Husband w/Oligo

Christy · New User Joined: 17 Jun 2008 Posts: 9

Mama 22,......when I have MRIs, I wait a couple days, then talk to onc nurse, and get copies of written report, then I can see if anything is different, while waiting to see oncologist.

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ksplat · Posted: Mon Jun 23, 2008 6:43 pm Post subject: Re: Husband w/Oligo

Dear Chelsea

I pray you've had some joy with getting a copy of Elias' MRI report? I have heard many times of MRI's being compared only with the previous report & not with the initial or any earlier reports. Don't know why this is? I definitely don't know enough about the conidition to guess.

I was saddened to read the MRI showed new tumour growth! I loved the clinical terminology of "reasonable amount of JUNK". lol! I've always asked my Bro what his neuro said about "how much" & size of tumour? There never seems to be a definitive answer to this question, which is frustrating. I can understand your feelings on this too!

Subsequent treatment of Temodal will see Elias suffering fatigue (has he suffered any other side effects with chemo?) & I can understand you feeling trepidation with your OS holiday coming up & the hassles with travel insurance. There are so many challenges associated with this illness! If you have any questions about travel insurance you could post on the Financial Issues thread on this forum.

I'm so sorry you & Elias have to be dealing with this illness. It's such a hardship for you & your family. I'm sending hugs to you all, special hugs to your 2 girls. I have you in my prayers & thoughts always.

Cheers, Angie.
_________________
Brother diagnosed with GBMIV Feb 07
Treatment: Radiotherapy, Temodal, Gliadel Wafers, Dexamethasone, Keppra, Dilantin, Clexane
Went to our Heavenly Father after a 19mth battle,, 47 years young.
23 Sep 2008
http://cancerforums.net/viewtopic.php?p=19227

"Without Faith We Have Nothing"

Mama 2 2 · Posted: Fri Jun 27, 2008 2:02 am Post subject: Re: Husband w/Oligo

Hello,

Christy - that is a good suggestion as it could help you prepare questions better - though for our situation it unfortunately wouldn't work. I recently did request the copies of the MRI's reports, and they gave me all the past ones, but they don't get the transcripts of the report until a week after the scan is done. Also, we have our n-onc visits on the same day as the scan - we live a little way's out of town and so it wouldn't be too convenient for multiple appointments close together. I do like being able to read the reports though, even though our nurse thinks that it's a bit of a dis-service to provide them incase it scares people or confuses them . . . I find it helpful.

I did get confirmation over the phone on Monday from our nurse, that what has grown back is larger than what had been on the Oct scan though. She said we are still talking about a very small amount of cells, and even though it grew back faster in a MUCH shorter amount of time, they are still considering it low grade.

It had been a rough week, but I am slowly coming to terms with the news. Thanks as always Angie for your warm thoughts. This whole thing is really a lesson to live in the moment . . . . each time I start to worry about the future I just need to stop the thoughts, look around me (usually at my girls, and my hubby if he's there), and smile and be happy with what is happening NOW.

~C~
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Mama 2 2 · Posted: Sat Jun 28, 2008 3:07 am Post subject: Re: Husband w/Oligo

Me again . . . I had just a quick question for anyone out there who may know about recurrance of grade 2 glioma's in other areas of the brain.

I finally received the MRI report from my hubby's scan last week, and it said that the t2/flair was seen in the deep white matter of the right occipital lobe, extending inot the parietal region. It also said it was seen 'encasing the trigone extension into the corpus callosum'. Previously, his tumour had always been in the right temporal lobe.

If anyone has any experience/input that would be greatly appreciated.

Fortunately for you all my battery is about to die and I'm too tired to get out of bed for the cord, so that's all I have for now!

Cheers!
~C~
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~Life's too sweet to be bitter~

Our Story: http://www.cancerforums.net/about7982.html
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ksplat · Posted: Mon Jul 14, 2008 5:18 pm Post subject: Re: Husband w/Oligo

Dear Chelsea

I hope & pray Elias' overall condition has improved since we last heard from you? It's been a few weeks now!

