Oligodendroglioma

[Maya]

I am keen to chat to anyone who cares for someone or has an oligodendroglioma. My husband has one in his right frontal lobe. He was diagnosed in January 2004 and also operated on at that time. They weren't able to remove all of it as they were concerned if they went to deep he would be paralysed down his left hand side. In 2007 a new tumour was found to be growing into the cavity of the old one. This tumour has been monitored by 6 monthly MRIs so we live from MRI to MRI. He is on anti seizure meds and also takes some very strong painkillers for the daily headaches he suffers from. Would love from others about their experiences with this very challenging journey.

[Dotty_and_Rex]

Hi Maya, although I don't know anything about oligodendroglioma I care for my husband who has terminal inoperable small lung cancer that metasised to other parts of his body,mainly his brain. He suffered from dreadful seizures and will be on anti-seizure medication for the rest of his life and also takes strong pain killing medications to help relieve his pain.He had palliative radiation treatment to reduce the brain tumour and this seems to have helped him a bit.His 1st line chemo treatment failed and we are devastated,he is seeing the radio-oncologist to see if he can have palliative radiation on his chest and spine. This cancer journey is incredibly difficult for those who are close to the sufferer.Although my husband has deteriated to the stage of nearly giving up all I can do is make sure his Quality of Life is met by his standards and wishes not anyone elses.At the moment he is so tired he has lost interest in most things including having a beer or two each day which I find so very sad.I sit with him and hold his hand and gently stroke his forehead and tell him how much he is loved. You can only do what you can so don't forget to take care of yourself including crying or expressing yourself when needed. Gently gently does it. Dotty

[Nic41]

Morning Maya I have just joined the group and your post came up in my search, my husband has anaplastic oligodendroglioma, he was diagnosed after a massive seizure in april of 2010. He has just had his second tumour removed in feb this year. he has partial right hand body paralisis due to his tumours being remove from the left of his brain. His tumours also are coming back in the dead space. please feel free to chat personally if you don't want to do public posts.

[Maya]

HI Nic, Great to hear from you and welcome to the group. You sure have a challenging journey with your husband and I feel for you. Do you have close family/friend support? We have no close family living here so I have found that abit hard as the years go by. I do, however, have some great friends who keep me sane although sadly alot of my husband's friends don't know how to deal with the cancer and stay away. He has become quite reclusive and worries about going out etc. In the last 18 months our lifestyle has changed alot due to his reclusiveness which is hard as we have an 11 year old daughter. Still having said all that he still goes to work and his employer understands the situation so when he's not feeling well he can go home. Does your husband suffer from really bad headaches as this is one thing Rik has on a daily basis and the neurosurgeon says he doesn't know why. They think it could be the painkillers he's on but because he also suffers from chronic pain in his neck and back he's needs to take them. Anyway thanks for getting in touch and hope to hear from you soon.

[Nic41]

Hi Maya No we live is a small area so not a lot of help we have wonderful neighbours who help out heaps, I still have some freinds who drop out to see us, one has just finish a similar journey with her partner so thankfully i do have someone i can chat to who understands the issues. Hubby has been retired for a while due to a parachuting injury in the army, he is nearly 43 and yes reclusive is what we have now both become after his leg went septic from a small scratch from a fall. we have a 12 year old daughter who is now to old for her young age with all she has been through. Brucie does not suffer head aches until there is a new tumour; i think its more from pressure. Doctors could not understand that as he didn't have migranes before he was diagnosed or after. He was taking ibrufen which seem to help but it is also a strong anti inflamator (stoped now after meds were changed). The leg issue has caused more problems than the tumours he is at the moment bed ridden, i attend all his care needs even down to shaving, not to many men let thier wives near there throat with a razor. he was on long term dexamaethasone, this caused the iffection to accelerate causing absess' in right leg and lung (grateful size) so off the dex and home from a month in hospital he is slowly getting stronger; off the dex means he now has no apetite, and gets grumpy when he knows he has to eat. he had done 1 lot 5 days of chemo in May which unfortunately added to the leg issue. but after the absess in the lung was found and treated it has left a huge pocket, so no chemo for the forseeable future. Blood clots in the lung from the infection now put him on hepron shots. All hubby wants to do is be back on his feet and mowing the lawn, one day soon i hope.

[Maya]

Hi Nic, I hope that he can get back on his feet and mow the lawn soon. It's the small things that are so important and keep you going I think. I miss our walks on the beach but Rik struggles with that even though he can go to work. It's because he was so into the ocean for such along time and now there is always that concern that he might have a seizure on the water so he chooses not to go near it. Is Bruce on anti seizure meds? I do wonder how our daughter will be as she gets older and you are so right that they grow older quicker because of what they are going through with their dads. I know she has told me that her dad is living with a timebomb in his head and that's putting it bluntly. Rik has never done chemo as we were told he would only have one chance with it because of the location of the tumour. We just live from MRI to MRI which means travelling to Perth and staying overnight. Living in the present is what we do....

[Nic41]

Hey Maya, yes the small things count, and what was hopes and dreams before this journey started seem now to have changed to getting to the next birthday or christmas, mowing the yard or at the moment Brucie being able to get down to the yard on his own (waiting on a ramp to start being built). some days my daughter seems more grown up than i am and will aproach questions straight out that at times i can find it hard to face. She is still a happy bubbly child most of the time but like the adults involved; she does have days where her fears show through, or a small thing will make her cry, her friends at school find these times hard to deal with and can tease her through not understanding but she is at a small school, and we have some fantastic teachers who keep me informed. Brucie is on clonazepam for siezures after trialing a whole big range this was the one the he found easiest to take, it is one that our Dr gaurenteed he would not have a seizure on unless his levels became to low. He has only had one seizure since the big one that showed the tumour was there and it was a massive one. After travelling 6 hrs in one day back and forth to the big hospital in Brisbane. we now split the trip over a few days so have not had any issues. i do suspect he has mild black out seizures at times but the are so fleeting i am unsure. We were also told no chmoe to begin with and would look at it when the tumour regrew, after the 2nd one was removed in feb this year they sent us off to start, i had major concerns over health issues as Brucie was not well ( from at the time minor issues) and the Dr said no we want to start him now. Brucie had one weeks does of temadol; Bang the minor issues were now major issues, and we have just returned from a months stay in Brisbane hospital, with "NO Chemo" stated by his lung doctor. It will kill you. So the waiting again to see when a new tumour pops up and just take each day as it comes, I'm just happy we have another day.