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Kristalee
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Joined: 06 Nov 2008
Posts: 43
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 Posted: Tue Dec 16, 2008 7:52 pm Post subject: Enhancing tumor vs Non Enhancing? |
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Well,
After speaking to Marks actually surgeon, he said he was able to remove all "enhancing tumor" which was 60%. What is left is not enhancing and they say its grade 2 oglio......what does that mean, is this good or bad......I'm not sure what to feel. I know its better to get ALL of the tumor out. What does this mean for Mark long term? I'm feeling a little scared
Krista |
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brainman
Site Admin
Joined: 13 Oct 2005
Posts: 5617
Location: Tennessee
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Kristalee
Regular
Joined: 06 Nov 2008
Posts: 43
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| Posted: Tue Feb 03, 2009 2:44 pm Post subject: Update on my husband |
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Hi all, I havent posted in awhile, since we have been waiting for Marks rad and chemo to end, along with his new MRI scan.
I wasnt able to go the appt since I have to work, but It was today, only a month after treatment, Dr. Norden says his tumor looked irritated and is mostly likely enhacing because of the after effects of treatment, he then said he says the tumor will not enhance the next time a MRI is taken,
I was hoping for better news, Dr Norden didnt go in to details of the size of the tumor which was left, which seemed odd to me, but I am not a doctor....  .
All I can say is, Mark has already given up on life and our marriage, I have lost my best friend and husband already, he is not willing to fight for what we had or regain anything of his previous self. He has gone on SSI and is convinced he can never work again. Never speaks of a future, only that he is dying. I am barely holding our lives together since I am the only one working.......I wished Dr.Norden would give him some hope! He advised Mark to seek help with his depression. Mark has also become very angry, and someone I dont like even being around anymore. I feel so MUCH pressure to stick it out, even though the core of me rebels at the thought of what my life with Mark is turning out to be, we are both so very unhappy. I can only support and give so much, while getting nothing in return, he has told me he is only happy while playing an online game.....which he plays for hours a day, while doing nothing productive with his life.
My family is saying it will get better, my Mom thinks I should leave for awhile.....how has it come to this so fast.
Krista |
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cmcd
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Joined: 20 Jun 2008
Posts: 29
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| Posted: Tue Feb 03, 2009 3:55 pm Post subject: Re: My hubby has what they call a "mixed" brain tumor |
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Krista, I hate this for you as much as for your Hubby. He needs to talk to Jim; or at least read Jim's story. I wish he would not give up HOPE so soon. He is at stage II and there are so many opportunities out there. My BIL has GBM IV for 24 months now. Yes, he is declining but his was too far advance on the start of this journey. His HOPE carried him through these 24 months. You, your hubby, and family will be in my prayers.
Charlene
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http://cancerforums.net/viewtopic.php?p=37399 |
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brainman
Site Admin
Joined: 13 Oct 2005
Posts: 5617
Location: Tennessee
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| Posted: Tue Feb 03, 2009 9:25 pm Post subject: Re: My hubby has what they call a "mixed" brain tumor |
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Dear Krista {{{Hugs}}},
I am so sorry that your husband seems to be giving up. I know what he is going through. I remember that when I first got the news, I could not think about the future either. However, eventually I realized that I could life as if I was dying or life as if I was still alive. I am sorry your husband is not at that point yet. Just keep loving him and encouraging him until he can support himself.
You and your husband are in my thoughts and prayers.
_________________
Jim
Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
http://cancerforums.net/viewtopic.php?t=2405
My Story Part 1: http://cancerforums.net/viewtopic.php?t=2528
My Story Part 2: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 3: http://cancerforums.net/viewtopic.php?t=8029
Twitter: @JimHawkins54 |
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Mama 2 2
Senior User
Joined: 29 Nov 2007
Posts: 107
Location: Sunshine Coast, BC
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| Posted: Sat Feb 07, 2009 12:53 am Post subject: Re: My hubby has what they call a "mixed" brain tumor |
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Hi Krista,
I'm so sorry to hear how things are going for you and Mark right now. I remember Elias had struggled more with his intial diagnosis then the does now. There have been many ups and downs over the years, but some of the earlier days were the hardest. We shed a lot of tears together.
