October 2019 chemo starters

[Cherryp]

Things I am grateful for today:-

1. Lumpectomy yesterday was successful. Felt relatively safe in the hospital. Weird to see surgeon in full on gas type mask and walked into operating theatre rather than a pre-op room which was fascinating. She thinks she got it all and only 1 lymph node took up the dye so only 1 removed from just one incision under my arm so although my arm pit is a bit sore now cosmetically I am delighted with the result even though that was not my priority. Doing my exercises which are not too painful. I have a good range of movement already. 

2. My eyebrows seem to be coming back full and dark so suddenly I look less like a chemotherapy patient. 

3. I get to experiment with all kinds of hairstyle lengths as my hair returns and got rid of all the hair dye without having to look like a zebra on the way. A whole bunch of lovely new soft hair. I will look after this lot after abusing hair with chemicals for years!

4. For the next two weeks until the pathology confirms or denies it I can consider myself cancer free and just focus on recuperating ready for my insurance policy radiation. 

feeling super positive today and the sun is shining too. Hope all of you are having good days too. Now I just need to muster some energy to get myself up and at ‘em!

[KathCurtis]

Hi all

so pleased to hear lots of good news and the end approaching now. What a rocky road everyone has had to travel. Can hardly believe there will be an end point 🤞

thank you for EC advice CureDars - funnily enough corned beef is something i am eating too. Helpful to hear that EC took your body a couple of weeks to process.

Good luck all with Surgeries and radiotherapy.  Keep posting updates on how you are doing. Really cheering us all on down the home straight 🎉👍

love

kath

xx

[CureDars]

Hi Kath,

Yes you do seem to be ‘back to front’ in your treatment but the powers that be have decided that’s what’s best for you. I can identify with you completely as my 1st EC was a learning curve but the advice given by the chemo team and the extra meds given for the next 2 infusions certainly made life easier.

I lived on the sofa for 2 weeks after each EC and then got out in the 3rd week before it all started again. Of course no Covid 19 then but it was winter time. Answering your question re food, we repeatedly get told everyone is different. Just eat what you fancy and think outside the box- is what I was advised. This led to me devouring corned beef with tomato sauce ( not had for decades) for breakfast! I did stick to drinking copious amounts of diluted fruit juice and cordial for 5 months. In fact I have only realised, now 3 weeks after surgery, that I’m not thirsty anymore!
Will be thinking of you as your journey continues. Good luck 😀

[CureDars]

Hi Cherryp,

Yes it is good news. A step further for you and we all understand that feeling. Coincidentally I have just had a phone call from my surgeon- instead of an appointment- and I’ve had good news too. Following my surgery 3 weeks ago there is a ‘good margin’ and no further surgery required. Next stop - radiotherapy.

Will be thinking of you next Wednesday.

Take care

[leaw]

Congratulations cherry this is fabulous news. I’ve had my radiotherapy planning appointment, my start date is 29th April, need 20 sessions ( 5 of which will be boost sessions) I’ve started my tamoxifen, had a little heartburn so far, not sure if this is a side effect. Hope everyone else is getting near the end of treatment..... the end is in sight ladies 🍷🍷💯🎂😝😝

[KathCurtis]

Hi Cherry 

so pleased for your good news 😊👍. The op will soon be behind you too, and they manage them so well these days you will soon recover.

i seem to be doing my treatment the opposite way round to everyone else, just had first EC last Friday after the 12x once weekly Carboplatin and Paclitaxel. I have been exhausted by the EC. Much more impactful than previous chemo. Been on sofa for a few days and horrible diarrhoea . Ugh. Today is day 7 and I seem to be turning the corner. Anyone any advice on how to manage next two of these- what to eat/drink etc. 
hope everyone is steering clear of cv and coping ok with all this 

love 

kath

xx

[Cherryp]

In these crazy times I had good news yesterday. Had MRI and CT last week. No change on CT so I think that means they are clear of cancer and tumour has halved in length. Met with surgeon yesterday at Royal Marsden in Sutton and op is scheduled for next Wednesday so I am so relieved. Hair is growing back, I have teeny tiny eyelashes and five o’clock shadow eyebrows so the world seems so much brighter today. Hope you are all doing OK??? 

