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February 2020 Chemo Starters

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Re: February 2020 Chemo Starters

Hi Vasanthy, they tell you when to breathe and I can hold it ok, the tricky thing for me is not moving shoulders or back when doing deep breaths- I find I have to be v relaxed to do this but it is not an inherently relaxing situation!! It is really worth practising the breathing and maybe doing mindfulness or meditation practice, also getting into a positive frame of mind before treatment. I have started singing loudly in the car on the way over and say positive affirmations to myself over and over.  I have learned to do it q quickly but the key has been managing my worries and mood! The radiographers are good at helping and tell you when you have breathed in enough, some places have lines to watch which show you you have breathed enough- I don’t have that.

good luck with it! 
thanks for your reply Caead 😊

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Re: February 2020 Chemo Starters

That’s true  Vornsta it can be so different for each of us. It is good to share all. I feel for you. Mine is also left side but I don’t need to hold my breath. I guess different machine or location of what they are treating. I found it difficult to hold breath when I had MRI so I can appreciate how hard that must be for you. I am feeling a bit tired each afternoon. My treatment is mostly at 9:15 so I keep going until I need a rest and that’s probably me done for the day. I understand it can take a couple of weeks to feel the full effects so am preparing myself for that. 

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Re: February 2020 Chemo Starters

Hi everyone 

 

Tracy- happy to hear your surgery went well and your are pain free. 

vornsta- Ah is taking deep breath is difficult or it should be taken at a particular time. I have my appointment on Aug 12 . Hope rest of your treatment goes well without much side effect. 

Daisy- has your breathlessness and pain improved ? 

cead- happy to heat radiation is going well 

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Re: February 2020 Chemo Starters

Glad rads are good for you Caead. I have left sided bc so have to do deep in breaths and hold. The 1st session was really hard- one arm went numb and it took ages. I got more tired and stressed as time went on so found it harder and harder to do consistent breaths. Got through it eventually. The next 3 I prepared myself better mentally and was able to relax into it better. Arm still goes numb but it is much quicker so I can manage. I find rads make me really tired 1-2 hours afterwards so have found I should not do any walks or anything straight afterwards but am all right the next morning to so exercise pre rads. We are all different but I thought it wd be helpful to share my exp. I heard from lots of people that rads was really easy but I find it hard. I guess if you don’t have left sided treatment it will be much easier.

have you got yr ct result Daisy and are you feeling less tired?

Vxxx

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Re: February 2020 Chemo Starters

Hi all, glad to hear the op went well Tracy. Another stage of treatment ticked off. Daisy, I hope they can help to relieve your chest pain. 
They said it could take up to 4 weeks after my radiotherapy planning appointment for the sessions to start. Well it took 6 but I am now under way. I have had 2 radiotherapy sessions just 18 more to go. Nothing to it at the moment just like having a scan. It took about 8 minutes after I was lined up. I will let you know if any side effects. My oncologist wanted me to start the hormone therapy at the same time. I could be hit with SE from both🙄.

Best wishes to all and I hope you are finding things to do that make you smile. 

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Re: February 2020 Chemo Starters

How did Radiotherapy go Vornsta? 

Love Daisy xxx

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Re: February 2020 Chemo Starters

So glad to hear your news Tracy and that you are pain free. Have you stayed in ,? 

Still no results from the ct scan but had a phone call to go in for another radiotherapy scan on friday as they feel it would be a better treatment to aim at the chest wall as awell as under my arm.  Bit rough today with the chest pain still 

Love Daisy xx

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Re: February 2020 Chemo Starters

Thanks Daisy. It seems to have gone well. I’ve now got two much smaller boobs after a five hour op. Surprisingly pain free already and surgeon hopes that he has got all of the tumour out but we’ll just have to wait and see. 
How are you feeling now? Any improvement or results from your CT scan? Sending you hugs and strength xx

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Re: February 2020 Chemo Starters

Hi Tracy 

Just wanted to say hope operation has gone well today and sending you a virtual hug.

Hope you are all ok 

 

Love Daisy xxx

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Re: February 2020 Chemo Starters

Hi Vornsta 

Had bloods done they were ok . Yes will give them a ring if havent heard by middle of the week  

Take Care

Daisy xxx

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Re: February 2020 Chemo Starters

Dear Daisy,

thank you for your lovely message! I hope you feel better soon. You cd call the BCNs to get them to chase CT result; is there any anaemia?

