Lost Husband to GBM

KMPonder

connsteele said:

Second brain cancer dx caused by previous radiation
Your husband and my son share the same histories. Our son (age 34) was diagnosed when he was 8 with a medulloblastoma. He had surgery, for which the surgeon said he got "everything he could see", and radiation, chemo (CCNU, prednisone, vincristine. While our son had long term effects of treatment, including growth hormone deficiency, hypo-pituitary, type 1 diabetes, and some mild learning disability, he went on to lead a full life for 26 years, including living independently, out of state with a good federal job, for 11 years. Then last April our world turned upside down. He was diagnosed with several, inoperable, AA3 tumors. They all occurred in the cerebellum, where he had the highest dose of radiation when he was 8. "The circumstantial evidence is overwhelming," the doc said, "that this second round was caused by the first radiation treatments." Even before this second cancer, I always wondered if we should have refused his having the radiation when he was 8. I feel so guilty about it.
They haven't given us a timeline/prognosis. All they said was that the treatments won't make it go away, just slow things down.
Our son had 4 weeks of radiation this second time around, but the radiation doc was concerned about re-radiating the brain (radiation necrosis). So, our son only received 2/3 the usual dose for this type of cancer.
I'm wondering, did your husband have the full, standard dose of radiation the second time? I'm torn between wishing he was given the full amount, or not having any at all, as is symptoms are worse now, after the radiation, then before. But this time, it wasn't our call anyway, as he is an adult and wanted to go with the radiation.
I hope you are doing well.

Wow...it's truly incredible
Wow...it's truly incredible the similarities of our situations. 26 years is a long time to live fully with no problems. Did you ever worry there could be damage from the radiation in between?

In Oct of 2009, we got to Duke for more radiation. It was focused radiation (mask and all) at 60 grays, I think. I kept lots of records early on, but then it got overwhelming. I can tell you we stayed at Duke, we lived in Georgia, while he got the six weeks of radiation. Each day, we'd see improvements to his "listing" as I called it. Hubby had imbalance issues due to the cerebellum tumor. Is your son having the same? I want you to feel free to e-mail me at KMPonder@aol.com. I will even be glad to contact you and talk about this. I will share our story in any way I can. I know this is hard for you, but I want to offer you hope and encouragement as well. Duke told us that Landy could have five years with the AAs, but when the GBM developed on his optic chiasm, we knew time would be shorter without another miracle.

I am doing ok. He died three weeks ago today, and this week's been the hardest. The reality of the loss is starting to sink in. Talking about him, though, even if it's about his cancer is healing for me. He was a brave warrior.

Kim

KMPonder

maineladydi said:

You give me hope..
My husband was diagnosed with a 3 cm stage IV GBM at Brigham and Women's on August 8th of this year. He had surgery on August 13th and I was told by the neurosurgeon that he was pleased by the results and he got all they he saw on post-surgical MRI. The oncologist wasn't as optimistic I'm afraid. She said she saw tumor on the post-surgical MRI. I don't understand how two physicians can give two completely different readings on the same MRI. He will be starting Temador chemo and radiation treatments in two weeks. We're terrified...

One month ago, life was normal. Now I'm being told that average life expectancy after treatment is 15 months. I don't know how I will be able to go on without him, I love him so much. I am so sorry for your loss. How do you do it and how will I? I keep praying for strength but I have never felt so alone in my life even though my family and friends have been wonderful. I am grateful for your story and I want you to know that. God bless.

All I know is that any of us
All I know is that any of us have but only today. This is indeed a challenging disease to beat, but many have. Educate yourself about all your options, and seek other opinions if you can. If you can, try to take one day at a time with this. Don't borrow trouble from tomorrow. I look back on the last two years and wonder how we managed with all the challenges, but we did. We survived each day together. We were grateful for that day, and I know my husband was not afraid. He didn't want to leave me, but he had no fear.