So sorry no-one replied to your last query. I really don't know anything? I believe this has just been "accidentally" overlooked by other forum members?

Has Elias shown improvement now he's restarted Temodal? When is your trip OS? Perhaps you are away now? I'm sorry I can't remember.

My prayers & thoughts continue to be with you. Hugs for the girls & you my dear.

Cheers,
Angie.
_________________
Brother diagnosed with GBMIV Feb 07
Treatment: Radiotherapy, Temodal, Gliadel Wafers, Dexamethasone, Keppra, Dilantin, Clexane
Went to our Heavenly Father after a 19mth battle,, 47 years young.
23 Sep 2008
http://cancerforums.net/viewtopic.php?p=19227

"Without Faith We Have Nothing"

brainman · Posted: Tue Jul 15, 2008 7:42 am Post subject: Re: Husband w/Oligo

Hi Chelsea, I really thought I had replied to your question but I must have been mistaken. I am so very sorry about this news. It is extremely rare for a glioma of any kind or grade to have a true metastasis. Most often when it appeared to be two distinct tumors on an MRI, there really is a thread of cancer cells connecting the two locations.

I first had my glioma in 1992 as a grade II. It recurred in 2005 as a grade III. Unfortunately, low grade glioma's do recur but 90% of the time it takes at least 10 years for that to happen when the original tumor was totally removed.

I know that it has been a couple of weeks since you posted your last update to this thread. How is your husband doing now? Give us an update on his condition.

Chelsea, you and your husband are still in my thoughts and prayers.
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Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

Mama 2 2 · Posted: Tue Jul 22, 2008 1:55 am Post subject: Re: Husband w/Oligo

Hi Jim and Angie,

Thanks for checking up - Actually Jim, you were right in that you did respond to my question. . . . though just in a personal message. I had tried to send you pm, but the website gave me a funny message and I wasn't sure if it went through. Then I noticed you were away so I posted to the forum. I thought I sent you back a thank you, but perhaps that didn't go through, so thanks!

Jim, you are probably right about the cells being part of a thread from the original location - something I forgot to ask the n-onc at our visit last week, but will try to remember next time (I really have to get better at writing these things down). Elias is doing fairly well, he has been back on the chemo this week and it seems to have hit him a bit harder than usual in that his stomach has really been bothering him. He hasn't had much appetite and I feel like I can see that he's lost some weight just in the past week. He's always more tired on the drugs too, and it's such a struggle to try to get him to go to bed. Today was the last of the 5 though, so hopefully tomorrow he'll be feeling better, and he has the next two days off as well.

Angie - you are so sweet! We will be going on our trip in 3 weeks, and I am SO looking forward to it. I've spent countless hours on the computer lately trying to get everything booked which is why I've been MIA from here, but it should be a great trip and hopefully the chemo won't upset him too much as he'll be taking it while we're away. Our n-onc surprised us last week by telling us he wanted to schedule an MRI two days before we go - because he's 'curious'. He usually has them every three months, so the next one would have been early Sept. We just wanted to be able to go on our trip in peace and not have to think about things and worry about if there is growth or not and if he would need to change the chemo, etc. Fortunatley though, it looks like it was not possible to schedule one in and we will wait until Sept afterall. I'm usually anxious to find out what's happening, but in this case I am happy to live in ignorance and put it off for a while. I just don't know if we will ever have an opportunity like this trip again and we're really hoping we can just forget about this whole ordeal for at least a few weeks.

Jim, I hope you are well, and Angie I hope Mark is well also - along with everyone else out there and their loved ones.

Cheers!
~C~
_________________
~Life's too sweet to be bitter~

Our Story: http://www.cancerforums.net/about7982.html
www.caringbridge.org/visit/eliasminatsis

ksplat · Posted: Thu Jul 24, 2008 1:11 am Post subject: Re: Husband w/Oligo

Dear Chelsea

So great to hear back from you, you must be real excited about your trip coming up? I will be thinking of you.

Just been to the Gold Coast for the weekend to celebrate with Mark & Kath on the occasion of their 25th wedding anniversary! It was a wonderful party shared with family & friends. We are truly blessed to have shared this wonderful celebration with this re"mark"able couple.

