We Talk Brain Tumours

thinking of you - best wishes

Hi,

I am new to this group but have been reading through the posts for a couple of days. It seems a lot of you are having a tough time, i hope you all stay strong, i cannot start to think about how hard it must be.

My story is: My husband got diagnosed with a brain tumour in May 2010 at the age of 25, he had a seizure in the early hours of the morning and had a CT followed by a MRI in the afternoon where it was confirmed something we hadn't even started to imagine. He was fit and healthy, playing football 4 times a week. He had no prior warning that he had the tumour so it was a massive shock. It was even harder as it all happened on our son's first birthday. We didn't get to see him that day. He had an op 3 weeks later to remove as much as they could and to find out what he actually had. Unfortunately they could not remove all of it and he was left with a large section of the tumour. We later discovered it was a grade 2 oligodendroglioma, it was slow growing so we decided to go ahead with 3 monthly scans to monitor growth and grade. All was going well and on the anniversary of his op we were on honeymoon in Kenya. However when we returned and went for the next scan, the results came back that something was changing but they weren't sure what. We went for another scan in Nov and it was decided that he would have to undergo Chemo or Radiotherapy. With the size of the tumour Chemo was the best option to start with. He will be taking temozolomide and is starting on Tuesday 10th Jan. 

I was just wondering if anyone has undergone this type of chemo and how they reacted while taking it?? At the moment my husband is constantly tired and has a number of seizures throughout the day. He works part time and when he comes home he sleeps for the rest of the afternoon. I find this really hard to cope with as i work full time + overtime. I also have to look after our son who is now 2 plus do all the housework etc. I am scared it will make him more run down and wont be able to help out at all. I find myself shouting at him and getting annoyed with him for not helping, following this i then feel guilty that i have just shouted at him for being lazy.

Hope your all keeping well

Zoe

Zoe,

I had an Oligodendroglioma grade 2 for 4 days, until I was upgraded to an Anaplastic Oligodendroglioma grade 3. I was lucky in that my surgery removed 'all visible tumour',  I breezed through radiotherapy and had a six week break before starting six cycles of TMZ (temozolomide), tablets for 5 days 28 days off (or something similar, my memory is BAD).

I was one of the lucky ones, I had NO nausea whatsoever but took the anti-sickness pills as directed.  The one and only problem I had was constipation.  Do not underestimate this, I eat fruit, veg, licorice and took senna oh and the lactoluse solution I was prescribed and yet still I wouldn't go for up to 5 days after I finished taking the tablets.  It was uncomfortable to say the least, made me grumpy and sluggish.  It actually worsened slightly as the cycles progressed but it was explained to me that chemo is cummulative  (sp).  Not sure I have any advice on how to avoid the constipation but then maybe I got it more than most!  I also had to take a low dose of steroids for the five days as I was one of the rare patients with whom the chemo made the brain swell.  Not as bad as it seems as the steroids kept the headaches at bay once we knew what was happening.

I still managed to walk to the shops everyday, although by the end of the week it was taking me longer.  I also went to the Thames Festival between cycles and walked the entire length twice over.

I hope that the chemo works well on your husband and significantly reduces the size of the tumour for him.

If I can help with anything else, please don't hesitate to add me as a friend or ask here :)

Zoe, so sorry that you have to join us here, but I wanted to welcome you.  We'll do everything we can to support you.

I don't have personal experience of your situation, but hopefully someone will be able to offer some advice.

It's a hugely stressful situation to be in and easy to lose your temper at the patient and the condition that's causing the stress.  If you have a Macmillan nurse assigned to you, then you need to talk about what's going on right now and ask for help.  You really don't have to cope with this all by yourself.

Zoe- Firstly just to say how sorry I am to hear about your husband. He is so young. As for Temozolomide, my husband was on it for six weeks on a low dose with his radiotheraphy, and then six cycles of 5 days every 28 days. He took the anti sickness pills as advised and only had a couple of days towards the end of his six month where he was sick. Consipation was a problem, and he took the medication provided by the hospital as directed which helped. He also had some insomina, which he found taking tart cherry juice helpful for.He went off some foods as well and found that Muller rice and yogurts was all he wanted some days. You sound like you are exshusted there. I find it hard enough trying to keep up with a full time job, and all the house stuff things, but you have a little boy to take care of as well. Are there any family members or friends that can give you some support and help? As Pete mentioned, have a chat with the macmillian nurses and see if they can advise you at all. You take care there.

Julie, Just to say you and Alan are very much in my thoughts. You take care there.

Thank you for your messages. I have a good support from family and friends who help out when they can, my mum has moved down from Cumbria to live near to help out with childcare and to be there if i need somewhere to escape from the house for an hour. From the start i have been positive about the situation, i felt that there was no point being down as we still had our lives to get on with. I think because all the scans had good results it came as a shock that he would have to have Chemo, we weren't expecting it. Also because everything was back to normal with work, family etc it was easy to forget sometimes and to me it just seemed like my husband didnt care, he would be moody and lazy and i blamed myself, but reading this site it seems like these are common problems linked to brain tumours, so i am now getting my head around that this is now going to be normal and i can't expect as much from him as before he was ill. We have a macmillan nurse assigned to us, i will probably contact her again for some support, it's just finding the time to fit it in.

