Thanks, that's helpful to hear how you're getting on. I've just turned 44 so think that could be the route for me too with the ovarian suppression so we can swap notes on how we go on with it.
That's not helpful the room wasn't warm enough, I'd be the same. I remember I was cold after drinking all the fluids for my bone scan and felt the same. It's a long time to lie still for. Hope it's warmer for you next time.
I'm pleased I trimmed my hair. It does look more even but is also patchy in colour (it used to be dark brown with more and more grey so I was fully expecting it to come back grey). I'll decide what to do when it thickens and have a think about using one of the natural hair dyes I've found if I don't like it still. I keep wanting to throw my wig off in this sunshine but I guess our thin hair probably isn't the best idea and will need to apply suncream.
Hope everyone else is doing ok? Unfortunately one of my close friends told me she found a lump and went to her GP yesterday and is waiting for a scan. I really hope all is ok for her (I tried my best to reassure her but she's seen what I've gone through) but it brings back memories of when I was first diagnosed which now seems like a long, long time ago.
My first radiotherapy treatment went well. I think the worst part was laying perfectly still for 20 minutes - the room was a bit chilly, so my muscles were wanting to shiver and twitch! I had a “checking” appointment last Thursday, in the actual radiotherapy machine, where they did scans to check that the measurements they came up with in the planning appointment were correct. That one made me emotional for some reason - I felt really vulnerable laying there with the bits of machine moving around me.
Lou43 - I’ve been in two minds about trimming my hair. It is so scraggly and uneven at the moment, I think it would help it look a bit better, and maybe thicker if it was evened out... not that I’m going out without it covered anyway, haha! But at the same time, it’s hard to bring myself to trim it when I’ve been willing it to grow!
The colour of my hair is strange - when it was shedding a bit at the end of T, a lot of the hairs that fell out were actually striped. My hair is naturally brown, so there was a brown section at the end of the hair, a grey section in the middle, and then a brown section at the root.
Re: hormone treatments - I’m having ovarian suppression as well. (I’m 40.) I’m having monthly zoladex injections, and daily anastrazole tablets. I’m nervous too about the side effects. I haven’t been on them very long, so don’t know if they have kicked in yet...
Holeinone, the bad taste in my mouth was one of the most frustrating side effects for me! Also, I couldn’t taste salt or tangy flavours at all. This started improving for me during week 4 post chemo, hopefully yours will improve soon too. Since I got my taste buds back, all I’ve been craving is orange juice 🤷♀️
Good to hear how you're all doing with next stages, surgery and radio.
Apologies not posted for a while. Needed a bit of a break too after finishing chemo was a bit run down with the last few sessions of the 9 weekly chemo but perked up more now and start radiotherapy next Friday 5th April. Enjoying a bit of a break from treatment and we've booked a holiday in May which I hadn't wanted to do until now. Starting to feel better about looking ahead and making plans.
I was advised to trim the fluffy top growth on my hair, it's all whitey/grey but have read it can take a while for the pigment to readjust after chemo so who knows - I'm just glad it's growing if only slowly. I did clip it lightly yesterday so will keep you posted on whether that helps speed it on a bit
Have my appointment this Friday with my oncologist to discuss hormone treatment and switching off my ovaries so a bit nervous now to hear about all the side effects to come with this.
Have been back working a bit (don't know if I mentioned I'm a gardener) which I've enjoyed but have to be careful I don't do too much as get achy later. I agree with the achiness in the mornings and as soon as I sit down later my legs feel heavy when I get up.
Pigeon - hope you've gone on ok with first radio.
Clarabella - I had thought it wasn't advised to swim too so that's interesting they said you could
Holeineone - I didn't enjoy my planning appointment and had a weep when I got home. I hadn't expected to have the mould fitted on my chin and found being in a machine unsettling after the scans I've been for already. I'm sure I'll get used to it when I go every day, a bit like the weekly chemo.
Hope you can enjoy the sunshine this week. It certainly lifts my spirits. xxxx
Hope we are all doing well and enjoying this glorious sunny weather.
Pigeon, thanks for that, I was very heartened by her pictures as my hair seemed to stall after starting to grow pale fluff during T. Now I have dark stubble all over, and a very itchy scalp, something I didn't have when my hair fell out! A lady on another thread said she was bald when she started rads and at the end she had a nice little pixie do going on! Hope you are feeling OK and your first rads session went well.
A hair related fact for everyone I found out on here and might stick it on Liloc's hair thread as well (apologies if anyone already knows, I didn't): of the taxols, Docetaxol is the worst for affecting hair regrowth, it's really harsh on the follicles, some ladies have been left with alopecia. It stalls regrowth, as does Herceptin, double whammy for me then, and I had such fast growing hair before all this.
