September 2021 Chemotherapy starters

[Seagulls]

I went to Winchester when we walked the Southdowns Way in 2021. It was lovely to see it again. The area around the Cathedral is so lovely. A friend of mine has moved to Chichester and that has another wonderful Cathedral area too. I hope the chemo goes well. From what I hear they are better at doing it now than when I was first diagnosed in 2003 but I am lucky that I have been told both times this time and the time before that chemo isn’t going to help my kind of breast cancer. 

Seagulls

[heartbreak]

@veestar im reading though threads to get an idea of what to expect from chemo . Hope you are well - I used to live in Winchester . Beautiful town I lived them for a year in the 90's

[Seagulls]

Dear Mrs Smillie

I hope you have a wonderful Christmas. Sorry to read about getting breast cancer back after 26 years. Most unfair. I had it back this year in the left breast again. I’d had a partial mastectomy last time so now have only one real breast, the other one was reconstructed from my tum. I have had lots of allergies so that meant I have itched for months, but I haven’t had chemo. I shall be taking letrozole soon for at least five years. 

I shall probably worry about getting it in my right breast. Having breast cancer in one breast is a risk factor for getting it again in either or both breasts. Tough isn’t it. Nobody except someone who’s had a breast cancer diagnosis can really understand. My husband just thinks it’s gone now because I had an op to remove it.

Seagulls

[Rae45]

Hi Everyone!

Great to hear how you are all doing, well done all for getting through chemo! I am 10 weeks post chemo and 5 weeks post surgery and starting to feel a bit more human. Looking back it felt like such a dark winter and now I feel I am coming out of the hole! My hair is growing back and I am starting to go without a headscarf even though it is still very short. Just waiting to find out if I need radiotherapy but I am really enjoying the sunshine and slowly getting my life back. Not gone back to work yet but probably will start a phased return in May, still get tired very easily so not sure how that will go.

Take care xx

[veestar]

Hi all,

Really interested to read all your posts about post chemo, we all did it! Well done.

I feel like it was a distant memory now ( or nightmare) it's been 4 months since I finished taxil and carbo for 12 weeks, I handled chemo well, kept working part time and had minimal side effects but then EC hit me.. I only managed 1 EC, i felt so unwell with it, literally overnight it all changed, and as it was around christmas time it totally ruined my festive season. I spent xmas day on my own in bed feeling crap so decided not to carry on with the other 3 sessions). I had lost all my hair in December and was really struggling by then, new years resolution was to start to improve my mental health.

I put on weight during chemo and still struggle to lose it, I m finding the hair loss has totally knocked my confidence so I eat 🤣.

My nails went black, I know some of you ladies had the same. 

I had my first period last week, I assumed I was going through the menopause but it was a chemo menopause! It's all so random. I was having so many hot flushes..

I have a check up in May, I hope the oncology team follow me up this time, I had breast cancer 2 years ago and it came back, I had no follow up, probably due to covid tbf, but feels shocking now.

Take care ladies.

xx

[Tizzy]

Hi everyone

It's nice to hear how everyone is getting on.

I finished my chemo in December and my radiotherapy in January, so started Letrozole and Natecal D3 in February. Oncology wanted me to have Herceptin, but my echocardiogram showed a slight problem, which hasn't improved, so I decided against it. Because of the potential bone problems I have also been advised to have Zoledronate as an infusion every six months. I had my first one 10 days ago and was so ill afterwards it was horrible. And last week the pain in my knee was unbearable, so I was wondering if I would have to swap Letrozolel, but the pain has improved now (thank goodness) so hopefully things will settle down now.  On a positive my hair is starting to grow back, although there's a long way to go yet. But overall I feel like I'm heading in the right direction. And I'm grateful that I'm retired, so I don't have to get up for work every day. 

Anyway, good luck everyone. Stay positive and soon we'll be enjoying Easter and sunshine!

Love

Tizzy x 

[Mrsmillie]

Good morning to all,

It’s nice to hear everyone’s progress after chemo. I finished paclitaxel chemo in December, I was given option of then having 4 x EC but to be honest felt so rough towards the end of paclitaxel that I decided enough was enough……couple of weeks later went down with covid so I felt I’d definitely made the right decision. Started letrazole towards end of January when I’d started to feel a bit more human again. Main side effects for me are aching knees, I only have to sit down for couple of minutes then when I stand have to get legs moving again to ease knees. Also as @Somerset Bunny mentioned it does act as a bit of a laxative! Energy levels still not great, take dog for walk most days as long (as it’s not pouring down) and do minimum housework, you do well @Magenta59 getting back to work even for a few mornings is a great achievement, I know you say it’s necessity rather than choice but all the same you’re doing it….well done you. On the cosmetic front, I used cold cap through treatment but funnily enough after treatment finished my hair started coming out more than ever, eyelashes, eyebrows too…..didn’t lose all hair it’s now just a lot thinner and feels like straw…lovely…..but eyebrows, eyelashes have grown back thank goodness.

Keep on moving forward……love to all xx

[Lu_B]

Hi, everyone,

it has been a while since I checked here. Good to hear from others on more long term situation. I am so happy Spring has finally come...tough winter. It is now 6 mo after chemo and 4 after radio,managed to keep working part time, but at times feel I would like be off work. I changed from letrozole to aromasin, due to side effects (carpal tunnel, stiffness and joint pain). Still wake up during the night and maybe will try something. I also developed a pain on both shoulder and right arm is heavy. Have not gone for reconstruction yet. Last week I saw oncologist and surgeon. And will see Physioterapy for arm/shoulder pain. I am trying to loose the extra 5 kg I got during treatment....hard.

