October 2019 chemo starters

[KathCurtis]

Very sad and sorry for your loss Jasmine. Your mum was very lucky to have you so close to help her through all this. You now need to take equally good care of yourself at this sad time. Thinking of you 

kath

xx

[ClaireL]

That's amazing Jasmine!! Well done 🙂 x

[jasmine1897]

Hi Claire

What kind words, thank you. 
Me and my sister have set up a gofundme for money for Breast Cancer Now as it has helped me and my mum so much. We set it up 2 days ago and already raised £1230! Xx

[ClaireL]

Jasmine, I am so so sorry to hear this and so sorry for your loss. I've been thinking of you all. 

Please let us know if you need anything at all in support going forward. You have been such a brave and strong pillar of support for your mum and I'm sure she would be so very proud of you and how you helped her (and us!) at such a difficult time. Sending you love and to your family too. 

Claire x

[jasmine1897]

My mum sadly passed away on 03.02.2020 at home with her family by her side. I have been with her from the start and have seen the courage she hold on to for so long, which I have also soon throughout this group.

i wish everyone all the best to a healthy and happy future and thank you everyone for your amazing support throughout. Xx

[Cherryp]

4 EC done that didn’t shrink it very much so carboplatin added to Paclitaxel every third week. Had 3 doses now and 9 to go if mri after 6 shows progress.

i’m getting knackered very easily now and took my hair down to a number 2 and I’m missing it. So cold without hair but too hot with a wig! 

sorry to hear it’s now good news all around for everyone. I have a friend with lung cancer that has spread to the brain and she is doing OK so if they can manage it then it may sound scarier than it is and I hope that for you.  

so jealous of those at end of treatment but all of our times will come. 

hoping it’s a successful 2020 for all of us. 

[KathCurtis]

Hi all

Good to hear from people.

Jasmine thank you for letting us know how your mum is doing, I have been wondering. So sad that her cancer has progressed so quickly. Cancer is just **bleep**! How are you all coping? 
Great to hear from those of you completing chemo, makes me believe mine will eventually end (due to complete chemo in May now). 
A bit like you Purple Trunks, i have felt the weight of what I have been through recently. Although I am now very much recovering from the lobectomy and mastectomy. I do feel sad to have lost a breast, more than I anticipated, but at my age (57) I am not sure I will be able to face anymore surgeries for reconstruction or to go completely flat. But it wouldn’t be an option for two years so I may feel different by then. Meantime I am seeing chemo as a finite and final stretch of treatment and beginning to hope i can then stay clear and enjoy life (at least for some time 🤞).

This whole process is traumatic. I hope we can still have a get together later in the summer (including you Jasmine) just to mark the ending of these dark times and celebrate the warm support we have found in each other!

Love to all

Kath

x

[Purpletrunks]

So, I'm done!! I had my last Chemo on the 15th January, and I meet my surgeon tomorrow to find out about my op on 21st Feb. The final round has been much kinder to me.. but I am very pleased this part is done with. I have found finishing Chemo very emotional... I feel like I have been in a survival bubble and now Im starting to feel a little more like me its hitting what has happened, and what I have lost. And I can't stop thinking about it all reoccuring. But thats probably life now... I wonder if the niggle will ever really go away.

Officially my chemo cycle finishes on the 4th Feb. So on that day I am going for a smeear (THIS girls knows how to celebrate!!!) out for lunch, and then straight on a train to Cornwall to catch up with my business partners and see the sea. 

xxxx

[Purpletrunks]

Jasmine, thanks for updating us on your mum. Its very sad news to hear that the bastard cancer has spread to her brain. You must all be so sad, please send you mum my love and I have a HUGE hug for you too. No doubt this will be very difficult and little I can say will help that. I hope you have a strong support network around you both xxxxxxxxxxxx

[CureDars]

Dear Leaw,

Thanks for posting. I was thinking the same and hoping everyone was doing well. It’s great that you can see the end of chemo in sight. I’ve had the 4th of 9 Paclitaxel and so far it’s treating me kindly. Going for MRI today to see if this chemo is continuing the shrinkage that EC started. Waiting for result of CT thorax scan as a lung nodule was found previously and I’ve read about this on quite a few posts.

Leaw- Enjoy the break between chemo and surgery.

October ladies- How are you all?

[jasmine1897]

Hi all

hope everyone is powering through. 

Not so great news from me in regards to my mum. She suffered from a large seizure on nye whilst in a&e after I took her there after a few days of feeling dizzy. Ct confirmed it has spread to brain. My mums cancer is particularly aggressive and it is quite rare for this type of spread in the short amount of time since diagnosis. She had 5 rounds of radiotherapy and was about to start chemo again but unfortunately she has deteriorated too much and prognosis is very poor.

