Positive outcomes triple negative

Hi Karen 

I'm so sorry that you've had to endure this so many times, you really must be feeling how unfair this all is, especially at such a young age. No wonder you are struggling mentally and losing your positivity!

I was ER+, so don't have any knowledge, but this group is quite a bit quieter than the main group and I guess those that have the positive stories may well have left the site because they don't need the support anymore.  You may want to try and post in the main breast cancer group as with any luck there may be a triple negative lady on there who's has stayed around.

The other alternative that may be worth your while is ringing the Macmillan helpline and chatting with someone on there - they do offer buddy calls too and this might be something that you need just now.  Here's a link to the page which has quite a few options for emotional support from Macmillan

Sorry I've not been able to provide any positive stories or you, but I do hope you can get the support that is so needed for you at this time.

Kindest wishes, Lesley

Hi Karen

Sorry you have such a lot going on, you are certainly going through it! There is no rhyme or reason to any of it and no wonder you aren’t feeling positive just now. I’m sure you will bounce back and be on the up again once you know a bit more and have a plan for your treatment. It’s certainly a roller coaster ride. 

I was diagnosed triple neg  in March 2018, same year as you I was 50 at the time, I had mastectomy, chemo x radio x also getting a zometa infusion every 6 months ! Getting it tmoz and then just one more to go.

I’ve been lucky so far and no reoccurrence. I struggled mentally after the chemo, but I’m doing good now. I try and walk a few miles everyday as that helps me, getting out in the wind x rain as well. I’m also back at work x that keeps me busy x grounded.

I also got into yoga and meditation and really enjoyed that. When I was struggling the breathing and meditation exercises did help me. There’s a free app called insight timer, have a google. It’s worth a try if you’ve not done it before. I also enjoy red wine  X a cheeky gin and tonic. Might not be best advise but I’m sticking with it for now.

I also met another lady triple neg at the yoga class x she was diagnosed 6 months before me and is also doing well. 

You will get through this next phase as you have the rest, it must be exhausting both emotionally and physically, so don’t be hard on yourself. You have to have down days sometimes and recognise those when they come and give yourself some space. Then you will rise up and find your  positively again.

I’ll be thinking of you x sending positive energy to you, wishing you all the very best

J xxx

Hi Lesley 

Thank you so much for your reply. 

I posted it on the main breast cancer group but didn't get any response. 

I may give macmillan a call as they put me in touch with someone in 2018 that was TN. 

Sounds like you're doing well. 

Thanks again for getting back to me. 

All the best 

Kaz

Hi J

Thanks so much for getting back to my post. 

Sounds like you're doing well, that's great. 

What's Zometa? I've never heard of it. I've only ever been given fec, docetaxel and carboplatin. 

I think I will feel better once I know a plan as I'm not sleeping due to the anxiety. 

I may think about yoga at some point but at the moment I don't think I'm in the right head space. 

I'm so scared this is it for me and my battle, I really need to get my fight back. 

Great to hear that you're doing things that make you happy especially in these crazy times. 

All the best and thanks again for taking the time to respond 

Kaz xx

Hi Zometa is an infusion to help stop the cancer coming back in your bones, I think it’s only for people who have gone through the menopause so might not be suitable for everyone. I’m getting it twice yearly for 3 years after the chemo. It can have side effects but I’ve been ok so far, one more after today. 

i think it also depends on the type of chemo you’ve had, but may be worth asking about? It’s at the end of any other treatment you may be having. I had fec x docetaxel.

Hope you feeling a bit better today x getting some sleep. This weather doesn’t help.

When’s your next appt. Have you managed to talk to anyone about it?  I found it best to speak to people I didn’t know as could be more honest about how I was feeling. Being positive does help as there’s not really any other option especially with friends x fam x it does make you feel brighter, but I didn’t feel like that all the time x I’ve not had as much as your going through. 

Have a good day,  How you keeping busy at the moment? It’s hard to be motivated but helps keep your mind still for a bit. I’ve done a poppy for my window for Armistice Day and just down loaded Imovies to make a video for a Birthday pressie. That’s fun to do, never done it before.

Take care and keep your chin up, you’ve smashed it before x will do it again xxx

Oh I see, that sounds like a really good treatment to have. 

I do keep busy (lockdown permitting) and I'm a super positive person but I'm so scared this time as chemo hasn't worked before. 

I'd love to hear its shrinking, just once would be amazing then I'd get my fight back. 

My husband has started getting a bit fed up with me crying I think so I'm trying to be strong  

I had an appointment yesterday and I start a tablet form of chemo on Monday to see if it shrinks, then they'll scan me in December to monitor it. 

I'm just not confident I can beat it any more and this virus isn't helping my morale. 

Sounds like you're nearly all done! Really hope you can start getting your life back 

Thank you getting back to me 

All the best 

Kaz 

Hi. I was diagnosed last year (see my profile) and all I hear is bad news about TNBC and I struggle with that too. So far I’ve had EC, Then weekly pacitaxol with 3 weekly carboplatin then single mastectomy. I then started on herceptin and zometa. It sounds like u are really going through it. Sorry but I’m only 15 months down so can’t give u good news beyond this xxx

Kaz keep your fight its hard I know but there is light at the end of the tunnel. Here is my positive outcome. I was diagnosed TN breast cancer almost a year ago.  I was 61 but very fit at the time.  My tumour was 2.8cm and my lymph node as even larger.  I do not have a spleen so I had to make sure all my vacinations were up todate before I started chemo.  I had Chemo in January 3 EC combination on a 3 weekly cycle ffollowed by Carboplatin and Paxataxel weekly.   

My cancer shrunk after the first treatment and the oncologist had trouble finding it.  The lymph node was still easier to find.  After second treatment the tumour could not be found to touch and the lymph node could not be felt either.  I still had to complete my chemo.  4 weeks before chemo due to finish I had an MRI which showed no visible signs of cancer in the breast or the lymph node.  I had to finish off my chemo.  Lympectomy and 4 lymph nodes removed.  Pathology results came back as a complete pathological result so on cancer.  I decided to have radiotheropy as it was advised.  Thought in for a penny in for a pound.   

I started my running again one month after my op when cleared to do by my breast care nurse.  Started by doing the couch to 5k and then increased by 5 mins a week and although much slower than I used to be I am now running for 50 mins each time about 3 times a week.  I am also riding my horse again.  I should get back up to full fitness eventually but I am learning patients.   If you need to cry cry get it out.  I made friends with a couple of ladies while we were having chemo and we still contact each other for a natter and mutual support now.

Its not easy but the end seems a long way off but it passes quicker than you think.  If you are worried or want some support contact your breast care nurse all of the ones I dealt with were great and supportive.  I drank lots of water during and after chemo as it helps to move it out of your system.  If you want any more infomation or just a rant or scream just let me know.

Sue

Hi Sue

Thanks so much. I'm not doing too bad at the moment thanks. I've been to some dark places over the last few months but I'm getting my head around being palitive now. 

I've had so many chemo's, radiotherapies and operations I dread going to the hospital now. I'm currently on capecitabine chemo tabs as they're trying everything to shrink it this time as my tumours haven't shrunk before  

Sounds like you're doing really great though. It's such an uplifting story hearing about your experience. 

I'm hoping mine will now shrink and they can keep them at bay for a long time, I've never had pacataxel before but that is one of the options if this capecitabine doesn't work but hopefully it will  

Thank you so much for getting in touch. 

Keep safe and well and enjoy all your activities. 

Kaz x