Recurrence - Now a butterfly GBM ,

Sih, I am very sorry to read your account. What you describe bears a similarity with my late husband’s recurrence. In his case, the tumour, which was originally in the right temporal lobe actually recurred just into the left hand side, in the Corpus callosum. It wasn’t described to us as being a butterfly, though I did at the time of diagnosis inevitably find myself reading about it because of the location.The recurrence likewise became apparent about three months after concluding chemo.

In our case it proved resistant to treatment. As you say, it is inoperable in that region though we did have 2 cycles out of 6 scheduled on vincristine and two other chemo drugs. One of these was intravenously delivered and the others were in tablet form. They were tolerated well but unfortunately my husband deteriorated quite significantly with mobility and cognitively and we moved on to palliative care, which was excellent. My husband was able to remain at home with the support that was put in place. 

I hope you receive the information you need soon; it is so hard waiting.

Ax

HI Slh

so sorry to hear that scan results were not what you had hoped for.

As far as I know, G's last scan wasn't classed as a butterfly tumour. The oncologist appointment following that scan in Feb 2023 was a video call so we never saw the scan images. The scan from 3 months before had shown at least 4 new small growths but by Feb they had all joined up according to the oncologist and were progressing either towards the brain stem or round the back of the brain towards the other hemisphere. He said he felt G only had a few days/couple of weeks if it went to the brain stem or a few months if it went round the back. What it did was academic as we were passed off into palliative care at that point. In the end G got eight more months before his journey ended peacefully at the end of Oct 2023.

Sorry if that is hard to hear but my reason for going into the detail is to follow it up by saying that being handed over to the palliative team was the best thing that happened to us as a family throughout the three year GBM journey. It meant I had a local telephone number I could call 24/7 and know that someone was there to help - that alone lifted a huge weight off my shoulders.  It also meant that as a family we got to know the local community nurses and the local community hospice nurses. Initially it was monthly visits then as time went on they increased to fortnightly and latterly were weekly. When the end of the journey came we were surrounded by people who knew G and knew us as a family and that made such a difference. So if the follow up appointment to discuss options offers this then it is not the worst thing that could happen.

I'll also share this community blog with you (+) How do you prepare to hear the news? Getting the results with member Wee Me - Macmillan Online Community

Sending you love and light and positive vibes and hugs

Wee Me xxx

Thank you  

Thank you  

My husband has been offered lumustine , I think this is a fairly standard one for recurrent chemo.I believe the speed that it might be recurring was a factor in giving him something straight away and he should receive this next week.

Luckily he seems to forgotten most of what the Dr said and we went to his favourite pub and he saw some of his friends across the room and said they are all retired and that's what he'll be doing in few years.

Hi Slh, 

Lomustine was one of the three chemo drugs that my husband received when his tumour recurred, the others bring vincristine and procarbazine.

For the most part, my husband didn’t seem to realise the seriousness of his situation and adapted to his worsening symptoms. Likewise, I can remember an instance where he simply forgot a conversation with a doctor about DNRs.

My husband was 67 when he passed away, 16 months after diagnosis but he talked about what he would do at 70 when we all knew that he wouldn’t see that age. All that unawareness in the later stages proved to be something of a blessing.

I hope the Lomustine makes a difference for your husband.

Thinking of you,

Ax