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Glioblastoma grade IV

amy020891
Posts: 3
Joined: Feb 2010

My husband is 45 years old and on September 18 was diagnosed with glioblastoma grade IV brain cancer. He has 2 tumors that are both inoperable, confirmed by several doctors. He has had the standard treatment of 7 weeks chemo plus temodar and is now on his 3 round of maintenance temodar (300 mg 5 days on 23 off). He is also taking the steroid decadraun once a day (4mg) and has many side effects. His back and knees hurt him very much. However, because of the steroids he has gain almost 40 pounds. His first scan showed some shrinkage and the second one showed no growth but no shrinkage either. He is very weak some days and other days he seems stronger. I don't know that he will ever be the same. Can anyone tell me if they are or have experience what we are going through and what to expect from here on? It is very hard not knowing. We have 4 children (all teenagers) and I honestly don't know what to tell them. They only see that their dad is not the same person and don't know what to do.

peacefulheart
Posts: 34
Joined: Jan 2010

Dear Amy,

First off, welcome to this site that will be very helpful to you and supportive. I am so sorry about what you are going through. My husband was diagnosed in Sept. also. He was able to have most of the tumor removed and since has gone through radiation and Temador daily for 6 weeks. He now is on Temador420 5/23 monthly. He also put on weight while on decadraun but his arthritis actually got better. The first 2 rounds of 5/23, he slept 18 hours a day. I didn't know if it was all because of Temador, if he was depressed, or if he was just in a pity party mood. This 3rd round he greatly improved. He naps during the day for a couple of hours and is far more engaging, but he still is not very physically active. But over all things are getting better. We have a daughter in her 20's still home and she was constantly asking me if her dad's behavior was normal. I kept assuring her it was and that it would slowly get better. I know how hard it is to keep your own spirits up, much less your childrens. I don't know what the future holds for us, but what I do know is that, although I have very little control of it, I do have control over how I react to it. I pray, not for a miracle, but for strength and peace in my heart. I will pray for this for you also.

Cathy

amy020891
Posts: 3
Joined: Feb 2010

Dear Kathy,

Thank you. It does help to know that we are not the only ones on this journey. How old is your husband? Where do you live and where is your husband being treated?

This has been so hard for my children. My husband was so active in there lives...PTO vice president at there school, coach in soccer, softball, and baseball...It has just really devastated them and me. I fear he will never be the same person he was. I just hate it for all of us and anyone else going through this.

Amy

peacefulheart
Posts: 34
Joined: Jan 2010

Hi Amy!

My husband is a young 67 year old, physically active and in general good health until the cancer diagnosis. We live in San Diego and treatment is through Kaiser Permanente.

I know how hard this is for your children. The idea of losing a parent so young is hard to understand. Our daughters are 27 and 24. They were hit hard twice hard within 2 months, as I was diagnosed with breast cancer stage3, before my husbands diagnosis.Two weeks after my mastectomy was when my husband was diagnosed. They are facing losing both parents possibly just a few years apart. What I tell them is that this our life now and we need to accept it and make the most of it. I let them know that I'm scared also and that the emotional rollercoaster is normal and not to feel weak or embarrassed about it. What I most impress upon them, is not to dwell on the way things were, nor to spend their energy worrying about the future. Now is what counts! Sure things aren't the same but life is not all bad. They STILL have their dad. I have volunteered for a hospice here for nearly 9 years and have learned some things along the way that are helping me now. I have found that recalling and sharing the fun times, lifts everyone's spirits. Laughing is great medicine and will make you feel so much better. And it will make your husband feel so appreciated and loved.

Amy, remember you are not alone in this. I'm going to add you to my favorites. I'm really not too savvy about how to exchange email addresses behind the posts, but maybe I can figure it out if you are interested. I'm here for you!

Cathy

pplavenau
Posts: 2
Joined: Feb 2010

The Am. Cancer Society in Anchorage provided a great counseling service for our grandchildren, free of charge. Our children's faith in Jesus as savior and a life here after in heaven has given them the strength to have a measure of joy in the midst of saddeness. By all means involve them and be honest with them. Our hearts and prayers will be with you.

