Brain Tumour Survivor

Hello all!, My husband was diagnosed with an Oligodengroglioma Grade II back in September 2007. We are coming up on our 5 year anniversary date since diagnosis this year! woo hoo! I have read through alot of posting and was wondering if anyone else out there has any new news for the Oligo II? I know that age, size, location and genetics play a huge roll in prognosis for this type of tumor. So I'll give some specific's to my husband's scenerio. He was 45 years old at time of diagnosis. He had no prior symptoms until one morning at work he had a motor seizure, (eyes twitching and head twitching to the left uncontrollably - husband was conscious the whole time and speaking - was able to ask to be taken to ER). CTscan revieled the culprit. Brain Tumor located in the right frontal lobe up next to the mid-line and butted up against the paratiel lobe. In October 2007 he had a biopsy taken of the tumor. Revealed an Oligo II. My husband elected to have surgery to remove (debulk) as much as possible due to the fact he was still having seizures, but minimize any neuro deficits by only taking as much as needed. His tumor was approximately 4cm in diameter - egg shaped. ( i fainted in the ER room on that first visit when the horrible bedside ER dr. had me come look at the CTscan and as it started to reveal itself all i remember was feeling very warm and then waking up to the nurses and being upset that my husband was in the ER area all alone and i wasn't in there for him...) anyways. They removed about 50% of the tumor in November 2007. DNA testing came back from the October biopsy finally and he DOES have the 1p19q deletion. He was put on Temodar for 12 months after recovering from a successful surgery. Temodar did stabalize the tumor growth and it has gone unchanged since June of 2006 at approximate size of 3cm in diameter. There is still a small enhancement that is reported as treated tumor cells. We have been watching that area for reocurrence and so far it has remained the same. His routine MRI's are also done with Spectroscopy scans as well. This year the doctor told us that he could go to 12 months between MRI's...this worries me because i feel like he's getting CLOSER to a reocurrence ... than further...He turns 50 years old this year...and i'd think they would need to have MRI's closer together.
Does anyone out there have any other information or take on that?
Oh...my husband did NOT do any radiation and has been saving it for the back pocket in case of recurrence at a higher grade.
Sincerely to all the survivors out there... My husband is working full-time and loving life... We stay on the positive and know there's a reason for everything...but also that we need to be proactive and knowledgeable about his condition.
Nlesie

I just re-read my posting and I don't know why but i typed down the year of diagnosis as 2007... it was 2005! 2007 was a mile-stone for us because we moved back to our home town area closer to family.... it was september 25, 2005 when my husband had his first seizure and was diagnosed with the Oligo II.

Your husband and I share some similarities, except mine is a mixed glioma and I was diagnosed in 2007 :-).

We have insurance, which may help, and a neurosurgeon who feels bad that the operation left me disabled - plus my wife won't take no for an answer. So we are able to play the sympathy card and insist that scans are frequent. We have just moved from 3 to 4 monthly. Next year I am planning to move to 6 monthly - I'm bored with scans and visits etc. I personally am comfortable with twice a year.

Its great he's working and positive. The best thing he can do are lifestyle changes that benefit any chronic illness, if you haven't made some already. It works better if you do it as a family and we have no sugar and other white carbs in the house. I am a big fan of vitamin D3 and take 2000IU per day. The best book I have read is Anticancer by Dr David Servan-Schreiber. From the chart at the back of the book, you can see that garlic, leeks and brussel sprouts are among the best foods for our type of cancer. Add 30mins of exercise and lose any extra pounds and you have the potential for a great anticancer lifestyle to prevent recurrence. I eat plenty of omega 3 and add tumeric/black pepper to nearly all meals.

Keep up the good work! Thanks for sharing your story. Sometimes its easier being the patient..

