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October 2020 Chemo Starters

mrsquincey
Member

Re: October 2020 Chemo Starters

Aww I feel so happy albeit a lil jealous that you are all at the end of chemo. I still have 3 more docetaxels to go ( should of been two but have to defer last weeks to this week. Due to high WBC) feeling deflated Tbh.

Went in to get chemo temp decided to peak to 37.8. So loads of tests etc and being told I have a infection somewhere was sent away with antibiotics. Then to have to go back on the Thursday to have bloods re checked. Things had came down by then so hopefully having chemo on Tuesday. 

 

Then only 2 left. 

Just wanna get this chemo over with 

 

Not a jockey
Member

Re: October 2020 Chemo Starters

Hi UmLydia,

My breast care nurse told me not to wear underwired bras for at least six months to make sure everything was fully healed.  You'd probably need to sew some ribbon into them to hold the prosthesis in place.  

I got mastectomy bras from M&S - they don't have much choice but they are incredibly comfortable - and also from Amoena.  I find that the prosthesis gravitates slightly towards my remaining boob but is much more realistic than the 'softy' I was given at the start because it has some weight to it.  Amoena is the company that made my prosthesis which I got free on the NHS.  Their bras are better with the prosthesis because there is less fabric at the back of them.  When you start looking on the internet there are loads of places to get them.

Good luck

 

NAJ xx

UmLydia
Member

Re: October 2020 Chemo Starters

Hi Beaglesmum, we have the same treatment plan. I agree surgery after docetaxel seems daunting, I didn't feel I recovered before the last one last week, I was still tired and aching legs. We will have to be really kind to ourselves and let our bodies heal. At least the doctors will not push me to go back to work any time soon. 

Chesterbrownbear I still feel really tired. The effects last longer each time, even with walks and exercise. 

Thanks NAJ you help me put things into perspective. I am pretty bolshy too, and part of me doesn't give a toss about having only one breast. I never wear my wig either. But another part is upset to lose my feminine figure, for me really, not anybody else. I'm sure I'll get used to the prosthesis. Maybe I won't even bother with reconstruction. At least I will have time to adapt and think about it. Of course it isn't important really, not when you have imagined your own funeral and not seeing your kids grow up at the beginning of the diagnosis. It's true it's a blessing to have quality treatment, but I think I need to feel sorry for myself and wallow a little bit to move on afterwards. 

Allie A did you get a date? I don't have to option of immediate reconstruction but i'm relieved I don't have the choice. 

Please anyone who had a masectomy already, can you still use your old bras with the prosthesis? If not where do you get special bras? 

 

 

York-75
Member

Re: October 2020 Chemo Starters

Nice to hear how you are all doing - the end is in sight!

For those starting radiotherapy on the left, I thought it was worth mentioning that for my treatment, they did it in different ways based on how long you could hold the breath for. I could hold for 25 seconds plus, as I like to yoga and scuba dive 😆 but if you can hold for 15 or 20 then they just do it in more and shorter bursts. So no need to be nervous, there will be options. Xx

linflo58
Member

Re: October 2020 Chemo Starters

Apparently you only need to hold your breath if the treatment is on the left hand side of your body. I wa# all prepared but didn’t need to as it was on the right.

Linda x

Not a jockey
Member

Re: October 2020 Chemo Starters

Hi Allie_A,

If you want a mastectomy you need to make sure firstly that it is what you really want and secondly that your surgeon knows that.  I think there is an assumption that every woman wants a lumpectomy.  Personally I couldn't have coped with a lumpectomy - I knew right from the off that I wanted a mastectomy.  I just wanted it sorted in one go as quickly and simply as possible and I have not regretted that decision.  I couldn't have coped with going back in for more surgery.  

As for reconstruction that's something I know I don't want - but my neighbour had a mastectomy in her late 20s and then had reconstruction when she was 50 so you have time to think about that.

Hope you get a date soon - the waiting is extra stressful with the covid situation.

NAJ xxx

Not a jockey
Member

Re: October 2020 Chemo Starters

I thought I'd better look up some breath holding techniques and I found this website on an article by Guys and St Thomas' hospital.  It's certainly worth looking at for anyone facing radiotherapy because it has videos about what to expect at the CT planning and radiotherapy appointment itself.  Wish I'd seen it before I went.

www.respire.org.uk

NAJ xxx

linflo58
Member

Re: October 2020 Chemo Starters

Hello everyone 

i havwn’t Posted for a while but read the comments daily. I think we have all done so well. I have started radiotherapy & as I was led there I reflected on all the things our bodies had been put through. First there was the cancer itself, then, in my case, the mastectomy & all that went with that, recovery & daily exercises etc. Then there were all the tests, scans & the gruelling chemotherapy regime. I’ve now had 2 of 15 radiotherapy sessions. On Thursday I had/trastuzumab-and-pertuzumab, which I’ll be having 3 weekly on the chemo ward, also had my first zoledronic acid for my bones, followed by the first radiotherapy. I’ve had the first covid jab today, so if I have any side effects it’s anyone’s guess who the culprit will be! Anyway, I think we should all be so proud of ourselves & our bodies. Good luck to you all on the rest of your journeys

