We Talk Brain Tumours

We have scan tomorrow to try to determine sudden decline in hubbys mobility/balance. Relief scan is here but dreading results-who doesnt? No results till next Thurs. Good luck all those battling. x

Hello everyone,

Mandy, not surprised you feel a bit frazzled! I hope you are bearing up. Fancy you and Peter going to the Trafford Centre at this time of year. 

Martyn, it sounds like things have been easier for you and Doreen which is good. I think you are doing a great job at the controls despite all these blumming leaves.

Well done Skeete for pointing people the right way.

Yin and Yang, a weeks a long time to have to wait for news. We wish you well.

We too have been having problems. Becky has had further recurrence and has felt a loss in her sensation and control of her right side. She has not used her right hand to eat for 2 to 3 weeks as she feels she can't control it. At worst, she also shuffles as she can't lift her right leg. Also communication is difficult. The scans also showed deterioration.

Becky has been on Avastin (6 months) with CCNU (8 weeks). Consultants are withdrawing CCNU, but plan to continue Avastin. They feel the Avastin is not holding back progression, but that without it, progression would be rapid.

They now propose using Irinotecan with the Avastin. I'm sure this is a shot in the dark. The evidence that this will give benefit is paper thin. Even if it works, it will only give short term relief, but it brings side effects with it. After a 30 month fight, it will be very hard to contemplate Becky losing her hair  for something that has little proven effect.

We don't yet know if this drug will be approved for her, and even if it is, we don't know if we want her to take it. We do know that Becky will refuse any further surgical intervention.

What we are hoping for is to hit a plateau, hang on until Christmas and then try and take stock.

We are talking this through with the two teen kids and Becky's sister. No one is in the dark.

Now I've put most of my cards on this table too! Hope it does not contravene any onboard rules.

Best wishes to all,

Martin.

Hi Martin,Sorry to hear of Beckys difficulties-it mirrors my hubby in the lack of control over his hand and leg. Its so distressing to watch isnt it? Hope whatever treatment is decided for Becky is the right one and gives her benefit. Its like living with a timebomb. Good luck in the coming weeks and sending strength to you all. You are right-every day is a fight. x

Hi all,

Y & Y,

I hope today's scan is trouble free.

Hi Martin,

Sorry to hear about Becky. Although I know absolutely nothing about chemotherapy medications I can empathise with you about the ups and downs of it all.  I may have spoken a little early about Doreen's remarkable recovery, but she is still quite reasonable and like you just wish for an even flow for a while.  Cards on table? that's what it's all about my friend, anyway while CH is away we can make them up as we go along. Please give her our best wishes.

Regards to all,

Martyn XXXX

Thanks Martyn-I hope so too. A week to wait for results will be agonising. x

Evening all – Hope you are all as good as you should be

Been trying to get to the computer since Monday. Jan’s bloods were OK, so now on to round fifteen of chemo. Valporate levels up a bit though (see later note to Martyn).

Y&Y – Hi

Hope today’s scan went OK – fingers crossed for the results. I tend to get super efficient when we are waiting for Jan’s results (or so I like to think). Just remember we are all with you for every minute until next Thursday (at least).

Martin

As Martyn said – that’s what this train is all about. I note you still have some cards hidden under the table. Wish I could share everything with my urchins, but at ten and seven I think it is too young and likely to cause more problems than it solves. Best wishes to Becky. Keep strong.

Martyn

Fingers crossed that Doreen’s improvement sticks. Interesting what you said about the Epillim Crono and standard Epillim. Jan is on Crono and after a few extra auras (conscious fits) her dose was increased to 1400mg/day from 1200mg/day. That seemed to do the trick for a while in early November. However, of late from last Friday she has gone back to having two to three auras a day. Previously these have not really distressed her, but they are beginning to do so now. Jan is lined up for an MRI at Christmas and consults with Oncology/Neurosurgeon/Neurologist in early January, so may know more then. If auras continue to pick up we may need to get her to the neurologist a bit sooner. Do keep me posted with Doreen’s progress though.

Feminine side coming through Ha Ha. Might be a dab hand in the kitchen, but it’s more of a Steven Seagle / Jamie style as opposed to Delia!!

Mandy

Please administer bromide in the next round of tea – think the drivers getting frisky again. You have been very quiet of late, hope you’re OK.

Dot – Thinking of you.

CH – Thinking of you.

Sandamali – Hope you’re finding some help/support here – do write it’s the only way.

GreenTree – Have you managed to get your Dad moved yet?

Best wishes to all – Robin.

Hi Robin,  good to hear that Jan's bloods are ok, onwards and upwards eh?

I shouldn't have opened my mouth, Doreen's improvement has now slipped into reverse. She has had 3 episodes today, she just seems to freeze and gulps and swallows, I try asking her how she feels and she just stares back at me rather vacantly and unable to answer me.  Her symptoms so much resemble what I've read are the actual side affects of Epilim!  I was contemplating stopping the Epilim completely and see what happens, she has been on them for 6 years and didn't have a seizure before that so they were presumably a precautionary measure?  I don't really have the bottle to stop them so I have arranged an appointment for us to see the GP on Saturday am, I will ask her if she agrees to stopping to see what happens, if not I will request smaller dose tablets, we currently have 500mgs, so I can reduce?  I will play around with tramadol and paracetamol dosage, but I don't have the knowledge or experience to mess around with anti convulsants.

Is there a blood test or whatever to check for valporate levels?  If so she's never had one. It's just strange how the change and reduction brought about such an improvement for 2 weeks. her right hand is now shaking when she walks, very flushed complexion and very tired. Doreen has complained of tummy pains the past 2 days as well, which could also be a side affect,  can't everything??? It did worry me when Doreen complained of her tummy though, the last time she did that was about 6 years ago and her bowel had ruptured, what a nightmare that was.  I will keep you informed and let you know if the GP comes up with anything.  We are seeing a fresh one as ours retired last month, so hopefully new broom?

Regards to all,

Martyn XXXX

Robin-thanks for your thoughts. Scan done today ok so just the dreaded wait for results. Good to know my friends on here are with me.

Martyn-sorry to hear of Doreens problems. My daughter was on Epilim when she was five for epilepsy. Maybe the episodes you describe are petit mals(small fits). Sorry if Im teaching my Grandmother to suck eggs!. Just trying to throw light on such a frustrating problem for you both. Hope your GP is a help and you can get back on track(no pun intented!) Good luck to you both. x

Martyn and Doreen - Sending you both a big hug xxx

Sorry Martyn I meant -no pun intended- but couldnt find  how to edit it! Im so not good with these new fangled things called computers. Would it help if I was blonde? x x