Good news after bad news?

Hi Kelly,

I'm on my 4th line of treatment and i did kadcyla which unfortunately didnt work for me and my diseased progressed and obviously that was devasting but I'm now on a new treatment which is working.

I totally understand where you are coming from but I'm sure you will get some soon - even if its everything is stable I hope your mum is doing ok and i hope you are doing ok too 

Button x

Hi Kelly,

I'm on my 4th line of treatment and i did kadcyla which unfortunately didnt work for me and my diseased progressed and obviously that was devasting but I'm now on a new treatment which is working.

I totally understand where you are coming from but I'm sure you will get some soon - even if its everything is stable I hope your mum is doing ok and i hope you are doing ok too 

Button x

Thanks for your reply :) 

I am usually really positive and can keep positive for Mum but it has just been a rough 6 months so hard to imagine any better news coming! This is only the first time the meds have changed so I know it is relatively normal to not find the perfect meds first time... I just wish we could have instant results to know if they are working! 

Xx

Im sure you will get some but it does feel like that sometimes!

How often does she have a scan? Maybe ask the doctor to see what her tumour markers are doing. Are they up or down? That normally gives a bit of an indication. For me its my platelets, if they are low then i know things arent going well  but if they are normal I know im doing ok.

X

We have had quite a bad run of things recently so she has been scanned and scanned and scanned...  So we are relatively reassured that there is nothing more going on than a slight progression in her tumour count and a swelling in her lymph nodes in her chest. 

We have unfortunately had to spend the week going in and out of hospital as they originally thought she had a kidney infection... it seems maybe it wasn't now but she still feels really poorly :( 

Did you say you were on Kadcyla? Have you had any bad side effects? We think maybe all this illness could be down to having the treatment last week? 

x

Hi Kelly Sparkles

just read your post.  I am on Kadcyla. Only had 2nd cycle last Thursday 9th May and found that I am OK on the Friday and then  unwell with various symptoms for a week after. Feel queasy, very constipated, lack of appetite, severe acid reflux and so, so very tired that I can just sleep and sleep.  Yet the chemo nurses said that patients usually sail through this one with little or no side effects. 

I was on herceptin and Pertuzumab for 12 months but that stopped working and disease progressed (secondary breast cancer, gone into the lung and chest lymph nodes). Told there are many treatment options available for my type, HER2+ cancer so just need to keep battling through and ensure there is always positive energy.  It's the only way forward.

Take care, gentle hugs

Carolyn

Hi Kelly, just read your first post giving more information on your dear mum.  Yes, there are times when you feel you never get any positive news and its blooming hard to deal with. 

Those awful words "the disease has progressed" you never want to hear. 

I have found myself that I cant hold my bladder like I used to and when I do go it's not much more than a trickle, but I suppose its just part of this thing.  I am suffering from really bad acid reflux infact, a couple of times I have been sick when eating and have to consciously take smaller bites and chew more.  Not easy when you're a huge food lover like me. My wife and me are going to Italy next week for a week.  When we were told the herceptin and Pertuzumab had stopped working and disease had progressed we immediately thought we would cancel holiday. Oncologist said no, leave it until closer to the time to make decision. We are so glad we didnt cancel.  We have to get the mindset "we are living with cancer, NOT dying with cancer"

Stay strong, its all we've got.

Love

Carolyn

Hi Button,

Can I ask what treatment you are on now.  Is your cancer HER2+. 

I try to gather as much information on these things for such time as treatment stops working and I can bombard my poor oncologist with suggestions (I think there are times he could definitely make several suggestions to me LOL)

Kindest regards

Carolyn x

Hi Carolyn 

Yes mine is HER2.

I'm currently on capectibine and neratinib. I'm on my 9th cycle but I think it's slowly stopping working so I'll let you know. 

Good luck with yours x

Hi Button

Thanks for your reply, keep positive though. Do you have good oncology support? 

Keep fighting the good fight.

Sending supportive hugs

Carolyn x