We Talk Brain Tumours

Robin,

You are obviously a chosen one!  Have you been able to find the sender and correspond?

Martyn.

Martyn

I have found Sandamali on "People" but not where she originally posted; so will PM her.

Robin

Robin,

I've managed to find her profile, they don't make it easy do they?  Doreen's is an anaplastic astrocytoma, not the same, but if there's anything I can help with?

Martyn

Martyn

Well I sent a Friend Request (I think) hours ago (can't be certain as you don't appear to get a slot to say Hi, nor does it seem to flag up anywhere as pending); will just have to wait and see now.

Robin

PS - I expect it is just me.

Morning all,

Robin,  let's hope you get a response otherwise we'll have to drag the blond back!

I wish you all the best of weeks.

Martyn XXXX

Morning all - monsoon season down here today; had to take the healthy urchin to school in the amphibious vehicle.

Martyn - Think I may have cracked it. I found Sandamali's post (by searching the site for "anaplastic" and have replied with the usual directional suggestions to WTBT - I have a suspicion that Debs has the same thing (or at least I found "A Debs" with the same thing).

Oncology today - just bloods and more TMZ if all goes according to plan; after August, very nervous about Jan running a temperature !

Best wishes all for the week - hope the rain stops soon, or the loo will be backing up - oh joy. (Some will remember this problem from last year).

Robin

Well done Robin, could it be your feminine side coming out?

Sorry, but it's a beautiful start to the day here, cold, sunny and dry. In the old days it would have been the signal for long, long walks for us both and maybe ending with a pub lunch. All the very best for a good visit today.  I will post a message later about Doreen's very big improvement over the past 2 weeks after a change in medication. 

Take care,

Martyn

Just in case this rings a bell with anyone.
Doreen had been causing some concern over the last 6 months or so, her long term memory had now departed along with the short term, her mobility had shown a marked decrease and she was unable to ask a question, having forgotten what she wanted to say before she had spoken .  The major concern was she was having up to 6 small seizures a day and the recovery time was getting longer, but she was not getting any headaches!.
The neurosurgeon arranged an MRI scan, but the tumour had not progressed.  I asked to see the surgeon  and requested an appointment with a neurologist , we saw them both together on November 17th.
The neurologist was very thorough and seemed genuinely concerned.  I told him that it was most probably a coincidence, but Doreen’s decrease seemed to start when we switched from Epilim to the Epilim Chrono slow release and increased the morning dose, she was on 1000mg am and 500mg pm.
He suggested reverting to the original Epilim and returning to the old dosage of, 500mg am and 500mg pm.
If that didn’t show any improvement he would introduce Keppra although they also had side affects.
Well! I sincerely hope it isn’t another coincidence, but the improvement in Doreen over these past 2 weeks has been remarkable, I have booked a call with the GP for tomorrow.
Her seizures are nil or 1 a day, recovery a lot quicker, her mobility has improved and CH couldn’t believe the difference when she had a conversation with her the other evening. A brightness has returned to her eyes.
I don’t want to get carried away after just 2 weeks, but interesting don’t you think?

Best wishes,
Martyn

Hi Martyn-thats fantastic news-well done you for being so observant. Its good when the consultants follow our observations!. Hope Doreens improvement continues. We have slight blip in that my hubbys headaches have returned and his mobility is getting increasingly worse. A real shock as he was doing so so well but we are well aware of how things can detiorate quickly. His onc increased his steroids to 4mg daily as he thinks  this blip may be due to oedema. Unfortunately no improvement so he has bought MRI scan forward from January to next Thursday with appt the following Thurs for results. Hubby has had two falls over weekend so today they increased his Dex  to 8mg to try to help until scan. Im glad things are improving for Doreen. Its such a worry isnt it and heartbreaking to see them struggle. Havent experience of anticonvulsants but good luck with your new strategy. x x

Hi Martyn.  Me again just popped in to see you all all behaving yourself.. some chance..  Glad to read that Doreen is feeling a bit better.  It's strange we have to tell the doctors whats what. I know it really suprised me when Terry was ill the doctors expected me to decide on what medication to give him., But as usally I knew best..  Hope everybody is as well as can be expected.  I will pop back from time to time.. its really hard to leave you all behind..

love Jenny w