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alz81 01-14-2010 09:29 AM

Glioblastom stage 4
My mother was diagnosed with glioblastoma stage for Aug 13, 2009. Right after her diagnoses she had surgery. She completed all her radiations and chemo. She is currently not able to speak and has parzlized from her right side of her body. It has really been a roll coaster ride for me and my family. My mother is only 53 and was very healthy all her life. Everything just changed over night for her.She went to work and in the middle of the night had her first siezure. From that point forward she has never been the same. I live in new jersey and she was treated at Hackensack medical center. Currently the doctors are saying they cannot do anything else for her and she resides in a nursing home just mainly sleeping ..She is not able to speak anymore or doing anything. Is there anything out there that can save her I just lost my dad as well a year and half ago due to heart problems he was 64 may he rest in peace. I was thinking of getting a second opinion from sloan ketttering. anyone want to advise me what to do.

reachout 01-14-2010 01:57 PM

Re: Glioblastom stage 4
Hello Al

I am very sorry for your sad troubles. I want you to know that I understand and sympathize greatly with your roller coast ride with both parents in such a short time. A number of years ago, my parents were both diagnosed with cancer within a week of one another. My mom with breast cancer, my pop with lung cancer. One week later again, my uncle was diagnosed with lung cancer. Life became an exhausting nightmare for all of us... the patients, my husband and children and myself. Sadly, my pop and uncle died within six months of diagnosis.... strangely and sadly on the same day, an hour apart. My mom made it. As she finished treatment, I myself was diagnosed with a rare cancer.. a sarcoma. By the grace of God, I have survived. It was two years of riding the roller coaster of cancer and treatment. However, even in the hell of uncertainty, good things did come about. My children grew into extraordinarily compassionate and empathetic beings. Our family sustains a closeness of huge depth.

So, as to Mom and your family. However awful days may get, know that good things are also building at the same time. Unfortunately, glioblastoma stage 4 does not have a very good prognosis. Glioblastoma just gets so intertwined in the delicate areas of the brain. A dear neighbor of ours passed away from it maybe 5 years ago now. It was about a year from the diagnosis to the passing. Like your mom, he just slept a lot the last few months. His wife, a nurse, looked into options that might be available and there really were none other then the options already used for your mom. Ironically, his cancer hit around the same age as your mom is.

If your mom desires, there is always the possibility of clinical trial. Searching glioblastoma and clinical trial together would probably yield some results.

There is also a clinic in Philadelphia that specializes strictly in brain cancers.
I believe it is connected with the Children's Hospital in Philly. I know for me, going to a clinic in Boston that specialized in sarcoma is why my leg was able to be saved.

I think mom needs to be consulted about this if she is coherent. My neighbor made the decision that he wanted no more treatment. We really must honor the patients wishes in this. For me, the chemo that I took was so harsh that after 4 treatments that I said, "No more." And I meant it. Thankfully, my family did not argue it with me. With no guarantees that more chemo was going to cure me, I decided that whatever time I was going to have, I didn't want to be so foggy and sick.

Talk to mom. Let her wishes be your guide. Whatever may come, honor her feelings. I know you love her with all your heart. Especially after losing your dad fairly recently, it is heartbreaking to be possibly facing this with mom. I am so sorry. Whatever the decisions may be, remeber always that you are a good and caring son and that is what every parent longs for.

My thoughts and prayers for mom and for your family.

alz81 01-14-2010 10:42 PM

Re: Glioblastom stage 4
Thank you soo much for those kind words as they bought me so many tears hearing your situation. It does make you a stonger person and understand what life really is, apart from what society makes it to be. I am only 28 and not been marrired yet. I have two older sisters one in Houston and the other about a hour away from me in North Jersey. I see my mom everyday and speak with her even though she does not respond. My mom and dad lived with me so now Im alone in this empty house just filled with memories of them. I just wish my mom could have enough time to get better and have her wish come true to see me married and with a family. Thats all she talked about even when she first got diagnosed and was able to speak and had most of her memory right after surgery.