It may be a good idea to see if he would be willing to get help for depression, others on the site seem to think that has helped - you could even look into some natural or herbal supplements for the same, like St. John's Wort. It's also a possibility that the area the tumour is affects his mood and anger - have you asked his doctor about this? It may not make it easier to handle, but perhaps easier to accept or understand if that has something to do with it. As much as Elias stays positive, there have been more days lately where he seems angrier than usual. He is suffering quite badly with itching from some of the treatments he takes, and the stress of the finances and travel for treatment can be hard to bear, but sometimes I worry that it's also a sign of tumour growth. I've been feeling a bit more 'sad' then usual the past couple of days too - but I also just read about the loss of a little boy to a GBM and even though I didn't know him at all, it really affected me.
In time I hope that Mark sees that it is better to live, than living to die. I know it's hard on you - I'm sure Mark isn't trying to take it out on you, but that just seems to be how it ends up . . . you are the closest person to him and therefore you see and hear it all and you are the easiest person for it all to come down on. I admire you for sticking through it so far. It's not an easy position to be in.
Is Mark open to talking with any other bt patients? Is there a support group in your area? Maybe if he can talk with others who have been living well despite their diagnosis he may be able to see that his life isn't over. It's clear how much you love him - just because you don't like his anger and feel the need for a break doesn't change that - and hopefully if you just keep reminding him of that he'll come around in time. I wish I had something more helpful to offer . . . . I'm thinking of you both.
~C~
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Our Story: http://www.cancerforums.net/about7982.html
www.caringbridge.org/visit/eliasminatsis |
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Kristalee
Regular
Joined: 06 Nov 2008
Posts: 43
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| Posted: Wed Mar 11, 2009 6:14 pm Post subject: Some advice needed |
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Hi all, Since my last depressing post, both Mark and I are feeling alot better.
We had a visit with the assistant of Dr.Nordens, who I loved! She was giving Mark HOPE! which dr. Norden is incapable of giving or just deciding not to.
She went over the path report with us once more saying that having a tumor made up from oligo 2 is great. He is also able to join some clinical trails, but Mark is very stubborn about not wanting to join any trials as of yet.
One thing I have been nagging Mark about is heading back to school, his old job was full of chemicals and he is very afraid of going back. He has decided to get into the medical field. Is this a good move with brain cancer? It would be 3 years of school full time.....alot could change is 3 years with his tumor.....what do ya'll think?
Praying for everyone with this awful cancer! But they now have that laser which cooks the cancer cells, even getting rid of the stray ones! Anyone with a GBM less then 4cm please look into it! the FDA is approving the treatment in a few weeks! Even the Doctors at Dana Farber are exicted about this new break through. Abby the woman we saw, said they no longer give prognois's of 9-12 months with GBM, saying is more like years now! She has a GBM paient that has used Avastin for 3 years!
Krista |
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plugh
Regular
Joined: 18 Oct 2007
Posts: 48
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| Posted: Wed Mar 11, 2009 7:09 pm Post subject: Re: My hubby has what they call a "mixed" brain tumor |
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| Hi Kristalee, I posted a little while ago to this thread. I'm so sorry you and your hubby are having to deal with this and sorry too for everyone in this situation. I had a grade 2 Oli 90% removed 18 months ago so am in watch and wait mode. Could I ask you for some info on the laser treatment you mentioned in your last post? Thanks and good luck. |
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Kristalee
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Joined: 06 Nov 2008
Posts: 43
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plugh
Regular
Joined: 18 Oct 2007
Posts: 48
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| Posted: Wed Mar 11, 2009 8:17 pm Post subject: Re: My hubby has what they call a "mixed" brain tumor |
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| Thanks Kristalee - I'll definitely be asking my Dr. about this at my next MRI. |
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Kristalee
Regular
Joined: 06 Nov 2008
Posts: 43
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| Posted: Wed Mar 18, 2009 7:56 pm Post subject: Mark has bleeding gums |
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Hi all,
For the last few days Mark has had alot of discomfort in the gum area of the mouth. He also has canker sores and is running a low grade fever of about 99. We went to the dentist and were told it was due to radiation.
