Thanks Holeinone, really appreciate you replying. I think I should be fairly well set up by the sounds of it then. I have gelclair and difflam as had the mouth problems with Fec, particularly first cycle. I'm currently taking alternate paracetamol and ibuprofen on some days as Filgrastim has caused me prolonged bone pain. It's 15 days since I last had a Filgrastim injection but my Oncologist says this can happen to some people. I have ongoing issues with my digestion and bowels, IBS and diverticular and stomach ulcers so can't wait to see what happens there!
How many Filgrastim did you have with T?
It's taken me about 2 weeks to recover from each Fec, slightly longer with this last one so at least I'm used to that! I just desperately want to avoid another hospital stay...the food played havoc with my digestion!
Thanks again for reply xx
Tbird, so sorry you are struggling at the moment, it's not surprising as we have a lot to cope with. Congratulations on your last T, I'm kind of looking forward to mine but not the thought of one more round of T.
Are you having surgery or radiotherapy next?
Good luck with the next stage of your treatment xx
Hope you don't mind me responding, I'm having my third and final T with Herceptin next week so thought I would take the liberty of answering your question .
I had Herceptin as an injection, followed by the infusion of T. I was fine for a couple of days, I believe it's usually around day 5 or 6 before T kicks in but with me it was 3 (I'm obviously not standard!!).
I will warn you that I didn't cope well with FEC or T so my account might be worst case scenario!
You will get lots of steroids to take the day before, during and the day after, you might get facial flushing and disturbed sleep. I found I got more sleep on T despite the steroids.
You will need pain relief, this I found is due to the three pronged attack of a double first dose of Herceptin (they don't tell you it's double, and it makes a huge mark on your leg!), the T, and the filgrastim injections. I'm pretty good at coping with pain but at 6 days in I was in a lot of pain, and had to make do with paracetamol. The nurses advised I could take paracetamol with ibuprofen for second and third dose. The aching muscles and joints has continued though, I understand this is possibly lack of use of limbs and Herceptin/chemo.
Mouth, within a couple of days my mouth felt and looked like I had gargled with acid, red, sore, and painful to eat, also mouth ulcers. The nurses sorted out some gel sachets (gelclair) and a great mouthwash for me (benzydamine), and second T was much better, no ulcers at all and a manageable mildly sore mouth for a fortnight. You do get a horrible metallic taste though, which lasts for at least a fortnight.
Digestion, had terrible constipation, again oncologist wouldn't give me anything as it can quickly turn the other way, but nurses sorted me out with stool softener and senna. Everything was much better on second T!!!
I have to say I have taken longer to recover from the T, I'm two weeks post T2 and only just feeling normal with less side effects.
As I said, I've reacted badly to all the chemo drugs so my account really is a worst case scenario! If you need any further info, just ask, and I hope everything goes well for you with no more delays xx
Im having first T next week with Herceptin and pertruzimab, was meant to be yesterday but neutrophils only 0.2! I know we all react differently but do you have any advice on how to prepare. I’ve had a rubbish time with FEC so may have all the necessary to alleviate side effects? Thanks x
This is the second attempt to post, where's the robot gone when you need it.
I haven't posted for a while (black dog came calling) back to normal now, whatever the new normal is.
I had my last chemo today and my picc line removed, it was a fabulous feeling. Because of all problems with doctaxel first T I am prepared with loads of preventative meds so hopefully no visits to Casa nhs this time.
I have been reading all of your posts and see a lot of you ladies are having a bad time on T, but we can do it we are stronger than side effects.
Stay safe love Tbird xx
Sorry not posted in ages with kids birthdays and weekly blood tests and chemo I've been struggling to keep up, so catching up with all your posts. Found everything so much more tiring recently.
That's really lovely news about your new granddaughter Tracybev and well done getting through chemo!
Kateday sorry to hear you've been so poorly, thinking of you and hoping you're feeling better.
Holeinone, so sorry to hear you're struggling. Just one more chemo to go though and it's done and hopefully the side effects will ease.
I went to the Look Good Feel Better make-up session last week and despite being exhausted after driving there and back, it was well worth it. I agree with Pigeon, I'm not someone who would normally wear much makeup but now my eyebrows and lashes have nearly gone I found it really helpful and encouraging to show how to use makeup to boost my confidence and met some lovely ladies there too. I'm hoping to go to the yoga session at Maggie's tomorrow but will have to see how I feel as I've caught a cold which has made me feel more exhausted.
Thinking of you all, we can do this! xxx
Hope you are all well.
Tracybev, congratulations on your last chemo and a granddaughter! What are the odds of her being born on your last chemo day! Good luck with radiotherapy, think I will be starting that in March sometime.
Kateday, hope you are continuing to improve and can get your next chemo out of the way very soon.
Pigeon, hope you are avoiding the T side effects, the course sounds great, and I'm not a girly girl either so not sure all the goodies would be of use to me. I might look into going so thank you for the info.
I've been having the nasty T side effects and feeling sorry for myself, not sure if I am pleased there's only one more chemo to go or just so fed up I have to go through another round, it's been tough! Fingers are so sore, like someone has hit them all with a hammer, I struggle to get dressed without pain, and I have capilleries bursting everywhere so am now sporting a face of red freckles, nice!
