol of my approach to breast cancer, I’ll find the positives to help deal with the negatives xx
❤️Do please consider little Princess trust for hair donation if you have enough length ❤️helps make a wig for kid ❤️ turns Negative of loosing locks into positive as goes to help a child ❤️ hairs not wasted then ❤️💕💕✨✨Shi xx
Hi Amy, Shi and everyone here,
I have had a referral for counselling and will see someone next Thursday. I think it will bw very helpful. They work out of the Magnolia Centre at York Hospital, who are treating me, so will at least know my case beforehand, and will of course be used to Talking to others like me. I just can't get any peace of mind at present. No news on the biopsy-sooner rather than later would be good! Went to see friend yesterday who are my support network. One whose husband had bowel cancer totally gets where I am coming from, and it's very useful to share his experiences. He totally gets it! We had a good discussion about the latest developments. Back on June 10th I had bloods taken in readiness for my surgery. These came back with an elevated LFT and low Vit D levels. Was on Vit D high stregth supplement for 9 weeks. Recent blood test is now showing everything is normal. I also had a full week of flucloxacillin for a post surgery tissue infection. We are trying to explain all this and are thinking I perhaps had, earlier in the spring, a inor liver infection, maybe eve a small abscess-the lesion is only 17mm-which caused no symptoms, but showed up on the June blood test. Maybe it is scar tissue theyare seeing and not a liver met? It can't still be an ongoing abscess as the LFT would be showing raised levels of white cells, etc. This conversation with my bestie has given me hooe that they have actually got it wrong, and maybe it is not cancer after all! 3 scans have not given then a definitive result. Don't really want this biopsy but hopefully it will finally give us answers and I can get on with chemo at last. The chemo may even change to a less harsh regime. Who knows? I will just have to keep waiting a while longer, and hope and pray it is not what we fear it to be.
So trying to view things from a different perspective now. Been doing some meditation and adding yoga exercises to my post surgery stretching. I want to be as fit as I can before it all starts, and have a bit more time to go and ride. My pony is being such an angel, she seems to know all is not well with me. Her whope personality has changed. From being a bolshy and impatient mare, who never wanted a lot of fuss, she is so calm, loving and kind now. They say animals have a sixth sense about illness like this and I totally think it's true. My equine therapy and pals at the yard are keeping me sane! Well, almost! Thought I was losing it Thursday! Funny how you feel all these emotions and they change on a daily basis!
Hoping the counselling helps with the anxiety, and perhaps puts me in contact with a group of people like myself-there is a Cancer Care Centre right next door which I am going to investigate.
Good luck to all of you. Amy I hope you are not feeling too ill from your chemo. I am dreading it, yet can't wait to get started with it!
Take good care of yourselves, Jane.x
So pleased to hear things went better than you were imagining, ( nice touch with the goody bag!)…hope you slept well and continue to feel ok.
HMLL….sounds like you are getting yourself well organised for next week, I went crazy and cut a chunk off the length of my hair, I feel by going to my hairdresser it makes it all too real ( ridiculous I know, but that’s were my mind is at the mo )….wishing you well for next week, will be thinking of you.
hugs to all xx
Thanks for the update. I’m doing Epirubicin and Cyclophosphamide on Thursday. Starting to brick it now, about to get real keeping myself busy organising so I don’t sit and think about it.
Had my pre chemo crop done yesterday and enjoying rocking some funky hair. Finally managed to get the old gels off my nails & used the cuticle eraser stuff last night, by massaging it in it avoided using traumatic methods to push the cuticle down risking introducing infection.
It’s the fear of the unknown that’s doing for me right now, 4 fortnightly cycles of dose dense EC with GCSF. Single parent of 3 & 5 year old and 6th birthday to sort day 3 of second cycle. Just whether or not I’ll be able to function anywhere near normal level is giving me the fear. But I’ll only know when I know!
Hi, so quick run down of my day.
it wasn’t nearly as bad as I expected! In fact I had quite a nice time.
my nurses were lovely, I was given a big bag of goodies from a lovely local charity when I arrived: hand knitted blanket, nail polish, face mask, mouth wash, bubble bath, lip salve, a fan - you name it it was there!