My hair is back but still short.

I still feel knackered in the eve. Breast Norse suggested an eve walk to make sure I don’t crash in the sofa at 8!

How is everyone’s else doing?

Keep strong !

L

[Magenta59]

Hi @Somerset Bunny and everyone else who occasionally still checks in here! Greetings all!

@Somerset Bunnyyour post made me smile-good we can still exhibit a sense of humour through all this. Glad to hear your active treatment has ended and your continuing therapy with Letrozole is not going too badly. I have been on letrozole and Adcal D3 for about 7 weeks now and so far seem to be tolerating it reasonably well. Joint stiffness and achiness has increased but is bearable at present. I only resort to painkillers at bedtime to get comfortable and sleep as both shoulders and hips do get sore by the end of the day. Hot flushes are more frequent during the day but coping-I take 1 20mg Citalopram at night which seems to relieve the night-time issue to a degree where I don't get woken up too often.

On a slightly worrying note, my Phesgo Inhection has been temporarily suspended as my last echo has shown rather an alarming change in my LVEF which has dropped from 53% back in December to a fluctuating rate of between 45% and 50%. They don't want to cause further damage so my treatment for the following day was cancelled and mu Oncologist had to involve cardiology again. I now have to also take Ramipril and Bisoprolol to try to get my heart pumping more effectively again. They must see a lot of this with Herceptin as they have made further appointments already. Another echo on 22nd, back to Onc on 5th May and hopefully back on my Phesgo jab on 6th. I do hope we get back on track soon as my 2nd line of defence is currently gone. I need these jabs longterm with my cancer being secondary. Good job they do these echos regularly-I wouldn't have known I had a problem-I just put the fatigue and occasional breathlessness down to the after effects of chemo and assumed it would pass eventually. Just shows how you can get it wrong.

Feeling okay on the whole so started back to work 3 mornings a week last month. Managing okay so far with that, so once I have been back to see the Onc and I know I am okay again I will pick up a fourth morning and hope by June I can manage to do 5. That, I believe will be my limit. If I can manage another 2.5 years of that topped up with my ESA and wobble through to retirement I will feel I still had a purpose! No good planning too far ahead-the future is  a grey area for me. If I can reach retirement and have a few years with my partner, my family and grand-daughter without worrying about dragging my ass out to work when I feel half dead with fatigue, I will be happy! I would love to retire now-but financially it is impossible to make ends meet in these times of rising prices. It does add more stress on top of everything else we have to deal with, but there is no option really. Just trying to focus on keeping well and looking after myself so I can manage!

Your hair is coming in really well! Mine is still very short-just like peach stubble-but coming in dark which has surpised me! Eyebrows growing in much faster and I just need to give them a bit more definition as they are a bit patchy. I got quite handy at it though so only takes a couple of minutes. Lashes coming in well and better than before chemo! I still have the annoying permanent sniffle and runny nose-it hasn't improved much so I think it will be ongoing. Always supplied with tissues. My nails survived the Paclitaxel with the help of my Polybalm serum. Sorry to hear you lost yours-that is really quite horrid for you and must have been painful! Equine related toenail loss is bad enough-and thats usually just one toe-I can't imagine losing nails one after the other like that.

Keep well Sue and everyone else. Always good to hear how you are doing. Can't believe it is almost a year since I started this journey and look how far we have come! And plenty of time left to achieve a few more goals yet! Take care. xxx

[Somerset Bunny]

Morning ladies,

Just thought I’d drop in and ask how are you all are?

I am now two weeks post radiotherapy, boob is still a bit sore (told this is normal) and looks like it’s spent quality time on a beach in Barbados but relieved the daily 50 mile round trip to Costa Del Musgrove has finished, three weeks of that was wearing to say the least. I have managed to loose the chemo steroid weight and my hair is growing, tbh more relieved my eyebrows are returning, I never perfected drawing them on, my attempts would have made Ronald MacDonald proud 😂. My finger nails all evacuated my ailing body come the end too but are (very slowly 🙄) regrowing.

My relationship with Letrozole seems to be going well, it has upset my constitution a bit but on the plus side this has meant I no longer have to take my daily dose of fybrogel (I have had a prolapse for years) and I am able to endure the daily hot flushes and joint pain. The only negative is that is has exasperated my carpal tunnel syndrome in my right hand so I have been referred to orthopaedics (I feel I am gradually working my way through hospital depts as long as I give the morgue and maternity as miss all will be fine 😂😂)

I have an oncologist appt booked mid May, which I admit I am a bit anxious about just hope they have found nothing else cancer wise, apart from that mentally and physically I am doing ok. 
Hugs to you all, Sue 😀Two months post chemo

[Tizzy]

Hi Jane and everyone

I just read your post and really agree with you about the fatigue, getting out of breath and generally being so unfit - and I wasn't that good to start off with. I've always had a weight problem too and with lockdown and then all the cancer drugs it's ridiculous. I completed my chemo in Dec and then finished my radiotherapy last week and started on Letrozole and NateCal D3 this week. It's one excitement after another! I hope there are no major side effects I'm just hoping that with the Spring I will find the energy to start doing a bit more, getting out for regular walks and starting to socialize again.