Debs and Zanandu - do yourself or your husband suffer seizures before treatment? if so did they get worse whilst taking or improve once finished the course? My husband has a bad diet, he doesnt like fruit, veg or anything healthy. I may have to force him to eat some if he is going to suffer constipation. I've been trying for 7 years, im sure he can listen to me nag some more, it might sink in eventually haha.

Thank you again, hope you all are well today.

Zoe

Zoe I had a Tonic Clonic seizure in Nov 2008 which got me diagnosed, since then I have been on a low dose of Tegretol (Carbemazepin) as I was allergic to Phenytoin.  I have not had a single seizure since. (touch wood and all that).

Will your husband drink smoothies, fresh fruit juices? They will be better than not eating anything healthy.  I have noticed that most of the Americans on my yahoo bt groups, try reduce sugar as much as possible as they believe it feeds the tumours, what truth there is in that I don't know.  I don't take sugar in drinks anyway and if there are sugars in some of the foods I eat I am not too worried.  

To be honest you could run yourself ragged trying to keep up with all the things people do, some go organic, vegetarian etc.  I tried to use as much organic as possible when first diagnosed but to be honest, I no longer work and get no help other than DLA (which has been reduced recently) so we rely solely on my husbands wage and with three children (13, almost 16 and almost 18) we get through a fair bit of food each week, my two oldest are boys so add another half a weeks food on top to keep them satisfied come 8/9pm so its more down to cost for me, but I do shop daily so buy fresh.

I don't beat myself up too much about the food now, we have cut down on red meat but this is just a general healthier approach to food, my husband is a karate instructor and both my sons are blackbelts so pretty health conscious anyway.  I have put on a fair bit of weight but I think thats more to do with me not working (I worked with pre-school children, so a very active job).

You will find a new 'normal' and at the end of the day, you will do what you can and what you feel you have to, not what everyone else tells you to.  All we can do is tell you about your journeys, but you will find after you have been here a while, that they vary greatly.  Somewhere inbetween there are a few things that resonate with everyone.  Just read it all and take what you want or maybe try some things but know they may not all work.

I had my surgery at the end of January 2009 so I am coming up to 3 years, I am due for a scan next month, this will be my first one after they let me go yearly!  Fingers crossed, prayers, good vibes please :)

Hi Zoe

Sorry you are here but glad you found us. You have now joined that elite group of warriors called 'Carers'. It's a tough job, a really tough job. Ask for all of the help you can get. So many of us don't ask until long after we should.

LIke a few of the others my hubby had temozolomide combined with chemo and RT and then 5 days every 28 days. However, he had quite the opposite reaction and suffered from a terrible bout of the runs every time. We did not make the link at first and even the gastroenterologist at The Royal Marsden didn't make the link and gave Tony a variety of antibiotics and treatments. We were advised to give him codeine and Immodium which really helped. 

He has suffered from constipation at times too though. I changed his diet slightly to use more wholegrain rice, wholemeal bread and would put a teaspoon of linseeds in his yoghurt every morning which generally did the trick. I also went to a health food shop and got him some 'good bacteria' capsules which really help to keep the digestive system moving (same principal as Activia just a hell of a lot more bacteria). Drinking lots of water didn't do any harm either. He also takes Dioctyl (sodium docusate) in the morning and evening which is a very gentle stool softener and, if things still won't shift then he has Movicol which is a powder stirred into his water.

Like yours my hubby doesn't really have very healthy eating habits. To try to get around this and get him to eat his vegetables and fruit, I bought a juicer and juiced them raw! There are lots of healthy juice recipes on the internet.  He really liked that and found it much more enjoyable and a lot more tasty and quicker than having to chew horrible vegetables! His favourite was carrot and apple.

Fortunately, he didn't suffer from any serious side-effects with the TMZ apart from a little tiredness as he got towards the fifth cycle. 

He was suffering from mild seizures from a very early stage in his diagnosis and was given phenytoin. Unfortunately, he suffered an allergic reaction to this and ended up with a rash down his back and in his mouth and throat. He has been on Epilim Chrono (sodium valproate) since and hardly has any seizures at all now.

I hope all of this helps rather than confuses. I always found other people's experiences enormously helpful in getting my head around what was happening. 

Good luck and let us know how you get on if you get the chance.

Love

Pam

x

Debs

Good vibes and prayers coming your way now and every day lovely lady.

Pam

x

Pam,

So your husband and I were both allergic to Phenytoin........I was prescribed this at my local hospital after being taken in for my seizure to be investigated.  I  was smothered in a red, hot & itchy rash....god I looked like I should have rung a bell and had a piece of cardboard with the word "unclean" scribbled on it.

When I went to visit my Neuro-surgeon he asked if I was having any problems and I rolled my sleeves up.  He asked what I was taking and I gave him the packet as I carried it in my bag.  He threw them across the table and said "oh I can put you onto something better than this dirty drug" that has always stuck in my mind, which is no mean feat with my terrible memory! Mind you it was bs (before surgery).  I am now on Tegretol which is given to bi-polar people to help keep them on an even keel.  My husband says it has had NO effect on my mood swings whatsoever lol

Thanks for the vibes, all are welcome :) xx

Love & strength to all who want or need it xxx