Hey everyone, just checking in again after reading some of your experiences.
@higgi I will have to check out that page as it sounds like the kind of advice I could do with right now. The fatigue has been unreal this time and I've only really just started to recover now before I'm in again next weds. Also my veins have given me the most horrendous aches and pains to the point I've not been able to hold things. But I've bought some bio oil after speaking to my nurse and have tried a but of massage tonight on them so hopefully it will ease slightly.
@grannyp I totally understand you wuthe the hair issue. That was my biggest fear going in to this treatment and after trying everything possible to save my hair I was utterly distraught by losing it all.
I still cannot face looking at myself in the mirror and actually gate touching my head. Not one person has seen me without a hat or scarf in since losing my hair and it terrifies me incase one of my kids see me like this! It's not me and I don't want them to have this image of me. I didn't realize how much it had actually hot to me until I had a chat with a Macmillan nurse today when my son popped out. I told her that my hair had been the hardest to deal with them burst in to tears and couldn't stop! I've held everything back as I don't ever want him to see me cry and get upset over this so I put on a face constantly as he is here pretty much 24/7 with me. It did actually feel good to finally tell someone how much it has affected me but doesn't actually change anything.
I am so pleased you are able to try the intralace hair system and hope that it helps you if not I will run away with you and hide from all these nasty treatments too 😄
@Karden I have exactly the same issue with tea! I was a massive tea drinking and it kills me that I haven't been able to enjoy a cuppa in a long time! My tastes have completely changed and I think my son and mum get fed up of my sudden cravings for random things! I was really in to mint choc chip ice cream last week but this week it's orange ice lollies. I can't wait to just be able to taste food properly again.
Sending love to all of you xx
Hi everyone thanks for feedback on vaccines... well I’m going for it Sunday that’ll b day 19 for me after last EC ... my bloods in past always show my red n white blood cells way above the normal so hopefully I’ll b ok as I go for new regime of chemo wed snd thurs after (docetaxel and her2 targeted therapy for 3 cycles every 3 weeks )
I have been feeling better than ever this cycle and hope it continues on new regime ! I attended workshop “cancer related Fatigue “ online yday run by FB group ... “5kyourway.moveagsinstcancer
i can’t recommend this group enough .. full of useful tips and online workshop n exercise to get people moving ! Please take a look if you are struggling with fatigue. They recorded it so u can watch it at your leisure !
Masssging the veins in arms has helped so if you got pains from cording please try this .
big hugs to you all ! Stay safe ! Xxx
Sorry to hear that your PICC line didn't work out. Fingers crossed that you will be ok with the cannula for the rest of your treatments. And lots of luck for your next treatment tomorrow. Another one will be crossed off!
I also have to continue with the cannula as my planned port insertion before Christmas couldn't take place. The real struggle for any theatre time at my hospital means that it simply hasn't been possible to arrange another slot and there has been no mention of a PICC at any point - I think that perhaps my hospital don't do them! Only 3 sessions to go, so just hoping that the veins hold out.
I have definitely been much more tired after the 3rd EC last week. My haemoglobin level had dropped last week and I had become mildly anaemic. I am guessing that this is the main reason for the tiredness as it will have dropped further after treatment. Just hoping it builds up a bit and isn't too low before next treatment. Trying to ear lots of iron rich foods in the meantime!
No other problems - just the tiredness. But I have to say that mentally and emotionally I still don't feel great. I am getting to hate the whole thing more and more and I honestly believe that I could walk away and not finish the treatment if it wasn't for my family - I am carrying on as best as I can for their sake. I do often give myself a good talking to, telling me not to be a wimp and also tell myself that I am actually in a much better position than an awful lot of people. I am trying to distract my mind and get on with other things but the tiredness isn't really helping with that. I am however getting out for walks each day and am gradually building up the steps/distance again. So it could definitely be a whole lot worse. Positive head on!!
I think as we have said before we are all at the stage where things can get on top of us and the end still seems a long way off. One of my nurses told me that it is definitely very common for people to feel at their lowest point half way through treatment.
I am still losing hair but still holding on to enough to manage most of the time with a large stretchy hairband covering the crown which is now very sparse. I do avoid looking in the mirror if I don't have my hairband or woolly hat on and I think that is quite common for those of us who find the whole hair thing difficult. I may have said before that I have huge admiration for those of you who can accept the hair loss or even embrace it. Kudos to each and every one of you. For me, the diagnosis and treatment take away so much of our identity and the hair loss is just the ultimate loss of identity. However, I have taken some control over this as I have researched and signed up for an Intralace system. Apologies again if I have already told you all this - my chemo brain really doesn't remember much of what I have said and to whom!! I am able to have this done during lockdown as the consultancy I am going to is classed as an essential supplier for this procedure only. I really want it for the months after treatment and when life hopefully returns to some sort of normality but I do think that it will actually give me something of a boost. Hope so anyway, as it is costing an arm and a leg!!
