Lomustine

Sounds very similar to us. We managed 6 months on lomustine and then again some slight tumour progression so they have changed the chemo again and now we are starting carboplatin which will be an IV chemo. 

Wishing you all the best. I remember hoping J would be well enough for lomustine but oncologist said she wasn't strong enough. I know it's hard to stay positive but we'll all be thinking of you both both xx

Hi 

I thought I’d reply to this. They moved us onto carboplatin last week which is an IV chemo. I believe this is now our last chemotherapy option. 

Yes those would then be carboplatin and avastin … 

how are you guys getting on? 

Hi Jobo.

My wife has just been put on this as progression and no chance of 2nd operation.

How has he been since?

He's had one round so far so it's hard to tell really.  I've heard it can make the confusion worse which is the last thing we need! But we will do the next round and see how we get on.  He'd been on tmz since the beginning so I'm guessing at some point it stops working so they change it.  Next scan is mid Oct so hopefully by the end of Oct we will have more information x

Thanks, I wish you the very best of luck.

It looks like we'll be on a very similar journey.

Best success wishes to ya Dek.  How is this "carboplatin" so far? how are you handling the side effects? What a chemo filled journey you been through. Your a true fighter. 

2nd operation is not always a success anyways, especially with these "debulking surgeries". My family member's cancer came back bigger than pre-surgery within 3-4 months.  Hope the chemo meds can control better. 

Sadly we managed 2 rounds of carboplatin only .. I noticed some rapid changes and asked for an early scan and sadly the tumour had basically fizzed out of control so they suggested no more chemo. There is one more option of avastin that we would have to pay for but even then they dont recommend it now. The last few weeks has seen fairly rapid decline in cognition and mobility. It’s now aggressive in the frontal lobe as well as original left temporal lobe area and also now deep In the brain and also on the right side. A surgeon did warn us the carboplatin could do this .. make the cancer more aggressive as it’s a more aggressive chemo. But he would have wanted to do it regardless. 
the rapid decline seems to have improved a bit this week and he is walking and talking a bit better but still very very tired and has a wet cough which I’m quite worried about having read end of life time lines and so on. 
ill let you know how we get on.