We Talk Brain Tumours

Oooh Martyn, you ARE naughty!!   Warm wishes to you and Doreen all the other lovely people on this site. 

Sue is back in hospital after another fall which caused two fractures in her one good leg.  After all the MTX, her poor bones aren't strong enough for any pins so she's been casted and we'll see what happens next.  She's also been booked for an MRI on her back to see if the CNS has relocated itself there.  Her growing problems with paralysis have raised some concerns as to whether it's more than just the after effects of radiotherapy.  Despite it all, she's eagerly awaiting two new grandbabies in December and February and telling everyone she's expecting twins!  I bet that raises a few eyebrows, naughty Sue! 

Sending big hugs from across the pond.

Jill.

Hi Jill,  lovely to hear from you again.  Poor Sue, I'll give Jim a ring as soon as.  It never rains does it? Twins in December and February hey,  I bet the expectant mother will have more than her eyebrows raised!

Love across the water.  Doreen and Martyn XXXX

Katie,

A shame that you find yourself here but there are so many kind people here with great words of wisdom!

Your Dad's physical problems sound so much like my Dad's!  Once you get into the cycle of treatment hopefully there will be plenty of opportunities for you to ask the medics the many questions that you will have over the coming months. Please do not be afraid to ask them to explain things in, as I call it, "english I can understand!". I also had to think long and hard about what information I wanted to know, regardless of how good or bad it was - I went for the full information version and that is not an easy path to travel but you must do what is right for you.

The first couple of weeks/months passed in a complete blur for us but somehow you do find a "normality" again - I am so thankful for my children that I have to click into "mummy mode" at 4pm every day!  Because of my father's very rapid initial decline, we had to be completely honest with them very quickly and I have been amazed by their ability to cope with the information.

Everyone's journey on here is very different - and the only constant that I have found is that this disease is very unpredicatable - and sometimes the medics don't know the exact information that you might want.  My Dad was diagnosed exactly one year ago, come September he was in a hospice with a suggested life expectancy of a fortnight.  Last week he went and played golf - not well, but who cares!!!

If I can be of any help, please just shout.

Regards

Samantha

Hi

Not sure if I'm doing this right, so apologies to Samantha 43 if you end up with a private message!

My Dad has a grade 4 brain tumour, has had his radiotherapy along with chemo for 6 weeks. Unfortunately though his platelets are still very low, 90. He finished his radio 9 weeks ago, and chemo 10 weeks ago. He finished his chemo early as he had a very bad reaction to it, became very, very week and ended up collapsing.

Because his platelets are still low, the onc was hinting that they may not give him any further chemo treatment. 'Studies' have shown, apparently, that the chemo would be a waste of time, would only make him ill again, and is not worth putting him through it. I asked if there was any other chemo they could use, as obviosly this one doesn't suit him, and she said thare is one PCV, but they wouldn't give him that unless the tumour started to grow again.

I'm really worried, and concerned that they are 'giving up' on my dad.

Has anyone had this experience?

Thank you

Hello Fedup, Good name by the way. I'm sorry you find yourself here. But it's a good place for support and information.
I'm guessing your father didn't get on so well with temozolomide (temodal), That is often the best tolerated chemo. PCV was previously the chemo of choice but it is harder on the blood so, I know from experience, it's not really given when your father has low platelets.
But they can come up quickly from one week to the next so keep on getting it tested. I'm sure you are doing so.

I know it can seem as if they are giving up. But the sad truth is there are few if any treatments outside surgery, rt + chemo that have been proven to work in trials.

There are people who write here who were unable to have either debulk operation or no rt or shortened chemo and they have been well for a reasonable time.

There is ongoing research and many leads being investigated that look promising but it can be hard to get access to them. You would have to talk to your neurologist to see if there are possibly any tratements or clinical trials that might be suitable for your father. Don't be afraid to push them. But if the tumour is not growing I suspect they will want to wait and see how it goes.

I hope others come along in a while with some other ideas. This is just my experience. I'm sorry I couldn't think of anything more uplifting to tell you.

You  always read it here but make the most of every day you have together.

