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Husband diagnosed with GBM grade 4

agariepy
Posts: 3
Joined: Nov 2009

My husband is battling a GBM grade 4 brain tumor. His is located near the brain stem and is approximately the size of a golf ball. He was experiencing headaches and then the pain moved into his neck and upper back. Aaron was diagnosed on November 10th 2009. The tumor was operable yet the surgeon was only able to remove less then half because the tumor is in a high risk area. The only issues we have been seeing is some short term memory loss- Aaron tends to repeat himself. But besides that, he is able to function and carry out a pretty normal life and schedule. Aaron has been recovering well post operation and is waiting to start radiation and chemo at the end of December. He is only 26 years old and we have been married for only 10 months when he was diagnosed. We are so hopeful and praying that God will continue to heal him 100 percent and eliminate the tumor completely. Can people tell me what they have been experiencing in regards to the treatments and their effects (energy levels, able to work, nausea, etc). Thanks
- Ali

RED09
Posts: 2
Joined: Nov 2009

I DONT HAVE WHAT YOUR HUSBAND HAS BUT I TO WAS TOLD I HAD A TYPE OF BRAIN TUMOR. I WENT THROUGH 36 RADIATION TREATMENTS FROM NOV08-JAN 09 ONE EVERYDAY BUT NOT WEEKENDS I HAD NO PROBLEMS WITH THE RADIATION MYSELF AND I HAVE BEEN ON SEV DIFF TYPES OF CHEMO .. I KNOW HE WILL BE OK ...I HAD SURGERY LAST YEAR WHEN IT WAS FOUND.. IT WAS ABOUT 3" THE DR WAS NOT ABLE TO GET ALL OF IT .. BUT I WILL STIL GO ON SMILING PLEASE JUST BE THERE FOR HIM..

infoneeded
Posts: 24
Joined: Jul 2009

My husband was diagnosed in May 09. He had a very successful craniotomy and did wonderful with radiation and temodar. He had fatigue towards the end and only had hair loss where the incision was. He then went on avastin and terceva. That had more side effects. He experienced constipation, diarhea and he wanted to sleep all day and night. Fortunately everything had something to counter act the side effect. Nov 16th he had his second crainiotomy. The first one removed his left front lobe. This second one we weren't sure if he would lose his vision in his left eye or not. The surgery was much more intense then the first one. They had to take out his orbit and eye brow bone (and then reconstuct) to scrape the cells off as well as the dura and removal of two tumors. He is starting to have speech problems and memory issues. Through it all he has been able to work. It is probably what keeps him going. His mood goes up and down and I cherish the happy moments. I wish you luck and will keep you in our prayers. Good Luck.

help4hubby
Posts: 1
Joined: Dec 2009

Wow reading your story made me feel like I had written it about my husband but with the same name and age as our son.My husband was diagnosed Dec 4th 2008,they immediatly admitted him and started him on steroids and Keppra(anti seizure) even though he never had one,they did surgery on the 8th and were able to remove 80% playing on the side of caution.Dec 11th they decided to go in and remove more which was 10%. He was released from the hospital Dec.13th.It was amazing how well he recovered from the surgerys. He started radiation Feb.16th with chemo pill (temodar)he had radiation treatment 5 days a week for 6 weeks. He did pretty good. He did loose his hair but it did come back which surprised the Dr. He said it probably wouldn't with the amount of radiation he would be receiving. They had to stop the Temodar pretty early in the game because it messed up his blood counts so bad he ended up having to have platelett and blood transfusions. He ended up with blood clotts in both legs and had to have the blood thinner lovenox for awhile .He went through being able to eat to not being able to eat because of no taste buds back to eating but everything tasted metalic so we used plastic utenils and that really helped. He slept ALOT . Never got sick on his stomach. He got very thin and weak for a long time. Around June-July he started to get stronger. Started feeling pretty good and started a new job in Oct. but that only lasted 2weeks when we found out the tumor was growing again and in a place they didn't want to operate on because it would have caused too much neuroligical damage so they started him on Avastin. He gets the treatments once every other week. He was doing pretty good up until Dec. 4th. One year to the day. It has been downhill ever since. He is back to sleeping all the time. He is so weak there are times he can't even walk.It is getting very difficult to care for him on my own because he has started falling alot. He has a walker now but has alot of difficulty pulling himself up because of his weakness. I tell him to get mad,anger gives him power and he usually gets up soon after LOL.He does experience short term memory loss and can no longer be left alone. I have been with my husband William for 30 yrs and married to him for 28. It is so so hard to sit here everyday and watch my husband fade away. I try so hard to keep him and myself postive since it is too early to tell if the Avastin will help. We know we are nearing the time span he was given which was 13-16 months but I am hopeing and praying the treatments will kick in and take over.
I hope this has helped prepair you in any way.
Take Care
Darci

