Hi Chris , yes I'm same day as you , I seem to recognise a pattern to my side effects first week wooshy and wobbly , no taste , digestion problems , 2nd week sore mouth / gums , watery eyes but taste comes back , 3rd week my tonsils really hurt sinuses get Inflamed I get a bit chesty ( I have mild asthma) and I'm tired.
I am starting to get a bit nervous as it's my last EC , next its carboplatin 3 weekly but weekly paclitaxel and my arms still hurt from the last two EC's ,i am going to ask about a PICC as my veins wont last I'm sure . Plus the weekly regimen worries me a lot plus the side effects specifically peripheral neuropathy ( tingling in the extremeties) I'm also scared i dont have recovery time , is anyone else weekly Pacliataxel?
I was given a chemo record at the start of treatment and my bloods get written down, I was also enrolled into the national patients know best programme so keep an online journal there is anyone else on?
So plenty to discuss with my onc on Tuesday .
Well done on the weight loss Chris I need to get in to shape once this is finished although trying to eat a bit better though once I get taste back I just love food and over indulge lol
Best wishes to all KC xxx
Well been taken out for lunch today with my sister and her wife to a lovely little restaurant for Sunday lunch and have to say the lamb was beautiful.
Viv - Helen no the weight loss isn't just from the chemo I actually started the keto diet when I was diagnosed late September, so its staying away from carbs mostly. I have been trying to stick to healthy eating, but have went a bit overboard during the Christmas when I actually could taste things.
I am really happy about losing the weight as I really needed a kick up the back side to lose it before I was diagnosed. The only problem with losing it is that I have to buy a lot of new clothes, but waited until the sales were on. I was also doing a lot of walking, which I wouldn,t have dreamt of before one weekly dance class was my fitness regime
Deb so glad you have gotten positive news around your tumour on your spine, I bet you were passed yourself before hand, but its great news that they can operate
KC I know that your next one is Tuesday same as mine, hope all goes well.
Viv when you mentioned bloods I looked at my book yesterday and there it was on my 1st session, but nothing filled in for my second.
Yes I love my purple book, ha ha. I need to know all facts.
I have US and mammo next week but onc said not to be dissapointed if I don't see any change!! Apparently bivger shrinkage with d/h/p.
I sit asking the nurses a million questions whilst they are injecting me. Going to miss my chats when I get the drippy docitaxol. Yes please let us know how it goes Debs!!
Day 1 after chemo and managed a shop, some cleaning and made tea.. making the most before my drop in a few days time...
Yes Chris that seems alot of weight, are you eating enough or has it been all the viruses and hospital visits?
I too am eating alot of monster munch on my good days, my crisp of choice at the moment for some reason...
I will def have to go on a diet at the end of this!!
Love and hugs xx
How quickly have you lost the weight...not since you have been on chemo? That would be a crazy weight loss, so I hope not ❤.
It is so hard to eat when food tastes rubbish...just wondering if not eating enough calories will make you more ill/ have more side effects? Perhaps even having a body building shake may give you nutrition without having to eat.
I want to lose some more weight this year...especially before DIEP if I decide to have it ..but don't think my chemo crisp addiction is compatible!
Love and hugs xxxx
I have had a 2 week delay to wait to get my PICC line back in - not sure if it was the right decision, but on the plus side, I feel great! It is reassuring to know that your body comes back to you. I now have my last FEC on 10th and start docetaxol on 31st Jan. My neighbour who is a health professional, said I should push for a central line...as this is the third PICC insertion and it clearly isn't working for me.
What is annoying is that my eyebrows and eyelashes are getting patchier despite no chemo...looks like I have had an accident with a tweezer whilst drunk!
Viv..I am not surprised you get better info in Scotland, And I love the fact you have a book! I saw my bloods last time as they asked me to carry it to the Onc! Otherwise we are shown very little...I find it really frustrating as I am clearly a control freak!.
Debs..So glad the spinal blip is treatable...you have obviously done well to catch it in time..must be a massive relief!
Interesting that chemo is making your tumours softer, and great that something is happening so there is a gain for the pain!,...I presume you all get scanned as well so they measure shrinkage?