As always, lots of good wishes to those of you undergoing - or recovering from - treatments this week. And hoping that everyone is suffering as little as possible. Every day is one step nearer the end of this x
Morning @higgi and everyone,
re Vaccine - I just spoke to one of the oncologists for my pre-chemo review (bloods fine, phew) and asked about the vaccine. She said their advice is that we should have it as soon as we are offered it and that it doesn't matter when in the cycle. She said that the most important thing is to get protection from Covid.
@grannyp - how are you doing this time around?
All the best for the day, everyone x
Thanks @Karden - you are right, the nurses were really lovely and explained everything so well. I didn't feel anxious once I was there with them. But unfortunately my veins - which looked okay on first scan, seemed to have shrunk by second scanning and after two long attempts, we agreed that they (the veins) were having none of it and we gave up. So I will have to keep having cannulas for another 4 treatments. It's been fine for the first 2, just hope they last...
@Shine13 it's great news that you have managed so well with your first treatments - long may it continue!
I had my 4th and last EC on Friday (hooray) and this week has been fine one of the best weeks. I have generally got off really lightly still working four days a week slight nausea, heartburn and constipation all seems to be resolved - prob on the right meds for symptom control now, no other symptoms to mention - fatigue not bad. Just posting the good news side for others behind me in treatment as most postings seem to be having a much tougher time. I don t have any kids to exhaust me so am in bed early and getting in good sleeps. Waiting for chemo to push me into menopause but no signs yet. That might be worse than chemo in my case.
The oncologist has forewarned me there might not be much tumour response and they need to see response to the taxol regime I start next Friday weekly for 12. Only small response in first MRI another one next week.
Hi @donkeywoman ,
I'm in Sheffield and have a PICC line, I hope it goes well for you, they're a lovely team and will look after you. I have had no problems at all since having it inserted and the district nurse calls each of the weeks between chemo to do the flush and dressing. Instead of buying PICC covers I just cut up lengths of opaque tights which do the job perfectly well.
Re my taste issue, it usually improves about a week to 10 days after each chemo but still can't enjoy my tea. I tend to have milky drinks like hot chocolate or a latte but have to ration them.
I've also developed a liking for Twister ice lollies which I find really refreshing.
Thanks for sharing experiences. My understanding is that the Covid vaccine is not live, so shouldn't have an effect on our immune system. People I know who have had it (not on chemo) have said they've had a sore arm and/or a bit of a headache.. But it is tricky isn't it, if we have it near to chemo, we are more likely to feel ill and then have it delayed. I haven't heard back from the breast care nurses, but will ask oncologist at my phone appointment tomorrow. I think I will try to have it if I'm offered, but would like some advice first..
@Karden sorry your fatigue is getting worse, but sounds as though you don't too much further to go.. Does your mouth feel bad all the time? I can't drink tea and have the horrid taste for the first 2 weeks, but then it's better (never quite goes) and I can drink tea again, which is lovely!
Hope you all have reasonable days. I'm off to Sheffield to have a picc line put in x
I had COVID vaccine a couple of weeks ago and had no side effects. I got different advice that does nt help. I was told it must be three days after my chemo and no word of just before a session. I am not to worried as my white cells have always been fine and I have not suffered ulcers or anything to show my immunity is weak. I know chemo is highly associated with immunosupression but we are having the injections in COVID times though it is variable in how we respond. They don t know if it works in immune suppressed so you still have to shield and if it works it can take three weeks. So I guess get advice from your breast care nurse and go for it if you have the oportunity.
Interesting reading on the vaccine and some varying advice.
I asked at my chemo session last Thursday and was advised to have it as near as possible before a chemo session when immunity has recovered from the previous cycle. However, like some, I'm concerned about being unwell and not wanting to delay my 4th cycle which could possibly be my last one depending on the response to treatment. I may just wait until after its done on 11th Feb as I'll be having a break until surgery in March. I haven't had a letter yet anyway.
Hope you are all doing ok. I have been feeling much more tired this time and less motivated to do anything. The bad taste in my mouth is a nuisance and I am really missing my favourite foods. I would kill for a cup of tea that tastes as it used to do, I never imagined I could survive 2 months without it!
It's a small price to pay though to be well again. xx
Thanks for speedy reply ! My team said to have it as close to chemo as possible which for me is Sunday .. I’ve got a slot but really worried if it makes me ill It cud delay next chemo ! So can’t make my mind up arghhh . Any body else had it yet ? X
HI donkeywoman/Higgi.... I'm from July chemo thread....I'm having rads at moment and had my vaccine yesterday....all CEV getting done from last week in my area ( NW) .... those on chemo are being told to have it the day before chemo...as their immunity at its highest.. definitely cant have both on same day....maybe ask your team what the advice is in your area....I had to have mine in my leg.. had nodes removed on one side and had blood clot from picc in other....my friend on chemo also had to have in leg as nodes removed one side and picc in the other....I had the Pfizer...but they are giving both in my area....it seems to be people having oxford are getting more side effects but that may be just anecdotal....I have a dead leg....but no other side effects....good luck and hope you both get your vaccines soon
Hi @higgi and morning everyone.