I've noticed that my fingerprints are now none existant, it's really odd, almost smooth fingertips! My nails are OK, the white part has crept down my nail bed by a good mm on each nail apart from my left index finger, that one is halfway down so I'm keeping an eye on it, might need to use plasters to hold it on and stop me catching it. I wonder if it is worst affected as I had chemo in my left arm?
Still have a bad taste in my mouth, no ulcers or anything, just horrid taste, hoping that will go soon, I like to enjoy my food.
My leg muscles are terribly painful now when I want to do stairs and uphill slopes, it's torture! Also cannot kneel, not sure why but it might be Herceptin? Also found a thread on the forum where someone said she had trouble with muscle pain until Herceptin no 5, then it got better. Fingers crossed, my next one is no 5 and am waiting for Herceptin at home to contact me. I've just had heart echo no 2 and will have them every three months due to Herceptin, also bloods have to be done every three months too.
Start my rads on Thursday, eek!!!! Aloe Vera at the ready (I did notice Aldi were selling Aveeno though, should have bought some!)
Stay well ladies xxx
Havent posted in awhile, I needed a little break.
Tbird, hope you’re recovering well from your surgery 💜
Holeinone, that’s a good idea - I’ve posted the hair blog link on Liloc’s hair thread as well.
How is everyone doing post chemo? My muscles are still really stiff in the morning or if I’ve been sitting in one position for too long... but I’ve been trying to keep fairly active - stretching, going for walks, pottering in the garden, etc. in the hopes of improving.
I have my first radiotherapy session this afternoon, and I have to say, I’m quite nervous! 😟 I guess it’s that fear of the unknown again, even though everyone says that rads are easier than surgery and chemo.
Thanks for the info, really appreciate it. Really pleased you’ve been able to make a decision based on your consultation today and wish you all the best for your upcoming surgery x
Liloc, I have seen long term survival figures which show literally a 0.01 percent difference in survival rates for MX versus WLE and I think coupled with the stronger drugs and more targetted treatment, plus the mental difference between the two operations, if that is the way your surgeon wants to go then run with it. I have had my WLE and my scar is curved around the areola, actually had two ops, a second to get clear margins, and he went in on the same site. Healed very quickly too and the scar is now fading after just a few months. Warning, they stick you back together with glue so it is super neat but you will be all crusty around the nipple for a while after removing the dressing.
I have noticed the feet are no longer really sore today and fingers and toes less tingly so that will pass too. Sucking orange squash flavour ice cubes to get rid of the horrid taste in my mouth though, oh well!
Clarabella, I am also having 15 plus 5 targetted, I've seen on other threads that the targetted rads are not given to everyone, and some have asked for them. I do know they are different, I think the machine comes in close and actually touches you? I've been warned of developing a cough afterwards if they clip your lung
Sending best wishes to Tbird for a speedy recovery xx
Hi there, saw the surgeon today, Got a lumpectomy scheduled for April 11th so in about 3 weeks, I asked her about the merits of doing a masectomy instead (which I would have been prepared to do) but she said a lumpectomy followed by radiotherapy offers the same survival rates as a masectomy so the only time it would be advantageous is if there were some reason for not doing radiotherapy. She took a lot of time planning where she would go in for the least scarring (on the edge of the areola) so seems intent on doing a nice job! Holeinone, I think your cousin’s viewpoint is very sensible! The doctors are the ones thinking logically, without all the emotional baggage we’ve got at the moment (I was blubbing for most of the second half of my appointment).
DiKat, hope your chemo went ok today. Just one more to go! You can do it! To answer a few of your questions, yes you’ll probably be doing surgery mid/end of May - they give you 4 weeks after last chemo so your immune system is back up to speed so no chance of infection from surgery. I had mixed results on the size of my lump, shrank quite a bit in Jan when I was on EC (4 cycles) and they were really pleased but when I did an ultrasound after two cycles of Paclitaxel, there was no change. So the onc decided there was no point carrying on, gave me one more cycle of EC and on to surgery. So mixed results, disappointing in a way but at least it cut my chemo sessions down.
Holeinone, yes I have very sensitive or numb soles of my feet too, but I also have tingly fingers and toes so I think it’s a side effect of peripheral neuropathy. Hoping it wears off as the chemo wears off. 😕
Tbird, thinking of you 🥰.
Hope all goes well with the op TBird.
I had my meeting with the radiotherapy Dr today. It appears that they split the consultation where they discuss what they recomend for you and the discussion around the side effects etc from the CT scan etc. So I'll be having 20 rounds of radiotherapy - 15 to the whole breast and 5 targeted at where the tumour was (if they can see where it was on the scans (if not it'll just be the 15).