I wish you all good luck on your journeys going forward. Take care of yourselves. You've all been amazing, and thank you for your company.

Tizzy xx

[Magenta59]

Hot flushes! What a bloody pain they are! Told BCN a month back as they were preventing me sleeping and always seemed exacerbated by chemo. She said to contact GP as there are various options. So I am on 20mg Cilalopram. hard to say how well its working yet as it can take 6-8 weeks to make a difference. It is slightly better I believe. When Letrozole starts, it will no doubt get worse, so a higher dosage may be required. Will need to speak to GP yet again. There are other antidepressants such as venlafaxine, or they even give Gabapentin which is an anticonvulsant. I think Citalopram is the one that gives least side effects to the first to try. Hope you get it sorted. It ruined my sleep and made me feel even more fatigued. Hoping I have turned a corner as I seem to be getting a bit more sleep now.

Janexx

[Magenta59]

Hi @Somerset Bunny @aliess @veestar @Rae45 and everyone else still hanging onto this thread. Well I finished chemo on 19thJan and saw my Oncologist yesterday. Think I was expecting better results after this ordeal, but CT scan results show my liver met has only shrunk by 3mm. So it is still there and I will just have to live with it. I have a prescription for Letrozole and Adcal to pick up, but he said to wit a couple more weeks to start it and allow more recovery time. Dreading taking this stuff but no choice if I want to keep this thing stable. I am very fatigued, out of breath pushing  wheelbarrow to the muckpile or going upstairs, and legs just keep turning to jelly. I feel there is no strength in them some days! Can't believe how unfit I have become! I hope to go back to my work 1st March, but wonder how much I will be capable of. I had planned to do 3 hrs a day as well as going to the pony, but this may be unrealistic. I reckon i will have to start on 2/3 mornings and build up from there. And the Letrozole may make me feel worse than I already do. But ESA alone will not pay my mortgage and bills so needs must and my lovely cliwnts have supported me for nearly 8 months. It is time to repay their faith in me coming back to do their cleaning etc. I will just have to suck it and see! As the saying goes....Hair has started growing-a fine stubble that is practically invisible, and little sprigs that have somehow remained. Reall y rocking an ostrich look too @Somerset Bunny . Thank God for wigs and cos it's Winter, LOTS of hats! Your ail problem sound awful! I have lost a fair few toenails over the years in equine related incidents, and it is hell! My nails are fine but I have treated them consistently with Polybalm, and I think it did its job. So glad I found it. It was worth the £38 it cost.

It would seem they are going to book me a DEXA scan, and that Iwon't need Bisphosphonates yet. No radiotherapy either, so time to pick myself up and try to move on to some kind of normality.

Take care everyone. It's great to hear how you are progressing. Keep on keeping on! We have got this!

Jane.xx

[veestar]

Well done everyone.

Is anyone experiencing hot flushes and found a solution? I m finding it unbearable.

xx

[aliess]

That’s great news Sue & @Rae45 

another huge step forward. It certainly is emotional when you can take that step back to focus on these past months.

also impatient for hair growth, but it’s getting there. 

Best of luck with your further treatments! 
💕

[Rae45]

@Somerset Bunny well done on completing chemo, I had my last one yesterday and agree it is a huge relief but also emotional. I had a few tears as I walked out of the ward, not because I was sad to be leaving that place 😆 but it was an acknowledgement of the journey it has been. Next stop for me is surgery at the beginning of March. 

Best wishes for your radiotherapy and to all you ladies, thank you for helping me through this. 

I can't wait for my hair to grow back!!

Xx

[Somerset Bunny]

Well ladies, Hope I find you all as well as can be. I finally finished chemo yesterday and the relief is real, it was a bit emotional come the end and I was not convinced it was all done until I seen the empty drip bag (as you know my chemo journey has not been without issue) but onwards and upwards. Picc line has been removed so once again I can wear what I like.

My finger nails are shot, I'm loosing the majority which is painful as the new nail grows up underneath the old putting pressure on your finger tips, doing up buttons is a task!🙄 I have also put all my weight back on thanks to all the steroids, hoping to shift that before the hormone therapy begins. As for my hair well who really cares, it was my main worry at the start but in reality it was easier to deal with than other side effects, hopefully it will grow back but I am atm a cross between a fuzzy felt board and an ostrich, thankfully the remaining fluff manages to keep my head warm at night 😂

I have a radiotherapy planning CT scan and bone density x-ray booked for Monday and then that is it until the 3rd of March. I hope all those who have progressed to radiotherapy are doing okay on it. Letrozole is also ready and waiting for me to start at the same time as radiotherapy, hoping I do not experience too many side effects with that. Thank you all for your support in the past five months, it has been invaluable. Sue xxx

[Magenta59]

A rather belated Happy Christmas to you all. Hope you all managed the best Christmas you could. I had a good one as had chemo on 7th Dec so well recovered in time and I have had a few drinks too-I thought "Sod it!" How much harm can it do in recovery weeks when the chemo side effects are largely over!?! My next one is Wednesday so my New Year will be a wash out! LOL! And my birthday on 2nd Jan. But not bothered. We had a nice Christmas and that's all that matters. I even got to see my 3 year old grand-daughter today so I am well pleased. Have not seen her for months as she has had continuous colds from nursery. I didn't want to go and catch one on top of everything else.

