My husband has inoperable Glioblastoma Grade IV

JuleMichigan
JuleMichigan Member Posts: 2
in Brain Cancer #1
We found out December 10, 2010 about my husband tumors. It it has been almost 10 months of ups and downs. My husband is 48 this month. We found out because my husband was having trouble sleeping. We went to the doctor thinking he was under stress at work. They told us he has several tumors.
We married Jan. 3, 2011. He went through very aggressive treatment for 6 weeks. They used radiation and Temadar together. After that they used Temadar, steroids and Avastin together every two weeks and then every month. The tumors did shrink. We had a scare from blood clots forming in the lungs and he had to take a shot twice a day at first to one a day now of blood thinner in his stomach. This month, September 2011, is the first month he will get a break from Avastin. We also won't receive another MRI until the end of October. He has been weaned off the steroids. They are still keeping an eye on a spot in the back of his brain but the doc. said we will back off on some treatment and "see what happens". The cancer has effected his sleep, balance, speech, memory, etc.... of course he can no longer work or drive or most of the things he did before (go to gym, ride bikes, hike, fish, hunt, etc.) and he has had a few falls. For now his treatment continues to work for him. Things seemed so terrible during treatment but he is doing a lot better now. He still has balance, speech and memory issues but it has much improved. We get out and do more. Some days he has a lot of energy and he mows the lawn with his riding mower. I even drove us up north this last spring for his beloved mushroom hunting. He sat in his wheelchair and told me where to find the mushrooms. He walks now sometimes with the help of a cane.
He can dress himself again.
I just joined this discussion group to feel that my husband and I are not alone and to vent I guess. This is the hardest thing for anyone to ever go through. I mean for the patient as well as the caregiver. I wouldn't wish it on my worst enemy. I know things are going well for now with my husband but since the rug has been pulled out from under us it seems the rest of our lives is falling apart also. I am wondering if anyone out there has a spouse that can't be left alone and what they do for work to bring money into the home. Before this my husband worked, I was laid off and pursuing an education. Now we have had to get him on disability and cash out our 401K's to live on and pay bills. I am afraid we will file for bankruptcy very soon. My worries have maxed out my own stress levels and some days I just walk around crying. I don't want to loose my husband. He is the best thing to ever happen to me. I don't know what may happen. I do not get much help from family and his lives on the other side of the country. I am up for any suggestions. I need a job just to pay for his Cobra payments. I am afraid of his care once we have to get on Medicaide. Is anyone under similar circumstance?
All I know here is that we try to keep it positive as best as we can and know that everything is in God's hands.

Comments

  • micgrace
    micgrace Member Posts: 131
    #2
    I am so sorry. Unfortunately
    I am so sorry. Unfortunately those of us with partners have to go through this with GBM. It really is a massive curse this disease. Just trying to live with it and the sheer randomness of it takes every ounce of energy. As to a job? No, not a chance. No way could anyone afford to be apart in the closing months of someones life. The grieving also starts with the diagnosis as we all know its invariably terminal. In the end I let all my wifes debts go with her and have restarted my life again. Not that I don't miss her every minute of every day. Yes, there is life after GBM.
  • Beckymarie
    Beckymarie Member Posts: 357
    #3
    micgrace said:

    I am so sorry. Unfortunately
    I am so sorry. Unfortunately those of us with partners have to go through this with GBM. It really is a massive curse this disease. Just trying to live with it and the sheer randomness of it takes every ounce of energy. As to a job? No, not a chance. No way could anyone afford to be apart in the closing months of someones life. The grieving also starts with the diagnosis as we all know its invariably terminal. In the end I let all my wifes debts go with her and have restarted my life again. Not that I don't miss her every minute of every day. Yes, there is life after GBM.

    I too am sorry for what you
    I too am sorry for what you are going through. My husband was diagnosed in 2009 with an inoperable GBM. He lived 15 months. I look back on that time and I wonder how we (my children and I) ever made it through. The grief, anxiety, fear were overwhelming. I was able to work part-time up until hospice came in. A friend setup a website for us called Lotsa Helping Hands. Family, friends, neighbors...people I did not even know joined our "community". I could put a task up such as having meals supplied, having yard work done, etc. on our site and a member of our community could sign up for it. Look into this, have a friend help you. People want to help but often don't know what to do. You will be very surprised. Please be strong, I know how vey hard this is for you and your family.
  • I_Promise
    I_Promise Member Posts: 218 Member
    #4
    Beckymarie said:

    I too am sorry for what you
    I too am sorry for what you are going through. My husband was diagnosed in 2009 with an inoperable GBM. He lived 15 months. I look back on that time and I wonder how we (my children and I) ever made it through. The grief, anxiety, fear were overwhelming. I was able to work part-time up until hospice came in. A friend setup a website for us called Lotsa Helping Hands. Family, friends, neighbors...people I did not even know joined our "community". I could put a task up such as having meals supplied, having yard work done, etc. on our site and a member of our community could sign up for it. Look into this, have a friend help you. People want to help but often don't know what to do. You will be very surprised. Please be strong, I know how vey hard this is for you and your family.