This disease is complicated, and we did often get conflicting opinions, especially after the GBM diagnosis. Doctors want to be hopeful, but they do need to realistically prepare you for what may come. Ask them all the questions you can to best prepare for what you can expect. Hubby and I did. They'll be honest. It's the best way to approach your treatment, with the knowledge you need to make the most informed decisions.

Honestly, my faith has played a major role. No, I do not like it that God called my husband home at 45. That stinks! He gave me sufficient grace to carry me through the toughest challenges and is here still holding me up. This week has been tender, but I know I will be ok. Thank you for letting me share. My husband's life was valuable, as is yours. Your love for each other will give you the strength to make it through whatever you may face. Peace and healing to you as you begin treatment. Hubby had no ill effects from Temodar. He took that with his AA tumors. He ate whatever he wanted and taught school on it and only missed one or two days while on the Temodar. He was tired. Fatigue was his biggest challenge, but he endured!!! Y'all will, too.

Unknown

KMPonder said:

Wow...it's truly incredible
Wow...it's truly incredible the similarities of our situations. 26 years is a long time to live fully with no problems. Did you ever worry there could be damage from the radiation in between?

In Oct of 2009, we got to Duke for more radiation. It was focused radiation (mask and all) at 60 grays, I think. I kept lots of records early on, but then it got overwhelming. I can tell you we stayed at Duke, we lived in Georgia, while he got the six weeks of radiation. Each day, we'd see improvements to his "listing" as I called it. Hubby had imbalance issues due to the cerebellum tumor. Is your son having the same? I want you to feel free to e-mail me at KMPonder@aol.com. I will even be glad to contact you and talk about this. I will share our story in any way I can. I know this is hard for you, but I want to offer you hope and encouragement as well. Duke told us that Landy could have five years with the AAs, but when the GBM developed on his optic chiasm, we knew time would be shorter without another miracle.

I am doing ok. He died three weeks ago today, and this week's been the hardest. The reality of the loss is starting to sink in. Talking about him, though, even if it's about his cancer is healing for me. He was a brave warrior.

Kim

Thanks for your posts.....
Kim - I just registered for this site, but have been reading the forum for a couple of months, and wanted to thank you for you calm, thoughtful, positive but realistic posts on many different topics. I am impressed with your kindness and sincerity, and I'm sure that many people have benefited from your comments.

My husband was diagnosed with a GBM in March 2011, and we have been on the roller coaster ride for 6 months now. He's doing very well overall, but we're aware that it's a very bumpy journey. Thanks for making it a little easier for all of us. Cindy

sadinholland

KMPonder said:

My husband battled AAs, just
My husband battled AAs, just over a year. After treatment at Duke, the PET in Oct '10 showed his three AA tumors were but scar tissue. We felt like we were really going to beat brain cancer, again. Three weeks after that, his vision started to deteriorate, and it took three months for the GBM on the optic chiasm to fully present itself. (It was not registering as a tumor in another PET, so a craniotomy was required to confirm their suspicions.) Please know that Duke said his tumors were caused by the radiation he had for his first tumor in 1987, so I think my husband was a rare bird. I know that when he completed treatment at Duke for the AAs, one doctor predicted five years for him. I think it's best, if possible, to not get caught up in statistics. Live each day as fully as you can. Brain cancer is so unique for everyone - location, size, symptoms.

I am really doing ok. Some days are easier than others. Sharing my husband's story is healing for me. He was a courageous man. He had great value on this earth, but his reward is now in Heaven.

Kim, I am so sorry for your loss
I am so sorry to hear about your husband. May you find peace in knowing he is in a better place and there is no sufffering or worrying there. God bless you and thank you so much for sharing your husband's journey with us.

Jeannie20

KMPonder said:

All I know is that any of us
All I know is that any of us have but only today. This is indeed a challenging disease to beat, but many have. Educate yourself about all your options, and seek other opinions if you can. If you can, try to take one day at a time with this. Don't borrow trouble from tomorrow. I look back on the last two years and wonder how we managed with all the challenges, but we did. We survived each day together. We were grateful for that day, and I know my husband was not afraid. He didn't want to leave me, but he had no fear.