Good luck for next week Debs...tell us how the docetaxol goes xxxxx
Glad you got answers Debs, think it def makes a difference psychologically!!
My Docitaxol is on the 30th, think I am having a 4 week break in between this time. I have it over 2 days. Herceptin and Pertuzumab (targeted drugs for HER2) on 29th and Docitaxol on 30th so they can separate any allergic reactions...
Yours is very soon??
I ate a whole box of chocolates yesterday before my taste buds went away 🙈🙈. Very healthy....
Lisa thank you for caring about my bloods 😂😂. I thought everyone would get a little book with stuff in it. Maybe a Scottish thing? I always want to know everything and almost asked if I could look at my file today. I see my Onc on 21st so will have questions then.
My breast def had a hard large area which has gone soft but mine invasive as opposed to actual tumour so can feel tissue...
That’s really good xx
Hope you don’t have to wait too long to see the surgeon and they can book in to get the little b*gger gone asap xx
She did ask if I felt ad if it had shrunk -
im pleased it’s just one on my spine and delighted they think it can be p**d off with surgery
Felt I got some answers today x
That is good news that it’s softer - I wonder how they can tell; the density maybe? How are you feeling about today? Sending you a hug 🤗 xx
The taste in my mouth has been worse with each round Chris and on day 8 today everything still tastes yuk. I’m going to enjoy food soooo much when this is over; I’ll never take a taste for granted again!
Well done for chemo no.4 Viv. It feels like only yesterday we were all introducing ourselves and someone said “it will go quickly” and I didn’t believe them! And now you are knocking on the halfway door and that’s brilliant 😊
I’ve never been told my blood figures, but I might ask next time. Yours sound good and we are impressed even if your kids aren’t 😘
Hope hubby is feeling better soon.
Oh Chris, that must be really tough for you guys 😔
I only have EC and although everything tastes like chalk for 10 days I don't get any wierd metallic taste, that could be the F?
I have a little purple chemo record book that says what treatment I am on and for each cycle they fill in my blood counts and what drugs I get. Supposed to take it with me when I go out incase of emergency...
Debs that is such good news it a single growth and thaf they can operate (well not that you have to have one but that tbey think they can remove it!)
I have scan next week. Mine is def softer. I had a large hard area of about 6.5cm and now feels no different to other breast. I will take softer means a good thing even if it hasn't shrunk yet!
Was talking to nurse about docitaxol and how many people have a reaction to it 1st time round... crossing my fingers...
Seen the consultant today at the half way point
Definitely only a single cancer on the spine, they’re thinking of operating to remove it before the breast surgery. Have to see an orthopaedic surgeon in the next month to decide if they can. She said the breast cancer although it hasn’t reduced in size is softer - a good thing!)
Can any one advise I am due my next lot of FEC (and last one of them) on Tuesday and I still have a horrible taste in my mouth, does it go away at all?
Had to go to docs yesterday as I was feeling really dizzy and light headed, turns out MY blood pressure tablets are to strong now that I have lost about 3 stone in weight, blood pressure was really low, she told me to take one, but it was only 5mg one she told me to stop. It's really low again today, so my hubby said perhaps take the other every other day and see what happens. The doctor asked why I lost 3 stone, which I thought was a bit strange asking why.
I suppose there is one positive in losing the weight, that my blood pressure comes down
On top of me still feeling like crap, my husbands Aunt has only went and fell and broken her hip, the only thing is he is next of kin and unfortunately she lives in Bournemouth so down the country from us. He's having to fly down tomorrow and stay over night, to try to talk to social services and the doctors. She has dementia as well, so he has decided that its time for her to go in to a home for her own safety. He's managed to get carers in for the last 3 years so that she could stay in her own home as she was adamant that she wasn't going in to a home. He says he feel guilty about putting her in a home, but I have said that he should not reproach himself as he's done all her could for her.
Viv I never get told what my blood count is when I go the hospital do you think I should I be asking?
