We Talk Brain Tumours

Spoke a little too soon,  wishful thinking maybe?  Here we go again.

Oh no Martyn. Thinking of you both.

Sally

Hi Idreamoffigi

My husband is on PCV (just on 5th cycle) as he didn't like side effects of tmz and after radio with tmz his tumour had grown about 1cm so this is why we changed.

We start anti sickness on 1st day 2 tablets 3 times a day (can cause constipation) so plenty of tinned fruit etc

Same as Peabs, bloods taken then if all ok, have the canuala drip on first day (only takes 10 minutes to administer) takes longer to wait etc.

Blue tablet (nasty one) on the next day (my husband has had sickness with this one a couple of times usually kicks in 4 hours after taking and lasts for two hours (bile/phlegm) etc.

3rd day we start the white tablet for ten days - Peabs has put the techical name.

Overall, obviously it has it's toll but my husband has coped quite well albeit gets very tired so best thing for us is for him to go to bed for a while rather then fight it.

Last cycle he kept his strength which helped us due to his mobility problems (see profile).

He has now started to take the white tablet at bed time and naturally sleeps through it.

Each cycle has been slightly different and after the third cycle the tumour had stayed the same size so assume treatment is working.

Before 4th cycle, platelets down a bit so delayed 2 weeks and after this cycle he had slight anaemia, so he has just been given a couple of units of blood so hopefully this will help with the breathlessness and dizziness.

Let me know if you need anymore help/info

Take care

Ann x

Hello Idreamoffiji

My daughter has just finished 6th cycle of PCV - similar to Ann B's note, TMZ wasnt too effective. Her PCV schedule was different:-Lomustine (blue) on day 1, Vincristine infusion in back of hand cannula on day 8 and started 13 days of procarbazine pills day 8 too. Final vincristine of cycle day 29. Sam had virtually no nausea from the chemo but she took Ondansetron 8mg twice a day continuously and always took the pills very last thing at night. Low platelets needing transfusion after last cycle and still low counts 2 weeks later. Chemo is cumulative in this way. Good luck.

Maggie

Hi everyone

I have only been on here since the beginning of the month and have not been on recently. My sister, Lyn, was taken into hospital on the 16th April after having a seizure and was told she had two glioblastoma tumours. They started with steroids and things seemed to get better. Then she had a biopsy, things got worse. She came out of hospital and things seemed to get better although she had trouble with the control of her right side. Then she had five days of Chemo in tablet form. The last day of treatment she was very ill, in and out of consciousness, seizures, loss of control of her right side. Again it was back to the hospital.

I live in Belgium and was being told all this by phone,the 13th May I got a phone call at 9.30 in the evening from Kriss my nephew to say that the doctor said she might not make it through the night. We left as soon as we had packed a case and arrived at my Dad's house in Hinckley at about 10 in the morning.That was Friday 14th May, we went to the hospital about an hour later. Lyn was in and out of consiousness only nodding or shaking her head in yes or no. Did she know we were there?

The next morning my brother-in-law came home to have a shower after spending three days and nights at her side, that is when we got the call to say she had gone. From then until about four days later everything is a blurr. Then the anger set in, if the doctor's had been honest with us we would have gone over as soon as we knew what was wrong, but they led us to believe that they could treat her and we had time. My brother-in-law was angry also because he went back to work for two days that he could have spent with Lyn.

My Dad is 81 and is strugeling to come to terms with losing a daughter just 3 years after losing his wife(my Mum), as for me, I feel as though I have a huge hole inside me that nothing can fill. My brother-in-law is the worst of all, he keeps asking if he could have done something or should have seen signs that she was not well. Right now I feel as though I want to cry, shout, screem, hit something or someone, but above all blame someone for what happened to Lyn. I know it's wrong but I can't help it.

Hello Terice,
My condolences for your loss. I know there is nothing anyone can say that will help how you feel.
Brain tumours are such a difficult law unto themselves. The effects are unlike other tumours and perhaps a little more akin to motor neurone I think - though I have not had personal experience with MND. That doesn't make it easier to cope with and especially  when things happen so suddenly as they did with your sister.

I'm no expert but I don't believe any other tumous can have such devistating physical or cognative effects as tumours in the brain. Simply because of the brain being the control centre and there being no extra space so any growth or extra swelling can have knock-on effects that cannot be predicted.

