MAY 2021 CHEMOTHERAPY STARTERS

[noodledoodle]

Hi all

sorry not posted for a while as been away for a break after finishing EC and before starting weekly chemo. 
So sorry to hear about your mum @Michelle21 You are going through such a rough time, but you will be okay. One step at a time and our thoughts are with you. You are doing amazingly well. 
I start my paclitaxel and Carboplatin on Tuesday. It is so reassuring to hear how well you are handling it and I can’t believe you have had 2 Carboplatin already. How fast has that gone!

@gardengirl200 My sister has lobular BC and has had the test done for chemotherapy and she was offered it. She is currently in the middle of chemo too and doing well. She too had nodal involvement and has had mastectomy first. everybody is different and I am sure your team would not have offered you chemo if they didn’t think it would be of benefit to you. Good luck with the rest of it, I am sure topee PPP

[TicTok]

Gardengirl200 Hi and welcome to our lovely group I have stage 2 cancer with 2-3 nodes 14 ml with 30 ml calcification around which will have to be also removed , I have just had my 3 rd Docetaxel and I have had no problems with it is only the steroids that cause sleep issues …. I have a scan before my next and final doxetaxel then I an changing to a new mix for my next 4 . 
good luck for Wednesday x

[Karden]

@gardengirl200 Welcome to this group, I think you will find it really helpful and supportive as I have done.

I had 4 cycles of Docetaxel with cyclophosphamide, pertuzamab and Herceptin between December and Feb. My main side-effects were diarrhoea, mouth ulcers and fatigue and a change of taste. I went off my favourite cup of tea for the duration but my taste returned as soon as it finished. There was also hair loss and weakened finger nails which developed white ridges and when these grew to the top of the nail would break off. They have now recovered too.

I then had a lumpectomy and 7 lymph nodes removed. My tumour was 2.5 cm and HER positive and the Docetaxel reduced it to 0.5cm.

My FEC phase of chemo started at the end of April and ended last week.

Everyone gets some of the side-effects but not all and my oncologist said that I had tolerated it well. I am 61 and in good health before all this.

You will get through it and remember to ask for and use any meds to manage the effects, it really makes a difference as well as having a good old moan on to this group. We are here for you. xx

[gardengirl200]

Hello all, 

I’m new to this forum; I so wish I had discovered it back in May when I started my chemo. I am now half way through, having had 3 rounds of EC and I start 3 rounds of docitaxel on Wednesday. I was diagnosed with lobular BC in March ( ER positive, HER negative) with a 5cm lump and 1 positive lymph node. I had a single mastectomy in April. 

I have been reading the threads on another board and I see some have had bad reaction to docitaxel. Have any of you had it yet and how have you found it? 
Also, on another thread on another board there was a discussion about lobular cancer and it seemed a few people diagnosed with lobular were offered a test which for them determined that chemo would not be of benefit. I wasn’t offered that test ( just the option of a clinical trial which after a lot of thought I decided not to do) and I am now half way through chemo. Is there anyone else on this board who is having chemo who has had lobular cancer?  Because inevitably I am now wondering if the chemo is actually making any difference. 
sorry if I’m covering ground already covered earlier on this board. 

[Sammy73]

@Michelle21 

So sorry about the loss of your mum, such alot to cope with, sometimes small chunks at a time is the easiest way. Try not to let things become overwhelming. Easy to say I know, when I lost my husband, 5 years ago, I wrote everything down, pages and pages but I could tick things off slowly rather than get flustered at it all.

I think people attending the funeral will understand you wanting to keep covid measures in place, it's your family's decision not theirs. Big love and hugs. Xx

[Poacher65]

@Michelle21 I am sending you much love at this sad time. I am so sorry for the loss of your Mum. Xx

[TicTok]

Michelle 21 so very sorry to here about your mum😢you have a lot to deal with xx

 I Did change arms as I also have a massive bruise where my bloods were took on Monday all went ok though .

love to you all xx

[Michelle21]

@Love running thank you

for your kind words, it is so helpful to have the support of such wonderful women xx 

[Love running]

@Michelle21 

I am so sorry about your mum. I send you all my love in these difficult moments and wish I could take some of the pain away from you. If you want to restrict the numbers of attendees and ask for face masks and social distancing at the funeral, people should understand and respect your choice. It is a wise choice, considering the current situation with the Delta variant and also that going under chemo makes us more susceptible to infections in general. 

