Speech problems from GBM treatment

My sister was diagnosed with GBM on 5/4/12 and is being treated with temodar, radiation, and avast in. This week will be her last week of treatments. Today is her last dose of decadron. She is having trouble with her speech. She seems to be thinking okay but cannot get the right words out to express her thoughts. Could this be a side effect of the radiation?
She is eating a macrobiotic diet and does yoga everyday, so is doing everything we know to do. Any suggestions?
Thanks for any help you can give.

Report post

18 replies. Join the discussion

Where was the tumor? My husband's was in the left frontal lobe, and after surgery, he developed aphasia (word finding difficulties). The radiation does cause swelling, which could be affecting her speech.

Report post

Her tumor was also in the left frontal lobe. How do you deal with aphasia ? Thanks for your help.

Report post

it could be any number of things... my treatment has included all of those and I have similar problems... forgetting words or simply how to pronounce them... its not too bad for me, but I do better typing these days than speaking.

Report post

Are you suffering from any memory loss, although you might not be aware of this, but your loved ones will be. That's what my dad is suffering and his tumor is on the right side, which does cause this

Report post

Hi Miele,
My son had a very large malignant tumor in his left frontal lobe and we were warned that he might have speech problems post surgery. After a discussion with his medical team, we immediately put my son on a curcumin supplement. He reports greater speed in being able to access words since his surgery/since starting the curcumin - despite the affront to the speech control center in his brain. Curcumin is being investigated by researchers for post-stroke treatment in order to deal with speech and other related problems. May be worth researching its use and having a discussion with the doctors.
All the best,
Jana

Report post

Hi Jana,

Thanks for the advice. I'll mention it to my sister. How much does your son take? Also does therapy help? We're at a bit of a loss as it is frustrating for her.
Thanks again,
Miele

Report post

Hi Miele,
My son takes 5 grams of curcumin a day with flaxseed oil and black pepper (the oil and pipperin is to increase the bioavailability). He weighs ~190lbs (86 kilos). That dosage was set by his oncologist as the upper limit. Lower limit mentioned was 2 grams a day.

However, it is important to talk to the doctor before taking curcumin. There are no reports suggesting that it interfers with any medications, but it's better to be safe than sorry, plus its use can disqualify a patient from certain clinical trials, because the sponsors of the trials will not be able to determine if their product or the curcumin was the element that worked.

Therapy will also help her rebuild circuitry in her brain. That process takes a little while. After my encephalitis, I needed about 18 months, but I was not taking curcumin at the time.

If your sister and her doctor decide to try curcumin, I suggest getting a good, reputable brand from a health store. You might find the best prices for curcumin on Amazon; they offer subscriptions at reduced rates because so many people are now taking curcumin.

All the best,
Jana

Report post

Hi Miele...so sad to learn about your sister's GBM diagnosis. My husband was diagnosed back in March 2012, and he, too, has the 'deficit' of aphasia. He also can no longer formulate sentences. The thoughts and words are clearly in his head, but he cannot write them out anymore. He has found some software for his computer that allows him to write down his thoughts (they would not mean anything to the naked eye)...then the program takes his words and formulates sentences for him (great for emailing). Another technological tool is on his smart phone. He can talk into his phone and it writes out his text mail. As far as his aphasia, I just try to be very patient when he is talking. His speech therapist at MDA in Houston, told us that we need to let him try and get the word out...it forces his brain to work and that is good therapy. Like she said, "If you don't use it...you will lose it."

In case you might be interested, there is another excellent online support group specifically for caregivers of folks with brain tumors. It is: http://www.braintrust.org/btcaregivers.htm You join the group and once approved...you start receiving emails from other people who are a caregiver for a brain tumor patient. I find their emails very enlightening. These are people who have "been there, done that" in the world of brain tumors. I have asked only one question, and got some very helpful feedback. Just when I feel I must be the only person in the world thinking whatever I am thinking, I get an email from someone in this support group that validates my thoughts and helps to take away a little bit of my guilt. I have gotten great comfort reading other caregivers experiences. I consider these people to be the "experts" because they have actually lived it...they speak from personal experience.