JanieGirl
Posts: 1
Joined: Feb 2010

Amy,
just had surgery on 2/22 for glioblastoma grade iv tumor. sorry he couldn't get the surgery, i'm coming out of that now and it is no picnic, though i know it does help the whole deal. I was shocked at what recovery from getting your skull cut open was and is like.
i'm 52 and i hear that's young for this in a good way, they think it might have been in there several months based on the size i think 5 centimeters. i'm ready to be able to go out on my own, everybody is so concerned about me using a walker to just walk down the hall to go to the bathroom. they say i will do the same chemo plus radiation, once the scars heal. I was lucky enough to have an aneurysm expert Dr. Arnold at Semmes Murphy in Memphis as my surgeon, everyone in the business in town indicated that as soon as they heard who i was getting. wow. geography, technology, insurance. my surgeon said that in most countries i would not have gotten the surgery. so i am one lucky lady. in addition,my surgeon operated on another man about 4 years ago with the same deal, and that guys is a cardio surgeon and is still operating and traveling. is the temodar causing him any trboule i am a little scared of that, which may start in 2 weeks. they say they will not be keeping me on steroids so hopefully i won't have that weight issue.

my kids are21 and 24 and as of today, it's not been identified as a death sentence, though it is a serious issue. they are holding up. my ex came into town to help and that has been good as well. i am geting married in april so my fiance and ex are getting a chance to connect. how strange life happens at times.

i feel strangely confident, could be the effect of surgery, doc said i could lose some inhibitions...or maybe that's just the tumor in my head doing that, had been forgetful for months, my personality changed, people were worrying about me being different so i know what you mean, my big problem seemed to be a daily headache.

peacefulheart
Posts: 34
Joined: Jan 2010

Amy,

You have been on my mind lately. How is your husband doing? How are you and your children coping? I pray that things have gotten somewhat easier for you. My husband has his 6th month post surgery MRI this coming Monday. Once again we hold our breath until we get the results on Thursday. The last 3 MRIs have shown no new growth of the tumor. When was you husband's last MRI and is he off the steroids? You are in my prayers.

Cathy

amy020891
Posts: 3
Joined: Feb 2010

Cathy,

Thank you for the thoughts and prayers. We are all doing ok. He had an MRI on March 9, 2009. He was put in the hospital that same afternoon because they did another test and found blood clots in his legs. He had a surgical pocedure to put a filter in so the clots could not go to his heart or lungs. They can not put him on blood thinners for fear of hemmoraging in the brain. His MRI showed no growth and also no shrinkage.

His joints and back are hurting him pretty bad. I am assuming that the cause is from the steroids.

We are pretty much at a stand still. He has temodar 300 mg. for 5 days and off 23. The doctor tells us when he sees progression of the tumor he will put him on avastin....until then we just kind of keep things the same.

Amy

rydyka5
Posts: 2
Joined: Mar 2010

hi Amy,

new here but just read your post. I am taking care of my mother(she is 63 and i'm 39) and I'm on the same kind of rollercoster ride. It is devastating to watch someone go through this. We are dealing with short term memory loss, balance issue, fatigue, weakness from the large dose of steroids to prevent the headaches, vision loss, personality change and just the inablility to complete everyday tasks. It is even hard for her to leave the house or be around my three kids because the noise is too stimulating for her. She was diagnosed Oct. 1 with what pointed to GBM inoperable but the biopsy said it was AA grade III. She hasn't worked or driving since that day. It is so terrible so I can't imagine doing it for your husband. My mom just started Avastin since temodar didn't shrinke it and it has even grown.
Sorry I don't have good news but wanted you to know I feel your pain.
If you are interested in talking my e-mail is j.giandonato@comcast.net
My name is Heather.