The doctors in hackensack hospital basically told us that they really reached the end and cant do much for my mom anymore. She finished all her radiation treatment and for chemo her platelet levels were too low to continue. She is currenly in a nursing home and doctors were talking about hospisis. I still have hope for her and its only been about 5 months since she was diagnosed. I am thinking about getting a second opinion from Sloan kettering but just trying to gather the funds of taking her there.

Also to add to the roller coaster ride I have applied for medicaid since she is only 53 and its been nothing but a nightmare dealing with the cruel people at medicaid. They are currenly trying to take my house away from me. Because she needs long term care like the nursing home she is at and it costs between 15000 to 20000 a month. I just hired a lawyer today that was fairly reasonable to take the case.

All I can say is prayers do go a long way and I will surely pray for your family and yourself to heal and make your pain go away. Please do keep and touch I'm Al I didnt get your name.

Like you said you have wonderfull caring compassionate kids and they will make you proud every step of the way. God Bless you and speak with you soon

reachout 01-15-2010 06:16 PM

Re: Glioblastom stage 4
Hi Al

Hope this finds you with at least some peaceful time today. How was Mom today?

Al, I want to let you know that if you do seek a second opinion, Mom does not to to travel at this point. Only her records need to be seen by another doctor and then see what is said. Another doctor may or may not want to see her.

Perhaps Mom being declared hospice could help also. I am sorry, I know that sounds so final. However, having my Pop declared hospice was what allowed him to stay in the nursing facility and be cared for. Of course, his circumstances were a tad different. He was seventy and still fully employed. However, his insurance maxed out. So we retired him while he was in the nursing facility. That put him on Medicare and that then kicked in to cover him under hospice. Otherwise, they were gonna send him home. He was paralyzed ( he had brain surgery to relieve the pressure as the cancer had spread there and was left paralyzed). My mom was so sick with her own cancer chemo... who the heck was gonna care for him??? Anyway, let the lawyer check out if declaring her hospice would bring you any relief.

Also, in my state at least, the house can NOT be taken as long as a relative is still living in it. Have the lawyer check that out also.

Al, part of the reason I shared my story with you is to tell you that I HAVE healed. It was a long road, but I am fine now and so is my Mom and my family. It hurts so to lose parents, it hurts so to wish we could do something, but are helpless. We are helpless sometimes, Friend, but never hopeless. Whatever happens with mom, you, also, will heal, Al. You will heal and you will grow as a human being. We go on living even in tragedy because we have no choice. And somehow, we cope and life brings us to a more even keel again.

You are a young man still and there will be happiness again in your life. because I was a mom when uncertainty came to me concerning my survival, I believe I know what is in your Mom's heart about you. She wants you to be okay... you are her baby and always will be. That was my greatest concern also. My baby was only 16 when I was so ill. I worried about what would become of her without me. I wanted to know she would be okay. As my older boys began to stand by her more and more, my mind eased; my worry lessened.

For my Dad, he was worried about my Mom. Worried about her treatment, worried about how his nursing care would be paid for. Worried that too juch burden was placed on me. You know what? I told my Dad that people were lining up to help get my Mom to treatment. ( that was a truth) I told him that money had come through for his care ( a truth, although he did not know he had been declared Hopsice). And I told him I was getting rest ( I had taken a leave of abssence from work).

For both my Dad and me, so much was lifted when our greatest worries were allievated. Whether or not Mom can respond, please let her know you are okay. Let her know in whatever way you can, that you are fine. Let her know that her love has guided you for all these years and always will. I think that is one of the best things you can do for her.

Cry when you need to, Buddy. Cry for Mom, but please, cry for yourself also. It is okay. You are hurting and sorrowful and must have sympathy for yourself because that is a healthy thing to do.

We will talk again. Until then, I will cry some tears for you because you are a man who has such great love in his heart and a man who is hurting. We are connected in spirit.


reachout 01-18-2010 06:45 PM

Re: Glioblastom stage 4
Heya Al

How are you doing? Just stopping by to say hello and tell you I am thinking of you.


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