The vaccine seems quite confusing to me, so I'd love to hear if anyone has actually had it yet. I was offered it via work, as I'm a patient facing nurse, the other day, but I've decided to wait to have it more locally (can't quite face walking through my hospital as I am so likely to see someone I know. Many of my colleagues have had it and it's been fine (slighly sore arm, bit of a headache) but of course it is different for us. I have heard/read different ideas about the vaccine and chemo... I left a message for the BCN's about it yesterday, so if I get some advice, I will share it here.
Hope all your Tuesdays are as good as they can be x
Hi hope you all managing today to keep going each day is another day nearing the finish line !
Please can any one let me know if they’ve had the vaccine and how you found it !
thanks 🙏 big hugs xxx
Sending you lots of good thoughts and a virtual hug @donkeywoman. This really is a rollercoaster from one day to the next, isn't it. And an offload is good for you - we all need to do that and somewhere like this where we won't be judged is great. I think most people will identify with the up and down nature of our emotions and the inability to often deal with what would usually be normal everyday things. Our minds are consumed by this beast that is cancer and chemotherapy and, whilst we do find ourselves able to take short breaks from time to time and feel relatively normal, it does come back with a vengeance and knocks us into touch again! Just be kind to yourself for today, appreciate having had a good day yesterday and look forward to ticking off another treatment soon.
I still don't feel anything like 100% physically today but managed a somewhat icy and slippery walk earlier and consoled myself when I realised that I was now definitely over the halfway mark of my time in treatment. Trying hard to find any positive that I can and I think that is the best that most of us can hope for at this time. Take care and hope that your day improves.
And thinking of everyone else as we start off on yet another week. x
Morning all, and as Happy a Monday as possible to you all, particularly the home schoolers...
What a difference a day makes. I felt the most like me that I have for a few weeks yesterday, but today I feel quite frail and vulnerable again. I should have been going to the GP surgery this morning for a routine jab (B12) but just couldn't face driving on our icy, rural roads, so cancelled it. Usually I would find a way to get there - my husband is working, but my neighbour would have taken me in her 4 wheel drive. But I just didn't have the oomph to arrange it. I seem to be very easily stressed at the moment - anyone else? Small things will put me in a spin, when I would have previously taken them in my stride...
Ah well, all part of this miserable journey I guess.
Just a quick offload - thanks! x
Thank you so much for your kind thoughts. And you are spot on - I am usually very positive and encouraging everyone else to have a positive attitude. But this has really knocked me. Sorry to hear about your heart attack but glad that you seem to have made such a good recovery and also got your life back on track. I am sure you will be able to get back to your usual life once this treatment is all over and in fact I do know that we all will be able to do this to some extent. Life is a succession of changes after all and we have to accept and learn to live with whatever situation we find ourselves in. Very hard at the moment but the more I think about it the more I see that the sheer horror of some of this treatment and the way it can take over does completely cloud our views.
And you are so right that at the stage most of us have reached we are indeed feeling very low - the effects on our bodies are getting worse, we are increasingly tired and the end still seems a long way away.
Enjoy the rest of your good days and hope that your next treatment and Picc line go well.
And lots of luck to everyone else having any treatment this next week. We are getting there! x
We certainly are on a roller coaster of a ride, I'm sending you a big virtual hug and positive vibes for paclitaxel
I am 46 but have other health issues so they offered 2 weekly chemo with a view to changing it if not tollerated. It's been heavy going at times, rest can be in short supply 😂
We will get there! Keep in touch
Morning everyone, hope Sunday is treating you as well as possible so far. I'm in the good days before it all starts again.. Trying to enjoy it and not allow the dread of the next one (and insertion of a picc line on Wednesday) spoil it. I did a covid test on Friday which was negative, so there's one good thing.
It seems as though we are all far enough in, but far enough from the end to feel quite low/weary... And all the differences in treatments are quite confusing. I try not to compare, but do sometimes find myself thinking 'why do I have to have 6 Docetaxel?'... That kind of thinking gets me nowhere! I think I'm getting a little better at the one day, treatment, week, hour at a time thing. But I do love turning the calendar over to the date when I am due to end.
I hope the home schoolers are having a decent break this weekend and getting a bit of a breather...