Lisa sorry your feeling sickly again, its always something the joy of chemo
Well sorry that my whinge for today, hope you ladies don't mind. I always feel a little better after it
Just back from Chemo 4 😁. Half way point. I have come home with much excitement and was showing my daughter my chemo record book. She looked at me with what can only be described as pity as I pointed out that my wbc was up to 4.19 and my neuts also up to 2.96 ( they were 3.09 at the start). I thought you guys might share my excitement 😂😂.
Hope all went well today Debs...
Hope you're feeling Ok Flou, I'm day behind you but we've finished EC..😄.
Sorry you have to drive for an hour feeling sick Lisa, hope it will be worth it..
My hubby had sick bug (which I am hoping I am not getting) but he was lying in bed feeling awful and feeling alot of sympathy for me for my bad days...
I'm on steroid high so will no doubt regail more rubbish the next few days
Love and hugs
Belated happy new year everyone. I managed to stay up until the late hour of 9.30pm 😂 and have had a couple of crash days since then.
My hopes for 2020 are good health for us all.
Thank you everyone for the replies about follow-ups. It sounds a bit like it depends on individual cases but within a guideline of annual mammograms. I’ll be really interested to hear about the conference later this month Helen.
Good luck with oncologist today Debs xx
Re. genetic testing Helen, I am also going to pay privately to have one done. My mum also had ER+ lobular cancer, but I don’t qualify for testing on the NHS as the chance of it being genetic was 10%, however with 2 daughters I want to do everything I can to protect them. I will look into Myogenes.
I’m feeling pretty nauseous and have to drive an hour to see the radiologist today, so I’m feeling a bit misog. I need some sunshine (none of that here now!) and ideally some spring bulbs and birdsong to cheer me up. I’m not good at the bit between Christmas and spring!
Happy New Everyone - here’s hoping it’s a healing one for us all 😊
Last EC done today no.4 which should mean I’m halfway.
Feeling woozy but less so than usual on Day 1, no complaints except a rash on my chest which may be from the EC. I’ve been prescribed antihistamine and antibiotics with steroids to take once I finish the chemo ones on Day 4.
Best wishes to you all xxx
Happy New Year fellow lady warriors.
Thank you all for all your messages, advice, photos, quotes and wit on our journey. It has helped me alot having you guys to chat to 💕
I did manage to stay at party till 2.30 so am proud of myself for my stamina. EC no 4 on Friday....
Love and hugs, Viv
A little quote for us all going in to 2020, we will get through this and by the end of 2020 will be stronger for it.
Happy New Year to you all 💕💕💕
Happy New Year to all my fellow chemo travellers. You have all helped me so much, and I am grateful that we are going through this together ❤️The start of 2020 is not going to be great for any of us, but hopefully it is going to improve. For me the New Year will start on 1st May, at the end of my treatment.. 11 months after I found a thickening in my breast.🎉🎉🎉
I asked my surgeon, who said we were not eligible according to NHS guidelines. However he does research on genetic stuff, so he recommended a UK company which is cheaper called Myogenes. It has cost 480 which is still alot. I have saved a bit of money as they are sending the results to my surgeon, as you need to nominate a medical professional to interpret them for you.
I don't know if it is a massive waste of money as only a small percentage of cancers are caused by a genetic mutation
Hope this is useful xxxx
Hi Helen was just wondering where you had the generic test did you have to ask the hospital or doc you do it via another Avenue
Totally understand why you need to be thoroughly scanned Debs...I will cross everything that the pesky blip on your spine is shrinking 🤞Is the reason you get MRI Viv because you are triple neg? Did they say why? I did have pre op MRI as they can't image lobular well, so they need to try and work out it's shape/size.
Like Chris and Lisa, I am lobular. Lobular tends to be slow growing (mine is a fast, grade 3 subtype), slightly more risk of late recurrence (in strange places) and not always picked up on Mammograms because they have linear growth patterns. In the US it is standard care for lobular to be monitored using MRI, as it is harder to detect.
