Hi Everyone :)
I am new to the forum and to this group. I was diagnosed with stage 4 HER2+ breast cancer in 2013 with metastasis in my bones and liver. I did 6 cycles of doxetaxel with Herceptin and Pertuzamab (which was still a clinical trial drug at the time) and achieved complete radiological response. The Herceptin and Pertuzamub (plus oral Letrozole) has been ongoing, so 10+ years now. I had three brain mets surgically removed in 2015. Scans have been clear since.
Since finishing the docetaxel SE's have been minimal and manageable: intermittent itchy skin, brittle splitting nails, dry eyes, runny nose (rhinorrhea) leading to skin splits at base of nostrils, and, of course, fatigue. All very manageable and far better than the alternative 
Over the last couple of years I have experience a very gradually progressing numbness in my feet. Started just on the underside of my toes and then became a ‘sock of numbness’ that now extends to my knees. It’s a mild sensation but is now beginning to impact my balance very slightly. My oncologist dismissed it as being connected to a vitamin B12 deficiency that was undetected for a while, but I feel some of the progression has happened since that was rectified. Its confusing because its so gradual.
I pushed for a neurologist appointment to get an accurate assessment of the situation and have just had some tests done. There is some neuropathy but he feels that I need an MRI scan of my spine and some full bloodwork to investigate further. I found communication from the neurologist a bit confusing and left feeling I should have pushed him for more information because I’m not sure what he is looking for in these tests (I am assuming we are looking for B12 effects but maybe its looking for new tumors?), but I guess that will become clear in my follow-up consultation.
Anyway, this experience has made me want to touch base with any other long-term Pertuzamub users, to swap notes and see how others are going, especially if anyone has experienced this progressive numbness.
Beazles
Hi Beazles and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.
I don't have any experience with pertuzamub but I noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.
You might also like to join the secondary breast cancer forum as you'll then connect directly with others who may have a similar diagnosis to you.
To join, just click on the link I've created and, once you've joined, you can start a new post in the same way as you did here and join in with existing conversations by clicking on 'reply'.
It would be great if you could put something about your diagnosis and treatment to date into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.
"Never regret a day in your life, good days give you happiness, bad days give you experience"
Thank you Latchbrook, I’ll do as you suggest. Thank you for taking the time to help me make the most of these forums.