I was hesitant to post on here as I do not want to scare people, but it is not to scare people but to update everyone and just shows the harsh reality of what destruction cancer can cause. 

It’s so nice to hear of everyone who is getting through treatment and seeing an end at this dark tunnel. Hope everyone stays well and thank you for your support amidst the dark clouds. 

xx

[leaw]

Hi 

just wondering how everyone is getting on. It’s been quiet in here since Xmas. Hope that means your all getting through treatment with not too many side effects!! I meet with my surgeon Thursday to discuss mri I had last week &. Arrange surgery date for end of feb. Final Docetaxel chemo on 7th February. Can’t wait to see the back of chemo. How are you all getting on? 

[KathCurtis]

I wrote a post congratulating you on the achievement Cherry but seem to fail to have pressed send, so this is a bit late but nevertheless- very impressed.

How is everyone - are you all done? I am about to restart tomorrow, same regime as originally planned as apparently it’s also good for the lung c: 12 once weekly Carboplatin and Paclitaxel followed by 9 weeks of once three weekly FEC. Ugh.

On the positive side i am healing very well from right breast mastectomy and beginning to recover emotionally from the loss. Surprising what we can adjust to. And apparently I won’t need radiotherapy - i am very thankful for this. Would love to hear how you all are, hoping you are beginning to recover from your chemo.

love and hugs to all

kath

x

[Purpletrunks]

Cherry that's amazing 

[CureDars]

CherryP,

Fantastic- great idea! You have generous friends too. 

CureDars

[Cherryp]

It was my birthday in December so I decided to use the Facebook fundraiser function and asked all my Facebook contacts to donate to Breast Cancer Now. Facebook takes care of all the admin and charges and my

friends said it was easy to donate. I just used their default target of £150 but it really lifted my spirits when it raised £842 ! Felt like I actually achieved something and I’m grateful to BCN for having this forum. 

[Purpletrunks]

Dont feel you have to stop wallowing Claire, I will happily just climb in and wallow with you! Most days I can find time to be positive, but really this is wearing right? Did you watch the BBC dracula series? I feel like one of Draculas victims that's slowly having the life sucked out of me! Of course the plan is actually to achieve the opposite but  I'm just so weak. I look terrible! My eyes are sunken and red, my nose is swollen bloody and crusty, I'm really pale.  I think my teeth are even yellower! I dont say this for sympathy, obviously... more in solidarity. 

Anyway, achievable goals. I have it in my head that when this is finished I'm going to climb to the top of the highest peaks of the UK. I've no idea if its achievable 😆😆, especially as I also have a hip problem that I'm getting scans for, but I'm going to have a lot of fun trying. And dreaming about them. Once I've done them I'm going to do an overseas challenge and raise  shed load of money for breast cancer... I'm a fundraising consultant by trade (amoung other things) so figured it was the least I could do. 

But you did say achievable (and right now I struggle to climb the stairs, so mountains seem ridonkulous!)... so I'm starting small after being so weakened by chemo... I'm going to build up to walking 10k steps every day straight after chemo.

What have you thought about goal wise? 

And in other news... I may have lost my fingerprints (identity?!! 😆😆), but my hair is starting to grow back!!!

And most importantly ClaireL, dont forget that you too are amazing 😊🥰😊🥰!

[ClaireL]

Third paclitaxel was Mon for me and my phone no longer recognises me either! Thought it was just my phone lol.

I'm coughing a lot at the moment. Seems to be a sure effect for me. Really annoying. I'm absolutely shattered today and feeling really fed up. It's one of those poor me days. Hope the steroids have given up stealing my sleep and that will help. 

Trying to figure out some achievable goals for this year. So far I just have to not be fat and bald anymore!! Any suggestions welcome. 

I shall stop wallowing and just say that I think you're all amazing. You've come so far and you're all doing so well in your own ways with everything. You've all kicked so much ass already despite whatever you have left to go. 

I hope the heart rate slows for you both guys and that the next time round it gets easier. 

Sending love x

[Purpletrunks]

Hey Leaw,

Interesting to hear your heart is racing on tax 8 days post. I'm also 8 days post and get the same was worried it's my heart, even though it's been checked loads. 

Weirdest side effect to date... my fingerprints have gone 😳😳😳. I noticed that (after 2xdocetaxol) my fingerprint has stopped working on my phone, and I posted on the younger womens breast cancer forum (any of you on there?  ) and is seems its a thing!!!! Weird.

Getting really fed up with this now. Come ON spring, when the sun starts to warm us all and we will be moving into nicer territory!!

Xxx

[leaw]

I had my 4th cycle last week. First 3 were FEC which made me feel sick and a little tired for a few days after. 4th session was the T (Docetaxel) and I have had no sickness but my energy has been wiped out & heart is racing just climbing the stairs. So worn out and I’m 8 days post chemo 🙈

[mini mad]

Hi Cherryp,

i Also had paclitaxel and carboplatin for TNBC last year.

if i can help re advice/support please just ask.

good luck mini mad xx 💖💖

[KathCurtis]

I had forgotten the Someone like me option, thank you for reminder Shi.