Thanks Kenobewan! I've read several of your postings on other sites and your research is right on with what i have found. I did mega immediate research when my husband was first diagnosed and the doctors at first did say...'wait and see' but also said that not all patients choose that. So we did our own research and i've allowed my husband to make his final decision on how he wanted to be treated. He wanted to hit it full force surgery wise without being to invasive to keep his quality of life as good as possible. WE found out about the radiation on our own about waiting and saving it for the back pocket...etc. Temodar was hard to achieve we fought the insurance companies on that one and won...! As you know the FDA back in 2005 had not approved it for Grade II glioma's - yet they had scientific studies that showed that patients with the 1p19q deletion were good candidates for Temodar to be successful. Waiting to get a higher grade level was not acceptable to us and we managed to overturn the insurances decision and they covered it for 12 months...thanks to MD Anderson's letters and the Neurologist specialists in Oklahoma City, OK. Which is where we were living at the time of diagnosis. We currently are in Lee's Summit, MO a suburb of Kansas City, MO. It's closer to family. After being the sole caregiver without someone to give me a break during that year of surgeries and chemotherapy and appointments... As soon as we had the window we moved back to KC. Which is where my husband was born and raised. My family is all across Missour from St. Louis to Kansas City... so we have a better support system now. We have a wonderful energetic 8 year old 'Joel' whom is very active in sports. He was 4 years old when the BT was found. He is a big reason I know that keeps my husband going and staying positive.
On the note about eating healthy and exercising...this is an area that as a caregiver I struggle with...because I'm all on board ... but my husband is NOT.... He wants his chocolate EVERYDAY...and lots of it.. in the first few months of his diagnosis he was trying to eat more vegtables and fruit and cut out the processed sugars and sodium and fat content etc.. but it didn't last long. He does have a job right now that requires him to be walking lots...(installs low-voltage fire alarm systems). He works along with his younger brother whom was able to get him a job there. My husband used to be in Operations Management...he just couldn't handle the multi-tasking that is soooo overwhelming in that field anymore.... He needs someone to overseee...go do this okay now go do this..and keep it simple...... He talks about project management from time to time but so far the company hasn't promoted him...(i'm sure they watch him closely) It's the short term memory issues from time to time. It will be 2 years this August that he's been working there. It has definitely helped my husbands attitude knowing he can still be a contribution to the family and he has insurance. I am fortunate enough to work as an electrical designer for an engineering firm and have been able to keep up with insurance and make sure he has no laps in coverage. The Lord has blessed us greatly! We sold the small acreage we had in Oklahoma, the horses, the farm equipment and downsized to pay off all medical bills we did have (which as you know were pretty large even with insurance). Thankfully this was in 2006-2007 before the housing bust here in the US... I know someone up above was looking out for us... My husband continues to take Keppra for his seizure control. He was on Dilantin in the first few months but that stuff was so damaging to his system and we got him switched quickly...after more research...he calls it his Vitamin K ! He's missed a dose a few times and he can feel the aura coming on that he's going to have a seizure and can relax through them so he says...and take his med's.. so he's never questioned about getting off the meds....he feels he'd have a seizure if he did for an extended time....
Something that my counselor told me the other day really stuck...my husband and I sortof changed rolls over the past few years in that he's the dreamer in the family now and i'm the realist. So sometimes when he's making comments like...I'd love to live in San Diego! I used to knock them down like...Don't have a job there, what about insurance, it costs to much,,,it's too far from family etc... and right then and there I've managed to CRUSH the dream of his. Now I know to ask...when he makes comments like that...'Honey is that a dream or something you would like to look into right now?' usually he says,'' Oh it's a dream maybe someday '..... and then i get to breath, exhale and he gets to keep on dreaming.....
I think that's important for all the caretakers out there....I know we want to be realistic...but watch out and be careful not to crush the dream of the one your caring for...! guess that's the biggest thing i've had to learn the hard way the past few years....not being the actual patient...

Hi NLeslie
My husband was diagnosed with the same tumour in 2000, unfortunately late last year it was upgraded to a GBM 4.

We tried to change our diet to eliminate all processed foods and meat, we also introduced juicing vegetables etc 5 times a day. John was okay to start with, but after a while he became so unhappy with the lack of meat and like your husband he loves chocolate and sweet things. His attitute was affecting the family and the diet change stressed him, so I reluctantly re-introduced these items but have reduced the quantity.

Like you, John and I reversed roles. I became to main income earner. He started to bring life style balance into his life. We live close to the beach in Perth, Australia; he joined the local surf life saving club gym and would work out three times a week and then go to the beach.

As a family (we have 2 kids, now 10 and 11 years old), in the last 5 years we started to have overseas holidays, mainly to Bali, as it's inexpensive to travel to Bali from Perth. We also travelled to China. Having family holidays was the best thing for all of us. The trigger for this change was because the tumour started to regrow, but luckily Temodar stopped the progression. Prior this this, we thought that we could not afford holidays and concentrated on paying the mortgage quickly.

In the last year, his tumour was upgraded to a GBM 4. We can't have anymore chemo or radiation. His platelet levels were not recovering and he was having bleeds within the tumour. Not good news.

What I'm trying to say, enjoy life as a family. Go on holidays, let him eat what he wants, cause if he's like my husband, the stress is not worth it.
My husband is permanently bed bound now so his quality of life is not great, but we are very greatful that we have enjoyed life to the fullest while he was able.




