Hi Pippin / Greeney / Carol and Jolamine

Gosh everyone this rollercoaster just never ends 

the rash has spread to both breasts along both scar lines.  It’s itchy and red. 
im not unwell and it’s not hot to touch 

I saw the breast team and they are unsure.  Not infection related but could potentially be allergic reaction to letrazole.   I’m seeing my surgical team Thursday for them to assess. 
they mentioned biopsy and now I’m in panic mode.  Is it inflammatory breast cancer in the remaining skin ? The fact that the surgeon found more cancer in my breast has totally freaked me out these last 2 weeks despite hi  “ removing it in mastectomy “ 

I’m also very worried if I have to stop letrazole.  What does that mean in terms of preventing recurrence.  

my return to some kind of normal feels so far off I’m struggling to find any positivity right now 

xx 

Hi just reading your comments earlier I was just wondering if you could be having an allergic reaction to the metal ports either side that you mentioned ,a lot of people are allergic to metal , regardless I really hope its nothing serious  and that there's a simple explanation .

Hi Jenny 

ah I hadn’t thought of this.  I just need an answer I guess.  The forever waiting and not knowing is the worst.   
xx

Yes of course you do ,it just seems strange that its both breasts ,It wouldn't surprise me at all if that's the cause of it ,its why I can't wear ear rings but I really hope its something along those lines xx

Goodness NGS.  That sounds uncomfortable.  Sorry to hear you're going through this.  Glad you've seen the breast team and it doesn't sound like they are overly concerned, so I would take some comfort from this.  However, I know how uncomfortable rashes/allergic reactions can be.  Hopefully they will get to the bottom of it.  And definitely follow Jolamine's advice and take photos.  Good luck with the surgical team on Thursday.  Let us know how you get on! 

 Pippin24  NGS  I saw my consultant yesterday and he has agreed I can have infusions  rather than tablets and has swapped me from ibandronic acid to zolendronic acid.  I start on Thursday.  How are you both feeling now?  I will have the first one at the same appointment as I have my immunotherapy, but am hoping it won't be too bad!!  I might take an overnight bag, just in case!

Hope everyone is doing well and enjoyed the bank holiday weekend. 

Carol xx

Hi everyone,

Just reading through all the messages.Sorry have been slightly absent. Spent 10 days in Jersey with family and kind of went off grid so just catching up.

NGS Like the others have said i'm glad you've managed to speak to someone from the breast care team.Hope you can get some answers soon. I hadn't realised you had metal ports still in, could well be an allergy to that..i would mention that. Glad you're not feeling unwell though and no temp, that's definitely a positive.

And like the others say there are other drugs aside from Letrozole - i'm currently on Anastrozole and apparently that's the same but is actually better tolerated (according to my oncologist) So there will definitely be options if letrozole is what's causing the rash. Either way i hope you get it sorted soon, keep us posted and in the meantime sending positive vibes your way and hope tomorrow's appt can provide some answers.

How is everyone else doing??

Carol1964  Great you can now have infusions....i too will have Zolodronic acid at some stage so would be good to hear how you get on with that.

I have an appt on the 17th September with my oncologist,i think just a follow up appt after radio and to update on how i'm finding the drugs (Zoladex and Anastrozole) and hopefully get a date to have my port removed! So far the drugs are ok i think...definitely some hot flushes but so far manageable...slightly achy legs but i'm trying to up my exercise to get back to pre chemo weight so it may just be that!?!? they say side effects peak at around 2 months so i still have another month or so to see if the side effects worsen but so far it's all ok and i do feel like energy levels are back to normal which is so nice ......just to give everyone else some hope that a new normal is possilble!...so far anyway.....i think there will always be an underlying worry that something will come back and i think there will always be reminders with regular appts,checks,injectionsnetc...but life is back to as normal as it can be for now!..

sending love to you all xx

Hi everyone, hope you're all making the most of this lovely weather. My daughter's on her way over with the grandchildren, so I'm looking forward to a lovely afternoon.

NGS- sorry to hear that your rash has got worse, it sounds really uncomfortable. Why do our minds always go to the worst case scenarios. I've been doing exactly the same about aching bones. Have they tried you on anti histamine, especially as you have it on both sides. I've been getting really itchy arms, which I think is the phesgo injections. I've got cream and anti histamine  which does help. It seems to get worse when it's hot. If it is the letrozole, they may just give you some meds to counteract it, or give you an alternative to let letrozole. Hopefully you'll get dome answers at your appointment tomorrow. Let us know  how you get on. Xx

Carol- good to hear that they changed you over to the Zoledronic infusions,  so much more convenient. I felt a bit shivery and achy the day after, but was back to normal after that. I did have the phesgo on the same day, so that may have been the reason. Still if it's only for 1 day every 6 months, that's not so bad. I'm feeling really well at the moment, just need to sort out a few appointments  before I go away. My echocardiogram is due the week after surgery, so want to try and get that done a bit sooner. Also my phesgo is due on day of surgery, not sure what happens about that. I also need to find out about post op bras. How do I know what one to buy or what size? They told me my boobs will be smaller, but not what size they'll be. 

Greeny80 - lovely to hear from you. So pleased that you had such  a lovely holiday. Xx

Hi everyone, just needed to pop on here to let of a bit of steam, as feel a bit anxious this afternoon. I spoke to hospital pharmacy today as they are going to deliver some medication to me next week. I mentioned that I an due a phesgo treatment the week before my surgery and is that OK. After speaking to oncology they said that I could have the phesgo, then surgery, the following week. I then spoke to BCN about results of my ct lung scan I had in June. She told me it says all is stable, but should talk to macmillan nurse about it, which got me worried. Spoke to macmillan nurse, she said the results are not back yet, so BCN must have been looking at previous results  She then said I can't have the phesgo injection the week before surgery. She said you can't have it 2 weeks before or after surgery. So I'm getting really mixed messages and don't know what to think. I'm also due an echocardiogram next month and tried to explain to macmillan nurse that I'll be away from the 12th-29th September, around the time it's due. She just said if you get an appointment  just tell them you're away and they'll change it. But of course I won't see a letter if I'm away. It really needs doing before surgery as it won't be possible after. Have been told phesgo can't continue if echocardiogram not up to date. Apparently the chemo unit organises these appointments, so might try giving them a call tomorrow. Sorry for the rant but my head really us all over the place today.. 

NGS - how did everything go with your appointment with the surgical team? Hope you got some answers and they were able to reassure you.

Hope you've all had a lovely day. Xx

Hi NGS,

How did you get on today? I hope that you are a bit further forward.

Kind regards,

Jolamine xx