This disease is complicated, and we did often get conflicting opinions, especially after the GBM diagnosis. Doctors want to be hopeful, but they do need to realistically prepare you for what may come. Ask them all the questions you can to best prepare for what you can expect. Hubby and I did. They'll be honest. It's the best way to approach your treatment, with the knowledge you need to make the most informed decisions.

Honestly, my faith has played a major role. No, I do not like it that God called my husband home at 45. That stinks! He gave me sufficient grace to carry me through the toughest challenges and is here still holding me up. This week has been tender, but I know I will be ok. Thank you for letting me share. My husband's life was valuable, as is yours. Your love for each other will give you the strength to make it through whatever you may face. Peace and healing to you as you begin treatment. Hubby had no ill effects from Temodar. He took that with his AA tumors. He ate whatever he wanted and taught school on it and only missed one or two days while on the Temodar. He was tired. Fatigue was his biggest challenge, but he endured!!! Y'all will, too.

Im sorry
Hi Kim,

I am so deeply saddened to hear about your husband’s passing; especially now in February of 2012. I haven’t visited the blog in a while but I thought about you and your husband yesterday and it broke my heart to read your post from last August.

I can’t even begin to imagine how hard it is without him. From our conversations and your descriptions it shows how brave he was and how strong of a woman he has made you. There is no doubt he is looking down from Heaven bragging about what an amazing wife you were to him.

Thank you for inspiring us all.

My boyfriend is doing well. He still does Avastin but is officially off Temodar. In November he did a brain PET scan and it came back cancer free. The tumor is still present but his doctors consider him in remission. It’s still so scary knowing the tumor is there. We have so much faith in God as you do and he will guide us through this.

Thank you again for your story and uplifting words.
I pray that your days get easier.

God bless.

KMPonder

Jeannie20 said:

Im sorry
Hi Kim,

I am so deeply saddened to hear about your husband’s passing; especially now in February of 2012. I haven’t visited the blog in a while but I thought about you and your husband yesterday and it broke my heart to read your post from last August.

I can’t even begin to imagine how hard it is without him. From our conversations and your descriptions it shows how brave he was and how strong of a woman he has made you. There is no doubt he is looking down from Heaven bragging about what an amazing wife you were to him.

Thank you for inspiring us all.

My boyfriend is doing well. He still does Avastin but is officially off Temodar. In November he did a brain PET scan and it came back cancer free. The tumor is still present but his doctors consider him in remission. It’s still so scary knowing the tumor is there. We have so much faith in God as you do and he will guide us through this.

Thank you again for your story and uplifting words.
I pray that your days get easier.

God bless.

Jeannie,
I am so glad I
Jeannie,

I am so glad I decided to revisit these boards nearly 14 months after losing Landy. Time truly heals all hurts, although I still miss that sweet, precious man! I have had a super busy year traveling (trying to stay gone as much as possible helps), and I was so blessed to meet a wonderful man on one of my vacations! We are getting along beautifully.

It's been too hard to come here, until now. I can easily remember the stress and worry being a caregiver was, and it took many months to feel that stress leave my body. Perhaps I will never quite be the same again. It was a difficult, yet important journey. I am so glad your boyfriend is doing well. I still believe there are many great success stories, and I wouldn't have changed having that hope until the end. May he wake one day very soon to a tumor that has disappeared and will defy all doctors' explanations! It can happen!!

My sister-in-law (brother's wife) was diagnosed with thyroid cancer this summer, and after surgery they realize it has spread to the lymph nodes. While this is way too soon after losing Landy, we are remaining positive that she will have a complete cure once her iodine treatment is completed next month. We aren't taking it lightly, but we know this type of cancer has a high cure rate.

I hope Landy is proud of how I've mananged (some days better than others). He had told his father he expected me to go on with my life, be happy and he fully expected I'd remarry one day. We'll see...maybe that's next year's post. He knew I wasn't good alone, but he was one-of-a-kind special. I feel a strong sense to live the last half of my life for him, too, with as much love and kindness as he gave while here.

God bless and keep you as well!

Kim