So I'm now waiting for an appointment for the CT scan etc. so it's unlikely that I'll start radiotherapy until April some point. I would like to get on with it really, although it does give me the opportunity to have my port removed before it starts.
Interestingly, the Dr said I could swim whilst having radiotherapy. Some of the BCNs I'd spoken to had said this was a no-no during radio due to the irritation to the skin. Today the Dr said that provided my skin isn't irritated it's fine. Obvioulsy, if the skin is irritated the chlorine in the pools isn't going to help it, so in that case it'd be sensible to stop swimming.
Anyway, I hope everyone is doing OK where ever you are on this journey.
Tbird, best wishes for your op tomorrow, hope you have those big pants with you so we can all be with you virtually, sending virtual ((hugs)) and
Liloc, I had a lumpectomy, no choice given, even though I'm small chested and the lump was bigger than they thought, there is no difference in size now everything is settled down. Surgeon did a great job, and was mighty proud of his work when I saw him post surgery! If I had my way I would've got rid of the pair of them as a preventative measure. I did say take them both off but he was having none of it. I do have several family members (there's quite a few of us and it's not genetic as far as we know) who have had BC and one aunt was a 35 year survivor after a lumpectomy in the 80's with no recurrence, she died recently of old age well into her 80's. Another aunt had a mastectomy in the 70's and has had several recurrences but all spaced out, she is also now well into her 80's and in good health. I told a cousin about my wanting a double mastectomy and she wisely said I should be guided by the team treating me, they are the ones who see this disease every day, know how to deal with it and know what is best for your body. They don't want us coming back for more surgery and treatment so will do what is necessary to treat us with as little body trauma as possible.
I do wonder what has happened to some of our group. I hope that they are flying through treatment with no issues and just getting on with things.
Pigeon, thank you so much for the blog link, the photos of that ladies hair or lack of has given me hope! Since OH shaved my head over the weekend I've got nothing but fine stubble, so will try not to examine my head every day now. It is annoying as my hair grows quickly, but chemo seems to have given it a belting!
Maybe you could add the link to Liloc's hair regrowth thread on the chemo board? It makes for an interesting resource for us and others to refer back to.
Anyone else got really sore feet? Don't know where that came from, like I've been fire walking! Combined with the thigh muscle ache it makes for an interesting gait at times!
Hope everyone is well xx
Hope you don’t mind me jumping in on your conversation. I’m from Dec thread and having chemo 5 tomorrow. No. 6 should be 10th April so I’m expecting my surgery to be mid/end April as was told it’s normally 4-6 wks after final chemo. When I was diagnosed a lumpectomy was mentioned but I’m think I’m leaning towards mastectomy now too. Have you had the opportunity to discuss it your surgery since diagnosis or will that happen at your appointment tomorrow? I’m finding it all a bit of a minefield at the moment as have just been trying to get through this awful chemo. Has your lump shrunk significantly? I’m due to have an MRI in a weeks time 6 days after 5th chemo so hope to get more info when I see Onc prior to final chemo. Will be interesting to read what your supportive ladies on your thread have to say to you. Best wishes x
Hi Tbird, just wanted to wish you all the best with your surgery tomorrow. Please let us know how it goes and how are are.
I am seeing the surgeon tomorrow so hopefully will get a date for surgery in April. At the moment the plan is a lumpectomy followed by rads but I do want to discuss with the surgeon about how much a mastectomy would affect recurrence, I think I would prefer a more major operation if I knew I were less likely to go through this again.
I think apart from Tbird, most of you have already had surgery. There were some on the thread at the beginning like Juzcooper, Lilypad and Lisajayne who were doing chemo first like me, if you’re still reading, get in touch and let us know how you are.
Has everyone had a mastectomy? With reconstruction? Would like to hear your experiences, if you don’t mind going back over it.
Good luck Tbird! 🍀
Traceybev, glad to hear that your hair stopped falling out! Hopefully mine will do the same soon, as I’m in week 4 now.
Liloc, I had horrible indigestion too, especially on FEC, and it was worse when eating. My onc prescribed omeprazole, which helped a lot.
I can also relate to the exercise thing, I haven’t been exercising nearly enough as I should, and feel like I’m 90 years old when I first get up in the morning, my muscles are so stiff. Holeinone, I’m similar with climbing the stairs and getting winded! It’s nice and sunny here this morning, I think I’ll nip out for a walk in a bit.💪
I’ve been looking at hair regrowth blogs - this lady posted her hair growth every week post chemo:
My hair started growing back in January after my last FEC - and interestingly, my hair looks similar to hers at week 11.
Holeinone, yes - I’ve had runny eyes and nose as well... it seems to have improved a bit over the past few days.
