Absolutelyannie, see if you can have another ec if they are stopping the d early. Because I had reaction to 2nd t I went back to fec for my 6th, worth asking the question ❤️❤️Shi xx
drummerswidow
thanks for your good wishes. have you had chemo first or surgery first. This BC is a real rollercoaster.
Last week I was eurphoric and celebrated with a meal out. Then yesterday this rubbish news. Anyway gotta keep going.
Hi DiKat and Sunnydaze
thanks for your info and support.
DiKat
I had 4 EC sessions before being changed to docotaxel or T (which seems to be the abbreviated term). After 2 EC there had not been much reduction and I felt like stopping the chemo and insisting on surgery. However, after a further 2 EC sessions I had in my surgeons words a fantastic result as tumor volume was reduced by 80%. I have my 3rd T session tomorrow and hoping maybe the same thing will happen. 3rd session lucky and hopefully reduce further.
It really did shake me up to hear a consultant oncologist on my phone but she wants to stop this T treatment after tomorrow's session.
I keep wondering what its size would be if they had given me 2 further sessions of EC without changing to another drug. Kinda panicking now.
That’s funny pastamissus! It’s a small world. I am having chemo at BGH, but I had my surgery at Livingston, St. John’s and they were excellent up there, when I finally got treatment. When you’re working in the Borders again and you feel like meeting up for a cuppa, let me know.
Sunnydaze x
Hi absolutelyannie
So sorry to hear you have had disappointing news. This bc really is S**t. I know you will be feeling rubbish right now but like Sunnydaze says you will get back up again. This bc gives us a strength we never knew we had. I know someone who had the same thing happen, she had shrinkage after her first 3 Fec and then the tumour began to grow again. She ended up having an mx and is currently 12 years cancer free. So were you meant to have 4 Docetaxel and are you still having Docetaxel tomorrow? My 26mm to 8mm reduction works out to be 70%. My biggest concern is my lymph node involvement. Whenever I ask how many are involved, they just keep saying multiple. I’m hoping to find out more when I get an appointment through with breast surgeon. My bc is in my left breast but I’ve been feeling changes in my right breast too. My latest MRI states benign changes in my right breast since last MRI in December. Although it states benign, it has been causing me major anxiety feeling the lumpiness. Is this what it’s going to be every time I feel every bit of fibrous tissue etc. I sometimes think a double mx would be the best way to go to reduce all of these anxieties but is that just a knee jerk reaction! I’m not in London, I’m on the East Coast in Lincolnshire. Sending you lots of hugs 🤗 Take Care xx
Hello Sunnydaze
when I am working, I work in Borders General Hospital one week a month
beautiful area
Hi Absolute Annie
Im so sorry to hear the news regarding your tumour. If it’s any comfort, I was on tamoxifen because of a delay in surgery ( not good enough, but that’s crap NHS cancer waiting times in Scotland for you)
This delay - diagnosed in August surgery in November was not good enough. My tumour did not shrink , just a load of guff really. After surgery my tumour was then upgraded from a 2 to a grade 3!! So it had probably grown under tamoxifen.... I was also given the “surprise news” that I would have to have chemo....and here I am. I had a mastectomy and immediate reconstruction at the time because I was told I didn’t need chemo.If you are going down the mx route, it’s not so bad I think if you can have an immediate reconstruction, if not and go for a delay, you are constantly put to the back of the queue because the cancer has gone. I know my surgeon bumped off a lady at the front of the queue who had been waiting for a delayed reconstruction to put me in place because my cancer was live. I felt terrible about this and the surgeon should not have told me this info, but I had already waited since August and November was approaching fast....
Anyway, the upshot of all of this is, if you have to have a mastectomy because of your tumour size, it’s ok. My diep reconstruction is amazingly good and hardly any scarring because I had it done immediately. Also, the breast cancer nurse told me that you can’t always rely on the info you are given pre surgery about the tumour. The pathology report after surgery says it all, so it could easily be better or worse than expected, I think. What ever way you look at it AbsoluteAnnie a cancer diagnosis is absolutely **bleep** for us all, but whatever they throw at us re; diagnosis, we cope and when the initial bad news disappointments have worn off, we just pick ourselves up and push ourselves forward to better days 💪🤞💪❤️
Yes, Donegal is stunning, especially the beaches - and it’s sunny and I feel good - (day 13 in the cycle) so thank you for your good wishes, we can do this . In the lines of the song by Chumbawumba “ i get knocked down, but I get up again”.
