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October 2020 Chemo Starters

UmLydia
Member

Re: hiRe: October 2020 Chemo Startersi

Hi everyone

I had to call the unit yesterday as I had fever 38 degrees plus I was finding it an effort to walk upstairs. They said to have a blood test and check the fever if it went up more go to emergency hospital. Luckily it went down. Had a blood test this morning but still so tired I found it a struggle to walk down the road to the school. Everyone says chemo causes tiredness and its normal-but this seems abnormal and its not getting better... I have an appointment with my GP for the results this afternoon. I received the results already on my phone I have very high white blood cell count.  Fingers crossed nothing that will interfere with treatment. 

Chesterbrownbear i felt absolutely fine for the first couple of days. Hope you get everything ready before the tiredness kicks in. 

NAJ i have been taking paracetamol. When I phoned yesterday they didn't seem at all concerned about the pain. Unsympathetic french ! I'm so glad I chose to join a UK support group. You are all so lovely. 

 

York-75
Member

Re: hiRe: October 2020 Chemo Startersi

Oh UmLydia, this sounds tough! 
It is so hard when you are poorly and you have the added guilt of not being able to do much with the children.

Sending huge big hugs to you, and good luck to everyone starting a new part of their chemo regime. Xx

chesterbrownbear
Member

Re: hiRe: October 2020 Chemo Startersi

Dear UmLydia

you poor thing, things must be bad. My nurse called yesterday as I start docetaxel tomorrow, she said if I get joint pains, call the unit. I hope you have contacted them just to check all’s ok and they may be able to change the way they give it next time. This as given me a slap to do as much as possible today as I don’t know what effect I will have.

good luck to you all, 💕💕💪💪💪

Not a jockey
Member

Re: hiRe: October 2020 Chemo Startersi

Hi UmLydia,

What have you been taking to help with the pain?  My oncology nurse said it can feel like flu - is that your experience?

I wasn't looking forward to Thursday anyway 😟.  I wonder if the combination of docetaxel and herceptin has made it worse for you.  I'll just be on docetaxel.

NAJ xxx

UmLydia
Member

Re: hiRe: October 2020 Chemo Startersi

Sounds like you are doing great Karen! Good luck with your final FEC. 

Day six of docetaxel and I am walking up the stairs like an old granny (I'm 43 and usually dynamic). Had intense lower back pain for two days, I looked it up and maybe it was the drugs for the blood cells. I have had to accept bed rest and am even avoiding dragging myself out to fetch the kids if I can get out of it. Hey ho. Accepting this new pathetic me was hard. I was trying to fight it and feeling miserable.  Pain seems to be wearing off today look forward to feeling more normal. 

I don't want to scare those of you starting docetaxel on Thursday,  but for me it is much worse than EC. However everyone is different. 

Hugs to everyone

 

Karen19
Member

Re: hiRe: October 2020 Chemo Startersi

Hi everyone,

I’ve not posted for a while, it amazes me how quickly the time is going and consequently our treatment programmes. 
I’m due my final FEC treatment next Tuesday followed by 3 x Docetaxel and Herceptin starting on the 29th.

It appears that we are all still affected in so many different ways, but are staying strong and making the most of those days when we feel more like ourselves. 
I also felt incredibly emotional after my 2nd cycle and had chemo brain where I felt I wasn’t in control. Such a relief when that passed 😂

I have been walking a lot, still watching Christmas movies and some great dramas on Netflix and Sky. The highlight of my weekend was putting up the Christmas tree, eating curry, chocolate and a couple of glasses of Prosecco!

Onwards and upwards! This will soon be over for us all and I’m excited for what the future holds. Stay strong everyone x

 

chesterbrownbear
Member

Re: hiRe: October 2020 Chemo Startersi

Hi UmLydia

Look after yourself, and rest as much as possible. I’m rushing round wrapping presents and writing cards, got to try and put the decorations up tomorrow as I’ve got my first docetaxel on Thursday 😬. I must admit I’m a bit scared but what’s the choice.

stay strong everyone 💪💪xx

 

 

UmLydia
Member

Re: hiRe: October 2020 Chemo Startersi

NAJ you sound like an amazing foster mother thank you for sharing your feelings. Your son is very lucky. 

