Triple positive diagnosis

Hello lovely! 
Im 33 and have a diagnosis the exact same as yours although my tumor is 6.5cm ! I’m currently on chemo. I felt better once I started I’m now halfway through chemo and will have a mastectomy and then radiotherapy. I too just want to get back to normal, I tend to have around 9 days of feeling quite rubbish and then the other days I feel ok enough to do things with my children (6 & 9) I’m on 21 day cycles.

if you have any questions feel free to fire them at me

I hope all goes well with your treatment, we’ve got this  xx

Hi Db,

I’m similar I think but not sure what triple positive is. I started chemo today and so far I’m doing ok.

I’m 45 and my kids are 16 and 13. They both found today really hard and my husband is not coping well, so it’s been a bit difficult. I’m hoping I can navigate the next few days ok and feel like I’m able to be enough for the kids. Most of when I got back from hospital today was cuddles and reassurance for them and trying to manage a shouting, angry husband. Sigh. 

The main thing is to try to look out for yourself as much as you can. There are support groups for kids too, but as hard as it is (and I’m finding it really hard) you need to come first for a while.

All the very best with your chemo,

Ruby xx

Hello,

Thank you for you reply, it helps to understand how the treatment has affected someone else, I think the fear of the unknown is also quite scary. Do you mind if I ask if you have lost all of your hair?

I’m pleased to hear you are able to still enjoy some time with your children, that is so important to us as mums isn’t it!?

I hope the rest of your treatment goes well and the end is soon in sight.

take care

Dionne xxx

Hi Ruby, 

I am dreading the first treatment but also just want to get started, I hope you feel a little relieved now things are finally moving. All of the appointments are exhausting aren’t they!!

I worry that my husband is in denial, he just keeps saying he’s ok as long as I am so I then feel the need to keep everything together!! My boys haven’t really said much, maybe that will change when chemo starts.

I hope the next few days go well for you and your husband can see you are going to get through this.

Take care 

Dionne xxx

Hi Dionne,

Yes, the first chemo is frightening. I was quite teary on the way in today and again when they started the chemo infusion. The nurses were really kind. Do you know what kind of chemo you’re having.

I’m having EC-T, and today went well. Started with steroid and anti sickness infusion and then the chemo which was given in large syringes which were plugged into the infusion machine. My cannula got a little sore so the slowed the infusion rate down and it helped. The ‘E’ part was bright red which was surprising - I’ve been peeing red as a result! I was in for just over 2 1/2 hours and honestly it was ok, they look after you so well.

Tips - drink plenty and make sure you are well hydrated before treatment. It helps them get your vein easily and also helps you flush everything out of your body and help manage after effects. (I did have to pee a couple of times during treatment!)

Take some food with you. Mine was over lunch time and they offered me a cheese sandwich. I was a bit to nervous to eat but by the end my stomach was rumbling! I’ll take small snacks next time. I did take some herbal tea bags as I don’t like tea or coffee, it meant I could have a hot drink to sip. I was scared to eat but I think it would have been better if I had.

Ive been feeling a bit groggy tonight. I have meds to take over the next few days, including anti sickness. I’ve had a bit of nausea but manageable. The steroids mean it’s hard to sleep- hence the time of reply and my head feels foggy. Otherwise, so far so good. 

Be kind to yourself on the run up. It’s ok to cry. My husband was also in denial. So far he still hasn’t read any of the paperwork or info sent. I gave him things to do on the day, like pick up shopping and go to Boots for me, he did find today really hard so I hope he settles over the weekend. 

This is a long message now! But while I was there, there was an older man, probably about 70 there having treatment. He was very frail looking but as he left he stopped to talk to the nurses. He told them he was off to pick up his Morrison’s shopping, then catch the bus and ferry home on his own! We can do this!

Take care and keep in touch, I’ll be thinking of you,

Ruby xx

Hi Ruby, 

I don’t sleep well at the best of times so being awake in the night won’t feel too alien!!

I’m having EC-T too, also having a vascular port fitted the day before to make the chemo, other medication and blood tests a little easier, have you not been offered that? 

I can’t imagine wanting to eat at all that day but I will definitely take your advice and have some snacks with me, my nurse has advised to keep well hydrated, I have to keep telling myself to drink as I always forget. 

I haven’t really cried, did you find that prior to treatment? It’s almost like I’m going through the motions and it’s happening to someone else, or I’ll wake up and it’s all just a bad dream!!

I’m really pleased to hear that you’re not suffering too much at the moment and I’ll be thinking of you, I hope the next few days go by as well as they can.

Like you say if the man you saw there can get through it then so can we!!

be kind to yourself and let me know how you are getting on.

Dionne xx

Morning! The fear of the unknown is definitely the worst! In my opinion chemo is no way as bad as I imagined! My chemo is TCHP - Taxotere (docetaxel), carboplatin and then Pertuzumab and trastuzumab to target the HER2. 
I am able to get out of bed and potter about even on my worst days, the first round for me was the worst (it was too strong so they ended up reducing slightly for the next ones) and they keep a check on your side effects and can give you something to counteract pretty much all of them which makes the next ones easier too.

Do you know which chemo youl be having? It may not be exactly the same as mine as everyone’s is decided on what’s best for them as an individual and if it’s done before or after surgery. 

I am using the cold cap and so far with much success ! I have a bald spot above each ear and some slight thinning up top but everywhere else is still really thick! I still look like me to me and the kids so that was why I’m doing it (also because docetaxel has a small chance of causing permanent hair loss and the cold cap stops that) 

if you can and are offered it I’d definitely give it a go, even if the drs say your drug isn’t usually successful - I’m on a Facebook cold cappers group and even those who’ve been told they have no chance have had great success or have said that because their follicles were protected they’ve had rapid regrowth! 

its a tad uncomfortable for the first 15 mins until your head gets used to it and numbs but I take paracetamol an hour before and that helps! It’s definitely not as bad as I thought! 

hope this helps - always happy to answer questions

lauren x

Hi Dionne,

I haven’t been offered a vascular port at all, I think it will depend how my veins hold up. Quite bruised on both hands now from bloods and yesterday’s cannula. 

I’m an expert sobber so have done quite a lot of crying over the past while! I was quite frightened yesterday though. 

Still doing ok. A bit nauseous and groggy but all manageable. Not much appetite but trying to keep drinking. Losing a few pounds won’t hurt me!

keep in touch,

Ruby xx

Hi can I ask how your treatment is going, I am triple positive as well xx

Shaz52

Have you started any treatment yet? I am also reading up just to prepare myself. 

Some great tips about hydration, cold cap and packed lunch. Don't ever know what to expect!

Hope you are OK there.

C x