GBM Cancer Patients- loss of memory?

Folks in this email support group- those of you currently alive with GBM ( Glioblastoma Multiforme, grade 4 tumorous malignant cancer) or those spouses who have already died of their GBM.

I have been really pondering and wondering to know if I am the only one with this problem or is it a standard symptom of all GBM patients. It is driving me crazy and I really would like to know if this is normal symptom for all GBM patients or only if your GBM is located in a different part of the brain.

As you are all probably aware, we all have different brain lobes, and each is responsible for different job functions for our human body. My cancer is in the right temporal lobe ( right side of my head) . Do all of you who also have /had GBM in this area of the brain or in other parts of the brain? How many of you have it in the Right Temporal Lobe like me and have lost their short term memory??? I'm anxious to know this!

This is what I really want to know, am I normal in my symptoms with my GBM or not, meaning are there any others of you who do not suffer from any memory loss? I have totally lost my short term memory. I cannot remember what day of the week it is, I do not know what today's date is, my memory cannot remember people's names, and i cannot remember what my schedule or appointments are for the day or the week without looking at my handy Planner calendar notebook and having White Boards plastered all over my rooms to remind me. I used to have an excellent memory for years, and loosing it now has been very difficult and depressing to me. Fortuntately, there is another part of our brain lobes for all of us that stores our long term memory to remember for example growing up as a child, going to school, getting married, raising children, etc. I am grateful that I have NOT lost my long term memory of those experiences. But the short term memory is gone ( like a computer that fizzled out) and my cancer doctor told me that unfortunately my short term will never come back to me because of the cancer being ther, and the trauma of having surgery of my tumor in that location too. I grieve that deeply.

I am very curious to grow if it is me only dealing with this in my GBM, or only because I have it in the right temporal lobe and others of you with GBM do not have any problems with short term memory because your GBM cancer is in a different location?

Please tell me your experience or what you have heard about this symptom in GBM cancer patients. Thanks much! I need some peace and working hard on "accepting the things I cannot change..."

John

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Did uyou have surgery. I understand that the brain surgery messes wiht you r memory becuae look at the brain map, ehen they get in there, the swelling and healing is going to interfere with the memory areas no matter what, no matter wchich side. I heard that youll have major short term meory problmes no matter what if you have brain surgery. My ushabd hsad the oppostie side as you and ljust like that lost all short term mermory,exactly like yours n o amount of sticky notes or papers all over his room or timeers ocud do anythin about it. Pleas talk to a speeh therapist They know all about this and way more than they doctors. Jut sign oup for an appointment. Hte are trained all a out the bran and its actual functions. Or just get on some of their websites ist eill bnprobel ansewer everything you need to know. Remember the doctors d onot actually deal with this after you go ohome. Its the rehab pecialist and soetimes the nurses or the researchers who study what actually happens. It calle lets see thers aword for what its called when whats actually happening thats observed by the cargegiver as opposed to what they see on the little meize timer clock tesys t that the spech ethepaost whil rum you through. I higly recommend it and syoulss see where you fit on the scale. Also the nerves are all ineteacting like transmitssion lines,like ac and dc, so wjen one(your rilght temporal ) is mesed up then the synegystic way they all move back and forth including the memory area doiesnt quite pan out. Remmber when you remeber something its happenin in an instant just like the switch tothe lit bulb in you r house. Same with the brain. So if powers out on onew line thats why ahtoehr neighb orhood it out. Thats the anology i learned by reading eerything icould get my hand son. DOnt gibe up and keep up the stikcy notes and have caregiver watch you like a hawk so those teeth will actually get bruashe. Giee up on what tday it is. Let her do that i guess. We gave up there and jsut worked for quality of life, ptet the dog enjoy the music and so on. Take care hope it helps and go see a sepech terhpist ieven one or tow sesions. Convice the doc you need one een if you can talk.