Cherry your New Year doggie walk sounds brilliant. So pleased you could get out and enjoy it. Good luck with Carboplatin and Paclitaxel. I think i start back on this on 17/01 but see oncologist next Thursday to confirm. 
Good luck all

love

Kath

xx

[Cherryp]

Luna is such a cutie. She must really lift your spirits when she comes for a lap hug even if you do get a bit squished. Managed a walk along the beach at Camber Sands on New Years Day with my friends Doodle gang. About 30 dogs running bad around their owners and then some of them crashed out in a pub dining room for a group lunch after. It was lovely to blow out the cobwebs. Paclitaxel and Carboplatin start this time next week. Fingers crossed I react well. 

[Shi]

Kath, great photo of you and Luna, can’t believe how quick she is growing ❤️ Don’t forget to use the someone like me option on here and do speak to your bcn. The emotional rollercoaster is one of a kind ride but you are 💪💪 lady who is gripping tight 👭 and everyone on here is gripping tight of you ❤️ Keep 😁💕💕✨✨shi xx

[KathCurtis]

Whoops, didn’t mean to post that twice 😮

[KathCurtis]

Me and Luna who no longer really fits on my lap😮

[Purpletrunks]

Oh Kath what a gorgeous pic!! Sorry, yet not surprised to hear your op has left you feeling sad. We are going through so much. General anesthetics drugs can also cause sadness I think? Not that you need any more excuses.

My son to be 11 year old with probably want to do anything that's linked to gaming 🙄!! And spending my dwindling funds!!! Bless him, like most kids he is generally planning his birthday all year round 😆

[KathCurtis]

Me and Luna who no longer really fits on my lap😮

[KathCurtis]

Hi all

so exciting to hearing you are getting to the end of chemo Claire and PurpleTrunks. It is a huge step completed and definitely will need marking and celebrating probably a few times over while you process that it’s done! 
i am recovering well from the mastectomy and lung surgery. It’s crap to go through, and i am suprised how sad it has all made me, but I am also pleased to be rid of the tumours and moving forward. My chemo is due to start again on 17/01 so i still have it all to face. But hearing your experiences has me better prepared and somehow hearing that you are coming to the end also makes it feel more  manageable - like all this treatment can eventually come to an end hopefully!

Enjoy the kids birthdays - they are so precious 

love

Kath

xx

[ClaireL]

I feel a bit odd! I think I've come to get used to the routine and I know I'm fighting it by having the treatment so I'll kind of miss it in a weird way. 

Looking forward not having a life back after rads but then it's the uncertainty of it all still with coming back etc. Think I'll need some counselling or something to help with that bit. 

11 is such a great age! Does your son have any idea what he wants to do for his birthday?? Xx

[Purpletrunks]

Whilst it's been the hardest thing I've ever done, and it feels like it's gone on FOREVER it weirdly feels like it wasnt tgst long too. Does that sound very weird? 😂😂

I also have more treatment to come... surgery in feb, shed loads of radio, then h/p til oct and hormone treatment until forever. But chemo has been so crappy I want to do something to mark this bit ending before I start the next bit. 

3rd birthday eh?! Sounds fun ( and exhausting !). I was reminded by my son that his 11th birthday will be about the time I finish active treatment this week. Will have to put some energy aside for that!!!

How are you feeling about chemo ending Clare?

[ClaireL]

Happy new year everyone! So glad this time was easier for you Lou! 

I had my oncologist appointment today and I finish on the 13th as planned which is great but I'll have a four week break then three weeks of radiotherapy (every day) followed by three targeted radiotherapy sessions so not quite at the finish line. 

I was thinking the same though, I need to do something to mark the occasion. 

Little ones 3rd birthday is on the 1st march so we are having a party for that. My celebration may have to come later when I am back to my old self a bit more!! 

I need to schedule my review with my consultant too in the next few weeks! Already at the stage they want to start monitoring me. At least they are though! Hope everyone had as good a Christmas break as possible xx

[Purpletrunks]

Happy new year! How are you all?

I'm one week after my second round of docetaxel/h/p. They halved the dose so ive faired better and nowhere near a hospital so far!!! I have the date for my final chemo... 15th jan. Been thinking how to mark it, and I think lunch on the third week when I'm officially out of side effects.

Xx

[Cherryp]

Thanks mini mad that’s really reassuring. Sitting in the chair having EC4 right now. Lady next to. E having problems with reactions to receiving Paclitaxel but we are all so different that I am sure it will be fine. 