vickie whitener
Posts: 6
Joined: Nov 2009

Hi Darci! We were diagnosed on 2/18/09. We did all of the treament available, Temodar, radiation, double chemo. We went to Duke on 8/10 and had gliadel wafers inserted after they debulked another tumor. My husband went down hill immediately after the wafers. He couldn't continue with the clinical trial with Avastin and CPT-11 because of the devastating effects of the wafers. We are currently NOT doing any further treatment because his oncologist did not see any improvement with the Temodar since the tumor returned in only a few weeks after we completed the rounds. He developed a huge brain infection that turned into sepsis. He leaked spinal fluid because of a problem with the surgery from Duke. He went on IV antibiotics in a critical care rehab for 3 1/2 weeks. Developed an allergic reaction to the massive antibiotics and his kidney function dropped to 25-30%. Stopped the antibiotics on 10/9 and he developed a blood clot the size of a tennis ball in his right lung and several in his left. We have had gall bladder surgery ( they think due to the chemo-not sure), in and out of the hospital from Aug until the end of October. In early November he began sleeping almost constantly and then went into episodes of severe delirium and did not sleep for more than 1 hour per night for 2 1/2 weeks. He experienced what the doctors described as waking nightmares. He was sure that I was trying to poison him or kill him. he fought me, fought the bedclothes, did not sleep much at all. It was horrible!! We called in hospice and they were awesome! The doctors tried all kinds of anti-anxiety medication and nothing worked until they gave him 100mg of seroquel at night. After 3 days he began to calm down and sleep. From that point on he began to improve until now he is "almost" back to the way he was after the initial surgery. He still needs a cane to walk but was using a wheelchair. He is taking only 2mg of decadron daily and anti-seizure medication.

Where is this going? I don't know. We are scheduled for an MRI on 1/11/10 and a follow-up for the results on 1/14. We also were told in November that he most likely would not survive through Thanksgiving. Here were in 2010, almost 7 weeks from Thanksgiving and enjoying every hour we have. No one can tell you when or how this devil of a beast will act. It is horrible and it is mean!!! Just keep praying and enjoying all the time you have. God bless you and your husband!!!

gamecock
Posts: 1
Joined: Feb 2010

Hi,

My 43 year old best friend was diagnosed Christmas Eve 2009 with stage 4 GBM. The surgeon was able to remove 95% of the tumor...Yeah! She started radiation treatment five weeks ago along with Temador, Decadron, and Keppra. She also is taking Avastin infusion every other week. She was doing great while I was there for week two and three of her radiation. However, she has been going downhill ever since my visit sleeping a ton and her speech has gotten slurred. Her mom started keeping count of her sleep....up to 18 hours in one 24 hour period. Her doctor performed an MRI last week and adjusted some of her medicines. There is conflicting info on the MRI results which we're trying to wade through. However, is it normal to sleep such long hours towards the end of radiation???? I'm a breast cancer survivor but had chemo and radiation seperately about two months apart. I was pretty tired towards the end of radiation but never slept that much; and I do realize that every cancer is different. My girlfriend has different friends plus her mom as caregivers. She has never been married and we're coming in from different parts of the country to help out. My worry is that some of these friends are not giving the medication/radiation a chance and may try to talk her out of finishing her treatments. I know they love her very much but they haven't personally been through the lows of the rock bottom part of cancer treatments nor have they been around anyone that has really gone through cancer treatments. How many hours did your husband sleep when he was sleeping a bunch?? I'm trying to keep everyone positive and they just seem to be Debbiedowners. I know that GBM is a monster but you have to have hope!

