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4/13/2016 1:57 pm  #1


Prayers would be awesome.

My fiance definitely needs whatever positive thoughts and prayers you can give her. She starts IV chemotherapy on Friday to fight off a rapidly growing tumor in her frontal lobe. This tumor is about 10 weeks old and somehow is the size of a golf ball. Last week she got a migraine and went into the ER for a shot. When it didn't help she went to her doctor the next day. After an MRI they found this thing, and put her on chemo pills. After a second MRI with contrast (friday of last week) and a biopsy, they decided to ditch the pills and immediately start her on IV chemo. Surgery is an option, but they want to see if it responds to the chemo. 

Good news, her migraines have leveled off. There's a lot of ways to take that, but none of them are negative. Could be she's just used to them, which isn't a medical improvement, but less pain is still a positive. I'm worried sick and holding strong for her. She's resigned to the hell she's got to deal with, and a battle that could last a very long time (2 years at the longest with her trials, radiation, chemo, and finally a surgery and full recovery). Her survival expectancy is 85% which is about 15% less than I would be happy with, but still a far more optimistic number than it could have been. 

So if you talk to God, Allah, Buddah, or just have some spare positive thoughts, throw them at her. She's a wonderful woman, and really doesn't deserve this. She puts up with me, that almost qualifies her for a Nobel...

4/13/2016 2:08 pm  #2


Re: Prayers would be awesome.

Oh my goodness. Wishes for a speedy and favorable outcome heading your way ...

4/13/2016 3:58 pm  #3


Re: Prayers would be awesome.

Terrible to hear, and definitely wishing that everything turns out well for both of you.

4/19/2016 9:55 am  #4


Re: Prayers would be awesome.

Just seeing this now. The best to both of you, Alz!

4/19/2016 12:40 pm  #5


Re: Prayers would be awesome.

We're on IV Chemo, she just finished her first week of treatment (this cycle is 5 weeks, 2 times a week). The outlook is still positive. I'll continue to update as things move along. 

Thank you for the thoughts. 

     Thread Starter

4/19/2016 9:31 pm  #6


Re: Prayers would be awesome.

I missed this as well alz.  Ill be pulling for you and your lady.  I've had several similar circumstances in recent years with people i know or my wife knows.  Idk if it is because im getting old or what but stuff like this seems more prevalent.  Keep us updated and youll be in my thoughts.

4/25/2016 2:08 pm  #7


Re: Prayers would be awesome.

Well. Things are not good. The chemo apparently didn't even slow this thing down. New scans came in, and this thing nearly doubled in size from it's original (nearly the size of a golf ball). 

They will start her on very nasty chemo and go to surgery when they see improvement in the size. I'm however skeptical about this whole thing. They took a biopsy last week which they didn't have the biopsy for until today... Glioblastoma. The absolute worst tumor there is. It's ugly, and comes in two versions. Seriously aggressive and almost as aggressive as the other. Her's is "not connected" which means if they can make a dent in it with chemo, they can get back to the hopeful happy place where we were 2 weeks back where surgery was a solid option, and take it out (hopefully all of it). They say there's definitely reason to stay positive. I will in front of her, but I have to be honest, I don't see where this fountain of fucking happiness is supposed to come from exactly. Are there really people out there who can "be optimistic" through something like this? The odds of living 5 years beyond the diagnosis of a Glioblastoma? Less than 5%. 

So I'm not going to lie. I am fucking terrified, I see no reason to be positive. 2 months ago we were in a perfectly happy awesome relationship. 1 month ago she had a migraine. Today there's a very real possibility she won't live through 2017, maybe not even Christmas. I know I'm supposed to be positive, but the only thing I'm positive about is that this shit IS NOT POSITIVE.... 

This is fucking bullshit... I've never felt so fucking helpless in my life.
 

     Thread Starter

4/25/2016 5:49 pm  #8


Re: Prayers would be awesome.

My wifes, best friends, husband passed away from this very same thing a handful of months ago.  It was about a year battle but there was some good times, especially at the beginning.  I certainly hope for a better out come for you guys but the most positive thing you can do is take advantage of the good times you have.  Honestly that should be true for us all.

4/25/2016 7:56 pm  #9


Re: Prayers would be awesome.

I wish I had some magical words to share, but I don't. All I can say is be as positive as you can for her, and when you need a place to vent, cuss or just generally be pissed at life bring it here.

4/25/2016 10:01 pm  #10


Re: Prayers would be awesome.

Oh no. Alz, I'll echo what Fors wrote and keep hoping things work out.

4/25/2016 11:48 pm  #11


Re: Prayers would be awesome.

well the immediate update is that we're beyond the shock. I'll be happy to vent in here but also share great stories. she's a remarkable lady and deserves to be celebrated, regardless of what comes. I'm very lucky to know her.

Last edited by alz (4/25/2016 11:48 pm)

     Thread Starter

4/28/2016 11:35 am  #12


Re: Prayers would be awesome.

Well some more uplifting news. We're still in a very heavy fight here, but the tumor is not bigger than the last scan. It's also not smaller (at least not noticeably, but she only had 1 heavy chemo treatment). The doctors are optimistic of this, and the fact that it still hasn't bonded with the brain tissue. It's not connected, so the thought is if they can shrink it, it may be something they have a decent chance of actually removing. 