You don’t need the blood transfusion to make you a superwoman, you are a superwoman. With all the things you are dealing with and still finding time for nice words to all of us, you are definitely a superhero in my eyes. Thank you.

sending lots of love and hugs.💕

[Michelle21]

@Karden  thank you and I am sorry you have also lost your mum recently. You too must feel like you are travelling a strange path, losing your mum and then being diagnosed. There is never an easy time for either. 

I seem to be going along okay and then remember my mum has died and it washed over me like a big wave. 

Thanks again for your kind words xx

[Love running]

@Karden if you ever come back to Sweden for work or for fun and pass by Stockholm, I would love to show you around. It is a beautiful city, quite close to nature. Next summer, I have planned to walk part of the St Olavleden pilgrimtrail, it is the northernmost pilgrim trail in the world. It goes from coast to coast, from Sweden to Norway.  if any of you is interested😀

I hope the rest you took last week build up your strengths and that you can enjoy your two weeks of respite - it is so precious. 

I am longing for my hair to grow again and dropping the cap. I am mostly wearing caps and embracing the hipster look 😂 because I cannot tight a scarf without looking like a pineapple. I have not worn my wig either, it is too hot at the moment.

I am curious how my hair will look like when it grows back. I am a brunette with very straight hair but I had grey hairs coming through before they fell. In my wildest dream, they will be curly and blond. It will be interesting, but it will be a while (I guess not before November)

Have a good day

[Karden]

@Michelle21 

@Michelle21 I'm sorry to hear about your Mum Michelle, you must be heartbroken. It will be a difficult time for you on top of your treatment. I lost my Mum almost a year ago on 22nd July and I have some idea of how surreal it must feel.

Don't push yourself to do too much and take care of your own needs. Let people help you when they offer. Re social distancing and mask wearing - it's your choice to continue with this if you wish. I'm sure people will understand when they know that you're having treatment. 

Sending much love and a virtual hug. xx 🤗❤️

[Karden]

@Michelle21 I'm sorry to hear about your Mum Michelle, you must be heartbroken. It will be a difficult time for you on top of your treatment. I lost my Mum almost a year ago on 22nd July and I have some idea of how surreal it must feel.

Don't push yourself to do too much and take care of your own needs. Let people help you when they offer. Re social distancing and mask wearing - it's your choice to continue with this if you wish. I'm sure people will understand when they know that you're having treatment. 

Sending much love and a virtual hug. xx 🤗❤️

[Michelle21]

Hi everyone 

I haven’t been feeling very chatty lately. My beautiful mum died last week. As you know I knew it wasn’t far away but that doesn’t take away the pain of losing her. My life feels surreal, my diagnosis, mum getting ill and dying, it’s difficult to believe it is all happening. Anyway we have her funeral planned for 19th which I’m a little nervous about as all restrictions end then so no face masks or social distancing 😷😱

Its good to hear everyone is getting to the halfway mark. That is a real milestone for us and feels like the home stretch. I hope that everyone who has a change in treatment tolerates it well. Today I am having number 5 of paclitaxel which I seem to cope well with, very few SE’s. Every third week I have carboplatin which caused me to be anaemic after the first one so on Monday I had a blood transfusion. Hopefully that will make me like Superwoman! I think it takes a week to fully kick in but I already feel a bit better. 
@Love running Your holiday sounds and looks fabulous. I’m sure your children will have a lovely time with their grandparents.

@Sammy73 Happy Birthday! I hope you are able enjoy your day even without much sleep. I hadn’t heard of Rick Stein at home, it looks delicious. I did a cookery class at his place once, it was really goood. 
@Karden Yoy must be so relieved to be putting chemo behind you. It has been quite a drawn out process for you with surgery in the middle but now your hair can grow and grow! 
@TicTok how are your veins feeling now? Did you swap arms? 
@noodledoodle have you started carboplatin/paclitaxel now? If so how are you finding it? On the whole I’m not finding it too bad, I have done 2 carboplatins now. 