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My husband is having problems with short term memory, and at the same time remembering minute details of things from years ago. He's astonished at the memories that are coming up (and so am I), but don't ask him what he was talking about 10 minutes ago.

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Hi John. I believe it is very normal unfortuantely. My brother's GMB did not start in his right temoral lobe, but in the past 4 or 5 months his short term memory is pretty much gone now. It started out slowly & he now doesn't even remember if he's eaten, who has been there with him, what day it is, etc. His cancer has progressed quite rapidly though. As you know, every patient seems to experience different affects from this depending on where the tumors are & how far their disease has progressed. But yes, from what I've been told, this is very, very normal. I'm sorry & you remain in my prayers
Maria

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John, I don't have GBM but my (Oligo 3) tumor is in my right frontal lobe. My short-term memory has been poor for a long time but got much worse after my surgery. It has improved a bit over the past year but will never be good. I make notes or lists of things I need to do when I think about them. Otherwise it will be a few days before I remember the thought. It is frustrating. I have to concentrate each morning to remember the day of the week, etc. I think that's why the neuro staff stressed this in the hospital after my surgery - keep the brain working.

I hope your memory improves as mine has. We'll never be "normal" with this condition but we can make the best of it through work and effort. My best to you!

Jo

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Hi John, My husband's GBM was in the right temporal lobe. He has had only minor memory issues so far. He used to be convinced that it was a different day of the week than it really was. I guess he has had improvement, because now he is pretty good with that stuff. He is doing well at work as a computer consultant/programmer. He has lots of reminders on his computer about meetings and calls, but remembers where he is at on a project status well. I think even within the same area of the brain, there can be a lot of variation. The size of the tumor, how "fingery" the tumor was, and the amount that was able to be removed all have an impact. I'm sorry you are dealing with so much frustration with short term memory loss. I hope you have some improvement as time passes since your surgery. Yesterday was 1 year since my husband's craniotomy. We are really counting our blessings now. I'm trying to get my mind off the "elephant in the room" at least for a little while. I hope you are able to enjoy Christmas with your family.
Becky

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Thank you 7monthsout wife~ yes, I did have brain surgery to successfully remove the tumor back in February of this year 2012 and I have been having this memory loss since then. I like your examples of how the brain works- it is such a fascinating "computer" organ of the human body, isn't it??!! Funny, how as a public healthy professor for many years, I used to teach a college course called drug education & prevention and would have lectures how drugs would affect one's brain and did some discussing on brain anatomy. I would never have guessed I would end up with brain problems from brain cancer, and of course I cannot remember any of that brain anatomy lecture which would be helpful to me now!

Fortunately I am still able to speak and talk fine so far, but I sometimes notice my spelling when I am typing on the computer emails do not go over very well, but I try my darnest for perfection if at all possible. But yes, I noticed I have forgotten to brush my teeth in the mornings if I am distracting myself and then remember later in the day I had forgotten! And yes, sticky notes and white board do help me to survive each day, thankfully.

Thank you very much for sharing your late husband's condition so I can compare it. It is helpful. Blessings to you.

John

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Thanks Suzieta~ these are all helpful and reassuring emails from folks and I am grateful that all of you are taking the time to write to me as my memory loss is driving me crazy at times. I am sorry your husband is having some memory loss too. Does it bother him too or does he even notice it? I sleep in the morning and when I wake up, I have no clue what day it is today until I look at the calendar. Of course I have had to remember the night before I went to bed to cross out the day because in the morning, if I did not cross that day out the night before, I will not have a clue what day it is today!! Isn't that crazy?! Thankfully, my smart phone, when I turn it on in the office after charging it at night time, will tell me what today is, like today is Monday, Dec. 10, and when I will know what day it is.

Did your husband have brain surgery as another writer suggested, that brain surgery can be involved in traumatizing the brain memory portion? Thank you very much for writing and sharing this about your husband. I wish him well.