On the good side, I have mouthwash and laxatives etc so am fully prepared for the final round (cue music!)
Take care everyone xx
Congratulations Tracey what a special day
clarabella the port was because my line was taken out
well anyway it turns out no one booked me to have one and only one person on all Leicester hospitals do so the next they could offer me was 18th March
so I will have another picc again waiting for appointment of only my veins would hold at least one more chemo 😔 so all I’m all this will put me a whole three weeks behind meaning I won’t finish till April
I will now have reduced does as onc thinks is safer after how poorly I was xx
Congratulations Tracy!! 🎉🎉🍾🎉🎉. How fantastic having a granddaughter and finishing chemo! What a lovely Valentine’s! So funny you and your daughter were in the same hospital at the same time. Hope they are both well. Hope this cycle goes as well as the others, sounds like you have been lucky with side effects but sure chemo doesn’t have to be tortuous to “work”. Have fun celebrating xx
Had my last chemo session yesterday morning, felt quite emotional watching it count down to zero as my daughter was on the floor above me she'd given birth a couple of hours earlier to my beautiful granddaughter and couldn't wait to go up and see them 😍. So last night opened a bottle of champagne for a double celebration !.
Sorry to hear some of you finding s/e of T hard and probs with picc lines I seem to have managed pretty well.... now worrying has the chemo worked as coped with EC and not had much bone or joint pain on T just some minor mouth issues.Given my last pack of injections was hoping didn't have to take any more🙄 now onto the next phase have a scan and assessment booked for today in radiotherapy and first session starts 6 March.
Keep going ladies we are nearly there💪
Hi Kateday, second what Clarabella said. I had my port put in at the beginning because I am so needle phobic, I had already been a mess having cannulas for MRI and CT scans before starting chemo so doctors thought it would suit me better. I do remember having the heebie jeebies about it in November though and asking on this thread if anyone else had done it yet.
I had an assessment when it was all explained and then implanted a week later. It is Day surgery and local anaesthetic but it is the full operating theatre procedure which I found quite scary as I had never been to theatre before - but I think you’ve already had surgery so maybe less daunting for you. However was totally zonked even if only local and didn’t feel anything.
I am really glad I did it, has made taking bloods and chemo much easier but it is a bit of a palava to get it fitted so wondering why they suggested it to you when you only have 3 cycles to go, do they think it’s worthwhile? It also has to get taken out (I haven’t had my breast surgery yet so they can take it out when I do that in one go). Wouldn’t it be easier to have another PICC line, especially as you might have another round of chemo before you get a date to do the port?
Talk it over with the oncologist tomorrow.
Clarabella thank you for reply
I’m gutted as only have three chemos left this weeks delayed
they removed my pic thinking that was causing my infection which in the end it wasn’t
I meet my onco tomo so hopefully get some dates through , to continue , I’m on blood thinners so I presume I will need to stop those prior to this
I’m so glad to hear it was under sedation , out of all of this being fully awake for port scared mw xx
Glad to hear you're feeling better. I'm guessing your next round of chemo was delayed?
I have a port, I know what you mean about the procedure though as it just feels like an alien concept having this thing stuck in side you.
My doctors went with port straight away as it was taking several attempts to find veins in my hands or arms for any bloods to be done or to get a canula in. They even left me in a hand warmer for half an hour to not much success.
I had my port fitted the day before my first chemo (EC) and for me that was the worse one so far in terms of aches and pains. Now I'm on Doxetaxel one of my "pain" sites is the collar bone on the port side.
My port is on my "good side" and was fitted under local and sedation - although to be fair I must have been pretty out of it as I can't remember anything of the procedure until the last 5 or 10 minutes, which was just the cleaning up bit. It was done as a day patient but I had to have someone with me for 24 hours after and I wasn't allowed to drive for that time either (apparently it would be the equivalent of drink driving).
I have two scars from the port, the smallest is a cross on my collar bone which is where they fed the tubing in to the vein. The largest one is above my breast and in line with my arm pit (although I guess positions will differ) . This is where the port itself sits. I can feel the port if I prod it and one half of mine kind of sticks out a bit on one side.
It does take sometime for it to settle down (maybe 2-3 weeks) and for you to get use to it. But once settled you don't really know it's there. I did have bra issues until it settled down as the placement of mine seems to be where all bra straps are designed to go, so it was a struggle to find straps wide enough so they didn't catch it or push it.
Hope this helps and you continue to feel better xx
feeling better now home just exhausted but think that is the chemo, do any of you have a port, I will now be getting one as they removed my PICC but the look of how this is done scares me a littlexx
Liloc, I can definitely sympathize with feeling like a 90 year old, I feel exactly the same in the first week or so after T - but agree that I’d take it over the nausea/sickness with FEC!
I used to do a lot of walking/hiking before I started treatment, and am really missing that (especially with the sunny weather we’ve had the past few days), but like you, I get so tired so easily... I had to have a rest after doing the hoovering yesterday!