Btw, I am based in the beautiful Scottish Borders countryside, 25 miles south of Edinburgh.
Love😘 Sunnydaze xx
AbsolutelyAnnie
I’m so sorry to hear your news. It’s the waiting to see Drs to see what the next step is that is so awful for you.
I suppose they may say to have a mastectomy but you but you never know. It depends on the surgeon. I had no option as my tumour was big. They did talk about a lumpectomy but in the end my tumour measured 6+ cms and I had a lot of nodes involved.
Thinking of you though and sending virtual hugs. Xxx
MaryKamille DiKat Sunnydaze
bit of a downer today. Had ultrasound after 2 sessions of Docetaxel. found that tumor was getting bigger. and my oncologist is cancelling my last session so tomorrow is my last chemo session. I was over the moon as was my surgeon last week only to have this news thrown at me yesterday. Should have continued with EC as it seems that was working well for me.
I have allsorts going through my head now as I think this latest news might alter surgery plan. I was on target for a lumpectomy which really pleased me but now that the tumor is growing what on earth will my surgeon say.
Has anyone else been told the percentage reduction of their tumor.
MaryKamile
Have you had surgery already.
DiKat
You seem to have the same regime as I have. See the oncologist on Monday and then chemo on Wednesday. Are you in London
SunnyDaze
Hope you enjoy your trip to Donegal. That is a lovely spot to be in. I used to go there as a child. Enjoy your break
Thanks LB2
Good that you have got an idea when your radiotherapy starts. You will be starting around the same time I should be having surgery. I feel like I want to throw everything possible at this blasted disease and yes there are risks but feel like I have to take those risks to increase my chances.
Take care xx
That is great news DiKat, so good that this blasted chemo is doing it's job for you. I saw the oncologist on Friday and he booked me in for radiotherapy probably starting mid May. He talked about the risks but also increasing the chances of me "surviving longer". I am sorry but I am surviving this blasted disease, all along I have told everyone I have a really good prognosis, only one positive lymph node etc etc. Just brings it home that we are all statistics at the end of the day.
Good luck for Wednesday, hope the side effects are more manageble this time x
Will still have some node surgery, not sure of the extent yet Sunnydaze. The breast surgeon will go through all of that when I get an appointment through with her. Enjoy the rest of your break xx
That is fantastic news Dikat 😊😊😊 Will you still have a sentinel node biopsy during surgery, or will they now leave your nodes?
Enjoy your afternoon
sunnydaze
Hello lovely ladies
Just got back from Oncologist appointment. Bloods are fine for final chemo on Wednesday but more importantly he went through my MRI scan with me and I have had a good response to treatment. The lump in my left breast has reduced from 26mm to 8mm and the lymph nodes are clear. He said with 1 more chemo to go, hopefully the 8mm lump will reduce further. Phew 😅 such a relief. I’ve had loads of pain in both breasts and under my arms all weekend so had got myself in a right downer fearing the worst! Another good piece of news is that they are now allowed to give Pertuzimab injections alongside the Herceptin injections. I will be able to have both at the same time, which improves the efficacy of the Herceptin. This is only offered to people with node involvement as in a clinical trial it was shown to increase the proportion of people whose disease didn’t spread. Right, need to get my positive head on and get ready to take on this last chemo. Love to all xx
Thanks for the replies, this chemo is strange stuff. I had the bloody nose each cycle through fec and t until this one when...nothing! It still runs permanently though🤧xx
Sunnydaze
I had 4 EC. Then supposed to have 4 T but had 2 fortnightly and now 4 weekly at a reduced dose. Just lengthens the process but the end is in sight now.m
Sunnydaze.