Linda xx

chesterbrownbear
Member

Re: October 2020 Chemo Starters

Dear Not a Jockey

You did make me giggle about they think you will live for at least 10 years, I’ve got 8 😬😬🤣🤣🤣🤣xxx

Carmen Verandah
Member

Re: October 2020 Chemo Starters

Hi everyone 

Congratulations to all of you who have finished your chemo and radiotherapy, and good luck going forward for those of you having a mastectomy. It does seem such a long haul but I try to take it one day at a time, with good days and bad days.

I’ve got 4 more weekly paclitaxal to go now, so I feel the end is in sight at last,  then the 5 days of radiotherapy, and 10 years of  letrozole. I tell myself that this time next year I will be sleeping better and will have hair, eyelashes and eyebrows, and maybe even a nipple tattoo to replace my left nipple, which will be interesting, 

I've found this forum really helpful, so thanks for all your humour and honesty, it’s good to know I’m not alone. I’m also really humbled by those of you going through all this with young children, you are all just amazing.

Waiting for results, waiting for treatment dates, having treatment, and having to do it all alone because of covid has been really hard.

I think Breast Cancer Care is a brilliant charity but I wanted to mention an online course I’m doing for people who have or have had cancer called the HOPE programme, run by MacMillan. It’s about mindfulness, self compassion, improving sleep etc. You can email

ServiceOpsSupport@macmillan.org.uk

to get more information about it.

Well, I’ve painted my fingernails red, the snowdrops and crocuses are coming out and I’ve had my first Pfizer vaccine so it’s not all bad....

 

Big virtual hug to everyone 

Carmen 🌼 x

 

 

 

 

 

 

 

Beaglesmum
Member

Re: October 2020 Chemo Starters

Hi UmLydia, ive had my 6th & last chemo session last week and due for surgery too on the 24th for a wide excision then 5 sessions radiotherapy. I will also be having herceptin for another 6 months. I was triple positive so will need anti hormone treatment longer term. My chemo was brutal, doxetaxel and carboplatin. 
 Bit worried that my surgery is so quickly after the chemo and that I will be strong enough 

Not a jockey
Member

Re: October 2020 Chemo Starters

Hi Chesterbrownbear

I just got home from my radiotherapy planning appointment too!  The 'tattoo' bit was the worst - having the black paint daubed on then being scratched with a needle - yuk.  I need to practice the breath holding thing so it's easier when I actually have radiotherapy.  I've got to wait for an appointment letter which will be another week or so and then it will start two to three weeks after that.  It's all the hanging around I dislike.  It's easier to be positive when you've got dates for things.

UmLydia - when I was going to have my mastectomy a friend who had motor neurone disease said he couldn't imagine what it would be like for a woman to lose a breast.  I told him I should be enough as I am - I'm just getting a bit bolshy I think.  During the day when I wear my prosthesis no-one would know there was a bit of me missing and I've got used to how I look when I get undressed.  I can't be bothered to wear my wig because it feels like hiding.  I do wish my partner was still alive though because it all just feels a bit harder without him.  I hope your op is soon.

York75 - Well done you on finishing radiotherapy.  Must feel a bit like graduation.  I'm going to be on Letrozole for 10 years - I hope that means they think I'll live that long!

Everyone - This experience will soon be at an end - we've all come such a long way already.  I believe that by autumn having no hair, no eyebrows, no eyelashes, feeling horrid and being exhausted will be distant memories.  We'll have our scars but we will have more of an appreciation for the simple joy of being alive and having time to spend with our loved ones and immense gratitude for the NHS that we were able to have the treatment that gives us a fighting chance.

I feel a pancake attack coming on......

 

NAJ xxx

 

chesterbrownbear
Member

Re: October 2020 Chemo Starters

Dear Umlydia, Not a Jockey and all, just had my pre radiotherapy check, ct scan andI had my first 2 tattoos 😀😀.  I can see any hair regrowing yet, I think it’s still coming out, and my eyebrows and eyelashes are still shedding.  I had my first Covid jab on Sunday 🙌🙌, I was so worried that I would get through chemo, only to be caught with Covid 😗. Next week I’ve got a bone density scan, breast clinic appointment and a lovely Covid test.  I think I’ll be living at the hospital, along with 15 sessions of radiotherapy starting 16th.  
Does anyone else still feel tired, I am trying to regain my energy but my leg muscles are really aching. Umlydia, I’m sure your husband still thinks your attractive, I know how you feel, I hate looking at myself in the mirror, what with grey sparse hair, no eyebrows and eyelashes, and my skin is ultra dry now so feel really old.  Anyway that’s it for self pity, good luck to everyone 💕💕💪💪💪

 

Allie_A
Member

Re: October 2020 Chemo Starters

Hi

I am having surgery next too but not been told when yet and some uncertainties with covid.  I meet surgeon again next week having finished chemo this week. 