I had steroids the evening before, the morning and evening of the chemo and the day after. Nobody told me i would feel like s*** with exhaustion and weird aches and jabbing pains. I think the steriods made me feel fine for the beginning and then when the real side effects kicked in I felt really vulnerable- I wasn't expecting them at all. I did cry in front of my 5 year old (she spends most of her time stuck next to me chatting or drawing) and usually I am very positive and strong and explain what is happening.  But I told her mummies are sad sometimes or scared. 

I don't take ibuprofen I tried paracetamol but it didn't make much difference. Maybe I should try ibuprofen. The effects are not too bad today. 

Your allotment sounds amazing!! I love gardening too. 

A big hug! 

 

 

Not a jockey
Member

Re: hiRe: October 2020 Chemo Startersi

Hi UmLydia,

I have my first Docetaxel on Thursday this week.  I've been told that it will probably make me feel like I have flu so what you are describing is pretty much what I'm expecting.  Were you given steroids to take the day before, the day of chemo and the day after?  I'm stocking up on ibuprofen.

It's hard with kids - my foster child is 13 and incredibly anxious about everything due to his background.    I make sure I'm positive in front of him and keep things as normal as possible.  So far he's taken everything in his stride but that's probably because I spent a lot of time talking about what to expect and how my appearance would change and I've answered his questions as honestly as possible.  I know that he worries about what will happen to him if I die and he's dropped hints to my daughter and my best friend about maybe living with them!  Forward planning is not usually his strong point.

It's ironic that he was removed from his family so that he would have a safe, loving and stable home and in four years of living with me I contracted necrotising fasciitis which nearly killed me and took months to recover from, his foster dad died of cancer two years ago and now here I am with breast cancer.  I do feel like I've had more than my share of bad luck.

I'm taking the attitude that I'm not dead yet and I plan to be here for a long time.  So far as is possible I'm still doing things I enjoy - gardening, cooking and reading - and I'm looking forward to next year when treatment will be over and we can travel and go camping again - though he's grown so tall he might not fit into the campervan!  When he tried his PE kit on in September prior to going back to school it looked like it had been sprayed on.

Enjoy those Christmas films.

 

NAJ xx

UmLydia
Member

Re: hiRe: October 2020 Chemo Startersi

Hello

Had first docetaxel/ herceptin on Wednesday.  

It didn't make me nauseous what a relief. But does make me feel much more drained, have aches and pains all over and not much energy left for my children. Not like me at all. I was crying in bed yesterday because it just hit me how unfair it is for my 5 year old to have her mum in this state. Staying in bed doesn't make me feel better though and when i force myself out for a walk i feel better. And the weather has been sunny so that is a blessing. 

Is anyone else going to start docetaxel ? 

York 75 glad you are feeling ok.... I hope you sort out your work organisation. I hope they are kind and considerate to you. 

I have had to give in to fatigue and start watching films on netflix... you  inspired me with your xmas films. The kids think its great. Not up for any xmas shopping. Will wait and see hopefully will feel better in a few days. 

 

 

 

York-75
Member

Re: hiRe: October 2020 Chemo Startersi

How is everyone getting on?

I have had my 3rd round and feeling a bit flu-ey and tired, dizzy. But I know it will start to improve shortly.

Hope you are all hanging in there and getting those treatments ticked off! Xx

York-75
Member

Re: hiRe: October 2020 Chemo Startersi

Thank you UmLydia, all was good with bloods so I’m going ahead with Abraxane and Herceptin this pm. Herceptin has not caused me a problem, I hope the Docetaxel is kinder to you than the EC!

I don’t know yet which of the vaccines we will be offered. Depends on availability and price I guess- aim must be to get as many people vaccinated as possible as soon as possible, rather than waiting for the ‘best’ one.

My shielding letter basically says to work from home, follow rules very carefully, don’t go to shops or pharmacies, get someone else to go for you.

Id have liked to be able to do a bit of Christmas shopping, but I think I need to accept that online shopping is what I can do.  The only thing I do, other than going for walks when I feel well, is the school run. As soon after chemo as I can, I start going at least the morning one. Given it is outside it is not forbidden as such, and I wear a mask when near others. It helps to make things feel normal.

I am off work, but found out yesterday that our core systems will be changing, so I will have to find a way to be involved in that, if I want to know what’s going on when I return. Not ideal timing, not works fault- the result of one company buying another. Hey ho, I’ll try to get my head around it!