Dear Tracy, good luck for Tuesday!

love and good wishes to everyone

xxx

 

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Re: February 2020 Chemo Starters

How are you getting on Thomaschix, charisma and vasanthy ?

Lots of best wishes

Daisy xx

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Re: February 2020 Chemo Starters

Hi Vornsta 

Just to wish you good luck with radiotherapy on Monday.

Hope you are keeping ok 

Love Daisy xxx

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Re: February 2020 Chemo Starters

Hi Tracy

Thank you for replying and for the vitual hug.

I will be thinking of you on Tuesday and sending you lots of love. Glad your new surgeon is nice and great to hear that you will be having less invasive surgery.  So then hopefully the recovery for you will be much quicker.

Love 

Daisy xxx

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Re: February 2020 Chemo Starters

Hi Daisy,

Sorry to hear you are having problems since your surgery. I hope the docs can get this sorted for you quickly. Sorry I can’t help with any similar experiences. Sending you strength and virtual hugs for everything you’re going through xx 🤗 

 
I will have my op on Tuesday. My original surgeon has been quarantined so I have a new one who is really nice. They are going to try to do a breast conserving op on the left and a reduction on the right although I may have to go back for a mastectomy if pathology shows anything left behind. 

Best wishes and hugs to everyone in the group xx T

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Re: February 2020 Chemo Starters

Hi Everyone 

Has anyone felt short of breath and so tired after Mastectomy and Axillary clearance. 5 weeks ago I have had ct scan to check out breathlessness awaiting results. 

Just not sure if im expecting to much 

Love

Daisy xxx

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Re: February 2020 Chemo Starters

They do a scan just to line up where the radiotherapy should go. It is not a scan to see how things are, is that what you mean? Let me know if not clear

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Re: February 2020 Chemo Starters

Hi vornsta

 

did they take scan.

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Re: February 2020 Chemo Starters

Hi everyone,

I start radio on monday. Just wanted to share my radiotherapy planning appt experience in case it helps. You have to be naked from waist up for quite a long time while they measure you, ct you and get you into the right position. The room is not esp warm so if you get cold easily make sure your bottoms are warm,and that you can fold down your waistband so they can see your belly button for the measurements. I also had a warm wrap I put over my legs. I did need to do breath holding as left sided cancer so this may mean it took longer. 
good luck everyone and take care xxx

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Re: February 2020 Chemo Starters

Yes daisy 

 

having an appointment on aug 12th. I also had the shoulder pain before surgery but after surgery it went away. And yes I also feel some hardness near my surgery scar and my mind was like ah has it come back and checked with my dr and she said it will be like that but in course of time it will heal. So check with your dr. 

All the best for radiotheraphy

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Re: February 2020 Chemo Starters

Hi Vasanthy

Sorry to hear about having to stop the oral chemo. Do you have a meeting planned for radiotherapy to start ?

I understand its all such a worry and sending you a vitual hug 

 

Love Daisy xxx

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Re: February 2020 Chemo Starters

Hi all

Hope everyone is doing ok 

 

I started my oral chemo last Monday but after 2 days I started experiencing rashes on both of my shoulders. Consulted with dr and she gave some antiasthmines and asked me to continue with the tablets but the rashes started spreading and itching also. So onco told me to stop and go for radiation . Feeling weird and worried 

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Update

Hi Everyone

How are you all getting on ? 

Just an update from me .I went to see oncologist yesterday as im still experiencing the burping and shortness of breath he is sending me for a Ct scan on Thursday. Following mastectomy and ANC im still experiencing some pain also in my right shoulder. 

Sorry if this sounds a bit daft question as anyone else got a nobbly bone on top  above there mastectomy scar. I think it is my rib which would have previously been covered by breast tissue.  

I also have scan for planning for radiotherapy on Thursday afternoon .

That will be for three week mon to friday starting in about 4 weeks 

Then it will be oral carbabetine  for 8 cycles. I dreading that after all the problems of iv i hope it will be less side effects . 

The  Axilla node that they couldnt reach in surgery is 1.5cm as it was stuck to the vein . This does play on my mind as they said they give rads to zap it and then chemo to try to prevent recurrence  but there is no follow up scans to check progress which i find strange.

Keep safe 

Love Daisy xxx

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Re: February 2020 Chemo Starters

Hi Everyone

How are you all getting on ? 

Just an update from me .I went to see oncologist yesterday as im still experiencing the burping and shortness of breath he is sending me for a Ct scan on Thursday. Following mastectomy and ANC im still experiencing some pain also in my right shoulder. 