Was annoyed this week as Dr forgot to give nurses permission to take out picc line but they did it next day when the email came through and was totally painless. 

I think the surgeon will recommend another excision as my margins weren't clear last time but I think I would prefer a  masectomy.  I wouldn't want to go through a third surgery if it's not clear again and all the worry.  I hope the reconstruction can be delayed (or decision on whether to made later) as just want to recover and get on with radiotherapy without any further complications or delays.

UmLydia
Member

Re: October 2020 Chemo Starters

Hi everyone So glad to hear you have finished chemo and got the picc line removed NAJ. Chesterbrownbear great news you had the last nasty docetaxel. I had my last one Friday. They reduced the dose because I have peripheral neuropathy in both hands. A scan confirmed that the tumour has been reduced a lot, the oncologist seemed pleased. 

I saw the surgeon for my mastectomy. I don't qualify for immediate reconstruction. Going to have to do some psychological preparation for waking up amputated and flat. I'm 43 and used to feeling attractive and having a nice figure, even though my boobs are droopy after years of breastfeeding, I have some good bras. It's silly but it really upsets me I won't be able to wear them any more. I need more information on special bras for implants. I have an appointment with a nurse before surgery I hope that will be helpful. Also for swimming. I am tough but not enough to not feel like a freak with only one breast. Luckily my partner is really supportive. 

In a way I will be so glad to just get it over with, it has been hanging over me for months now. And there is always covid threatening to take over and cancel surgery. 

So glad to hear everyone is finishing treatment. Am i the only one having surgery after chemo? I need a year of herceptin and 5 years of hormone therapy. Sometimes I can't imagine feeling normal again! But I know I will bounce back. 

 

York-75
Member

Re: October 2020 Chemo Starters

Great news NAJ- what a relief to have the PICC line out- bet it feels like a big milestone!

And Karen19- you are nearly there, how exciting! Just one last one to go. 👍🏻

For me it is 2 weeks since I finished the 5 session fast forward radiotherapy. My boob has been a bit sore and I have not been able to wear underwired bras again- it was like that for a couple of months after surgery and then it gradually got better. So hopefully I’ll be back to regular bras soon. All in all the radiotherapy experience was fine, possibly I have been a bit more tired in the evening, but overall side effects have been mild for me.

I have also been on Tillomed brand tamoxifen for 4 weeks now and so far so good. Skin is a bit drier, otherwise nothing much to report. I still had a period (light, unproblematic, unlike whilst on chemo!), but I’m not sure if that will continue. No hot flushes, not feeling unwell in any way. Hope it continues!

 

Annoyingly, my eyebrows and eyelashes kept falling out after chemo, they are extremely sparse now. I am now 4 weeks after the end of the last chemo cycle. And hair on my head is slowly returning- I have fluff all over and my scalp looks darker, like a 5 o’clock shadow- so hopefully this means stronger hair is waiting to come through. 
I can’t wait for more eyelashes to return though, my eyes are often watering as they have no protection, and feeling ‘naked’ and sore. Fingers crossed it won’t be long!

But whilst these bits are annoying, I’m so grateful to have had all the treatment. Things could have been so much worse if I hadn’t noticed a slight dip in my left breast 6 months ago! 

Hugs to all, I hope you can manage to stay positive and keep going. I officially started work again this week too, so that feels like another milestone. 😊

Karen19
Member

Re: October 2020 Chemo Starters

That's great news NAJ! As a fellow PICC Line use, I feel your pain.  It has been driving me crazy.  Every dressing has itched and left my skin sore.  I have my last treatment next Wednesday and hoping they take it out then or soon after.  Like you, I have also suffered with oral thrush every single cycle.  It will be lovely for you to have your mouth to return to normal and to sleep without the PICC Line. 

Hope the radiotherapy consultation and vaccine go well. I have both tomorrow morning.

As you say, onwards and upwards - enjoy the further steps towards getting back to normal 😊

x

 

Not a jockey
Member

Re: October 2020 Chemo Starters

I had my Picc line out today - hooray!  I sleep with my arm under my head so it's been a nuisance and I've hated every minute of it.  Obviously it was great when I was in hospital and they pushed all my antibiotics through it but the phlebotomists wouldn't use it to take blood so I still got stuck every day!  Anyway it's gone and it was completely painless getting it out - which was a relief because I'm a bit of a wimp.