UmLydia
Member

Re: hiRe: October 2020 Chemo Startersi

Thanks York 75 yes it is true what you saw. Usually everyone I know thinks I am really strong and positive but we are actually fragile and also the covid situation makes it worse. We are all doing great and this group is so helpful. 

Do you know which covid vaccine is ready for you in the NHS? 

I started Heceptin today but i don't think it has many side effects. Docetaxel as well for the first time. So glad we finished EC-shudder. 

In France they are going to open the shops again (since October just essential food etc and they even banned toys/books etc in supermarkets) so I am looking forward to going xmas shopping for my kids when i feel ok again after this new chemo. We still only allowed out one hour a day for a walk 1 km away from our house but since i love walking so much and it makes me feel so much better i enjoy it anyway. 

We don't get letters telling us we are vulnerable what does yours say in the UK? 

Hope they call you soon with results. 

UmLydia
Member

Re: hiRe: October 2020 Chemo Startersi

Hi Shi and Chesterbrownbear, thanks for your messages. When i came in for chemo this morning luckily my oncologist came in to check on me and I told her how I had felt bad after the consultation yesterday. She took the time to sit down and explain things better. It is so so important and it makes such a difference.  I feel I can handle lots of things, the chemo, the future amputation, the loss of hair, the lockdown, the ridiculous compulsory face masks we have to wear in France in all public spaces ( even my kids all day at school-) etc etc but when I felt kind of "let down" by the doctors it was just too much. So glad she was here this morning as really it is the only person in the world who can explain exactly what is happening and the decisions they are making. At the beginning when i was first diagnosed the first doctor the I saw was surgeon who will operate me later and who was very reassuring, warm and patient but I don't see him unfortunately during the chemo. 

During the docetaxel they sugested cold gloves for hands and feet to protect the nails. Freezing!!! I had to get my fingers out and wriggle them a bit because i was worried i would get frost bite! The nurse was lovely today though and much as i didn't mind my hair falling out i really want to protect my nails. So was grateful for that. 

Apparently Docetaxel doesn't make us nauseous so that is a big plus. I was actually dreading another EC. Got out of that. 

 

York-75
Member

Re: hiRe: October 2020 Chemo Startersi

Oh UmLydia, I’m so sorry you had to go through that rather clumsy handling of your change in treatment plan, I’d be upset too.

Im sure that they were just thinking in a ‘task focused’ way and forgot how it would make you feel. It is such a vulnerable time, and we are all hanging on to our calm on positivity by the skin of our teeth, so I’m not surprised this has left you rattled.

Shi gives good advice, I’m sure if you speak to your BC nurse they will be more mindful next time they talk to you.

I am going in tomorrow for Abraxane 3 of 4 and Herceptin 3 of 18. Usually they call me today to check all is ok, but nothing so far today. I hope it us an oversight and not a sign that anything was wrong with my bloods.

I work for the NHS and our trust could be receiving covid vaccines for staff as early as W/c 14th December. I will be due my last Abraxane that week- I will ask tomorrow if I will be allowed to have the covid vaccine.

I will let you all know what the answer is!

chesterbrownbear
Member

Re: hiRe: October 2020 Chemo Startersi

Dear UmLydia

you poor thing, you must have felt terrible. Sometimes everything is just too much, and I think it’s extra hard for us with the worry or coronavirus. You will regain your strength, and get through this 💪💪💪💕💕💕.

im having my first docetaxel next Thursday so I’m also concerned about the side effects, so fingers crossed we will all get through this

look after yourself and stay strong xxx

Shi
Community Champion
Community Champion

Re: hiRe: October 2020 Chemo Startersi

Umlydia ❤️ Sorry your team have not been more gentle when explaining the change to your treatments ❤️ I think sometimes teams just go into right next treatments mode and forget that everything is new to you and when changes happen to original treatment plan it is a lot to take in and process again, do speak to your assigned breast nurse and tell them how it’s made you feel, they will hopefully be more gentle at appointments going forward ❤️ Keep focused 💪💪 step by step you will get through 💕💕Shi xx

UmLydia
Member

Re: hiRe: October 2020 Chemo Startersi

Hello thanks a lot for the feedback about lymph node surgery. Sounds reassuring. Will stop worrying about that. 

I had a scan after two EC's but it is not reducing the tumour so they are going to skip the last EC and go directly on to docetaxel and the HER positive drug. Have session tomorrow so will see what new side effects I develop and how i react. 