Take care everyone. Jane.x

[veestar]

happy christmas lovely people , its been a shit show but your posts have made me smile .xx 

[Magenta59]

Hi @Somerset Bunny @Tizzy and everyone else here!

Like others, I have not posted for a while, but keep up to date with the posts. @Somerset Bunny what you are saying about Docetaxel is so right. It is a particular;y harsh drug, the one I started on. I felt so ill after the first chemo, I wondered if I would make it through the rest! It was the second one when it went tits up, and they had to abandon it. Now on NAB Paclitaxel and it is a breeze by comparison, even though I feel like I have been run over by a truck for about a week afterwards. Docetaxel can play havoc with hands feet and nails-I guess I am lucky to be on my current treatment as what you are experiencing souns bad. I hear of ladies having such dreadful peripheral neuropathy they can't walk! It can happen on Abraxane, and they always ask me about tingling etc in hands and feet, but so far I am okay. It makes me wonder though, how well this Abraxane is treating my secondaries when I don't have such dire side effects? Is it still doing the job? I will find out on February 1st when I next see my oncologist,by which time I will have had a further CT scan and my last infusion. I do feel for you having to have this evil brew weekly-I do hope you manage okay with it. Is it smaller doses spread out over 6 weeks instead of 2 bigger shots every 3? Everyone seems to have different treatments plans, and even change from one drug to another after so many cycles, dependent on their particular cancers I assume. My treatment plan seems relatively simple compared to some of the others I have read about. I don't think I need radiotherapy either which is a bonus as I can get back to work a lot earlier in that case.

My silver lining is also having a "good" week over Christmas-I WILL be having a drink too! I will be knocked out over New Year and my Birthday on 2nd Jan by chemo on the 29th. Not bothered as we never do anything at New Year anyway.

Thanks for the tip re. Look Good, Feel Great.I will have a dabble with that I think and book myself a zoom session. Like you, I haven't felt too bothered about the hair loss-mine is all but gone now-I am currently achieving an "ostrich" type appearance! Lol! I don't use the wigs much for everyday use-hats nice and simple and far more practical when dealing with equines! My lashes and brows are very sparse, but still hanging on. I have been bothered more by this aspect & I have resorted to using my eyebrow kit now to make myself look "normal". Decided I am not needing the false lashes yet & I am hoping it stays this way. That will be a more tricky procedure. Someone mentioned if you still have some hair left after 4 cycles you might just manage to retain it. We will see! Weird how leg/underarm hair etc is still clinging on! You wouldn't mind losing that so much!

Have the best possible Christmas everyone, despite our circumstances. It's a good excuse to delegate some of the jobs! I have simplified it as much as I can, and cut down this year on the anount of cards I sent-been meaning to do this for years so have taken advantage of my situation this year to achieve this. The precedent for next year is now set!

Jane.xx

[aliess]

Hi Sue @Somerset Bunny 

I am sorry, sounds like you’re having a really rough time of it. Hopefully the lower weekly dose will be more gentle on you.I know what you mean about the hair loss. It is trivial compared to some side effects. I really do hope you can enjoy Xmas as different as it may be again this year. Lucky you having steak and chips 😋. I have to endure the turkey dinner 🙄.  I’ve got my last chemo tomorrow which was in the balance as I had to have my pic line removed last week and it was infected.

here’s to a better year in 22 for all of us 🥂 

💕 

[Tizzy]

Hi Sue, like you I haven't posted in a while, but I read all the updates. Also like you, my last dose of chemo really hit me and virtually wiped me out. I've been on Docetaxel and Carboplatin on three weekly cycles. I'm finding walking difficult as my legs and back ache and I've become very breathless. I told the oncologist and she said she would reduce the amount today, which is my last one. Normally I've been ok for the first few days, so I'm desperately hoping I'll be alright for Christmas Day as I hope to spend it with my family. My husband has been brilliant too, as have all my friends and family, but I can't wait to spend time with the grandchildren, I've been virtually isolating so I've missed them so much.

So as part of my festivities next week I have my pre-planning CT scan for my radiotherapy due in Jan and an echocardiogram, because they want to give me Herceptin as I'm HER2 positive, but they found a minor problem with my heart which they are trying to sort out and the oncologist is keen to get it sorted, but I'm really not convinced. Has anyone any views on Herceptin?

This cancer journey certainly tests us. I know I'm getting off lightly compared to lots of people, but it's still a struggle.

Anyway, Merry Christmas everyone and I hope 2022 is a much better year for all of us.

Love Tizzy x

[Somerset Bunny]

Morining ladies

Not posted much as been so ill following my last docetaxel round...it literally floored me...bastard drug! Everyone worries and mentions hair loss but tbh that has been the least of my worries. That particular side effect for me has been a breeze in comparison to others I have encountered during my chemo shit show, mind you I've never been that concerned with hairdressers or make up, haven't been wearing the latter since early September and definitly find it so much easier just to bung a hat on in the mornings. If you want freebies though get on the Look Good Feel Great web site and book a zoom session they send you a truck load of full size stuff to try Chanel Clinique, Bobby Brown etc which I will try when/if I am out of this.