We haven’t heard from Kateday in awhile - hope you’re okay. ❤️
Liloc, saw your new thread about hair, hope it gets lots of responses as we could do with a more comprehensive guide to hair growth on here somewhere. I have found out from another thread that when lashes come back they have to be trained, so am off to buy myself a cheap clear mascara at some point in the near future.
Pleased to hear you are post chemo now, that's great! I had incredible tummy and digestive system upset after FEC, and previously had no digestive issues at all, I'm not prone to tummy bugs or vomiting at all, so it was all new to me. I mistook the upset system for hunger and have put on half a stone!
I can relate to the lack of exercise, it's so hard! I now get out of puff going up the stairs and my legs ache like I've done a marathon, it's ridiculous.
Hubby shaved my head last night as I was unable to tell where the growth was happening, I look bald, but there are wisps coming through. When I finish my rads in 5 weeks I hope to have some real hair but I'm getting worried as the hair I have grown is fine blonde fluff, and OH says it's only in patches. Maybe I'm impatient as only 17 days post chemo. Nothing showing in the underarm area, but that can stay bald for all I care! I have thought about trying some black castor oil as a small bottle is only a couple of quid and it's very popular in the Caribbean for hair growth.
Anyone else getting ridiculous watery eyes? I feel like I'm looking through puddles most of the time, and have tears rolling down my cheeks too, I'm constantly mopping my face with a soggy tissue!
Right, off to do Sunday lunch now, have a good weekend ladies xx
Hi girls, I posted a question on the general chemotherapy forum to ask about hair regrowth and it seems to be 2-3 months at least for the pixie look 🧚♀️. So I think we just all have to be patient, give it time and not panic! Probably we should still plan on having an Easter bonnet at hand 👒 😁. Pigeon, I’m pretty much like you, bristly half cm hair but mostly skull. 👩🏽🦲
On Day 10 of my last EC (thrown in for good measure as T wasn’t having an effect on lump size). Been really rough again, all the old side effects plus got a throat infection midweek and had to get antibiotics. Luckily no temperature with it so managed to avoid A&E 🤞. However got a few more days of antibiotics and two more Filgrastim injections to go so my immune system doesn’t feel out of the woods yet. Still got horrible indigestion thing which makes me feel sick every time I eat or drink something but no idea if that’s chemo related or just my body getting revenge for all the abuse...
Managed a walk around the block this morning at 8.30 as it was finally sunny ☀️ (sun’s already gone). Only 16 mins slow stroll but considering I had’t moved further than the sofa to the bedroom/kitchen for over a week, quite proud of myself. Even though I’m completely out of puff. Know they say you should get some exercise every day but have found it very hard, especially when the weather’s been so bad.
Hope you’re all resting up, have a relaxing Sunday. 🥰
Hi pigeon and holeinone
i did cold cap but I lost so much hair I didn’t bother to do it on my last session as my hair was short and was starting to grow back, 3 weeks after finishing T I noticed it had started falling out again 😳 I’m now 4 weeks post chemo and thankfully it has stopped and is bristly again ! x
My hair started growing back at the end of FEC too, but it’s still only 0.5-1 cm long and pretty thin and sparse - I can still see my scalp, especially on top. The sides are a tiny bit thicker. My side burns are the longest/thickest. 🤷♀️ I think if my hair wasn’t so thin - if it was as thick as when I first shaved it to a #1, I wouldn’t even mind the length so much.
Towards the end of my second round of Docetaxel I noticed it had started falling out again - just a little, not as much as when I started chemo, but more than just “normal shedding”. It’s still coming out, and I’m now three weeks post-chemo. 😫
I’m desperate for it to grow back. I’m too self conscious to go out without my head covered... I even keep it covered at home unless I’m having a hot flush and need to cool down. I don’t mind my wig, but unless I’m going somewhere nice, I usually can’t be bothered faffing with it. I tend to wear wooly hats to the shops etc, but with spring coming that will start to look a bit silly, never mind being too hot!
I’m starting hormone treatments soon, which lists hair thinning has a possible side effect, so I’m wondering if my hair will ever be “normal” again. ☹️
A meeting about a meeting, how bizarre! I have had my planning meeting, am tattooed and ready to go on 28th March. I found the planning meeting and measuring up quite surreal, and one of those "this is real" moments, hence I had a weep in the car park when I came out. They were very nice but I did feel quite vulnerable while the machine was working. Also, it's a CT scan and I have had no scans so far, just worried they might find something else in there.
I do wish I had cold capped. I'm a bit of a hippy, my hair grows and I cut it myself so no fancy hairstyles or colouring, just simple straight hair. How I miss it now. I have since read some disturbing reports of (unreported) permanent hair loss on FEC-T and if I had known this I would've persevered with the cold cap.
Good luck with your pre planning meeting!