[Cherryp]

Original surgeon and hospital I was going to is no longer an option so waiting to hear if I can go to Royal Marsden in Sutton instead. I have scans next week but no surgery date yet and I’m starting to freak out that all this chemo will have been for nothing. So pleased you’ve managed to have you ops and hoping they will bring me forward as officially drugs Finished doing their business on Friday. It’s a very worrying time. 
mon the plus side my energy levels are starting to return!

[Emzlew]

Spoiler

Hi everyone! 

I hope you are all keeping safe.  It's hard with hospital trips during these strange times not to feel extra vulnerable! 

Thankfully my surgery went ahead on the 16th march.  I had a skin sparing mastectomy with temporary implant and full lymph node extraction.  All went well with the surgery but after the first week I then developed skin necrosis.  Absolutely disgusting! 
Unfortunately with the hospitals the way they are at the moment I was too afraid to ring as I knew what they were going to say.. but by 13 days after surgery I then developed an extra infection I had no choice but to ring.  I was admitted at 8pm Sunday night and in emergency surgery by 11am Monday morning.  They had to remove the entire breast as it was in such a mess.  I am over the moon that they have removed it and I feel so much better mentally!!  I was in such turmoil with watching myself literally rot and with the threat of covid I got myself in such a state.. 
The hospital were amazing and I'm now 6 days post second surgery and feeling so much better already!  
They have also told me that they will be reducing the number of days of radiotherapy but that won't be for a while yet.  I have an appointment on Tuesday to check my wound so I'm keeping everything crossed that I'm healing properly this time.  
It's all been quite traumatic but I'm so happy to have had it done! 
I was told they removed 15 nodes and 4 were positive.  Also the margins were clear around the main tumor but it was very close to the front.  After having a full mastectomy of that side now that should have got rid of everything, hopefully!  

They are sending the rest of what they removed to pathology so hopefully that will confirm everything has gone?! 

I'm finding this whole isolation really hard but not because I don't like being stuck in.  I'm actually loving being at home with my babies, I'm just frustrated with my recovery and not being able to get stuck in with them.  I'm feeling super tired and sore so I can't do as much as I'd like to be doing.  I know it will come but it's just frustrating! 

I hate the trips to hospital too.  I think I was more anxious about going in because of covid, not surgery!  I did the stripping at the door and straight into the shower and washed everything when I came home.  I just hope I've done enough to protect my family. 🤞

What are you all looking forward to when all of this crazy time is over?  Meaning our treatments and isolation?  

I'm planning on arranging a big ol'knees up with friends and family!  I love a party! 

How are you all doing? xxx❤️xxx 

[Purpletrunks]

Hi Curedars

Great to hear your surgery has happened..  thank goodness it wasnt cancelled

 We could really do without this CV19 ontop of everything else right?

I am doing good. My pathology results were excellent and I'm cancer free ( with all the usual caveats). Herceptin and pertizumab have started up again, I've started tamoxifen and I have my rads scan booked in for next week

 My sessions have been reduced from 20 to 8, it's a national directive in response to CV19. But it's similar dose so sounds like a winner to me. I'm just do pleased it's not been cancelled... yet!

Dont like all my hospital trips though!

I'm fatigued in the evenings but managing to excersise and work daily. I can feel my strength coming back. 

Hope everyone else is doing well!!

Xx

[CureDars]

Purpletrunks,

How are you doing?

Thanks for the link.

[CureDars]

Leaw,

What good news! Delighted for you. 2 weeks till my result and radiotherapy details.

Have to admit that I’m finding surgery recovery difficult under the present conditions. Get well cards are nice but family and friends visiting would help tremendously. Hope I can remain sane! Good luck with the rads.

[CureDars]

Cherryp,

Any news on your surgery yet? Please update us. I think TN surgery is being treated as a priority.