Pissed off today after having to make an unexpected dash to visit my oncologist this morning, due to mainly my hands swelling up and now peeling since the last dose. They have now given me a different end date, as my meds are changing, as is the regularity of how it is administered, no longer 3 weekly but weekly for the  six next weeks from the 30th Dec....roll on Valentines Day whoop de do! Husbands supportive (as always, my rock) but ecstatic as he's just realised he'll be on food shopping duties until Easter 🐰🐇🐣😂

The only silver lining in this is that at least I'll be able to taste my Christmas dinner (no turkey here though to much of a faff ...steak and chips!). I've been told I can enjoy a tipple definitly something I intend on doing. I know things could be worse for me regards fecking cancer but my God sometimes don't you just want to disappear into a dark hole for a while and mentally reboot? Anyways people on a brighter note hope you all have the best Christmas you all can in the circumstances...much love and hugs Sue xxxx

[Rae45]

@veestar I am at the same point as you, finished 12 weeks of paxil last week and now have 3 x EC over 9 weeks starting this Friday. I am very anxious about EC too like you @Mrsmillie I have heard it can be quite harsh and side effects quite bad. I haven't had surgery yet though so I feel that if it is continuing to blast the bugger then it will be worth it. I am also trying to think that I have got through 10 of the 12 weekly treatments (missed two due to low bloods) so three more should be doable. At least there is a break in between each one. We can do this!

My hair has pretty much all gone, eyebrows are thinning and and I think my eyelashes are starting to fall out too now. Still, going to put the Christmas decorations up this afternoon to cheer myself up and try to think of something other than the c word for a while.

Have a lovely Sunday ladies.

xx

[veestar]

@Mrsmillie 

Very interested to read your post. I am feeling exactly the same.. I finished my paxil last week and due to have 3 EC starting this week, over 9 weeks which I feel is dragging it out. and like you I am scared of new side effects..

Other lovely people on this thread are we likely to lose more hair ( I have lost most but not all yet) haven't lost eyelashes.

Have a lovely sunday peeps. Thinking of you all.

xx

[Mrsmillie]

Good morning to all,

Happy to say I finished 12 week course of paclitaxel on Thursday 😁 but now possible 4 x EC which I’m in two minds about as I’ve heard some horror stories re side effects ( just about managed with paclitaxel side effects ), I wonder whether anybody else has decided against further chemo…..mine was all an ‘add on ‘ after a high oncotype score, it was put to me as a bib and braces course of action as no lymph glands were involved and mastectomy completely cleared bc.

Bit grim outside here today, hope everybody is cosy indoors.

hugs to all x

[louby_lou69]

Hi lovely ladies
Not posted on here for a while (but been reading your posts) as I've been hanging out on the October board.

My 3 EC are done, in the past  and forgotten! I had my first paclitaxel and Herceptin on Tuesday, today I've definitely had a steroid crash and my whole body aches - not sure which drug is responsible but as it's raining and miserable I think it will be a sofa day.

Hope all of you amazing people are doing ok. I have 8 treatments left, due to finish on the 2nd February all being well. Never in my life have I wished the weeks by so quickly.

Have a good Friday

Lou x

[Magenta59]

Thanks @aliess @Kitkat23 @Mrsmillie for your support. I did raise all my concerns months ago when they were being indecisive about my dx and not getting my chemo started. I had a bit of a meltdown, but really never got any answers. It's too late now to change anything so I just have to get on with it. Only good thing that came out of it was my getting a Psychology referral. The Dr I spoke to was lovely, we talked for an hour:by that time we had actually got started with chemo after a 13 week wait, so I was feeling more positive. The "what ifs" are always at the back of my mind. I could blame myself for not finding the lump earlier, but it doesn't do any good in the here and now.

I have heard Anastrozole is not as bad as Letrozole, but no way of knowing until we're on the damn stuff! At almost 63 I should be way post menopause but mine was very late starting-I hadn't even been on HRT for 5 years when I was diagnosed and had to stop it. Within a very short time the hot flushes started again, with a vengeance! So I am in my opinion still there! How much worse it will get on Letrozole I can't contemplate! I never get a decent night's sleep now! I can be taking a layer on and off 6 times in an hour-it generally starts in the evening and carries on through the night, some worse than others. I am grateful for the colder weather as it makes it more bearable. Why the hell do women have to suffer like this? It's like your own body is trying to finish you off just because you are no longer productive! The fatigue alone would do it. Before I started HRT I felt so bad I was struggling to get through my day's work due to tiredness-I probably shouldn't have been driving really! The HRT gave me a decent quality of life again, but now I'm almost back to where I was before I started it!

It's good to know about the different brands of Letrozole etc and the varying side effects with each. I will certainly bear this in mind and pass this info to my GPs who will probably be clueless in this department.

Hoping everyone has had a good weekend, weather here in York not great today! No riding for us, just a lot of dirty jobs to do, enhanced by acres of mud.....