[mini mad]

Morning Cherryp,

re the neuropathy with paclitaxel n carboplatin i had a little in my fingers n hands,  which has now gone completely.  My toes and feet where affected but now it is getting a lot less and can see it disappearing completely i hope,  but its not bad n i dont have it every day.

should it happen to you,  be sure to mention it to yr chemo dr/nurses so they can ieep an eye on things.   Any other questions just ask

mini mad xx 💖💖

[KathCurtis]

Hi all

Everyone seems to be having twists and turns in their journeys. Hope you are all able to enjoy some rest and respite from tests and treatment over Christmas. My very limited chemo experience was just the first two of first round of Carboplatin and Paclitaxel. Was way better than i had feared - only suffered indigestion and a little tiredness. It was almost too small a sample to mention but as i see some people worrying about it at least it might help knowing that you won’t necessarily find it unpleasant to start with !

 I am having a bit of pain post surgery so am pleased to be off to see nurses for a check up today. 
love

Kath

xx

[CureDars]

Hi Cherryp,

It has reduced so hope it was encouraging for you. We’re so dependent on everyone else’s knowledge going through all this. You’re a step in front of me. Have lymph involvement.  Had 3x EC and expect MRI results early Jan before starting 9 x Paclitaxel .Also have lung nodule and another CT in Jan to check on it. Have read and heard differing accounts of this weekly one. Must admit to being anxious about it but hope Christmas will take my mind of it too. Perhaps mini mad can help.

Everyone, enjoy what you can. A healthier New Year to us all.

[Cherryp]

Thanks mini mad. Did you get neuropathy? Apparently it can be more common when getting it weekly. 

[Cherryp]

I had the genetic testing. Gave blood for it on 16th October and got the results Friday 13th which were negative which was such a relief. 

[mini mad]

Hi Cherryp,

i also had Paclitaxel and Carboplatin over 12 weeks.  Paclitaxel was once a week and Carboplatin was every 3 weeks.

i finished my chemo 3 months ago now so if i can give any help/advice once you start ( i know thats not for another 3 weeks ) please ask 👍  and good luck 💖mini mad xx 💖💖

[KathCurtis]

Yes I had genetic testing. Takes quite a while to get results. I didn’t have the gene but needed mastectomy because skin was compromised!  Fingers crossed for your MRI. Let us know how it goes 

kath

xx

[leaw]

Have any of you ladies had the genetic testing? To see if you have the BRCA1 gene? My Dr has referred me for it to decide whether a lumpectomy or mastectomy will be my surgery option. I have been referred for my mid chemo mri to check on the size of my lump x

[KathCurtis]

Great news on scans Cherry. Hope new regime will be kind to you. 
I took off the post surgery bra for the first time this morning and have suddenly hit some pain. Damn. Taking pain meds and hoping it passes! Have called nurses for advice so hopefully will soon be sorted. It is one hurdle after another for us folks. Hope you are all able to enjoy some Christmas cheer 🤞🎅🎄despite it!

love

kath

xx

[Cherryp]

Scans were OK. No spread lymph and looks like the nodules in my lungs are scar tissue so just the lump to deal with. MRI showed it hasn't done much on EC 38mmx18mm to 35mmx15mm but as it hasn't grown they are OK with me having dose 4 so that I don't have to rush back from aunts for weekly sessions. 10th Jan I will switch to Paclitaxel and Carboplatin on a weekly basis. Not looking forward to that but it's another 3 weeks away so that's good. 

Hope everyone is starting to feel like they can face the festivities next week?

[Cherryp]

I’ll hear all my scan results tomorrow and they will drive whether I have EC4 or switch to Paclitaxel but I really don’t want to change drugs this side of Xmas in case I have the same side effects that some of you have had. I’m supposed to be taking my mum and sister to my aunts up in Nottinghamshire as it’s our first Xmas without dad so could do with “only” having my usual nausea. 

I discovered the sweets called gin gin last round. They are ginger candies and they worked a treat for me.

[KathCurtis]

Really pleased to hear they have sorted the Paclitaxel for you Clare. Hopefully it will be easier on you now!

love

kath

xx

[ClaireL]

Glad to hear you're not doing too bad Kath. Have been thinking of you. 

All ok here after dose 2 of paclitaxel. They lowered the dose slightly so that I don't react again but luckily no extension to the regime so it's ok. 

Hope everyone else is doing ok? Purple trunks are you out of hospital yet??  X

[KathCurtis]

Hi all

surgery survived, and much less difficult than I expected! I shed a few tears for right breast before surgery but it was time to part to save my life, so i have no regret today. In fact I feel so happy to have the two surgeries behind me!

How were your scans Cherry?

and how is everyone else?

love

kath

xx

[KathCurtis]

Thank you Shi 😊 🙏 

[Shi]

❤️👍❤️😘kath 💕💕✨✨shi xx