It’s horrible isn’t it. Having mine weekly because of the SEs and had to have a break from it too. I’ve had my fingernails painted with gel to strengthen them and glue them together! xxx
I’m sorry to hear the “T” has been worse for you Drummerswidow. I have only had to deal with 6 in total. 10 must be hellish. You poor thing. Do you have to have chemo on a weekly basis? I hope things get better soon.
sunnydaze x
Drummerswidow, my nose bleeds all the time on T too, I'm also on blood thinners. Hate T so much. My last one 23 April as well. Nails are brittle, ridged and discoloured but no pain or tingling as yet. Just wish the never ending headache and feeling so low would pass. X
@Drummerswidow wrote:Sunnydaze
I have had a bloody nose nearly all thru chemo. I think it’s cos I’m on anticoagulants though. I have very dry hands and painful feet. I think the T is a lot worse for me. i’ve Been suffering. Having cycle 8/10 today. It should have been my last one today but now not finishing till Tuesday after Easter now 😟😟😟. Radiotherapy starts 20th May. Xx
Hi Kitkat18 and everyone
Touch wood, I haven’t had any problems with sore fingers and nails. I’ve had a little bit of tingling now and again in my fingers but nothing major. Like Sunnydaze, I’ve had a bloody nose for about 5 days each cycle but it doesn’t bleed out, just there when I wipe it. Good luck for your last cycle. We are getting there xx
Sunnydaze
I have had a bloody nose nearly all thru chemo. I think it’s cos I’m on anticoagulants though. I have very dry hands and painful feet. I think the T is a lot worse for me. i’ve Been suffering. Having cycle 8/10 today. It should have been my last one today but now not finishing till Tuesday after Easter now 😟😟😟. Radiotherapy starts 20th May. Xx
Hi Ladies,
I get sore finger nails too, just under two weeks in. Nothing too bad and occasional pins and needle in my hands,, but only fleetingly. I think one of the worst side effects for me is inflammation. Blowing up like a balloon, especially around my waist (a surgery site, bloated and tender). My feet are also imflamed too in that they throb and they get very tired when walking, I have to wear my arch supports again. I have previously had problems with my feet. Chemo seems to like to find my weakness I think... Oh I also get a bloody nose for about 4 or 5 days too.
Sunnydaze x
Hi Kitkat, yes I have sore finger nails too. Unfortunately it starts after about a little under two weeks after T chemo for me, just when I think, yay I escaped most side effects. I never had the neuropathy though. Good luck with your final cycle!
Karaoke tune for this evening and I want a full chorus from all of you in your kitchens with best Pricilla queen of the desert moves to Gloria gaynor ‘I will survive’ 😘🤪🤪🤪💕💕✨✨Shi xx
Jayne and everyone 💪💪💪this is the bit that you are I’ve flipping had enough of this and when some bright spark goes nearly there, they mean well but have no idea, keep focused and it’s a bit like the Malcolm maclaren double Dutch video, you and the rest are double dutching together to the finish line 👭👭👭👭well done my beautiful amazing dec thread you ❤️❤️And look after each other so kindly. 💕💕✨✨Shi xx
Its great that we are getting to the end of chemo, my last one is Thursday hopefully and I can’t wait to begin to feel better. Really looking forward to being able to walk and breathe at the same time! But I wondered if anyone else has sore fingers and nails? I have had the neuropathy throughout T but they have improved in week 3 up til now and I am really struggling to do the simplest things....
Hi Ladies,
Great you got to sing 🎤 in the Karaoke Jayne, everyone needs a bit of fun 🎉 Life is for living and all of that I firmly believe that.
I’m currently in Belfast, getting my kicks from spoiling my teenage daughters with new clothes. It’s been great making them feel happy and looking “cool”. I felt sad underneath it all though ( they didn’t know) but I kept having negative thoughts about “ what if I wasn’t around for them “and how that would blight their lives. It’s bloody awful really... We fight back tears, but we have to keep going forward and enjoy life to the max, not dwelling on negativity, but it’s hard. I keep having to “re-focus my lense” so to speak and see the good times in front of me. It’s hard when you feel fat, bloated, knackered and bald though. Ha ha, 🤣🤣🤣 Nearly there. Once last push to chemo6 and then working on rebuilding my life, finding a “ new normal”.... Whatever that may be.