When I got home Addenbrookes rang to offer me a cancellation appointment so I now have my radiotherapy planning appointment on Thursday and I've got my vaccination appointment tomorrow.  🙂

All I need now is to lose that horrid metallic taste I get whenever I eat or drink.

Onward and upward.

Hope everyone's treatments are going well.

NAJ xxx

Carmen Verandah
Member

Re: October 2020 Chemo Starters

Hi Fifi

My situation is  a bit different to yours as I was on 4 cycles of 3 weekly EC, followed by 12 weeks of weekly Paclitaxel. I was up to week 7, last Wednesday, when I started to feel very tired, the lining of my nose is very sore and I have some peripheral neuropathy, but not any pain.  I think I had been overdoing things and not resting enough and suddenly it all hit me and I felt very low, so I was given a week off.  However I was well enough to have my covid vaccine yesterday and hope to restart my chemo on Wednesday, as I’m feeling a bit better now. I am counting down the weeks! I think everyone reacts differently and up until now I have been very lucky. My advice is to rest as much as possible.  I hope your surgery goes well and that you can have your reconstruction. Good luck going ahead. I think we have to keep telling ourselves we are going through the most difficult experience in the middle of a global pandemic, and we are amazing! 🌞

FiFi2020
Member

Re: October 2020 Chemo Starters

Hello All, hope everyone is doing ok. I’m from the November starters group so a little behind all of you but wondered whether I could see how those that were on EC followed by Paclitaxel/Carboplatin have coped? 
I’ve had 4 x fortnightly rounds of Acc-EC before Jan and now I’ve done 3 out of 12 weekly rounds of Paclitaxel/Carboplatin. All going to plan my last round will be the last day in March. I met a lady at my hospital last week who is triple negative and BRCA 1 positive (same as me) and she’s about 4 weeks ahead of me. She said she was fine on the PAC/Carb until about week 5 and then became bed bound for days and days due to numbness and pain - has worried me a little as up until then I’ve been thinking/hoping this drug combo is much more tolerable. 
Any insight would be great!! After my chemo finishes I will have April off and then most likely a double mastectomy in May. Would opt for immediate reconstruction but doubt that will be possible due to the current climate and waiting times, but you never know. If any of you do get offered immediate recon, please let me know. 

Lastly, well done everyone for finishing your chemo, must be a great feeling - wishing you all luck for the next bit!

x

 

kazza81
Member

Re: October 2020 Chemo Starters

Hi Naj,

yeh I am so pleased with how my appointments have all flowed.

the picc line removal was ok. The initial pull to take the wire out was ok. I didn’t feel a thing. But when they remove the other little parts that secure the gadget to your arm, I felt a little discomfort. But a she told me to take a couple of deep breaths as she removed them. Once out it was fine. Stung for a couple of hours but now ok. Mark will fade with time. They put a small round player on but it fell off as my skin was so dry under my dressing. But I don’t need one on.

it’s so nice to have it out. Good luck with yours. You will be fine and relieved too I’m sure.

kaz xxx

Not a jockey
Member

Re: October 2020 Chemo Starters

Blimey that was speedy.  I had my last chemo (same regime as you) on Tuesday but they won't take my picc line out until 9th February in case of any infection.  I have had notification that I've been referred for radiotherapy at a different hospital but no appointment yet.  Only on day 4 post-chemo and the dreaded oral thrush has returned.  Hoping that starting the fluconazole early will lessen it's effect. 

There was no bell to ring at my unit but as I've got to go back for three more visits (picc line flush and removal) it would have felt a bit odd anyway.  How was the removal of the picc line? - makes me feel queasy just thinking about it.

So nice to have got chemo over 🙂 at the start of all this it seemed like it would take forever but here we all are either done with it or just about to well.  Well done all of us!

 

NAJ xxx

kazza81
Member

Re: October 2020 Chemo Starters

Hi everyone. 
just a quick update as I am feeling so relieved.

so yesterday was was final chemotherapy of 3 x EC and 3 x doxataxel and I am so happy it’s done with. Was also a great feeling to have my picc line removed afterwards. Just the last of side effects to get through over the next week.

had my first radiotherapy appointment scan too to line me ready to start my treatment next month.

it hasn’t been a nice time but we can all get through this. Good luck to you all, I am sure you will be at your end soon too xx

Karen19
Member

Re: hiRe: October 2020 Chemo Startersi

Hi everyone,

 

So lovely to hear many of us are having or have had their last chemo sessions. Still lots of things to think about, but not worrying about the side effects of chemo must feel good 😘

Having my 5th round and Herceptin as we speak. Last chemo is in 3 weeks time. Don’t know about everyone else, but I am looking forward to the day I can enjoy a soft cheese, pâté and smoked salmon platter washed down with a glass of champagne! 🥳

Thank you for the book recommendations and insight into Radiotherapy and Covid vaccinations. It helps to know what everyone else is experiencing.

