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GBM 2 month update

janellie's picture
Posts: 18
Joined: Aug 2011

Hoping to hear from some of my friends....this page is soooo hard to navigate, when I want to see posts of friends I cannot figure how to pull them up.....anyhow

It's been 2 months since my dad was hospitalized. He is in the hopspital today with his first bloodclot. It's large and they are starting thinners. He has 2 weeks of radiation and temodar left. However, he just seems weak and sad and grief stricken. Now with the blood clotting it seems this could be the first of many set backs to come.

I have searched for information on how quickly radiation and temodar fail without surgery and it appears that this normally happens about 12 weeks after it's finished. Based on what I see and read I feel like as soon as we finish treatment we are going to be rolling down the next and last hill.

For love of my sis, I'm so sorry to hear about your sister...I've tried to go back and find her original story and what she has been through but I cannot....I pray that you find peace and that your sister does not experience anymore pain. I pray the same for my dad....I feel like maybe we are working to extend his life for 4 months so that we can torture him for 4 months.....I don't see much quality for him now and certainly don't see how he will improve from here....

Hope to hear from you and would appreciate any advice on when and how to approach the subject of hospice, I don't think it's far away

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

Im sorry to hear about the blood clots. Wow we were there too. No two stories are the same. We just kept hitting road blocks every step of the way. Please dont jump the gun with hospice without knowing all the facts. Some people hit these bumps and things smooth out for awhile.
I dont know how to get back to my begining story either. I typed your name is the search line and found yours, but I have wrote a lot of these trying to feel better typing out my feelings.
My sister was dx Feb 22 2011. It was 1.8 x 2.2 cm, deep with in the right parietal lobe.It was non op. She did radiation and temador. We had to stop temador a week early and miss the last radiation due to sepsis. Sepsis was from the port being acsessed and a low wbcs that made it easy for and infection to take a hold. She just kept getting infections having low platlets and PCP from the temador and blood clots from the avastin. Then necrotic hip from the decadron. Nothing went right at all. Looking back and wishful thinking maybe if we didnt put the port in we wouldnt be here and this place now, I dont know. We cant change it now.
Wishing and praying good things for you and your Dad I know it is hard. I am having a really hard time with this all. I see where you put your e mail. I will e mail you. If you need to talk I am here.

janellie's picture
Posts: 18
Joined: Aug 2011

I would be so pleased to get an email from you....would love to be able to communicate in a more simple manner. This seems to help and to hear from real people who have and are living this nightmare....the doctors seem strangely mis-informed or just carry some code of silence/denial and offer optimism that is not realistic....

Dad will go home today but I am constantly watching for the next "sign" because there isn't anyone else who is willing to look at this and make difficult decisions.

When dad was diagnosed (Aug 8) he had 3 tumors 2.5 cm, 1.6 cm and the third was under 1 cm. They are in the thalamus and inoperable.... 4 weeks after diagnosis we had another scan and they had grown about 25 percent (I spend an unhealthy amount of time studying his scans) unfortunately he had already lost the left side before any treatment. This seems very fast to go from golfing, biking and exercising to a wheelchair in 8 weeks.... Mentally he seems pretty good because his tumors aren't affecting that area....

I think the guilt of sometimes wishing it would be quick and painless is hardest.

Posts: 358
Joined: Aug 2009

Janellie...saw your post this morning. My family was where you are today. My husband fought the battle against GBM for 15 months. I wish I could say they were good months. He too went through the roller coaster of setbacks, ER trips etc. When the last MRI showed new tumor growth, I knew in my heart we had to stop. He was paralyzed on the right side at that point and all the treatments presented to us were only going to buy us a month or two. Heartbroken we took him home and called hospice. Hospice was wonderful and I remember those final days as a united family surrounding him with love and care in his own home. This is not easy and I am so sorry for what you are going through. I think there comes a time to find some level of peace with the inevitable. You and your family are in my prayers.

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