Wednesday, December 3, 2008

MRI results Dec 3, 2008

Brian had his first post operative MRI on Monday. Those results were read to us today.

First, though, I will report on Brian's overall health in the last month. On Nov. 4, his last MRI date, he could not lay down without having a series of seizure-like activities - dizziness and confusion - due to the increased spinal fluid in his ventricles. He also could not walk across a room without assistance. In addition, he was suffering from excruciating headaches. Since surgery, Brian has continued to improve in strength and neurological function. His walking became brisker and more stable than it was pre-surgery and improved gradually throughout the last month. In addition, his speech greatly improved. He tapered off the steroids so his appetite is back within healthy boundaries and his grumpiness has dissipated. He is not suffering from headaches much at all.

However, in the last week, Brian's body in general has been incredibly fatigued. He has low energy and his muscles and neck ache. His right hand since Monday has lost some function as his fingers barely move.

In talking with the doctor today, it appears the tumor has grown again. From 2.7 cm to 3.4 cm in one direction and from 3.2 cm to 3.5 cm in another direction - about a 15-20% growth. This is since the Nov. 4, MRI. The tumor is now pushing some of the healthy areas of the brain and that is most likely causing his right hand symptoms.

The overall fatigue and muscles ache symptoms are probably from one or a combination of things. From the surgery, it was discovered that Brian had low sodium in his system. His body is flushing sodium at a rate greater than it should. To alleviate this problem, he is supposed to increase sodium intake and reduce his water consumption. Both are difficult for Brian to accomplish. We have substituted Gatorade from water all together now. Low sodium can cause some muscle issues and neurological problems. In addition, around the surgery time, Brian was taking large doses of steroids. It could be that we tapered off the steroids too fast causing his body to be cortisol deficient. The steroids have to be tapered slowly in order for the glands to start producing cortisol on their own again since the steroids supplement the body with it and the glands stop producing it when one is on high doses of steroids. So, it is also suggested that Brian go back on a low dose of steroids and taper even more gradually over the next month.

As far as next steps for the tumor progression, here is where we stand. Dr. G (oncologist) is going to speak with Dr. K (surgeon) about his thoughts regarding surgery, etc. As you probably remember, Brian is pretty against any further surgical resection, so unless they think there has been some amazing change or something minor can be performed, surgery is pretty much out. That is a discussion between the two docs first, though. We are meeting with the surgeon on Dec. 9, 2008. The tumor board will discuss Brians case on Monday, Dec. 8 to determine from a radiological, surgical, radiation and oncological standpoint what they think should be prescribed. In all likelihood, the consensus will be further chemo if Brian is willing.

Brian is willing. He tells me he still has some more fight in him. He feels strong enough to handle further treatment. This is not the news we wanted to hear, but have come to be somewhat prepared for.

The next chemo will likely be VP-16 with Avastin or Carboplatin with Avastin. The VP-16 is a pill taken for 21 days at home. The Avastin is given IV every other week. The Carboplatin is given once a month IV. Both are tolerated pretty well, with the VP-16 being a bit harsher with respect to nausea. The Carboplatin mostly affects the blood counts, particularly platelets.

So, that is where we stand today. We will have a decision within the week for our treatment plan.

Our biggest prayer right now is for health for Brian and clarity in our decisions.

My biggest prayer, selfishly, is for a blessed Holiday month. I don't want anything to mar this time for my boys and for our family. There is a possibility this may be our last Christmas together and I just want it to be as perfect as it can be with lasting, good memories for our family. I pray Brian does not deteriorate and is not sick during these next several weeks in order to make travel easier, as well.

KEEP BELIEVING

34 comments:

  1. I pray that you guys will have the most magical of Christmas ever. You are in my thoughts and prayers.

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  2. Angie,

    I am praying so hard that you and your family
    have a great holiday!!!!
    Love, Mike & girls

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  3. I will be praying for all of these things.

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  4. Love you guys! Thinking about you and praying for you all.

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  5. LOVE, LOVE, LOVING...HOPING...PRAYING...and BELIEVING...ALWAYS!!!!

    What can "the girls" do to help you guys make this the most amazing Christmas ever for both you and Brian...and those precious boys? Babysitting for a special dinner out? Weekend parties at our houses? You just name the date...and you know we will make it happen!!!