John

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Thanks Maria T~ yes, I understand and knew that everyone with GBM may have different symptoms, and these sharing of folks giving to me is very helpful. I was just curious to know to see if anyone else with GBM was losing their memory, but as we are all seeing here, there are different kinds of memory loss that one can go through, and I am seeing that though most have gone through brain surgery which may crate more of the memory loss, some are still suffering from the brian loss with out having had surgery, and others are still suffering what I have even though they may not have right temporal lobe problems. This is all fascinating and helpful to me, and I appreciate everyone taking the time to respond to my question.

Remember that I am a PhD doctor of public health medicine, and so I am more curious about things and making hypotheses in experiements and research, so that is why I have been very curious to know what kind of GBM patients are having the same problems as I am going through. You can also now understand that with me having been a university professor for over 25 years, I felt smart enough and had a great memory and loved my teaching of undergraduate and graduate school students. Fortunately I retired 2 years ago, as I would not be able to remember or teach my favorite subjects, even though those lectures may be on Powerpoitn slides or other methods, I would not remember any details or stories to share with my students. That is so sad that I cannot remember those fond topics, and I am glad I am retired and don't have to worry about some of those topics! But my curious nature will still be there for a while I hope and now you all understand why this memory loss is very disturbing!
:-)


John

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Thanks Jo for your encouragement and I am glad your memory is improving. My mother, bless her for her old age, is doing well, and keeps giving me tips on games and crossword puzzles and other things I should be doing to stimulate my mind and I am trying even though I never liked playing those kinds of things. I had recently asked my brain cancer doctor about my memory getting better or not, and unfortuantely he replied that it will not ever get better, so I have to continue to do my best and accept what i cannot change, but change the things I can. At least with me being a "Type A" personality, I am more of a fighter and will come up with other things to get by each day, one day at a time! I am determined and knowing what others in this support group is very helpful for me. Thank you!

John

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Wow, Becky, I am impressed with your husband's Right temporal lobe GBM and he is doing that well and is still working and is a computer programmer! I am impressed! He is very fortunate! As someone else who responded to my post, I would ask you- did your huband have surgery or not? It sounded like those of us who had cancer and tumor surgery, do worst and remain worst in their memroies because of having had surgery, so I am curious if your husband had surgery too. Regardless though, he sure sounds like he is doing great! Sorry, I just reread your note and he DID have surgery too! Wow, then he is doing great! My surgery was only 10 months ago, so maybe there will be some hope for me in a few more months of recovery.

I am traveling to Michigan (from Minnesota where I live) and my older son will fly with me for our family gathering for the holidays and my younger son is getting married after the holidays so I will be doing more flying and traveling which I used to be very good at but now I find it stressful to remember flight arrangements, gate to be at, etc. Even though I will have my older son with me, I still like to know where I am going and be in charge of my own destination. I bought a cool Brookstone "Boogie Board"- a paperless LCD writing tablet which I take with me on travels to write details and reminders on it that helps me to remember important details I need to know- my flight #, gate flying out of, and other reminders. I used it for the first time this summer when I bought it, and I love having it with me to keep my sanity and reduce my anxiety I may experience!

Thanks for your encouragement and about your husband's situation and I am glad to hear he is doing so well! Happy Holidays.

John

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Oh John I certainly do understand your curiosity. This must be extremely frustrating for you & I'm sorry. You remain in my prayers.

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John,
Don't be so hard on yourself. You are a very educated man - but one who is no longer working at your daily job, so of course its hard to keep up with what day it is. I don't have a brain tumor (my husband does) but I am menopausal......so enough said !! :o) I'm hard pressed to remember anything these days. I have notes and lists everywhere, but the problem is that I never remember to take my lists with me when I go shopping. So see, you don't have to have a brain tumor to be forgetful.....you just have to be menopausal. And please tell me you have not lost your sense of humor because if we can't laugh at ourselves.......you get what I'm saying. There are days when the only thing that keeps us going is laughter.