Sorry if this sounds a bit daft question as anyone else got a nobbly bone on top  above there mastectomy scar. I think it is my rib which would have previously been covered by breast tissue.  

I also have scan for planning for radiotherapy on Thursday afternoon .

That will be for three week mon to friday starting in about 4 weeks 

Then it will be oral carbabetine  for 8 cycles. I dreading that after all the problems of iv i hope it will be less side effects . 

The  Axilla node that they couldnt reach in surgery is 1.5cm as it was stuck to the vein . This does play on my mind as they said they give rads to zap it and then chemo to try to prevent recurrence  but there is no follow up scans to check progress which i find strange.

Keep safe 

Love Daisy xxx

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Re: February 2020 Chemo Starters

Artycart we all have a vivid imagination after chemo 🤪🤪🤪🤪 glad you are prepping for before and after 👍 hand cream, lip balm and anosol (the drugs can make it feel like getting a backwards pine one out) 😲 Sorry if tmi, but just in case thought you could add to your overnight bag 😁💕💕Shi xx

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Re: February 2020 Chemo Starters

Hi Tracy

Glad to hear that you have a date for your operation. It will soon all be over and you can get on with recovery. 

The actual healing is quite quick i stayed in overnight too. 

Im just experiencing some pain  in my shoulders today and just feel so tired still. I think i may be expecting to much to soon which is me all over. 

Love 

Daisy xxx

 

 

 

 

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Re: February 2020 Chemo Starters

Thanks Shi,

I am blessed with a very vivid imagination but it can also be a curse 🤪 

I will be in overnight And will have drains too. My other half will be at home to look after me and I’m sure will make sure I do my exercises 😃 We have just been told we can go out and about to shops etc here but I am back on lockdown until I have my op xx

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Re: February 2020 Chemo Starters

Artycart ❤️ I know it’s hard and mind goes 🤯🤯🤯 trust in your team ❤️ Step by step remember and you’ve done the chemo, now this is next hurdle, get as prepared as you can for op and for afterwards, I used sticky dots on the door to monitor how much my reach exercise improved day by day after op when I started exercises, gave me little triumph each day 👍 are you staying in overnight and having drains? ❤️💕💕Shi xx

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Re: February 2020 Chemo Starters

Hello everyone,

How are you all doing?

Daisy - I know how you feel. My mind is always racing away and sometimes I imagination takes me to good places and often it takes to bad places but I’m keeping my brain occupied with lots of distractions s much as I can. I hope you can start to feel better soon xx

Vasanthy - How are you feeling on the Xeloda?

Thomaschix - Are you getting on ok with the new chemo drug?

I’ve got my mastectomy date on 4th August. The surgeon said the tumour has fragmented into lots of pieces so the overall size is still the same but there are lots of little pieces left so until they do the pathology they won’t know what the situation is. They are not seeing anything visible in my lymph nodes but again will need to see hat the pathology shows. I’m pretty terrified about that but nothing to be done about it and will no doubt need radiotherapy afterwards. 
Hugs to all Tracy 

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Re: February 2020 Chemo Starters

Hi vasanthy

Hows the oral chemo treatment going,? Hope its not to bad for you.

Tracy

Hope your appt with anaesthetic has gone ok and do u have a date for surgery 

Thomaschix

Hows are you doing post surgery ?

 

Vornsta and calied how are you getting on? 

Ive not felt to great with increasing tiredness and just short of breath at times. The hot flushes are driving me mad too. Just trying not to get to anxious but im finding it difficult to stop mind from racing in front. I think i will be better when i can drive as it will give me a bit more independence. Really struggling in missing our dog too. She was like my shadow . 

Love 

Daisy xxxxx

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Re: February 2020 Chemo Starters

Hi Vasanthy,

I hope the oral chemo doesn’t have too many side effects and that it all goes well. 
I will have an anaesthetic assessment tomorrow and surgery is planned for the beginning of August once I’ve spoken to the surgeon.

How is everyone else getting on now? Hope you’re all doing ok xx

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Re: February 2020 Chemo Starters

Hi all

 

hope everyone doing well

 

Tracy - got your date for surgery? 

Daisy- hope you are recovering well from surgery and did you got your plan regarding further treatment. 

 I have started my oral chemo from today. Taking 1500mg of xeloda twice daily. It’s for 8 cycles ( 2weeks on and 1 week off)

Hope it goes well. 