I have an appointment next week to discuss rads, but I think it's a consultation meeting not the planning meeting. So a meeting about a meeting! I'd guess I'm not going to start rads until the end of this month, maybe beginning of April at this rate.
Have you started rads yet? How is it?
In terms of hair growth, I cold capped so managed to keep a lot of hair. So much so that only I know I've lost any. Interestingly the hair I did loose was above my ears, so it looks a bit like I've had a trendy buzz cut. Interestingly that has started filling in a bit, although I'm still shedding too (but that might be natural shedding I guess).
Hope everyone's keeping as well as they can. xx
Hi November ladies
Clarabella, really pleased your meeting with the surgeon was just about him checking his work, I got the impression from mine that they take great pride in their efforts to cause the minimum amount of change to a body. Having someone admire your boob is a bit odd though! Do you have a rads planning meeting or are you well on the way with your radiotherapy sessions now? Good luck with the last stage of active treatment.
Tracybev, how lovely to be distracted by a granddaughter, I'm sure there is no better therapy! I hope your rads are coming along fine with no delays.
November ladies, has anyone had any proper hair growth yet? I noticed what can only be described as fine blonde bum fluff coming through a couple of weeks after last FEC, but nothing more is happening. I feel quite vulnerable without hair, hate my wig and am browsing the forum looking at hair photos from other months, hoping mine will be back soon. I had fast growing hair, quite long, and am eager to try some hair stimulating shampoo, but not until I finish rads. Think I have half a cm of this fine down, and am waiting for my darker thicker hair to sprout.
Anyway, wanted to pop in and check all is well with you all, hopefully anyone still undergoing chemo will soon be finished, good luck to you all with rads or surgery, onwards and upwards lovely ladies!
Havn’t posted in awhile as my new granddaughter is proving to be a lovely distraction from this horrible journey.
Hope everyone is as well as can be, and congratulations to all those who have finished chemo... had my first rads yesterday and apart from an hours wait it was really straightforward then today was in and out in 15 minutes ( 5 mins waiting in the changing room to be collected !!) Hope rest of appts are just as quick, I’ve opted for afternoons as was told it’s not as busy
Take care xx
Congratulations to all those who have finished their chemo.
I have seen the surgeon who did my op (WLE & SNB) and Holeinone, you were right, he wanted to check his handy work. He's pleased with how its healed. Which is nice to know. He also confirmed that they re-tested my tumour for hormones etc as on the first test it was ER & HER2 negative and PR positive. The re-test has come back as triple negative. He is referring me for genetic testing as I now meet the NICE criteria (funny how familiar I've become with the NICE guidelines on these things), although he said it can take up to 4 months here.
Good luck to eveyone who has surgery coming up or more chemo to come. Xx
Pigeon, thank you, I was also in and out in well under an hour, all very efficient and quick. I think they said to me I would only be there for 15 mins max once the first appointment was out of the way. For some reason I got ridiculously emotional once outside and walked back to the car with tears streaming down my face, not sure why, I've had a day of crying now, obviously it's better out than in but I'm fed up of the emotional rollercoaster tbh
Tbird, really sorry to hear you've been in hospital again, glad that it is all over for you on the chemo front too. Best wishes for your upcoming surgery, and yes, docetaxel is a b*tch!
Lou43, so pleased to hear your scan was clear, all the best for your last chemo, onwards and upwards!
Liloc, yay! Another November gal done with chemo! Totally with you on the sentiment to the nurses, they were all amazing and so helpful, but I really don't want to ever see any of them in a professional capacity again!
I've had slightly different side effects with third T, although it feels like much more wind not so much bone pain and easily managed with ibuprofen and paracetamol, more tingly fingers and feet, actual wound pain, and across chest, plus a dry cough, which turned up after 2nd T. I feel very heavy hearted, can't explain but just some chest aches and tiredness too. Getting worried about lack of hair growth, I can see very fine whisps and some darker hair coming through, but not from each follicle, I'm not patient! Nails are not yet hurting but the white bit at the top appears to be getting deeper down my finger, there is a slight colour change to nail bed but no actual lines across my nails yet. I did have ridges on my nails but the bit growing through is now smooth, just to be different!
Think I will break from the forum for a few days as I've been reading things I shouldn't and getting upset. I think one of the most upsetting things is actually seeing how many ladies (and men) are on here dealing with this awful illness.
Right, my radiotherapy starts in a couple of weeks so I need to read up on that, will catch up with you all in a few days time.