Its obviously very disappointing that the tumour hasn't reduced but the doctors show no kind of emotion and don't seem too bothered. Not much empathy. 

The oncologist I saw today also said  they think the cancer has spread to the skin to they won't be able to reconstruct the breast. What with the oil spread metaphor to illustrate the invasive nature of the cancer it is getting a bit much I was nearly crying when I left the consultation. Even though i knew i would have a mastectomy apparently any reconstruction will be in a year or more. I feel that they are not being fantastic in communication skills at the moment. I do trust that they know what they are doing but wish they could be a bit more human sometimes.

Had anyone else started docetaxel? 

Hugs to everyone you are all doing great. 

 

 

 

Not a jockey
Member

Re: hiRe: October 2020 Chemo Startersi

HI Linflo,

I'm on track for 3rd and 24th December too.  My unit say the only day they won't be open is Christmas Day itself.  My daughter says she's happy to cook Christmas dinner but it will be bangers and mash - my foster child is delighted with that option! 

I've opted for Click-n-collect for my shopping.  I'm trying to be good and stay in as much as possible but sometimes there is no option - my dad is 88 and not too well so I do a fair bit of running around after him. 

Roll on spring....

NAJ xxx

linflo58
Member

Re: hiRe: October 2020 Chemo Startersi

Hello everyone

i got an email and a letter telling me I was vulnerable! I’m desperate to go shopping, I love the Christmas atmosphere but have been sticking to the rules. I too can’t believe how normal I feel after a bad first week. Managing to go for local walks. I saw the offer of priority shopping slots but it asked if you had anyone to shop for you. I have 2 daughters who can do it for me, so felt bad registering, was tempted though. My next session is 3rd December then 24th, I wonder if they will operate as normal on Christmas Eve? I normally have everyone round for Christmas dinner, but think I will defer this year. There will be plenty of time to celebrate when Covid & cancer have finally gone.

Love to everyone, stay strong.

Linda x

 

mrsquincey
Member

Re: October 2020 Chemo Starters

No letter for me either. I did have my gp call and she said oh I'm sure you will get one nearly Xmas 🥴🥴

It's so bizzarre to think how normal I feel after a bad week after chemo. 

 

 

 

 

chesterbrownbear
Member

Re: hiRe: October 2020 Chemo Startersi

Hi Jo22

no letter for me so maybe I’m not vulnerable 🤷‍♀️, the gap didn’t even offer me a flu jab but luckily I used to work at a pharmacy, and I asked them to do it just before my first session. Yes you are so right a good 11 day now before the next session, time to write Christmas cards, wrap pressies, put Xmas decorations and may even make a cake.

Make the most of good day, and all stay strong and safe xx💕💕💪💪

 

Not a jockey
Member

Re: hiRe: October 2020 Chemo Startersi

Hi Jo22

Yes, I've had my letter - I also got a guaranteed slot at Tesco for a delivery on December 23rd!  There has to be at least one plus point to this.  

My GP told me to take Omeprazole every day until I finish chemo.

Hope everyone is as well as they can be.  We're all a step further towards recovery and normality.

NAJ xxx

 

York-75
Member

Re: hiRe: October 2020 Chemo Startersi

Hi Jo22, 

I have had a letter to say that I’m clinically vulnerable. 
Mostly I’m being very good and not goo g to shops or pharmacies or anything, but I do the school run wearing a mask- just want some sort of normality for my little girl. I will admit to one sneaky trip to the post office to send my brothers 50th gift, drenching myself in hand sanatiser..

Jo22
Member

Re: hiRe: October 2020 Chemo Startersi

Hi UMLydia and all,

Sorry just catching up after a nasty 3rd round, horrible sickness the day after but through it today - phew!

UmLydia -There are certainly lots of options for the reconstruction and not all on offer at all the hospitals. I agree that getting into a bikini and feeling somewhat normal is important for me too.

NAJ - Thanks for replying about the Omeprazole they gave me some on Thursday. When did you start taking it and did you take with with the metoclopramide and/ or Ondansetron? Or just when the acid reflux started? Thanks for the nativity link, will be nice to get christmassy I'm not feeling it at all yet.

CBB - Good luck if you do brave the shave, I agree the wig may be easier to wear without any hair although thanks York75 for the tip on the sock thing!

