Helpless

12 Posts | Page(s): 1 2  Next 

Helpless

by Barrett on Mon Nov 28, 2005 12:00 AM

Quote | Reply
Hello everyone. This is the first time I've posted anything on this website. I was just looking for a place to go to share my thoughts and feelings about what I am going through. On March 9th of this year my mother was diagnosed with glioblastoma multiforme. Prior to being diagnosed she had two tumors removed, one in the right frontal lobe and one in the back...not sure of the technical term for that area. She went through radiation therapy and was put on Temodar. Well, I found out that she has what is known as a "butterfly tumor" on her right frontal lobe now and there isn't much that they can do. They are going to try another form of chemotherapy but we've been told that surgically it isn't safe to operate and that we should check on hospice for her. I am 26 years old and completly beside myself. My mother is 57 years old and is my best friend in the world. I try so hard to have faith and to believe that she can beat this thing but unfortunately everything seems to be against us medically. I feel so helpless! Anyway, thanks so much for taking the time to read this. I appreciate it.

Helpless

by Debmac on Tue Nov 29, 2005 12:00 AM

Quote | Reply
I understand what you are going through. I am so sorry to you have to experience this at such a young age. My husband has GBM (he is 54) and my mother died 12/29/04 after suffering two years with multiple myeloma (cancer). My husband did have surgery, but his tumor grew back and he cannot have anymore surgery. The Temodar did not work for him and he is now on a chemo for colon cancer. I feel helpless too, and I am much older than you. All we can do is hang in there and do everything we can for them. We don't know what the future holds, just take one day at a time (I got so sick of hearing that phrase at first, but really it is all we can do.) Your mom is very lucky to have someone like you that loves her so much. Try to keep faith and hope. I don't have any magic words but if I can help you at all, let me know. We have two daughters about your age (25 & 28) and I know what they are going through. They too are very close to their dad, they both work for him and have for 10 & 12 years. Hang in there, I wish you and your mom the best.

Helpless

by Gagbm on Tue Nov 29, 2005 12:00 AM

Quote | Reply
Rauna, a GBM diagnosis is a terrible thing and puts you as a caregiver on one heckuva rollerocaster ride. My 31 year old wife was diagnosed with a GBM 7 weeks afetr giving birth to our son, so I get to be caregiver to both a wife and infant. That being said, there are a LOT of clinical trials of different chemo drugs out there and you didn't mention if you had contacted one of the brain tumor centers to get a second opinion. Temodar only 'works' in 30%-40% of those who try it. That being said, there are those whose tumors grew on the regulat 5/28 cycle but shrunk on a 14/28 cycle. There are also other traditional drugs such as BCNU and CCNU, and newer drugs such as CPT-11 and Tarceva that can be tried, as well as combinations such as CPT-11/Avastin. Don't ever accept one doctor's opinion that 'there is nothing else to do'. We have one friend we met with a GBM who checked himself into hospice so his family didn't have to watch him die. He recently moved back hime after 8 months of his tumor not growing. It is a long, tough fight, but keep the faith. If you don't have a doctor who is willing to fight for your mother, find another one who will. Good luck.

Thank You

by Barrett on Tue Nov 29, 2005 12:00 AM

Quote | Reply
I appreciate everyones support and kind words. My mothers diagnosis has completely consumed me. I have an older brother who hasn't helped me much with her. I know that things are different between a mother and a daughter but I would really like for him to take on a little more so that I feel like I can breathe. It seems he only comes around when things take a turn for the worse...and then he'll stick around for a few weeks and then I'm back to doing it alone. I do have a friend who helps me with mom, who has been there from the beginning but I try not to talk much about the way I feel with her because she lost her father in law to cancer last Christmas and I know its hard for her. I had so many questions the other day at the doctor...don't get me wrong, they have been wonderful to us and they aren't giving up on her, they are going to switch her chemo medication since the Temodar didn't work for her. Now she'll take it intravenously every three weeks or so. When my mom was diagnosed she was the center of every cancer seminar here in Oklahoma...they said it was rare to see two tumors growing in different spots at the same time. I don't know. I just know that she's been through hell and I know that I would take all the pain away from her if I could. Cancer is such an evil disease and it takes so many good hearted and wonderful people. Thank you all for listening!