Best wishes to all xx

[Love running]

@Sammy73 I hate the steroids… they mess you up physically and mentally. 

I wish I could wipe your tears and cheer you up on your special day. I send you lots of love and hugs. 

[Karden]

I have been reading all your posts but apologise for not replying individually. It seems that everyone is coping well and dealing with whatever comes along.

I must say though that @Love running you have had an amazing holiday and the photo is stunning. I have visited Sweden in the past - Gothenburg and Marstrand, and I loved it. It was for work though so I didn't have too much time to see everything.

I had my final FEC a week ago and I slept on and off all day on days 3-5, it took much longer to get over it, maybe the build up effect? I'm ok now and enjoying the respite before starting on the Letrozole and Ibandronate in 2 weeks. I have got my radiotherapy set up appointment on Monday.

My hair has started changing from spiky stubble to soft fluff so I know it's starting to grow again. White and grey at the moment but I will see how it goes.

Best wishes to everyone. ❤️

[Sammy73]

Thank you x

[Sammy73]

Thank you @Love running 

I'm red puffy faced and cried most of the night cos I couldn't sleep!! Joys of steriods!! Doesnt normally bother me. Anyway will try and make the rest of the say passable xx

[TicTok]

Sammy 73 …. Happy Birthday 💐have a lovely day xx

[Love running]

@TicTok Good luck today. 

[Love running]

@Sammy73 Happy birthday 🎉💐🎂🍰. Have a wonderful day.

[Love running]

@Coastal 

Day 3 after paclitaxel, and it has been going well so far. No nausea at all. I got so tired right after the infusion, probably due to the anti-histamine to prevent any allergic reaction. So I took a nap but then of course the steroids kicked in later in the evening and I could not sleep. Binge watch TV series.

So apart from a bad night and my face looking like a cocktail tomato or full red moon (from the steroids too), I have not experienced anything bad yet. Oh, I am not in need of Movicol 😂 - I have been warned that it might have the opposite effect and it does. Hopefully, it can regulate itself to a normal flow in the coming days...

My friend Lin which I met at the clinic and who is two weeks ahead of me (so on her 3rd paclitaxel) feels that paclitaxel is much gentler than EC. For her, it has been day and night. 

I have not heard about the iced gloves and socks but my oncologist told me the same than you, that if I experience any of the numbing in the fingers or feet, she will adapt the dose and even reduce the number of it (to a minimum of 9 instead of the full 12). Although it is reinsuring, it is still scary. I cross my fingers that you and I are going to go through these 12 weeks without loosing our touch and feel. Let's hope we can get through this smoothly.

Hugs, 

[Love running]

@TicTok Give Boris good kick in the b... from me too😉

[Love running]

@Sammy73 good to hear that it went fine today and that you can fully enjoy your birthday celebration and 3 course meal tomorrow. 

[TicTok]

Bloods all ok 👍….. so here we go again ….. going to give Boris another pasting 👹. 

love to all xxx

[Sammy73]

Thanks @Coastal we've ordered a Rick stien home 3 course meal so tomorrow night to try and celebrate, all went well today so fingers crossed no different side affects then onto the next flavour!

X

[Coastal]

Hi @Purpledaze I just bought a snood from fat face - thanks for the recommendation I really like the pattern and it feels really comfortable.  I seem to have gathered quite a collection - so far I've got four sloppy hats, an outdoor hat, two silk scarfs, bandana and now the fat face scarf!  Argh! I do wear all of them though depending on how I'm feeling!  Hope you're having a good day xxx

[Coastal]

Hi all 

Hope everyone is having a good week! I'm thinking of you all.

@TicTok I hope your blood tests come back ok and your 3rd chemo can go ahead on Thursday.  Sounds lovely to have a break with your grandson next week!

@Sammy73I hope your last EC goes well today and have a wonderful birthday on Thursday! 

