Erivedge

Hi Lillies 

I don't have any personal experience with the drug Erivedge but 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.

I've done a search in the group and found these two posts which mention vismodegib (Erivedge). Unfortunately both of the posters have since left the community, so you can't contact them, but you can read what they originally posted.

Hi i started on it 7 weeks ago.

Are you taking it too? x

Hi I opted not to try it yet I went for the Photodynamic Treatment I didn’t want to rust the leg seizures as I need to drive 

Ah ok! I have lots of bcc'a too. Had a lot cut out but have mors ao they gave me the oprion of immunotherapy or vismodsgob which im now on as fhe immunotherapy can cause lifetime side effects 

Ah right I’ve had the PDT on three  at Christie’s but not sure if it’s cleared one and now I’m a bit does it work as my consultant at Leigh said they don’t normally use PDT on nodular Bcc’s and these are she said they usually only use it if there is a Bcc on the face or if they are superficial so I’ll see when I’m back next week. How are the side effects of the Erivedge

Ah i see, fingers crossed for you.

I started with muscle cramps about 3 weeks ago and they are getting worse and more intense. My husband had to come back home this morning from his journey to work they were so bad. They dont get that bad all of the time its been 3 times now usually when in bed. But they ade excrutiating and leave you exhausted. Ive ordered a wig but hair hasnt started to drop out yet, itll be in the next few weeks probably. You probbaly made the right choice!

Aww hope it’s not too debilitating it was the cramps that put me off and the lethargy as I’m my mums carer and  I just couldn’t risk not being able to drive or being laid up in bed. The medication is on the back burner for now so just going to see how this PDT goes which hospital are you under 

I get that., its probably a goos thing.

I can have many good days where im only tired if i do too much but it is getting worse.

Im with the Royal Marsden. I have insurance so travel down every 4 weeks to see the oncologist

Hope the symptoms get easier for you. How long have you had the Bcc’s I started with them in my early 40’s and I’ve had over 10 either cut out or treated with chemo cream or now this PDT just going to see what happens when I go back I’m waiting to see the plastic surgeon to see if I need one cutting out of my head 

You sound so like me. I probably saw my first one about 10yrs ago on my breaa