Hope this helps...Lindy

Report post

Hello,

My sister also has a problem with her right hand and eye hand cooridination so typing is out. I'm not sure about her left hand,maybe she can learn to use that. She's in good spirits though so that's a plus. I appreciate all the advice.

Thanks,

Miele

Report post

Hi Lindy,

Thanks for your kind reply and advice. I don't understand how she got this terrible disease. She was very healthy, in good shape, ate an organic diet. Is there a site where people try to figure out what they have in common with other brain tumor patients? Just wondering.
Thanks,

Miele

Report post

Hello Miele,

I'm so sorry to hear of your sister's GBM. I know your pain. My husband also has a large frontal lobe GBM. Although he does not have speech difficulties, he certainly has all the other frontal lobe issues of personality, memory, and executive functioning, as well as the progressive side effects from the large area of radiation. Expressive aphasia is not uncommon with frontal lobe brain tumors. The best way to improve speech is through a speech therapist or occupational therapist. I would ask the oncologist for a referral. If you recall, Senator Giffords after her tragic brain injury underwent extensive speech and occupational therapy and has recovered speech beyond anyone's expectations.

As for curcumin, it probably will not hurt, but there is absolutely no solid scientific data that it will improve speech nor rebuild any brain tissue. There is a new curcumin derivative molecule being investigated, which has hope for brain benefit but it is not commercially available. Currently available curcumin does not pass through the blood brain barrier so there is no way it will benefit as described in previous postings. It is not a cure all as has been suggested. There is a phenomenon called the placebo effect, where 22% of people believe they either have negative side effects from a product, or the opposite where they believe they have relief of symptoms when taking a sugar pill. Personally, I believe we should put our hope in our Lord first, then proven medical therapies, followed by accepting the potential risk vs unknown gain with taking supplements rather than relying on them as the answer for everything.

I had hoped this site would be used for support of each other rather than the ongoing, exaggerated and unsubstantiated medical advice offered by lay people. I too wish we knew why this terrible disease randomly strikes the young, old, healthy and unhealthy. For now, we just have to hope that a cure will be found while our loved ones can benefit, support each other with kindness and compassion, enjoy each and every day with our loved ones, and avoid chasing false hopes. We are all too vulnerable and have too little time to believe every potentially false claim of benefit posted here. I agree with Lindy's post about the brain trust site for caregivers. We need support, not commercials.

Report post

Hi Miele,

I wish I could give you some information regarding "why" people get this lethal cancer...but I cannot. From what I've read, it's an equal opportunity cancer.

My husband recently participated in a study at MDA that is directed at learning the "why" question. So, I know research is being done in that arena. Maybe they will someday tell us why our loved ones got this monster. Cancer does not run in my husband's family at all.

Like your sister, my husband was the picture of health for a 61 year old man. He played golf just about everyday, and almost never caught any type of virus or cold floating around. Pure healthy! Then...this monster invited itself in and lives in my sweet husband's beautiful brain. I thought I knew what it meant when someone said "Life isn't fair." I did not. My reality now is, "Life isn't fair...but I just didn't know how unfair it really could get!

I have lots of friends who pray for my husband to be totally cured...to pray for a miracle. I am grateful for their prayers, but there is NO cure for this cancer. It almost offends me and my husband when someone tells us that. My husband's GBM has changed the way I feel about almost everything. I caution them to be careful what they pray for. Longevity is not necessarily a good thing for a GBM patient who has multiple deficits. So, I kindly tell them that our prayers for my husband look more like praying that he lives without pain...that he has more quality days than hard days...that he continues to be a functioning adult until the end days (bladder control, bowel control, no blindness, etc.)...that he remembers who I am to the bitter end. I have learned so much from my husband's experience, and continue to learn everyday. I now understand fully that death isn't the worst thing that can happen to a human being...GBM is far worse than death, in my opinion. I want my husband to be able to die with dignity. With GBM, you never know if your loved one is going to get to do that. My husband was such a brilliant and successful man. He will always be that man to me, but somedays I get to "talk to the tumor." I hate those days.