But you know all this I'm sure. Living far from home is indeed hard. I live in The Netherlands and I know from when my mother was ill in the UK with Parkinson's that decision to stay or go is so hard when there is no definite information.

I've gone on too long. I wish you strength to cope with the time ahead. However and whenever it happens, it's always too soon; to young, as with so many bt patients.
Best wishes,
CH

Terice, I am sorry too for your loss.  As CH quite rightly says, brain tumours are so very hard to predict.  I know things won't help you just now but in time I hope these posts will - my personal gut feeling is that all doctors do their best with the best of intentions but because of the complexity of brain tumours they often get it wrong.

My own personal circumstances meant that we were told my husband may die tomorrow, next month or even next year.  Everyone knew his difficulties and problems but nonetheless his death came as a shock to absolutely everyone.  The doctors were in shock - it unravelled in a matter of days - he went from being as well as he could be (infact better than he had been in the previous months and was like he had been a couple of years earlier in the illness) to being so critically all treatment was withdrawn - all within a week.  I had doctors visit me in their own time, phone calls and letters of shock.  I know this doesn't change anything for you but what I am trying to convey is that even when a patient has been under close care for over 4 years the medics around him still got it wrong.  I do think people didn't listen to me well enough but I do know they meant well, just that they don't understand brain tumours, that everyone is so unique - the palliative care consultant actually stated to me when he joined in with my husband's care that he was going to find this situation very complex, that other tumours in the body follow a 'typical' path which they can usually predict and even if that changes they can usually cope, however brain tumours aren't like that and he wouldn't be able to predict what would happen next.  I think you will find that many people would agree with this statement, both carers and doctors alike.

I hope these posts help you to overcome any guilt.  Remember the doctors didn't know so therefore you couldn't possibly have known, you did what you could with the information you had - all of you.  I had looked after my husband for over 4 years and gone through many critical moments, got him the right care and returned back home until the next episode - however, this final time I didn't see the end coming and it pulled the rug from beneath my feet.  Your sister wouldn't want anyone to live with guilt - and also remember that this illness is dreadful - you have to consider the effects of treatment and how the tumour would have affected her life.  Hard as it is for so many of us, for you in your circumstances you have to consider what Lyn would have wanted - a period of hard treatment or to quickly pass away.  We all want our loved ones back and live with the hope they will beat the disease - but it is our loved ones that go through the traumatic changes they have to endure with this disease.  A friend of mine was told her husband's tumour was gone, it wasn't but they lived life to the full for the next few years.  He was well and then died quickly but she is happier they lived in ignorance because this ensured they did things they may have not have done had they have known.  Perhaps this is something you could hold on to when remembering your sister.

Again I am sorry - perhaps you would consider seeing a counsellor to talk through your emotions.  I have and I know it has helped me enormously.

Take care x

idreamofFigi, Wow and well done to you for raising such a large some of money, and yes you should feel proud of yourself.

Avak, sorry to hear about your best friend it's really tough but you will get support here when you need it.

Suetoy, sorry to hear about Petes decline it must be getting really hard for you right now so a big hug for you.

Martyn, I'm sure Doreen will rally again, but sad to hear she is so up and down at the moment.

Terice56.  i hope you pain will soon lessen, it's very hard when your loved ones live so for away.  I lost my mum and brother within 5 months of each other last year, they lived in Australia and I live in Turkey,  I never got to see my brother before he passed as the BT was very rapid.  Sadly Doctors can only do their best but much is being discovered even as I write and I hope it won't be too long in the future before this BT is tamed.

Mandyr, I can only say that your post a fantastic and said it as it is, well done for explaining so well.

Love and Hugs to everyone xxxxxx

Hi Terice  So sorry to read of your loss. Wise words from both CH & Mandyr and there is little I can add other than to agree about the unpredictability of this horrible illness. My husband was admitted yesterday to the Hospice and one of the first things the Hospice Dr said to me was that Grade 4 Glioblastomas are very, very hard to predict or read how long a person may have left. It is always hard for the family when someone they love passes away so quickly and natural that they question why & how it may have happened or perhaps been better handled by the medical profession but hopefully some comfort can be taken that your sister did not suffer for a long period with what is a truely cruel and totally devastating illness. Take care x

Martyn so sorry about Doreen. x

Best wishes to all

Sue xxxxx

Thanks for your kind words Turkishgirl.