@grannyp I'm thinking of you a lot, as you sound such a positive person, but this is (obviously) taking its toll on you. I'm hanging on to the idea that we will get back to being ourselves again, even with some small changes/scars. I had a heart attack, out of the blue 9 years ago (I was 46) and I remember thinking that life would never be the same again. But in fact, apart from the anxiety that has never really left me, it has been. It's been better in some ways (by chance). It took a while, but it did fade... Cancer has at least knocked worrying about my heart out of the way! And, in fact, the oncologist wasn't sure whether I would tolerate Docetaxel, but my echo was fine and so far I seem okay. @higgi what a nightmare, getting the wrong result on your echo. You sound super fit and healthy, hopefully this will be fine too.
take care all x
Hi again @PaulineS27
I think that perhaps the different regimens depend on what our actual diagnosis is but I don't actually know. Possibly just different protocols with different NHS trusts? Someone else on here may know more. When I had my initial consultation with my oncologist it was just decided that I would have 3 + 3 EC-T. I asked a couple of times about having EC 2-weekly but I was too old! Apparently they generally want you to be under 60 and fit and healthy as there are are slightly increased risks of the more rare side effects and they are more concerned about this with older people. But she was happy for me to have Paclitaxel 2-weekly - this reduced the overall time by a couple of weeks, so better than nothing!
Home schooling and having treatment at the same time must be incredibly difficult. I have such huge admiration and respect for anyone who is doing this. Even just looking after children whilst having treatment must be hard - it doesn't allow much time if you feel rubbish and need to rest.
Yes, I understand that hair can start to re-grow on Paclitaxel. Fingers crossed! I think we could all need a bit of optimism when we get to this stage. I am certainly feeling pretty down about the whole thing at the moment but we are on this rollercoaster and just have to go along with it all now!
Good luck with everything x
I am having it weekly over 12 weeks, didnt know it was an option to have it over a shorter time span.
I had EC fortnightly although they did say I could swap to 3 weekly, I was the same as you, I just wanted it out of the way even though it meant I didnt get many 'good days' before the next cycle.
I think having children at home and attempting home schooling 😂 whilst on EC has meant I havent been resting enough as the last two EC have been a struggle mid treatment when the white blood count is low.
Good luck with your treatment, fingers crossed it's easier. On a plus note I have been told hair re grows on paclitaxel 😁
Keep in touch with how you get on x
I am also due to start Paclitaxel in a couple of weeks and was horrified when told the length of time I need to be in the unit! Will you be having weekly treatments? I am having three dose dense treatments and I am told the infusion takes much longer. Together with the cold cap time, I will be there almost all day - with a frozen head! My oncology nurses have assured me that most people tolerate Paclitaxel very well and it will be easier than EC but having read that the side effects are less with weekly doses I was very tempted to ask if my oncologist would change my plan!! However it will only be 4 weeks from the first to the last treatment, rather than 9 if weekly, so I decided that was important to me and to just shut up and get on with it! I think we are all finding that we can get through things we never would have thought possible only a few months ago.
Sorry that you have struggled with EC. I haven’t been too bad but I am definitely glad to see the back of it.
Good luck with the rest of your treatment
Thank you for taking the time to reply. So pleased to hear that Paclitaxel has been easier, my oncologist said it was easier than EC but when the chemo nurse said I have to be at hospital for 6 hours for my first session for observation I thought wait a minute.......easier ????? lol
I am keeping my fingers crossed as EC has been hard going at times. Thankfully I have finished my EC cycles and am counting down and waiting to tick off my paclitaxel and hormone blockers.
The chemo nurse said my hair will start to re grow on paclitaxel, here is hoping!
Hi everyone! Lovely once again reading your updates! I take my hat off to all of you and to those who have already had surgery ... it must b so hard as u say it’s another massive trauma to the body is chemo on top of surgery ! So I think you are doing bloody amazing ! And yes age snd pre fitness also affects things .
I’ve got the surgery to come .. mastectomy n full axillary clearance probs end April may ? I know it’s a chemo thread this but may I ask those of you who’ve had a mastectomy... if any of you have , and if you had a recon with implant - did you go under or over the muscle ? ..... also to the supervisor... could you direct me to where I can get more information on this please ? Thanks x
my mri showed shrinkage just mm but shrinkage so happy with that 😌
on another positive I’m finding round 3 EC the easiest so far or maybe I’m ghetto go used to the new norm 🤣
just had repeat echo so always anxious for results as my 1st was borderline low then had a repeat and was perfectly normal !!! Such a worry . I’m extremely fit and still cycle over 100 miles a week so I know I can’t have cardiac disease ... just the 1st time they got it wrong n put me through unnecessary stress !
re vaccines ... once again I’ve been told we must have it when immune system is at its highest that’s just b4 chemo . So I’m hoping get mine next weekend ... again nervous . Any of you had it yet ?
best wishes always
It’s horrible feeling so old and unfit! I am 64 but before this dreadful disease hit I was very healthy and relatively fit. Before lockdown hit last year I regularly did several dance and yoga classes each week and dog walked at least once a day. During lockdown I had to rely on online classes and my usual exercise routine took a hit, although I did walk much more & kept my Furness up. Just got back to classes & then diagnosis hit! Enforced break from everything except walking due to two ops & then straight into the fatigue of chemo! I have to accept that after all this at my age I will never get back to the level of ability & fitness I previously had. This is one thing that really saddens me - I can never return to the person I was pre-diagnosis. I believe we all feel this as the diagnosis, treatment and ongoing worries etc undoubtedly do change us in so many ways - and it can be for the better. I totally appreciate that my health is obviously the most important thing in all this, but I do mourn my pre-BC life - along with my hair!!