Holeinone, glad to hear that this round is being kinder to you, gives me hope for my next round. Re: Add Aspirin - when I last saw my BCN, she included a leaflet for that trial and another one to do with hormone treatments in the pile of leaflets she gave me, but no one actually spoke to me about it. My hospital has a research nurse who coordinates signing people up with trials, I’ll probably speak to her about these when I finish chemo.
Well, I’ve just got back from a Look Good Feel Better session, and I must say, I enjoyed it! I’ve never really been a “girly girl” who wears a lot of makeup, and was a little nervous about going, but they show you how to put it on with quite a natural look rather than looking like you have a face full of makeup. Anyway, it’s nice to look a little “normal” again 😁
Take care everyone x
So sorry you are suffering with the awful bone and muscle pain, at least you have co-codamol to help. I concur with all your symptoms, I found it incredibly debilitating, unfortunately The shuffling around the house is not a great look, especially with no hair and lashes and sparse eyebrows, sexy, not!
Yes, second one much easier, not sure why, but I'll take it! Hope it gets easier for you too x
Take care ladies xx
Hi all, Day 5 of my first T cycle and in quite a lot of pain, my muscles and bones are stiff as planks and I feel about 90 years old. 👵🏽However not as much nausea as with EC which was always the killer for me, so I think with the help of co-codamol I can put up with this. Didn’t consider working this week though, think that would have been a step too far!
Complete lack of energy and shortness of breath though, don’t know if that’s because I’m not getting any exercise, bit of a vicious circle though as I haven’t got the energy to even go for a walk... Have to do things in short bursts. My son’s off to Iceland on a school trip this weekend and I wanted to get him packed just in case my immune system packed up on me later in the week. So managed half a suitcase and then had to lie on his bedroom carpet giving him directions on what to put in his toiletries bag... 😂
Kateday, glad you’re home, hope you’re feeling ok this week and are making the most of the rest before your next cycle, frustrating that it’s delayed but we’ll get there.
Tigerlilli, glad to hear the colonoscopy results were all clear.
Tbird, hope you hear when you can see the oncologist soon but try not to get too stressed about the dates, it’ll fall into place. I do sympathise though, we all want to get this over and done with as quickly as possible.
Holeinone, glad your second T is easier so far, that gives me hope!
Have a good evening!
Ive just been reading about Kip being asked to go on the Aspirin trial. She has started discussing it in the May surgery thread. Hope that helps x
Just popped in to report that at the mo I am finding T no 2 (with Herceptin) doable. Not so much pain as yet, that might kick in tomorrow as I am day 4 after chemo! I've cheered myself up by buying a couple of ear cuff things online so I can flash a bit of bling with my new short hair (when it grows!). Might even consider colouring it for the first time too! I understand that there is something called chalk colour I can use? Not a clue!
I started a thread somewhere else about Add Aspirin trial as I've been asked to go on it, not sure if that is bad or good, if anyone has any info, please share!
Hope everyone else is doing OK, we must all be nearly there on this hideous chemo journey?
Take care ladies x
Kateday, so pleased you are home, hopefully you can catch up and get back on track with your last few chemos, like you say, nearly there . Wow, sounds like your hair is doing well, I'm a tad jealous, checking mine every day but mm growth is a bit like watching paint dry!
Tigerlilli, really pleased you have the all clear after colonoscopy, you really didn't need that after all we are going through. Did the bleeding start on T? One of the oncs I saw said it causes broken capilleries, I have had minor nose bleeding and mouth on T and also broken veins on face. Second T has not yet caused the same issues so fingers crossed for you, and yes, also floored by T, on my second one now and propping myself up on the computer! xx
We can do this girls xx
Hi Ladies I have been off to have my colonoscopy due to bleeding from the rear end .... Delighted to say that it was all clear !! No nasties lurking. What a relief. I can see that we are all finding the T really tough. I hope that this time around I am a little better prepared and handle it better... It floored me for 10 days last time. Just keep thinking that there's just 2 left.
A huge well done to everyone who's been in hotel NHS. It's tough but we can all do this.
I’m home now
yes infection but they couldn’t find the source
let me tell you ladies of you feel unwell call the line
sunday morning fine lunch time felt unwell took temp 36.7 by 4.30 it was 39.4
they removed my PICC just in case so now waiting for appointment for a portacath
My Monday chemo delayed not sure till when see oncologist Friday
I was given the injections with T and five as I had with Ec
my hair has been growing a while so now have my whole head covered but it’s nearly white 😂😂
were nearly there ladies well I still have three to go but hey nearly there xx
Hope we are all enjoying a hospital free albeit windy and wet weekend!
Liloc, feel free to join in with hair/no hair shampoo chat, it will soon be growing, and a bit of massage might help it along? Your drug pack sounds different to mine, how funny that there appears to be no standard kit? You might notice more mouth issues with T, and I have had constipation all the way through, was given fabulous mouthwash by chemo nurses, who also gave me something to soften things up in the bowel dept, that's working too and I feel lighter than air! (OK, maybe not but I feel better without being blocked up). I was floored by T on day 2/3, and the culmulative effects of previous chemo appear to be kicking in, making recovery from these later sessions so much slower
Tbird, fingers crossed your last chemo goes as planned, nearly there!!! Not nice for you to feel that at this stage everything is still up in the air, rant away my dear, we understand!