Jane.x

[aliess]

 

[aliess]

Morning Ladies

I thoroughly recommend this. The ladies at benefit were great and showed me how to use and what colour etc. As someone who’s not used to brow faffage I found it really easy and the look really good.

ali

[veestar]

Hi all,

It's so bloody tempting to finish chemo early, who decided on the number of weeks.. I have 3 EC left.. tempted to go for 2 and skivve off the last one. I always was a rebel!!🤣

Love reading your posts everyone, food for the soul in this journey.

xx

[Mrsmillie]

Good morning all,

@aliess I haven’t tried the tattoo transfers, they’ll be on my shopping list today, anything is worth a try. I had first brush with bc 26 years ago, I didn’t have chemo but was on tamoxifen for 5 years it didn’t cause any problems at all, hope it will be the same for you 🤞🏻.

Sending hugs x

[aliess]

Hi @Mrsmillie 

you’ll soon be ringing that bell! 3 to go for me due to a 3 week break. 

I'm starting tamoxifen next month. Hoping it will be ok 👍🏻 

My eyebrows are very sparse now and I tried the tattoo transfers last night. They look ok but Not sure until i see them with make up. I’m just hoping everything grows back! 

ali

💕

[aliess]

Hi jane @Magenta59 

I too am worried about staring tamoxifen next month. I’m already having horrendous flushes and I’m considering accupuncture. I spoke to the onc last week and told him I thought it would be anastrozole but they’re not convinced I’m menopausal just yet. He told me tamoxifen was better anyway, I’ve read the opposite. @Kitkat23 @Good to know about the different brands!

jane I am sorry you feel let down with your treatment plan. It makes it harder when you have no faith in your team. Have you tried speaking to your specialist nurses? Maybe you could go in and have a good chat.

sending love and hugs

ali

💕

[Kitkat23]

Hi Jane

seen your post so jumping on here....hope you don’t mind.

i have had primary BC 3 times.... finished active treatment for the  last diagnosIs in Feb this year.  I am taking letrozole For 10 years..... I was initially prescribed Cipla  by the hospital which I could not tolerate at all ( extreme fatigue.....low mood and lots of joint and muscle pains ) ..... I’m now on Accord which suits me a lot better....my GP now writes the brand on my repeat prescriptions and I am now always dispensed Accord brand.....( after my 2nd diagnosis I tolerated Tamoxifen Accord well so this brand seems to suit me)..... it may be a case of trying a few brands until you find something suitable for you..... and if you don’t seem to tolerate any then push for a prescription of Femara ...

 my friend did this....GPs were initially a bit reluctant to prescribe as it’s far more expensive but did eventually after she pushed.

Like you say you could be on letrozole for a good length of time so quality of life for you is of course very important.

i see from your post your are returning to work....definately ask for any reasonable adjustments you need ....you can apply for an Access to work assessment.

wishing you well .... take good care

[Magenta59]

Hi @dizzyc @Mrsmillie

thank you for the words of reassurance regarding Letrozole. I will just have to wait and see how I am, and then plan my return to work. As you say, if one brand is bad, I will ask to try another. I just hope my GPs are aware of this issue with side effects varying from one brand to another. If not, I may need to educate them! It's a lifetime of taking these things, you do not need to be debilitated by them when you need to get out to work each day.

3 more Abraxane for me, No 4 next Tuesday. I should get No 5 in before New Year and last one around 3rd week of January. I will also get a CT scan in January but no appointment as yet. They are going to request it 2nd week so hopefully before last chemo. I don't want it the same week that's for sure as I usually feel like I've been run over! I just go into hibernation for a week!

@Somerset Bunnyit sounds like you are having a frustrating time of it. I can totally sympathise with you regarding the Egyptian consultant. I got a Chinese consultant for my first Oncology appointment back in June and I could barely understand him. His English was not great and with a mask on I couldn't grasp what he was saying when he told me my neo-adjuvant chemo was not going ahead. Also he had not read my notes, and kept tittering nervously as really it turned out he was not really sure what he was talking about! I got the lowdown from my Macmillan nurse when she rang to find out if I had a treatment plan. She was appalled as I had just been sent away in a state of shock and confusion, wondering what on earth would happen now! I refused to see him again as I was so upset! In the end they did surgery first as time was running out-you have to be treated within a certain timeframe and as chemo wasn't happening, my surgeon jumped right on it. It was all to do with an inconclusive HER2 biopsy: oncology felt chemo upfront no longer appropriate as the results had come back borderline twice.However further biopsies done after surgery showed it was HER2+ after all! I could have had  that chemo to shrink my tumour and save my lymph nodes after all! I may not have needed the ANC which has left me with permanent nerve damage and cording which nothing can solve. I am stuck with it! No amount of stretching makes it go away, and the physio I saw only once said she had seen worse and my mbility was actually good! It doesn't feel "good" to me! It bloody hurts all the time and the stretching really tugs. If I stop doing the exercises I know it will get worse so this is also a lifetime thing, stretches twice a day or else. I knew about it when I felt too ill to do them a couple of times after chemo floored me, and it had got worse in literally 2 days! Not to mention the lymphoedema risk! And the traipsing back and forth to get a seroma drained twice a week after the drain came out. Of course there is no way way to tell how it would have panned out, but it does make me cross that I never got the chance to try it. My outlook may have been different if there had not been a delay which allowed it to spread from 1 node to 10, thus putting me at more risk. My prognosis now is stage 4 with liver mets, and maybe I could have been spared this outcome if I had got my chemo upfront. It's always at the back of my mind, that my outcome could have been different. But it is what it now is, and I just have to hope that this 6 cycles of chemo will work to put it in remission, and that the continuing Phesgo and Letrozole control it for a few years at least. You have no way of telling how long you have left on this earth, and if the Letrozole makes me really feel ill, I would seriously consider stopping it. Maybe quality of life will be more important than simply existing for a few more weeks, when we are getting towards the point where nothing is working any more. Sorry I am being maudlin now, but no-one wants to address this at the hospital-no-one mentions it when really the prognosis with Secondary BC is 2-3 years! It's not long! And if treatment No 1 fails, it could just be constant chemo with short breaks in between them when we are okay for a while, before it fails again. After line 3 we are basically written off! I am not ready to go at 65! I would like to think I could at least draw my pension! Lol! I have paid enough into it! Fingers crossed for all of us, not sure who else has had a Secondary diagnosis but it is literally a death sentence. It will get us in the end, but it could be sooner rather than later. Not a cheering prospect. It does make you re-evaluate your life and put things in perspective. I never did suffer fools, but I have no time for anybody's s**t these days! I am sure you can all relate to that!