But I will continue to walk as much as I possibly can, during the better phase of the treatment cycle I am doing some yoga and I am determined to build up some strength to manage more than 10 minutes’ ballet exercise before my thighs give up completely!!
Hoping that everyone has as good a weekend as possible - and let’s all keep moving when we can x
Oh @grannyp so sorry you are feeling aged...but think I know what you mean... you sound fitter than me, but I have always been active and spend as much time as possible outdoors. But after half to an hour pottering on our land, I feel shattered these days. Miserable isn't it...I know the exercise is beneficial but it's also quite disheartening when it feels so hard.
We will get back to who we were, though it may take a while.....xx
Just jumped in from Nov started.
I had EC and yesterday I had number 2 of 12 paclitaxol. I have so far found it alot easier than EC. I did come home and have a small nap yesterday, but I've had no sickness / nausea so far on this. I get reflux and have Omerpazole. I know I have 10 to go, but so far it's much better.
Good luck Lou
Well, just had proof of what this dastardly treatment does to us. Wednesday morning pre-treatment I walked my dog down to our beach on a cold, grey, damp day. It is a long fairly steep walk back and managed it perfectly well - perhaps a little slower than I would have previously done but no breathlessness. Today, two days after treatment, I have been for a 25 minute stroll on the flat and felt like an unfit 90 year old!! I have walked each day during treatment, apart from the first day each time, building up to my usual distance/step counts - the exercise is beneficial in so many ways. Today is so lovely and sunny that I had to get out but it definitely hasn't brightened my mood. Hoping that tomorrow I can go further and not feel quite so bad. I look at least 10, and at times 20, years older since hopping onto this rollercoaster and today my body felt that it had overtaken my face in the ageing process!!!
Hope everyone is doing ok & that treatments have gone well this week. Some of us are now at - or almost at -the halfway stage. Still seems a long way to go but just think what we have done already. I had my last EC yesterday - ticked off each as we went! Felt pretty rough this morning- worse than with the previous 2 - but as the day has gone on I have improved a lot and fingers crossed I am following the same pattern as before. Now got to see what delights paclitaxel brings!!
@Georgie76 Having extended sympathy to you about an upcoming 8 hour stint in the unit, I found out that I will be there for getting on for 7 hours!! That does include cold cap time but I am not sure I can do that 3 times! The nurse did recommend that I sleep - she said the IV Piriton they give beforehand makes you very sleepy. We will see!
It is good to read how you are all getting on. Huge respect to those of you coping with home schooling on top of dealing with treatment-it must be so tough.
Hope you all stay as well as possible x
it's definitely worth asking, a friend told me about them or maybe try McMillan and see if anyone similar covers Manchester.
EC has been hard going but I am switching to pacitaxel which I am hoping will be a little easier.
Wishing you all the very best
Thank you for responding. I haven't heard of nightingales but have Maggie's - I think my nearest is Manchester so still a way from me, but I will have at look nightingales. I wasent sure what they will be running with covid, but if I don't enquire I won't know !
I hope you are managing too on this horrid journey none of us want to be on
just wanted to say the breathless thing is crazy, it's when the white blood count is low and by the time I get the the stairs I am like an old war horse, can hear my own heart beat in my ears like I have run a marathon. For me it lasts a few days then goes again thankfully.
Your son sounds amazing and yes I hate the impact its having on my family too. My son helps out, my sister works full time on shift and comes on all her days off to help with the washing (5 person household lol) and my 9 year old is the one I worry about the most as she checks on me regularly and wants to help out but I want her to play and draw so I just say I am fine and thank you for offering although she is on dishwasher duty lilr before lol My husband is emotionally impacted by it all and I think he is finding the worry of it overwhelming......men hey!
Thank you for sharing your experiences with everyone.
I wanted to say you are doing amazing, managing home schooling and working, what a fabulous achievement whilst under going treatment.
I have just finished EC and about to start pacitaxel and Her2 meds too.
I have two children to look after 9 and 4 but havent felt up to work, too tired and I admire you.
Also well done for asking for a referral to help emotionally. Do you have a Nightingale charity near you, they offer mindfulness course on line, counselling, weekly catch up via phone with mentors etc if you want it and when allowed to have people in the premises they do massages reflexology and various other treatments
Sending you a virtual hug
Hi lovely ladies
It's good to hear that the docetaxel hasn't been as bad for some of you so there is hope it won't be as terrible as I imagine it. I think as you say, a lot of that 8 hour period will be monitoring for any reactions so I will take a good book with me and try to relax.
I hope those of you that have had your sessions today are ok. Another step closer to the finish line!