York75- Glad the itchy scalp is calming down, one less thing to be dealing with x

Linflo - I feel bad after round 3 as well but hopefully after day 3 it seems to subside and then just acid reflux. The Crown is well worth a watch!!

Mrs Q - Yes week 1 bad then weeks 2 &3 are good although like you I had an awfully crappy mood after round2. Not sure if that is just covid related though as the lockdown makes it so hard to be anywhere near normal.

Has everyone had their clinically extremely vulnerable letter from the NHS? 

Take care and happy weekend all. 

Jo xx 

 

 

 

York-75
Member

Re: hiRe: October 2020 Chemo Startersi

Hi UmLydia, 

I just wanted to add that I had 4 lymph nodes out along with a breast lump at the end of august, and I have full movement (I can feel a difference when I do it, it’s feels tighter on the surgery side, but it doesn’t hurt to make the same movement) and only a small patch of numbness in my armpit.

So maybe how soon the feeling comes back depends on how many nodes they need to remove, and how they do the incision?

chesterbrownbear
Member

Re: hiRe: October 2020 Chemo Startersi

Hi Umlydia

i had a lumpectomy and removal of lump nodes under my right armpit, this was back in July.  Yes I was really concerned after the op as I couldn’t do much with my right arm. I am a really active person, with gardening, cycling, dog walking and aerobics but I was determined that I wouldn’t let the op get me down. I made sure I kept up with the recommended exercises, which were hard to start, but to date I have the same movement in that arm as previously, all be it still numb in my armpit. I know you have to me much more careful about scratches, infections, sunburn etc but now a days they seem to think we can exercise as normal.

Good luck which your future treatments, I’ve got session 4 of FEC-T chemo in 2 weeks 😬 💪💪

UmLydia
Member

Re: hiRe: October 2020 Chemo Startersi

Hi Jo22 

Thanks for your reply that is really helpful as I haven't had a consultation about reconstruction options yet. I am quite thin and love swimming and being active so I suppose implants will be the best option for me too. Unless they can just use bum fat gots lots of that ha ha. I don't care much what the new breast looks or feels like, I just want to be able to wear a bikini without feeling like a freak and go back to not having to think about my breasts.  I'm more worried about the lymph node surgery  as I think it could affect my clarinet playing. But I trust the doctors and i will just do the exercises then and stay positive. Its true the only thing that matters is getting better and seeing my kids grow up. 

I had a scan yesterday and they couldn't see a reduction in the 7cm tumour.  But the doctor said since it is not a lump but more like a petrol spill (!!!!) then they can't see if the microcalcifications are still cancerous. And that after two sessions is still early to tell. Still nice that they did the scan to check and I'm sure they know what they are doing. 

Hope cycle 3 is not bad. It is like a roller coaster and a very strange experience and its great to be able to share it all together. Lots of hugs to everyone. 

 

York-75
Member

Re: hiRe: October 2020 Chemo Startersi

Hi Linda,

im sorry you are feeling rough this time. 😢

I have Trastizumab ( Herceptin) in injection form 3 weekly, and I don’t have any side affects from that bit.. So hopefully it won’t be too bad for you. 🤞🏻

The first time I had it I had it, I had it on its own, and had to wait in the unit 6 hours to see if I reacted to it. Nothing. I still felt totally normal the next day. 👍🏻

mrsquincey
Member

Re: hiRe: October 2020 Chemo Startersi

Hey all... I'm guessing we are all well in the midst of chemo etc now. I have deffo found I have a crappy 1st week with ec and then the next 2 weeks I'm more or less myself. 

 

Half way through my ec now and waiting for my next in just over a week. Then on to docetaxel. Its all deffo going fast. Praise the Lord.

 

I've noticed after my 2nd Ec my mood was pretty low I was very teary and felt scared. I just keep thinking it's coming back. 😔🥴

 

 

chesterbrownbear
Member

Re: hiRe: October 2020 Chemo Startersi

Hi not a jockey, What a Wonderful life is my favourite Christmas film, enjoy. I call that COVID brain, I really struggle with that.