 

I’m still hanging on to my thinning eyebrows and eyelashes, but I know there’s a chance I will lose them even at this late stage. Is that everyone else’s experience? On a positive note my hair has been growing back on docetaxel. It is fluffy and non-descript in colour and I resemble a baby chick, but hey it’s still very exciting!!

Take care all and keep looking ahead to the future...x

chesterbrownbear
Member

Re: hiRe: October 2020 Chemo Startersi

Hi Unlydia, NAJ and all my October chemo friends

Hurray, no more chemo. The last docetaxel wasn’t too bad but no bell, just really tired and horrible mouth.  I’ll be happy when I’ve finished those pesky injection, my husband does try hard but they are painful, just 4 to go.  I’ve got an appointment with my oncologist next Tuesday, and I have many questions for him. I’m sure I’ll find out about my radiotherapy but I would like to know when to expect the Covid vaccine and when my immunity will start to improve. I cannot wait for my hair to grow back and my eyelashes to stop pinging off, the only trouble is there are no hair salons or beauty studios open to help.  Good luck everyone and thanks so much for your support.xx

 

Carmen Verandah
Member

Re: hiRe: October 2020 Chemo Startersi

Hi NAJ

 

Sorry to hear about the oral thrush, sounds horrible, hope it clears up soon.

I can’t imagine how I would  have coped home schooling my 3 sons, let alone while being treated for breast cancer, so hats off to you.

Thanks for the book recommendations, I’ve downloaded them both. I try to boycott Amazon as I think Jeff Bezos is rich enough, but I’m a bit of a hypocrite where it comes to my Kindle, I’m afraid.

I’m anxiously awaiting an invite for my vaccine. My mum (91) has had the Pfizer one with no ill effects.

 

Hope everyone else is doing okay. 

Carmen x🌻

 

 

 

 

York-75
Member

Re: hiRe: October 2020 Chemo Startersi

Hi NAJ,

congrats on the last one!!

hope you got to ring the bell. I’m sorry it is rough. But nearly done now!!

BTW re radiotherapy, mine was the left side and I could still have the 5 session treatment. I did the breath hold technique to help with it .

I didn’t think it was tricky- and they give you options depending on how long you can manage to hold it.

So I think you can still ask about it. I asked if it was suitable for me- not sure if he would have recommended it otherwise?

Not a jockey
Member

Re: hiRe: October 2020 Chemo Startersi

Hi Karen,

Sounds like you're on the same regime as me.  3 Fec followed by 3 Docetaxel - I have my last chemo today.  The oral thrush is appalling.  I've had it so badly that this time I am starting the fluconazole on day 3 and taking it for 14 days.  I've noticed the fatigue is worse every time which is just rubbish with a special needs teenager and on line lessons.  I used to get paid for this much teaching!

I have been told I will have 15 sessions of radiotherapy starting no earlier than the 9th February - I think my oncologist said that's because it's my left side that is affected and the heart is on the left side.  I had a mastectomy in August and of course my tumour was grade 3.  It grew noticeably between my first and second biopsies.

I read a good book called 'I've Got Cancer What's Your Excuse?' by Ann Gildea this week and also the book The Complete Guide to Breast Cancer by Prof Trisha Greenhalgh and Dr Liz O'Riordan. The Ann Gildea book made me laugh out loud at times and there were a few things in there that I found really helpful.  The 'Guide' was very factual and written by two doctors who have both been through breast cancer.

I had to have a picc line inserted after the Fec and I'll be so glad to have it removed.  I think they might do that in a couple of weeks. 

York - I was offered a covid vaccine as a foster carer but they would only offer me the 20th or 21st of this month and since I've got chemo tomorrow that was a no go!  I asked if my daughter could have it in my place as she's a teacher and a respite carer for James but they said no. 🙁 

Um Lydia - great news.

Good luck to everyone.

NAJ XXX

York-75
Member

Re: hiRe: October 2020 Chemo Startersi

Hi there Karen19,

yes I am still on Herceptin. I’m not sure exactly who will be eligible for the 5 day radiotherapy, I think it has to do with how advanced the cancer was, so what stage, rather than grade. My was grade 3, but an early stage, so the 5 sessions was fine for me. 👍🏻

I had the covid vaccine -1st dose, 7 days ago. No side effects for me apart from a bit of a sore arm for 2 days. 
Apparently after 10 days your body has developed a good immune response, so roll on Thursday! 🥳

Karen19
Member

Re: hiRe: October 2020 Chemo Startersi

Hi York-75,

That’s so helpful to know and thank you for the advice. Knowing the end is in sight helps me tolerate the side effects. Each time I have a side effect I tell myself “I only need to feel like this 2 more times”! 

The timescales you mentioned were discussed with me back in August, but that was before I discovered I was HER2 positive and wondered whether that might change things. I recall that we are both having Herceptin injections so it’s good to know that I am still likely to be able to have 5 radiotherapy treatments. 