Had my half way MRI scan today and the nurse said I might need to be seen by someone about the veins in my arms as my wrists are still quite firm. I'm hoping they will go down as I really don't want to go anywhere to be seen. But, I'm also worried about clots as I am so breathless this time ☹️
Also, I swear that machine was built by a man! It's literally the most awful, uncomfortable thing ever! Any clever people on here that could invent a better one 😄 xx
So pleased to read that your lump has shrunk. Hope your chemo session goes ok tomorrow. It's certainly a long day for you. I'm due for my Zolendronic Acid, a follow up to help prevent cancer spreading to my bones in the future as I was TNBC and post menopausal.
Susie B xx
Just popping in to reassure you about having a PICC line. It does seem a bit alien for the first week or so but once it starts to be used for infusions you'll see the advantage of having one. I had one in for over 7 months having taken part in the ROSCO trial and requiring 8 rounds of chemo. I currently have twice yearly infusions of Zolendronic Acid via a cannula and funnily enough I still prefer a line. Good luck
Susie B Feb 19 starters. xx
Makes me cry thinking of you weeping @donkeywoman ~ this is hard isn't it... Very. But we're OK (in our horrendous toxicity). We're doing well, we're getting thru it. And a cry is much needed sometimes. I'm thinking of your donkeys now and smiling and sending big, big hugs to you X
Morning all, yes, there is a lot going on, isn't there... I guess as we get further into the treatment, we have that cumulative effect of the toxicity...
I echo those who are on Docetaxel, as I am, that it's not been as bad as I was expecting. I do feel wiped out and can tell my body is full of .. well, poison really. But I've been up everyday and not had any major problems yet. My liver is struggling a bit apparently, but I think they will drop the dose if that carries on. I am on the same meds for all 6 cycles, (no 3 next week) so don't have anything to compare it with. As @Karden says, the long days are because all meds given separately. And at my place they sit with you for the first 15 minutes of the first two doses of Docetaxel, to check for reactions. Which I thought would be scary, but in fact I found it very reassuring. Obviously the hospital day is no fun (what is, at the moment..) but I actually find it quite relaxing in some ways. I feel I have to be so vigilant all the time, in case I miss a sign of infection, that having a day when the nurses are in charge of me, is quite nice! I try to find pleasure where I can...
Thank you to all who speak positively about Picc lines. Mine is due to be put in next Wednesday. I was so sure I didn't want one, but I've definitely come round to it.
@Georgie76 sounds as though you have a lot to deal with - it's all so complex and multi-layered, isn't it. You (all) sound so brave, finding your way through it. Hope you daily weep helps a bit? I sometimes find myself with massive tears dropping onto my chest, when I didn't even think I was feeling that sad...
Wow! So many posts since my last visit and everyone facing their own issues.
I saw my oncologist yesterday and she has confirmed that my lump feels significantly smaller and is harder to find straight away. That's after 2 cycles of TC. (Docetaxel, cyclophosphamide, Pertuzamab and Trastuzamab). Mine is HER2 positive and hasn't spread to lymph nodes. 2 more cycles to go with the 3rd tomorrow. I'm feeling very positive and know all the downside of treatment is worthwhile.
For those ladies about to start Docetaxel, I would say that it hasn't been too bad (apart from the mouth ulcers after the 1st cycle, but a slightly reduced dosage in the 2nd cycle has sorted it). I am at the hospital from 10.30am to 6 pm which is a long day but each of the 4 drugs goes in separately and the PICC line is flushed in between each one. They also include observation time on the first cycle to watch out for any adverse reactions.
I really admire anyone coping with little ones at home, it must be a real challenge! I also take my hat off to older children caring for their parent, it's amazing how they can be so resilient too. It sounds as though you have amazing families. My own 3 children are all adults and I really miss seeing them but we survive with phone and video calls.
I really look forward to hearing from you all and it makes me feel that we are all fighting this awful cancer together. Yes, life can be pretty c**p but we WILL get through it and let's hope that not before too long we can look back on this time as a short period of our lives that is just a distant memory. 😘😘😘
I have been reading all your posts daily just not replied for a while.
There seems to be some concerns re docetaxol and a few of your moving to this soon. I started on this, had 2 and number ,3 tomorrow. Moving onto EC next. My consultant did say it was harsh and I know everyone is different, however I would say I have been fine. I haven't been sick or needed meds. My side effects have been very minimal, dodgy tastes, spots, red cheeks and dry skin, a little constipation but nothing much at all, so I hope you all have the same experiences. @Georgie76 not sure about 8 hrs ? Including cold cap I have only been about 3/4 hrs, maybe on the 1st they just want to monitor you a bit longer ??
Re hair - I have cold capped, but still lost quite a bit on top, leaving it more normal and sides and a tuft at the front of normal thickness, however with being home and just the "weekly trip out" to the hospital I am riding with it at the moment and don't feel I need to shave it, but it isn't great and totally get how you are all feeling it is the upsetting part of the outward look that we are "the cancer patient"
Re picc line - I was worried about this too, I think the "don't know" but the procedure is ok, let it settle a week (any bruising or aches) and then you forget it's there really, I have a cover to wear and we are in long sleeves. Showers a bit of a pest with the water proof sleeve, but the gains of the line outweigh the negatives.