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Re: February 2020 Chemo Starters

Hi Daisy,

Thank you for the advice about surgery. Strangely I’m keen to get on with it but knowing me I will find it more difficult after it’s done. You’re right... it’s a nightmare trying to buy things that really need to fit properly online. I think I’ll need to order about four sizes to hopefully find something that fits. 
I have always suffered from anxiety so I have probably developed lots of coping mechanisms including a lot of distracting myself with constantly reading or arts and crafts when I’m not working. I’m also finding that I am very weepy and down some days and not so bad others and I wouldn’t be surprised if the menopause has an effect on that too. 
I have thought a few times during this that I need to speak to a counsellor - I’ve had counselling before for anxiety and stress and it was so helpful just to have someone to talk to who wasn’t connected to you. I totally get how you feel. I’m not used to being an ill person. I’ve always been quite healthy and independent and it doesn’t come naturally to need help.

I have everything crossed for you that the  oral chemo will be a lot easier on you than the others were. Sending hugs xxx

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Re: February 2020 Chemo Starters

Hi Tracy

Glad you are doing ok and that you have a plan for surgery. The actual surgery i didnt feel was to bad . The worst part for me was the drains. Pain was managable. I stayed in over night. 

They will give u a front fasting bra which im still wearing now as its more comfortable than the one i ordered from Asda. It hard at moment due to Covid in going shopping as we normally would.

Ive not been feeling to great in an emotional sense.  I have never suffered from Anxiety before but im finding it hard at the moment as i just feel so tired all the time and very weepy . ( Not sure if its the medically induced menopause as well which isnt helping) Also im so nervous about starting the oral chemo after side effects previously. I hate being like this especially in front of my children . I just want to feel like me again .

I have stopped googling and going on any other forums for TNBC as i think im making myself much worse. Any other tips for keeping mind in one piece gratefully received. 

You will be fine through surgery and it will soon be another step completed.

Sending virtual hug

Love 

Daisy xx

 

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Re: February 2020 Chemo Starters

Hi Daisy, Hi everyone,

How are you feeling now? It’s been such a tough time but you’re doing so well as are we all. We should all be wearing capes 💪 !!
I’m doing ok this week. I have my pre anaesthetic Assessment on Tuesday and expect my surgery at the beginning of August. I contacted my BCN who gave me some info and put my mind at rest that I would be top priority to get surgery as soon as possible. I was asking her about post surgery bras as I’m finding it very difficult to find anything suitable. If anyone has any recommendations that would be great. The problem I’m having is  that mastectomy bras and soft bras don’t come in larger cup sizes 😠  

The BCN also said to wear cotton pants or they would make me take them off to go to theatre! Which did make laugh. No lacy underwear allowed.

Hope you are all doing ok xx T

 

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Re: February 2020 Chemo Starters

Thank you shi for all the kind words and support. Its much appreciated.

How are you all doing?

Love 

Daisy xxx

 

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Re: February 2020 Chemo Starters

Daisy 👭 exactly, if you are given the information you can start to plan how you step through it, you’ve already stepped through treatments brilliantly, don’t forget that 👍 this is just a lap of honour 👍👍to do to give it an extra whammy 👍 you are amazing and stronger than you know you are ❤️ Now please be kind to yourself ❤️ Big hug 💕💕Shi xx

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Re: February 2020 Chemo Starters

Thank you so much shi.

Really appreciate your reply . Will contact the nurse to ask about the cape /radiotherapy 

Just trying to take one day at a time as i think im getting anxious due to lack of info  xxx

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Re: February 2020 Chemo Starters

Daisy ❤️👭❤️ Please do use the number on here and speak to a nurse, They will be able to help with questions you are wanting to ask with your bcn not supporting you ❤️ Step by step and one day at a time daisy ❤️ Be gentle with yourself you’ve had a lot on ❤️😘💕💕Shi xx

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Re: February 2020 Chemo Starters

Hi

 

Daisy- still I don’t have a clear picture. She said it will be for 6-8 cycles . My radiotherapy will be after this chemo. I know how you feel as I am also going through the same. But as per Onco it increases  the percentage of non recurrence so I am thinking of going for it. My wish is that  the side effects will be less. 

Vornsta congrats on finishing your chemo. 

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Re: February 2020 Chemo Starters

Hi Vasanthy

Sorry to hear more chemo too. Did the oncologist say how long oral chemo is for? I just wasnt sure if it was before radiotherapy or after ? 

