Hello ladies, hope you don't mind me gatecrashing your thread, but I've just read through it all and it's made me feel so much better, your all so nice and posative

I was diagnosed with triple negative BC in June, I am on my 5 of 8 cycles of chemo, these last four being Carpoplatin and paxataxil, there breaking down the paxataxil to every week, i have my last chemo on 6th January and although we shouldn't wish our lives away, I can't wait, after that it will be surgery and radiotherapy, I have three lymph nodes under my arm and two lymphs under breast, but on last scan the two under breast have cleared, I'd like to ask if any of you on paxataxil oy carboplatin have had fuzzy head, I can't explain it but fuzzy slight dizzy head, I'm at day 10, my other cycle I felt so much better by day 10, it's not really bad but just annoying as I can't drive while feeling like this. Again lovely to read all your posts and really hoping your all feeling well, xxx

Hey Davia

Of course not, welcome to our group that no ones want to join haha!  I was diagnosed in August so just had my 3rd course on Tuesday.  Not feeling too bad at the moment, fingers crossed it stays that way.  I have 1 more of EC then i go onto the carbo / paxo and paxo weekly.  Hope there are no major side affects of these.  How you doing on these drugs, just the dizzyness.  

I have in my lymph nodes too so will have to have all of them out, little worried about the opp but one day at a time eh.  I'm also waiting on my brca test, guess they will send a letter confirming yay or nay.

Yeah i could drive for a few days after my second one, felt like i was on drugs all week!

I managed the cold cap on Tuesday, but hair is thinning quite a bit so not sure if I'll carry on .

Hugs

xx

Claire I read on another site that after chemo you can get joint bone ache, maybe it's that, hope it clears quickly for you xxx

Mitch, last chemo today, woop whoo,  hope your out of there quickly, bribe them, get me done quick and I'll give you cake lol xxx

Sue, i hope the tiredness goes off, i find after doing anything, short walk, house work, I'm pooped and need a nap, xxx

Had my drain out on Wednesday, it didn't hurt, I was expecting it to but it came out no trouble. It took me 8 days to get over the anaesthetic, I felt terrible, very low no energy at all, nurse said it can do this, but thankfully I'm feeling more myself today. I have been having horrid nightmares, anyone else have them? Had one last night, not related to me but it was really vivid and horrid, like horror movie, wired!

surgeon app on Monday will know more about opp and when radiotherapy will be booked in, can't lie, I'm nervous, it's the "results" anxiety, 

Keep well ladies xxxx

Hi Ladies,

I'm just back from my Oncology appointment and am feeling really gutted. I am having to have 4 months of Capecitabine (Xeloda) which is an oral chemo and will start in about 3 weeks. The side effects sound horrendous. I will still need 4 weeks of radiotheraphy after that. The reason is that althought they said I was clear of cancer, I didn't get a total response which means there is a 20 - 30 % chance of the cancer returning. I haven't stopped crying since I got the news.

Davia, how did you get on at your Surgeon's appointment?

Mich, Any date yet for Surgery?

Claire, how are you recovering?

Linda, hope you're doing OK.

Love to you all,

Sue xx

Oh Sue I'm so sorry, what a kick in the teeth, that absolutely sucks. It's good that they're making sure they reduce the risk of it returning but absolutely gutting to have so much more treatment ahead of you. Sending love and hugs and channeling strength your way xx

im ok, thanks. Ended up going to a&e Sunday as I suspected, correctly, that my wounds had become infected. Now on a course of penicillin. Have to see the doctor again before starting radiotherapy which is due to start 23 March.

Davia, hope the appointment went well. I've definitely been having very vivid dreams since starting treatment.

Mich, fabulous that that's the last chemo! How're you feeling? First part of the move is done, I'm at my parents til May. They'll look after my son whilst I go into London each day for rt. I move back to my house in May. Loving being back despite the weather.

Anastasia, hope the recovery is going well. For the most part I didn't find chemo too bad, the last 3 sessions were a bit rough but the first 13 not bad. I didn't bother trying to keep my hair, once it started falling out my boyfriend shaved my head, I also went the headscarf route. I felt quite emotional on the ec chemo and very nauseous. The taxol gave me no side effects at all.

Love to you all x

Hello All, I've just been diagnosed with stage 1 TNBC.  I moved from the UK to The Netherlands recently as well so am completely numb and dealing with a different healthcare system.  Today has been a heart scan, MRI and bloods.  Meeting with oncologist on Thursday and genetic testing next week.  I can't stop googling and fearing the worst.  I'm 43 with an 11 month old baby.

Hey ladies, 

Ah Sue, im sorry to hear that. I rely hope the side effects are non at all, just like when you read the side effects on paracetamol and think WTF should I be taking these! Like Claire said it seems its an extra precaution to eliminate reoccurrence.

How u feeling today? 

I saw the consultant yesterday Ana he seems to think I can actually have a lumpactomy! Something I was not expecting. The tumours have shrunk enough for them to operate. They are going to discuss my case again tomorrow with oncology and then give me a call and must decide. Theyll do the opp in about 3 weeks, subject to this virus! 