I have 2, boys ages 13 & 16 and yes feel awful that they are going through this but they seem to be doing ok, add home schooling and lack of socialising with friends it is really a rotten time for them, my 16 year old should be doing his GCSEs so all up in the air for them.
It is really hard to be going through what we are with treatment at any time, add covid to it, winter gloomy months, restricted and not seeing family and friends, staying home, home schooling (for some) no wonder we are struggling.
I personally am doing ok physically but emotionally struggling, in tears most days, (I am stage 3 with supraclavicular node involvement too, which this area can only be treated with chemo and rads) As much as I am told positive thoughts I am struggling daily, always on my mind and worried of the outcome. I have therefore asked for a referral to psychology to try to help me deal with this.
Anyway I best get up and prepare for work (continue to work from home to try to keep my mind occupied)
Good luck everyone with ongoing treatments and I guess we have to remember this isn't forever and we are part way through x
@dipitdee I have my fingers crossed for you to be able to get to New York! You could do with getting away from it all after this!
Thank you, I'm really praying I have a bit more energy next time! I have 3 rounds left, the long 8 hour one then hopefully the next 2 will only be around 3 or 4 hours. I then move on to trastuzumab injections I believe.
I'm really trying to enjoy that family time too and love going out for a walk with the dog and my boy. I don't think there's many teenagers that would be out with their mum every day bless him 😄
Hopefully you are right and we will time out treatments ending with a slight return to normality! That is the positive to our fight during this time, everyone is stuck at home not just us.
@donkeywoman Saw oncologist today and he’s reassured me that the pain is ‘normal’ and that even though the EC hasn’t reduced the size of the tumour(s) it might have affected tissue or caused hormonal changes that could be the cause of the pain. I have another weird cord like lump across the top of my breast that he said he’s not sure what it is but said he’d ‘bet all his money’ it wasn’t anything sinister. He thinks is might be ducts that have swollen. They haven’t mentioned it on the MRI report so it won’t be anything to worry about, although he said he would ask if it was visible on the MRI. As far as being too immunosuppressed on trastuzumab to do anything...I asked today about whether it was even possible for us to go on a holiday we have booked to go to New York in May. I will still be on ‘the mabs’ (as a nurse called them the other week!) then and he said barring COVID issues and depending on when my surgery is that it could still be a possibility, so that sounds like it shouldn’t stop us from looking forward to some activities going forward.
@Georgie76 so sorry to hear you’ve had it so rough this time. Hopefully next one won’t be so bad. I’ve been told by oncologist that tiredness and nausea not as bad with docetaxel but I guess they all affect everyone differently. Your son sounds like an absolute diamond! I’m sure he’s just happy he can make things a bit easier for you. It’s so hard on our families. At least with COVID they’re not missing out on as much. How many cycles do you have left? I’m trying to embrace this family time when we’re in our little bubble. Hopefully the world opening up will coincide with us all finishing the worst of the treatments and it’ll be easier on everyone x
How are people on trastuzumab doing with the injections after? The oncologist has got me really worried about the muscle and bone pain?
Fingers crossed your treatment tomorrow goes as smoothly as it can. I'm really not sure why it was worse this time but hopefully you will recover quickly.
With hair I don't think anyone can understand unless they have been through it. It really does strip you of your identity and makes you hate this whole process even though you know it's ultimately keeping you alive.
I've not heard of an intralace hair system, sounds interesting. I hope it works for you 😊
Unfortunately too much of mine came out so had no choice but to clip what was left.
It's lovely that you have your older children there and I really love that my son is with me but the guilt is awful. My daughter has returned to uni in London but I know she is really upset being so far away and not being able to help. In some small way I am glad she gets to live some part of her life away from all of this though.
You are right, it's most definitely not easy but hopefully we can look back on this in a year or so as just a rubbish patch on our lives.
Hope you manage to get some sleep tonight.
Sorry to hear that your latest treatment has knocked you sideways and I hope that you are now beginning to feel better.
I have my 3rd EC tomorrow. Really dreading it & am expecting to feel more tired this time.
I agree with all you say about the hair loss. For me it really is the worst thing & I definitely won’t let anyone see the really thin patches on the top. The rest is thin but still doesn’t look too awful with a wide hairband but I think I will start wearing my wig soon. I don’t even look at the top myself - I take the hairband off and comb & adjust it away from the mirror! I have signed up for an Intralace hair system and can’t wait to have it done. A very big investment but I am hoping it will be worth it!
And I can understand how you feel about your son. We have two of our much older children living with us at the moment - different reasons due to covid & lockdown! I hate to be around them on the first few days when I haven’t felt 100% & will really feel bad about it if I am really rough. The guilt about the effect on family is very difficult.
8 hours sounds like a nightmare!! I think I definitely may run away if I have to be there that long. I change to paclitaxel next time but haven’t been given any timings.
