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oligodendrogliom

LuvmyJeff
Posts: 8
Joined: Feb 2012

I see alot of people on this site who have dealt with this type of cancer. My husband was diagnosed in May 2008. Grade 3, inoperable as it is in the center of his brain. We went through hell after 6 weeks of daily chemo and radiation. The decadron they had him on (very high doses for too long!) almost killed him from a syndrome called Cushings. So far, he is doing well, back to work and almost back to normal. He goes for his routine 6 month MRI next week. I suspect the tumor is coming back, due to the strange things he's been going through lately. I am VERY scared for the results! Our oldest daughter graduates in May from high school and our youngest is 15. I'm not sure what will happen if the cancer is back. He can't go back on decadron due to the bad reactions he had last time. Would really appreciate some feedback from anyone who is/has gone through this. I have no one who understands my fears. All they ever say is "Don't worry!" Hard to do when you don't know! Much easier said than done, especially when they haven't been through this! Anyone?????

Raani01
Posts: 68
Joined: Mar 2011

Hi,
As my husband has been dealing with Oligodendroglioma (he was diagnosed in 1997 with grade 1), now we are faced with not much treatment options ( you may look in to my previous posts).The interesting thing is that his grade changed to 3 in 2008. I wonder all the problems he has now is due to the radiation 1998 and the chemo after that?! (One may see a good thing to get diagnosed later stage to start radiation!).We were told oligodendroglioma was the best one if you ever get a brain tumor as it is known to grow slowly. You should find comfort in it as your husband is doing well now and you can hope that the treatments will keep the tumor at bay for a long time. My husband has been doing well, working until the tumor started to resist the chemo treatments in the last year. Decatron does different things to different people also. Please learn from your doctor and from this site and other resources about doses and the importance of knowing how to tapering off of it.

Anyway, from my experiences, I would recommend to try to live normal as a family, appreciate and enjoy your husband's goodness (ignore the bad ones!), intentionally try to do things to bring the family closer; do things that display caring and love between mom, dad, and the kids. This feeling of "we all care and love each other" will help tremendously in difficult times (as it is a good thing in good times also:-).

Meantime, start a journal writing down events, ask questions to dr about all the different options, get a second opinion, and contact your dr when you become concern with behaviors (You can request MRIs also)etc.etc.
So, I still believe knowledge is power, so we will have the comfort in knowing we have done everything humanly possible, but sometimes it overwhelms you and worries you much you wonder ignorance is better.(My husband never tried to find much about brain tumor or worried, he trusted his doctor and followed the treatments. He never liked to talk about his tumor and acted like everything is in control).

Hope my experience helps you in some way of your thinking process. The mystery of brain tumor is that each person reacts to the treatment so differently, you can not predict anything.Good things can also happen; having brain tumor in the family, we will suddenly learn to appreciate little things and we overlooked before:-)

Take Care
Raani

LuvmyJeff
Posts: 8
Joined: Feb 2012

Thank you!! It is soooo nice to know there are people out there that a going through what we've gone through. I'm happy to say his MRI came back good, no change at all! So now we wait again for 6 months for the next one and just carry on with life. However, we have decided to not worry anymore until the time comes that we have to deal with this again. Knowing we will eventually, we are just going to let it go for now and plan our daughters graduation, moving (hopefully!) to Vancouver Island this summer and helping our youngest daughter to finish high school. And like you said "Appreciate the little things"!

BRADTB3030
Posts: 1
Joined: Apr 2012

Hello , this is my first time making contact with anyone with the same issues that I have. I just want to let you now that I have had this same issues since 2004.I had a tumor removed in 04 and had chemo treatment after. I just had a return tumor removed in january of this year. I was out of work for 2.5 weeks. Everyone was amazed that I was back that fast. I am currently going through chemo and all seems to be going good. back in 04 when I had the first tumor I was looking up the survival time on the interenet and the best I could find was aproximately 3 years at the best. I am over 8 years now and things are going well. I just dont want anyone to go by what they read on the internet. Just keep in mind you can kick its butt. Take care.

LuvmyJeff
Posts: 8
Joined: Feb 2012

Thank you for your comment! It is very encouraging to hear of others who are kicking butt! At the moment my husband is doing ok, MRI's are excellent. He's having some issues with his back and hips but we should find out some results of scans and xrays this week. He has always said the brain cancer won't get him so I have to believe he is right :)
Keep in touch, its nice to hear the stories of others!

LuvmyJeff
Posts: 8
Joined: Feb 2012

Sorry it has been so long since I've updated this.  I read all the posts and am sorry to hear of all the losses others have endured.  It saddens me deeply.

My husband has just had to have a total hip replacement in Feb. 2013 as the steriods caused necrosis of the head of his femur.  That was his right side and the left will also need to be replaced in time.  They found more necrosis on his ribs and breastbone but I don't think they can do anything for that :( 

I've been noticing alot of differences in him in the last few months.  I am worried there is some new growth or is it damage from the radiation?  He goes for his 6month MRI on March 4 and then back to the cancer clinic on the 7th.  I worry too much I know but I think when you have cancer in your life you can't help but worry. 

As it stands, he was diagnosed in May 2008 and they gave him 1-2 years to live and he's coming up to his 5 year mark!!! 

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