Mine was brought forward at The Nightingale, Wythenshawe, where I was being treated as the ward was being closed down due to Covid19. It was a terrible rush, pre op one day and surgery the next. (Under 3 weeks from chemo finishing. Lumpectomy and full node clearance.) No front fastening bra or correct opening pyjamas- didn’t matter in hospital- but would have preferred to be able to go shopping and be prepared physically and mentally.
Realise that I am lucky to have had the surgery but no chance to celebrate finishing chemo and recovering somewhat. SORRY FOR THE MOAN! What a double whammy- cancer and corona! Hoping radiotherapy will not be delayed.

I have some cute white hair fluff too! Good luck!

[Cherryp]

I had to stop the paclitaxel as it was affecting my fingers and toes too much so had last carboplatin two weeks ago and happy to not be going in for last paclitaxel today.  Now the wait to see if I can get my op towards end of April. I don’t have a date yet but do have a date for scans. Had to move to The Marsden for scans hospital I was going to nearer home has been taken over for CV but just keeping everything crossed I can still get the op as triple negative will start growing back if it’s left too long.  

really looking forward to getting some energy back now that I’m done with chemo and have some fluff on my head even if it is white!

hope everyone else is ok. 

[KathCurtis]

Great news Lea, so happy for you!

 I still have quite a bit of chemo to go and hoping that I can complete it. Was strangely nice to come out to the hospital today. I enjoyed just walking down the road from car to the entrance! Such strange twists and turns our lives are taking!

love to all

kath

xx

[leaw]

Hi ladies how are we all doing? Guessing we’re all in 12 week isolation at the minute. How is everyone coping & managing to stay sane?. In other news had my lumpectomy 2 weeks ago and 2 lymph nodes removed, got my results back yesterday’s and it was good news, no cancer found at all, clear margins - al tough as the chemo was it had done it’s job 🙌🏻🙌🏻 Radiotherapy to complete now apparently it will be condensed into one week rather that 3 (I’ll just get a triple dose each day) then I’m going to be on tamoxifen for 10 years. Best news I’ve had since October - hope everyone else is doing great 👍🏻 x

[CureDars]

Thanks Cherryp and Purpletrunks. I have been lucky during chemo that my bloods have been good. Your replies have lifted my spirits from the point of view that- somebody cares. 
x

[Cherryp]

My haemoglobin has gone down every week since I started chemo and as it has dropped I have gotten more and more breathless especially on stairs and hills so it could well be your bloods.   

[Purpletrunks]

Oh Curedars, its just endless isn't it?! Could the breathlessness be low red blood cells/ iron? I suffer from that even if I am on the cusp of anemia and had it throughout chemo. I am sure that one of your test will highlight if you levels are a bit low here. 

Fingers crossed for you that it doesn;t delay surgery xxxxx

[CureDars]

Hi Purpletrunks,

Thanks for ALL the useful information today- and for giving us permission not to celebrate the end of chemo. ( in your reply to CherryP.)

Unfortunately, although chemo finished last week I have started with one swollen ankle and leg, and breathlessness on walking uphill.  GP has initiated various tests. Naturally I am worried and hope surgery won’t be delayed but it has certainly taken the edge off my celebrating. Any advice anyone?

x

[Purpletrunks]

and by the way ladies, have you seen the official advice come out regarding cancer folks and coronoaviris? 

One Cancer Voice, a group of charities which includes Breast Cancer Now, Macmillan Cancer Support and Cancer Research UK have issued the following guidance for people with cancer:

https://mcusercontent.com/68b588bc5847cde662b4ac613/files/8db9f41b-81bd-4b3f-acee-be58024601c0/One_C...

[Purpletrunks]

Hi CherryP

What a mixed bag of emotions for you!  I had all 6 of mine, but the scan was after no.5, and when I commented that perhaps it would shrink more after the 6th he said probably not because for some reason the chemo works more in the middle of treatment for some reason. So you have had the most important bit!

I too felt very mixed up about the next bit at your stage, so sending much love. 