Thanks, take care, and hang in there!!

gomez1024
Posts: 1
Joined: Jan 2010

Last January 18, 2009, I lost my beloved father with glioblastoma, stage 4 brain cancer after diagnosed on August 18, 2008 {5 mo battle}. He underwent brain surgery, successfully and two days later underwent an emergency surgery to eliminate brain pressure and fluid build-up. And, late October, 2009 started chemo (Tenodar) and radiation therapy. The chemo he tolerated well, but the radiation did more physical changes after the three week of treatment he was wheelchair bound. His gait became a problem for fall risk and injury that he needed to be closely monitor. On, January 2, 2009, he was re-admitted to the hospital and on the 3rd diagnosed "terminal". A part of me die that day that I, we could not do anything else for him. My Dad wanted to come home and refused to undergo another surgery or further treatments, so we brought Dad home under hospice care 24/7. I slowly witnessed my Dad dying and sat many nights with him holding and kissing his hands. Peacefully, he passed in his sleep January 18, 2009. A part of me felt relieve he no longer was suffering or in pain. I had the opportunity to say to good-byes to him and expressed my love for him and for being a wonderful and amazing father to me. You will know when the moment is right for you.
My family and I were in so many roller-coaster rides that it became stressful,emotional draining and many days I cried with so many different emotions I was loosing myself. All I can advise you is to get family and friends support because without them I was breaking. I had to get myself together in order to help my Dad through the process. This will either make you and your family stronger or break you. My family and I were blessed to be there for my Dad. He was a man who dearly loved and cared for all of us. He was a husband of 46 years to my mother, a hard working man, a grandfather to 8 grandchildren and 1 great-grand-daughter and one on the way. He was a wonderful person.
When my father was diagnosed his only medical complaint was feeling dizzy and we noticed short term memory loss, flat effect facial expressions, and became withdrawn something he never did; especially to his grandchildren. I droved him to the emergency room because I thought he was experencing "mini-strokes" due to his history of high blood pressure that was under control with antihypertensive regimen.
Ali, please keep in mind that every individual is different and responses to treatment differently, so please don't give up hope. Support him and love him til the end. I wish both you and Aaron God's blessings. I will keep both of you in my prayers. Again, allow family and friends to assist you with anything possible it will not be an easy process.

gomez1024

Cleopatra89
Posts: 1
Joined: Dec 2009

Hello everyone , iam a sudent whose doing a survey about brain cancer therapy , and i need some patients to answer some questions , iam asking if u can please answer these questions
1- name(optiona) , 2-age , 3- gender , 4-occupation(optional) , Past medical history and past surgical history if present.

5- How do u rate ur quality of life: poor - fair - good - very good - excellent
6- when (years old) it was discovered?
7- sings and symmptoms observed?
8- Type of brain cancer?
9- what type of treatment: surgery or chemotherapy(please mention the dose and route of administration and the name) , radiotherapy (mention its type) , steroids (mention the name)

10- if u recieve any other treatments?
11- the last time u recieve a treatment?
12- what are signs and symptoms annoying u about the treatment?

peacefulheart
Posts: 34
Joined: Jan 2010

I am so sorry to hear that you and you husband are going through this. My husband of 31 yrs was diagnosed with GBM 4 in September, only 2 months after I was diagnosed with stage 3 breast cancer. Since he had surgery, he has had radiation and temador daily for 6 weeks. He is now on temador 5 days a month. Through radiation he was an energizer bunny because of the steroids. But since he has been off them for over a month now, he sleeps a lot. Sometimes he is a bit forgetful, but in general he is doing well. I pray for strength and courage because I know that no matter what happens I will need these to get through the hardest times to come. My heart is with yours.

agariepy
Posts: 3
Joined: Nov 2009

Thanks everyone for your posts. They have been helpful to read and look over. After the surgery my husband was experiencing fatigue, some loss in his vision, hearing and short term memory. He had his surgery done in Toledo, OH but is now receiving his treatments from the Cleveland Clinic. He is currently taking Keppra, Pepcid, and Dexamethasone while under going radiation and chemo (Temodar).

The BEST thing that I have found in regards to my husbands well being was changing is diet. As I'm sure you know from doing your own research, we all have cancer cells within us but what makes a difference is whether our bodies are able to seek and 'destory' the cancer cells effectively. And the best way to do this is by changing their diets in order to build up a healthy immune system. What this means is no more meats and very little dairy products. Make sure that they are eating high amounts of vegetables, fruits, nuts, leafy greens, and whole wheat grains.
We recently bought a juicer which has made such a difference in my husbands energy levels and alertness. We juice carrots, apples, celery, and wheat grass every morning. He drinks 500 ml.

Please read and do research on this subject. I don't want to write too much but like I said, it has made all the difference in my husbands health. The oncologist are now so surprised at how well he is doing.
Best of luck to you!
Ali

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