I had both Paclitaxol and Carboplatin today. Both went in fine. It was a bit sore when they accessed the port but I think that’s because it’s still a bit bruised.
I was there about 6 hours but that’s only because I had to take an oral med for my stomach 2 hours before the chemo and next week they’ve given me some to take at home.
When I got home I went for a short walk with the dog and had supper. I feel ever so slightly odd but I can’t work out if it’s just because I am tired. The only symptom I have is some odd little pains all over my body that feel like an occasional pin prick.
I drank loads and loads of fluids today so hopefully that will help.
Jane, that sounds awful I’m not surprised you are having trouble coping with the anxiety. Do you have something like Maggie’s centre where you could find a professional to talk to? I am having some counselling starting in a few weeks. The other thing I found really helpful is a book called mindfulness for health. It might not be your bag, but I found some of the concepts if it useful to help me cope with acute anxiety xxx
❤️❤️magenta 👭👭 please do try the someone like me service Breast Cancer Now offers and also use the number to speak to a nurse ❤️❤️ do go to your Pals office too and explain what’s happening with delays snd the waiting, they will investigate. Keep talking and reaching out on here too, others will be along with 👭 and any words of advise soon too ❤️ 💕💕✨✨Shi xx
Hi Amy and all the september group, I may have jumped the gun joining the September thread, even though all my appointments were scheduled to start next Friday. I had a liver MRI last Friday to check out the lesion that they believe is secondary BC. Result has come back inconclusive yet again. I am getting used to hearing this now: every scan has ben the same-"there is something there but we can't decide what it is". So PET/CT and MRI have given no definitive answer. Medic who interprets scan says he thinks it could be an ABSCESS!!! How is this when a LFT has come back completely normal? I have not got and have never had any symptoms of liver trouble. But I now need a liver biopsy to rule this out, when I clearly have no abscess. Blood test would not be normal if there was an issue with my liver would it? My team think this is incorrect but have had to postpone my chemo until I have had this biopsy and the results are in. Plus I need time to heal from that also. So I am looking at 3-4 week delay. Just losing it here. The stress is finally breaking me. I have an unusual and aggressive fast growing cancer and no-one is stopping it doing as it pleases. So scared. By the time I get my chemo, 3 months will have passed from my surgery. I know they need to get it right, but this seems an awfully long time to be left in limbo. Has anyone else had this happen with inconclusive tests and scans? So I am no wiser as to what is in my liver and now have to have an invasive procedure I could well do without.I am enough discomfort with scar tissue and cording issues after ANC. But they just expect us to accept everything they throw at us joyfully. This is not a trip I wished to embark on, and I feel like jumping off the boat at times. Will need a shrink before chemo starts at this rate! Trying to keep a sense of humour but really struggling now.xx
How are you feeling today Mrs Millie and Amy? X
Can totally understand the jittery tummy…..I’ve got it already just thinking about what lies ahead! Will admit to feeling totally petrified about the whole thing….fear of the unknown is a horrible thing……I’m imagining getting every possible side effect, can’t switch off from it.
Wishing you well for today Amy
hugs to all xx
I am quite similar to you. Clear lymph’s, oncotype intermediate, preventative chemo. My scheme is Epirrubicine+ Cyclophosphamide.
I am happy that letrozole is out for a bit though :).
I am on day 3 after chemo and a few symptoms ( nausea( never vomited), but tired, but woozy...). Headache only on first day.
I hope your chemo is mild.
Lots of hugs!
@amy46 Good luck today.
I have an appointment with my oncologist on the 22nd September so I'm presuming chemo will start some time afterwards. It could start in October and by then you ladies will be experts.
I too knew I'd be having chemo from the start so I've been able to read, plan and mentally prepare myself for it.
I thought 2020 was rubbish but 2021 has really topped it.
Hi to both of you. I’m up early today with a jittery tummy about my first chemo dose. Did they recommend you both mastectomy rather than wide local excision?
lauren, how are you finding it being on the other side of the fence? I’m finding it so strange. In some ways it’s good as I don’t get freaked out by hospitals etc and I think it really helped understanding what was happening and being familiar with the environment when I had my port put in, but other times it has been awful because I think I understand implications of things that maybe I’d think about differently if I was a non medical person.