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Thanks Deanne for your words of advice on family vacations. I am so sorry to hear about your husbands current state. I know that the statistic's say that my husbands type of tumor most likely would reoccur between 5-10 years approximately..of course no one knows for sure. but your doctor in OKC told us that if he had to give an opinion (my husband kept pressuring him for timelines) that given my husbands age, size, grade and location of tumor that he would be cautious at the 50 year old mark which is this year and is also 5 years after diagnosis. He stated that our normal body cells age they don't get younger and around 50 is when they start to evolve into something else. But when asked over and over by my husband how long do i have. He kept telling him 8-10 years more or less it all depends and what technology/research occures between now and then...
On the chocolate/caffiene part ..its not necessarily the sweets that my husabnd wants...it's CHOCOLATE ! He'll pass up any type of sweet if it doesn't have chocolate on it. But he HAS to have chocolate every day or like you said..the stress is not worth it.. We had major issues of manic behaviors when he was denied chocolate and/or I forgot to buy something anything with chocolate at hte store...i mean how could I? So I try not to get upset and/or depressed about his desire for chocolates. it's what he wants when he wants it and that makes for peace in the household....(he usually has to take a nap after 5 chocolate cake donuts anyways...) and yes i'm not exagerating... 5 cake chocolate donuts, and a slice of chocolate pie ... all in one day...and that's with cocoa puffs cereal in the morning and in the evening before bedtime. I've mentioned it to the doctor in the past and was (evil eyed by husband) and teh doctor just reiterated to him that he'd advise him to eat as healthy as he can.
So we can't make him do something he doesn't want to do... peace is better. The hobby my husband still loves to do is fishing... we live by a 300+ acre lake and he is currently doing lots of crappie fishing .. so far they haven't hit the banks yet...but last night my son caught 3 and my husband caught 2 all little one's and they released them... several blue gill were caught as well and a small bass... I enjoy watching them have fun. I love to fish too but last night i walked the dogs around the lake as they fished... I try to let them have as much father/son time as they can... sometimes it doesn't go so good between the two of them... They are my two children only one's pushing 50 and one pushing 9 !
We did start an anual family vacation the past two years on my sons springbreak during school. Last year we went to San Diego, CA and this year we went to Tampa Bay, Florida. We use a Southwest credit card as a debit card and pay it off each month and accrue free flights. We usually accrue two a year...so we're able to cut the expenses down that way. We have started focusing on family time and the kids. We have Joel (8) togehter and I have two step-daughters from my husbands previous marriage...they are 22 and 18. One is graduating college this year and one is graduating high school this May. They live about 45 minutes away...we see them as much as we can... especially Joel loves seeing his sisters....
Thanks for sharing about your situation. I will pray for your husband and continual prayer for a cure of this icky time bomb in so many people. There needs to be a cure.....soon....

Hello all! My husband Doug (Oligo Grade 2) has his routine MRI checkup coming up next Wednesday 10/06/2010 ! We are believing and expecting a stable report! Doug has been jogging this summer with me and also for the first time in his life...jogged a 5K without stopping! It was for the 'Head for the Cure' fundraising event for brain cancer research! Over 4,500 participants ran and the day brought in over $300,000 dollars to go specifically towards Brain Cancer research. Another 5K was ran a few weeks later that was specifically raising funds for pediatric brain cancer research! I haven't heard how much was raised at that event yet... Keep up the strong positive fight to all you warriors out there.... I'll let you all know how the MRI is in a week or so when the results come in. Sincerely know that everyone and every caregiver on this forum is in my thoughts and prayers!.... as we all dream of a cure for this ugly disease....we will get there step by step....Nancy

We met with the Oncologist today to go over the MRI report. There is new activity at the area of the tumor site that has been showing enhancement since June of 2006. There's small growth. We are having another set of eyes look at the MRI to compare the last several MRI's as a second opinion. My husband and the doctor both were very non-challant about it like...well it's slow growing being and Oligo and you have the 1p19q deletion so lets just wait and watch it and schedule an MRI in another 6 Months!!! HELLOO>>>>> okay i'm not the patient i'm the wife and caretaker and this bugs me. I would think with the signs of activity that they would want to do maybe another few rounds of Temodar and see if that stunts it again and/or shrinks it... it shrunk it a little back when he took it the first time. Does anyone have any take on this patients and/or caretakers? Doug has never received any radiation to the tumor site only debulking surgery which left 50% of the tumor bed in his motor track. (Right frontal lobe next to paratial lobe up against the meneges) It has been 3.25cm diameter since June of 2006. Now it's showing signs of activity and has regrown some but not alot so the doctor says. We are waiting for the second opinion to come in but it's bugging me the oncologists okay attitude with it all. I guess on the surface i've been the more vocal one and my husband has been quieter. He's been feeling so good lately and has started exercising and has lost 10lbs...the doctor commended him on losing the weight... and now this... I think Doug's a little in denial that it's really growing again as if the first report has just been reviewed wrong and if the doctor is like no big deal.. he is too. maybe i'm the one over-reacting...as my husband says... could be... I just want to attack it before it gets bigger... I don't agree with the waiting... just doesn't sit well with me...