I will be glad when chemo is over and I can start to pick up my work etc again and get back to some kind of normal. I sure won't be ringing any bells though. For me this will never be over until it finishes me off. Just being realistic. It helps to get things in perspective! And get my house in order!

Take care everyone. Jane.x

[Somerset Bunny]

Morning ladies,

I hope I find you all as well as can be expected. Me well I had my first docetaxel chemo yesterday, thankfully no issues on administration and feel better today compared to when I was on FEC, but what an awful time I have had re the oncologist! The chap who calls me is Eygptian so not easy to understand on the phone, the call Monday did not fill me with confidence. Firstly he got my appointment wrong told me I was visiting the hospital on Tuesday (I was in Wednesday) so I asked him if he had the right women (he had failed to ask my name and date of birth when I answered the call) but apparently a day or two each side is not a problem, it is for me as it is a 50 mile round trip! The conversation filter in my brain then switch to off.  I decided to ask a few questions . First one being how will they test that all my treatments have worked, I was told no scan would be done and that as my therapy has worked for millions of other women with my cancer, it was removed in good time and my oncotype score was low I should be fine hardly reassuring, and why chemo then??? So Dr how much radiotherapy will I need? 25 sessions apparently...most others I know have had 15 but I can stay free of charge at the hospital if I want to, for a an appointment that short jog on although it will take me longer to get there and change! I then get to my chemo session, running late, nurse comes out to apologise and asks what drugs I have taken, turns out I have been prescribed the wrong ones (they'd given me the ones for FEC), so had to have an additional infusion of steriods prior to chemo, so what was meant to be a 2 hour max appt turned into 5 hours, I did again turn the conversation filter to off and the nurse got it...patient liason service has been contacted this morning as I am loosing faith and more worryingly trust. What this space!! Much love Sue xx

[Mrsmillie]

Good morning everyone,

Just to add to the letrazole discussion, a friend of mine has just finished 5 years on it and experienced no side effects at all…..I will be taking it for 5 or 10 years after chemo ( going for number 11 today ), I think like all the treatments it’s hard to say what effect it will have on you, have to keep everything crossed that you are one of the lucky ones! @Magenta59  my eyebrows have all but vanished and it has upset me more than I thought it would, on the plus side my fringe is just about hanging in there, a lot finer but can still just about cover lack of eyebrows!

Have a good day all x

[Lu_B]

Hi, Veestar, yes please, But how can we chat privately, since it is a particular issue? Thanks, x

[dizzyc]

Hi @Magenta59 I’ve been lurking more than contributing but I wanted to say I had a few months of letrozole before my chemo started and I was dreading it too. But I actually I really didn’t noticed anything very much at all. I realise I’m one of the lucky ones and it all might change for me when I’m back on it, but I wanted to add a small Christmas bauble of reassurance! I’ve also heard that different brands have different side effects so it might be worth noticing the brands that suit you better and request those as time goes on. We’re on them a long time! Number 5 chemo for me tomorrow, bring it on..! Cx

[Magenta59]

Hi @Lu_B ,

                    here's hoping mine grow back in fairly soon. The loss was barely noticeable at first, but after the 3rd treatment at least half gone, to the point they are barely noticeable now! Pencil or brush and powder every day-it makes me look strange otherwise!

Sorry about the Letrozole issues-that will be me when chemo finishes. It's odd how I can't wait for it to be over, but I think I am dreading the Letrozole to a much greater extent because there is no end to it, and it will not be pleasant by the sound of other's experiences. How long did it take for side effects to kick in? I am worrying about how I will cope when I go back to work. It is a very physical job I do, and with constant pain and lack of energy due to bad sleep caused by hot flushes, all thanks to these tablets, I am not sure how I will cope! Hope your GP sorts you out-it really sounds horrendous what we can ed up having to endure just to stay alive!

Take care , Jane.x

[veestar]

Hi

@Lu_B 

If you want advice I had my re construction 2 years ago after a double mastectomy

x

[Lu_B]

Hi @Magenta59 and everyone else,

It is quite tough loosing the hair and then eyebrows. I had big eyebrows loss few weeks ago and had to start using the pencil. Then, All of the sudden, it started growing back again, a bit thinner but good enough so I don't need to use the pencil anymore. So, there is hope. Had hair definitely started growing again, but not enough to not use a cap and slightly patchy as well. We have to be patient.