I hope things go very well for you and your Dad.
Best wishes,
CHxx

Hi Martyn and thanks for your replies, apologies to you and everyone who has replied for my tardy response but I have been battling with( and just vanquished) inner demons. Shock and denial has given way to acceptance and determination. Thank you for you kind words and good advice. We have appts tomorrow and Weds for another scan and mask 'fitting' (?) and I have a list of questions ready. I am so pleased to read that  your wife, Doreen is still giving orders! We're made of strong stuff us Welsh girls, do send her my love ( and you can pinch a bit too!)

Mandyr thanks for your reply.I'm going to call Dads' illness the stinky thing, because that's how I think of it. I commend you for offering continued support to others despite ( but I guess because) of what you have been through. I am sorry you lost your husband who I imagine was a strong man and a great father, ((hugs)). Dad decided to tell the kids last week and they sat and listened then went off and did kid things.They were told there is a lump that needs some treatment and I explained RT to the best of my grasp of it and we said we hoped Dinny (their name for him) would be able to talk better after this. No-one mentioned the C word-not that they would understand-but they are happily thinking that Dinny will be 'fixed' in a few weeks so they can continue aggravating him. You're quite right, until we know exactly what we're facing and how Dad responds, optimism is the way to go. It's what gets me through the day. I did a few little jobs around the house today I knew he wanted doing, nothing major but things he wants only ME to do (bless him he taught me everything I know re DIY) and he seemed happier they were done. I was happy he was happy but I can relate about wanting to scream out, I just feel so damn useless. I am sending you virtual hugs and a few spares for your babies (((hugs)))

Hi SusiiQ and thanks for your post, I am so pleased to hear that your husband enjoys a relatively normal life ( who defines normal anyway lol?) I appreciate you taking the time to respond and your positive words. I am hoping to get some more answers tomorrow. The oncologist is reluctant to do a biopsy and Dad doesn't want one anyway so I'll take their best guesswork. Doc has already said it won't spread and it didn't come from anywhere else so I suspect he he has a good idea what it is. Give your hubby a sneaky peck from me :)

Hi Crazy Horse and thanks for your reply. As previously mentioned the Oncolgist is reluctant to do a biopsy, and I think my Dad will refuse the MRI as he is claustrophobic, but we have another CT scan tomorrow. I did ask about chemo, but Dad's general health is not great and the doc said he would wait and see how he responded to RT and maybe run chemo alongside. Thanks for your kind thoughts and sending love right back at ya :)

Hi Sam and thanks for your reply. My PC had a wobble before I could reply to you in my last post :/ I am so pleased to hear about your Dad playing golf!   Just goes to show how little is really understood I guess. Not really sure if I have reached 'normality' again yet, a few things seems to be on autopilot, BUT we have things to do and people to see so just going to get on with it for now and see what happens. Thanks for your kind thoughts and give your Daddy a nice big hug from me :)

Hi Crazy Horse

Thank you so much for your reply. It makes more sense to me now. It would have been nice to have had that explained at the hospital - or maybe I just don't know what questions to ask. We're going back again next Monday, but I'm not holding out much hope. He has some really deep purple bruises on his arms that seem to just appear, so I'm guessing that his platelets are still low. The mac nurse says that they could be to do with the steroids. He's on 1 tablet every other day. I'm of the opinion that steroids are 'the devil' as the muscle in my dads legs have really gone, making him very weak and unsteady on his feet, however the Mac nurse just keeps telling us to increase them if ever we come across a problem - is this normal?

My dad had a 'good' day yesterday, so that always brightens our spirits. He usually has a sleepy day after a good day, so I don't expect we'll see too much of him today.

Thanks again for your support. Sometimes you just don't know where to turn and who to talk to and you just end up going round and round in circles with too much information and not enough head space for it!

xxx

Any one got any advice re travel insurance first hol abroad for three years but we have no insurance yet some wont insure H and there appears to be a range of quotes so if anyone has an advice that would be great. some wont even insure her for  anything related to BT. xxx

Dear Di

I'll call you with the company that insured Christie.

XXX