I am only being offered Mammogram..I did ask but my surgeon doesn't want to do MRI as mine was picked up on a Mammogram (I think they are keen to balance the books and follow NICE which says not to offer MRI)...however it was a palpable thickening and was 6.6cm. If I have recurrence I want to catch it sooner. I do understand that if they constantly scanned us as much as we wanted, the NHS would be on its knees!! I see it as an ongoing 'discussion' between me and my surgeon, as he isn't going to be rid of me for years 😂.
I do think we have to keep asking for what we want...as sometimes that is the way to create change to NICE guidelines. I am going to a an Interdisciplinary Breast Cancer conference at the end of January as a patient advocate..So will be learning about what the most recent advances in treatment are....knowledge is power!
I do chat to some women who intentionally don't find out anything to avoid anxiety. I am the opposite...i have even paid for a genetic test, as I don't qualify for a free one. As my tumour is pleomorphic and I have a high Oncotype score, then it is slightly more likely to be inherited. I am hoping it isn't, for the sake of my girls. However if it is, then it means they will have access to earlier screening etc.
Anyone else having a genetic test?
I am finding out the results in a few weeks..🤞🤞
All the best
Hope those who are staying awake or going out have a good New Year!
On diagnosis my hubby and I were invited to a cancer information meeting with the Macmillan nurses and we were told follow up mammogram 1 year after treatment finished and consultant follow up subsequent 3 years is mammogram and telephone follow up with breast care nurse then 5th year mammogram and consultant follow up , cant say it fills me with confidence , I'm not normally one who goes to the gp with boys and Bob's, I get the usual aches pain s headaches joint pains coughs etc but I have lost confidence in my health now and I'm sure I will be very scared of any ache and twinge .
I also had a negative mammogram in Feb 19 and then stage 2 BC in September so mammograms do not fill me with confidence.
Hugs KC xxx
I’ve already had a ct. MRI & bone scan, plus liver scan and bladder scan. And 2 ECG ‘s
Onc said it’s secondary because it’s in the spine, lymph nodes too but added “it’s in 1 vertebrae so even though on paper it’s stage 4 were not going to be saying that!
its so small in the spine we’re sure chemo will fix it. “
HOPE SHE’S RIGHT!
See her again on Friday and am going to ask if MRI done on Dec shows if spine one is shrinking.
Feel a little bit better today, although still got that horrible taste in my mouth and still very tired.
My youngest still home not going back to Holland until the 5th Jan so I,m being a mummy slave for a little while longer. I forgot how messy their rooms can be and god help my electric and gas bills 😂😂😂
Lisa regarding follow ups I was told yearly mammograms but my husband questioned it because my gremlin wasn't picked up via a mmmogram, was told lobual was difficult to pick up on one. My hubby asked because of this would I get an MRI scan on my other breast, was told it would be the decison of the MDT meeting. Hubby said he would pay for one just for me to have peace of mind. My oncologist told me I would have a CT scan after chemo, but I,m the same as you always thinking that it will come back and I also had a node in my cheast, which was 1mm bigger than the normal size, which had me freaked out I kept asking if she thought it was cancer, she said that she couldn't even do a biopsy as it was so minimal.
If it's any consolation my friend had breast cancer in 2005, mastectomy and has had a few CT scans over the years due to symptoms she had and most recently another breast screening because she was getting pain in her breast, but they told her it was calcification from breast feeding her children. I have to gone to Monday to the breast screening as I thought I had felt something in my other breast. The breast cancer nurse said she didn't think it was anything, but best to get it checked out. I suppose what im trying no to say is that it's always going to be in the back of your mind if it will come back.
Sennd hgs hugs to you all 💕💕
I think I get mri's instead of mammograms but haven't actually asked...I have Ultrasound and mammogram next week and Ct after chemo finished. Regular heart scans I think until I finish targeted treatment.. again my bc has high rate of reoccurence so will see what they do after treatment. See my onc on 21st so will be sure to ask him
I’d love to see pic of your orange curtains Viv, they sound very cheery and lovely 😊
I still feel like mummy slave too. Despite all the “we will look after you” promises at the beginning 😂
Love them though ❤️
I had an oncologist appointment today and asked about follow-ups after treatment. I was told annual mammograms for a few years, which won’t really help me that much as I had a full mastectomy so nothing left on one side, and the chance of cancer in the other breast is much lower for me than the chance of secondary (due to size of my tumours in breast and lymph nodes). No CT or other scans at all, unless there are symptoms of secondary. I was wondering if it’s the same for everyone?
