update on my Mom's GBM and her current condition

Roxanne Sparks

Hi Everyone,
Just to update you on my Mom...She finished her radation 2 weeks ago, but has not been able to take chemo/Temodar for 5 weeks now. Her blood count is too low and her oncologist fears damage to her bone marrow if he resumes the treatment. She is only awake 4/5 hours a day if that. We go back in 3 weeks for a third MRI. She had one 3 weeks ago and the tumor was "stabilized" for whatever that's worth. I'm on my 5th week of leave from work to take care of my Mom and I feel soooo fortunate to be able to do this. It's trying at times, but I wouldn't change things for anything. She's declining each week, and I know this is part of it, but it's so hard to see. God bless you all and thank God for this forum!!
Take care,
Roxanne

Kris

Dear Roxanne,

Thanks for your news - it's good news that your Mom's tumor growth seemed to be stabilized according to the last MRI.

I am so happy to hear you can be with her continuously. When my Mom was in the same situation, I could be there with her only during the week-ends as we did not live in the same country. But I did went each week-end during the 4 months she had from the date of diagnosis, and now this is what gives me some reassurance and souvenirs of those painful but beautiful moments. Cherish every second you spend with her.

It's not that bad for your Mom that she sleeps a lot, at least she is not conscious of pain and suffering meanwhile sleeping. Does she receive some morphine-type drugs?

You're both in my heart,

Kris

Roxanne Sparks

Thanks for the encouraging words Kris. She says she's in no pain. We've been told that because of where the tumor is located, she doesn't experience pain. She is on no pain meds. Did your Mother have any treatments or just palliative care. Her quality of life after the treatments is not good. Sometimes I wish she had just gone on with her life and had a better quality than taking treatments. She has no strength on her left side, but that is because of where the tumor is located as well. We're headed to my home for a few days and I'm very excited about spending some time with my husband. He's such a huge help with my Mom and she adores him.
God Bless!
Roxanne

Kris

Dear Roxanne,

Oh how releaving it is to hear that your Mom has no pain!

My Mom had a 5.5 cm tumor in the time of diagnosis, and because of the size and because of the location she had very strong headaches. She and also us, the family, opted for palliative care only, as the surgery could not have removed more than 70% of the tumor and in these cases recurrence occurs very fast.

She did not want to uptake the load of radio or chemo, she wanted to have some calm time with her family around. I tell you honestly, I was very happy for her decision. Every GBM is different, and every patient is different. All the personal decisions and choices should be respected.

My Mom was on steroids to reduce swelling in the brain, and also on pain killers, first she had fentanyl patches in increasing doses, then she's been put on morphine injections when she got into hospital.

With this palliative care she had 2.5 beautiful late summer-early autumn months with very good quality of life, with the family around. Then she had 1.5 months in hospital until she passed away on 23 November 06.

Do not have any regret in the decision you've made when opted for treatment. At that time, you thought that that was the best choice. You've tried it, you gave the chance to a better outcome, you've done everything you could.
Enjoy your days with her in your home, that will be lovely!

I'm thinking of you,
Kris

Roxanne Sparks

Kris,
I have a question for you...My Mom thinks she is going to be "cured" of this tumor. Did your Mom realize that she was "terminal"? (I hate that word!) I don't have the heart to tell her the severity of this tumor. Her radiation therapist told her back in November, that patients with this type of tumor who don't seek treatment, usually live 3 months. Patients with radiation and chemo can live a year, but she hasn't retained that information. I'm not sure what to do??
Thanks,
Roxanne

Kris

Dear Roxanne,

Sorry for my late reply. Well, I had the same impression like you: I thought that my Mom was not realizing how much her condition was serious - actually, we did not detail to her the nature and outcome of GBM.

When she first heard the diagnosis of GBM, she was told that it was a malignant brain tumor. She was also told that her case was inoperable. But she always thought that the steroids she took would either stop tumor growth and keep the tumor "silent" in the stage it was (we never told her that the size of her tumor was more than 5 cms diameter at the time of diagnosis - this is quite shocking to hear and to visualize a tumor of that huge size in your brain). I could not tell her the severity of her condition, and I also never countered when she told me with lots of hope in her eyes "I may have at least 1-2 years to live".
I felt that she was longing for hearing a reply like "oh, no Mom, you have much more time than that..."

But I never replied or reacted when she mentioned "I have 1-2 years to live".

Until her last few days, I thought that she never realized that she was terminal. But when she started to slip into a semi-coma/coma, her eyes changed, the way she looked at me changed, and I understood from her eyes at a specific moment that she clearly knew all along the journey that she had very few time left. She understood what my silence meant when I left her without reaction to the "1-2 years to live".

She faced the battle with all her pride and dignity. I am very proud of her.

I guess when they talk about "being cured" it's their hope, it's what they want to hear, it's natural instinct to live, it's normal human reaction. Nobody accept easily that she may die in a short time, but I think they all know somewhere deep inside what was going to happen.

Support your Mom in every way you can, let things flow in their natural way, follow your heart and you'll know if she needs to be told anything else than that you love her.

You're in my prayers.

Kris

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