Stay well ladies xx
Hi, seems like we are all making some progress now. Kateday, have you been able to have another round of chemo? Hope you are well. I had an ultrasound on the lump last week and it hadn’t changed in size which was disappointing (it had shrunk in Jan so that’s something). Saw my oncologist on Tuesday and she said as the Paclitaxel wasn’t being efficient there was no point in carrying on with it (I had two cycles to go). So instead she proposed one more cycle of EC 😱 for a final blast and then onwards to surgery. As it was only one cycle, I agreed as I thought I could cope psychologically knowing it was the last; if it had been more I couldn’t have faced it, knowing how awful I had been on EC for three
So had my last chemo on Thurs!! Can’t believe it. They don’t have a bell at my unit but it was very emotional for me saying bye to the nurses. They’re amazing, always so cheerful and welcoming. I took in a card and a tray of (shop-bought) fancy cupcakes for the dept, didn’t really know what to take, they must get so many fattening treats from grateful finishers. 🧁🍬🍫🍪 I tried not to get teary, the sentiment was more “I hope I never see you again” but I left that unsaid!
So back on all my EC anti-sickness drugs, struggling to remember which are before food, which are after, if I’ve taken them yet etc so glad I’ve got my nice pill box to keep track and overcome brain fog. Expecting about 10 days of utter grottiness, and been given 7 days worth of injections, just praying no temperature or anything I need to go to A&E for... will be counting down the days til my white blood cells are on the up again!
T- bird, sorry to hear you were in hospital but at least chemo is now done with. Rest up before your surgery.
Lou43, Holeinone and Clarabella, with your rads you will all be ahead of those of us who still have to do surgery, so keep us updated with what it’s like, even if you post on another thread too. Wishing you lots of luck with your last stage. Lou43, so glad your scan results were clear xx
TBird - will be thinking of you on 20th (my birthday). I had my mastectomy before chemo also. Hope all goes smoothly. I was given a zip up fleece hoodie from a friend which I found really comfy to get on and off. Ended up buying lots of shirts too to slip on and off easily, and wish I hadn't stressed about getting a post surgery bra so soon and worn comfy vests instead. Just go with what feels comfortable and get lots of rest (plus take the painkillers they give you when you need them) Hugs xxxx
Sorry I've not posted in a while either. Well done to those of you who have finished chemo and good luck with radiotherapy and surgery next.
I have found the last weekly Paclitaxel treatments more tiring (plus cold and cough not helped) and have had some neck and jaw pain which we think might be anxiety related now. I had to have another CT scan on Tuesday to check a very small nodule on my left lung they picked up back in October. I know they said not to worry, they weren't overly worried and it's common for women to have these but they wanted to recheck at 6 months to be sure it hadn't changed. So huge relief today to see my lovely oncologist who said all is fine and no need for more scans. I hated going for the scans, worst thing waiting for the results from these, though I now recognise the results back are reassuring.
So just one more chemo for me next Friday. I know what you mean about ringing the bell, I'll be very emotional. It was rung twice last week and was emotional just hearing someone else ringing it. The nurses also get emotional.
So on International Women's Day just think what we've come through so far and we have the strength to get through these next stages, we can do it ladies! xxxx
sorry I haven't posted for quite a while. I think like a few of you I struggled with the Docextral (noT sure if I've spelled it correctly).
I finished my last chemo on the 20th Febuary, then ended up in hospital 25th Febuary for nearly a week.
Thank goodness I feel so much better now and it's just dawning on me yippee no more chemo.
i will be having mascetomy 20th March, not looking forward to it at all, so nervous.
I think I might be more nervous of the Herceptin injections I will be having.
stay safe love Tbird xx
I was in and out in under an hour.
I had a 15-20 minute chat with one of the radiologists, where she explained the process, talked about side effects, etc. Then a short wait for the scanner to become free, then 20-25 minutes for them to position me in the machine, make sure I was lined up correctly and make temporary marks with a pen, run the CT scan, then do the tattoos.
One thing that surprised me, she said when I come in for the treatment, I’ll be in the machine for 25 minutes! From what I’ve read, I thought it would be much quicker.
Oh wow, you've already had your rads plan, can I ask how long it takes? Mine is first thing on Friday and we are assuming it will take anything up to 2 hours from what I've seen on the forum?
Good luck with your rads, might see you on the March rads group! I have just purchased a bargain tube of Aloe Gel max strength Dr Organic 200ml for £2.70 from Holland and Barratt for my skin , reduced from £5.99 to £2.70 at the mo xx
Hi Clarabella and Holeinone
Congratulations both on finishing chemo!
I’m not having any scans either, and also find that unsettling. I asked my onc about it, he basically said that the cancer was removed when I had surgery, the chemo etc is to help prevent recurrence. I guess I have to trust that, but it’d be nice to have proof that it’s gone and hasn’t spread etc.
That makes three of us starting radiotherapy soon. I had a mastectomy before I started chemo. I had my radiotherapy planning appointment this morning, and now have three tiny tattoos to mark where they will line me up in the machine. I’ll have 15 sessions, starting on the 25th.