    Free Care
    Hi,

    Try the National cancer Institute... It is free and it is top notch. It is a brain cancer center with the latest technology. They pay for everything (even plane flights and hotel stays). It is our taxes that pay for it.

    Julia
  • Nell37
    Nell37 Member Posts: 3
    #5
    Alternative therapies
    Hi
    I am not going to say I am saddened. It is really encouraging to see so many people on the forum, fighting with the disease, either themselves or through a loved one. I find a lot of strength reading all the posts here. It gives me comfort that we are not alone in this fight. Recently, I came across this therapy that uses sequentially programmed magnetic fields to treat cancer. This treatment is a non surgical process and is not painful. This treatment has yielded good results in GBM patients. This treatment might help in your husband's case. I hope you both find more comfort.
  • RLR
    RLR Member Posts: 36
    #6
    inoperable GBM 4
    DON'T GIVE UP HOPE!!! God has a plan for each and everyone of us. I am sorry to hear about another GBM case. I too have GBM4 I was diagnosed on 12-15-2008/at the age of 53 I was told it was inoperable by by several different doctors and hospitals, in toledo Ohio and Ann Arbor Michigan. Then I became so ill with pain my wife took me back to the hospital in Toledo on 1-11-2009. By the grace of God we meet a new doctor ( Dr.Michael Healy) who said he would do the surgery.On 1-13-2009 I had surgery to remove a baseball size tumor. I had 6 weeks of radiation and chemo and then just Temadar. There have been plenty of ups and downs but I am still here after 2 1/2 years. I have not worked since being diagnosed in Dec.08 but I was able to retire from work after 29 years. I am able to do a lot of things I did before.Some of my worst problems are fatigue, memory loss and confidence to do task that I could do before.Try to keep active with whatever you can and don't give up HOPE!!! I wish the best for you.
  • Girl2010
    Girl2010 Member Posts: 26
    #7
    My brother has a stage 3/4
    My brother has a stage 3/4 tumor. My mother takes care of him. I completely agree it is just as stressful on the caregiver... where in Michigan are you being treated? We are in Michigan as well.
  • connsteele
    connsteele Member Posts: 232
    #8
    Girl2010 said:

    My brother has a stage 3/4
    My brother has a stage 3/4 tumor. My mother takes care of him. I completely agree it is just as stressful on the caregiver... where in Michigan are you being treated? We are in Michigan as well.

    Caregiver fatigue
    I too am a mom of a AA3/GBM son and sympathize/empathize with your mom. He is 34 and was diagnosed in April 2011. He had to give up living independently...he's single, no kids. Had to move him out of his apartment in Virginia and back home with us in Ohio. The days can be so hard. Mainly having to see everyday how much his life has changed and how much he has lost due to this disease...his job, his friends in VA, his apartment, and the ability to do the things he liked to do (as in cycling and billiards.)

    We live in west central Ohio (Dayton area) Where in Michigan are you? I think there needs to be a support group for caregivers of brain tumor patients. Do you know of any?
  • Girl2010
    Girl2010 Member Posts: 26
    #9
    connsteele said:

    Caregiver fatigue
    I too am a mom of a AA3/GBM son and sympathize/empathize with your mom. He is 34 and was diagnosed in April 2011. He had to give up living independently...he's single, no kids. Had to move him out of his apartment in Virginia and back home with us in Ohio. The days can be so hard. Mainly having to see everyday how much his life has changed and how much he has lost due to this disease...his job, his friends in VA, his apartment, and the ability to do the things he liked to do (as in cycling and billiards.)

    We live in west central Ohio (Dayton area) Where in Michigan are you? I think there needs to be a support group for caregivers of brain tumor patients. Do you know of any?

    My brother is 20 and has
    My brother is 20 and has AA3....has also given up living independantly. Cannot be left alone...my parents are his caregivers and it is so hard on them. These tumors are so nasty...
  • connsteele
    connsteele Member Posts: 232
    #10
    Girl2010 said:

    My brother is 20 and has
    My brother is 20 and has AA3....has also given up living independantly. Cannot be left alone...my parents are his caregivers and it is so hard on them. These tumors are so nasty...

    Losing independence
    How has your brother handled having to give up his independence? This has been one of the hardest thing for our son, and us, to deal with (after the terrible diagnosis, that is). Our son is taking anti-depressants, and it has helped some. Thinking I may do the same.
  • Girl2010
    Girl2010 Member Posts: 26
    #11
    connsteele said:

    Losing independence
    How has your brother handled having to give up his independence? This has been one of the hardest thing for our son, and us, to deal with (after the terrible diagnosis, that is). Our son is taking anti-depressants, and it has helped some. Thinking I may do the same.