I am starting to feel better after surgery and have gone back to work today. I work for myself so thats pretty easy to sit at home at my laptop. This last 13 days since surgery have probably been the most emotional and i have been processing the whole thing a lot - a lot of tears and they come at the slightest thing. I started a blog, which has really helped me. ( You can have a look here if you like: https://newshinyoldfaithful.wordpress.com/). I get my results next week on Thursday to find out if they got it all. So I could be sat here cancer free right now! But I am trying to keep it in my mind that they might need to go back in so that it doesn't feel like a blow if they do.

I also have an appt with my onc next week to get back on the Herceptin and plan the radiotherapy. Feels like this will never end!

Oh, and more positively I have signed up for some free coaching through https://workingwithcancer.co.uk/.  My mentor is 5 years free of BC, and its really good to get help with how my life might look afterwards. AND I got in touch with a new Breast Cancer Dragon boat team. Its nice to start thinking about how I might build myself back up on the other side of this. If you haven't read about Dragon boating for breast cancer survivors then take a look at this.... https://en.wikipedia.org/wiki/Breast_cancer_survivors%27_dragon_boating

And btw CherryP, don't be pressured into 'celebrating' the end of chemo if you don't feel like it. I didn't! Although I did mark the end of the cycle with a nice low key lunch. I am saving the celebration for when its gone, and this nightmare is over. 

xxxxxxx

[Cherryp]

Saw my oncologist yesterday and due to the problems with my fingers and toes continuing I am only going to have carbonplatin in my cycle 4. I I only get paclitaxel weekly that means tomorrow is my final chemo treatment! I feel a bit disappointed that I am unable to handle the last two paclitaxels but I don't want permanent damage and I still have surgery and radiation. Hopefully the fact that I've completed just over 7/8th of the treatment will mean I've done enough. Two less trips to the hospital is certainly good at this point in time with people looking to sneeze on us from all directions or so it seems sometimes. 

Felt a bit tearful as I enter the stage where we do less to get better. It's strange isn't it? It's nice that we are all getting towards the end and looking forward to the next stage and hopefully all being cancer free. 

[KathCurtis]

That’s so good to hear. And hopefully we will all get our energy back eventually 👍

xx

[CureDars]

KathCurtis,

Many thanks. Psychologically, I feel great to have got chemo behind me- as you will do in time. Physically, I’m not full of energy but  it is very early days. At least I’ve started thinking about things I’d like to do as opposed to jobs in the house I should do!

Keep on posting.

Clare x

[KathCurtis]

Fantastic Claire, so pleased for you. How are you feeling? Have a great day 

kath

xx

[CureDars]

Hi Purpletrunks,

How kind of you! Thanks. 
Just been writing in my chemo diary- “. A Sunday WITHOUT the usual Monday”! 
Tomorrow we are going to a lunchtime concert at The Bridgewater Hall followed by a meal. Our official end of chemo celebration!

How are you?

Clare x

[Purpletrunks]

Hey CureDars,

How does it feel to be finished? 

Lou x

[CureDars]

Hi Cherryp,

When my EC was reduced by 10% I was concerned I wasn’t giving myself the best chance but it reduced my tumour 40%. We really have to trust the oncologist and perhaps you will get some answers tomorrow. Great that there’s been some shrinkage and you are only halfway through. Tiredness/chemo fatigue has been a big problem for me, too. Final

pac for me tomorrow.

Let us know how you get on.

CureDars

[Purpletrunks]

Hey ladies, good to hear from you all. Fantastic news Leaw that you had a complete response! I had a complete in my lymphs, but tumour was determined! Although it did shrink to 1/8 of the size so I was happy with that. 

I definitely found more energy between chemo and surgery although the chemo side effects remained.. my bottom and mouth were very sore and the last of the ulcers is still hanging around 6 weeks later. 

I had my op on friday. I went for a wire guided therapeutic mammoplasty, and had a full node clearance too.

My 'new' boob is fabulous! Although it sits at least 10cm high than my old Faithful, so I look very funny without a bra. Its painful but totally manageable after chemo. I was out the same night and able to go to the farm shop yesterday. Can't lift anything so need help getting out the car etc, but otherwise I'm pretty ok, just tired. Just got the 2/3 week wait until pathology results now. They take a little more flesh on a mammoplasty than a lumpectomy so I'm hopeful, but also popped that they might have to go in again.

