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GBM - My Dad, my Hero

stonybrook66
Posts: 8
Joined: Apr 2011

My Dad was diagnosed with inoperable Stage 4 GBM nearly 8 weeks ago. Symptoms began with him becoming forgetful, short term memory only. He left for the hardware store and forgot where he was going and what he was doing. Primary doctor did an immediate scan to reveal a large brain tumor, 3" x 2" inches. Dad is a previous cancer survivor, non-hodgkins mantle cell lymphoma, been in remission nearly 11 years. We went to Portland that evening for biopsy the next day. Tumor too large to remove. Full body scan revealed tumors in kidney area and lymphnodes. We don't know yet if the other areas of tumors are mantle cell, or what yet. Doctors don't want to even talk about it until they get through the initial treatment for the brain tumor. Dad started his treatment of chemo (Temador) and radiation 6 weeks ago, and finished radiation last Friday, and chemo yesterday. Other meds he takes are Dexamethazone (beginning to wean off), had trouble with blood clots (treatment Lovenox)and had to have daily injections in his stomach, and newest issue is he is diabetic (most likely caused by the Dex steroid) and has to have insulin injections daily.
Seeing him battle this is extremely painful. He is the essence of life, love and living. He continues to bring laughter and joy to everyone he encounters. Watching my mother, his life-partner and soulmate of 50 years go through this by his side takes my breath away, it is so devastating. They are the fiber of each other's beings. She is my dearest friend,the greatest nurse to my father,and although she is being so brave and couragous along side him, it is eating her up inside.
Appointments scheduled this week with oncologist, hopefully they will have the next plan in place and an idea of what is next.
My heart, thoughts and prayers go out to everyone whose life is touched in some way by the monster cancer.

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

I feel your pain...I am going through this with my sister.We started this war Feb 22. Her GBM is non operable too. We are on day 20 of radiation and taking temador and avastin. She to is also being weaned off decadron. Make sure you see a neuro oncolgist and not a general one.

deja98408's picture
deja98408
Posts: 12
Joined: Apr 2011

I am sorry to hear about your father. My father was diagnosed with GBM 4 October of last year. He has had 2 surgeries and has been on a few different treatments. they had to stop all treatments as he developed another tumor... he is scheduled for another MRI next month. I was diagnosed last month with a GBM 4! I had the large one removed, they said they couldn't remove the other 2 because of the location. I have been undergoing radiation for 2 1/2 weeks now (along with temodar). I think i am tolerating it pretty well. The biggest issue i have is thrush in my mouth... YUCK! I feel better and better every day. I just dont understand how me and my father have the same thing! ugghhhh.... A positive attitude helps alot. I am thankful for EVERYTHING EVERY MINUTE. My prayers will be with your family.

kloesweet
Posts: 2
Joined: Jun 2011

I am glad to see that you are sounding so positive, my grandfather, PAPA, is the same way. My prayers to you and your family.

tinishaw86
Posts: 1
Joined: May 2011

This sounds like what my dad is going through right now. We just found out about the tumor on his brain thursday and since then it's one thing after another. Like most people, I'm not too educated on this whole brain cancer deal or what are the best treatments for it. They want to try radiation on his brain to shrink the tumor. I just hope that treatments don't kill him. I've read some post about the radiation being the cause of killing the patient. Are there any other treatments beside radiation? They said can't go in and remove the tumor because his heart isn't strong enough. I know everyone eventually passes away, but he's my dad, he's never supposed to die!

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

Im sorry to here about your Dad. Sence you just found out Thursday I would guess that you dont know what kind it is. My sister has GBM. They cant operate on her because they said it is to deep in her brain. We are doing radiation temador( chemo pill) and avastin. Everything was going pretty well until Friday. Her platlets dropped. So they are holding the chemo for now.
Have you seen a neuro surgeon yet? My best advise is to see a neuro surgeon along with a neuro oncol. Dont settle with what a general oncol has to say. We are just two months into this nightmare.
We have not had any problems with the radiation and only have 5 more to go. When you start the radiation it can cause some swelling in the brain as it starts to work on shrinking the tumor. That swelling can cause confusion and weakness on one side of the body. When that happens contact your doctor right away. They will more that likely start him on decadron which decreases the swelling which helps.
I hope you have a good support system with your family and friends. This site has helped me, its given me a little hope...
I know how you feel I really do. I lost my mom along time ago. My dad is still living and I worry about that knowing that that will come. But I never ever thought about losing my sister ever. I just though some day it would be just me and her...And I am not dealing with this well at all. Im praying that we get a miracle...

stonybrook66
Posts: 8
Joined: Apr 2011

Haven't been on this site in a few weeks, just seems like every day is a rollercoaster, new symptoms and complications. Dad finished his first round of chemo and radiation, his tumor inoperable due to size and location. I don't think he can have anymore radiation, because of previous lymphoma treatment years ago. Will start next round of chemo this week, provided they can determine what the rash is that is all over his upper body. Hasn't had the MRI or scan yet that they said he would have 4 weeks after he finished chemo and radiation, so we don't know if there is any changes in the tumor. My gutt tells me that it isn't any better, memory worse, mobility deteriorating, vision changes, muscle spasms, swelling in his feet, blood clots, increased sugar levels requiring insulin, couldn't be weaned off steroids as he had severe reaction.. Now we all second guessing, should we seek second opinion? Are his current team of doctors doing all that can be done?
I hear you about praying for miracles, hang in there and take care of yourself.