My husband's brain tumor was on his right parietal lobe. The only thing that has really affected him - that we can tell at this point - is some of his right peripheral vision. He still drives his vehicle but he sold his Harley as he didn't feel it safe any longer to be out in traffic. And Lord knows he loved his Harley. (But that's another converation altogether). So I sold mine as well because there was no way I would be able to drive around a 6' 4", 260 lb man on the back of mine !! (He wouldn't let that happen even if he were a smaller man).

He's always had a memory like an elephant but since his surgery he will tell you that he can't remember what day it is half the time either. But then again, he is no longer working. I do know when I'm at work in the day that he spends time working crossword puzzles, sudoku puzzles, and the like to keep his mind going. And I'm sure he watches his share of Jerry Springer and HBO. But then hey, as long as he keeps up with the housework, cleaning and laundry, I don't care how much TV he watches. :o) (teasing)

He, too, is a real stickler for spelling, and so am I, but then again, I believe its our generation (he's 60 and I'm 57) and back in the day we had to spell correctly, and punctuate properly, or else!! It also makes both of us crazy to see the way the younger generation spells on FB or when texting, to say nothing about punctuation. So I get what you're saying about that.

But John, with your level of education, and experience, and if you still have a desire, brain tumor or no brain tumor, it sure sounds like you have a lot to offer students. So what if you can't remember what you used to. That's what the computer is for. Pull out those PowerPoint slides (if you can remember where they are) and go to town. I'm sure you have enough contacts from your past that could help you do something you feel is a good use of your time now that you are retired. That would probably be the best medicine for you.....staying busy and helping people. But don't forget to relax. Oh, and laugh, see, I almost forgot ! You gotta laugh !! :o)

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Thanks BensWife 1974~ great humor which is important for all cancer victims I have read! We were worried about my visual problems too and the doctor made me wait unitl I was done with radiation treatment to get my eyes checked and new eye glasses this summer which helped but I noticed my eyes are still bad, especially with my bivocals for the smaller prints. And maybe it is our generation about the picky spelling, as I am 65 and a perfectionist and noticed how terrible my thinking and spelling is ( or typing too fast while thinking in my brain) that things come out wrong! I am glad to hear some of his problems with his GBM right temporal lobe are what I am going through ,so I do not feel alone! But he is doing better with the brain homework puzzles stuff which I am trying to do, but never got into that stuff, and my mother is buggling me to do those kinds of things. I am still able to do doctoral dissertation draft readings for my PhD students and feel I am keeping my brain stimulated and that makes me happy to do some productive work, but I have quit teaching my classes which i do miss and get bored at times. But I also do not need the brain stress with the teaching, so it is probably a good thing I am not teaching right now. I need to heal my brain and reduce the stress levels.

Thanks so much for your note and the best to your husband and you too!

john

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John, although not as educated as you, I'm another type A personality and am completely bored with not being able to work. I exchanged my job for my health, making my new job trying to improve myself through diet (including vitamins), exercise and brain games. I agree that stress also is not good for our condition. I think your mother is correct on brain games. When I left the hospital (after my craniotomy), I listed to the left when I walked, so I started walking more and concentrated hard on walking straight. That was my first job but I was successful after a lot of work.

Some side affects from brain cancer we have to accept. My memory loss is annoying, frustrating and sometimes maddening but I've learned to get around it. My husband pushes me (ex-marine that he is) and this gives me strength to accept what I cannot change but to try to change anyway. We go to movies but I forget all about them within a week. But we went on a 3 week vacation through the southwest and I can remember every moment of every day in chronological order. The difference there is that each day I went over the previous day from dawn to dusk with my husband. We would discuss it like it was a favorite book and I told my brain to remember this.

I feel your pain, though, and wish you the best on your journey in this neuro world we're in. Take care.