How did you get on with the Covid vaccine? I understand that we should all hear something this week....

x

York-75
Member

Re: hiRe: October 2020 Chemo Startersi

Hi Karen19,

Im sorry you are suffering so many side effects. Not too much longer to go!

 

I have started radiotherapy and I’m having the ‘fast forward’ type, just 5 sessions of a higher dose- the alternative would have been a lower dose for 15 sessions.

so far I have found in sleepy in the evening, but not really suffering any discomfort. Having had 3 sessions so far, my skin is not red yet, but I have heard it can come afterwards. I slather on aveeno cream after radiotherapy.

Generally my skin feels a little dry abd itchy, but that could be the tamoxifen. Nothing much else to report so far, so much preferable to chemo!

 

UmLydia, hand in there, I’m so pleased to hear the chemo has been working so effectively for you, despite the suffering that is great news! Xx

Karen19
Member

Re: hiRe: October 2020 Chemo Startersi

Hi everyone,

UmLydia, that’s great news about your tumour. It makes all the chemo suffering worthwhile! I had a lumpectomy at the end of August before starting chemo at the end of October. 

I had three FEC infusions prior to Docetaxel and have two more Docetaxel to go before I finish the course. The next one is on Wednesday.

I found Docetaxel made me more tired and my side effects lasted longer than FEC, but was so relieved not to have nausea and sickness! I had oral thrush once again and Docetaxel has also affected my stomach, making it bloated and unsettled for much of the time. I have also had nosebleeds and swollen eyelids!

Counting down the days til the end of Chemo and just waiting for my radiotherapy to be finalised. Does anyone know how long the Radiotherapy will last for or are we all different?

Hope everyone else is keeping well...x

UmLydia
Member

Re: hiRe: October 2020 Chemo Startersi

Hello everyone. Have most of you finished chemo? I had my third dose of docetaxel (chemo no. 5) last week. It wasn't as bad as usual although the tiredness is definitely getting worse. Spending more and more time in bed. My husband is around a lot because he is banned from working at the moment, due to restrictions. I am lucky at my hospital they offer sports classes, despite Covid restrictions. On week 2 and 3 it does me so much good. Get stronger. 

Good news I saw my oncologist and she felt the tumour and says she can't feel it at all. 

One more docetaxel before mastectomy. Starting to freak out big time about that. I don't classify for immediate breast reconstruction. 

Anybody else having surgery after chemo??? 

Chester brown bear hope your last chemo went OK!! So glad to hear you were feeling better last week. 

Hope you are all doing OK. 

UmLydia

chesterbrownbear
Member

Re: hiRe: October 2020 Chemo Startersi

Dear wonderful October Ladies

Thank you so much for your support and encouragement, what would I have done without you? Just to let you know I feel a lot better now after the blood transfusion but it did take 10 days.  York-75 it is so good to hear your experiences with both tamoxifen and getting ready for radiotherapy. I am a bit nervous about taking tamoxifen due to some of the side effects reported, so I am interested how you get on over the next few weeks.

Fantastic news Mrs Quincy, may it carry on 💕💕.

I’ve got my last docetaxel chemo next Thursday, and after that I’ll find out about radiotherapy.  Love to you all 💕💕💕💕

linflo58
Member

Re: hiRe: October 2020 Chemo Startersi

Hello everyone

i havn’t been on here for a while, but have kept up to date with the comments. Think I’ve been ‘quite lucky’ with the side effects compared ro some. I have my third & final Abraxane next week, which is in place of Docetexal. I have this with the Herceptin drugs. My legs have ached & I have a constant runny nose, which is so annoying, but in the big scheme of things......

it just confuses me the different treatments that we have. My tumour was 65mm & 4 lymph nodes infected. I had a mastectomy straight away, then 3 EC, followed by the Abraxane. I have to have Herceptin for 12 months every 3 weeks. I’m also having 15 sessions of radiotherapy. Others have chemo to shrink the tumour first. I wonder how the decisions are made. 

I must admit I’m ready for the treatment to end. I’m an upbeat, positive person but it does eventually wear you down. I know life isn’t ‘normal’ anyway at the moment, so we are not missing out on much. I still count my blessings that we can be treated & hopefully get rid of this terrible disease.

Love to all.

Linda xxxx

UmLydia
Member

Re: hiRe: October 2020 Chemo Startersi

That's great news Mrs Mcquincey!!. Very glad your chemo is working. 

York 75 that is interesting to hear about your radiotherapy. Keep us up to date. Mine is still far away but helps to hear your experiences. Luckily in France children still going to school, would have been very challenging to home school my three, bright 11 and 9 year old and energetic 5 year old while on docetaxel and looming mastectomy. It might still happen of course. 

