New caregiver here - here's our GBM story (LONG!)
My name is Gina and my husband Dan is 41 years old and was diagnosed with GBM in October 2011. We have 2 boys (3 and 5). After a few months of headaches and being treated for a sinus infection, he went for a sinus scan where the tumor was found and he was told to go immediately to the ER. We live near Hopkins thankfully so he was immediately transferred from our local hospital to Hopkins after confirming a tumor. Within days he was in surgery getting a craniotomy. The location is right frontal. They couldn't get all of it with surgery w/o a risk of affecting his left side motor skills so he was to start treatment asap. That all changed since a week later his symptoms came back worse. The MRI showed the glioma had already grown and moved so another surgery was necessary. That one affected his motor skills and left him very weak on the left side.
In November he began PT/OT along with 6 weeks of radiation along with temodar. At this point he was walking on his own with a cane and could even care for himself. He completed radiation mid January and began the temodar once per month. In March he became so weak that he was unable to walk and do anything for himself. He began to have seizures and was hospitalized again. They also found a pulmonary embolism and started blood thinners. His doctor wanted us to stop the temodar for the time being since he was too weak to continue.
In April he got a routine MRI and they didn't find any growth but they did find 2 intracranial bleeds so he was hospitalized again and they had to stop the blood thinners and put in and IVF filter. He was so weak after this hospital stay that he did some time at an inpatient rehab for 3 weeks to get stronger. The day after coming home, he fell and had to go back to the hospital. This time they found compression fractures in his back. He did more time in rehab but he was just unable to walk on his own anymore.
I lost count of the number of times he has been hospitalized since diagnosis but it's a lot. He received home care which was nice having PT and OT come to the house but insurance stopped covering it so we had to switch to hospice to get help.
We now have a hospital bed in our house, he cannot walk and I am the only one that can transfer him to a chair, his left eye waters all day long, he has issues chewing certain foods, he slurs his speech, has no use of his left arm/leg at all, and much much more.
Basically I feel like I am watching him die before my eyes. I feel like this is a bad nightmare and I can't wake up. How does one go from healthy, working out, coaching baseball and playing with our boys to laying in bed all day long unable to feed himself?
I read a lot of success stories and wish so badly I could relate. But for us, the journey is way different. The hospice nurse feels that once the radiation effects wear off he will decline. And he is no longer eligible for treatment due to all his other health issues.
I found this forum by googling for support. The NBTS forums seem pretty dead so I hope I get more support here and people can relate to what we are going through right now.
Thank you for reading. Sorry so long!
Sorry to hear your story. I was 42 when diagnosed with a right-frontal GBM and have a 5-year old - so can definitely relate.
You guys really have had a rough ride though! Sounds like everything that could go wrong has. Even though he's weak, it's too bad they won't at least give him Temodar to try to knock the tumor back a bit.
Keep strong and you'll all be in my prayers.
I think you caregivers are angels by the way. I wouldn't be where I am without the support of my wife.
Glioblastoma IV, frontal lobe - Dx March 2011. Treated with standard Stupp protocol
Recurrence August 2016 (at 5 years PFS). Surgery August 2016, rechallenge with TMZ with immunotheraphy (nivolumab)
Welcome Gina- So sorry to meet you here. It is a good place to come to vent or ask questions. There are a lot of people here in the same boat or at least nearly the same boat. My best wishes to you and hope you have some good support from family or friends, this is a tough journey. Come back often and keep us posted on how things are going, I have found so much comfort here, I hope you find the same!
Spouse/Caregiver of 56 yr old male
Diagnosed Primary CNS Lymphoma 2/2011
HDMTX Chemo- 8 cycles
HDMTX Maintenance Chemo- 11 cycles
Complications: clots, kidney issues, slow clearance of
11/2013 Recurring clots in lungs/legs
Scan 12-27-13 all clear
Scan 3-13 all clear
Next scan in October, done and all clear!
Went early for scanxiety in Aug 2014, all clear!
Scan Feb 2015, all clear!
Gina, I hear you. I went through similar situation back in 2007. it's not pleasant and sometimes very painful. please don't give up hope.
this may seem silly but i found jokes and read them to the person i cared for everyday. she laughed at them all no matter how bad the jokes were.
there are options to consider, google "DCA"
also '3-bromopyruvate" from "Sigma aldrich"
there are options to try, better off than doing nothing
Originally Posted by ginak
a search engine for disease treatment options
I'm so sad and sorry to hear of your situation. GBM is the most serious brain tumor in adults, but many people are able to get back to some normalcy fairly quickly, but that sure hasn't happened in your case. It has to be very hard to be your husbands caregiver, and take care of such small children, too. Dealing with such a serious diagnosis is very numbing, so feeling like you're in a bad nightmare is very normal. Please use this forum as a place to vent, get others opinions, and share what's going on with us. We'll be here for you. My best to your family.
Gina, I'm so sorry to hear about your husband's illness. It seems to me from reading the tumor boards that GBM experiences fall into three categories: the extremely rare miracle cases (ie the ten- and 20-year survivors), the slow decline, and the crazily rapid crash-attack. The majority seem to be in the middle category, slow decline, and that's where my sister is.
Unfortunately your husband's in the last category. That really sucks. Some day when much more is known about this disease they'll know why GBM happens in such vastly different ways, and how to stop it, but now... sigh. Here we all are.
Originally Posted by GBMsibling
Yes! I feel the same way and for sone reason the people I have met at Hopkins are the miracles so they can't relate to me and all feel sorry for me. My husband has no quality of life at all and I'm his target for his mood swings.
The unknown sucks!
Fortunately, my 47 year old sister with GBM has not been prone to mood swings that are mean spirited. However, I was a caretaker for my father before he died of muliple myeloma 4 years ago. Oh yes, he had mood swings. I would let him let it out, then when he was done I would tease him or jokingly threaten not to help him next time. Sounds strange but we would find humor in these situations, and it has left me with even more cherished memories. Humor is a good form of medicine.
Last edited by luvmysis; 07-21-2012 at 07:19 AM.
My husband is an wonderful amazing man however since he too has mood swings and I too am the target. I remind him I'm here to help him not hurt him and when he takes his anger out on me I simply say. That hurts me. It hurts my heart when you talk to me like that. This makes him think and he stops for awhile.
I then remind myself, he is going thru alot!! I dont know how I would react if I were in his shoes. Then, I tell him how much I love him. I feel very blessed to have him with me, even though there are difficult times. I tell myself.... you have to go thru the valley and climb to reach the top of the mountain. I really enjoy our times on top of the mountain. I hope and pray you will have some "top of the mountain" times with your husband soon.
DCA of limited benefit
1) Sigma-Aldrich does not sell to the public.
Originally Posted by pubmedly
2) Dichloroacetate (DCA) is slow-acting and not particularly targeted or potent. It takes 3 months for it to reach blood levels high enough to alter a tumor's metabolism. In some patients there may be a clinical benefit, but the number of patients tested is too small to draw a conclusion on whether DCA is safe or effective. Thus far, there are no reports of tumor eradication in the medical literature. At best, it may halt or reduce tumor volume in some patients.
3) 3-bromopyruvate (3-BrPA) is highly reactive, unstable alkylating agent. It may be dangerous to use unless it is expertly formulated and administered. The only report of its successful use for human tumor eradication in the medical literature is by Young Hee Ko, et al.