I know your journey is just beginning with your sister. I will keep you and your sister in my heart, and my wish is that she will have many quality days ahead, surrounded by loving friends and family, and the fewest amount of 'deficits' possible. My wish for you is that you have the strength, patience, and good health to be there for your sweet sister.

Hugs...Lindy

Hugs...Lindy

Report post

Lindy is right, they just don't know why certain people develop brain tumors. My husband also participated in a research study looking for factors that are common to brain tumor patients. He was also very healthy and active when diagnosed. He was running 4 miles a day, eating a low-fat, high protein diet, not taking any medications, and rarely sick. Never had a seizure until the day he was diagnosed, at age 45, in perfect health. He completed the research study at Mayo, but I believe it is a national study and many locations are participating.
Becky

Report post

Golfwife,
I regret that this site continues to be used by those who believe we all have 10 years to wait for the research results and as a medium to be cruel to those who have their own personal battles with this disease.

Report post

I had surgery to remove a GBM tumor, left temporal lobe, 2-26-09. I have had radiation--5 courses while still inpatient--and stereotactic on several occasions. I've been on Thalomid, Temodar and Keppra since March 2009, and started Avastin a year or so ago. I have the "jitters" all over my body, more noticeable in my lower jaw, voice and hands; neuropathy in LEs and UEs, imbalance, and a loss for words. I have some difficulty with speaking and have to use a bit of exertion.
I'm not surprised that I got cancer, but it was a real surprise that it was in the brain. I mean I haven't abused my brain or even used it that much! ;-)

Report post

Miele,

I'm sorry to read about your sister's troubles. She is at the beginning of intensive treatment, and there will likely be many side effects, and set backs. Radiation and temodar can do all sorts of things, but they can also fade away. Don't let her become too frustrated, or give up. It's still really early. Things don't necessarily just get worse. They get better too. My wife has a GBM, first surgery in 2003, second in 2011, and has had two rounds of radiation (the new tech is amazing and so much better than '03). All totaled, she is in her 30th month of Temodar (now with Avastin). After her first surgery, my wife didn't speak for months, but fully recovered. And I mean, completely. After her second surgery, she could not use her right side at all. Today, eight months later, she can walk with a cane and go to the kids swim meets. Six months ago, I would not have believed she would be where she is. The point is, it's early, and the treatment is intense. Sure, the future is uncertain, but you and she do not know what it holds, and today's limitations and difficulties can improve, or disappear entirely. Both of you rest, eat well, and be patient. There is still much to enjoy.

Report post

Dear Snowcialist,
Thank you for posting. Those of us in the GBM community need to hear from people like you and your wife. She was first diagnosed in 2003 and is still fighting and living her life!! All I hear about are the dismal statistics of 14 month average survival time and almost no 5 year survivors. Your wife has beaten the odds and we all need good news. Such a success story is very encouraging. I know she is still in the fight. I just pray that my husband will still be here and still have a significant quality of life with our family for so many years to come.
Thanks,
Becky

Report post

Dear Snowcialist,

Thanks for the encouraging words, we needed them. I read your post to my sister, her husband and their 17 year old and they are feeling much more hopeful. She has been very fatigued and seems to be dragging herself around. I have been trying to get her to walk but it is so hot and she is clearly quite tired. I'm never sure when to push her and when to leave her alone. I guess we just do the best we can.

Also I wish I had spent a bit more time working on my posting name. I got a kick out of yours and so did my sister.

Thanks again,

Gloria Miele

Report post

This discussion is closed to replies. We close all discussions after 90 days.

If there's something you'd like to discuss, click below to start a new discussion.

Things you can do

Support ABTA

Together with your help, the American Brain Tumor Association will fund more research and reach more people, with the shared goal of improving, extending and ultimately saving lives. With your gift, those coping with a brain tumor diagnosis will know -- more than ever -- that they are not alone.

Donate to the American Brain Tumor Association

Discussion topics

More from ABTA

Community leaders