It feels so strange to think that in a few hours I’ll be home again and waiting to see what effects I will get. Anyway, I’m off for a cuppa now and I’ll fill you in later about how I get on. I expect it won’t be nearly as bad as I expect! Amy x
Hi! I am basically the same. I had a mastectomy last week with good margins and cleared the nodes. I also am going to do chemo. I was told this from the get go so I have had time to digest everything and get my mind right. I had a good friend tell me (breast ca survivor 20yrs) that even if you don’t think you need it you can’t go back on that decision once it’s too late. It’s words I take to heart when I want to argue the fact. (I’m also an ICU nurse so I’m prone to that 😁) much love to everyone going through this
Hello to all on this thread,
I was advised preventative chemo after high oncotype result…..already had mastectomy 7weeks ago, surgery was successful in so much as clear lymph nodes and margins so was expecting to go straight to letrazole, so chemo a bit of a shock add on. Will be up to 12 weeks paclitaxel starting in a couple of weeks. Anyone else on same?
Sending good wishes to all x
Oh dear Amy, that is very frustrating for you! What reason did they give? And such a hassle having to reorganise everything else around it. Our lives just revolve around appointments these days. I am expecting a call today re my Liver MRI results. Just hoping it is confined to the one lesion. Fingers crossed for us both. And best of luck to all of you ladies on this thread.
You must be gutted x
Good tip re Polybalm thank you.
Just had a phone call to postpone my chemo from tomorrow to Friday. So fed up. Got stuff organised for the kids tomorrow and totally focused and ready to go. Had to cancel my psychology appointment and wig appointment that were originally scheduled tomorrow as obviously chemo most important. Hey ho. Another day waiting 🙄
yes it has been a very up and down experience, but now things are finally starting to happen treatment wise, I feel more confident. Getting my head around all the info has not been easy-there is so much to process! It just seems to have taken so long to get to this point, for which my Onc apologised. Because my cancer is quite unusual, they had to do more tests on tissue samples from my surgery to reach the conclusion the tumour was partly HER2+. Biopsies taken back in May had not shown either way. I suppose they don't want to give us inappropriate drugs given the side effects we get. Anyway onwards now!
I am trying to keep busy, and have a massive list of stuff I think I need to get before it all starts. Not sure what they give us on the unit as regards meds and self care but I guess I can ask at the first big appointment I have beforehand. I may be putting a shipping order in to Boots! Like you I like to be organised, and yes it makes you feel like you have some control of the situation!
Regarding nails, I have been using Sally Hansen nail strengthener which has now been on a week and still looks good, and a really good hand and nail cream twice a day. Fingers AND toes. On researching nail care during chemo, as the Docetaxel I will be on can cause serious problems apparently, I found POLYBALM. This is a special treatment you apply at least twice a day to the cuticles and nail beds. They supply 2 tubes, one for fingers and one for toes to avoid spreading infection, should it arise. It has been clinically tested on chemo patients and found to be really effective in preventing damage. Just google it and all the info is there. I got mine on Amazon as slightly cheaper-it still cost £37-but I feel it is worth it if I keep my nails. Some risk of losing them completely on this chemo and I don't want to go there. I have lost several toenails over the years-equine related incidents! It is really unpleasant and very painful! So maybe worth a try. I think they recommend dark polish as it can protect from UV damage? I will just stick with what I have and keep out of the sun-it's not good to be out in it long anyway while we are on chemo.
Your chemo bag sounds fine. I am thinking on similar lines, but may include something to nibble on. We might be there a while! Someone also suggested having a few items handy in case they keep you in overnight-some have quite bad reactions so I hear. Fingers crossed it's not us! So small washbag, spare socks & knickers and a nightie. Think I will need a backpack! But maybe best to plan for all eventualities
I am also considering supplements, in particular turmeric, black pepper and ginger, for joint pain issues. No idea whether it is okay to take while on chemo, or best to wait until it ens. Another question among the dozen I need to ask. All I currently take is Calcium with Vit D and K. But again, need to check it out. Otherwise I will just try to eat healthily-that is if I have an appetit and can keep it down!