I've spent a lot of time reading on the few who do make it significantly past this diagnosis. Helps to see there are people that have made it 20-25 years beyond. A man who wasn't expected to raise his children getting to watch his grandchildren grow up. 

We're not out of the woods, we're not even close to that, but for the first time in a month, the news was not negative.

     Thread Starter

4/28/2016 1:51 pm  #13


Re: Prayers would be awesome.

Best thing I've heard all day, Alz. Any good news is good. Thanks for keeping us posted.

5/03/2016 9:54 am  #14


Re: Prayers would be awesome.

Need to make some minor corrections to this. 

It's not 1 tumor, it's actually 3. The last set of scans were 3D which revealed the multiple tumors. Truthfully this sounds awful, it may be better for the cranial pressure at the present time. There are 2 tumors that are considered very accessible but the third is the one that they really want to see get smaller due to it's location. That's also the one that displayed a few millimeters of shrinkage, so that's the best of the three. While the other 2 did not decrease in size, they stopped their insane growing, so that's also a positive. Also none of the tumors have developed and metastisized into the other tissue or cells. Huge positive. Since they aren't growing, the risk of this occurring is less while we wait trying to get her in a better position for surgery.

I also came across a cousin of a friend of mine, JJ Hanson. This guy is a monument to man. He declined a commission to West Point because it wasn't badass enough. Instead put himself through college and joined the Marine Corp. After combat deployments in Iraq, he came back to the states, his duty fulfilled. He had a seizure at work and was diagnosed with his own trio of GLB tumors, given 3 months to live and sent home to put his affairs in order. He got a second and third opinion and had surgery done at Sloan Kettering in New York. He followed it with radiation, chemo, a clinical drug trial designed to minimize the blood brain barrier during chemo, and is about to hit his 2 year mark post diagnosis. There's no secrets with this man, he has become a bit of a political activist against assisted suicide. He's found success with hard exercise and a Kenogenic diet. He drives his body to require any nutrients to rebuild muscles, as opposed to leaving it available for cancer tumors to devour and grow. I talked to him at length on the phone and my fiance is making some life changes to facilitate the things he's found success with. 

The next scan for us is Thursday, and while the news is not good, it is still better than it was last scan. Hopefully it continues to improve, and we can get her into surgery to remove these things. Next chemo treatment started an hour ago, next scan is Thursday. Keep the prayers coming, they are definitely not hurting!

     Thread Starter

5/03/2016 10:21 am  #15


Re: Prayers would be awesome.

I'll continue to keep the two of you in my thoughts, Alz.

5/06/2016 10:58 am  #16


Re: Prayers would be awesome.

Scan day yesterday. Not much size changes, but the 2 tumors in the back grew together and are now 1. 

I'm losing my patience with BJC. This diagnosis is typically followed with IMMEDIATE surgery and they pick up the fight with what's left. These guys are going outside the box with this chemo first treatment and so far we're just holding water. 

I'm hoping for surgery soon...

     Thread Starter

5/09/2016 9:32 am  #17


Re: Prayers would be awesome.

My fiance is calling every specialist within a 500 mile radius, and then some today, looking for other surgical options for this. It's scary, brain surgery is always scary, especially removing tissue, but that's a mountain we will need to cross for her to have any hope of being a long term survivor.

Keep praying, it's needed, and appreciated. I'll update more with the field trip details of where we might be going to visit.

     Thread Starter

5/09/2016 10:55 am  #18


Re: Prayers would be awesome.

Fingers crossed Alz.

5/12/2016 3:16 pm  #19


Re: Prayers would be awesome.

New scan today, the tumors are shrinking, maybe not as much or as fast as the doctors would like, but the scan today was a little better than the last one. 

     Thread Starter

5/12/2016 3:25 pm  #20


Re: Prayers would be awesome.

Thats great news.

5/12/2016 6:43 pm  #21


Re: Prayers would be awesome.

Good to hear things are going in a positive direction.

5/12/2016 8:45 pm  #22


Re: Prayers would be awesome.

any good news is good news

     Thread Starter

5/13/2016 3:16 pm  #23


Re: Prayers would be awesome.

Surgery scheduled for next Friday @ 9:30 AM. Might be multiple surgeries. but this will be designed to approach 90% removal. Melissa is hypoglycemic and does not clot, so they don't want to cause her too much stress, and would rather go after this in a few steps.

But the first one, in a week. Keep praying, we'll keep moving forward.

     Thread Starter

5/13/2016 4:21 pm  #24


Re: Prayers would be awesome.

Considering you were hoping for a surgical option, and at the risk of sounding too optimistic, I'll take this as good news.  Hope it's a start in the right direction.

5/13/2016 5:13 pm  #25


Re: Prayers would be awesome.

it is good news for sure. just a total crap shoot. doctor goes in with a guesstimate as to what he can do, reality may be better or worse. recovery is anyone's guess, and possible short term and long term side effects cam be anything that the brain controls!

so it's pretty terrifying. even though it's needed.

     Thread Starter

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