Help please - GBM getting close to 11 months

michral
michral Member Posts: 14
edited January 2013 in Brain Cancer #1

Hi everyone,

I have been on and off this site.

My husband was diagnosed with GBM in March 2012.  We have had our fair amount of ups and downs, MRIs showing improvement and then spread.  We live in Massachusetts and I brought my husband to Brigham and Women's, as well as Dana Farber - having seen one of the most knowledgeable doctors in the Boston area, who is from Duke University.  There has been some forgetfulness, etc.  There has been some increasing forgetfulness, but it's funny how the brain is able to find new paths.  We lost my father-in-law unexpectedly 2 days after Christmas.  We had been on Temodar as most GBM patients start with.  Initially, it was helping and there was shrinkage.  My husband has 3 tumors, all inoperable.  Our last trip to Dana Farber, he was hospitalized at BWH and had an MRI around 9/25/2012, which showed spread to the brain stem, left side of brain (original tumors on right), "fingers", and some suspicious cells in his CSF - this was a shock to us because he had been doing so well.  We then had another MRI on 10/30/2012, this showed no cancer at brain stem, the new left tumors had shrunk and so had the original 3 tumors - Yahoo.  

My husband had his follow up MRI on 12/31/2012.  Dana Farber has switched him to CEENU because back on the September MRI, it showed that the Temodar had stopped working.  This new MRI (12/31) shows wide growth, the right and left tumors were larger, there is cancer on the brain stem, pons, medulla.  This was the day before my FILs wake.  Again, another shock.  These are the ups and downs experienced by most GBM patients.  I'm writing today because our local oncologist and physician at Dana Farber are suggested trying 1 more course of CEENU and doing another MRI in 3 weeks to see if this therapeutic agent is working.  I've have noticed that since his last course of CEENU, last Wednesday, as well as the full week prior, he has been complaining of "sinus" headaches (which he used to get when he was healthy)."  As of this new course, he has pretty much stayed in bed and has been sleeping a tremendous amount.  If I ask him a question, it takes him a while to respond.  I'm getting very concerned and wanted to check with those of you, who have experienced this terrible disease and this journey and did you also experience this.  I have voiced my concerns to friends and our oncologist and they said it could be a number of things.  I guess I'll probably just have to wait for the MRI.  I came on hoping that some of you could share with me your experience and what worked/didn't work for you or your spouse or child?  I find myself crying daily and do pray to find the strenght to make it through this dreaded disease.  Thank goodness I have God.  Thanks in advance for any information you may have.  Have a blessed day!

M.

Comments

  • jcwinnie
    jcwinnie Member Posts: 9
    #2
    And, what are you doing for You?

    Excuse me for replying in my choice of fonts. I did like your post, how it appeared, if not what it said. 

    I am the one with GBM (Stage IV) since November 2011. They put Stage IV when they diagnose; the most severe rating right from the start. I appreciate your telling about his treatment. I will know in March if I am recurrent, i.e., it's been coming back.

    My principal caregiver is my spouse. She went this morning to her individual therapist. She had dropped back to every 2 weeks when my MRIs were clean / clear. That "good time" may be over; we will see in March. My question to you is what are you doing for yourself as he approaches the end?

     

  • Raani01
    Raani01 Member Posts: 70
    #3
    jcwinnie said:

    And, what are you doing for You?

    Excuse me for replying in my choice of fonts. I did like your post, how it appeared, if not what it said. 

    I am the one with GBM (Stage IV) since November 2011. They put Stage IV when they diagnose; the most severe rating right from the start. I appreciate your telling about his treatment. I will know in March if I am recurrent, i.e., it's been coming back.

    My principal caregiver is my spouse. She went this morning to her individual therapist. She had dropped back to every 2 weeks when my MRIs were clean / clear. That "good time" may be over; we will see in March. My question to you is what are you doing for yourself as he approaches the end?

     

    Uncertainty- Prayers to find peace

    My husband had Oligo astrocytoma 3 (at the end one doctor said it changed into GBM,but it didn’t matter what at that time because  tumor was not responding to chemo!). The symptoms like staying in bed and sleeping more are signs of tumor growth , as we were told. I will give you an idea of what happened to my husband to help you learn how this decease came after our family;

    1997-my husband was diagnosed with Oligo 2. Took temodar for 12 cycles along with radiation and the tumor went in to remission- he was fine – followed with MRI every year

    2003-tumor came back –again treated with temodar 12 cycles and went into remission

    2008- tumor started to acting up again , temodar again for 12 cycles and continued on a maintenance dose until the beginning of 2011 .

    2011 April.- temodar failed .At first, doctors at Mayo said no hope. Then they  suggested CCNU to try. Tumor responded to CCNU for 5 months then the tumor came back.

    January 23 ,2012-Tried Avastin as last resort

    February 9,2012- unexpected bleed in the brain, my husband lost cognitiveness, He just responded to our questions with no emotions. He continuously gets seizures ,he started to decline.

    April1,2012- Came from an ER visit on hospice, bedridden, he would give one word answers to our questions, the only comfort was that he could eat ok.

    June 23rd ,2012- another seizure, he started to sleep more  and more

    July 15,2012 – Sleeping all the time and stopped eating

    July18, 2012 – Went to the Lord while his siblings, kids, and I were with him praying.