We are still on the rollercoaster I fear. I think chemo will be a very up and down time. Just hoping it doesn't make us too sick-I think for me the sickness/nausea may be the worst part!
Take good care of yourselves everyone.
Mine is also TNBC. What chemo are you having? How are you coping? I was leery low and tearful a few weeks ago and just couldn’t lift myself out of it but now I’m feeling strangely ok. First chemo tomorrow so maybe it’ll hit me later today, but at the moment I feel fine. Amy x
Lou, good idea re socks and blanket as I noticed it was quite chilly when I looked around the unit on Monday.
I got a thermometer from Amazon but it kept giving wildly different readings so it’s going back and I’ve ordered a Braun one. More expensive but I don’t want to be wondering if it’s the machine or real if I get a high temp. Amy x
Shi, what chemo did you have? Did you keep your nails painted the whole time? Or just for a few days around the chemo?
How did you find the dexamethasone? Im
worried about not being able to sleep. I’ve got four days prescribed with only three days off before the next cycle.
Hi I m starting chemo in 2 weeks for triple A negative breast cancer. Will be good to chat on this thread.
In my chemo bag ive got some snacks, boiled sweets, note pad and pen, fluffy socks and a blanket.
Ive also read to have a little caddy/basket at home with everything in you need e.g lip balm, hand cream, ear thermometer, tissues so you don't have to wander round looking for things.
You need to keep an eye on your temperature too and ring if it goes up.
Thank you x
Amy put a phone charger in too 👍 in your chemo bag, it’s not something you think about but if you find a casa nhs stay you will need phone charger be you’ll be keeping in touch with your thread gang on here 👭 and you don’t want to run out of phone battery. All please be vigilant as you go into your nadir phases during chemo ❤️ Remember it’s not like usual you need to ring your rapid response teams ASAP and check things with them, things like uti, thrush, thrush mouth will need antibiotics not just stuff you’d use normally ❤️Always keep safe during chemo ❤️💕💕✨✨Shi xx
👍 Amy on drinking the water 👍 keep fluids flushing things through liver and kidneys 👍 💕💕✨✨Shi xx
❤️Dark nail polish helps preserve nails during chemo as sensitive to uv light and chemo can make them fall out, others have used a nail protector too, personally I used dark polish and kept all my nails, just lost few toe nail but kept all finger nails ok 👍 hope that helps 💕💕✨✨Shi xx
The chemo bag sounds a good idea. Why does the nurse suggest painting the nails dark?
Have a lobular ca grade 2, stage ?, estr+, herceptine - , no copromised limos. I had a full mastectomy( right) 25/6 and now started, today, chemo (epirrubucine+cyclophosphamide) 4 cycles (every fortnight). It was very quick in the hospital.
Feeling a bit of headache and nausea now but nothing terrible, but will top up meds now. Did my answer help? How are you?
Yes. I borrowed that book from the library. Very good. Good idea about the water, I must start drinking more. Just been wondering when to shave my head? Before it starts coming out, or when it starts falling out? I've asked my sister, if she would do it for me, I already have a bottle of processco in the fridge ready for the event. X
I have that book, one of them is a breast surgeon herself I think which is pretty bad luck. I also found it really useful.
You may regret saying your girls could glitter tattoo your head! When my children were that age they went mad for the glitter tattoos! The whole house was permanently glittery!
So we are having the same drugs but in reverse. Having the Paclitaxol first seems to be a bit unusual not sure why my oncologist went for that way round. I’m going to be having three injections of the drug to boost white cell production each week too. Anyone else having this? I’ve got such a long list of meds and supplements I’m going to be rattling around!
I started practicing drinking at least 2.5 lites of water per day yesterday and seem to be spending half the day nipping to the loo! Amy x
It sounds like a complete rollercoaster for you. So hard when you don’t know what’s happening. I think it was one of the worst parts for me - the results never seemed to all be there and a decision made and I was beside myself with anxiety waiting for things. I think compared to many the process was actually really quick for me so I’m lucky but at the time it didn’t feel quick. I’m a real planner and I like to be in control so I feel a lot better now that I have dates/drugs etc to work with.