I had my mammogram 2 years ago which surprised me when I found the lump because I thought they should have picked up on it with the mammogram, the said they will look into it, but what’s the point now, just have to get on with it.

we are all strong and we will survive, as said in the song 😀😀

linflo58
Member

Re: hiRe: October 2020 Chemo Startersi

Hello

NAJ, I had a clear mammogram in 2019, yet this year I had a 6.5cm growth that had spread to my lymph nodes. I’m one week into my third cycle & have to admit this is the worst I have felt. Very tingly, shaky & sickly. I’m still eating like a horse though, and food tastes so good! I feel like I’m going into the unknown next time as having Pertuzumab and Trastuzumab, as I’m HER2 positive. I’m hoping I feel ‘normal’ again soon, think I’m going to start watching ‘The Crown’, been told it’s really good.

Linda xxxxx

Not a jockey
Member

Re: hiRe: October 2020 Chemo Startersi

Hi Chesterbrownbear and Linflo

I'm feeling slightly anxious about changing to Docetaxel for chemo No. 4.  My chemo nurse said it often feels like you've got the flu.  I have a telephone appointment with my oncologist a couple of days before my next cycle so it will be interesting to see what she says.

Did either of you miss screening?  I should have been called for a mammogram at the end of March but of course all screening was stopped.  I found my lump in June and when I got my pathology results post-surgery the cancer had spread to my lymph nodes.  Feeling a bit like a covid casualty.

This cycle has been slightly easier than the previous two but I still feel slightly 'off' and incredibly tired.  Hoping to feel 'normal' within the next few days.

York75 - I've been doing my Christmas shopping online too though I haven't wrapped anything yet. One of the drugs says it can cause involuntary jerking -  I guess that's the reason two copies of 'It's a Wonderful Life' dropped through the letterbox today. 😊

Shi
Community Champion
Community Champion

Re: October 2020 Chemo Starters

York ❤️ Once all your treatments are done so nothing interferes with anything 👍 keep doing it every day 👍 when eyelashes start coming back get the mascara on straight away no matter how short it trains the lashes to curl up as they grow back out rather than straight out. Try and get some of those small mascara wands they use for sampling mascara on beauty counters (you should be able to get some off Amazon) 👍 step by step 💃🏻💃🏻 You are all doing amazing and don’t forget to tell yourselves how fabulous you are because you are ❤️ Everyone is ❤️💕💕Shi xx

York-75
Member

Re: October 2020 Chemo Starters

Thank you Shi for all your lovely tips. I will buy the suggested products and keep fingers crossed they will help! 
I have never tried having short hair before, so you are right, it will be a great time to try some different styles! Xxx

York-75
Member

Re: October 2020 Chemo Starters

Thank you Jo22, 

most of my hair seems to have come out now, and with Cetraben emmolient in the bath, and an Eucerin ‘itchy scalp oil’ it seems to calm down at last.

I like to wear headscarves at home, but yesterday I wore my wig most of the day and it was more comfortable with the ‘sock’ thing on my head first. 

In my better weeks Christmas is a great distraction, I have started putting up bits of decorations already, and wrap a few presents at the time, in place of the usual mad dash to get it done!

Also hoping it will be dry in the last couple of days before my round 3, so I can tackle the garden ready for winter.

Hugs to all!

chesterbrownbear
Member

Re: hiRe: October 2020 Chemo Startersi

Hi linflo58 and not a jockey

I must admit I am struggling after my 3rd session, and my chemo brain is nuts, really struggling with normal daily activities, hate to think what Christmas presents I’ve ordered 🎅🏻. Like you I am concerned about the next 3 rounds, no one has said how they differ yet.  All I know is I’ve been given those pesky steroids to take a day before 🤷‍♀️
good luck all xxx

chesterbrownbear
Member

Re: October 2020 Chemo Starters

Hi Jo22, not braved the shave quite yet as trying to get through my last session, which seems worse than the other two. I think next week will be d day.  Also I think my wig will sit better without hair, my daughter though my wig was so good it looked as though I’d just been to the hairdressers 😀. Yes I’ve also bought some Hygges, they are great!

stay strong xxx

linflo58
Member

Re: hiRe: October 2020 Chemo Startersi

Hi everyone

Just caught up, everyone’s journey seems to differ. I’m halfway through, had 3 EC, but next 3 cycles are different. Had a mastectomy first, & lymph node removal. I recovered well, but the exercises are important. I had 2 video physiotherapy sessions which were very helpful. Under my arm is still numb 3 months later, feels weird when I spray deodorant. Lost my hair after 2 weeks, deliberated about the cold cap, but from comments read, glad I didn’t bother. My daughter bought me a ‘fringe’ hairpiece which I wear under a turban style hat. I feel better wearing this in the home. I tend to wear my wig outdoors. My lips & fingertips tingle a lot, think this is from the injections. On my previous cycles I have started to feel better once these have finished. I had a lovely soak in the bath with a Lush bath bomb last night, listening to Smooth radio. Very relaxing indeed. Think we need to pamper ourselves now & again. Take care everyone xx

