We Talk Brain Tumours

Thank you all for your replies. Our oncologist rang back but he says he is unsure what is causing the problem. We have clinic tomorrow for scheduled Vincristine so will talk to him more about it then. I am worrying of course that something is changing as these symptoms are so different from others she has had. Sam has not been on any steroids since November and would really hate having to go back on them if that was suggested - they caused so many side effects. Initially when I told him the symptoms he was thinking of putting her on aspirin then decided against it - isnt this normally a treatment for a bleed or stroke?  He has also mentioned another scan, but last one was only 6 weeks ago, so not due for another 6 weeks. Hope to have more answers when we go in tomorrow. Meanwhile,everyone take care.

Maggie

Hi Maggie

I have just been reading an information sheet about PCV that our hospital gave us - taken from Macmillan site - information.

One of the possible side affects is Numbness and Tingling in hands and feet.

It says that it is due to the effect of vincristine and procarbazine on nerves and is known as peripheral neuropathy.  You may have difficulty in doing up buttons etc. Inform your Doctor if you notice these side effects.

It may be worth mentioning it tomorrow

Take Care

Ann

Hi Ann

Thanks for that, just had a look too in case they also mention the speech probs. If it was just the tingling and numbness I wouldnt be so concerned as she has had those feelings for some time, but the fact that it has more recently affected her face again to the point of drooping on the one side and the newer speech prob makes me question if it is the treatment, or something else.  Also I am wondering why these tingling and numbness feelings were on the right side this time.

Sam is taking Gabapentin for peripheral neuropathy and has been on this since June/July last year when they attributed the problem to post radiotherapy neuropathy. At that time she was on TMZ. They have been trying to reduce her dosage since mid Feb as the Onc says she is on quite a high dose (600mg three times a day). Originally our Onc suggested it was this reduction in Gabapentin that was causing the worsening problems, so he adjusted the dose back up to the top., but this hasnt had any effect. 

Today he suggested an EEG to look for any abnormal activity and maybe an MRI of blood vessels. Meanwhile I am resorting to the old fashioned method of crossing my fingers that it wont happen again!

Thanks so much for your info - I really appreciate it

love Maggie

Hi all,

I just spent half an hour writing a long post as reaching the 2 year anniversary since the start of our journey seemed like a good time for it but as I have done far too often before, I managed inadvertently to touch that magic key whose whereabouts I have yet to pin-point, you know- that key that makes everything you have just written vanish into the ether. Grrr! I know it's my own fault for not doing it the sensible way of writing in Word first. I can't face doing it all again so for now I will just stick my head over the parapet to say hello again and to send love to my dear friends.

xxxx

So useful those 'delete everything I have just spent ages doing' buttons Sue :(

But it's so good to hear good news. That you are two years on and just had a lovely holiday abroad together. I know that's not saying things are always easy but it's a fantastic achievement and shows that, slowly, things, medicines, techniques are evolving. Too slowly of course - but I know your mail will give inspiration to many others at the start of this journey.

xx

Hello Everyone

Just a quicky, Dad is having his plastic mask made today at Nottingham City Hospital and then next Tuesday he is having a CT scan.  Do you think he will start his radio soon?

It is scary but at least things are moving forward no, just keeping everything crossed that the treatment will work and give us some extra time.

Hope you all get to enjoy some of this lovely sunshine.  I am basking in it through my office window.  Ah well its Friday and I have a nice weekend planned with friends.

Bye for now xxxx

Hello LDW,
I think you said earlier that your Dad's rt is scheduled to start in early May?
I expect he will get his timetable soon if the mask is being made. RT departments try to set up a schedule so that, as far as possible, your Dad's treatment will be at a similar time each day.
If  you are worried I'd ask the doctors to confirm.
Best wishes,

Hi Sue - just needed to jump on and commiserate with the loss of your post - I think you can imagine the length of some of my posts which I have lost at a touch of a mysterious button!!!!  Actually I don't always press a button - somehow my left hand touches the pad on the laptop in a particular way and hey presto it's all gone!!!!!

Good to hear from you and as CH says your journey must give people hope.  Take care xx

Hi to everyone else, hope all is as well as can be.

We have had some further bad news which has caused the past 6 weeks or so to be extremely worrying.  My eldest daughter has been diagnosed with a bone tumour - hopefully it will be benign but a confirmed diagnosis is yet to be received from a specialist centre.  Obviously this has brought back those feelings of anxiousness that we experience when we are having one of those dreaded consultations.  The sick feeling in the pit of your stomach when the adrenalin starts to flow.  I didn't realise how I had put those feelings away somewhere, I didn't expect them to be dug up so soon.

The orthopaedic consultants have been taken aback by apparent assertiveness.  They obviously didn't realise that they were speaking to someone who had had to make the NHS work for them so was used to picking up the phones and speaking to whoever was going to get the ball rolling the quickest. I did have to smile to myself when the consultant asked me to repeat, twice, how I had got Katie referred to the specialist centre without his say so - he responded by stating that although this is what he would have done he wouldn't have expected a patient to have done so!  It did make me think that I might be treading on toes (luckily our GP is very understanding!) but hey who cares!!??

Unfortunately (or actually is this fortunately, not entirely sure?) doctors may only see one of these cases in their whole working life (ring any bells?) so they are not aware of the protocol - which is fine but is something that BT made me realise, that doctors can't possibly know it all.  If I hadn't done my own research I wouldn't have know that it was essential my daughter was seen at a specialist centre to ensure correct diagnosis.  It has made me realise how blindly we went into Peter's BT operation and how I wish we had made ourselves more aware beforehand - of the positives and the negatives and the possible repercussions.  How we were totally niave of the NHS system full stop.

Well my friends, off to stand at the ironing board or off to start on tidying up the garden - choices huh?

See you and as always take care of yourselves xxxxx

Hi Susan206

I have just read your profile and feel that our situation is very similar to yours albeit my husband was diagnosed in May 2009.

Similar to you, we met in 2002, married in 2004 and got this devastating news in 2009!  It seems that you meet your soul mate and they then want to take him away from you.

I didn't realise that you can get a 2nd tumour after the biopsy - they seem to neglect telling you all of the risks!  Steve had his biopsy in QMC but we go to City for treatment.

We started chemo again yesterday (PCV) as my husband couldn't get on with TMZ.  It feels like a vicious circle and doesn't get any easier.

It is encouraging to see that your husband is still fighting it 2 years on - I do feel that frame of mind helps to beat it.

Take care

Ann x

Hi LDW

Your Dad is in good hands at City hospital, even the people who make the mask are very nice.

He is probably having the cast done today and then they make the plastic mask from this mould.  Your Dad will then go back for the final fitting and in the meantime, all of his prefered times will be sheduled by the RT staff.

I would imagine that he will start RT in about 2 weeks time.

Hope this helps a bit

take care

Ann x