Cheers, Angie.
_________________
Brother diagnosed with GBMIV Feb 07
Treatment: Radiotherapy, Temodal, Gliadel Wafers, Dexamethasone, Keppra, Dilantin, Clexane
Went to our Heavenly Father after a 19mth battle,, 47 years young.
23 Sep 2008
http://cancerforums.net/viewtopic.php?p=19227

"Without Faith We Have Nothing"

ksplat · Posted: Thu Jul 24, 2008 1:41 am Post subject: Re: Husband w/Oligo

Chelsea

I can feel your relief at the MRI not being able to be scheduled before your trip! Our Lord works in mysterious ways!! I agree it would have been a real burden to hear "not so good" news prior to leaving.

Mark gets very tired (exhausted really) whilst on the 5 day Temodal & usually doesn't pick up until 2-3 days after the 5th day. Although, he doesn't suffer any stomach problems & his appetite is good since he's still taking steroids for the pressure in his brain. I'm sure you will have a supply of drugs to help with Elias' stomach worries for your trip. Make sure you discuss with a Dr before you leave.

This trip will be a great opportunity for you all to share some real meaningful & loving family time & some wonderful memories for you to recall in years to come.

Cheers, Angie.
_________________
Brother diagnosed with GBMIV Feb 07
Treatment: Radiotherapy, Temodal, Gliadel Wafers, Dexamethasone, Keppra, Dilantin, Clexane
Went to our Heavenly Father after a 19mth battle,, 47 years young.
23 Sep 2008
http://cancerforums.net/viewtopic.php?p=19227

"Without Faith We Have Nothing"

Mama 2 2 · Posted: Sun Aug 24, 2008 5:10 pm Post subject: Re: Husband w/Oligo

Greetings one and all. Its been a tough 24hrs and exhaustion is kicking in, but I was hoping I may be able to find if anyone has had a similar experience . . . .

You can read our full story in my signature block if you dont already know it, but as an up to speed, my husband has a grade 2 oligoastrocytoma which had previously been cleared up after 6 months of temodar, only to come back within the three months they took him off. For the past 2 1/2 months he has been back on temodar (temozolomide), and has been on 300mg Dilantin for seizures (for the past 11mos).

We have been travelling in Europe with our two little ones for the past two weeks. Its been a lot of work, but a lot of fun too. We have not had a great deal of sleep the past few nights, with travelling, and chatting with my hubbys family, mostly about his condition, shedding a few tears but finally having the chance to talk with his brothers in person about it as they live so far from us. Durring this evening, my husband tells me hes been having what he thinks may be focal seizures for the past few weeks. Periodically he will see a flashing light in front of his eyes for a few minutes at least. Then last night at my BILs wedding (the main reason for the trip), it was very late and we were about to get ready to go when my hubby called me over and let me know he was having a seizure. He was trying to control it as much as possible because he didnt want anyone else to see and therefore worry. At first he saw the flashing light, then started to have a jerking motion with just his head. I took our daughter off his lap and since one of his brothers could see what was going on I asked him to help. For a moment it seemed to stop, but then he went into a full grand mal seizure. I was fortunate enough to manage to get someone to take my daughter away before it started as she saw the last one and that was extremely traumatic for her, but it was hard for his brothers and parents to see. The ambulance was called, but as with last time we opted not to take him for further tests because we felt that there wasnt much new they could tell us. When we got back, however, I called our cancer agency back home to the emergency line wanting to find out if there was anything else they may suggest, such as upping his dilantin doseage. They suggested going and getting a blood test the next day to check to see if his dilantin levels were too low.

Today, we went to do that, but the doctor said that because we were coming in on a non-emergency basis, it would take 4 days for the results, and by then well be on our way to Paris. He also felt the dilantin doseage was rather high as is, and he felt that the seizure was probably because we have been running around and not resting enough. Our concern is that the chemo is not working this time around and that the tumour is growing still. The doctor did say that if he has another seizure then of course we would then come in on an emergency basis and they could then get the blood results right away, and perhaps do a scan - though hes due for one shortly after we get home anyway.