Now I've fixated on hair growth, I'm also worrying myself silly about recurrance, trying not to bother hubby as he gets upset, but my mind won't leave it alone, bit of a Debbie Downer this evening
Stay well ladies
so sorry to hear some of you are suffering with T. It's hard but keep going the end of chemo is near.
im still not sure if I'm having T on the 20th Feb (should be my last one), or just the targeted treatments like last session. My liver scan was good, no problems, so realistically I should be able to have the T, but still haven't had a date for oncologist review which I normally have the day before chemo. My head is spinning because the surgeon has given me a date for my surgery 20th March, but this can't go ahead if I don't have any treatment on 20th Feb 😱😱😱😱😱. I also have to sort out dates for pre operative assessments, a week before surgery, which doesn't sound a lot to do but at the moment it is a lot. If my chemo/targeted treatment is cancelled on the 20th Feb because I haven't had a review from oncologist then I have to contact the surgeon to cancel my operation, contact nuclear medicine to cancel my radiation injection, then rearrange all this once I know when the treatment is (you'd think the hospital would do all this, but apparently they don't at my hospital). I'm scared silly about the operation already and now with pressure of not knowing feels like "the straw that broke the camels back" 🐫🐫.
My BCN tried to find out what was happening with the oncologist review, and was told the oncologist was available for her clinic, but she didn't have any colleagues available to do the clinic with her, so she might have to cancel her clinic. 😰 No clinic no chemo.
Sorry about my rant ladies, it's all I seem to do at them moment.
love Tbird xx
Back from my first round of T a couple of hours ago. Ate some pasta bake my sister had made me as soon as I got in in case I started to feel funny but ok so far, although exhausted. Have been reading back on all your recent posts to see when side effects kick in (the proverbial bus 🚍🥴) and it looks like Day 4/5, is that right?
Surprised by my drug pack this time though, just one box of Domperidone for anti-sickness as and when, compared to 5 different drugs with EC and a box of co-codamol capsules to take if I get joint pains. That’s it, no steriods, etc (although I had a steroid on the IV before chemo). Have got 3 days of injections for Days 5,6 & 7 to boost my white blood cell count but the oncologist said that was only because of my neutropenia history, they didn’t usually give out the injections for T. So feeling a little bereft of medication, hopefully it’s enough to get me through (have I become a drug addict in the last 3 months???💊😜).
Holeinone, well done on planning to work this afternoon, I was really dozy in the chair and still feel totally spaced out so no way would I feel up to any work. Typing this and thinking, wonder if I’m making any sense?
Kateday, really sorry to hear you’re in hospital, is it an infection issue? Really hope you’re well enough to come out soon, know you have your daughters at home so you must be missing the family. It’s such a bummer but keep in mind they wouldn’t keep you in if it weren’t in your best interest. I had a rap on the knuckles from the oncologist for not going to A&E in my last cycle when I had temperature spikes so it’s been put on my records that I am a naughty girl so will have to go in this cycle if I start feeling shivery again.
Afraid I haven’t got enough hair to join in the shampoo conversation (shaved in first cycle down to little spikes, they’re softer now rather than bristly but still not long enough to classify as hair).
Love to all xx
Hi Pigeon, thank you for the good luck, it must have worked as everything went without incident and I'm home now with some work lined up for the afternoon to keep me out of trouble.So far so good at the mo. Although if last round is anything to go by I will be OK until Sunday. Hoping body is used to it now and I did notice the Herceptin dose was tiny compared to last time, so that could be a factor!
Nurses overrode oncologist and gave me mouthwash plus sachets for if I get too many mouth ulcers, also told me I can take ibruprofen as well as paracetamol as I should not be left in pain. And they have given me two medications for bowel movements as again I should not be left unable to go to the loo!
Hair: my eyelashes and eyebrows started disappearing end of last FEC and start of last T, not many lashes left but with a bit of eyeliner it's not noticeable. Eyebrows I managed to find an old powder kit and have been drawing them in, still have half the brows there but getting used to where they are!
Shampoo bars, I was going to make a trip to the nearest Lush (Worcester I think) but remembered being overpowered by the smells and scents of the shop, so tried the Folk soap on a whim. Have to say hubby does not smell like a tarts boudoir and the scent lasts but is subtle, he can smell it on his skin at the end of the day so it is possibly having a deoderising effect too. Plus he isn't having to use moisturiser on skin or conditioner, although we will buy a conditioning bar. I like the smells as they are quite herbal, not girly, but we have chosen some of the more masculine scents! I do intend to try the more honey milky based ones too as we want to use them everywhere. I did notice the Folksoap shampoo bars are over 100g for £4.15 (or three for £10) and so considerably cheaper than Lush which I think are £7.50 for 55g. I'm usually swayed by money! We bought the nettle, flax, oat shampoo bar, the French Green Clay castile soap and the mens Sandalwood and patchouli soap for £10 plus postage of £3. Cost wise, I think we can buy all of what we need for around £36 and it should last us more than a year. I'm now looking at soap dishes to put them on! Another thing, she does do mens beard stuff and shaving soap, hubby very eager to try as he has just switched from disposables to a proper handle with replacement blades as it is more eco friendly.