I’m also having hormone therapy as I am (was?) ER+, I’ll have to have a monthly injection to suppress my ovaries, starting next week, and anastrazole for 5 years then tamoxifen for 5 years.
I'm pleased it went well for you. I managed to escape the chemo ward with dry eyes as they didn't realise it was my last one, but seeing as I have been a drama queen, fainting on them etc, I was glad to get out with my dignity just about intact! One of the senior nurses did realise and came over to say goodbye, and I managed to keep my composure as I was on tranquillisers
I have already seen the oncologist and will be measured up for rads on Friday, so like you had surgery first. Did you have a mastectomy? That might be what the surgeon wants to see about as they don't like people messing with their work. I also am having no further scans etc and like you find that worrying, not sure how that pans out. We just have to trust them as you say.
Hope your side effects are minimal with your last T. xx
So I'm finished with chemo. I was quite emotional yesterday, especially when all the nurses hugged my goodbye, didn't want to cry but I did. It's the end of a routine (I like a routine) and a bit like a safety net has been pulled out from under me and I'm back into the unknown for now. My last round of Docetaxel was reduced due to the peripheral neuropathy in my palms and lips and also the rash and painfully dry skin it caused on my face. Have been lucky (so far) that i've not had any aches and pains with it.
Radiotherapy for me next as i had surgery first. Am seeing the consultant who did my surgery again in a few days so wonder what he'll say. It does trouble me that I've had no scans other than those which picked up the tumour in the first place. But i have to trust that the Drs got it all in the surgery and the chemo has done its preventative job for any cells that might have been thinking about it.
Just popping in to wish Clarabella good luck for your final chemo!
Liloc, that horrid digestive thing, I've had it all the way through chemo. Never had any digestive issues in my life so completely misinterpreted the symptoms as intense hunger. I've had lots of reflux I think and very unsettled digestive tract, to the point of painful, all new to me and not pleasant at all. As you say, medication only offers temporary relief.
Stay strong ladies xx
Hi all. Harkes, so sorry you were so ill! Glad you recovered ok but makes you question this whole chemo thing. Know it destroys cancer cells which is why we’ve all done it but yes, there has to be a balance with our general health and well-being.
As a monthly group we have all seem to have found chemo so harsh (I haven’t read other monthly groups so I don’t know if others have generally been more positive). I keep thinking it’s so medieval, maybe with all the cancer research going on in 20 or 30 years time, the idea of injecting people with chemical poisons will be viewed like we see the practice of leeches now 😢.
Anyway congratulations to Traceybev,Pigeon and everyone else who has done their last one and good luck to Holeinone and Clarabella on their last cycle. I’m not sure who still has to do surgery and who has radiotherapy and who has both but please keep us updated on where you’re at and how things are going.
I still have two more cycles to go so til April. Am suffering from very tingly fingers and toes though and my oncologist had said in the event of peripheral neuropathy she would change me to a reduced dose but weekly. I don’t want any permanent effects of chemo so I’ll talk her her about it when I see her next week but that makes March seem very daunting with no recovery time between each session 😟.
I am also feeling sick still, but it doesn’t feel like chemo nausea, feels more of a digestive thing, with stomach ache and rising bile. Have any of you had any more indigestion type problems? Have some medication called Lansoprazole to reduce acid and take Gaviscon but seems to be only temporary relief.
Nicer news, I also went to a Look Good Feel Better session. Really fun, with a nice group of about six other ladies and lovely volunteers running the session, beauticians and make up artists, one even a BAFTA award winner. Lovely freebies from really expensive brands too, so I would really recommend it if you have one available nearby. Practising my eyebrows with varying results 🥴😂.
Goodness Harkes, how scary! Really glad you’re on the mend.
Thanks Holeinone, the side effects haven’t been great this round, and today (day 7) is usually my worst day for aches and pains (for some reason I get a very sore lower back?!). But it’ll soon pass, and it’s a great feeling knowing I’m not counting down to the next round to start all this pain again. Plus, last night I did my last Filgrastim injection which was a celebration in itself 😁
Good luck for your final chemo today, Holeinone, and to you, Clarabella, for Monday ❤️
Thank you, Clarabella.
Good luck with yours on Monday. To quote Winnie the Pooh, we are braver than we believe and stronger than we seem, we got this!
Good luck for tomorrow. My last one is on Monday. I'll be having a reduced dose due to peripheral neuropathy in my palms and a lovely red face.
Oh my goodness what an experience! So pleased you are still here to tell the tale and thank goodness your onc has agreed to ditch the last chemo and let you get on with rads. Hope you are home now and feeling better every day.