hmt
Posts: 1
Joined: May 2010

Hi Heather,
My name is also Heather, and I wanted to ask you how the Avastin is working for your Mom? I am new to this discussion board; I have been reluctant to join up until now; I have been reading everyone's stories for months, and my heart just breaks for everyone here. I feel compelled to check in, and see how everyone else is dealing with this. My Mother was diagnosed with GBM IV in October 2009 at 49 yrs of age. She had the standard treatment--surgery to remove the tumor, radiation, and chemotherapy. Unfortunately, she could not tolerate the Temodar and was having to receive platelet transfusions every other day. She has not been on any chemo since Dec. 09 and finished radiation in January 2010. Her first MRI showed the tumor was trying to re-grow, so her doctor placed her on Avastin and she had surgery to put in a port. The second scan after having the Avastin showed significant shrinkage, and the doctor was very pleased with the results. For now, she will be on Avastin every other week for the next 5 months. I think the hardest part is the not knowing how things will go; I've heard so many people here say that same thing, and I understand why. You mentioned the short-term memory loss, change in personality, fatigue, etc.---these are all things my Mother is still experiencing. She has actually lost a lot of weight, but that's mainly due to anxiety about this more than anything. She tolerates the Avastin very well, but I'm like a lot of people out there now, trying to figure out how long the Avastin works, what's next, etc. I'm sorry to hear that you are going through this extremely difficult time; if you have any news about how the Avastin is working for your Mother, please let me know. I feel like we're just on the cutting edge of this medicine, and there just isn't enough information out there about how long a person can remain on Avastin and whether it actually extends a person's life. So far, my Mother has never asked the doctor for an actual prognosis, so none of us in the family ask either. She is doing fairly well now that she had some good news with the last scan; her next one will be on 6/11, so we're hoping for more good news. I'm just trying to follow others' stories and hope for the best.
I hope this message finds you and your Mother well. God Bless.
Heather

DeborahLD
Posts: 4
Joined: May 2010

Have you ever watched the veria TV channel? I would not know what channel that would be with whatever cable company you may have? They have on at certain times of the day, INCURABLES-these are true life stories about people who were pronounced incurable of their cancer. Or people who couldn't take the standard treatments any longer-because they weren't getting better, but worse. I myself, don't believe in the standard help we receive for cancer or for most illnesses for that matter. I lost a grandmother to gliblastoma and my Mother to gallbladder cancer. Try to watch that show, search out information on cancer besides the traditional. One of the TRUE stories on this health channel was a 14 yr. old that had Ewings sarcoma. She had high dose chemo in Tx somewhere. And she didn't want it anymore -she was getting worse. her father stayed up nights and reasearched for another answer. He found the name of a Dr. Forsythe in Reno Nevada. He cured her with the same chemo she was getting from her traditional Dr. in Texas. But at a MUCH lower dosage. And he used alternative medicince most importantly. She became better in a short period of time and is in remission. I know it may sound to good to be true. But I would research that Dr. I found him on the Internet before I typed this.

kathyp
Posts: 4
Joined: May 2010

First time to this web site...got it from a Caregiver Seminar here in Rochester, NY where I live. My husband (2nd marriage) of 17 years was dx with Glioblastoma of Frontal Lobe Grade IV, inoperable. I have not spoken to anyone or met anyone in the same situation. Everyone I have spoken with has had a resection. He is 67 yrs old and in great health if it wasn't for this. He did the six weeks radiation and only 5 weeks of chemo as his counts dropped. Now after 28 days...he is 5 days on Temodar 370 mgs and 28 days off. He is also taking 4 mgs of Decadon which will help keep the swelling down after radiation but because of all the side affects they want to wean him off at some point. Some days are better than overs. He has had only one MRI since the biopsy which was after six weeks of treatment. His next one will be in June 2010. No muscle aches and pains as your spouse but some days he is weaker and sleeps more than others. He has a video business and works from the house. His love of this has kept him going. The docs say the MRI in June may still show some swelling due to the radiation and maybe the one in August will show if any improvement. His cognitive skills are affected and he has trouble grasping words...this hinders him when dealing with business but all the people in his circle are great in dealing with him. Just let him know you are always gonna be there for him...as he would you if the roles were reversed. Please keep me posted...my hsuband was diagnosed the first week in Feb 2010.

tammymccracken
Posts: 4
Joined: Feb 2011

Amy,

I am reading your posts and its as if I was writing them... my husband is 46, inoperable, personality changes, decadron... right down to the blood clots. (They have my husband on Coumadin right now to try to clear those...)

Where do you live? I'm new and not too savvy at this but would like to exchange information with you.. I live just south of Atlanta, GA.

Hope to hear from you soon...

Tammy
tammymccracken@bellsouth.net

franciscojgm
Posts: 1
Joined: Mar 2010

My mother was diagnosed with glioblastoma multiforme on august 24th she had 3 surgery and 35 sessions of radiotherapy and she is having the budwig protocol (nutritional treatment)and the first session of avasting with cpt-11 she is on her 8 month since was diagnosed

danielgharper's picture
danielgharper
Posts: 13
Joined: Apr 2010

I've done steroids and gone through 6 weeks of radiation and chemo treatment. I supported my body through natural homeopathic medicines (prescribed by a an ND) and by eating a simple diet rich in certain nutrients, as well as by juicing and such. I've heard that steroids can actually make a tumor grow faster, and I had terrible side effects from dexamethazone, or whatever its called, decadron, or some name like that sounds like a Transformers character.