Sunnydaze xx
Hi Jayne1966
Yes, try and upload your video. Could do with a lift, having a downer day 💕
DiKat (and everyone else),
Just catching up and I love the response that you gave to your friend who said its nearly over. That so sums up every minute of my waking thoughts. I too am worrying as you know and also do not want to spiral. Having had THP on Monday I am now at rock bottom again and have no willpower to do ar think anything positive, its so bloody hard. I like the idea of the podcasts as mentioned by a few of the ladies here, all I need to do is find my ipad, the charger and a little bit of "give a **bleep**" and I will be well away.
Sorry for being down, positive note, on Monday last was chemo #6 after which I went for a curry with my patrner and a group of friends (as we always do on Chemo day) and we did an impromptu kareoke (we know the owners well) where I sane mana mana with my partner much to everyones delight. If I can I will upload it so you can all have a laugh - I think we all need one as it seems we are all getting to the end of this Chemo journey and having many emotions and SEs. Its fantastic to hear some of you are finishing Chemo - and to start to hear more positive posts now hopefully of recovery, new life, new adventures, successful surgery etc etc will be fantastic.
Love you all
Hi absolutelyannie
Epirubin is still extensively used and will continue to be so. It is a once in a lifetime drug - which means they use it, but only once for anyone during their lifetime. They should be doing heart checks anyway before they start something else!
Good luck with your surgery. I found that a lot easier than Chemo and could see the point of it!
MaryKamille XX
Thank you for the advice, DiKat. I'm investigating various suggestions now. My hepatology nurse (coincidentally I had a monitoring call from him the other day) has been the most helpful. He has instigated the dietician referral which no-one else has done and it is nothing to do with his department! Either he's new or very dedicated - or perhaps he senses the desperation in my voice!
Hi KitKat
I will look for protein shakes online, many thanks. I was told to try Complan while waiting for dietician but they only have sweet flavours - strawberry and chocolate - in the chemists. So, maybe I will try online for those, too. Someone said Complan do savoury as well.
The oncology nurse did hurry something along (she was much nicer than the registrar) and the next day I had some sample soup packets from a firm called Aymes. They don't have enough calories for my needs though - only 250 and I can only eat half a bowl. Tried the chicken and vegetable.
I'm back on the 2mg Domperidone tablets this and last week. (Steroids) I hardly used them during my 4 previous Chemos and you are only supposed to take them 3 times a day. They give me relief for about an hour from the nausea and I try to throw something down during that period.
Sunnydaze
Forgot to say, have a fantastic holiday. It’s well deserved and hope it’s a good distraction xxx
Morning everyone
Thanks Sunnydaze for the information on Tara Brach. I will definitely check out the podcasts as I’m finding I am getting anxious about the future and don’t want to get in a negative spiral. I saw someone yesterday who said I bet you’ll be glad when this is all over. My response was that it will never be over. She didn’t really know what to say to that! I’ve got bloods and Oncologist on Monday to find out if my last chemo will go ahead on Wednesday so fingers crossed. I do feel cheated not having a good week though. I’m still taking antibiotics for ear pain and still suffering from diarrhoea since taking them. My tastebuds have taken a dive again too, they improved for a couple of days but back to slimy salty foul taste. Onwards and upwards. Have the best weekend you can everyone xx
Hi KC72,
Thank you for your reply. It is scary, but we can’t live our lives letting our anxieties take over, easier said than done. If you do seek out Tara Brach, I think she is a qualified clinical psychologist as well as a meditation expert, she really does help with teaching you how to meditate through guided meditations and to visualise positive outcomes. All very calming reallly. I think once those that haven’t had surgery yet will feel much better, it’s a walk in the park compared to chemo. I had a mastectomy and immediate Diep reconstruction in November and chemo in December. After surgery you have to believe that the cancer has gone. No more. It has been removed and chemo has cleared it up. Guided meditation and visualisations help I think.
sunnydaze xx
Thanks sunnydaze for tip from your friend re ‘the fear’. That’s really positive, helpful and manageable tip.