Hope you all stay well xxx

[Cherryp]

I’m on week 7 of 12 of 3 weekly paclitaxel/carboplatin cycles. They had to reduce my paclitaxel dose on Friday as I have numbness in my fingers and toes and thy don’t want to cause any permanent damage. Very sleepy a lot of the time now but recent mri showed some shrinkage so it’s heading in the right direction and I am meeting a surgeon tomorrow to discuss what’s next. 
Good to hear we are all still making it through despite the ups and downs of this thing. 

[CureDars]

Hi kath,

Good to hear you are making your way through chemo. With 1 more session myself I can’t believe how quickly it’s gone. I too, have found the fatigue increasing and am looking forwards to the weeks before surgery when there might be more ‘energy in the bank’! This forum has helped a lot and now I’ll be looking at the helpful posts re surgery. Keep smiling!

[CureDars]

Hi Leaw,

Delighted you’ve had such a good response. I have one more chemo and then lumpectomy in six weeks - April. Let’s hope we both get those good margins they talk about.

[ClaireL]

Hey guys!

It's great to hear how well you are doing! I'm really pleased for you!! 

I've just finished week two of radiotherapy and have about 8 sessions left to go! It's gone quickly but I'm a bit fearful of being 'done'.

I'm currently just finishing off 36 cupcakes for my little boys third birthday party tomorrow. That's one of the last jobs for the night! 

Hope everyone else is doing ok too xx

[KathCurtis]

Hi Leaw

so pleased to hear you are out the other side of chemo and have had a good response. You are on the downhill now!

i am on 3rd chemo round of 7 and doing ok, just getting tireder. Due to finish in June. 

How is everyone else?

love

kath

xx

[leaw]

Hi everyone, just wondering how everyone is doing? Where is everyone upto? I’ve just had my last mri results following chemo completion and my dr was very pleased that there is no sign of cancer on the mri (lump has gone) do I’m booked in for a lumpectomy on 9th March to remove surrounding tissue, then in April will start 3 weeks of radiation. Hope your all feeling ok x

[Shi]

❤️Oct thread ❤️ you are doing amazing keep your eyes focused on the bell in the unit and get ready to ring the heck out of it and the bell in the rads unit too 💪💪💪 feel happy as hair comes back be joyous for each new day ❤️ and if you get chemo curl, get some mini straighteners 👍 you are always beautiful you be proud and be kind to yourselves ❤️💕💕✨✨Shi xx

[ClaireL]

Hey everyone,

Firstly, you're all doing amazingly. This whole situation is crap no matter what positive mindset you have and eventually it wears us all down. 

I finished chemo a few weeks back. I then caught the husband's latest viral bug and ended up in hospital with a temperature of 41°C. Get through all that and a pesky bug knocks me down!! 

I'm all recovered from that and will start radiotherapy on Tuesday. 18 sessions, one a day except weekends. I'm also starting to miss the chemo. I knew it was blasting whatever was left and now that has gone I keep thinking, it'll be back now. 

Stupidly though, what gets me down is my hair. Don't get me wrong, I'm not at all a girly girl and I wasnt overly attached to it because it was static and unstylable most of the time! However, it's the most obvious reminder that I'm still here, fighting, trying to get on with life, feeling crap about the world, trying to build a life for my boy and yet feeling mega pissed off this even happened to me. To any if us. 

Tomorrow is a new day. It's still a windy, rainy day but it's another one we are getting up for and telling this crappy disease to do one. 

You're all superstars, and I thank each and every one of you. 

