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

Hi Ladies,

Mich and Linda, I'm glad you enjoyed the workshop. I was so impressed with the bag of goodies and all the make-up tips. I'm happy you are feeling better Linda, I'm sure it will continue. How are you feeling Mich?

Davia, I'm glad you are doing well. You will feel better once you're home in familiar surroundings. It's really nerve racking waiting for the results, it was a long two weeks for me!!

Take care Ladies

xxx

Hi Ladies how you all doing?

Mich you must be at the end of chemo by now, have they given you a date for op?

I still have my drain in, it only stopped draining under 30ml last night, so they give you two days and see if it continues to reduce output before taking it out, I have had a nurse phone every day and come in every other day to look and change dressings. I do have numbness under arm and also in for arm, but they say that's normal and the for arm should get better in time, you get like prickling sensation and the numb area is sensative but nothing more. My energy after op has been rock bottom, and I must confess to feeling very low, but again the nurse said this happens, it's a side effect to anaesthetic, hopefully I will feel myself again soon. 

Claire and Sue how are you doing after your ops? Have you started radio therapy yet? If so how is it? Hope your both feeling well xx

Linda how is it all going? 

Love to you all, keep well xxxx

Hey Davia,

Been thinking of you ladies today, so thanks for the message and reminder :)  Sorry to hear you are uncomfortable at the mo Davia, sounds like they are keeping a good eye on you.  Have they given you exercises to do for your arm.  Its been a tough week fo rme too after the double combo!  Was so down and fatigued had to stay in bed for 2 days after i attended the workshop.  Started to feel better on Friday and not too bad this weekend.

I started the 10 000 challenge with CR UK, to do the steps each day.  Did ok over the weekend, the hoovering did help haha!  Only on about 7 000 today but sure I'll make up for it later.  I need to have something for me to focus on as my mind is wandering a bit too much and I get morbid and all foggy brain, err more than usual!

Its my last chemo this Friday, so off to my pre assessment tomorrow, fingers crossed.

How you all doing ladies? Hope you managing ok , big hugs

xxx

Hi ladies, been thinking of you all but been fairly hectic with moving back to the UK.

Mich, last chemo, hooray! Sorry you felt so rough. Remind me what's next for you? Very impressed with your steps.

Davia I have the numbness too and it feels a bit lumpy under there. I'm sorry you're so low but yes, definitely a side effect of GA. Did you know you were  having all the lymph nodes removed?

Lindy, glad you enjoyed the course. How are you feeling now?

Sue, no one has said anything to me about more chemo, I would also have felt gutted! Now slightly worried that it hasn't been suggested... Do you have a date for the appointment?

I went up to the hospital yesterday and she's saying 4 weeks of RT, we've decided to do the lymph area as well as the breast. Going in on Thursday for the planning appointment and due to start treatment on 23rd but I want them to pull it forward slightly if possible. 23rd will be 6 1/2 weeks post op.

Love to all xx

Nat, welcome and sorry to hear about your diagnosis. How did the surgery go? Have you had chemo?

Sending love x

Hi Ladies,

Davia, I wish you a speedy recovery. Hopefully every day you will fee stronger.

Mich, well done on attempting the 10000 step challenge. I really need to get back in shape, it's easier when the weather is better. I hope you start feeling brighter soon, I know the dark days only too well.

Claire, I'm seeing the oncologist next Tuesday. I'll find out then if I need more chemo and I'll let you know what he says and the reasoning behind it. I haven't got a date for radiotherapy yet but I'm also having it for 4 weeks.

Linda, I hope you're doing ok.

Love to you all,

Sue XX

Hi, had the surgery last Thursday. 
home now resting and recovering.

Next meeting with consultant on the 20th. 
They said that I will need chemo but not any detail yet. 
 

Any hints on what to expect, welcome. 
 

Hope everyone else is coping ok.

Anastasia 

Hi Anastasia,

I wish you a speedy recovery. Chemo is not nice but it is doable. Everyones experience is different so hopefully you will be able to tolerate it well. Drink loads of water, it really helps. Take books, magazines etc. as it is really boring.

Stay strong,

Sue xxx

Hi Mich

They give you excersize to do, you do them three times a day, the only uncomfortable thing is when the nerves start healing, well I think that's what there doing, you get spiky feelings, i have also forgotten about the arm and reached for something or leaned on it, you certenly know about it when you do but apart from the low mood after GA it's not been as bad as I thought, when you have your op you may find 1000 steps a challenge, I have had no energy, nurse said it's normal as body is healing and clearing GA not to mention getting over chemo, so be kind to yourself when you have your op, have they given you a date yet? They normally leave you 4-6 weeks after last chemo, but no longer than 6 weeks, I also had a scan two weeks after chemo. Great news your having last chemo Friday well done xx

Oh just had phone call from nurse, she's coming out to take my drain out today, I'm such a baby, I'm now worried it's gonna hurt lol  

Hi Claire 

Hope the move goes smoothly, and your healing well, fingers crossed you can get the appointment moved forward for your RT, I'm seeing the surgion on Monday so will ask him when I can start mine, I hope they don't leave it to long. Let us know how you get on at planning appointment and what they do good luck with it all xx

Sue, yes we would all be gutted if we had to have more chemo, bless you, let us know what they say and why they have mentioned more, hope your healing well from the surgery, hugs xx

Keep well ladies xxxx

Hi Anastasia 

Welcome, I hope your recovering well from your op, as sue says, chemo effects us all differently, but the team really look after you and monitor you closely, listen to your body, was a good tip someone said to me, are you cold capping or going for the shave? , I went for the save, it felt quite liberating, I did buy two wigs but to be honest I hated wearing them, I much preferred scarves and hats, oh o e thing I did invest in a good thermometer just to keep eye on temperature and body cream, you may find your skin dries out. But it is doable, let us know when they give you a start date. All the best xxx

Hi Anastasia 

Welcome, I hope your recovering well from your op, as sue says, chemo effects us all differently, but the team really look after you and monitor you closely, listen to your body, was a good tip someone said to me, are you cold capping or going for the shave? , I went for the save, it felt quite liberating, I did buy two wigs but to be honest I hated wearing them, I much preferred scarves and hats, oh o e thing I did invest in a good thermometer just to keep eye on temperature and body cream, you may find your skin dries out. But it is doable, let us know when they give you a start date. All the best xxx

Ladies, everything hurts today! Joints, bones, back, lumpectomy area. Anyone else had this?

x

Hi Claire,

I'm very tender where the lumph nodes were removed, and feel very tired all the time. Strangely, I have difficulty sleeping. I was aching all over but since I started exercising I feel a lot better. 

Love to all,

Sue xx

Thanks Sue. I do think some of it is a general lack of moving my body!

x

Hey ladies, 

Ah sorry to hear you in pain Claire. Hope painkillers will work. Is the move all done for you? Hope u taking it easy

Thanks Davia for the update, I'll find out more on the 10th and let you know. Can't remember sis you have another scan aftrt chemo? 

The challenge is just for March so should be fine with opp as would imagine be after this. Only managed 6000 odd yesterday as the weather was awful! So may make up for it this weekend. 

Last chemo at 2pm! Yay. Hope u don't stay there too long as its alway hectic on a Friday afternoon in the unit. Did bake a cake tho nom nom.

Any more news in your treatment Sue? 

Big hugs all around ladies xxx 

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