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I had gamma knife just before Christmas on a 2.5cm tumour along with four smaller spots. My main side efffect was fatigue starting around 3 days after and lasting for maybe a week but nothing in comparison tio the fatigue experienced from whole brain radiotherapy recently on the forty mets.

The gamma worked well at shrinking and controlling the five tumours treat pre Christmas, but zelboraf didn’t do the job for me in my brain or elsewhere unfortunately.

No probs whatsoever with the frame or fitting or the actual treatment which took about 2.5 hrs after plan setting. I lost a patch of hair a month after as the biggest tumour was near to the surface….it did start to grow back within a couple of months but now obvs all gone with the wbr

Good luck and sorry to hear your news.

Jenny

I had gamma knife just before Christmas on a 2.5cm tumour along with four smaller spots. My main side efffect was fatigue starting around 3 days after and lasting for maybe a week but nothing in comparison tio the fatigue experienced from whole brain radiotherapy recently on the forty mets.

The gamma worked well at shrinking and controlling the five tumours treat pre Christmas, but zelboraf didn’t do the job for me in my brain or elsewhere unfortunately.

No probs whatsoever with the frame or fitting or the actual treatment which took about 2.5 hrs after plan setting. I lost a patch of hair a month after as the biggest tumour was near to the surface….it did start to grow back within a couple of months but now obvs all gone with the wbr

Good luck and sorry to hear your news.

Jenny

I had gamma knife just before Christmas on a 2.5cm tumour along with four smaller spots. My main side efffect was fatigue starting around 3 days after and lasting for maybe a week but nothing in comparison tio the fatigue experienced from whole brain radiotherapy recently on the forty mets.

The gamma worked well at shrinking and controlling the five tumours treat pre Christmas, but zelboraf didn’t do the job for me in my brain or elsewhere unfortunately.

No probs whatsoever with the frame or fitting or the actual treatment which took about 2.5 hrs after plan setting. I lost a patch of hair a month after as the biggest tumour was near to the surface….it did start to grow back within a couple of months but now obvs all gone with the wbr

Good luck and sorry to hear your news.

Jenny

Your post gives me great hope. I have 40+ brain tumours and lots more everywhere else. Had wbr 6 weeks ago and been having ipi but had to stop due to colitis and neuropathy. Really hoping to have some sort of response like you and a timely post has given me a nice boost whilst going through a grim few weeks. Thank you and hope you carry on with positive results!

Jenny

Your post gives me great hope. I have 40+ brain tumours and lots more everywhere else. Had wbr 6 weeks ago and been having ipi but had to stop due to colitis and neuropathy. Really hoping to have some sort of response like you and a timely post has given me a nice boost whilst going through a grim few weeks. Thank you and hope you carry on with positive results!

Jenny

Your post gives me great hope. I have 40+ brain tumours and lots more everywhere else. Had wbr 6 weeks ago and been having ipi but had to stop due to colitis and neuropathy. Really hoping to have some sort of response like you and a timely post has given me a nice boost whilst going through a grim few weeks. Thank you and hope you carry on with positive results!

Jenny

Sorry for the delayed response I’ve actually been in hospital for the last week. I’ve recently had wbr for 40 brain mets at the same time as having the third dose of ipi. I’ve been pretty much in bed ever since mainly fatigue but also really bad indigestion and chest/back pain. I was in hospital for seemingly unrelated issues I have developed some bone mets which were causing pain. In terms of the two treatments together for me it has been headaches and fatigue which is starting to improve and had issues from ipi with eating etc which has made me quite weak.

Jenny

Sorry for the delayed response I’ve actually been in hospital for the last week. I’ve recently had wbr for 40 brain mets at the same time as having the third dose of ipi. I’ve been pretty much in bed ever since mainly fatigue but also really bad indigestion and chest/back pain. I was in hospital for seemingly unrelated issues I have developed some bone mets which were causing pain. In terms of the two treatments together for me it has been headaches and fatigue which is starting to improve and had issues from ipi with eating etc which has made me quite weak.

Jenny

Sorry for the delayed response I’ve actually been in hospital for the last week. I’ve recently had wbr for 40 brain mets at the same time as having the third dose of ipi. I’ve been pretty much in bed ever since mainly fatigue but also really bad indigestion and chest/back pain. I was in hospital for seemingly unrelated issues I have developed some bone mets which were causing pain. In terms of the two treatments together for me it has been headaches and fatigue which is starting to improve and had issues from ipi with eating etc which has made me quite weak.

Jenny

Sorry for the delayed response I’ve actually been in hospital for the last week. I’ve recently had wbr for 40 brain mets at the same time as having the third dose of ipi. I’ve been pretty much in bed ever since mainly fatigue but also really bad indigestion and chest/back pain. I was in hospital for seemingly unrelated issues I have developed some bone mets which were causing pain. In terms of the two treatments together for me it has been headaches and fatigue which is starting to improve and had issues from ipi with eating etc which has made me quite weak.

Jenny

Sorry for the delayed response I’ve actually been in hospital for the last week. I’ve recently had wbr for 40 brain mets at the same time as having the third dose of ipi. I’ve been pretty much in bed ever since mainly fatigue but also really bad indigestion and chest/back pain. I was in hospital for seemingly unrelated issues I have developed some bone mets which were causing pain. In terms of the two treatments together for me it has been headaches and fatigue which is starting to improve and had issues from ipi with eating etc which has made me quite weak.

Jenny

Sorry for the delayed response I’ve actually been in hospital for the last week. I’ve recently had wbr for 40 brain mets at the same time as having the third dose of ipi. I’ve been pretty much in bed ever since mainly fatigue but also really bad indigestion and chest/back pain. I was in hospital for seemingly unrelated issues I have developed some bone mets which were causing pain. In terms of the two treatments together for me it has been headaches and fatigue which is starting to improve and had issues from ipi with eating etc which has made me quite weak.

Jenny

Unfortunately I was on zelboraf from January to April and it didn’t work. I had gamma knife on 5 lesions just before Christmas and they were going to treat about 10-15 new ones in April before they found so many on the scan.

On the plus side, been a great few weeks for milestones for me – my little boy is walking and turned a year old on Friday which is wonderful to see when you think you may not :-). Here’s to a few more milestones for everyone.

My next option would be temodar. I live in the UK and have private cover through a work policy but nothing else would be easily available as yet.

Jenny

Unfortunately I was on zelboraf from January to April and it didn’t work. I had gamma knife on 5 lesions just before Christmas and they were going to treat about 10-15 new ones in April before they found so many on the scan.

On the plus side, been a great few weeks for milestones for me – my little boy is walking and turned a year old on Friday which is wonderful to see when you think you may not :-). Here’s to a few more milestones for everyone.

My next option would be temodar. I live in the UK and have private cover through a work policy but nothing else would be easily available as yet.

Jenny

Unfortunately I was on zelboraf from January to April and it didn’t work. I had gamma knife on 5 lesions just before Christmas and they were going to treat about 10-15 new ones in April before they found so many on the scan.

On the plus side, been a great few weeks for milestones for me – my little boy is walking and turned a year old on Friday which is wonderful to see when you think you may not :-). Here’s to a few more milestones for everyone.

My next option would be temodar. I live in the UK and have private cover through a work policy but nothing else would be easily available as yet.

Jenny