God bless, danielgharper

crovn
Posts: 22
Joined: Apr 2010

My mom was diagnosed with the same thing about 10 months ago. I am 15 years old, and I think I know a little bit what your children are going through. It is definitely a hard process. My mom was on steroids too, and she gained weight like crazy! When she was taken off of them, she lost all the weight. My mom was placed on temodar and went through radiation. Luckily, they were able to get out 90% of her tumor, but it is still fast growing. She also started a clinical trial, which is supposed to help keep the tumor from growing. It was very successful in other parts of the body, so we are hoping this will help the brain.

If you need to talk about maybe what your kids are feeling or going through, I am here. I pretty much have felt everything.

-Courtney

kathyp
Posts: 4
Joined: May 2010

Your mom is lucky to have a daughter like you. Your mom's resection of the brain made it possible for her to do the clinical trial....I wish my husband qualified but he is still doing okay. Keep me posted on how she is doing...stay strong and be good to yourself.

ymprlp
Posts: 2
Joined: Apr 2010

Hi..my husband is 60 yrs old and was diagnosed with GBM around March, 2010. His tumors are inoperable as they are too deep in middle of brain. He started his 4th week of radiation May 10th at Johns Hopkins in Baltimore, MD. He takes Temodar every day including weekends, 180 mg. He takes decadron 4 mg twice a day. He has maintained his weight though we were told he could gain weight and his face may get puffy. Before the steroids he had mild headaches and some nausea which the steroids seem to have helped tremendously. I know people can have problems from the steroids. My husband has an occasional ache/pain but not much. He trys to walk a little each day. He will take a small nap early around 10 am. His doctors said while on the steroids to walk around house to strengthen leg muscles as the steroids will weaken the muscles. My husband is very easy going and has the patience of Job but the steroids make him irritable. Also, I think the radiation is what makes him so tired and weak. Plus, the raditian affects his memory and some speech like mixing words up but not too bad. I hope this is some help to you. I can answer any questions you might have when I am able...my husband and I have no children. He has 2 grown daughters and 3 small grandkids. His first wife died from non hodgkins lymphoma. Good luck and may God Bless you in your journey....Yvonne

kathyp
Posts: 4
Joined: May 2010

How ironic...my middle name is Yvonne.

If you read my on line from earlier today you can see my husband Henry has inoperable, age 67. His was right frontal lobe. Henry started low dose like your husband along with the radiation. His face got puffy also...since he has gone from 4 mgs to 2mgs after the radiation, he puffy face has gone down some. Although he has not had headaches, like I said before with the right frontal lobe, his speech (trying to grasp words to finish his thoughts) is like pulling teeth. The steriods will weaken his muscles, I glad to hear he is walking around the house. We live in a raised ranch so he has to go up and down the stairs to his video business every day...Where the steriods make him irritable...he can also be depressed some times also.....stay strong Yvonne...and keep me posted.

ymprlp
Posts: 2
Joined: Apr 2010

My husband's tumor started out on the left side of his head, the parital lobe but it's close to the temporal lobe also. The part that was concerning to his doctors was what they found deep in the middle of my husbands brain along the corpus calseum if I have spelled that correctly. We live in Alabama but traveled to Johns Hopkins for treatment. We are staying with my husbands sister which is a blessing. My husband has good days and bad. Normally after treatment he seems tired and weak but yesterday he seemed to feel okay. Now this morning he feels tired, weak and sick. He has never thrown up but feels nauseous today. He has done fairly well. We don't ask prognosis...I can read all that online. His troubles all started Feb 6th when he had trouble talking at work, he came home and we went to the hospital and he had one grand mal seizure. Then eventually he was diagnosed with GBM IV and he could not have surgery as the tumor is deep in the brain. The left side tumor is stable per the doctors. My husband has 13 more radiation treatments after today and then we will go home to AL and have follow up treatment with more Temodar. This has been a nightmare. My husband was going to retire next year and we had been planning for that...now with all the medical issues at hand we are on hold. Life as we know it will never be the same again. It is tough but we must go forward. This is my first marriage and my husband is a wonderful man. I ask myself every day WHY? I know there are no answers. My husband gets a little down some days. I tell him that we will make it, that we have to get through treatments and we can go home. I have to encourage him and help him all I can. His daughter knows a woman who is about 66 and she has had GBm for 19 months. I think she had surgery though which makes things different but she too is on Temodar. She is weak and lost a lot of weight. She only weighed about 90 pds to begin with. My husbands weight is good for now. He eats best in the morning, little at dinner. He sleeps well, thank God! I wish we were at home so he could putz around the house and talk to his coworkers but it is what it is. We are here for treatment not convenience. I think having a job to occupy ones mind really helps. It gives them a distraction though I am sure some people are unable to work and I understand that too. My husband is losing his hair on the sides where the radiation hits. His face is not puffy, not yet. I hope your husband is well and hang in there! Yvonne