Hi Nancy,

I sympathize - this is a difficult situation. You want to be proactive while the oncologist favours a wait and see approach. One position is going to be proven right.

My case was easy. Further treatment risks outweighed the potential benefits. I haven't had regrowth yet but they were keen to be proactive.

I am about to have my six monthly MRI. I have heard about the proton therapy centre opening, hopefully, in 2013 in Sydney. At the MRI review I am going to ask how one gets a referral. I have also been planning to ask whether there is any way to use heat noninvasively to kill my cancer cells. If there is, the plan would be to use heat first and then proton therapy later.

What I am suggesting is that there may be alternatives. I am assuming that he using all the chronic treatments available and his weight loss could help. You may not be able to change their minds but still have a plan B. I hope these comments are helpful :).

Thanks Ken...I will check into the Proton Therapy. I know that down in Oklahoma City they have opened up a facility there that has that capability. When we receive the 2nd opinion back (hopefully today) I will mention it to my husband and see what he thinks. Needless to say he wasn't in a very good mood yesterday, he was very irritable and tired. He doesn't share much about how he's feeling but that's his personality. So it's hard to tell on the outside really how he's coping. Being female and the wife .. i tend to lay it all out on the sleeve.... i think i'd explode if i didn't have an outlet...such as this forum, my counselor at church and my dearest friends. I do know that Doug spoke with his best friend last night for about an hour on the phone so I'm sure that helped at least he was talking with someone. whether he told him about his doctor report or not i do not know there was alot of talk about fall fishing... :)
Thanks for your advice Ken and I'll keep the plan B in the works.... but ultimately it's what Doug wants to do and how he wants to proceed and i have to respect that - but I will keep giving him as much information as i can so that he can decide... Sincerely, NancyL

Hello Nancy,

I've just caught up with your posts and sympathise with the situation you find yourself in regarding the nutritional side of the treatment approach. You've probably read our story about GBM4 and how strong I am about the food we eat determining how we can help ourselves as the treatment goes on.
My wife, Denise, eats chocolate but only occasionally and only 70% dark as recommended. Maybe more at that level could help satisfy the desire.
I just wanted to post to give you support as the caregiver. I was lucky as the best things to eat Denise agreed with so it made it easier. I am the one who has had to cut back on the 'poorer' foods as we eat basically the same diet! I know it is doing me good as I feel (at 64) as good as I ever have. Oh I wish for you that your husband would reach across the food divide for you as this side may well provide the cure you are after. I really believe that while treatment may handle the symptom, only your own actions can address the cause. Denise is just so well now, I wish the same would happen for you.

Dave.

Second opinion came back with the same approach as the doctor previously... wait and see - another MRI in 6-12 months...
the MRI report read... enhancement of high T2 flair adjacent to the resection cavity..faint T2 flair hyperintensities also seen in the periventricular regions around the anterior and posterior horn lateral ventricles. T1 hyperintensity is also seen along the inferior margin of resection cavity.

The spectroscopy showed mildly increased Choline and Myoinositol peaks. NAA peaks are not reduced from previous scan.

There's always been an area that they've been watching for the past few years of T2 flair. the flairs seem to be increasing in the tumor site area. but the doctor said there is no increased size of the tumor when compared to previous scans.
nothing to do at this time but wait and see...

So my husband is going to keep up with the exercise and try to watch what he eats. He went one day without chocolate last week and that was a huge undertaking for him... hopefully he can wean himself from certain junk foods...at least become more aware of what he's eating and understand the benefits he will reap from taking on a nutricious diet.

until next MRI.... keep thinking positive and control only the things we can and that is our daily health of eating right and exercise and enjoy each others company...with laughter and love...don't take anything or anyone for granted.... Sincerely, Nancy

My husband went in for his MRI checkup this morning 7am... we'll know more in a day or two how the scan looks. He has been feeling the same as he has the past few months, however he's had alot of forgettfullness the past few weeks. He says it's due to being tired or that i'm overreacting to everything (females..lol) However, i did have to remind him last night of his MRI appointment for this morning twice. This is usually something you don't forget. So I'm still praying and Hopeful for no change from previous MRI scans... I'll keep everyone posted.