Vornsta

So glad to hear that chemo is finished for you. Well done and wishing you well for the radiotherapy.  

Tracy 

Glad to hear your scan went well. Have u got date for surgery yet ?

Thomaschix 

Hows the recovery going and  hope the exercise is going ok ? 

Hope everyone else is also doing ok sorry if not mentioned you in name.

Ive not posted as not felt to great really struggling with the thought of more chemo . My breast care nurse isnt the most helpful really and doesnt return calls or seem to know about what will happen next. Ive rang oncologist to ask for appt which is on 27th . Just feel like ive been left to get on with it all and im struggling mentally to get my head around it all. Im normally such a positive person but cant seem to pick myself up at the moment. Im still getting discomfort from surgery and some back pain . But if i had a choice i would do surgery anytime instead of the chemo. I know with Tnbc that its the only choice we have but that just scares me silly . Im so scared . Sorry to sound so negative as i really dont want to feel this way. My daughter is due to go to university in sept as i was so hoping to feel better by then. 

Love 

Daisy xxx

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Re: February 2020 Chemo Starters

So sorry to hear your news Daisy and Vasanthy. Rubbish to face more treatment but you can do it 💪

Hope yr scan results are all good Artycart- sounds positive so far.

I finished chemo today and as I had surgery beforehand I have no idea if it has worked or not. Just need to keep the faith that it has worked. Radiotherapy, zoledronic acid and aromatase inhibitors next.

I rang the bell and had my PICC line removed - at the beginning the end felt so far away.  Although you may have a little detour on your treatment journey you will get to the end of it, they know what they are doing these oncs.

best wishes to everyone 
Vxxx

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Re: February 2020 Chemo Starters

Hi Vasanthy, I don’t have a date yet for surgery but the doctor who did the ultrasound said things looked good and all she could really see was calcifications which would not have been affected by chemo. I hope to have my surgery very soon though as my surgeon said it would probably be fine in July xx

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Re: February 2020 Chemo Starters

Hi Tracy 

 

have you got your Apointment for surgery. Hope your scan went well. 

 

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Re: February 2020 Chemo Starters

Hi everyone,

Daisy and Vasanthy - I’m so sorry that you have both had disappointing news from your pathology results. With TNBC I guess we all have a higher chance of having to have more chemo as there are no other drug treatments available. I’m preparing myself for something similar too. I’ve already been told I will need radiotherapy after surgery. 
I am thinking about you all and sending hugs and best wishes xx T

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Re: February 2020 Chemo Starters

hi daisy 

yes I have to have radiotherapy also. 

once this oral chemo finished then I have to go for radiotherapy . 

As per onco it’s an option for me as we don’t have any other treatment once radiotherapy is over and it increases the percentage of non recurrence  She has given me 3 days to think and come back on Monday . 
hoping this oral chemo will give less side effects. 

 

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Re: February 2020 Chemo Starters

Hi Vasanthy

I really know how u feel. Just feels never ending.  Im Triple negative too.

Do you have to have radiotherapy too ?

Have u started xeloda yet ? 

Thinking of you and sending you a virtual hug .

Love

Daisy xxx

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Re: February 2020 Chemo Starters

Hi Daisy

sorry to hear it wasn’t better news. Did they give any indication as to what regime of chemotherapy you might need?

hopefully you can hold in mind that you’ve got through the chemo once and can do it again!!

how are you feeling from the surgery? 

xx

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Re: February 2020 Chemo Starters

hi all

 

hope everyone are ok. 
Got my report today. Me also like daisy not happy with that. 

They removed 10 lump nodes. Out of that one had a small micrometassis of .5mm and in the tumor there was some residual cancer cells . 

as I am TNBC my onco told me that I have to oral chemo upto 6-8. Cycles ( 21 weeks each)

 

each day I have to take tablet called xeloda. Ah I feel so dejected.

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Re: February 2020 Chemo Starters

Hi Everyone 

Hope you are all doing well.

Im not feeling to great after pathology results yesterday they feel that i will need more chemo and radiotherapy. Awaiting call from oncologist as not sure yet what plan is all i know is   There is one node left that he couldn't get in surgery . He is not sure if cancerous or not.  He removed 9 lymph nodes 6,/9 were cancerous .

Im just dreading the thought of more chemo after all the problems that i have had .

I was praying i would just need radiotherapy. 

My head is all over the place 

Love

Daisy xxx