I had third docetaxel yesterday. The oncologist felt the previously 7 cm tumour. I had the impression it had almost disappeared but he said he could still feel it and it is still about 5 cm. I felt upset but it HAS shrunk because my breast was deformed before and looks normal now. It is still deeper inside the breast. I see my regular oncologist Tuesday- see what she says. They sent a nice doctor lady to chat about how I am coping with side effects so that made me feel better. 

Hugs to everyone! It's freezing here in France glad I don't to go out driving on icy roads for work. 

 

York-75
Member

Re: hiRe: October 2020 Chemo Startersi

Thank you MrsQuincy, fingers crossed!

I was so scared of tamoxifen, having read so many bad experiences. It is very early of course, but it is a relief to not have experienced anything much straight away.

I thought I’d report back a bit, as it is the kind of thing that is part of the plan for many of us.

I am also getting the first Pfizer covid jab on Sunday, so I’ll let you know how that goes. Xx

mrsquincey
Member

Re: hiRe: October 2020 Chemo Startersi

Wow look at you York. Well done. I have heard some people really struggle with holding their breath I don't know if it's more of a anxiety thing. Hope it all goes smoothly. And I hope the tamoxifen is easy for you and that it just means you won't have many side effects x 

York-75
Member

Re: hiRe: October 2020 Chemo Startersi

That’s great news Mrs Quincy! 
makes it worthwhile to see such an improvement. 🤞🏻

Hugs to all those finding it hard, having complications and delays- hang in there. X

I have just got my tamoxifen prescription, had 2 tablets so far. Nothing much so far in terms of side effects, might attribute a touch of heartburn to it, being extra drowsy in the night after I have taken a tablet. This is not a bad thing, possibly stops me being woken up as much by the snoring husband! 👍🏻👍🏻 Early days of course. I was prescribed Tillomed- if I  keep having hardly any side effects I’ll ask the gp to specify the brand to ensure I can have the same each time.

I had my ‘marking up’ appointment for radiotherapy between Christmas and new year. I now have my first tattoos! 😆

3 tiny pinpricks of blue, they are hardly noticeable. I need to do the breath hold technique as my left side is affected. It was easy, should not be a problem. You need to be able to hold your breath for 20-25 seconds 3 times. I will get the ‘fast forward’ radiotherapy, so should just need 5 sessions. Which is good! I start on Wednesday, abd hope to start my phased return to work after that- along with the ‘joys’ of home schooling.

All teachers deserve a pay rise...

 

mrsquincey
Member

Re: hiRe: October 2020 Chemo Startersi

Heya lovely ones. Just popped on as realised I hadn't for ages. 

 

Happy New year ladies and let's hope 2021 is kinder to us all.

I am now half way through chemo. Finished 4 EC chemos and now on to docetaxel wither herceptin and prejta. I do hope it is kind to me. 

 

I had a mid way mri done after my 3rd EC chemo and have just got my results today. 

My lump was at 35mm is now shrunk to 12mm. So  65% gone. My dcis has all shrunk also.

 

I'm pretty happy with that x 

UmLydia
Member

Re: hiRe: October 2020 Chemo Startersi

Hello ChesterBrownBear

Hope you are feeling better, out of hospital. Docetaxel is tough. I still have two more sessions left. 

Carmen Verandah ha ha so funny our social highlight of the month is going to get poisoned. And I'm so excited to see my surgeon about mastectomy at the end of the month. He's really lovely i hope to get it over with soon and stop worrying they will cancel my op. I know its not likely but hard not to think it sometimes. 

At least we are not missing anything while treatment ! 

Big hugs to Naj hope you ok. 

Happy new year everyone

 

Carmen Verandah
Member

Re: hiRe: October 2020 Chemo Startersi

Hi ChesterBrownBear

Sorry to hear about your ordeal, sounds like you have really been through it and I hope you are feeling a bit better. It does make everything so much harder not being able to have anyone with you in hospital.

I’ve got 3 eyelashes on my right eye and none on my left, and very patchy eyebrows, not the best look 🙀

Great that you’ll be done with chemo next week 👍! I’ve got 7 more weekly doses, but going to be poisoned once a week is one of the few activities open to me in lockdown, and the staff are really good.

It will be good to hear how the radiotherapy goes, as I’ve got that coming up in March.