Lots of love to all xxx

[Coastal]

Hi @Love running That picture looks amazing and it must have been bliss to escape the cancer world, treatments and worries for a bit of normal life.  How beautiful it must be there and your kids will have a great time I'm sure with their grandparents and fantastic for you to have a proper break with your husband - and go on dates!!!  Wonderful!  Also great news you got your other covid jab! 

Glad to hear that the paclitaxel is going well so far, I'm starting my first one in two weeks, so am officially half way through which feels good.  I'm worried also about the effect on my hands and feet, particularly my hands as I'm a part time artist, oil paintings mainly, it would be really awful to lose feeling in my fingers and hands, and for you for your running!  I've looked up about wearing iced gloves and socks, but as it's a long infusion, not sure how to keep these cold enough.  I spoke to the Oncologist and chemo nurses - the nurses hadn't heard of them and the Oncologist just said not to worry about this.  They said if it's a problem they would reduce the dose.  I guess we will have to just wait and see. 

Lots of love to you and to every lovely lady in our group xxx  

[Coastal]

Hi @Poacher65 That all sounds really good - fantastic that the tumour is responding to treatment! that must be really reassuring, and you still have more chemos to go to reduce it even further.  I hope your first docetaxal has been gentle for you - it's unsettling changing drugs.  I've just finished my last EC and onto paclitaxel in two weeks, it feels really good to be halfway but do feel very tired this time round - weird combination of restlessness due to steriods so not sleeping but feeling knackered at the same time!  I'm hoping paclitaxel will be okay - I worry about the effect on my hands and feet, but I guess we can only hope for the best.  My hair is getting thinner and thinner so I'm going to have a haircut at the local macmillan centre today to make it look a bit less straggly.  I'm wearing scarfs now to cover the bald patches.  Take care and lots of love xxx   

[TicTok]

Sammy73….that’s brilliant news 👍well done and I hope you have a great birthday 💐xx

[Sammy73]

@Love running wow what a wonderful time you've had!! It looks and sounds insanely good!! 

All, I have passed my bloods tests so last EC tomorrow ready for my birthday on Thursday!! Deep joy!

Have a good week ladies x

[TicTok]

Love running…… wow that looks fabulous, glad you have had a lovely holiday sounds like you did lots of normal things which we all need to do , we are taking our grandson away for 3 nights next week so looking forward to that 😁…….hopefully my bloods will come back ok so I can get my 3rd chemo on Thursday 🤞. 
hope everyone else is well and doing ok 

love to all xx

[Love running]

Good evening everyone,

Just dropping a line to say I am back in town after what was a wonderful 3 week break far from the city, far from BC, and far from the hospital. 

As promised I am posting a picture of almost the midnight sun (the summer cottage is not far north enough to have a full midnight sun). The picture was not taken on the longest day of the year because that day was rainy and the evening cloudy but one day later. It was taken at 23:00 from the field outside the house. We celebrated midsommar the traditional way but only the four of us. We were not yet ready to mix with the bigger crowd of relatives, as I was at my most vulnerable on the immune front. 

I will watch the pictures of these holidays over and over again the coming weeks to remind me of what it feel to live the life from before, without treatment and blood sampling. 

I have started my first round of Paclitaxel today (one down, 11 to go).  No nausea, although right after treatment I got so so tired that I had to take a nap. Since I still had to take steroids today, I hope it will not keep awake tonight. So far so good. I have to admit that although been told that it is gentler than EC, I am ready scared of the possible neuropathy and permanent damage to the nerves, which probably mean the end of my trainings and runnings. Fingers crossed. Anyone else has started Paclitaxel yet? how do you feel?

One good news is that I got my second COVID-19 jab (7 weeks after the first one) and no side effects. 

We left the kids in the north with their grand-parents for 3 weeks. Although it breaks my heart, I know that they will have a great time with them, just chilling and enjoying the beautiful Swedish countryside. They might also get a bit bored and that is good too, to develop their creativity. I also need to admit that it feels a little nice to have time for me (and my husband) for few weeks. My husband and I went on dates (even went to restaurants which have not done for over one year) and were delighted to have full grown ups conversations without interruption. We spoke about future plans when all this is over and allowed to dream. 

