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GBM grade 4

deja98408's picture
deja98408
Posts: 12
Joined: Apr 2011

I am a 34 year old woman who was diagnosed with GBM 4 in March. Apparently I have the tumor in a few places. They got the big one. I am currently undergoing radiation and chemo. I was fine the first 4 hours after my first radiation appt (2 weeks ago) and then.... I dont know what happened. I didnt remember anybodys name etc etc... I spent 5 days in the hospital. I am okay now. I think my body was wondering what in the heck was going on. The strange thing is my father who is 56, was diagnosed with the same thing October of last year. He flew up here from Hawaii to have his surgery as he needed to be with family who could help take care of him after recovery. He went back to Hawaii after his radiation was over. He stays with his girlfriend who takes excellent care of him. The Dr's claim its not genetic (if not genetic, then what is it, environment)? I have a husband and 3 kids and am scared. I am lucky to have a wonderful husband, family and friends to help me through this. I am worried about my hubby as my illness is taking a toll on him. My mom flew up here from San Diego to help take care of me. She is upset because I wont sit down and relax.... i get bored easily so, I will re arrange the cabinets or excessively clean something.... This is my first post, sorry I am rambling. I just had to put this out there. Only my close friends really know what is going on with me. I know they care but, its hard not to feel all alone.

momsworld's picture
momsworld
Posts: 135
Joined: May 2010

I wish I knew the right words to say, just know that we are all here to listen and be here for you. I do not have cancer but my 13 yr old daughter does. She was diagnosed March 2010 with Anaplastic astrocytoma grade 3 brain tumor. As the road hasn't been easy, 1 year later she is doing really good. My prayers are with you.

deja98408's picture
deja98408
Posts: 12
Joined: Apr 2011

I will include your daughter in my prayers. What is her name? I feel better and better everyday. I just try to keep a positive attitude. I do break down every once in a while. I cry for like 2 minutes then I am ok. I cooked Easter dinner today so we could eat leftovers for Sunday. Leftovers are the best. I am trying to keep my routine as normal as possible (with the exception of working)... so cooking and cleaning is my thing. I just pray that someone can find a cure. Nobody should have to go thru this. Have you taken your daughter to a naturalpathic doctor who specializes in oncology? I am going to see one next month. I asked my Oncologist before making an appt. She actually had one that she has worked with for years. So, my insurance is actually paying for me to see him (hes not even a Group Health doctor)! I was shocked. I just knew i would have to pay out of pocket. I got off with my normal 25.00 co pay. I am so glad my husband has good insurance. I hope you all have a wonderful Easter. Please tell your daughter she is in my prayers.

DistancerunnerXC's picture
DistancerunnerXC
Posts: 44
Joined: Mar 2011

You cannot do that much to the brain without there being some very serious changes.
It is amazing that not more changes in personality occur.
My wife had 2 craniotomies and a biopsy.
She was diagnosed with radiation necrosis and it really changed her.
I consider that I hav been married twice.
To one wonderful woman for 13 years, the BEST 13 years of my entire life.
And for 2 years with this lady who resembles my wife and has been through heck.
We are a team and I work 24/7 to keep her with me cognitively.
If we lose that battle, we lose EVERYTHING.
Just do your best. Just hang in there and try to get re-interested in the things that interested you before and be patient with yourself and thankful for those scared folks who are by your side.

deja98408's picture
deja98408
Posts: 12
Joined: Apr 2011

I am thankful that I have WONDERFUL husband, family and neighbors. Everyone has been so helpful. I am keeping my cooking and cleaning the same (excessive as usual).... I have decided to apply for SSI for work. I really WANT to work... I am waiting to see how things look after I am done with radiation. After we see what my brain looks like, I may return to work... I will include your wife in my prayers. I just hope someone can find a cure for cancer......

elrain's picture
elrain
Posts: 8
Joined: Apr 2011

Hi!