Linda

Not a jockey
Member

Re: hiRe: October 2020 Chemo Startersi

Hi Jo22

3 down and 3 to go but the next three are docetaxel so I don't quite know how that might go.  Then radiotherapy.  This has been the easiest cycle so far but I think that's down to heading off the side-effects by taking the omeprazole and dulcolax and changing my diet slightly.  I am now having a bit of trouble sleeping but I can get plenty of rest through the day.

Recommended watching for anyone who works in a school - The Flint Street Nativity.  You can watch it on youtube or get a copy from ebay for a couple of quid.  I used to show it to my year 8 class every Christmas and they always loved it but it's great fun for adults.

Hope that everyone is coping as well as they can and enjoying some of those cheesy Christmas movies.

NAJ xxx

Shi
Community Champion
Community Champion

Re: October 2020 Chemo Starters

York75 ❤️ I imagined chemo like going into a chrysalis and then emerging as new butterfly 🦋 after, and googled lots of short hair styles looking forward to trying new styles as it started to grow back 👍 after treatments had finished rubbed extra dark Jamaican black castor oil on head for 20-30 mins then washed off with lush red dot shampoo bar called new 👍 it’s a magic formula that’s been passed down the threads and after treatments all finished worked 👍👍 if you get chemo curls and don’t want them invest in mini straighteners and rock a Mia farrow 👍 it is a bit like having a kinder surprise head, it can come back different colour and curly but it doesn’t matter it’s hair and you will enjoy rocking different styles. You are all doing amazing 💪💪💪 keep focused 💕💕Shi xx

Jo22
Member

Re: October 2020 Chemo Starters

HI CBB,

I'm really with you on that. I had an awful headache too and I wouldn't say its saving my hair. My husband thinks I should shave my hair too but there are still some bits that make it look normal with a hat on so I'm reluctant and not brave enough yet. Hat off to you if you can do it. 🙂

How do you find wearing your wig? Mine seems to itch after a few hours and I wonder if it's because I have hair? Do you wear the wig/ scalp cap thing? I bought some hygge headbands to wear around the house which are more comfortable but I know everyone is different.

Best of luck if you choose the shave xxx

Jo22
Member

Re: October 2020 Chemo Starters

Oh York75 I really agree with you. The impact of my hair loss has been really surprising too! I think for me the hair loss is such a visual and constant reminder of what we're going through even though I'm feeling ok at them moment. I'm sorry your scalp is itchy and sore, have you tried cera ve its supposed to be really good, I think its recommended for eczema etc. Are you going to cold cap next time?

I think you are right it is good it's winter and to some degree that covid is keeping us all inside more than normal. There is certainly no fear of missing out. But on the flip side we aren't getting to see friends and family or go out for dinner as a treat and I feel like that has a very big impact on happiness levels. 

Keep strong everyone xx

 

Jo22
Member

Re: hiRe: October 2020 Chemo Startersi

Hey UmLydia,

OH yes I've been thinking about it for weeks! I was diagnosed in early June and wanted mastectomy then but they wouldn't do it and then had 2 lumpectomies which failed. So yes after all that I want implants as I need to feel like me. I can't use any of my own fat as there isn't enough and I don't want the back flap one as I love paddleboarding and it really affects your back strength. I don't know if that matters for you playing the clarinet?

A couple of people I know have had immediate reconstruction but it does depend on your surgeon. A friend in the states chose to wait in case she changed her mind. If you have it in the lymph nodes they will no doubt remove those during the surgery and then you just have to keep doing the exercises they give you which seem hard to being with but they soon become easy.

How nice to be in France, is the treatment going ok so far? Hopefully when you are better covid restrictions will have lifted and you can get back to normal!!! As can we all!!

Acid reflux has gone very suddenly just stopped but its cycle 3 on Thursday so its like getting on the rollercoaster all over again!

Take care. xx

Jo22
Member

Re: October 2020 Chemo Starters

Well done on getting past number 2!