Jo

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Hi John,
My friend (with GBM 4, gone through surgery, radiation and chemo treatments) has short term memory loss symptoms similar to yours. He has trouble with names, numbers and dates also. Even though his tumor was in a different location -- left front. His long term memory and navigation capability are fine. He used to have excellent memory and is fluent in two foreign languages.
There is a theory about 'chemo brain'. I wonder if this has more to do with the chemo treatments -- we can only find that out if we get enough cases to compare with.

Take care,
Patrick

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Thanks Jo and I think that for some of us "Type A" personality, it is helping us to really survive through these experiences! My youngest son works fulltime for brain injured patients in a group home and is amazed that I have the same memory problems and issues as those who were injured in car accidents, etc TBI patients and he claims that I am doing much better than most of his patients he works with because of my type A personality and my educational background to fight this disease and memory loss much more than the TBI patients. Made me feel better, but sad that they have to suffer so much through their own issues too.

I am just relieved that I am not imagining my brain loss and that I am not alone when you kind folks write and share similiar experiences. I need to be more peaceful about my own situations and not be so hard on myself, and realize that i am doing the best I can under my circumstances. I can always joke and use the expression that I am having a "senior moment" and that is why I forgot something! haha! :-)
John

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Thanks Patrick G for yuor kind thoughts and about yuor friend. I can imagine how your friend would lose his foreign language skills. I ahve forgotten some of my, but for me, I cannot remember terminaology I used to always used when talking about medical issues in my medical and health classes and I can't remember what they are anymore, and I can imagine these also happening with foreign languages one must have known well and no longer can. I am sure it is frustrating to him too!

I have also heard from many people who have normal memory but are required to take chemo and they end up having brief periods of forgetfullness during their week of chemo, and I noticed that sometimes happens to me even more with my already brain memory loss how the chemo I take every several weeks that I have more memory loss. Strange how that happens! I will pay the price for memory loss if the chemo is working to kill off my cancer, it is worth it! Thanks for your note.

John

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John,

My mom has glioblastoma as well. She has recently completely lost all short term memory as well. Her tumor is left frontal lobe-- but it has strongly affected her motor skills in her right hand. She has severe expressive aphasia--- and the memory loss and confusion has been worsening. She sleeps 20 hours a day, and at least 2 people have to be home with her usually. We realized the memory issues when she started wanting to take multiple doses of her medication, even when we had them organized in boxes. She actually had a severe seizure yesterday... We had to take her to the ER and now she's starting on a new seizure med. as of today she had absolutely no recollection of the seizure. She has no issues with her long term memory, but it seems she has completely lost the ability to make new memories. Mom had 6 weeks of radiation and temodar-- and is starting her 3rd round of Maintenance temodar this week.

Keeping you in my thoughts , Jenn

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My husband did not have any surgery for different reasons and that was totally his choice. One of the major risks we were told was memory loss and possibly being paralyzed. However, his tumor is on the left side and on the memory part of his brain. This all started in Nov 2010 and he was given less than a year to survive. However, he has passed the two year anniversary thank GOD.
He is still on chemo every other Friday..........Avastin and Carboplatan after six weeks of radiation and Tremador in the beginning of the diagnosis of GBM. His long term memory is perfect and his short term gets worse and worse each day. He has a double whammy as "chemo brain" and the fact his tumor is on around the memory part of his brain already does create many challenges for us both...............we have been told over and over that the CHEMO in itself creates major memory issues so it probably plays a big part in your memory loss if you are on chemo too. I didn't catch what treatment you are currently taking but my first reaction to your post was in fact the "chemo brain" issue and it's "normal" for memory issues. I hope that helps in some small way. Blessings to you as GBM is a monster for us all who are dealing with all the side effects from it and the treatments to try and "control" it.

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Dear JenniferChristine07~ thank you for sharing your story of your mother and I am sorry she is suffering again from seizures and her memory loss. Certainly scarey when these things do occur, and make me more understanding that i should not be in a hurry to remove my anti-seizure meds that i still take daily twice a day! I hope she does better and bless both of you! Thanks for writing and sharing!
JOhn

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