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 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

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.

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.

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,

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

Hi Sue & girls

I thought it was quiet in here, I replied on the 11th March and had no emails since, My mum went through all this last year and she doesn't get 3 month check ups, infact shes due her 1st year mammogram on Thursday.

Hope you are all ok while in isolation x

linda x

Hi Linda,

Sorry I haven't replied to you, I've been feeling pretty low lately. What with no checkups and the registrar telling me I needed more chemo. The oncologist, however, doesn't think oral chemo would be beneficial and I will still have a 20 - 30% chance of a recurrence.

Did your mum have triple negative breast cancer? The after for that is different to other types of breast cancer.

I hope you're keeping well.

Love Sue xx

Hi Claire,

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

Keep well

XX

Hi Sue

Yes mum was triple negative too, she finished all treatment in sept for me to be diagnosed in Nov x

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

Lindylu how awful. Have you both had the BRCA test?

Mum wasnt offered it as she was 67 with no family history, I have been tested and am waitihg for my results they said up to 12 weeks so am hoping they arrive sooner rather than later as if i am positive i'll be having preventative surgery with recon. My last chemo is Friday, i have a telephone appointment with my oncologist tomorrow to see if thats going to happen what with the coronavirus. I have had a good response to chemo with the lump going so if i dony have the last 1 i think they will do a lumpectomy as urgent they said then mastectomy once i get results if needed. This virus is awful so i would rather not have last 1 tbh so i can get my immune system back on track x