I have the exact same in my back & shoulders, really sore after the injections and still are now even though I stopped over a week ago. I actually thought I'd been on my phone to much so stopped using it for a couple of days! 

I'm the same as you with the cold capping so I've decided that I'm not going to have it this time (3rd cycle on Thursday). I just feel as it's left a big patch of baldness that I won't have my own hair visible for a while so might as well be comfortable during the treatment and not be there so long! But each to their own its a hard decision isn't it.

Hope you continue to feel well. 🙂 xx

Jo22
Member

Re: hiRe: October 2020 Chemo Startersi

Thanks NAJ, they did give me some of that right at the beginning but I didn't feel that I needed it then. I'll try it after this weeks session. I'm doing 6 cycles last one on Jan 21st all being well then 6 weeks recovery before surgery so they say. How many more have you got? xx

York-75
Member

Re: October 2020 Chemo Starters

Chesterbrownbear, does this mean you are half way through? That is good news.

I didn’t cold cap, and on day 10 of cycle 2 my hair has almost all gone. It adds insult to injury that the ones that remain are mostly my grey ones! 

I have found that my head has felt quite itchy and sore, so I have not used my wigs as much as I expected to. Maybe I will use them more when it settles down. The bald look does not suit me! It gets me a bit down to see myself like that, sometimes. Then I have to remind myself that it is temporary, and a sign that the treatment is working.

Im pleased that it is winter and lockdown and I’m not at work, it doesn’t seem to matter as much as home, I just have have to spruce myself up a bit for the school run, and with hats and scarves and masks it really doesn’t matter what I look like.

I find it a bit strange that I think about the hair loss as much as I do, as normally I’m not very concerned with my appearance. I want to look nice, but normally it doesn’t really affect how I feel about myself or my sense of self-worth. I guess the cancer also takes away from us other ways to feel good about ourselves - achievement at work, fitness goals, feeling like I can get things done at home and try to be a good mummy- all of these things take a big knock when you are to exhausted or unwell to do much half of the time. But we will get through it, and come back stronger. Meanwhile, thank goodness for chocolate...😉

 

Hang in there, everyone! Xx

chesterbrownbear
Member

Re: October 2020 Chemo Starters

Hi whiters14

I have just had my 3rd fec last Thursday, the first 2 weren’t too bad, but this time I had a headache throughout the session, even though I take paracetamol beforehand. I think I am going to shave my hair shortly, as you say it is a pain hiding the bald patches and the grey badger look isn’t good, also the extra 1.5 hr after when all I want to do is go home. I’ve got a great wig so I will make more use of that.

Good luck in what you decide and stay strong . 💪💪

UmLydia
Member

Re: hiRe: October 2020 Chemo Startersi

Hi Jo22

Have you started thinking if you want breast reconstruction? I have chemo until February, so it seems far away, but have started trying to research options a bit. I'm terrible at making my mind up. Apparently there can be so many complications with breast reconstructions that sometimes I think why bother. My first reaction when I found out I had cancer was take it off- I don't care.  From the beginning (end of August) they said mastectomy. With covid they will probably put off breast reconstruction anyway. 

I have some in the lymph nodes under my arm as well. Not sure what they do about that. 

I will need radiotherapy after the surgery. 

I live in Western France, in a quiet town and rural so at least I can go out for nice walks. They make me feel so much better. Its not cold but rainy and gloomy. 

I will be off work all year.  I teach clarinet and love my job so was really upset when the doctors said I wouldn't be able to work.  But teaching music has been banned anyway with the latest lockdown so finally I'm not missing much. 

Hope your acid reflux gets better.  I haven't had any mouth ulcers this time!! Fingers crossed. Small blessings...

whiters14
Member

Re: October 2020 Chemo Starters

Hi everyone I hope your all having an ok weekend.

I had my second EC on Tuesday and although not feeling as sick this time I feel like I’ve been a zombie. I’ve managed a daily walk but that is about it. Oh and heart burn I never had that as bad last time ouch.

Does anyone get really achy after their third jab oh my my neck shoulders back are sore to touch! 

Even though I cold capped my hair has really thinned and getting some patches that are harder to hide. Need to make a decision what to do going forward so I give up with the cold cap??

On the bright side it’s Sunday roast today and hopefully the day to turn the corner and start feeling more human.