I am 26 and was diagnosed with Medullablastoma in October of 2010. Were you just diagnosed this March? I know what you mean by feeling alone. Eventhough we may be surrounded by friends and family, the feeling seems to be there.I just joined this site, and I have to say that just reading people's stories seems to help that feeling of being alone. I hope that you dont have too much radiation to go through. I think it is the worst thing ever invented! I had to go thru six weeks, and it took everything in me to get it done. What kind of chemo treatment are you getting? I spent a lot of time cleaning also. I dont want to always be the sick wife, so I clean to make me feel like I am doing SOMETHING! Remind your mom that you have to keep your sanity! :) I worry about my husband too, I think people forget that they are going through this just as much as we are (well almost). I try to remind people to give him hugs too and ask him how he is doing. I have had some memory problems as well. My short term memory has really gotten bad. Have you fully recovered from that? You should try to pick up some things that you might enjoy like painting. I bought some canvases and paint and just doodle. It is fun and it isnt cleaning! Chelsea Handler has also written some pretty entertaining books, they are super funny! It feels good to get a good laugh in! If you get an upset stomach from the radiation, try some ginger candies or chews. Sorry this e-mail is all over the place!

Thankfully this is only a season in our life, and will eventually only be a memory!

elrain

deja98408's picture
deja98408
Posts: 12
Joined: Apr 2011

Yes, i was diagnosed in March and had surgery about a week later. I actually feel GOOD. I am in my 3rd week of radiation (3 more weeks to go). I have lost about all of my hair. I think that is the hardest thing for me. I have been fortunate that I have not had too many bad side effects from radiation / temodar. My first radiation appt went fine. I came home went back to work that day and about 3 hours later.... I was talking crazy.My husband had went to the store and my son was waiting for him in the driveway and away i went to the hospital. I was in there for 1 week. I think my brain was like WHAT THE HECK IS GOING ON! I dont remember alot of that first couple of days in the hospital. My husband was at the hospital with me and when he couldnt be, my auntie would come up there. I was never alone. It felt good to have someone there. I was fortunate to have wonderful nurses and doctors and family. Its all so surreal... like i cant beleive this is happening. I am fortunate that I dont have any issues from part of my brain missing. After surgery I was not remembering some peoples names but, that is better now. Other than that, the worst is that i cant really taste anything because of the Temodar.. ugghhh... I love to cook and eat. I have to have others taste my food to make sure it tastes good :( I cant wait until i can eat fresh fruits and veggies. Dr's told me to stay away from fresh because of bacteria etc etc... i love salads and sandwiches with all of the veggies.. Were you told to stay away from fresh veggies while on chemo? I talk to my dad almost every day. He has the same tumor and they are unable to give him treatments at this time because the iv one he was receiving stopped working. He has another MRI scheduled next month so, we will see what that looks like. He is in good spirits. He has vision problems and memory problems as time goes on. Somedays are better than others but nothing big. I am still baffled how me and my father have the same freaking tumor that is supposedly non genetic...... ughhhhhh..... My goal is to clean out my garage. After my appt today I am going to make a goodwill dump then this weekend, dump run. Well, I will lift as much as i can but, my hubby will do most of the grunt work. I will give direction. I am good at that! LOL. My 3 kids are being pretty good thru this whole thing. I have not really sat down and talked to them about this. They kind of know the drill because we took care of my dad when he had his surgery/recovery. My 8 year old always comes downstairs at 8pm and says mom take your pills (dexamethasone,seizure and antibiotic). And at 9:30 pm he will say mom take your Temodar. I will have to get chelseas book. I like her. my message is all over the place too... lol Where can i get ginger candies? Is there a paticular brand? I have just been sucking on those baskin and robbins hard candies...

