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October 2019 chemo starters

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Re: October 2019 chemo starter

CherryP,

That’s great news. You got the results quickly. Build up your strength and keep well for the rads.

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Re: October 2019 chemo starter

My dreams came true. Surgeon rang today and my tumour shrank from 30mm to 14mm and of that only 20% was active cancer so chemo did work well even if I am still struggling with my toes. The margins were clear and so was my lymph node that they removed so just radiation to go now. Starting to think of myself as cancer free now. Is that wrong? 

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Re: October 2019 chemo starter

🥰 good night all xx

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Re: October 2019 chemo starter

Hi kath ❤️ Beautiful photo of Luna ❤️ She’s growing up 😁 but still got the puppy sass 😂🤣😂🤣 💕💕Shi

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Re: October 2019 chemo starter

Kath,

You cheered us all up with your photos a few months ago. Thank you.x

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Re: October 2019 chemo starter

70A72497-0B4B-4494-A898-F214D3543BE2.jpeg

Sort of got it - just had to make image small, but it’s upside down! 

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Re: October 2019 chemo starter

Hi Shi

Good to hear from you. How are you doing?

Luna is beginning to get the hang of how to be a good doggo and is a sweet silky seal of a puppy most of the time, except when she is pulling up my plants in the garden 😖. I am trying to attach a photo but not having much success, will try in separate message

love

Kath

xx

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Re: October 2019 chemo starter

Kath, hows that gorgeous puppy of yours doing? 💕💕shi xx

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Re: October 2019 chemo starter

Very good to hear you are putting surgery and chemo behind you, Thank you for encouragement Curedars 😘👍

And it all sounds very normal and familiar to me ajatron! Some days our sense of humour just can’t be found.

love to all

kath

xx

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Re: October 2019 chemo starter

Hi all

 

i had to finish my Paclitaxel treatment early due to peripheral neuropathy which was a bit of a shock to say the least. 

i have just started 4 weeks of radiotherapy which is fine but in the current climate a bit of an additional worry. Having herceptin injections too and also on tamoxifen. Quite the roller coaster. 

mood is all over the place. Hair is growing back at a rate of knots!!

 

is it normal to feel strange and in limbo? I’ve just upset the family as they were all gently teasing me about general stuff and I didn’t take it well. Normally I’d join in on the joke but not today. I feel like I’m operating it two parallel worlds. It’s very odd. 

much love to all. We are all getting there in our own way xxx

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Re: October 2019 chemo starter

Hi Kath,

Good to hear from you-still in chemo land! No wonder you burst into tears with all this extra anxiety around Covid. You seem in fair spirits overall and the weeks will pass. I cannot believe it is only 53 days since my last chemo and 28 days since surgery but the pre- cancer person is returning! Mentioning this to encourage you. x

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Re: October 2019 chemo starter

Hi all

Good to hear how everyone is doing. It seems like treatment can be unexpectedly never ending, but as I am also tn it’s good to be forewarned. I have two more EC rounds over next 4 weeks and should then be done - apart from bone strengthening meds once every 6 months for 5 years. I find myself mostly cheerful but then at times tears unpredictably overcome me. I am definitely still processing the shock of diagnosis and treatment impact, and CV isn’t helping!
Working from home with a little one and bc sounds hugely challenging Claire, that husband needs to get on board and share the strain! 
Wishing us all calmer waters and many sunny days ahead.
Love

Kath

x

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Re: October 2019 chemo starter

Hi all,

 

Glad to hear that everyone is progressing well in their own ways. I hope we can all stay on a good path. 

 

I'm triple negative too and have just been put on tamoxifen for 5 to 10 years. I had a slight response for estrogen so they are trying it out. Apparently there's nothing to lose by being in it and so as long as my side effects are minimal that's my plan. 

 

I'm struggling a bit with being home, looking after my three year old and trying to work too. It's all just chaos at the moment. My husband doesn't particularly want to help either. 

At least we have had good weather and we are lucky to have the garden to play in. 

 

Here's hoping life can return to normal soon! 

 

Sending love x

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Re: October 2019 chemo starter

I’m triple negative too. It really hadn’t occurred to me that the histology might suggest further treatment after radiation so thanks for that. Always better to be forewarned! 

Glad your radiation is going ok PurpleTrunks. Just rest assured that the drugs after are giving you more insurance. 

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Re: October 2019 chemo starter

Purpletrunks,

Good that your rads have started. Another hurdle will soon be achieved. 
I don’t know anything about the drugs you are taking but presume your oncologist/surgeon believes this is the best treatment to prevent recurrence. 
After being under the impression for 7 months that there was no further treatment for me after radiotherapy- being triple negative- the surgeon said that the histology results showed that their might be some MARGINAL benefit for me to go on a drug beginning with L for 10 years. I was rather surprised! Realising we all react differently I do hope your side effects improve very soon. 

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Re: October 2019 chemo starter

Cherryp,

Delighted that you are so cheery. Impressed that you are doing the exercises already! Just concentrate on getting as strong as possible for the rads.

 

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Re: October 2019 chemo starter

Gorgeous post CherryP. So pleased that your lumpectomy went well 😊😊

 

I started radiotherapy on tuesday. I am having reduced sessions due to CV19, but I'm ok with that. So my last is next thursday. I wish I felt like I was on the home straight... herceptin and pertizumab until January for me. They are knocking me a bit, so I'm feeling  little fed up about how crap this year could be. After surgery I was out walking up my hill every morning, and the h&p have stopped that. My white bloods are a bit low too, hopefully as a hangover from chemo. I'm hoping they wint be low all year!

 

But, in keeping with all your gorgeous positivity, today I am grateful for:

 

My family and especially my children.

The sunshine!

That I can still go out walking each day

My treatment hasnt been stopped.

My new boob is great, surgeon did  fab job.

 

😊😊😊😊

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Re: October 2019 chemo starter

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!

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Re: October 2019 chemo starter

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

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Re: October 2019 chemo starter

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 😀

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Re: October 2019 chemo starter

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

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Re: October 2019 chemo starter

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 🍷🍷💯🎂😝😝

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Re: October 2019 chemo starter

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

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Re: October 2019 chemo starter

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??? 

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Re: October 2019 chemo starter

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!

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Re: October 2019 chemo starter

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 
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Re: October 2019 chemo starter

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

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Re: October 2019 chemo starter

Purpletrunks,

How are you doing?

Thanks for the link.

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Re: October 2019 chemo starter

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.

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Re: October 2019 chemo starter

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!

 

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Re: October 2019 chemo starter

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. 

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Re: October 2019 chemo starter

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

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Re: October 2019 chemo starter

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

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Re: October 2019 chemo starter

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

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Re: October 2019 chemo starter

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.   

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Re: October 2019 chemo starter

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

 

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Re: October 2019 chemo starter

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

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Re: October 2019 chemo starter

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...

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Re: October 2019 chemo starter

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

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Re: October 2019 chemo starter

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. 

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Re: October 2019 chemo starter

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

xx

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Re: October 2019 chemo starter

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

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Re: October 2019 chemo starter

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

kath

xx

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Re: October 2019 chemo starter

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

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Re: October 2019 chemo starter

Hey CureDars,

 

How does it feel to be finished? 

 

Lou x

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Re: October 2019 chemo starter

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

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Re: October 2019 chemo starter

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

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Re: October 2019 chemo starter

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. 

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Re: October 2019 chemo starter

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!

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Re: October 2019 chemo starter

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.