So a little confused on what to have. I can't remember did u ladies all have lumpactomy? I'll still need a full node clearance. Apparently they rest the tissue aftrt removing to see if any active cancels cells which gives a percentage of reoccurrence. I wonder if this is how they decided you needed the tablets Sue? 

I'm OK otherwise just tired. On way to meet up with my boss, don't think I want to go into the office, maybe meet at a coffee shop. 

Aww sorry to hear that Claire, poor you! Hope it clears up soon. Must be lovely to be near your family again My mom is in South Africa but I have a younger sister here who works at the hospital so often kept me company.

Quite an emotional rollarcoaster couple of weeks for us ladies. Hang in there, if hugs xxx 

Hi Tinysmum

Love the name! Welcome to the TNBC warriors! And the C group one wants to join but alas we will get there and support each other through it.

There are a few of us ladies on here that are in various stages of treatment. I've just finished my chemo on Friday so opp next. 

I'm sure it's all very daunting at the mo, it was for me. I was very numb and didn't cry for ages just went into auto pilot to all the scans and tests, appointments etc 

I had the genetic test and I'm negative. Please don't Google anything, keep to the official sites. Breast cancer now & macmillan. a lot of into us out of date. 

Also download the becca app, very informative. 

Good luck for Thursday. Feel free to rant as much as you like in here! Big hugs xx

Hi ladies, sorry i've been quiet its taken me the whole 3 weeks since last doxe to feel human, had 5th one friday just gone and feel heaps better side effect wise as i had the dose cut by 10% and extra steroids so fingers crossed it lasts. 

Last chemo is Friday 27th, realised today they havent sent me home with the setroids for the 3 days so called them as I may be having a telephone consutation with my oncologist on the 23rd due to the coronavirus so wont be able to collect a prescription so they are sending me 1 to boots for friday. 

Opp pencilled in for Wed 22nd April. lumpectomy as my lump has been well and truely blasted, no sign of it at all .. unless it comes back i am BRCA + then i'll probably opt for preventative surgery with recon.

Also I have been awarded PIP at long last so thats a big weight off my mind as i am due to go down to half pay at work in 2 weeks.

Sue i am so sorry to hear you need oral chemo but look at the positives, they are doing everything to redue the risk of it returning, its bloody unfair though when you have been through everything you have so far on this journey, sending you a big virtual hug xx

Claire I hope youre infection has cleared up and you're starting to heal and feel well.

Davia i hope your doing ok and the nightmares have stopped.

Mich FAB news on chemo being completed and your surgery goes ahead as planned.

Take care ladies xx

Hi Anastasia

Welcome to our friendly group, I hope you are recovering well from your surgery. 

As Sue said Chemo isnt nice but it is doable, drink plenty of water the day before and day of chemo so your veins behave if you're having it via cannula, i've had 5 this way as chose not to have a Picc line, I have 1 left to go. I'd also suggest calling the helpline after chemo if the meds they send you home with aren't keeping sise effects at bay, they have meds for everything so you dont need to suffer. I was lucky and had none on my 3 FEC but knocked bandy on my 4th Doxetaxol but am ok on this 1 .. I hope it all goes smoothly for you 

Linda x

Hi Ladies,

it's been a while since I have heard from anyone so I hope you are all doing well? I have been thinking of you all and praying that you all get good news.

Could anyone tell me if they are going to be getting 3 monthly follow up appointments please? My Oncologist said that there is no real benifit to follow up appointments so I won't be getting monitored, I have to wait for symptoms. I haven't been able to sleep with the worry of getting a recurrance and it not being picked up.

Love to you all,

Sue xx

Sue I was just thinking this morning that the forum had been quiet. That sounds like bad advice to me. My oncologist in Hong Kong and my oncologist in London have both said 3 monthly check ups for two years and then annual for another 3 years. However, both did say that the 3 monthly check ups would be the blood tests and that not all doctors believe in these, that they don't give a true picture. I'm doing all treatment privately which may be why they're offering to do them. However, you should certainly be getting annual mammograms and ultrasounds. It seems crazy to me not to offer that, people I know that have been treated for bc on the NHS have definitely had annual check ups for 5 or 6 years after.

xx

Sue I was just thinking this morning that the forum had been quiet. That sounds like bad advice to me. My oncologist in Hong Kong and my oncologist in London have both said 3 monthly check ups for two years and then annual for another 3 years. However, both did say that the 3 monthly check ups would be the blood tests and that not all doctors believe in these, that they don't give a true picture. I'm doing all treatment privately which may be why they're offering to do them. However, you should certainly be getting annual mammograms and ultrasounds. It seems crazy to me not to offer that, people I know that have been treated for bc on the NHS have definitely had annual check ups for 5 or 6 years after.

xx

Hi Claire,

I will be appealing against the decision. I was in shock when I was told no after care.

Keep well

XX

Sue are they saying none at all? Not even yearly?

Hi Claire,

I don't know about yearly mammograms as it wasn't mentioned. I was really shocked that I won't be having regular scans or blood tests. I asked how I would know about recurrence and the oncologist said to wait for symptoms. By that time surely it would be too late !!. 

