Memory Issues with GBM

Hello everyone. I don't usually post on here, but wanted to get some feedback. My wife was diagnosed with a GBM on 11/16/10. Since then, she has had surgery, radiation, temodar, Carboplatin, more radiation, and Ceenu. After the last radiation treatment, she has started having short-term memory issues. Unfortuantely, these are getting worse by the day. Also, she has what I call "Phantom Appointments" where she thinks she has an appointment or someone is coming over. But, this is not the case.

Has anyone else experience these "Phantom Appointments" and how did you handle it. I have already hidden the car keys so she doesn't think she needs to be somewhere and leave.

Thanks for all the support.

Marc

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I don't understand why you would have to hide the car keys unless she is unable or unsafe to drive. After all, you are effectively locking her in the house and she can't go anywhere. What is the harm if she shows up atg a doctor's office and finds out that she does not have an appointment? Just a bit of embarassment.

I have a brain tumor and some memory issues as well. If my husband hid the car keys from me I would be very angry and hurt. I want to enjoy life while I can, and do not want my freedom to be restricted.

Anita

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The short term memory loss is very common in brain tumor patients and the cause could be the site of the tumor or the result of radiation. My husband's memory is not what it use to be so we have a calendar on our refrigerator where we right down all of our appointments and upcoming events to remind both of us. We look at the calendar every day so we are aware of what's coming up next. I retired when my husband was diagnosed with a GBM so I'm also his caretaker and I go to almost all of his doctor appointments and take a notebook with me and record what was said in the doctor's office. We also try to joke about it so its not as upsetting when he makes mistakes or can't remember something. For the most part he is doing well and we consider ourselves a team. There are also therapy places that can help with cognitive abilities and provide strategies that help people remember. Your doctor should be able to assist you in finding help in that area.

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I can say I feel for you!!! My husband was diagnosed in August 2010 and has also had radiation, chemo and now avastin. I think it is awfully difficult to adjust to losses as you are experiencing. I hope you are having honest discussions with your doctor and your wife. I think this is important. I also keep a calendar for my husband and go over it every day but her problems may be beyond that.
I also recommend that you find (through your doctor) a therapist you could work with on techniques for those with memory problems. Do look for this because you can find it!! It won't take away the loss but it might help ease the difficulty.
Cheers
N

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I already keep a calendar with everything on it. But, she still keeps thinking there are other appointments.

Anita, I hid the car keys for her safety. It is not to restrict her freedom. She is getting very confused, and I fear that she will leave and get lost. She already could not find the car one time. Her and I have had discussions and she agrees that she shouldn't drive. With the keys hidden, there is no way she can get "confused" and leave.

I also have all her medication hidden so she doesn't forget that she took it and take it again.

Luckily, I have a great support system and friends are coming into the house every day at lunch to take her out to lunch and get her out of the house.


N - thank you for the ideas. It is actually ironic, because she is a speech therapist and worked with stroke victims on memory issues. It's just harder to apply these things to your own life.

Thank you everyone for the support. Let's keep holding on.

Marc

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My apologies. I had to go 6 months without driving, because of seizure history, and I found it very difficult and depressing. Although I have memory problems, I am not "confused", or at least not enough for it to be a safety issue. Thankfully, I'm also able to manage my own meds. I have a grade 3 anaplastic astrocytoma which has given me some motor issues, and I think the chemo and radiation some memory issues. I drive now, but not on the freeway.

Good luck.

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My husband has GBM and I so agree with hope4u all the way......as that is how we manage most days too. The doctors told me the day my husband was diagnosed for sure that he could never drive again.
Memory loss, seizures etc. and all the possible side effects from chemo and radiation and all the prescriptions...........he gave it up easily. I hate to drive but oh well..........and we try and make the most of each day.....good or bad and our doctors stess that MEMORY issues are going to be on the front burner and to NOT stress over them and let them go.........and my husband often calls things something that is not right but close and I am getting so good I almost figure it out right away..........they thought he had a stroke in Nov 2010 and he was not officially diagnosed until March 2011....it would have been sooner but the crummy GP we had at the time wouldn't listen to me about his "strange" behaviors in January 2011 and I finally went over his head in March to the neurologist who cared for him in November........the next day he was diagnosed with GBM.........not that two months would have changed the outcome but by March the tumor was very large.....maybe two months sooner it wouldn't have been so big yet...........anyway my husband had a biopsy but not a debulking.......but he had Tremador, radiation for six weeks, is now on Avastin and Carboplatin until April 2012 so far and as of yesterday they weaned him off steroids to give his body a rest. He or I wouldn't think of him driving with his condition...................but my husband is extremely easy going and so far doesn't give anybody any guff about what we have to do for his care.......I was warned that he might have personality changes but so far nothing like that................his memory is and has always been an issue but we handle it and we also have a strong family and friend support group..........plus great doctor support too..........we pray everyday for a miracle and a cure for all of you who have loved ones with GBM or you yourself have it.
It's a dreadful thing and we feel so helpless in fighting it sometimes but I strongle agree that nobody with GBM should be even thinking about driving for their own sake as well as others on the road. You just never know things are going to go really haywire. Oh and my husband asks two or three times a day what is on the "agenda" for that day and the next day and often calls today..........Thursday a Friday as he does get confused easily.......I just calmly say.........Honey you are a day ahead.......it's only Thursday and always always try and make light of his memory issues so as to not frustrate him more than he is frustrated at times now. The easier I can make it for him..........the easier it is for me :)