Good to hear that you are still getting out there to look after the horses, my 10 year old daughter loves riding. I a, now struggling with letrozole side effects, hoping to get a call from GP today

The weather has been tough here in Scotland earlier this week but milder now.

Saw my surgeon last week and got anxious when discussing reconstruction as I am not sure what to do....

Lots of good vibes to you all, keep strong.

[Magenta59]

Thanks @veestar my arm is feeling a lot less sore today. It was itchy yesterday as well which was quite annoying. As is this constant runny nose-yet another irritating side effect of the chemo. Its like having permanent hayfever! Been to the oncologist today-just a check-up on my treatment really. He said it may not be that effective a vaccine given my immune system being low, so all this discomfort for something that may not work that well. I decided not to bother with the flu jab for exactly this reason. SO I guess i just keep shielding as usual and stay at home as much as possible. Business as usual in other words. Just avoiding the supermarket at busy times is all I need to worry about!

Weather here is grim-pouring rain now after being frozen solid for 3 days. No rehab riding yet again. Just mucked out and did my feeds and haynets and came home again. I am a fair weather rider these days. No fun in getting soaked when you already feel meh!

Hair-well what can I say? It's pretty rough on us this treatment, in so many ways. Funnily enough I am more dismayed by my thinning eyebrows and lashes as it's more of a faff to disguise. And some of the products are not that great unfortunately. Sticking with my Boots No7 eyebrow pencil after trying the microblading multitip pen and finding it unsuccessful. Eyebrow powder with a brush and stencil is not too bad, but more time consuming and fiddly! Simple is probably best! And a fringe on the wig does disguise things to a degree. Hopefully we will have hair again by this time next year! My dread is my cancer coming back elsewhere as it is stage 4, and having to go throughthe whole hair loss thing again. getting a CT scan to check the liver met in January. Fingers crossed it's gone!

Take care, Jane.x

[veestar]

@Magenta59 

I hope your vaccine booster side effects are improving Jane, `I work in a vaccination clinic and your side effects are normal but as you have a weakened immune system they are hitting you harder. The pain in your should be subsiding now, fingers crossed. Take paracetamol and Ibuprofen.

I had my booster last week and I felt pretty meh for a day or two, so definately mention it to your oncologist if your symptoms drag on. 

The hair loss is so bloody unfair, I GET IT that all us ladies hate the hair loss, it's the only thing that has made me cry this whole process and I look in the mirror and hate what I see but by next summer, back on track with a full head.

Snow in winchester yesterday, are we all hoping for a white christmas.

Lots of love🤗

[Shi]

Jane do please check with your team in the morning about your arm ❤️ Just to make sure all ok. Keep eye out for swelling of hands and fingers and if you get short of breath 111 it ❤️ Keep safe you are all doing amazing ❤️💕💕✨✨Shi xx

[Magenta59]

Hi @Rae45 @veestar @Somerset Bunny and all the other ladies checking in on this thread, hope you are all okay this weekend and have not been affected by a power outage! I feel lucky to be on solid fuel CH during this type of weather! At least we can stay warm even if we have to light candles! Don't know about the rest of you but I seem to be feeling the cold more this winter: it could be the chemo? I am looking Uncle Fester like too-so little hair left now, just sprigs sticking up-like an ostrich!! I am in headwear all day as my head is just freezing!

I still have 3cycles left-next on 7th Dec. Half way there but boy will I be glad when it's over. Fingers crossed bloods will be okay next Monday as I had my 3rd Covid vaccine on Friday morning. I got Moderna: my 1st and 2nd doses were Astra Zeneca.(had a really sore arm for 2 wks after the 1st, but fine after 2nd) Felt okay straight after the jab but by Friday evening I felt rough-could not stop shivering-and my arm felt like someone had jumped on it! Pain kept me awake most of the night and it wasn't much better when I got up. Had to enlist my friend to see to my pony on Saturday, and just stayed at home and tried to keep warm. Had a nice hot bath before bed and got a better night, but it still hurts today, and is also itchy. I wonder if I would have got this reaction if I had just been given the original vaccine, as the 2nd one was fine. A bit concerned about my bloods being off next week, but Onc told me to get it, so what can you do? Has anyone else had problems?

Keep your heads up girls:we have come such a long way already! it does seem like a marathon at times!

Jane.x

[Shi]

Verster ❤️ Found having tinsel wigs to rock over Christmas helped, might not be for you but maybe worth a try just because you have a why not moment ❤️ And bit of ✨✨✨✨ might help ❤️ Or few coloured bobs if the tinsel ones too out there for you ❤️💕💕✨✨Shi xx

[Rae45]

@veestar I completely relate to that, on a bad day I think I look like Uncle Fester from the Addams Family! By the way it was two pax that I missed not carbo. Chemo brain is really a thing isn't it! In my chemo session yesterday Christmas songs were playing and that cheered me up a lot. 😄🎄

[veestar]

@Rae45 

@Somerset Bunny 

Thanks for the words of encouragement, much needed I 'm sure we are all sick of being a "patient" now,  & I look in the mirror and because of the hair loss I don't feel "myself anymore". which is know is really vain but not easy for xmas party season 😉.

Definately fear of the unknown with the new drug too.

Maybe If I go and eat a few more mince pies and put the christmas tree up I will feel happier.

xx