Has anyone here experienced it where the tumour has not changed but they experience seizures due to stress or lack of sleep/rest? Also, the flashing light thing is new, but the last MRI did indicate that the cells were showing in the occipital lobe which I believe has more to do with vision . . . has anyone else experienced this as a symptom? Im worried because this is the first time he has had a seizure while on the medication. He has had three others, but none while still on dilantin. We are supposed to go to Paris on Wed, then home on Sept 1st, but it makes the prospect of the rest of the trip a little scary. At least we will still be with his family for most of the time . . . .

Any info would be greatly appreciated. Im going to call our n-onc tomorrow as well, but its hard becasue this all happened in the wee hours of Sunday morning, and because of the time change I wont be able to reach him unitl late Monday here. Thanks so much for listening, and I really hope you are all faring well.

Cheers!
Chelsea
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~Life's too sweet to be bitter~

Our Story: http://www.cancerforums.net/about7982.html
www.caringbridge.org/visit/eliasminatsis

CAT130G · Regular Joined: 26 Feb 2008 Posts: 14 Location: Texas

Mama 2 2,

Two and half years ago I had a grand mal, they placed me on 300mg dilantin. Six months later I had some mild tingles in my hand and we went to 400mg. This January I started having mini seizures, and started Keppra. Today I take 400mg Dilantin and 3000 mg Keppra, it does appear to be helping. I have gone 11 days with no problems.

I do notice a big difference if my sleep pattern changes. Particualy the lack of sleep.

I will keep you and your husband in my prayers.

CAT130G
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brainman · Posted: Mon Aug 25, 2008 5:06 pm Post subject: Re: Husband w/Oligo

Chelsea, aaaaahhhhhh. You must be in England. In the US, they would have checked the dilantin level ASAP. Anyhow...

In order to control my seizures they had to max out me on Dilantin and add to that Phenobarbital. It was only after adding the Phenobarb that I was truly seizure free.

They should also do another MRI just to make sure that the tumor has not increased in size.

You and your husband are still in my thoughts and prayers.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

Mama 2 2 · Posted: Mon Sep 08, 2008 4:57 pm Post subject: Re: Husband w/Oligo

Thanks Jim and Cat for your responses,

While the trip was great, I must say it's a bit of a relief to be back home now. Jim, you were close - we were in Norway which has a very similar system to the UK. Fortunately the rest of the trip went fine, but he has still been having the focal seizures where he sees the flashing light for a few minutes. It's pretty much happening daily now. I'm sorry to hear to you, but at the same time it's somewhat comforting to know that the small seizures can happen with no change in the tumour. I don't know about grand mal though . . . .

It's been really tough because it's hard to tell what may be from jet lag and what may be from his tumour, but he has been having a really difficult time concentrating/focusing on things lately. He called me from work today and said that he suddenly felt so weak he had to sit down and had one of his students get the other teacher he works with. He didn't get a good sleep last night, so of course we're hoping that's what it is, but it's tough to know. He's so scared he would lose his job if he can't work properly - but I think he should really rest when he needs to. The tough thing is there isn't much time to rest with his work because he's got food to put out by a certain time. He's also been having a few headaches lately, which he has never had, and he was feeling some pressure behind his eye - but only for a short time. I don't know if this is all also because he is so convinced the tumour is growing that he's looking at anything as a sign of that - but he's pretty much convinced he's going to die soon.

He felt better when he found out that I was still feeling 'foggy' from jet lag, had headaches and was feeling tired and not quite right up to the last day or two - but he seems to be getting so angry that he can't focus on simple tasks. I've noticed a few things too - on our trip he could never seem to read his watch properly. I don't wear a watch and was always asking him what time it was, and he would just stare at his watch for a while, then he would tell me a time but it was almost always wrong. He would always ask me the same questions over again, or I would tell him something and he would seem to forget it. I don't know if all that had to do with travelling, fatigue and stress though? He also has angrier at times about things . . . . .

Well, I guess most of these questions will be answered on Wed as he has his next MRI, but we are both pretty much convinced that the Temodar has stopped working at this point and that the results will show growth. We are of course still hopeful that it is just all because of the trip - but we are trying to prepare ourselves for what we don't want to hear.