I've been asked to go on the aspirin trial, anyone else?
Take care and stay strong ladies xxx
Oh no Kateday, sending you healing thoughts, and hope you get to go home soon!
T really is awful, I seem to have got off lightly when I had a reduced dose last round - this round with the full dose, I feel like I’ve been hit by a bus! Especially my legs, and my lower back 😖
Tbird, dont worry about sounding vain - between the bald head, the round flushed steroid face, the missing boob, and the weight gain from T, I feel like Humpty Dumpty and am definitely looking forward to my hair growing back and starting to look normal again 😂
I also had some hair that didn’t fall out from the FEC (I shaved it to a #1) and the rest of it it has started growing back a bit since I finished FEC, but I was wondering about it too - is the T going to make it fall out again?? My eyebrows and lashes thinned a bit towards the end of FEC but haven’t changed much since I started T, but I heard that T makes these fall out too?!
Ive been washing my head with E45 wash, as it keeps my scalp nicely moisturised (I don’t have enough hair for it to make it look greasy), and had been planning on getting the Lush shampoo bar recommended by some of the other ladies for when I finish chemo, but I’m really liking the look of those Folk Soap bars, Holeinone! They look lovely, and I would much rather support a small business! Do they smell nice?
Hope everyone is coping well with their treatments, spring is coming and chemo will be over before we know it! 💪💪 and Good luck for round 5 today Holeinone, hope it’s kind to you 💗
I'm currently busy, busy, hyper, hyper due to massive steroid intake as I'm T no 5 tomorrow
Kateday, oh no you poor thing! I agree with you, T is really awful. I am hoping to get through without incident but I see on here how many ladies are having to have hospital admissions with it, it is so hard. Are you more than halfway through your chemo regime now? You can do it girl, we've got your back
Tbird, I could have written your post, and you are certainly NOT vain! I am very low maintenance generally but the baldness I find incredibly upsetting. I have not yet looked at my bald head, and the OH has only had glimpses. However, I'm asking him to check the back of my head daily for regrowth, he says he can see some dark hairs appearing (I had brown hair) which gives me comfort. He keeps saying "give it time, it will come" yes, but I'm not confident in the wig and I just want to get excited about a short haircut! I've never had short hair ever and am focussing on this to get me through.
I was a shave rebel and didn't, I just brushed my hair out, then trimmed the long stragglers to fit under the wig. I have a very fine Manchu style pony tail on top of my head and one defiant fringe hair smack in the middle of my forehead. I wonder if the hairs that remain have now stopped their growth cycle and gone into the resting phase due to chemo and will naturally fall out in a few months? I hope so otherwise I will have a very multi layer mullet when the rest of my hair grows! I have noticed arm hair coming back but absolutely nothing in armpits, not too bothered about anywhere else!
Shampoo: I'm actually using shampoo and conditioner, I'm using Dove at present, just rubbing it over the baldness. After seeing shampoo bars mentioned on another thread (Lush new bar I believe) I had a look on the handmade site Etsy and found a lady in Wales who makes gorgeous soaps and shampoo bars, so bought some. Hubby has very awkward long curly hair and has tried the shampoo bar (I got the one with nettle in for regrowth and stimulating the scalp) and loves it, and he did not need to use conditioner as the bar is not drying. The company is called folk soap and they have a website (I will now attempt a link) They also have an offer at present of 3 bars for £10, the soaps are also good Folk soap website I will try the shampoo bar after I have finished chemo as it is a growth stimulant and although only nettles, we all know how powerful herbal remedies can be as T is derived from the Yew tree!!
I have discussed the above with hubby and we are now using up our liquid soaps and shampoos etc and will switch to the solid handmade stuff as it has no chemicals or packaging etc. One of many small changes we are making following my diagnosis.
Hope everyone is keeping well, and those of you experiencing troublesome SE's may you recover quickly xx
i must say not liking this new style site. I posted a post yesterday all about hair - didn't notice I had to say I'm not a robot and then for goodness sake my post disappeared, and I didn't have the energy to post it again.
The post was has anyone started to have hair regrowth, if you have what shampoo are you using.
Also I still have some old stubble left from where my hair was shaved. What will happen to tHis old hair, will it still fall out and can it damage my new hair growth.
sorry if I sound vain about my hair but I'm so sick of concentrating on all the negatives from my treatments, I thought I'd change tack.
hope everyone is coping with treatments especially the dreaded T.
Love Tbird xx
ladies , how are you all holding up , T continues to be my nemisis been in hospital since Sunday
Monday chemo will now be postponed , just want to get to the end of what feels like a very long 8 cycles
well done all of you approaching your last cycle you must feel bloody amazing
Hi ladies, hope you are all as well as can be.
Pigeon, thanks for the nail info, stil undecided, but like you am liberally applying the cuticle oil and am also using hand cream morning and night, because I have also noticed the cuticles parting company with the nails, eek! T really dries you out, doesn't it?!