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Hi Marc,
My son has (had) a Grade III anaplastic astrocytoma and many years ago I had encephalitis which seriously impacted my temporal lobes and, therefore, my short term memory. Once out of the hospital and out of the woods, I was left dazed, confused and couldn't remember what I did 5 minutes earlier. I basically really had my bell rung. However, I noticed that as time went on, my memory slowly improved. I found out that the brain is marvelous in its ability to rebuild circuitry. It does take a while, but what I found that helps is this:

exercise for the body (just even walking or whatever the person is up to safely); this gets the brain the oxygen it needs to repair, plus cancer hates oxygen (that's why they are experimenting with treating GBMs with hyperbaric oxygen chambers).

exercise for the brain...it's important to get the brain working. I used to spend hours putting picture puzzles together...try anything to nudge the brain into rebuilding its circuitry.

daily multi-vitamins are an absolute must; the brain needs many of the vitamins to function properly

no alcohol...at least until "back to normal". I found I could throw myself back into my encephalitic fog with just a few sips

no meat...it seems as though eating foods that are more easily digested (like lean fish/chicken and fruits and veggies) sharpen cognitive abilities. I could make myself foggy for a day or 2 by eating a nice steak.

Have a look at supplements. I didn't notice a difference for me but some people swear by fish oil. That may be why some people consider fish as "brain food". What I felt worked for me was a little extra (200ius) of Vitamin E in addition to my OTC daily multi-vitamin. I would clear anything and everything with the oncologist, but in sensible doses, I haven't found any reluctance by doctors to agree to these simple, but vital additives.

It goes without saying, but no sugary foods and drinks. I also avoided diet sodas and artificial sweeteners because they made me feel funny.

Bottomline is that the memory thing is a reality that you'll probably have to deal with for a while, but there are things you can and should do to lessen its extent and it is possible to substantially overcome the confusion and fogginess in time. Please keep reaching out and keep fighting. You are obviously a good man and good husband. There are victories to be had. My son and I are both living proof.

May God continue to give you daily strength,
Jana

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Thank you for all the suggestions. We're just taking everything day by day.

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Let me say first that my prayers are with you and your wife. My husband had no short term memory at all after his surgery and diagnosis. He didn't get to have the treatments so I don't know how that might would have affected him. He would also get very upset when he thought someone was being condescending to him. He did not like to see the speech therapists coming. Just be as patient as you can as you care for her. Also take a breather for yourself every now and then.

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My husband also has grade 3 astrocytoma, but has minimal symptoms. When did you begin your seizures. He jerks in his sleep but has not has noticeable symptoms while awake. I know that not driving will be very difficult for him. His loss of independence scares me too.

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Thanks for your information on how you handle things. I hope to be able to copy your techniques.

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Hi Everyone,
My brother was diagnosed back in 94 with oligodendroglioma, surgery, chemo, radiation, than again 11 years later, diagnosed with anaplastic astrocytoma. Now 7 years later, just found out now he may be stage 4 as he was having aura seizures for two years and never told anyone. We have a family accounting business and my sister noticed the changes in his ability prior to this and he finally admitted it.
Now Chemo and Avastin and steroids and really struggling with speech and memory, writing and comprehension and making mistakes. We were blessed to have this take so long to grow back when they originally said five years. The family is very patient with him at work and helping him with everthing, checking any work he does etc. But it is getting more and more difficult and clients are starting to notice. He is total denial and insists he can do the work, fighting with assistant who is just trying to help. Financially now it is a struggle as he brings in his own clients and income and now my sister footing the bill for the help. We just found out he has no disability insurance. How do you take away someone's livelyhood when they are down? I know of course he is angry, especially on higher steroids and he is defensive. How do we tell him he should not be working now? I have a feeling the next MRI next week will tell.

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I'm sure your brother is fighting for normalcy in addition to all of the side effects of chemo and steroids, not to mention the location of the tumor that can also affect his personality and behavior and the responsibility to make a living. Not sure if you already know but your brother, diagnosed with brain cancer either with a grade 3 or 4, can qualify for Social Security Disability. Once on SSD within two years he will also qualify for Medicare. Hope this helps.

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Yes I know but it's not going to be near what he is earning and his expenses. They do very well now but will have to start downsizing. He and his wife have a vacation home so they hopefully will realize that they have to sell it. Other than that they not big spenders. My sister in law works part time and my brother is the primary breadwinner. They have two teenage sons, one junior and one off to college next year. Hopefully with just one mortgage, they can get by. The problem is my brother won't admit he can't work yet.
Thanks!