Lots of love xx

[KathCurtis]

Hi all

good to hear how everyone is doing. It isn’t straight forward for any of us it seems, and the past few weeks i have been crying at the drop of a hat. It’s still shock and grief. But physically i am recovered well from mastectomy and now fitted with a prosthetic which gives me more confidence even in tighter clothes. I just had week 5 chemo (three week cycles of Carboplatin and Paclitaxel followed by 2 Paclitaxel alone, then i will have three cycles of FEC). I find Carboplatin unpleasant but i am not sick, and the injections for white blood cells can cause pain so i take paracetamol. It’s all a bit crap but better than not having anything to treat the cancer, and i am beginning to think summer will come and this will stop. I am sending love and hopefulness to you all. 
kath

xx

[CureDars]

Hi Cherryp,

It must have been so disappointing to get that news. We rely on the oncologists to know what to try next. The waiting for results is awful but all we ladies know that! 
My recent MRI showed little reduction in the actual breast tumour but cancer disappeared from lymph nodes. Will find out this week if there’s any change of treatment.

Good luck tomorrow. 😊

[Cherryp]

I was later i October too and then as EC didn’t do much to my tumour size I got Carboplatin added to the Paclitaxel and had to move to weekly so as of last Friday I am halfway through my 12. I have an MRI tomorrow to see how things are. Fingers crossed. 
hope everyone else is coping ok. 

[CureDars]

Hello October ladies,

I was a late October starter so not finished yet. 3 more Paclitaxel.

Purple Trunks- I think it must be very normal to feel “not very happy” as you put it. We all can’t wait for chemo to be over but then anxiety about the surgery must takes over. (Then there’s radiotherapy.)  You’ve had a long haul but you did it! Congratulate yourself- and you encouraged others on the way. People try to be understanding of our situation,  but like most things in life true realisation only happens if they’ve been in our shoes. 
Will be thinking of you. Let us know how the surgery goes. 😄

[Emzlew]

Hi! 

Yes, I had my last T on the 7th.  Still feeling a bit ropey but was so pleased to finish my injections last night.  They always make me feel worse.  Have awful taste, my mouth feels like it's been sat in a bath for hours and give wrinkly.  My nostrils are bleeding most of the time and my fingers are so so sore!! But it's the last one hopefully so fingers crossed things ease soon.

I have an appointment with a breast nurse on Thursday to discuss my options re surgery as I'm still so unsure?! 

My surgery is penciled in for the 16th march.  

I'm planning on making the most of the next couple of weeks without any treatment.  

Going away next weekend with the smalls and then the following weekend I'm going away with my wife.  Just trying to keep busy in the coming few weeks pre surgery.  

My fitness has dropped dramatically so I'm hoping to get back out there and gain a bit back before I'm out of action again.  I hate how all this has made me feel.  But I'm determined not to let it consume me.  It's so bloody hard and although I hated chemo I'm now scared I'm not on it... 

It's all such a mind game.   

But just remember, it's ok to not smile.  It's ok to not feel positive.  It's ok to have down days.  Just be kind to yourself.  You have every right to feel any feeling you are feeling.  Just don't let it take over.. 

You've got this! 

We've got this! 

We are doing this! 💪❤️🥊 xXx

[Purpletrunks]

Hey ladies, how are you all doing? Anyone else finished yet?

My lumpectomy and ANC is in 13 days time and I'm starting to turn my energy and attention to that. 

I'm struggling a bit to feel happy.. mostly I'm feeling physically good but my mouth has puckered up horrendously and my heart hurts when I do any cardio exercise. Just so tired of having this hanging over my head. People say they get that it's still tough but I'm not sure they get that it feels just as tough, if not worse. 

Hope you are all ok xxx

[jasmine1897]

Thank you everyone for your kind messages. I have re-written this message a thousand times but I think all I need to say is thank you. X

[Emzlew]

Jasmine..

I am so so sorry to hear of your devastating news.  Sending you so much love and strength at this ridiculously difficult time xx❤️xx

[CureDars]

Jasmine,

Have only just seen your Thursday post. My condolences to you and your family. You were able to support her and that must be a great blessing to you. Look after yourself in the busy days ahead.

[Cherryp]

So sorry Jasmine. She knew she was loved to the very end and you have been such a kind and thoughtful daughter. Thinking of you and your family. xx

[leaw]

So sorry to hear this jasmine, nothing we can say to make this easier. Your mam fought to the end with you all supporting her at every step. Thinking of you all, god bless x

[Purpletrunks]

Oh Jasmine . Much love to you and your family, such a devastating loss. xxxxxxx