    Love,
    Kris

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  6. Thanks for the update, Angie.
    I've studied a lot on adrenal fatigue, and it sounds exactly like what happened re: the abrupt tapering of the steriods. It does tend to cause bad fatigue and muscle pain. Have any of the docs suggessted a whole foods B12 vitamin (for energy) and magnesium (for muscle cramps)?

    Very simple, cheap, and natural.
    Just a thought.

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  7. anglophilefootballfanatic.comDecember 03, 2008

    Angie, you are allowed to want a nice Christmas & I know we all pray you will get it. You certainly deserve it. And, remember I'm always around if you need to vent.

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  8. I am praying for the most amazing Christmas ever for your family.

    Always praying in Ohio for your family.

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  9. I will be praying all those things for you.

    And I don't think that is a selfish prayer request by the way. After all, in the Bible it does say, "Ask and it will be given to you;seek and you will find..."

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  10. I am praying that you have a magical Christmas as a family Angie.

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  11. My mom has a glio blastoma tumor and had the surgery last October, followed by heavy radiation and chemo in the form of the Temador pills. Have your docs talked about those as an option? Also, she's been on a very low dose of steroids almost the entire time. The maze of medical stuff is hard to weed through, isn't it? Praying

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  12. I will continue to say many prayers for you and your family. That you stay strong and make the right decisions for how you need to proceed. Many loving thoughts Angie...

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  13. I have not stopped praying - I will continue to pray and keep you guys in my thoughts always!

    Take care - kellan

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  14. Thank you for the update. We will keep praying for a miracle and also for you guys to have the best Christmas possible. xoxoxo

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  15. Thoughts and prayers coming your way for the best Christmas ever. Hugs too.

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  16. If anyone deserves this, it is your family. If the prayers of the blogosphere have any say, you will have an amazing holiday season.

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  17. I love you guys. We are praying! Hard.

    Kara

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  18. Brian, Angie, Gavin and Grant

    Praying that you have a magical, blessed holiday season!

    With love, Beth Girardi

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  19. May the blessings of Christmas be with all of you.

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  20. Hi O'Neills, we just want you to know that you are in our nightly family prayers. Will & Aaron miss the boys lots and speak of them often. Try to keep warm...Love, The Holzer's

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  21. Angie -
    Our family will continue to pray for all the things you've asked for - especially for you all to be able to relax and enjoy the celebration of the birth of Jesus.
    Love,
    Marcie

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  22. I will pray for what you pray for.
    Hugs.

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  23. You are and will always be in my heart and prayers Angie and Brian.

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  24. Angie, In order to get what we want we have two things to do. Ask God to provide it and believe that it will happen. Then the third thing (and the hardest of all) is to act that our request is coming true.
    May you and your boys, both adult and youth have a blessed Christmas season and enjoy a New Years Eve that will be remembered for ever.

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  25. Hugs, Angie. I hope your December far exceeds your expectations.

    I'll be thinking of you and your family.

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  26. That last paragraph was the hardest thing to read.

    Big hugs to you Angie. xoxo

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  27. Emanuele from Alba (Italy)December 05, 2008

    Angie!!!

    Do you remember of me? I'm Emanuele from Italy Rome. I and my wife are very very close to you. I sometimes read your history when I have time. I follow you with a great hearth and great love. We pray for you. We would like to stay with you in this hour and spiritually we certainly are there with you. A big hug.



    Emanuele and Claudia from Alba (Cuneo) - Piemonte Italy
    manuplasmati@tiscali.it

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  28. This is my first time to your blog and I wanted to say that I am moved by your post and am praying for your family. At this very moment my own mother is going to the oncologist to possibly find out if she has breast cancer. It is so difficult to describe how I feel. I pray that both of our families have the happy holiday season we are hoping for.

    Best wishes,
    Anna

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  29. Angie,

    I am too am praying that you have the most magical of Christmas' this year. That you will see the blessing and peace that comes with Christmas.

    Also praying for clear direction for your doctors. And of course healing for Brian.

    Your family is in our prayers,

    Kristen

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  30. I really wish we were in the same state so I could bring you and Brian an awesome candlelight romantic dinner and take the boys somewhere fun and give you huge hugs and kisses, but I will be praying SO so so much for Brian, and your holiday.

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  31. Thank you for posting an update. I am praying you all will have an amazing Christmas. Keeping all of you in my thoughts and prayers.

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