Is treatment still working?

Hi

I started on Pazopanib about 4 years three months ago and am currently still on the medication.  I too am questioning if it is continuing to work as I am on the STAR trial where I have treatment breaks.  it appears to shrink the new tumours but the larger, older ones appear to be less affected by it.  I too have the white hair and during the breaks it begins to colour again although I was grey to start with.  When I have a break now the colour change is barely noticeable.

I have got concerned several times in the past as some of the symptoms that I used to experience have not returned after a treatment break.  I can currently eat more or less what I like without any impact, I have not had diarrhoea in months and no longer get sore hands and feet (although this may be due to better management on my part).

I too tend to worry that a change in side effects indicates that the drug is no longer targeting the tumours but this is not necessarily the case.  At the end of the day I think that whilst these thoughts are only natural and completely understandable the only true measure is the CT scan.

Since starting the medication I have always known that it is likely to stop being effective at some time but I am reassured by the fact that there are so many more treatments available since I was diagnosed and these are still being developed.

I'm not about for the rest of the day as I have organised a meet up in York for online community members but will be checking in again tomorrow if you have any specific questions but I am sure that others will be along soon with their experiences.

Wishing you all the best,

Gragon x

Hi Gragon, 

Thank you so much for your reply , it really has helped to know if nothing else that I am not alone in my thoughts. 

I have been lucky to tolerate the drug so well for so long at maximum dose. My side effects have been minimal with only hair whitening and it’s knocked my thyroid . 

I think pre scan anxiety is normal and I know it will be the only way to find out as like you I am aware that this treatment  will have an end date . I also know that some of the other treatments that are now available are even more effective and I attend a fantastic hospital, The Royal Marsden. 

I have only had one break from my treatment whilst I had surgery ( not cancer related) and didn’t notice any real changes then , hence my worry now. 

I hope you have a had a good day . 

Jak x 

Hi Jak

I don't know if it helps you or not, but I've been on Pazopanib for 2 1/2 years, my hair went white immediately, but over time, the front has stayed very white, but the back has darkened. Nowhere near as dark as I was, but it's a definite ash blonde, not white as it was to start with. I have remained totally stable as far as the mets are concerned.

Fingers crossed for your scan.

Hi Jo300

Thank you so much for your message - good timing as I get my scan results tomorrow. 

I have been stable for nearly 4 years now so here’s hoping for a few more years for all of us x