Awful side effects

Hi Bees 

It's interesting that you have been diagnosed with panniculitis. When I was on Dabrafenib and Trametinib, I periodically got sore, reddish, swollen lumps on my legs and arms. This happened whenever I was feeling particularly rough as a result of my neutrophils (white blood cells) being too low. I ended up with sepsis a couple of times because of this but not one doctor could explain the sore lumps and bumps and aching muscles. Many doctors on different occasions looked at me and came up with lots of different theories. It sounds likely that it was panniculitis. 

I feel for you as it's pretty painful!! I was told on occasion to have a few days off the drugs when my neutrophils were too low and this would always help with the lumps and bumps and generally feeling rotten. Maybe you need a wee break from the tablets. 

Wishing you all the best. 

Aw interesting! Well it was me who said to the nurse that I think it’s this then my consultant came back and said that I need to start on steroid tablets and alter my drugs.

Abit worried about starting on steroid tablets but it’s only a short course until the swelling has gone down. It’s just a mine field to what works! 

Did you end up staying on the drugs for the 12 months? This is only cycle 3 and I’ve been on and off them!  
Aw gosh I don’t want to have to worry about sepsis aswell!

Thank you for responding always good to hear somone else has had the same.

Hi again Bees Well done on your investigations. I Googled panniculitis and it seems to fit my experience perfectly.

Yes, I managed the full 12 months although I did have a few breaks, like when I was in hospital or feeling particularly poorly.

I wouldn't worry about sepsis. This was brought on by my neutrophils being so low that I couldn't fight infection. It was always sorted by a few days in hospital on IV antibiotics and a break from the Dabs and Trams. I assume you'll have had blood tests and they would recognise if your white blood cell count was low. Low neutrophils, fatigue and this sore lump situation were my main side effects. 

I'm fine now and just on the routine CT scans and skin checks now. 

I hope the steroids sort things out and you feel so much better soon. 

Any questions etc, please don't hesitate to get back to me. 

Best wishes x

Aw thanks for all the info and setting my mind at rest! 
I do meditation to help with the pain but that’s not helping today as I was spiralling thinking about things.

Really appreciate you replying. No doubt I will be on here asking for more advice! I do like this page as so many people going through the same as us so I don’t feel so alone.

Thanks again