I've also returned to work from Mat leave today, which is stressfull itself. Thank God my boss was kind enough to let me 'ease' back into my schedule and has offered to let me take off early on Wed for the doc appointment, and take Thursday as an optional day depending on the results. I just wish we could have one day off from having to think about this awful disease.

It feels better to vent to those who really understand - sorry for the lengthy post as usual - but I guess you guys all know me well enough now to know I don't post short!

Cheers!
~C~
_________________
~Life's too sweet to be bitter~

Our Story: http://www.cancerforums.net/about7982.html
www.caringbridge.org/visit/eliasminatsis

Mama 2 2 · Posted: Mon Sep 15, 2008 6:45 pm Post subject: Re: Husband w/Oligo

Ok, so the MRI on Wed last week went pretty much as expected. The tumour has 'ramped up' in agression (to be clinical) and has grown a significant amount in the last three months while on temodar. The good news is that the scan is still not showing a lot of contrast (which surprised the doctors considering how much it grew), so they said it's still not as aggressive as it could be, but it's still not good. It's causing some mid-line shift as well.

So, no more temodar - he is now on CCNU or Lomustine - does anyone have any info/success/etc on this chemo? They also put him on Decadron (a steroid) to try and aleviate the 'flashing lights' which were happening mulitple times a day, but it seems to be helping as it is now only a couple times/day and not for as long. This is just for short term to help with any swelling, and they have also added Clobazam as another anti-seizure drug to take alongside the Dilantin. Does anyone have any knowledge of this kind?

It's been a tough week as my Grandfather also had a heart attack the other day. It's so much to take but I haven't even cried. I think it's because I feel like if I start crying I won't be able to stop. I know I have to keep it together for my girls too, as last time when it came back I was quite a mess. We're having all these conversations now that I never wanted to have to have, and I'm just trying not to think about the future because living in the present is what is helping me cope, but I know certain things really need to be discussed.

It's not that we think he's going to be gone next week, but we know that if this drug doesn't work, and they try him on another that doesn't work right away, that's a really bad sign. We just have to hope to have success with this drug because they also showed the scan to his surgeon and he doesn't think surgery would be a good option at this point because it has spread so far into other areas of his brain and it would potentially cause him too much damage to try to remove it.

Admidst the saddness/hurt/fear I feel, I've managed to stay really happy when I'm with him just because I want our time together to be happy - but he worries about me so much and thinks that because I'm happy around him that I'm hiding how I really feel and that it's fake. My energy is so low these days, we both fall asleep putting the girls to bed each night and then we don't get much of a chance to talk, and we try not to talk much around our 3 1/2yr old because she is smart and picks up on things.

This just really sucks. Thanks for listening, I hope you are all well.

~C~
_________________
~Life's too sweet to be bitter~

Our Story: http://www.cancerforums.net/about7982.html
www.caringbridge.org/visit/eliasminatsis

ksplat · Posted: Tue Sep 16, 2008 6:46 pm Post subject: Husband w/Oligo

Dear Chelsea
I'm sorry to hear about Elias" MRI result, I do hope the new growth can be contained with CCNU. I don't have any experience with this chemo.
I guess with the additional anti-seizure meds they are trying to control the "flashes" Elias is experiencing. Steroids also always help the overall condition.
If the tumour can be reduced in size will they then consider debulking? It's a little concerning to hear about "mid-line shift".
Sorry to hear about your Grandfather - how is he doing? So much upheaval for you & Elias & your girls. I will keep you close to my heart & hold you up in my prayers.
One day at a time! It's the only way.
Thinking of you my Dear.
Cheers, Angie.
_________________
Brother diagnosed with GBMIV Feb 07
Treatment: Radiotherapy, Temodal, Gliadel Wafers, Dexamethasone, Keppra, Dilantin, Clexane
Went to our Heavenly Father after a 19mth battle,, 47 years young.
23 Sep 2008
http://cancerforums.net/viewtopic.php?p=19227

"Without Faith We Have Nothing"

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