Amyhey, what follow ups do you have in US?
Secondary Cancer is my biggest fear and I’d rather if it happens it’s caught as soon as possible to give me the best treatment options.
What are all your thoughts?
Luckily I have Irish passport so no hassle for me, just the rest of the family!!
Yes Helen, mummy slave is well and kicking in our house too but only in my 12yr olds eyes 😂😂. I am still being taxi driver to my daughter though on the weeks I am fine!!
Just had my bloods taken and phlebotomist was telling me they don't do picc lines here as too many problems with blockages. So only get them if you have surgery and bad veins...also was telling me that hard, dark, painful veins was one of the side effects of chemo...mine are def getting darker and more tender...
Awaiting the arrival of my orange curtains today....🙈😂😂
Lisa...I think you just had us all running to check our passports 😂...I have one year to regrow something...phew!
If you have a wig in your photo then I am guessing you will have to wear it every time you travel for the next 10 years 😂. However my partner goes from longish and bearded to no 1 and the passport control copes with the hair changes. Perhaps you could ring the passport office for advice ?
I am sad to see my daughter go as she is lovely but it is so much less work having one child at home...however good they try to be, it is amazing how quickly everything slips back into the normal routine of me being the mummy slave! But I wouldn't have it any other way ♥️
Excercise-wise, I am walking the dog when I can, also only for about 20-30 minutes max, and usually only for about half the days of the 21....
My heartbeat def goes up 1st week, especially any time I do anything. Also when I am in bed and I'm conscious of it when I'm going to sleep.
I do try and walk round the house on my bad days so at least I'm mobile but some days I am literally going from bed to sofa...
Will be interesting to get results from my ECG and Muga after my chemo on Friday. I am childishly excited that my chemo is 2 days later than normal...
Oh Lisa, that made me laugh, sorry.
Maybe your hair will grow back before you need your passport?
You don't really want a photo with a wig either.....
I am now going to check my passport and will probably serve me right if mine runs out soon, 😂😂
I’ve realised my passport is going to run out very soon and I need a new one for all the lovely post-Chemo trips I’m planning in my head!
But I don’t want a bald passport photo for the next 10 years!! 😂
Re. fitness, I’m currently attempting a short 20 min walk on the days I can, but finding even that tiring. I wasn’t that fit beforehand, working full time on my bum on a chair in an office, moderate dance class once a week and yearly charity run or walk that I train for about 6-8 weeks beforehand... Always telling myself I’d get more fit and then not really doing anything about it.
Re. PICC line, I found it quite painful being put in and it was a little sore sometimes for about a month, but I think it’s great. So easy to have blood taken and chemo infusion. I am definitely pleased I have it (luckily for me no problems with it).
The PICC lines are great..you cant feel ot notice them...mine just keep not flushing..I probably don't respect it enough! The bad thing about PICC lines is you can't wallow in the bath or lift heavy things. Also you have to get them cleaned every week which is a bit of a pain.
I asked for a central line like Amyhey has, but apparently the waiting time is too long as a doctor has to insert them rather than a nurse...this is where NHS care is a bit wobbly and more finance driven.
KC- my heart rate shoots up too for a week or so...our poor bodies are having to work harder.
Really enjoying having an extra week without chemo..just driven my daughter to Heathrow ( I know how to have a good time)..I am not going to see her for another 6 months😩. Absolutely beautiful day, with red kites hovering by the side of the M40 and the sun low over the Chilterns.
My problem is delaying the chemo has messed up all the things I have booked to do in the next couple of months, based on the premise that I am bad for one week and OK for two. Typical me trying to control the uncontrollable!
All the best Helen xxxx
i also had 12 paclitaxel weekly and 4 carboplatin every 3 weeks.
i had a picc line put in after a first painful attempt to get the iv in.