My husbands MRI and Spectroscopy came back with no physical change to the Tumor when compared to previous MRI's. However, we do have some new jargon in the report. He now has Additional scattered T2/Flair hyperintensity seen within the periventricular and subcortical deep white matter suggestive of chronic small vessel ischemic disease. This is the first time that it has shown up. Diabete's runs in Doug's mothers' side of the family and they said it could be an onset of that. They did do bloodwork and his HDL counts are low at 28 and his LDL counts are 100 ... They have scheduled him to have a 2 hour cognitive study/evaluation testing on July 22nd. Has anyone out there had this type of small vessel hyperintensity show up on their MRI? This might not even be related to his Tumor.... but genetic to his family history... Doug has been having short term memory loss that i've noticed has become more frequent (happening a few times a week instead of a few times out of the month) He also has started medicating himself for his seziures - he currently takes Keppra - and he's supposed to take it 750mg in the AM and 750mg in the PM... He has however decided he only needs it in the morning... he's been doing this for almost a year now and his neurologist pretty much kicked him out of his office because he either takes it as he prescribes or not at all. Well my husband decided that since he's running out of the prescription that he'd have his oncologist refill his prescription... Well the Oncologist said the same thing... and refered him back to the neurologist... Doug's reasoning for stopping the pill in the evening is because he just doesn't want to take that many pills... that would keep him from taking 320 pills a year.. ( i reminded him that that would mean 365 pills hence there is 365 days in a year ) ... then later that same evening he was trying to explain to his mother why only took the one in the morning and said that keeps him from taking 351 pills a year... and i reminded him again that there's 365 days in a year... these are the things we've been having issues with... his reasoning, memory and mood swings... woooaaahhhhh have they been a rollercoaster lately... he has become very defensive if you correct him or he forgets something he said and you repeat it and he claims he's never said it... he hasn't been exercising any lately either and gained all his weight back he lost last summer... even though I admit it was along winter... but he's been having lower back pain, left hip pain and left leg to the knee pain...He now walks with alittle hitch to his step with the left leg... (his tumor is on the right frontal lobe side in the motor track) however, he's been going to a chiropractor and a massage therapist for that too...and he says it makes it feel better... he's had MRI's and ultra-sounds of the back and legs...nothing is shown to be hindering the nerves no disc problems etc.. they haven't done an x-ray of the hip joint though... he's done steroid packs and now just takes Aleve as needed. He turned 51 this month..and is going on 6 years since diagnosis when September 25th arrives... The past year has been difficult on the home front for our son 9 going on 10 in July.... he doesn't trust his dad to remember things and he thinks his dad is mean (mood swings are pretty bad) and his dad doesn't have the energy level to do alot of interaction with him...so he thinks he's boring... just wants to watch tv and go fishing or he's at work... his dad also takes naps alot during the evening after work while in front of the tv after eating because he's usually very wornout... i'm thankful very thanful that he's still able to work. But it does weigh on him mentally, physically and emotionally. stress doesn't go well with him.... Well sorry i have typed quite a novel... I hadn't typed in awhile... but it was his MRI update and just wanted to post and feel connected. There are days when my husband is bright and cheery and his normal funny self ... those are the days I live for ... they've just been getting fewer and farther between.....

My husband had his MRI checkup in June and the tumor is positively growing again. My husband has had a second opinion and an additionalfunctional MRI performed. He has tried to get into a clinical trial that he was a candidate for but it is already filled for the recurrent tumor patients. He has decided to have surgery to remove the tumor and see what types of new cells are in the new growth. After the pathology reports comes back we'll revisit the options that we have at that time. Surgery is August 13th ... Our doctor told us to go on vacation and enjoy our time together come back ready to battle the latest recurrence of the ugly tumor. Doug Loves San Diego, CA so that is where we are going for a week. Please pray for the surgery to go smoothly and they are able to get as much of the tumor removed as possible and that the new cell growth is still Grade II and slow growing. It will be 8 years since diagnosis on September 28th. Will post an update after we get back from vacation and surgery is completed.... Thoughts going out to all the survivors and warriors out there!
Sincerely, Nancy wife of Doug (Oligo, Grade II Right Frontal Lobe, golf ball size)