This whole process really does get worse & worse as we move through it. I am sure we will all get there but it sure ain’t easy☹️
Hi to all you lovely brave ladies. I've not been on since just before my chemo last weds. I went in thinking it won't be too bad as my second was easier than my 1st but for some reason it gave me a right kick in the teeth!
I had to have my treatment in the same arm as last time as my veins were still swollen from the first course so that was quite painful. Then the tiredness was just something else! It was totally unexpected after the last 2 but I just couldn't even function for 2 days afterwards ☹️ I also woke up the day after with extreme pins and needles in my hands which apparently can be another lovely side effect.
I really feel for you ladies with the hairloss, it's still been the hardest thing to deal with so far and the only reason to be thankful for lockdown. I absolutely hate seeing myself bald and still haven't gotten used to it. I haven't allowed anyone to see me without a scarf or hat still as I hate the thought of family seeing me like this.
So many people say it will grow back and you look great in a scarf but it really does get me down. I know everyone is well meaning but it's just so difficult to deal with that I just can't talk to people about it.
Anyway, my next treatment switches to docetaxel and it's an 8 hour session 😭 I really am stressed about this and get so upset when I think about it. Has anyone else had an 8 hour session when switching? I've heard lots of horror stories about docetaxel already so I'm desperate to hear something positive!
Also, is anyone else still really breathless after doing not a lot? I really feel sometimes that this isn't right to be out of breath walking from one room to the next but its become my way of life right now 🙄
I also feel terrible for my son, at 19 he shouldn't be doing everything for me. I hate that he is cooking and cleaning and feels he has to check on me all the time! He is absolutely amazing and I know that he is stuck home with me anyway but it's not the memories I would want him to have of me being weak and tired all the time. Is anyone else feeling guilty about the effects on their family?
Sorry for the rambling ladies, I hope it made some sense.
I hope for all of you having treatment this week that it is easier for you. We are all a step closer to the end even though it still seems so far away 💗
Morning @dipitdee and everyone. Crikey, that sounds scary, glad it wasn't a clot. Did they work out what had caused the pain? Another side effect? Hope things go more smoothly from here - as if you haven't got enough on, with a 3 year old to home school too (I've heard CBeebies is very educational 😊). The tumour not shrinking yet must be disappointing, but you still have plenty of treatment to come, don't you?
The rollercoaster that is chemo is quite something and I agree, @grannyp , it is impossible to really understand until you are in it. Even though I look pretty well, as folk like to tell me, no-one knows how odd and just rubbish I feel deep in my body. And, even though I feel quite well at the moment (Day 11), I still woke up and found myself crying. Yesterday I was feeling optimistic, looking beyond chemo and even booked some annual leave at work for September for a trip for cricket and a music festival. I don't even know if I will be able to go as I will still be having the Tratsuzomab injections (anyone know how immuno-suppressed they make you?). Today I am back to wondering how on earth I will make it through another 4 treatments...
Good luck those of you waiting for blood test results and treatments. Hopefully you will be one more down soon. My next hurdle is a picc line insertion next Wednesday. I feel fine about it now, trying not to dwell too much, I need to enjoy the next week of (hopefully) feeling quite well.
Hope no-one gets washed away in Storm Christophe x
@grannyp hope you enjoy your drive out this morning! It’s mad isn’t it, going to hospital as horrible as it is is the only socialising we get to do at the moment, almost feels like a day trip!
@Karden that’s great if you can feel some effect on lump. I can feel the tissue in my breast has changed and I have pain but it’s definitely not got smaller, so finger’s crossed the fact you can feel it’s shrunk is a positive sign.
One day, one appointment, one treatment at a time, we’ll all get through this x
You poor thing. How frightening to have to call an ambulance and go through all that. Very good news that no serious problems but I can understand how upset you must feel that the chemo has seemingly so far had no effect on the tumour. I am sure that your oncologist will be able to give you more information and hopefully reassure you. For those of you having chemo first it must be a constant worry as to whether scans are going to show any effect on the tumour. I am sure that you all just want to get the cancer removed from your bodies.
And so many of us seem to be dreading our next treatment. I really thought that when it came to number 3 I would be able to feel pleased that I was halfway through, that EC was over & done with & that there are now only 7 weeks to go to my final treatment. But I still feel that if I could run away now I would do. I just want nothing more to do with it all!!
Good luck with your chat with your oncologist and with your treatment. We can and will do it - but gosh it is incredibly hard and only those going through it know how hard.
Enjoy your trip out! 🙂 I hope your bloods are ok, mine will be done this morning too. I got a negative Covid result yesterday afternoon just a few hours after dropping it off.
I feel sure that my lump has reduced after 2 cycles as I am struggling to feel it now so will ask the consultant for her opinion. Hope it's not just wishful thinking.
It's interesting to hear that counselling was offered to you and this would be a huge support for anyone who is struggling mentally.
I will have a look at the Jennifer Young products, thanks for the recommendation.
Take care everyone. xx