Sweet dreams to all of you strong ladies. 

Backhägen, Sverige, Midsommar 2021

[Sammy73]

@Poacher65 

Morning, sounds like a plan is set for you, hope all goes well. 

In regards to the injections, I have used (1st round) over the counter codine and ibropufen as I was still in pain from surgery, knock you out a bit too. Chemo suite and surgeon were fine with that and 2nd round I used paracetamol once injection in we are told to do b4 bed and obvs no temperature pop paracetamol and I have not had any real pain. Maybe give that a go. I know we are all different but if you can be pain free, just a thought. Good luck. Xx

[TicTok]

Poacher65 …My first 4 are docetaxal and I have been fine got my 3rd next week , but like you say the steroids do cause sleep issues ….. good news about the shrinkage 👍….good luck today and I hope all goes well xx

[Poacher65]

Good morning all you amazing ladies

@TicTok @noodledoodle @Sammy73 

@Coastal @Karden @Purpledaze @Michelle21 

Pre Docetaxal Steroids caused very bad nights sleep last night...just couldn't sleep despite being so tired!

Got 4/6 chemo today...1st Docetaxal so nervous anticipation of what is to come today and over next few days as side effects evolve.

I get so worked up about the injections too as they make me feel pants but I know they do great things for my immune system so try and focus on that. 

Had my D-day of appointments on Wednesday and it went well. Surgeon pleased with how tumor is responding so far and went through my surgical plan, booked for therapeutic mamoplasty on 16th September if all 3 chemos left go to date plan. Surgery will be approx 5 hours long...doing reduction of left boob aswell as removal if tumor on right side.  Having Breast MRI after last chemo as they are hopeful Docetaxal will shrink and destroy even more and also need to see what's happening with the 2 lymph nodes they know about. Surgeon hoping to avoid fill clearance of nodes and so am I. Hopefully get away with the sentinel node..the one we know had cancer cells in it on biopsy and a few others close to that one but as ever I trust my surgeon so I'll go with the end plan and deal with it after.

Oncologist also please with response so far...although put the heebie jeebies in me about side effects of Docetaxal...im trying to stay calm and just see how I react as I know we are all so different with our side effects.

@Sammy73 I was so sad to lose my hair and got some emergency wigs off Shein of all places which for their price..between £10 and £20....are great. Also went to the hospital wig lady who was great, got one with my £75 voucher that is identical to how I used to have my hair..the wig lady cut it whilst I was there to make it look even better. Only problem is I am a natural red head and the wig more brown with blonde, although looks OK. Bizarrely I feel more conscious with my wig on especially around those who know about my diagnosis. I do tend to either be bald or have my turbans on at home and when I go out although I'm not going far...become a bit of a home hermit. 

Wig wearing is such a personal choice, no right, no wrong so just go with the flow and do what's right for you on that day. 

I follow all you amazing ladies updates on here and even when I don't reply you remain in my thoughts.

All of you take care and I will keep reading what's going on in this little family I've joined.

Love to all xxx

[TicTok]

Purpledaze…. Congratulations reaching to half way mark 😁well done  👍x

[TicTok]

Sammy73 I have read that book and just finished the cancer ladies running club book by Josie Lloyd which I also enjoyed , if anyone fancies a read xx

[Sammy73]

@Purpledaze 

It's strange because we should embrace how we look but it's others reactions I seem to worry about!!

I have a really good book, actually my Austin best freind found it and sent it to me.

Tea and Chemo, by Jackie Buxton very real but inspired by her and her breast cancer journey, just putting it out there x

[Purpledaze]

Thanks @Coastal it didn't go too badly. The nurse slowed down the infusion of one of my drugs, and that helped reduce the weird effect it always gives me straight away.

And the good thing is that I won't be having that drug again 🙂

Feels good to have reached the halfway mark! 💪🏼

Hope your day is going well x

[Purpledaze]

@Sammy73 I haven't gone done the wig route, but appreciate everyone's different. Sounds like you've got some good tips there.

