We Talk Brain Tumours

Hi Zanadu,

I don't read very often now but will always pop back to see if I can help with any queries.  Like Steve G managed well on temozoladine (also on Keppra) after his first debaulk but when the monster returned they would only offer PCV.  He didn't cope at all with this.  He was left confused and wiped out.  Unfortunately we had to abandon it after the third cycle because he was unable to tolerate it.  I wish now that I had fought for theTMZ. They said that he couldn't have it again because it had not proved successful but it did halt the tumour for 5 years surely that was a success!  Anyway, my thoughts are with you, stay strong, it's a tough tough road. x

Anne and Kathy, can't help but fingers crossed for scan results x

Ange xx

Ange- thank you for your reply.  Steve was allowed to go back on the TMZ- he did two cycles but unfortunatly the TZM didn't stop it from growing and it actually went from a few cells of regrowth to a bigger tumour than before in just 4 months. He had 2 more cycles of TZM then the scan showed that it hadn't worked. I think where TZM works in Steve is that because he had a complete resection the first time, the TZM with the radiotheraphy worked the in the first instant but it didn't work when the regrowth came back and it was expected to work on its own. I wonder if he had continued to stay on the TZM for a year instead of the 6 months whether or not he would have had a different responce? The way you describe G is how Steve is at the moment. Thank you so much for that feed back. I am resigned to the fact that he may not complete the 6 cycles that they hope he can have.We will see how things go day to day.

Anne- you mentioned about keeping my mother in law in with things- I realise how important that is. I feel so much for her. Its 10 years ago since she lost steves dad and I know she is finding it hard but she just keeps on for us. She comes by at least once a week and phones nearly everyday.  Thank you to you and Kathy for reminding me of the importance of that.  Anne, I was really shocked to hear that someone said you should be grateful that your son is 28 and not a child! I can only hope it never happens to them. It doesn't matter how old your child is, they are still YOUR child. My husband is 52 and we share two wonderful adult children and we are aware of how fortuate we are. But I see the pain in his mums eyes......its so hard for her. Thinking of you and Kathy very much.

We did manage to go for a slow small stroll on a beach today not far from us and it was lovely and blustry and we enjoyed some sausage and chips in a beach side cafe. It was lovely.

Here we go again.

The Temodal hasn't worked. The tumour is growing aggressively. Dan is to have further debulking and is starting PCV.

He has been asked to participate in a new clinical trial, it won't benefit him but may help others in the future.

God help us all.

Goodnight

Anne x

Strength and peace to you, Anne, I so wish there was more we could do to help you.

To you and other's on the journey.  we (the We Talk Brain Tumours crowd) have a Facebook group (invitation only and private) where we can chat and share with each other.

If you'd like to join there, just send me a message with your email address and I will add you on Facebook and add you to the rest of the group.

Hello everyone, I read about this group elsewhere on the site and thought I would introduce myself. I think I am going through the beginning stages of what a lot of you are further down the road with.

My partner had a seizure almost 3 weeks ago and has since been diagnosed with what they believe is an oligodendroglioma, in the frontal lobe. He had no other symptoms. He is scheduled for surgery in 2 days from now in which they hope to remove as much of it as possible. He is 39 (I'm 38). We live in London and have no children.

The past 3 weeks have been a whirlwind of tests and being told information that still seems unbelievable at times. There has been quite a bit of denial going on. My partner is very scared but otherwise he is doing ok and has not had further seizures (he's on Keppra).

I feel as if our life is over but am trying to stay strong for him. It's very difficult for me not to think and speculate about the future, as then all I see is the downward spiral towards his death. I can't bear to think about it. Thinking about the surgery in 2 days time is more than enough for anyone to deal with. I know he will probably never be quite the same after that. This is likely to be followed by chemotherapy & radiotherapy but again, what's happening right now is enough to be getting on with.

I've started a blog to keep friends updated and keep myself sane, it is helping a bit. It gives me something to do, anyway. I'm working at the moment but today is my last day for a while as I'll be looking after him.

That's probably enough for now!

Hello Jill.  so sorry that you're here to join us, but you're more than welcome.  We'll do what we can to help you cope with this terrible journey that we've all be a part of.

I know this is really hard to cope with, but you all have time to gradually take this on board.  Try to approach each day by itself and go from one event to the next.  Trying to keep the big picture in your heads at any one time is an enormous strain.

After some time, you will learn to accept what's going on.  When you've reached that stage, things will become an awful lot easier for you.

Try not to think of your partner's death.  You have time to be with him while he lives.

Keeping a blog is a great idea, but you need to keep in mind that you will gradually fall into a state of talking about things that will be normal for you (and we all understand here), but may be upsetting to people outside of the inner circle.

Many of us have found it very useful to have this place here to talk about things that you might not want the rest of your friends/family to know about.

The important thing for you to know is that you're not alone in this.  People have gone through this before and are here to support you.  Throughout this process, you will undoubtably discover a love for your partner that you never thought existed before, many of us have taken that as a (unlikely) positive outcome from cancer.

I was told at the start of my own journey "You can only do your best, but your best WILL be good enough".  I lived by that mantra and it helped me so much in knowing that I could trust in my own abilities.

You have our love....

Hi Pete, thanks for your response. My blog is in its infancy but I am trying hard to keep it 'light' (as light as a blog about a brain tumour can be). It is not the place for in-depth medical information, but more for daily musings (good and bad).

Here is more the place for the grim and the nitty gritty of the treatment and recovery process, so I am very glad that I have found this site.

You're very welcome, Jill.  There's also a Facebook group that's even more private than here if you feel you need it...

HI Jill....welcome and sorry you have had to join this group.

Pete, myself and some of the others who have reached the "other side " in the past year still read and on the odd occasion post. This site was a lifeline for us when things were bleak and I hope it will be for you and the other new-comers too. You will find that you can say the things that are left unspoken with partners,friends and family members....and some of our group have a wealth of knowledge of the medical aspects gained the hard way.

As Pete says..take each day as it comes. Dont dwell on the future..enjoy the good days with one another and make the most of every one. Ask for help and dont try to cope on your own. The wheels of Social Services turn very slowly....get things in place before they are needed.

I just skimmed your blog but being a fan of Homeland too....I can tell you that I set up a baby monitor ( the one with the camera ) so I could keep an eye and ear on what was happening!

Much love 

Cathi x