Helpless

by Hopeful30 on Tue Nov 29, 2005 12:00 AM

Quote | Reply
I know exactly how you feel and I mean exactly. I lost my mother to GBM IV in January 05 -- only a mere 3 weeks after she was diagnosed. My mother also had a butterfly tumor, but it was in her parietal lobe. The effects were devastating in a very short period of time -- it was inoperable and she opted not to take treatment since she was told it would not cure her -- I was also the primary caregiver and it is by far the most difficult experience of my life -- one that has left many scars and I will never be the same again....I am so sorry for what you are going through. Try to spend as much time together as you can -- all you can really offer her is the comfort of your presence in the face of this terrifying disease. I can offer you one ray of hope, however....when my mother died I thought I would never be happy again and that I would not be able to cope. Things do improve over time. While she was sick, I too was completely consumed. After my mother died, it was all I could think about 24 hours a day, every day. I am now able to function much better although I miss her dearly. The one thing that a lot of people will not talk about with GBM is quality of life. I did not want my mother to die -- she was my best friend and I loved her dearly -- but she was suffering and it was horrible to watch. I am still sad, but not as upset and sick as I was watching her deteriorate. You will have a tough road ahead of you I am sorry to say. Try to be strong for your mother's sake even though it is not easy. You will survive and life will go on....

Helpless

by caring_daughter on Wed Nov 30, 2005 12:00 AM

Quote | Reply
It is so nice to know that we are not alone as children or spouses of loved ones who have been diagnosed with GBM IV. It has been only three months since finding out that my dad had this brain tumor, and, I think, that any of us in this situation can understand the pain to our very core. It is a devastating tragedy to consider losing someone that you treasure so dearly. For the first two months, I searched the web, library, etc. for all information on this tumor so I could educate myself on what to expect. I got quite depressed when reading over and over again about the prognosis, course of this tumor, etc. Earlier in Nov., I reached the point where I put my information away. I still turn to this message board and occasionally to question specific web sites. I temporarily felt at "Peace" (if there is such a thing)because I looked into my dad's eyes and saw a glimmer of the old twinkle once again. He is so courageous and has an inner strength that is remarkable. He is truly a hero to be admired. I continue to have faith in the possibility of a miracle, and this keeps me hopeful. My dad needs to be encouraged and hopeful too. I have tried to put this situation in God's hands completely even though some days this is difficult. I try to make myself available to help out my parents a couple of times a week and they are considering moving in with my family temporarily. Currently, they live one hour from me. It is true that life has dealt all of us, who are dealing with this type of tumor, a devastating blow. Allow your friends and neighbors to lend a hand ... Allow yourself to feel sad ... Savor the moments with your loved one ... Treasure each day you spend together ...

Reply

by Whynottexas on Thu Dec 01, 2005 12:00 AM

Quote | Reply
Hello Caring Daughter. My thoughts and prayers go out to you and all of you here. This is a trying time for sure. You mentioned relying on friends and neighbors in your message. Do you have any brothers and sisters to help you through this? Do you have a husband you can turn to that supports you? Have you thought about counceling? Family is the most important thing in life. They should be there for you as well as for any sick member in your family. If you have these, USE them Lean on them. Draw support for them. The are in this as well as you are and I am sure they are hurting as you are.

Brain Mets and Lung Cancer

by Tuxdevon on Tue Dec 13, 2005 12:00 AM

Quote | Reply
hello there i am new at this my mom was diagosed 6 days ago with brain and lung cancer how does anyone no how to deal with this i dont i pray each day its not like she is gone i have a question maybe u can rely to me if u wish the cels in my mom on the brain she will not go into remision i dont no what that means i think the radion will shrink then grow back can u share your story deanna

Helpless

by Garland on Wed Dec 21, 2005 12:00 AM

Quote | Reply
Mhop53...i was dx 03/05 and i too am inoperable an have no "cure". i would like for you to share your moms last days with me if you would. i know that we are all individuals, and are different, but i would like to know what to expect if i could. Anyone who would like to give me info..i would appreciate it.

Thank You

by Garland on Wed Dec 21, 2005 12:00 AM

Quote | Reply
Barrett...i know this sounds silly but, have you asked your brother for help. i have a sister who was taking care of my mom and we all thought she wanted that responsibility by herself. she never asked anyone, although we did different things we didn't want to step in on what she wanted. we really didn't know what to do.
12 Posts | Page(s): 1 2  Next 
Subscribe to this message board discussion

We care about your feedback. Let us know how we can improve your CancerCompass experience.