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

I never did like rollercoasters..We have been through a lot the last few weeks too. How many days of radiation has your dad had? What like of chemo is he having?My sister got a rash that first week of radaition, a doctor had put her on bactrim so they stopped that and it slowly went away.Also that first week she started having weakness etc. She had a sudden left side weakness and I freaked and made her go to the er. They did a MRI. I didnt ask about the tumor size, because I was to afraid to know. But the swelling in the brain had increase to the middle line. The swelling was making all the symtoms. Started decadron and avastin and they went away. The radiation oncol explained that the radiation would make things worse before better. With the break down before the clean up.The avastin does the clean up.
We had a big bump in this road with sepsis.Yeserday was the first MRI.I have my phone by my side waiting for that call. I didnt get much sleep, pretty scared...

connsteele
Posts: 232
Joined: May 2011

Sorry to hear about your dad. How is he doing? We are having a similar situation with our son (age 34). He has a GBM and has just finished his second week of radiation and Temodar. He has severe gait/balance and speech problems, which started after surgery (tumors couldn't be removed) but have gotten worse since on radiation. They said radiation might cause things to get worse before they got better, but this is even a more rapid decline than even they thought. In just a week's time he went from being fairly mobile, with just a little wobbly-ness, to being in a wheelchair. The docs don't know if this decline is from brain swelling due to the radiation or tumor progression. For a week he was on 12 mg. of Decadron, which didn't help things. Yesterday, the chemo doc said to double the dose to 24 mg a day. She said that this would be a good test to see if it is swelling or tumor. If the gait/speech don't improve or still gets worse over the next week, then it's a sign of tumor progression. About the only difference we can see since he's been on the Decadron is that he's not sleeping all day.

For some reason they are hesitating ordering an MRI mid-treatment. Said it's another uncomfortable procedure to put him through and no matter the results, it wouldn't change the treatment protocol...for now.

I hear your concerns about getting a second opinion. We wondered that too. We are in the Washington DC area, and he is being treated by docs in the Inova health care system, a fairly huge system that I believe has resources and docs who are connected to the cutting edge of new research and treatments. In fact, his radiation doc conferred with a doc from JH and Massachusetts General. We had considered taking him to Johns Hopkins for second opinion which is about 1 1/2 hour away but one has to consider what we would be putting him through: the overwhelming bureaucracy of another huge hospital system, more tests, new docs, more jostling and driving to appointments which have been exhausting to him now. It's a hard question and I don't think there is one pat answer for everyone. All the best to Dad and your family.

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

My sister was having left sided weakness one week into radiation. The doctor told us it would get better before it got worse. I had went with my sister to radiation that morning and met her in the ER that same night. I was shocked at the change. They started her on decadron that night. The ER sent her to MRI. They didnt say any thing about the tumor size and I was to afraid to ask but the swelling had very visable increased it was making a shift that I could clearly see. It took about 2 weeks to clear up and at that point she thought it was 99% better.She started avastin too, which the doctor thought would help also. Is your son on avastin?
They also told us that they wouldnt be doing a a MRI during the treatment, its just because we went to the ER. The trouble with this beast we are fighting is time. I want a second opinion too, but we are on such a fast rollercoaster ride how the hell do we get off to go somewhere else. We saw a few doctors in our system but nothing out side. They all agreed not to operate. They made us go to a general oncologist but a neuro oncoligist is there to consult with him. I hope and pray they are doing the best, and not just writng us off. We fired the first one because of that, he was so kick back that he just said things will come up. Didnt give her a clue as to what, or what to do if there were changes,even when she asked for some kind of list. Then the weakness started and he didnt respond. Thats when we went to ER, and fired him...

LuckysMom
Posts: 4
Joined: Jun 2011

It breaks my heart to hear so many people going through similar situations with their loved ones as I am going through with my noldest son. My handsome, strong boy has had a brain tumor in the center of his brain since he was 9 yrs old. At that time that they discovered he had it, he just needed a third ventricular shunt placed in his little head because he had alot of fluid build up. We took him back every 3-6 months for follow ups & MRI scans. His tumor was then thought to be non cancerous as it would only grow about 1 mm every 6 or so months. This past late September he started vomiting again and we new it was due to his tumor. Little did we know it had grown a substantial amount. He had an actual shunt placed in his head to help with the extra fluid. His small shunt had been blocked by the growth of the tumor. He had another MRI scheduled for December, and we took him. After the MRI he was to go see his neurologist. He started feeling funny and felt numbness in his head. He had a seizure in the waiting room. It was such a terrifying experience for me and my husband. They rushed him to the ER. Upon looking at his new scan they now said his tumor was a stage 3. We lost it at the hospital, and thought our life was crumbling down. We stood at the hospital with him, hurting for our other 3 beautiful children who had to stay at our families home. Few days later the Oncologist called us in for a private talk with him. He showed us the MRI scan, and showed us how the tumor had spread to the majority of my babies little brain and even down his spine. He told us there wasnt really anything we could do for him. We should just take him home, make him comfortable and let the disease take its course. We both lost it!! I couldnt eat or sleep for several days after that.. We did not agree with the Dr. We chose to fight for our sons life and do all we can to have him with us longer. He underwent 30 sessions of the strongest radiation they can give anyone and has been taking Kepra twice a day, Tarceva every day and Temador once a month for 5 days. Thank God he feels no pain and has no nausea. He is doing pretty good considering how advance and severe his cancer is. We pray every day and thank God for every day we have him with us. We have another MRI scheduled for this Thursday 6/16/11. And I pray theres only good news!!!! He has a few problems here and there and we really have to watch him as if he was a very small child. But its worth having him with us. I have been so scared to read stories online about similar stories, but i have found some that have given me more hope. It hurts so bad because my son has an adult cancer, there are only about 6% children who get this type of cancer.. Any wonderful news would be great.

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