Could only use one hand and didnt want the stress every week.
best thing i did.. took about 35 mins , slightly tender for a few days then all good.
Bit of a pain having it flushed through and dressing changed every week but bloods/pre meds n chemotherapy given through the picc.
Hi Amhey , yes my friends was in her chest to and she had no problems , is it under your skin ? I think the picc lines here are on the outside and are at risk of infection , my friend was private and I'm an NHS patient
I wear a fitbit ( had it a while) it's a fitness watch as I have done the 10,000 step thing for a few years as at work I was quite sedentary ( NHS manager) now I do between 6,000 and 7,500 its doable some days lol , here in the UK they are talking a cardio fitness programme before chemo that I would have struggled with , interestingly my resting pulse rate was always very low 58 to 60 but the week on chemo it goes right up , then back to normal , it's another indication to me how strong these chemo meds are
Best wishes KC xxx
Hi KC. I had a line put in before I started treatments because I was worried about my veins. It was uncomfortable at first, but now I’m so glad I did it. Mine is in my chest and it stings for a split second when they stick me and that’s it. No pain whatsoever afterwards. It was uncomfortable for a week or so after I had it put in, but now I barely know it is there. I imagine a PICC line would be very similar.
I’m sure you are not the most unfit person here. I am resting in a chair right now after putting some toys away! The hospital I go to asked if I would take part in a study that would require me to take 6000 steps per day during my treatments. That was a quick “no” from me!
Hi all , I have my 3rd EC 7th Jan then I go onto weekly paclitaxel x 9 and 3 weekly carboplatin x3 ( I think it's that way round ) and I'm actually starting to worry about my veins , up to now I have used hands x1 each but my hands are sore and I can feel inflamed veins s in each arm both hand veins are now gone although there is another decent vein in each hand , I am getting worried about the 9 x weekly doses of chemo I'm having and am considering asking for info about a picc . I havent had surgery yet so both hands available , however I dont want to ruin all my veins . I wanted to avoid a picc if I could but I also have found it very painful to have the EC via my hand veins , I had a colleague who had a picc line and had no problems at all , yet some here have had a nightmare , I will ask my onc at next appt .
NYE I can never stay awake normally lol there will be no hope this year I'm sure .
As for the exercise , I think that may have finished me off , if I had to wait for chemo untill my fitness levels increased I would still be there in two years lol I'm probably the most unfit out of everyone on here lol
Best wishes to all , hope your getting a bit better chris ? Xx KC xx
Helen my outfit for NYE will be my pjs.
I’m hoping to actually be in a really deep long sleep now that would be bliss lol 😂
I am wondering now if I am being a bit of a princess about my veins! Glad it isn't the end of the world to not have a PICC... If they keep failing then it may be better to take it in the hand!
I am also dreading the taxotere...though one of my chemo ward buddies said her tiredness was much worse when they added the platinum.. So the taxotere on its own was manageable.
Viv.. Re exercise... I think with the beauty of hindsight we would have all led exemplary lives! I think for higher grade or aggressive subtypes where you need to go on chemo quickly, the difference will be minimal. It is definitely hard to stay fit... Chemo is tiring and the PICC line/surgery means that the muscles in my arms are shrinking over months of lowered use.
Sounds like you are all doing exciting things for NYE... Not sure if I can be arsed!!
I'm with you Chris, the idea of having a permanent line in makes me feel sick, long may my veins behave!!
Debs, have fun with Harry..💕
I'm going to an 80's theme Hogmonay party as my chemo is delayed till 3rd. No doubt I will also be designated driver for all the teenagers at their parties, 🤣..
Last of the EC's on Friday and I am actually pooping myself about the docitaxol. After reading side effects I may really be pooping myself...😮.
On that note...
Love and hugs xx
just waiting for Harry, moms at work and dad wants to get something to wear on NYE.
I get the cannula wasn’t offered anything else tbh, I to have had sore arms. I’m on FEC-T & targeted injections to sort out the spinal cancer!
3 FEC & 3 Denusomab down
next Denusomab on 2nd Jan then chemo T part on 10th