     

    I am weeping in my heart. My love and prayers to you to find peace in this most difficult ime

     

  • michral
    michral Member Posts: 14
    #4
    jcwinnie said:

    And, what are you doing for You?

    Excuse me for replying in my choice of fonts. I did like your post, how it appeared, if not what it said. 

    I am the one with GBM (Stage IV) since November 2011. They put Stage IV when they diagnose; the most severe rating right from the start. I appreciate your telling about his treatment. I will know in March if I am recurrent, i.e., it's been coming back.

    My principal caregiver is my spouse. She went this morning to her individual therapist. She had dropped back to every 2 weeks when my MRIs were clean / clear. That "good time" may be over; we will see in March. My question to you is what are you doing for yourself as he approaches the end?

     

    GBM

    Hi JC,

    I've just recently started seeing a psychologist and also was referred to a psychiatrist for medications (recommended by family and friends and also my husband's oncologist).  Since my husband's diagnosis, I am so down all of the time.  I have no interest in doing anything, but I have to be strong and care for our 3 children, a son, 16, another son 14, and a daughter 12.  Up until Christmas, he was fine, but I've seen a decline over the past few weeks.  It sounds like you've been fortunate to still be up, around, and able - God bless you.  I will add you to my prayers that there is no new growth/tumor on your March MRI.  There is no magic pill for my feelings nor my husband's cancer, it is just a nightmare.  May you continue with your good health, and as I stated above, I will keep you in my prayers.

    Thank you very much for responding,

    Michelle 

  • michral
    michral Member Posts: 14
    #5
    Raani01 said:

    Uncertainty- Prayers to find peace

    My husband had Oligo astrocytoma 3 (at the end one doctor said it changed into GBM,but it didn’t matter what at that time because  tumor was not responding to chemo!). The symptoms like staying in bed and sleeping more are signs of tumor growth , as we were told. I will give you an idea of what happened to my husband to help you learn how this decease came after our family;

    1997-my husband was diagnosed with Oligo 2. Took temodar for 12 cycles along with radiation and the tumor went in to remission- he was fine – followed with MRI every year

    2003-tumor came back –again treated with temodar 12 cycles and went into remission

    2008- tumor started to acting up again , temodar again for 12 cycles and continued on a maintenance dose until the beginning of 2011 .

    2011 April.- temodar failed .At first, doctors at Mayo said no hope. Then they  suggested CCNU to try. Tumor responded to CCNU for 5 months then the tumor came back.

    January 23 ,2012-Tried Avastin as last resort

    February 9,2012- unexpected bleed in the brain, my husband lost cognitiveness, He just responded to our questions with no emotions. He continuously gets seizures ,he started to decline.

    April1,2012- Came from an ER visit on hospice, bedridden, he would give one word answers to our questions, the only comfort was that he could eat ok.

    June 23rd ,2012- another seizure, he started to sleep more  and more

    July 15,2012 – Sleeping all the time and stopped eating

    July18, 2012 – Went to the Lord while his siblings, kids, and I were with him praying.

     

    I am weeping in my heart. My love and prayers to you to find peace in this most difficult ime

     

    GBM

    Hi Raini,

     

    I'm so sorry about your husband's passing and I'm sure it was painful to document his journey for me (as I am sure you are still in mourning), but it was so appreciated to actually hear from another person touched by this dreaded disease.  My heart goes out to you and your family.  Our journey has been similar in many ways, except my husband's time frame has been a lot shorter.  In my first post, I put CEENU, but it is actualy CCNU, which he is receiving every 6 weeks and he also is receiving Avastin every 3 weeks.  From my earlier post, I am going to counseling for coping and I am on an anti-depressant medication and also anti-anxiety medications (I was having panic attacks reguarly before going to the psychiatrist for medications to help).  My sense at this point is that these new symptoms may in fact be due to tumor growth.  The latter part of the week before last, they had increased his steroid from 2 mg to 8 mg.  He showed no signs of improvement, so I thought it was inflammation.  To add insult to injury, the Friday before last (being in bed all day), he woke up all congested in his chest and his head.  I again called the oncologist on call and he prescribed a Z-Pak.  At that point, I truly thought it was a bug/virus, as my 14-year-old son had it and missed several days of school because of it.  I, too, ended up with it.  At that point, I felt relief thinking it was an infection.  

    Since that point, however, he has been sleeping more and more, up to 20-22 hours a day and as I mentioned has a hard time answering/responding to questions.  He is hardly eating, but I am pushing the fluids.  When he does get up, his balance is off kilter, but he is still managing.  I called our oncologist yesterday with these new symptoms to see if we should bring him to the ER.  He advised increasing his steroid again from 8 mg to 16 mg, which I did.  Additionally, he ordered a stat MRI, which will be performed tomorrow at 7:45 am.  I'm really scared at this point and almost afraid to get these results.  We have been together almost 30 years and he is my soul mate/best friend and a wonderful husband and father.  I know the predicted outcome of GBM, but I can honestly say, I'll NEVER be ready for the end.  Thank you again for sharing your journey and also thank you for your love and prayers - I do feel praying helps a great deal and I have a lot of friends praying for him/us.  May God bless you and again, I am so sorry about your husband.  I appreciate that you responded to my post.

    Prayers to you too,

    Michelle

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