 

Onwards and upwards! Keep strong 🎈🌞

Shi
Community Champion
Community Champion

Re: hiRe: October 2020 Chemo Startersi

💪💪💪💪👭👭👭chesterbrowbear ❤️❤️We’ve got your Kylie gold hot pants and are holding on tight to you 👭👭💪💪💪💕💕Shi xx

chesterbrownbear
Member

Re: hiRe: October 2020 Chemo Startersi

Hiya All you lovely people. I’ve not faired to well with Docetaxel, the excruciating pain I had in my back, the feeling my nails are going to ping off, passing out and the extreme exhaustion.  I had to have a blood transfusion on Tuesday, where I nearly passed out again. It’s such a shame you have to be on your own in hospital as that makes it so much worse.
Im lucky I must have about 10 eyelashes 😀, but yes my eyes are a bit gunky too. My last chemo is 14th January, hurray the end is in sight, rock on radiotherapy ( if it’s not cancelled because of COVID). Stay strong 💪💪💕💕

 

Not a jockey
Member

Re: hiRe: October 2020 Chemo Startersi

Hi UmLydia,

Chemo went ahead this Tuesday.  They reduced my dose of Docetaxel but the oral thrush has kicked in even earlier which is fairly miserable.  I started the fluconazole today (day 5) but day 3 might have been better and I have 10 days worth to take.  Like you I've now lost almost all of my eyelashes.  I was only achy for a day or so and thankfully my nails look fine though I was a tad concerned for a short while after my first Docetaxel.  I do feel way more fatigued as time goes on so I wasn't thrilled at 6.50am this morning when the smoke alarm decided it's battery was running out and I had to trek to the basement for the ladder then up to the third floor to remove it.  No peace for the wicked.

Sugapiesan - No nausea of any kind with Docetaxel so that has to be a bonus.  I can rest for the tiredness, the achy joints didn't last long, I was expecting my eyelashes to fall out anyway and my worst thing has been the oral thrush.  It's different for everyone!

Happy New Year to everyone

NAJ

UmLydia
Member

Re: hiRe: October 2020 Chemo Startersi

Hello Sugapiesan

Docetaxel makes me feel achy, pain in joints and muscles, very tired and i got thrush around my bum which was a bit of a shock. Also i have lost my eye lashes and have a gungy eye (blocked tear ducts). If you scroll down there are a few posts describing the effects. 

But it is different for everyone. The doctors seemed to think it would give me diarrhea but i haven't had that at all yet. 

The good news is no nausea! 

Good luck hope it goes well. 

xxxx

Umlydia

UmLydia
Member

Re: hiRe: October 2020 Chemo Startersi

Hello Naj, how are you doing? Did you go forward with next chemo treatment? Maybe they are decreasing the dose to protect you from sepsis happening again hope it goes better this time. 

Docetaxel affects the nerves in hand and feet and the nails. Hope your thumb nails are not falling off.

My thrush cleared up with the cream, i get nasty taste in my mouth as well. I have lost most of my eyelashes and have a grungy eye, i get that a lot. I definitely feel much less energetic even in the second week after treatment. 

So sorry you had to self isolate over the Christmas period. 

Sending big hugs. 

Umlydia

Sugapiesan
Member

Re: hiRe: October 2020 Chemo Startersi

Hi Jo,

I’ve hopped over from November chemo starters to get some pre warning on what is to come next for me. I’ve just had the third and final dose of EC and feeling pretty low and head very fuzzy. I wanted to know what Dotaxel will be like as I have three rounds of that next, again with three weeks in between, any insights you have would be helpful for me to mentally prepare. Hope I have the name of the drug correct! 

Not a jockey
Member

Re: hiRe: October 2020 Chemo Startersi

Hi everyone and Merry Christmas for tomorrow,

My chemo was cancelled due to me having contact with a confirmed covid patient.  I do feel a bit cheesed off because my test was negative and I was told I didn't need to self-isolate and chemo would go ahead - this from the ward consultant.  On Monday my oncologist rang me to discuss how the first docetaxel had gone and she said I should have been told to self-isolate for 14 days - great - I'd been home for a week by then being careful but not to the standard demanded by self-isolation.  I'm slightly concerned that my picc line won't get flushed through for 15 days after I'd been told it should be done weekly.

Umlydia - I had terrible oral thrush this time - the worst I've ever had it.  I've been told that next round the fluconazole will start on day 5 rather than day 8.  I was given Nystatin at the hospital.  It has gone now thank goodness but my taste has been badly affected and almost everything tastes awful.  I also had aches and pains that weren't too bad but my thumbnails hurt and one of my toenails is really painful - odd.  They are going to reduce my dose of docetaxel.  The problem is that we don't know whether the complete exhaustion was due to the drug or to the sepsis.  

I hope that everyone has the best Christmas possible.  

NAJ xx

 

 

Karen19
Member

Re: hiRe: October 2020 Chemo Startersi

Hi Umlydia,

 

So sorry to hear about your problem. It sounds awful. Like you, I get oral thrush after every treatment and have had to take a course of Fluconazole each time. I wonder whether this could also be used for your problem, but your rapid response team will know the answer. Your symptoms also sound like your condition may be piles which can arise if you have had constipation?

I really hope that you can get something to treat it ASAP and that you are able to enjoy tomorrow.

Merry Christmas and take lots of care x