Liloc, time will fly for you too, and soon it will be Spring and all your chemo will be behind you. The reflexology sounds good, might have to investigate that. I think you will be best guided by your oncologist with regards to the mastectomy, my first thought when I was diagnosed was to ask for a double mastectomy, but I have read about a lumpectomy and treatment being just as effective. The concoction from Italy sounds interesting, it was thoughtful of your friend too. I also saw A Star is Born, and thought the same, very long and more of a documentary I felt. Still, I liked it even if I lost track a few times, I can see why it is up for so many awards.
My nails are now painful again, I've had a week with no pain now trouble using fingers, gah, b****y chemo!!!!! Also developed a dry cough on T, as well as a nose full of dried blood each morning and some broken capilleries on my face, who said they looked like Darth Vader without the helmet, me too!
I have mixed emotions about more T chemo this week, it took a fortnight to feel well again and I've been playing catch up this past few days. I'm fed up, but will soldier on no doubt.
Keep going November ladies, we can do this!
Hi all, glad to hear you’re all getting through your T cycles, with ups and downs. Seem to be ticking them off fast. Jealous of people who can see the end of the tunnel for chemo, I don’t start my first of 4 til Thurs and don’t finish til April which still seems months off. Still not feeling great, every day I wake up with some new ailment, today it’s a cough out of nowhere and feeling sick after a trying a concoction a friend brought me from Italy. It is a honey and aloe vera mix made by a closed order of nuns in a convent in the foothills of Trento that is meant to boost your immune system. Tasted ok but both times I’ve tried it, I’ve spent the day feeling sick so not going to try it again. Feel guilty as she had to fly with cabin baggage especially as it’s liquid but don’t feel it’s doing me any good...
Was nice to see her though, so at least I’ve managed to be a bit sociable this week. Even made it out to watch a film at the local village cinema club, A Star is Born, very good but very long so my concentration was waning by midway. Stuck it out til the end though so counting it as an achievement.
Got negative results for my gene tests which I’m pleased about for my sister and nieces. For myself it wasn’t so much of an issue, I think I would have gone ahead with full mastectomy options if that eliminated any risks of recurrence. I never want to do chemo again. I need to talk to the oncologist or the surgeon about the risks involved with triple negative, grade 2 BC.
Other nice thing I did this week was a reflexology session (Macmillan offers patients 4 free complementary therapy sessions at my hospital). It was lovely, very relaxing, nearly fell asleep in the chair. Only ruined by having to wait around nearly 2 hours for an ultrasound afterwards which wasn’t as relaxing.
Hope you’re all having a nice weekend and not suffering too badly. xx
Thanks Holeinone! I can’t believe I’m so close to the end now, it felt like such a long way off when I started in November.
Not much on the side effects as yet, I did have some slight nausea on the way home after treatment, and my tastebuds basicallly immediately switched off - my dinner last night tasted of nothing!! I start the injections tonight, hopefully the bone pain won’t be too bad between that and the Docetaxel. 😬 My onc included some co-codamol in my goody bag, so that should hopefully help if it gets bad.
Ive kept my nails painted in dark colours since I started the T, no idea how much it’s helping... I did notice when I stripped the polish off last week to reapply, that the white “half moons” under the ends of my nails had all but disappeared...?? 🤷♀️ What I’ve found most important, for me at least, is keeping my cuticles well oiled and moisturised. If I get lazy with it and start skipping, I can really tell a difference, as they start peeling and pulling away from the nail a bit.
Tracybev - congratulations on your new granddaughter!
We’ve only had a very slight dusting of snow here in Staffordshire, which melted within an hour or so. We did have a day where it didn’t snow but the trees had the most beautiful white frost crystals on them, it was really lovely.
Re: radiotherapy - my specialists said that it starts typically 3-4 weeks after your last chemo - but I’m sure that will depend on your hospital, and how well you’re doing after the chemo, etc.
All the best ladies for getting through these final treatments! We can do this! 💪💪💜🐦
Pigeon, woohoo, just one more chemo! I'm a tad jealous, hope the full dose is kind to you x
Tracybev are you also nearly done with chemo? If so, hope the s/e's are minimal for you on the homeward straight. A new granddaughter? Wow. someone to keep you busy and your mind occupied, a great distraction! x
We have minimal snow here in Worcestershire, but it's bloomin' freezing! Had a very long walk yesterday and then a glass of wine with tea last night, I'm not a great drinker, maybe a couple of units a week at most, but I have to say I enjoyed that glass of wine! Think it helped me sleep as I was zonked after the walk, really achey.
I've been trying to figure out if I should paint my nails but there seems to be mixed reviews as to whether it works. Nurses said it does but I hate having varnish on my fingers, might see if I can find a cheap bottle of water based varnish. My finger ends and nails were painful at first on the T, and are now tender again after just over 2 weeks so I'm hoping massage may help
Hope everyone is good, have a great weekend ladies
Hi ladies, hope everyone is doing ok ❤
Well I'm one week post #2nd T and s/e have been minimal, no nausea and very little bone pain so here's hoping that 3rd and final one on Valentine's day goes the same way ! Hope it's as kind for you all 👍
Haven't heard anything about when radiotherapy starts yet but seeing onc on 11th so maybe will find out then.
How's everyone coping with the snow ? I live in West Sussex and have had hardly any... It's currently raining !!
Also awaiting the birth of my granddaughter who is due to arrive chemo week !!
