My hubby has what they call a "mixed" brain tumor

Kristalee · Regular Joined: 06 Nov 2008 Posts: 43

We finally got the results for the chromosomes deletion back.
He has 1p but is missing 19q.....if he had to have one, I wish it was 19q Sad

How much will this effect his treatment? if any?
Chemo starts this sunday, radation on monday! I'm excited, we are finally getting this started after two months of waiting.
Hugs, Krista

brainman

It doesn't make that much of a difference. Back when I was first diagnosed, they did not even know about the gene deletions. It might make him 10% less likely to have a good response to the chemo. It probably will not change the plans at all.

Hugs back to you {{{Krista}}}
_________________
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

Kristalee · Regular Joined: 06 Nov 2008 Posts: 43

Mark is starting his chemo and radiation sunday and monday. He seems nervous, and of course I am as well.
I'm sure you all have heard of CDX-110 aka Oncophage. It seems really promising for GBM! The FDA seems like its almost ready to give it a broader release. The way it works is, they take cells from your tumor make a "vaccince" inject the tumor cells into the blood stream, and program you immune system to only attack the cells of the tumor, not the normal ones.
I saw a youtube vid of a guy of about 20 something dx with GBM, he's lived 5 years! He was doing treatment at UCLA using the tumor vaccince along with radiation and chemo. They are saying its prolonged lifes for up to three years for people with GBM.
My grandma had a GBM and died only four months after her dx. Let's pray this is a new ray of hope!
Krista

Kristalee · Regular Joined: 06 Nov 2008 Posts: 43

Mark went to his radiation appt today. His oncologist said he could see no tumor left! Just some residue from surgery! He hasn't started his chemo or radiation. I don't know how good this sounds for a brain tumor, but I feel a little better! The dr said they will do rad and chemo for the microscopic cells left behind. He starts his first radation "zap" tomorrow.
mark is saying not to get to excited but I can't help it :0! yay!
krista

brainman

Krista, this is wonderful knews!! Radiation and chemo should take care of the little tentacles that surgery may not have removed. Hopefully, he will live many more fruitful years.

I can understand Mark's reluctance to get over excited. As a glioma patient myself, I know that I always live with a sword over my head, so to speak Confused

That is quite normal... especially at the beginning. Just be there for him. Hope for him when he cannot hope Wink

.
_________________
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

Kristalee · Regular Joined: 06 Nov 2008 Posts: 43

Hi brainman!
Mark is feeling like you must feel, the sword of doom over his head. I keep talking about how great it is that the dr couldn't see his tumor on the scan. Mark keeps saying "the tumor is still there"! and he wont feel better till they tell him its in remisson.
I can understand that. I did let him know that some people on this forum, or many others that have brain tumors would love to get that news Sad

. I dont think he knows that his case, although bad could be sooo much worse. Thanks for reading my rant.
Krista

plugh · Regular Joined: 18 Oct 2007 Posts: 48

I totally get the whole sword of Damocles thing - 15 months since surgery and I still get and will always get the heebie jeebies about 3 weeks before my next MRI. No evidence of a tumor is absolutely fantastic news so congrats on that. But I will say I asked my neuro-oncologist about 'remission' and I was told the term does not apply for brain tumors sorry to say.

Kristalee · Regular Joined: 06 Nov 2008 Posts: 43

Hi Plugh

My mom asked what the goal of treatment is and the doctor did say remisson. Maybe she was trying to make me feel better. After 5 years with no new growth I thought it was deemed remisson? I understand things in the brain are different. Did you have radiation and chemo?
15 months and no new growth is awesome! I'll be praying it stays that way!
Krista

plugh · Regular Joined: 18 Oct 2007 Posts: 48

Hi Kristalee, I had surgery in Aug 2007. Gr2 Oligodendroglioma. I'm on watch and wait - no chemo or radiation. Raditation is a one time shot and chemo has a life time max per protocol so I was told watch and wait to save the arsenal for later in the event of regrowth and/or higher grade. I was also told regrowth could mean another de-bulking surgery. I was taken aback when I was told that remission does not apply. My surgery was 90% so maybe that is the reason - I will ask the next time I go again and will try for an email to see if I can get the underlying reason.

Kristalee · Regular Joined: 06 Nov 2008 Posts: 43

thanks Pulgh,

Are you doing any dietary treatment? I had Mark drinking 3 plus cups of green and white tea, now he is on his treatment and cant have antioxidants Sad

plugh · Regular Joined: 18 Oct 2007 Posts: 48

Hi Kristalee, I wasn't given any dietary changes to follow at all. I think I read somehwere that antioxidants should be avoided during chemo/radiation? Since I am on watch and wait that may be why I guess. Mark's Doctor told him to avoid these I assume.

Kristalee · Regular Joined: 06 Nov 2008 Posts: 43

yea, Marks doc said no. there is alot of controversy surrounding the use of supplements during treatments, in Japan green tea is used with chemo. As soon as Mark is done with treatments , I'm blasting him with green tea, flax seed oil and miatake mushroom extract.....He isnt allowed to have much refined sugar, soda, or processed foods.....before his tumor was found ,he lived a very bad lifestlye, poor diet, smoked for 10 years, didnt get enough sleep, NEVER drank water, always soda or juice...I'm convinced this led to his body not being able to fight off the abnormal cell growth...
Since you arent on any treatments, get some flaxseed oil or ground seeds, a good quailty loose green or white tea and cut out refined sugars. Of course talk to your dr. first, but these things can help....wow just reread my post, sorry for the ramblings......
Krista

brainman

Krista, 5 years is the standard length of time before the term "remission" is used. At least, I would never use that term unless I went for at least 5 years with no sign of recurrence. That does not mean that the cancer will not recur. Mark will still need annual MRIs to make sure the cancer is not there. But that is a long way away for Mark.
_________________
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

Kristalee · Regular Joined: 06 Nov 2008 Posts: 43

I know, he needs to be deligent about his treatment,
He told me he was sacred tonight, he never tells me how hes feeling on the inside. Poor guy, he is really scared.....breaks my heart, I ll him the people on the site are very intelligent, and know so much about BT . He is getting more interested at leat,..
zGoodnight all!
K

Kristalee · Regular Joined: 06 Nov 2008 Posts: 43

Hello everyone

Mark had a MRI done yesterday, we got the results. No visible tumor seen, just some fluid in the tumor bed. His doctor said the oglio part of the tumor is a grade 1 and the astro is a grade 3, I'm curious to know how much of the tumor is oglio and how much is Astro. The doc couldnt tell me. It might not matter anyway. Still going through rad and chemo.
I'm praying for clean scans to come! His doc also said if his scans are clean for a year, we could think about having a baby!
Krista

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