I'm in a terribly state about it as I was sure I would get regular checks

XX

Sue it sounds awful what you're going through, you will get a yearly mammogram or should for 5 years as thats what mum was told. I wont know what they will offer me until july time after Radiotherapy.

You would think they would do more in our 1st year as we are all worried its going to rear its ugly head again.

Sending you a big hug x

hey ladies,

Sorry didn't mean to be quiet either, have been thinking about you all.  I think we are all going through a tough time in our journey.  We'll get there.

when i met the consultant last week he said a lumpactomy would be fine but will double check with oncology.  Then had a call from the nurse to say i need to have a mastectomy now, boo.  Apparently the initial area of cancer was over 185mm :(  My last scan was January, so I've asked for another scan before they operate.  I'm seeing the consultant again on Tuesday to reconfirm the procedure and hopefully a date.  Its all very scary with this virus.

I'm sorry to hear you are struggling Sue. Are you going to have the tablets?  I wonder if i'll be offered them as my tumours haven't totally shrunk, well that i know off.  So check up once a year is standard procedure on NHS?  Are you having radiotherapy?

Hi Linda, good luck for Friday :) I'm sure you are really worried but they will take extra precautions,thinkin of you.  I got a text message to remind me to wash my hands before my hospital appointment on tuesday and to wash them before leaving.  Hope you get the BRCA results soon.  How long has it been?  

Are you all ok now Claire after your infection?

Hugs all around xx

HI Mich

I had them done in Jan so 12 weeks is just after easter, do they call you or write to you with results?

I'm thinking i'll be positive as mum had it and depending if its 1 or 2 my ovaries may need to go too! This TN is the gift what never stops giving!!!

How do you feel about having a mastectomy? I thought about it and I think they can go if it gives me more chance of it never returning i just dont know if i would have implants or the DIEP flap, but I'll give it more thought if it comes to that.

Linda x

Hi Linda,

Ok not long now then.  I requested a call when i completed the form, so they called and sent me a letter to confirm my result.  If you dont hear back by Easter i would mention it to your oncologist.  Mine was delayed until i mentioned it to my oncologist and they chased for me.  Apparently i signed the consent form to store my dna on file and sent off the blood but didn't complete the form to say i wanted to go ahead.  Weird as intially i only got one form.  I have my fingers crossed for you, you'll hear soon so you can make some decisions on treatment etc.

Well after being told i can have a lumpactomy last week i got my head around and i thougtht ok i'll go with that choice.  But now oncology hav said it must be a mastectomy, i was initially dissapointed but realise its the best choice and decision is now out of my hands.  I'm not sure about reconstruction either, i'll prob find out more on tuesday.  I know it will be a delayed reconstruction as i need radiotherapy first and it cam damage the new breast.  The consultant did mention last week he doesn't recommend implants for risk of infection.  I'm not sure if i have to decide on what i what done at the time of opp.  So have a list of questions.

Hope you are managing ok with the side effects.  I have pain in my fingers now my chemo stopped 2 weeks ago, weird! Ive read its the peripheal neuropathy (spelling!)

Hugs xx

I think I signed a form to say I wanted to go ahead I had a copy and sent 1 back, i still have the ladies number i may give her a call tomorrow see if anything is just sat in their system.

My surgeon told me implants can cause problems with scar tissue rubbing on them, I will probably go with what he recommends, he did laugh  when i said oh well there is a silver lining, i'll have new boobs and a tummy tuck at the same time lol

My last Doxe was a lot better on the 90%, i have neuropathy in my fingertips and toes which i will mention tomorrow, I dunno if you felt like this but I am amazed with myself that I have managed 5 chemos and survived.

Linda xx

Oh ladies it feels like all *** news in here at the moment.

Mich, sorry you're having to do that but glad you're ok with it, when will it be?

Linda, I said the same thing about perky new boobs (especially after 9 months breastfeeding) and a tummy tuck :)

My infection has gone but the wound on my breast has completely opened up. I saw the surgeon last week and she said what has happened is very unusual. I was due to start rt today but can't have it til the wound is completely healed which will take 6-8 weeks. Then we just have to hope there are still enough staff working to do it...

Im living with my parents at the moment, both over 70, so we're all self isolating together.

Hope everyone else is ok.

Love to all xx

Hi Ladies,

Sorry I left the conversation early last night, I was so tired, I fell asleep.

Mich, I'm sorry you need a masectomy but at least you will have peace of mind. This whole journey has been some rollercoaster!!! I was initially told I needed oral chemo but I was called in last Tuesday to be told I didn't. I am waiting for a date for radiotheraphy, it will be 7 weeks on Wednesday since my op so I am getting worried about the safe time limits.

Claire, will it take another 6 - 8 weeks for your scar to heal or 6 - 8 weeks from your op? This all seems never ending. Linda was right when she said it's the gift that keeps on giving. We have all been through so much already.

Linda, hopefully your BRCA test will come back negative. It's a horrid time all the waiting for results. I thought I would feel better after my op but I don't. I hope I don't feel this dread for the rest of my life, it's not a nice feeling being scared all the time. I'm not usually a woose but this is unprecedented.

Loads to love to you all,

Sue xx