I’ve 2 more of the T to go but having had mastectomy, recon, am starting to be hit by end of treatment nerves. Don’t get me wrong know team doing everything for me, but the fear of it coming back is lurking given my stats. I know you can’t live a life with what if and am positive in my general outlook but that doesn’t stop me being scared about the future and my over awareness in my body’s look and feel.
To to those who’ve just finished your chemo, very best wishes 🍾😊⭐️
You can buy kombucha in places like healthfood stores. I love the taste, it is tangy, better than sweet soft drinks, and I could enjoy it through the whole chemotherapy. But it is quite expensive.
Mmm I have read about kombucha and it’s properties. Whereabouts can you buy it Wahini . I don’t think I am up to fermentation yet.
I like to drink Kombucha (fermented tea) but I have stuck to store bought. I also brew my own and I tried a few glasses but I was not confident it wouldn't make me sick so I didn't enjoy it. My brewing vessel looks like it houses an alien life form.
The only things I was told to avoid were unpasteurised milk and cheese!
Hi LB2
Thanks for your advice re; probiotic yoghurt. I have had two lots of thrush and been on one course of antibiotics. I ate strained Greek yoghurt and yeovalley yoghurt all of the time before chemo and I miss it so much, so I’m going to go back to it today! My body has been used to it for years and I’m fed up of eating crappy “unlive” yoghurt.
Sunnydaze xx
Hi Ladies,
So great to hear that most of us are now dealing with the end game of chemo🙌. This is great news. I too have only one more “T” to cope with. It’s neen tough, but better than FEC.
I have had a few days of taste changes, only really days 5-8 . It’s not very nice, so it must be tough if it’s a constant thing. 😦I think if you are having additional targeted drugs alongside “T” it may exacerbate the taste bud issues.
I have had thrush in my mouth on both occasions (white tongue) but Fluconazole has helped. I was having issues with a swollen throat too. My onc suggested I stop using the green coloured mouth wash and just to use a teaspoon of bicarb in a pint of cool boiled water and rinse my mouth with it instead. I have to say this has helped my mouth loads. The green mouth wash is so astringent. My taste has also improved since stopping using it too, but that may just be a coincidence.
Re; hats and wigs. I go bald in the house, as I get more used to my baldness, although my fuzz is now growing.😊 My eye lashes are still here and most of my eyebrows, they are thinner, but I hope I don’t lose them in cycle 6. It could yet happen. I haven’t been able to get to one of those beauty courses because it isn’t offered locally, only at Maggies in Edinburgh, which is a bit of a trail tbh.
I’m managing though. 🤞
I am now on day 9 and tomorrow I am going to Belfast and Donegal for a holiday with my family for a week. Hurray. I have checked with my GP and I am ok and well enough to go. 😊😊😊I hope all goes well, a bit of a risk, but we are travelling by ferry, not flying and it’s still in the UK and I hope nothing unravels with the Brexit shenanigans! I just decided the psychological effects of going on holiday would give us all a lift. Let’s hope I continue to improve as I move into my good week.
I do worry about the future and recurrence of cancer, especially when I read my path report. It’s not bad, but once you’ve had cancer, it’s very scarring. 😢 I have a close friend who is now 12 years breast cancer free and she has given me good advice to help coping with fear.
If she is hit by the “fear” she says she does one thing that particular day that is anti cancer, whether that be exercise, eat good “anti cancer food” or meditate. It helps neutralise the fear.
Exercise and diet is the big thing, I guess.
Meditation has helped my friend a lot and and me too . I recommend the free “insight timer” meditation app. If you are into meditation. I also recommend any of the free podcasts by Tara Brach. They are free on the iPhone podcast app. I have listened to quite a few of the “ fear,anxiety and healing” ones and they really have helped me to calm my mind and think positively. Maybe they are not for everyone, but they have definitely helped me when I have had bad emotional days.
Ok ladies, wherever you are in your chemo journey, I wish you well. I enjoy reading your helpful threads and I send you all a cyber hug. Fight the good fight. We are strong and healthy. 💪 Chemo ensures the cancer has been cleaned out, surgery does too. We have a chance to start again a “Spring clean” of our bodies. Cancer be gone!!
sunnydazeX
Wow the December thread has really got active again. I am with you on the hats/wigs - too uncomfotable and hot. I also cold capped and I would say I have lost 75% of my hair with one T to go. Have bald patch on top with hair just growing around the sides and my fringe. I am still getting away with wide head bands but once it starts to grow back I guess I will have to have a pixie cut to make it look respectable. Similary I have a couple of eylashes hanging on but mostly gone. I walked to a friend's house yesterday and with the wind in my eyes they were streaming when I got there. Tissues always at the ready for that and the nose!