I have loads of stuff I could and should be getting on with but I really can’t be bothered so i am impressed you are so motivated!
I have a chemo bag with the following but would welcome any other suggestions:
Colouring book and pencils
Book they gave me to document my treatment and any side effects
Phone and headphones
The nurse I met yesterday said it helps some people to paint their nails a dark colour, anyone else going to try this?
I am also taking CBD oil to help with side effects and a few other supplements. Is anyone else trying any alternative therapies?
yes it seems like we have had a similar experience with the HER2 tests. So we would both have had our chemo before surgery had they had a cear result. Can't be sure but it could have made a difference for us. Most of my results were confirmed a week after the May 6th assessment waiting longer for HER", then inconclusive so retested with the same result. My surgeon had pushed for upfront chemo then on June 4th at the oncology appointment it was a complete reversal! Knocked me for six. Sent away in a daze with no idea what was going on. My BCN rang on the Monday to see how it had gone and couldn't believe it when I told her! Surgeon was most put out and with the results from my MRI we just went ahead with surgery, whch was on June 22nd. So it caused delays to that too, as really we may have just gone straight ahead with it to begin with. In all it will be more than 4 months from diagnosis to getting the chemo. And all that time you have a cancer whch they know is an aggressive and invasive type just dividing and multiplying wherever it wants. So it is now in my liver and could this have been prevented if my surgeon had got her way. Who knows. I do know that it's not going to go away and I will be on treatment for life. This is not a knowledge that gives me much cmfort as it is just life changing stuff. Dreading it, but it has to be done! Just waiting to get started and for Liver MRI results and some biopsies from a strange lump near my axilla to come through. All the waiting as you say, and not knowing is very wearing.
I am trying to get stuff sorted out at home before it all kicks off. All the little jobs that you keep putting off! And sorting out the myriad items I will need to have to get me through the chemo-I found a marvellous post ion here with some great tips for coping with it, so am using this as a guide.
Hope all goes well with you. Think it will be a relief to get started and know that we are actually fighting this monster!
Best wishes, Jane.x
Hi everyone. I start now-adjuvant chemo 2nd September, 6 weeks after I had my 2WW results. Triple negative, awaiting BRCA results, awaiting further biopsy results of another area of concern seem on MRI same side.
Really helpful book “The Complete Guide to Breast Cancer” written by two doctors who have had it and been treated. I have LO’s who are 3 & 5 and there’s a great book called “is it still ok to have cuddles” as well as “mummy’s lump”. One that was good for my friends older kids is “cancer party”.
Have had eyebrows monoblade-ombré, off for second look at wigs tomorrow. Have probably unwisely (!) told my girls they can help me do glitter tattoos on my head when I’m bald. Not going for cold cap as don’t want the extra time in the unit.
Trying to cram in as much fun and fitness in as possible before treatment starts. Will start with Epirubicin and Cyclophosphamide fortnightly for 4 cycles then switch to weekly Paclitaxel and Carboplatin for 3 months.
Good luck to us all and hope this is a safe space to talk about the hard stuff as well as the good.
Good luck for Thursday. My first one is on 1st Sept. I would have liked the port, or picc line, because I have had a axillary node clearance, so cannot have any injections in that arm x
I’m having the same but in reverse. I had my port put in today and it wasn’t anywhere near as bad as I expected. The local was a bit stingy but then it was just a bit of pressure and wiggling around. I didn’t have any sedation so i could go home straight afterwards. It’s a bit uncomfortable now but not too bad at all. The actual procedure took about 20 minutes but I was in the room about an hour in total. Didn’t even have to take my shoes or trousers off!
Just putting it out there in case any of you are having one. I was really anxious beforehand but it was genuinely fine 😊
Start my Paclitaxol on Thursday so hopefully that’ll be better than expected too x
It sounds like you have really been through the mill. I had a similar experience with equivocal HER results from my biopsy on both tests and the same initially from the tests they did on the tumour itself. If they had known initially I’d have had chemo first then surgery I think.
Hopefully you’ll feel better once you get going on the treatment. I think the waiting and not knowing is the hardest part.