Like you I preferred hats and head coverings. After sampling different types, my fave has been a snood from Fat Face. They are super soft, come in different colours (all lightly patterned, tho) and I find them not too hot. You can also leave them 'long' so nape doesn't get chilly, or wrap / tie them up. I wear them for work and outside. I realise this is still more obvious than a wig, but it gives me confidence and hides my head stubble 😂😂

Hope you find what works best for you x

[Coastal]

I know what you mean @Sammy73 about lunch inside.  It's tricky isn't it.  I've still got some fringe hair and have been wearing this with the fringe sticking out.   It's kind of a sloppy hat/scarf thing and doesn't look so weird inside.  

https://www.amazon.co.uk/gp/product/B08TC4JTMB/ref=ppx_yo_dt_b_asin_title_o05_s00?ie=UTF8&psc=1 

I'm really glad I've got the wig though as want to have something that makes me feel completely normal.  What I'd also say is it was a good opportunity to try lots of other hairstyles/hair colours you might not have thought of as options for when your hair does grow back!  I've always had brunette hair but my wig is blonde/light brown streaks, which I think is much better for my middle aged face 😁.  So when my hair does grow back, I'm going to have it coloured.  So a positive!  xxx

[Coastal]

😍thank you @Karden 

[Coastal]

Thanks @Karden you are totally right.  I do feel I'm bottling it up which is not a good thing.  People often say that the worry and anxiety gets worse after treatment, and I worry that I'll not be able to deal with it.  I do think the antidepressants are working because I know I felt much worse before, I was waking up in the middle of the night worrying which I don't do now.  It's only a low dose though and I don't want to up it - the Oncologist has been very helpful talking to me about how I'm feeling, which has been great.  I'll think about the someone like you - thank you!  that might be a really good thing for me.   I do find it reassuring looking at this forum, it definitely makes me feel less alone and people are amazing on here - so strong.  Thanks for your very kind words 😘 xxx

[Sammy73]

@Coastal thank you very much for this. As I said earlier I kept poo pooing the wig thing, im a hat girl but when out to lunch inside with a hat on its made me quite self conscious. I will take a look at suggest link thank you again xx

[Coastal]

Hi @Sammy73 I got a wig from Trendco which I think looks pretty good.  I had a couple of appointments with them to try on all the wigs - the ladies there were really lovely and supportive, I took photos and videos and showed the options to friends and family before deciding on the wig.  It wasn't the cheapest - it cost £165 and is synthetic but looks real to me anyway!  I also got the wig prescription from the hospital - bit of a palaver I had to get a referral from the chemo nurses to a special hospital department, pay an amount of £75 to get a £150 voucher, which then got sent to Trendco.  If you live near Hove or London you can book free appointments through their website https://www.trendco.co.uk/ Good luck! xxx

[Coastal]

Hi @TicTok that must be reassuring having the nurse there to check all's okay but will be interesting to see whether that's the same for your other 4 chemos.  I asked for the PIC line before chemo started because my friend had had it (and said that it was really important I asked for it so I did) but I was also really worried that they wouldn't be able to find a vein each time because my veins are difficult to find on my right arm (and they can't use my left as I had all my lymph nodes taken out).  They agreed to do it when I asked but not many people at the unit seem to have it (and they often have difficulty putting in the canulas).  I guess there's a cost implication as they can only be put in by a specially trained nurse and you have to have the PIC line washed out every week by one of the IV nurses. xxx     

[Karden]

@Coastal 

Here's the support service.

Someone Like Me

https://breastcancernow.org/information-support/support-you/someone-me

[Karden]

@Coastal I agree, managing our emotions is hard, especially when putting on a brave face for friends and family.

It's important though to acknowledge our worries and fears and talking to others can really help. I think there's a buddy scheme where you can be matched up to someone who has been through it before and you can talk on the phone. I will search for it and put the details on here.

Do you think the anti-depressants are helping yet?

This forum and the amazing women on here are a fantastic support too. Keep talking to us all and you will get through this. 🤗🤗xx