And also , I have the hardest time getting Mark to brush his teeth, its really gross, he would go a few days without brushing.
The dentist seems to think there is no infection......but he can't even chew food without being in serious pain.
Can the fever not be related to the sores and gums? It would honestly make more sense that he has gingivitis.....
Anyone else deal with chronic dry mouth ? Krista |
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4lindsay
Regular
Joined: 12 Apr 2008
Posts: 31
Location: Seattle
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| Posted: Thu Mar 19, 2009 12:10 am Post subject: Re: My hubby has what they call a "mixed" brain tumor |
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My husband and I had a condition commonly referred to as "trench mouth" that made our gums and the whole inside of our mouth so sore that we could only eat yogurt. We had a fever and it was awful! It sounds like he could have the same thing. The recommendation is a peroxide based rinse. The doc also gave us a liquid that you swish around that has lidocaine in it to numb things a bit.
Hope he gets it under control and is on the road to recovery!
Dianne |
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Kristalee
Regular
Joined: 06 Nov 2008
Posts: 43
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| Posted: Thu Apr 30, 2009 8:11 pm Post subject: update! |
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Hello all
Mark had his follow up MRI today at DF.
It wasn't what I wanted to see.........no tumor, but Dr. Norden said it was stable, no growth....it was enhancing in some spots, which is strange , dr.Norden is unsure what that means as well. He says it hasn't grown, but was hoping the spots would be gone..........arghh.
The good news is, Mark was included in a clinical trial for (VEGF trap) Norden is very excited about it, says it's done better than Avastin, its from the same family of drugs. He'll be taking temodar with VEGF infusions, the temodar cycle will change to 21/7 ,which they think might be a more effective dosing cycle.
So, a whole YEAR of this VEGF trap, plus temodar. I am scared, but grateful Mark was able to join this trial, which is phase 1 as of now.
Keep on keeping on everyone!
Krista |
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brainman
Site Admin
Joined: 13 Oct 2005
Posts: 5617
Location: Tennessee
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Kristalee
Regular
Joined: 06 Nov 2008
Posts: 43
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| Posted: Fri May 01, 2009 10:20 pm Post subject: Re: My hubby has what they call a "mixed" brain tumor |
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Hi Bman,
Mark starts the Flibercept (sp) trial may 5, they will be doing blood draws every week and I'm not sure about the MRI's, maybe every 2 months?
Since Mark's tumor is a duel cell, I am wondering if the enhancing dots inside the tumor are the grade 3 astro and the unehancing is the grade 2 oligo, but than again oligos are know for the vascular nature.....I'm confused. The tumor bed, or at least the resected portion is full of fluid, which Norden says "will always be there" I wanted to say "why's that" but, am soon learning Dr.Norden hates all my questions...tee hee.
I am hoping this is a good decsion we are making, I am nervous about what changes the tumor will make, what if it isn't good changes....I would love to wake up , just for one day and not know Mark has a brain tumor, I wonder how that would feel, for Mark it'd be beyond words I am sure, and for me maybe id wouldnt be such a jerko all the time 
Oh yes, I am a makeup artist for MAC, and its prom season, I found myself on edge with the annoying girls and their mothers breathing down my neck about their eyeshadow being to dark, or not enough. I wanted to scream "I dont care, my husband has a brain tumor!" I guess these MRI's make everyone on edge....
Halp, I think I am losing my mind  How do we cope better! There has to be something better than "take it day by day" cause Prom season just started and tomorrow is a lonnnnggg day of appts.... 
Ok, I am going to bed
Krista |
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