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I read your profile and see your husband has been on Avistan and stable since? That's great! We are hoping the Avastin and chemo work and for a while these cognitive/speech problems get better.

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Hi, my husband was diagnosed with a gmb around Sept 201. For years we have been to doctors/er visits trying to figure out what was going on with him. The last er doctor released him with the comment..."well if it hasn't killed you yet, it probably won't." I was furious, we fired her immediately. It is now Jan 2012 we have finished radiation and chemo, we just started evastin in addition to an anti siezure Med. I am beginning to seriously question the doctors recommended treatments. My husband is so weak, he cannot tolerate this regime of meds. I wonder is this the end for us, where do we go from here. I will not let my husband endure what the doctors deem medically necessary. I am going to do whatever I need to, to make him healthy, alert, etc. For the rest of is life, no matter what the doctors recommend. I have told my husband that I will do whatever he wants, for as long as he wants, to make him comfortable. It kills me to see him suffer, my husband is a great man, I am so lucky to have him in my life. I don't know why I am sharing this with you, except for the fact, I am hoping for a miracle. It is so hard to hope when all the doctors and articles tell you that the is only one out come.

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Hi billcgh,
Reading your posting was very hard. It is clear you and your husband are really going through a bad time. I would encourage you very much to read my earlier posting back to Marc about diet and exercise. It is not a joke or an exaggeration that these factors are critical to recovery, staving off cancer and bouncing back into as healthy a condition as possible. Consider Lance Armstrong who had 2 brain lesions (for which he had to have surgery), a handful of cancerous tumors in his lungs and highly lethal testicular cancer - and was given a 3% chance of survival when he first came in to his oncologist's office. He beat the disease through diet and exercise and of course all the heavy artillery that the doctors threw at him. However, the doctors can only do so much, the rest is up to the patient (supported by their family).

If you want to do some research on some of what I recommended in that previous posting, here's more....

Turmeric causes cancer cells to digest themselves by triggering lethal cell death signals. For a reputable, medical description of the positive benefits of turmeric please see: http://lpi.oregonstate.edu/infocenter/phytochemicals/curcumin/ (There are other sites that are easier to read, but this one is authoritative.)

Arginine causes retardation of tumor growth. The actions of L-arginine which are related to its use in cancer treatment are:
• Inhibits cellular replication of tumors
• Assists in the release of growth hormones
• Enhances immune response
• Improves rate of wound healing (in cases of surgical intervention)
For more details on arginine, please see: http://www.positivedesigns.com/cardio/Arginine%20&%20Cancerous%20Tumors(1). pdf

Never, ever, ever give up.
-Jana

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Two comments: 1) I hid the keys from my wife. A painful turning point but the right thing to do. 2) Avastin does nothing for gbms and can have terrible side effects. From the Avastin website: "Currently, no data have shown whether or not Avastin improves disease-related symptoms or survival in people previously treated for GBM." If your oncologist recommends Avastin for gbm, demand to know the clinical evidence that supports this recomendation. This is not a time to be throwing spaghetti against the gbm wall to see what sticks.

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I agree with Ed's comment on Avastin. While there may be some benefit in prolonging angiogenesis at the tumor site Avastin has not yet been proven to cure GBM. I also urge caution in recommending treatments that have not been proven in randomized controlled clinical trials. While there MAY be some benefit in turmeric and arginine, neither of these have been studied to prove any benefit in brain tumors, or any other cancers for that matter. The articles referenced suggest phase 1 trial for curcumin in gastrointestinal cancers, which usually means it has been evaluated in animals, but has not been studied to determine benefit in humans. I do believe that nutrition plays a large role in how one feels while undergoing treatment for cancer, but is not the determining factor for survival. Take a look at Dr. Servan-Schreiber's story in his Anticancer book and subsequent book "Not the last goodbye" about his recurrent brain tumor. I also believe that there are promising medications on the horizon, but right now there is nothing proven to fully cure GBM. I had hoped that this site would be used for encouragement, for dialogue about how the patients and caregivers are coping, for information on clinical trials so that we are not grasping at straws but being truly informed. I'm not trying to rain on anyone's parade, nor have anyone lose hope as there is always hope. I just would like to see factual information. (remember when we thought it was a good thing to take hormone replacement therapy in menopause to prevent heart disease, but once it was studied in a RCT it was found that HRT caused heart disease?)
Hope I'm not offending anyone here, I just really need to feel support when I read the comments. I need to know what to expect, what to look out for, where the best care is, and hear success stories and most of all your faith and hope!

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Golfwife, I can't speak for anyone else but you are most certainly not offending me. It is important to debunk the myths around gbms with regard to diet (good for energy and attitude, does NOTHING for reducing tumors), drugs (Avastin does not work on gbms - they even say so) and herbs (no reliable clinical evidence for tumeric, for example), and concentrate on proven therapies. We must take the emotion out of what should a rationallly-based decision-making process. "No evidence - no good."

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