I saw a couple of days ago talk on probiotic yoghurt. I am a microbiologist and work in the dairy industry. I was surprised to see probiotic yogurt on the list of foods to avoid - all yogurt has live bacteria in it. I would say if you have had antibiotics during chemo it would be good to have some probiotic yogurt at the end of the course as long as it is the same brand that you were eating before chemo started. This way it would be considered your normal flora and will help to put back some good bugs. I would avoid it if you have never eaten it before. Just my opinion, I am not a health professional!
School holidays here so we are off to the coast for the weekend, good to have a change of scene. Good to see some have finished chemo now, not long to go for all of us, x
Hi Daffydilly
Im exactly the same with hats & scarves, just don’t suit me at all. I’ve never suited hats to be honest. I find my wig hot and can’t wait to take it off when I get home. Encouraging news about the tast buds. X
To all those struggling with dodgy tastebuds, I’m now 4 weeks after last chemo and they are approx 80% back to normal - still a bit erratic but most things are now edible, if not always very pleasant.
However, hair is another matter. Despite cold cap still falling out in handfuls and very little left on top now - when will it stop - might as well have lost it all in the first place. Dread the summer as think wig will be too hot but hats & scarves look awful. Always seem to look ok on other people but not on me. Guess I’m not the only one feeling like this?
Hi MaryKamille
I got it wrong - just 2 more chemo sessions to go. Then surgery then 3 to 4 weeks radiotherapy subject to the results of an ultrasound that I will have on Monday next.
I have had Epirubin - didn't know it was no longer used so will ask for a heart check. I am now on Docetaxel. Just want to get to surgery!!!
Postamrs 👍👍👍💃🏻💃🏻🕺🕺👍👍👍well done 🛎 🛎 🛎 😁😁marykamille phone your rapid response team or speak to your breast care nurse or combined day unit team aboutvthe problems eating, you also need to get weighed before next chemo, don’t try and battle through, the teams are there to help, support and look after you ❤️💕you just need to speak to them direct 😘😘 also try the someone like me option on here there will probably be other people too who have experience d the same💕💕✨✨Shi xx
DiKat
You are right - it will be radiotherapy once the surgeon has seen the ultrasound that I will have on Monday. He said though that he would book me in for lumpectomy and proceeded to tell me about at least 3 weeks radiotherapy maybe 4. I assume the 4th week would be the booster rads that everyone talks about. I am 55 so dont know whether age is a factor when deciding about the 4th week.
also have to have some of the lymph nodes removed to check that the little buggers have not travelled.
I saw people talking about probiotics. I have had plenty of Damone yoghurt and was not told not to eat. Maybe it is because I told oncologist that i have no problem with food!!!
Marykamille
so sorry you are feeling so tired and rubbish especially when you would be expecting to be in your good week! I really feel for you on the food front, it’s miserable when nothing tastes nice and the texture issues must be making it worse. Would your GP be able to prescribe you the ensure drinks that have all the extra nutrients in for people struggling to eat. There is also the complan that you can get which is similar but in powdered form. Like has already been suggested smoothies are good. They are also nice made into lolly’s if you could get some lolly moulds. One of the few things I can taste is ripe honeydew melon. Hugs 🤗 xx
Hi gocat
Im day 16 today. Tastebuds have improved slightly over the last couple of days. Not everything is foul, spicy food seems to be worst. My eyes started to get wet and gritty around day 12 after first T and again after this 2nd T around the same time they have started to feel wet again. My Gp prescribed some antibiotic eye drops last cycle but when I told Onc he said it was a side effect of the chemo and I didn’t need the eye drops as they weren’t infected. I’m just putting up with it this time but struggle if I put any eye make up on. Definitely can’t wear mascara on the few eyelashes I have left xx