4theloveofmysis's picture
4theloveofmysis
Posts: 248
Joined: Apr 2011

So sorry that you are going through this.My sister also has GBM. Today was day 23 of radiation. This has been such a nightmare. That first week for her, was kind of off too. She started decadron that week which I think makes people act diffrent.They are tapering her off. I dont like that drug, but it helps with the swelling in the brain.
One thing I see in your letter that I question is the time you take your temador. We were told to take it one hour before radiation. It is suppose to help the radition work better. We were told this by the neuro radiation oncol. The general oncol told us it didnt matter. But Im going with the specialist's though on this.Im a chemo nurse so I am watching everything as close as my sister letting be. I see the mistakes nurses that I work with make...Watch everything they do and question it please. Wishing you a miracle...Maybe you and my sister and your Dad will be writing your story of the surviors of this. Let me know what you do about the temador. Are you doing avastin too?

deja98408's picture
deja98408
Posts: 12
Joined: Apr 2011

I am doing the temodar at night. The oncologist said its easier if i take it at night so if nausea sets in i am asleep. I have not had any nausea though. So, i am lucky there i guess. The only side effect i have is hair loss. I dont like that i have to be done eating 3 hrs before i take the temodar.... i never ate dinner by 6:30pm... i was always a 9pm dinner eater.. I am not on avastin, just temodar. 140 mg while on radiation then i get a break for 30 days (i think) then it doubles in doseage 5 days on 23 or 28 days off. something like that. My biggest thing is they told me i cant eat fresh fruits or veggies. I love salads so, this is killing me! I am going to eat avacado today though. I have to have some on my burrito... Nothing tastes the same while on temodar. It sucks because i am a good cook and cant taste anything i am cooking :( so sad. I am on decadron, keppra an antibiotic (that i am almost done with), omeprazole and my temodar. So, they are tappering me off of the decadron 8mg in the am and 4mg at pm. Well, off i go to make dinner.... I will keep your sister in my prayes.

4theloveofmysis's picture
4theloveofmysis
Posts: 248
Joined: Apr 2011

the general oncol. said the same thing to my sister about taking it at night. but the specialist had something diffrent to say. That is why I say check it out.We were told it intensify's the radiation.(Helps it work better) Nausea some times happens and some time doesnt.There are lots of anti nausea meds out there. My sister hasnt had any nausea. We get a diffrent story with who ever we talk to. Some doctors that we talk to didnt give any hope...Some doctors we wanted to run out of the office. Some just didnt care...We went through a few of them. Settled with the one that has a thing for GMB.We travel about 1 1/2 hours away from home to go there, but I would go to the moon if I thought it was best. I need my sister! This is the worst thing ever...
We were not told anything about staying away from fresh fruit and veg's at this point. I understand the point of that ( Im a chemo nurse) but I only tell patients that of they are neutropenic. But its my understanding that if the vegs go through a veggie wash that its ok. Hope you had a good dinner...

deja98408's picture
deja98408
Posts: 12
Joined: Apr 2011

a veggie wash... so buy that veggie wash stuff and wash my lettuce etc etc.... OMG I would LOVE TO EAT MY SALADS!!!! I make them with baby spinach,iceberg lettuce, artichoke, bacon,black olives, cucumber, egg, cheese,avacado, sometimes chicken bits. I may have to make a salad tomorrow. Hmm... wonder if i should switch up the time i take my temodar. I guess i will ask my oncologist. I am sure she will say something different. My dad went to the UW Seattle for his treatments and they suggested him to take it at night also.... uggghhhhhh.... so confusing. Well, i am going to go make some tea and watch some tv then temodar then bed.... so exciting.. lol. have a great night.

4theloveofmysis's picture
4theloveofmysis
Posts: 248
Joined: Apr 2011

I hope that you were able to have your salad today. Hope things are going well. This is such a rollercoaster ride...I think today my sister blood count has dropped. Waiting for that call. Six more treatment hoping to get through them. Praying they dont have to take any of these meds away. Fighting this war with everything we have...Hope you have a good week end with your family...

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