My dad diagnosed with Glioblastoma gr 4

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My dad diagnosed with Glioblastoma gr 4

by Lid89 on Sat Oct 17, 2015 04:19 PM

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My Dad hast been diagnosed with Glioblastoma gr 4 10/16. I'm lost and scared, I can only imagine how he feels. He is 55 and has always been active.He started off with what he thought were migraines, went to the Dr. And returned the next day when the pain worsened, he was sent to get a CT scan and from there was hospitalized. He had a 4cm tumor removed off his cerebellum 9/25. He has recovered well from surgery, has been as active as he can since. The neurosurgeon said if has begun to grow in and couldn't remove it all. We met with radiation yesterday, and meet with chemo specialist on Monday. We start planning with radiation treatment on Wednesday 10/21. They said he would receive treatments 5 days a week for 6wks. I've read success stories, and I just want to be hopeful so bad but I'm so scared. My parents are depending on me to plan appointments, ask questions, record answers and I feel so selfish but I'm scared. I can't believe this is happening to my dad. Someone please help me he hopeful, I need advice on how to help my dad during treatments. What should I expect? How do I make things easier for them at home?

RE: My dad diagnosed with Glioblastoma gr 4

by suegail1555 on Sat Oct 17, 2015 05:05 PM

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On Oct 17, 2015 4:19 PM Lid89 wrote:

My Dad hast been diagnosed with Glioblastoma gr 4 10/16. I'm lost and scared, I can only imagine how he feels. He is 55 and has always been active.He "" target="_blank" rel="nofollow">http://active.He " target="_blank" rel="nofollow">active.He started off with what he thought were migraines, went to the Dr. And returned the next day when the pain worsened, he was sent to get a CT scan and from there was hospitalized. He had a 4cm tumor removed off his cerebellum 9/25. He has recovered well from surgery, has been as active as he can since. The neurosurgeon said if has begun to grow in and couldn't remove it all. We met with radiation yesterday, and meet with chemo specialist on Monday. We start planning with radiation treatment on Wednesday 10/21. They said he would receive treatments 5 days a week for 6wks. I've read success stories, and I just want to be hopeful so bad but I'm so scared. My parents are depending on me to plan appointments, ask questions, record answers and I feel so selfish but I'm scared. I can't believe this is happening to my dad. Someone please help me he hopeful, I need advice on how to help my dad during treatments. What should I expect? How do I make things easier for them at home?

What a big job for you to conquer. I pray that you will connect with some cancer services that can help coordinate some of your responsibilities. My therapy and cancer group help me just by hearing others going thru what I go thru and listening to their coping techniques. I've learned that this battle is not mine alone. 

I will be praying for you and your family.  Take care and God Bless...Sue

RE: My dad diagnosed with Glioblastoma gr 4

by katbaran on Sun Oct 18, 2015 02:24 AM

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I'm so sorry to hear you're all going through this! The best advice I can give you is to talk to your Dad's social worker. There should be one assigned to him at the hospital. They can give you some guidelines about what to look for and if not, then talk to the surgeon's PA. They are VERY helpful. They can advise you the best ways to help and not be overbearing and how to keep a positive attitude. Support groups, in person will also help. It would be good if you could get your Mom to go as well.

As for helping with treatments. When radiation starts--make sure you have some plastic grocery bags in the car or a wastebasket in case he has vomiting. At home, keep a wastebasket next to his bed--no plastic bag, then you can just add a little water and flush it. At home, just do whatever you can, cooking, housekeeping, grocery shopping, whatever needs doing. You will know what to do when the time comes. Just jump in and help.

Best wishes for the best possible outcome!

Kathy

RE: My dad diagnosed with Glioblastoma gr 4

by rmp1399 on Sun Oct 18, 2015 11:20 PM

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I'm so sorry you are all facing this. Stay strong and positive. Don't read into the statistics online. Everyone goes through this differently. My mom was diagnosed almost three years ago, had one reoccurance and is doing ok now. During radiation be prepared for severe fatigue. That was the scariest thing for me to see. My mom would be on the couch sleeping almost all day. I was so scared that was it and she wasn't going to make it. It is a tough time but strength will slowly come back. We would encourage her to eventually take little walks when she could and it really helped. We realized that she ultimately needed that rest though and didn't push her. It was really hard for my mom to stay positive and not get down at this time as she felt like her body was failing her. Positivity and encouragement was key. She had the potential of falling into depression.....and she isn't one to take any meds for that....personally at diagnosis I feel like antidepressants she be standard protocol !! It seems so overwhelming but you can do it. I'd also recommend during this time to research clinical trials that you might be able to enter. My mom did the celldex trial...which she started after the initial six weeks of treatment.

RE: My dad diagnosed with Glioblastoma gr 4

by della8701 on Wed Oct 21, 2015 02:18 PM

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Hi i totally understand how you feel my dad was diagnosed with gbm 4 in 2014 and is still fighting it there is hope he recently had his second surgery and is back on chemo.keep going.ps is im new to this website but wanted to know if anyone reading can tell me if ccnu is less effective than temodar? The temodar was working fine for him until he had a break now they have put him on ccnu i dont understand why.thanks xx

RE: My dad diagnosed with Glioblastoma gr 4

by momroddey1021 on Wed Oct 21, 2015 02:35 PM

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Hello I just read your story about your mom and im sorry she has to go through this but it gives me hope to know there's people out there who can give me insight on what to expect.Im newly diagnosed with colon cancer stage 4 and I know it's at the worse stage of all but like anyone else I'm going to fight because I have the will to live just to ask how old is your mom? What stage is she in ? And how long ago was she diagnosed? 