Stay strong 💪 ladies this part of the journey is nearly over xx
Well, my second Docetaxel was okay to go ahead at 100% dose today - my liver function was down again from 99 three weeks ago, to 72 (I think?) today. (40 and below is normal, but they make a judgement call on the day on whether to proceed with treatment) So that’s good news that it’s been improving, anyway.
Now I just have to wait and see how I get on with the side effects on the full dose!
So that’s it - one more round of chemo to go now!
Good to see a few posts, so nice to see you are all OK.
Sals, great to hear the steroids are helping you be superwoman! I'm hoping the 2nd T is much kinder.
Clarabella, think I would mention those tingly palms to your onc, I'm sure it's one of the things we are supposed to notify? I had it very briefly, but since then my hands and feet have been very warm, unlike me as I'm usually freezing cold! Also had the gyppy tummy, never came to anything but T can give you the runs, although like you I also suspect the paracetamol.
Tbird, I'm sure the oncologist has some leeway built in to the treatment plan depending on how we react, there must be flexibility with dosage as I've read other ladies having treatment cut to 80%, seems pretty common. Good luck with the liver scan.
Pigeon, sorry to hear you are fed up, feel free to rant, it helps! I think just after the halfway point is so difficult, we are so near yet so far from the finish. Good luck with your second T, hope it is kind to you x
Juzcooper1971, great news on your liver scan. Your chemo regime sounds very tiring, hope it all goes well for you.
Well, my onc refused to reduce the T even though I was in a lot of pain, he even refused painkillers, thanks for that! I have to take paracetamol if I get the hideous bone pain again.
My hair is starting to come through, but I apppear to have the worst case of cradle cap in a middle aged woman! Not sure if I should exfoliate my bald head or if that will damage the hairgrowth.
Treated myself to a hair stimulating shampoo bar from a seller on Etsy, she's posted it today so I can't wait to try it out. I also treated myself to a small piece of silver jewellery, one of those ear cuffs, so I can show it off with my new pixie haircut (when it grows )
We have had snow here with more expected (I'm in Worcestershire) and everywhere looks very pretty, hubby and I are off out for the day tomorrow with plenty of walking planned as I'm in week three and finally feeling human (apart from the constantly grumbly tummy and the horrible taste in my mouth), plus I've put on 4lb, which I think is water retention, lack of moving about and blocked bowels
Stay well ladies! xx
Hi All, I haven’t posted in a while 2nd and3rd week after T last time I was back at work and been busy kicking of the year! Had my 2nd T and herceptin on Tuesday have been feeling fine although crazy high from the steroids - I slept 2hrs Monday, 3 Tuesday and 3 last night no catch up in the day but got shed loads done! But now the big T bus has hit me, so that’s probably me and the sofa for the next couple of days! Anyway it’s the penultimate chemo for me too, although there are 15 more herceptin every 3 weeks and oestrogen blockers not sure which one yet - anyone know anything about the different types? Like everyone i’m sure chemo has been hard but I have been quite lucky I cold capped and so far with one to go have my hair and I have not had any side effect that have had me back in hospital only the blood clot for a few hours, but whilst can’t wait to finish the last cycle it’s a bit scary to think about going through scans again etc, Will this journey ever be over I suspect not for a good few years. Good luck and keep going you strong November ladies 😘
Hi Juzcooper1971, so happy to hear your liver scan came back fine, fingers crossed mine will too.
I had the two targeted drugs yesterday and I'm feeling good, and looking forward tO a 3 week break from Doctaxel, hopefully by then my liver levels will be back to normal and my body stronger so I can have full dose of Doctaxel and the two targeted drugs to finish my chemo.
Pigeon, I would be very interested to know how you get on with your second Doctaxel, hope it all goes well.
i hope everyone else is doing ok, we are all nearly at the end of this part of the journey, it's been Tough but we've done it.
keep well lovely ladies love Tbird xxx
Hi Tbird. I had to have a liver scan too as my levels were high and it came back absolutely fine. As I'm on the trial and had Carboplatin every 3 weeks aswell as Paclitaxol every week for 12 weeks, it seems it was that particular drug that was affecting my levels. I've finished on those drugs now and had my 1st EC of 3 today. Had a bit of a meltdown on the trial nurse this morning 🙈 I think it was the build up to the EC as I've been quite anxious about it and possible side effects. Apart from a fuzzy head and being tired I'm not feeling too bad. Fingers crossed I'll be okay but not holding out much hope after reading all your comments when you started out on EC 🙁 It effects everyone differently so we'll see. Really looking forward to having a 3 week break tho instead of weekly trips (twice a week) to the hospital a for the last 12 weeks!! Sounds like this 'T' you're on is the devil for most if you's. Take care everyone and just think, were nearly there. We've got this 😘💪 xx
How is everyone getting on? I’m guessing some of you have had the second Docetaxel by now? I have mine tomorrow, provided my bloods are okay.
It will be the penultimate chemo treatment for me, and it’s strange to say, but while I can’t wait to finish chemo, I’m kind of nervous about finishing this phase of treatment and moving on to the next.