    He too is on anti
    He too is on anti depressants but he has just learned to accept the help from everyone. He cannot do anything alone. Not even get out of a chair so...I can imagine what your going through...I see what it is doing to my parents... this is a horrible horrible disease. How is your son doing now?
  • connsteele
    connsteele Member Posts: 232
    #12
    Girl2010 said:

    He too is on anti
    He too is on anti depressants but he has just learned to accept the help from everyone. He cannot do anything alone. Not even get out of a chair so...I can imagine what your going through...I see what it is doing to my parents... this is a horrible horrible disease. How is your son doing now?

    Things are stable for now
    Has your brother finished his radiation? During radiation and for a several weeks after, our son was pretty helpless too. The radiation was really hard. Couldn't be left alone either, and needed help with everything...dressing, bathroom, etc. Since we are now almost three months out from finishing radiation, he has improved. Uses a walker, which gives him enough stability in the house to go to the bathroom and dress himself on his own. But for longer outings, he uses a wheelchair. He also has started to take an interest in his XBox, something he hasn't done since before radiation over 4 months ago. He can't play at the level he did, but we are encouraged that at least he's doing something besides sitting in the recliner, just sleeping or staring off into space. Hopefully, things will start to improve for your brother too. As our son's NeuroOnc says, "it takes a while for the dust of radiation to clear away." How true. If you or your mother would like to contact me, my email is connsteele@msn.com. It might help to communicate or talk to someone else going through the same thing.
  • hunter49
    hunter49 Member Posts: 247 Member
    #13
    connsteele said:

    Things are stable for now
    Has your brother finished his radiation? During radiation and for a several weeks after, our son was pretty helpless too. The radiation was really hard. Couldn't be left alone either, and needed help with everything...dressing, bathroom, etc. Since we are now almost three months out from finishing radiation, he has improved. Uses a walker, which gives him enough stability in the house to go to the bathroom and dress himself on his own. But for longer outings, he uses a wheelchair. He also has started to take an interest in his XBox, something he hasn't done since before radiation over 4 months ago. He can't play at the level he did, but we are encouraged that at least he's doing something besides sitting in the recliner, just sleeping or staring off into space. Hopefully, things will start to improve for your brother too. As our son's NeuroOnc says, "it takes a while for the dust of radiation to clear away." How true. If you or your mother would like to contact me, my email is connsteele@msn.com. It might help to communicate or talk to someone else going through the same thing.

    It is not easy but he knows
    It is not easy but he knows your there and feels your love, that is the best treatment he can get. My dad had a GBM as well and it was hard on all of us. He was a pillar of strength and was an inspirtation to me just as your husband is to you. God bless you and he.
  • JuleMichigan
    JuleMichigan Member Posts: 2
    #14
    Girl2010 said:

    My brother has a stage 3/4
    My brother has a stage 3/4 tumor. My mother takes care of him. I completely agree it is just as stressful on the caregiver... where in Michigan are you being treated? We are in Michigan as well.

    Hello
    We are being treated in Ann Arbor at the University of Michigan Hospital. We are considering a trip to Cleveland if the insurance gives the okay. We travel about 45 min. to Ann Arbor.
  • MJLSK
    MJLSK Member Posts: 1
    #15
    Nell37 said:

    Alternative therapies
    Hi
    I am not going to say I am saddened. It is really encouraging to see so many people on the forum, fighting with the disease, either themselves or through a loved one. I find a lot of strength reading all the posts here. It gives me comfort that we are not alone in this fight. Recently, I came across this therapy that uses sequentially programmed magnetic fields to treat cancer. This treatment is a non surgical process and is not painful. This treatment has yielded good results in GBM patients. This treatment might help in your husband's case. I hope you both find more comfort.

    SPMF
    Hi,

    Do you mean SPMF therapy in India?

    Can you please say whether this has worked for you?
  • sidney_1998
    sidney_1998 Member Posts: 1
    #16
    Nell37 said:

    Alternative therapies
    Hi
    I am not going to say I am saddened. It is really encouraging to see so many people on the forum, fighting with the disease, either themselves or through a loved one. I find a lot of strength reading all the posts here. It gives me comfort that we are not alone in this fight. Recently, I came across this therapy that uses sequentially programmed magnetic fields to treat cancer. This treatment is a non surgical process and is not painful. This treatment has yielded good results in GBM patients. This treatment might help in your husband's case. I hope you both find more comfort.

    Alternative therapies

    Hi,

    I have just joined this forum and saw your post. My brother-in-law has been diagnosed with GBM IV and has gone thru all the standard procedures - surgery, radiation, chemo. He seems to have actually deteriorated after the treatments, and we are not sure how to proceed - if at all. We are seriously considering the SPMF treatment, but do not have sufficient data on this. Do you know if this has actually worked? Would really appreciate any feedback on this technique. Thanks.

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