Hi everyone, haven't posted for a while due to the fact I have been too ill following my first 2 docetaxol. Have had pneumonia and to be honest at one stage it was 50/50 whether I would make it through. However, due to the excellent care I received in the A&E and on the ward at my local hospital, I am still here to tell the tale. I decided that I didn't want the last cycle as there was too much risk compared to benefit and thought I might have to basically throw a tantrum, however, saw ONC today and she totally agreed so chemo is finished for me. Onwards and Upwards to the delights of daily radiotherapy. Good luck to everyone who still have one to go
Hope we are all doing OK.
Pigeon, another November gal finished with chemo, yay! Hope you are doing OK as far as se's are concerned, onwards and upwards!
Clarabella, last T for you this week, and me, so wonderful this part of the treatment is coming to an end, good luck with your final infusion
My last T is hopefully on Thursday, bloods have been done and I have everything crossed that they are OK. Had frightening chemo rash on my face around a week ago, really horrible looking, and so dry too. Managed to calm it somewhat by moisturising every couple of hours, and the redness subsided, still have some scaly dry patches though. I'm a little worried about the final T, as it has taken me longer each round to recover. The past couple of days my finger ends have become more desensitised, although at the same time the chronic nail bed pain has almost gone, I can dress myself without yelping in pain, yay!
Went out with OH the other day, and we had a gentle walk around the countryside. I was fine on the flat, but a fairly steep hill proved almost too much for my aching muscles and I felt I was channeling Sir Edmund Hillary trying to get up it!
Thank goodness the weather is pleasant, it has lifted my spirits and I actually feel a little positive at the mo.
We can do this ladies
Traceybev and Tbird, congratulations on your final chemo! And extra congratulations, Traceybev, on your new granddaughter 🎉🍾
I have my last treatment this afternoon, and I’m dreading it but also strangely looking forward to it - when I get over the symptoms this time, it will all be uphill from there! I am so looking forward to starting a health/fitness regime and putting chemo behind me... and losing the weight that I gained on T 😳 💪🏃♀️
I am also having a zoledronic acid infusion today, to help keep my bones healthy with the hormone treatments that I’ll be starting soon, but unfortunately this means I will potentially have a third source of bone pain with the T and injections.
Dikat, I’ve been given 5 injections to do each round throughout FEC and T, it’s interesting how different this is for everyone. Best of luck for your first T. Before I switched to T, my chemo nurses said that if you had a tough time on one lot of drugs, then you tend to be better on the other lot. Fingers crossed that this will be the case for you.
Clarabella and Holeinone
Thanks so much for this, I feel better prepared now knowing what could be a possibility. Particularly the stuff about nose bleeds and capillaries as wasn’t aware of that. Good luck to both of you...you might find me dropping in again once I’ve started with it xx
Good luck for your first T. I'm scheduled for my last Docetaxel in just over a week - I'm HER2 negative so not having the herceptin etc.
In addition to all of the other side effects mentioned, I've had peripheral neuropathy in my hands. It's been worse after the second round but I'm now 10 days post and it seems to have stopped. For me the tingling is worse if I'm holding a hot drink (for example).
I developed oral thrush after the first D, but I see you've already got lots for mouth issues. For number 2, I did salt water mouth washes 3 times a day, ate fresh pineapple and sucked on ice lollies for the seven days after and managed to avoid a reoccurance. I also didn't get the taste changes I'd had with both EC and the first D.
I've had a lot of bloody noses and had a week of nose bleeds after the first round. I already had allergic rhinitis pre cancer so my nose was already delicate and I now can't take my nasal spray for the rhinitis, so I suspect I'm in a bit of a circle with this.
Sounds like you have enough on your plate as far as digestive issues goes, chemo certainly doesn't do anything positive to the digestive tract so I hope you have an easy ride there as far as side effects go.
I have had 7 filgrastim with each round of chemo, not sure why as I've read all the different permutations of drugs on the forum, it sure does vary!
Forgot to mention, (I'm so used to these more minor things they are my new normal at the mo) watch out for the over sensitive teeth with regard to very hot or cold food/drink, my morning orange juice has been torture on T
Also nails, I'm just using nail oil and cream (hate nail varnish and didn't want to add chemicals) but can see a colour change going on underneath them, also they become very painful, so dressing etc can be difficult, T attacks the nail bed Still have nail pain after 14 days.
Next, I've started to get chemo rash on T, it appeared after the second dose and is on my cheeks, looks like red acne, not a great look.
Wind, yes T continues the windy antisocial trend of FEC!!!
Also, finally, T has a tendancy to damage capillaries, don't be surprised with a dried bloody nose in the mornings, bleeding teeth and broken capilleries on your face, any actual nosebleeds though, contact the helpline.
Think that's it!
Hope it all goes well for you and doesn't exacerbate your existing health issues too much xx
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