I had my first appointment with the radiotherapy consultant yesterday, it looks like I’m going to have 15 sessions of radiotherapy, starting 3-4 weeks after my final chemo. My oncologist also discussed hormone therapy - I’ll also be starting this after chemo - with ovarian ablation (via monthly injections), lanastrazole, and biphosphonates.
I’m struggling right now with the fear of the unknown, as I’m not only dreading tomorrow’s Docetaxel, which will likely be a full dose after the reduced dose of last time, so who knows how I’ll get on, I’m also dreading to see what the side effects will be with the hormone treatments and the radiotherapy. 😰
Sorry for the mini-rant, I’m just feeling down in the dumps and fed up of all this cancer/hospital stuff.
Thankyou for your reply, it's reassuring to know other people have had their chemo drugs reduced also.
I had one drug stopped and 80% given in no2 and no3 of Fec. Today the oncologist said I only had 80% of T on my first T (nobody told me this until today) and now as I said in my last post totally having Droctaxel stopped and having 80% of the two targeted treatments.
I am trying not to worry I keep telling myself these drugs are so expensive that if the oncologist didn't think the reduced drugs would work just as well as the normal dose then they wouldn't give you them would they.
tomorrow will be my penultimate chemo, my last one should be 22nd Febuary so please keep your fingers crossed for me.
Keep strong Love Tbird xx
Had a meeting with the oncologist this morning ahead of my 5th treatment tomorrow, not sure how to take the news. He said my liver levels were very high so they want to do a liver scan to see if any damage has been done. They are also stopping Doctaxel in my chemo tomorrow because of my liver and just giving me the two targeted treatments Perjeta and Herceptin. For my final chemo in February they will reintroduce Doctaxel if my liver has improved.
I am trying to be positive and think at least I can get a break form Doctaxel because I still feel so weak and tired, but then I have a little nagging voice saying will the treatment still be a effective if you can't have the full dose.
I havent had had surgery yet but will be having it after the chemo.
Have ve any of you ladies out there have there chemo cut short or cut down.
love Tbird xxx
I had my first T just over a week ago after 3 EC. I found EC very managable after the "hangover" feeling passed after about a week. With T I've not had that hangover feeling and I've also not had any nausea. I've basically felt like "me" since the T and less like an ill zombie.
For me the aches and pains have been managable with paracetamol. I started taking it the day of the T and then regualary for 4 days after. I stopped taking it because I got an upset stomach which I know I get from taking too many paracetamol. To be fair I might have managed without taking it for so long but didn't want to risk it.
For me the worse thing has been oral thrush. Am currently waiting for my GP to sort out a prescription for antibiotics. I've also currently got a numb top lip which I'm hoping is linked to the thrush.
I've also had new side effects such as tingling in my palms which come and go. Oh and hot flushes, they've been a fun new development. Had some stomach cramps and a day of going to the toilet a lot but I don't know if that was the T or the paracetamol.
I'm defineitely more tired this time round, but that might be the cumulative effect of it all as well.
Feeling a little better today, ten days in (at last!) managed to stay off any pain relief for over 24 hours now, so feel like I'm winning.
Liloc, really sorry to have worried you with all the T talk. I can only echo what Tbird says and some lucky ladies are gliding through it, and the fact that so far we are all suffering means the odds for you not to do so are higher I believe I have been feeling really awful since my third and last FEC, never really got over it. I'm quite annoyed with myself as I am fairly fit, non drinking non smoking low BMI and no other health issues, so honestly thought this would be a walk in the park, what a shock it was to discover my body really hates chemo! I'm now also bored of saying I feel s**t!
Jencat, thank you for popping on here to share your experiences, really appreciate it, I've seen your informative posts on other threads, and echo the thanks from Dikat.
Tigerlilli, ahh yes, the complete lack of appetite and no sleep for a week, sounds familiar. I hope the bleeding is nothing sinister, but if it helps at all I've had a bleeding mouth (lightly when brushing) and a fully blocked nose each morning on T which turns out to be blood. I think T might weaken blood vessels and hope this is what has happened to you?
Kateday, really sorry to hear about the mega periods, I had a hysterectomy years ago so none of that here, but, have you thought about cloth sanitary protection? Before I had my hysterectomy I researched them and it appears that, just like disposable nappies normal sanitary products can give you nappy rash, ladies who use cloth pads on lighter days don't have the same issues.
Lou43, I have heard about the amazing goody bags on those courses, please let us know how you get on. There are courses near me but it's really not my thing, I almost never wear makeup or do anything to my hair. I have surprised myself by discovering a 30 year old eyebrow kit in my makeup box and managing to thicken my eyebrows out with the special powder and brush. They look really natural. My lashes have all gone and my eyebrows are half gone now, so I'm nearly a naked mole rat!
Oncology appt tomorrow, not looking forward to it, however, I can see the light at the end of my chemo tunnel and I have my last lot at the very end of February, at present it's the only thing keeping me going.
We can do this ladies xx
so sorry if we have made you dread T, not everyone gets the side effects as bad as others. I have been reading other threads on here and some people have hardly any side effects especially people that seemed to have suffered on EC, so hopefully Liloc you will one of these.
We all need to rant and moan I feel as if it's all I do at the moment, nobody understands what we are going through except others on here.
Stay strong love Tbird xxx