RE: My dad diagnosed with Glioblastoma gr 4

by momroddey1021 on Wed Oct 21, 2015 02:49 PM

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Im very sorry about your dad sweetheart I understand what your feeling I was recently diagnosed myself with colon cancer stage4 and my daughter stays on me to express what I'm feeling she always keeps me uplifted when I'm feeling down and keeping to myself she will not allow me to see anything but life you have to not only be strong but speak strong in your faith .

RE: My dad diagnosed with Glioblastoma gr 4

by TimW43 on Thu Oct 22, 2015 02:35 AM

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On Oct 17, 2015 4:19 PM Lid89 wrote:

My Dad hast been diagnosed with Glioblastoma gr 4 10/16. I'm lost and scared, I can only imagine how he feels. He is 55 and has always been active.He "" target="_blank" rel="nofollow">http://active.He " target="_blank" rel="nofollow">active.He started off with what he thought were migraines, went to the Dr. And returned the next day when the pain worsened, he was sent to get a CT scan and from there was hospitalized. He had a 4cm tumor removed off his cerebellum 9/25. He has recovered well from surgery, has been as active as he can since. The neurosurgeon said if has begun to grow in and couldn't remove it all. We met with radiation yesterday, and meet with chemo specialist on Monday. We start planning with radiation treatment on Wednesday 10/21. They said he would receive treatments 5 days a week for 6wks. I've read success stories, and I just want to be hopeful so bad but I'm so scared. My parents are depending on me to plan appointments, ask questions, record answers and I feel so selfish but I'm scared. I can't believe this is happening to my dad. Someone please help me he hopeful, I need advice on how to help my dad during treatments. What should I expect? How do I make things easier for them at home?

First and foremost, other than to research treatment options and clinical trials, I would stay away from the internet. I have learned that no 2 tumors are the same, and seldom do 2 people react exactly the same to drugs and treatment.

I was diagnosed with a GMB grade 4, and I am 2 weeks away from celebrating 2 years since sugery with no relapse! At diagnosis, any internet site gave me 8-14 mos average survival. It would have been very easy to read that and give up. I give the glory to God, and a positive attitude on life for my current condition. You can sit and cry and make everyone around you miserable, or decide to live life to the fullest and smile all you can. I stunned my surgeon by going back to work 3 weeks after initial surgery. Ultimately I had to take disability due to loss of balance (worked on ladders every day). But I worked every day right through radiation and chemo.

Btw, I had little to no side effects from radiation or chemo (oral/Temodar). Radiation made me tired, but no nausea with it. I took Temodar and anti-nausea meds right before bed, and made sure to eat very light for dinner. I did temodar 2X140mg 5 days on, 23 days off for a full year. My oncologist wanted to stop after 6 mos, but since I was tolerating well he allowed another 6 mos. Maybe that has played a part in my current good health. IV chemo will be a different story. I also sought a consultation with the brain tumor center at Duke in Durham, NC. They have not treated me, but I go every 8 weeks for an MRI to watch for possible tumor growth.  I also take Modifinal (300mg/day) to help with fatigue.

Believe it or not, my next door neighbor was diagnosed with a GMB 6 months after me. We began to look at all the possibilities for why; water supply, radon gas, pesticides, etc., and this is an example of how tumors are different. He is 15 months since diagnosis and on his 3rd surgery.

Be positive and supportive, but don't treat him differenly. I hated it when people came up to me and said "how are you" in a child-like way. I'm still me and want to be treated as such. Take notes and ask lots of questions. And have the support of a good oncologist.

Best wishes to both of you on this tough journey.

RE: My dad diagnosed with Glioblastoma gr 4

by hana84 on Thu Oct 22, 2015 02:00 PM

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On 10 17, 2015 4:19 Lid89 wrote:

My Dad hast been diagnosed with Glioblastoma gr 4 10/16. I'm lost and scared, I can only imagine how he feels. He is 55 and has always been active.He "" target="_blank" rel="nofollow">http://active.He " target="_blank" rel="nofollow">active.He started off with what he thought were migraines, went to the Dr. And returned the next day when the pain worsened, he was sent to get a CT scan and from there was hospitalized. He had a 4cm tumor removed off his cerebellum 9/25. He has recovered well from surgery, has been as active as he can since. The neurosurgeon said if has begun to grow in and couldn't remove it all. We met with radiation yesterday, and meet with chemo specialist on Monday. We start planning with radiation treatment on Wednesday 10/21. They said he would receive treatments 5 days a week for 6wks. I've read success stories, and I just want to be hopeful so bad but I'm so scared. My parents are depending on me to plan appointments, ask questions, record answers and I feel so selfish but I'm scared. I can't believe this is happening to my dad. Someone please help me he hopeful, I need advice on how to help my dad during treatments. What should I expect? How do I make things easier for them at home?

Source for a lot of information and also initial information
http://virtualtrials.com/

Do not give up. My husband (35) was diagnosed with GBM grade 4 month ago. We now do a lot of reasearch.

RE: My dad diagnosed with Glioblastoma gr 4

by tjsadowski on Thu Oct 22, 2015 03:50 PM

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I am a 16 year GBM survivor. As already suggested check Virtual Trials for a wealth of resources. Two things to consider are Optune which may be an option now and Gliadel if there is a second surgery. Ask you docs about these possibilities. If you are not at a brain tumor center you should consider a second opinion.
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