kathyp
Posts: 4
Joined: May 2010

How ironic...my middle name is Yvonne.

If you read my on line from earlier today you can see my husband Henry has inoperable, age 67. His was right frontal lobe. Henry started low dose like your husband along with the radiation. His face got puffy also...since he has gone from 4 mgs to 2mgs after the radiation, he puffy face has gone down some. Although he has not had headaches, like I said before with the right frontal lobe, his speech (trying to grasp words to finish his thoughts) is like pulling teeth. The steriods will weaken his muscles, I glad to hear he is walking around the house. We live in a raised ranch so he has to go up and down the stairs to his video business every day...Where the steriods make him irritable...he can also be depressed some times also.....stay strong Yvonne...and keep me posted.

cjtoth
Posts: 1
Joined: Oct 2010

Hi Amy,

I am in a very similar circumstance as your husband. I was diagnosed with a very large, inoperable oligodendroglioma 8 years ago, at age 44. I was initially placed on corticosteroids (decadron and then prednisone) after my biopsy, gaining over 40 pounds, ballooning from 175 to over 215 pounds. I've lost a lot of the weight and look a lot better since tapering off of the steroids, but it has been very hard to shake some of the excess weight. From what my wife and family tell me, the steroids really did a number on my personality. I'm ashamed to say that I was apparently not a pleasant guy to be around. I can't remember most of the behavior I exhibited and other things they say I did. I thought that I could control myself and there was no way those tiny pills could have such a huge affect on me. I am happy to say that I reverted back to my old self after I slowly tapered off of the medications.

I was also treated with Temodar. Initially, I was on the same regimen as your husband for 24 months. After an 18 month break, my doctor noticed some new growth, and I did another closely-monitored 12 months. I absolutely hated the stuff, but it was a necessary evil. I am happy to report that my tumor appears to be fairly stable.

I realize that this has also been hard on my wife and kids (two daughters, currently 17 and 8 years-old.) I try not to complain about the rock in my head, and most days seem fairly normal. It is very frustrating for me however, because I don't think my wife fully understands how the tumor is affecting me. Because there are no outwardly-visible, physical symptoms, I think it's easy to forget I've got this thing. I also suffer from the stupid male-pride thing, not wanting to be a burden on anyone, thinking I can handle this just fine on my own. I keep a lot of my worries and fears from my family. I don't dwell on the fact that I have a brain tumor, but I still have my deeply funky moments - usually at very private times.

If your husband is anything like me, he's probably incredibly frustrated that he can't be there to provide for his family, in the same way he is accustomed to. I also want to make sure that my family is provide for and taken care of, in case things take a change for the worse.

Since your kids are in their teens, I can only suggest that you be honest about what is happening to their father. The teen years can be tough on the whole family under the best of circumstances. Unfortunately, they have to face something that most of their peers will never know, and they will be forced to grow-up a little more quickly. When my youngest girl was smaller, I simply told her I had a "brain-owie." Now I can be a little more honest with her. Make sure they understand that this is not his fault, or their fault.

Your husband probably has a very gentle psyche right now, so don't treat him like a helpless baby. It's important and therapeutic for him to feel like he can still do things and make positive contributions to support the family. I think he also realizes that this is hard on you and the kids, so don't feel like you have to be a martyr. Don't feel like you have to sacrifice everything to take care of him 24/7. He realizes that you need a break every now-and-then, so don't feel guilty that you need to "get away" from time to time. It will probably make him feel better, knowing that you and the kids can feel comfortable relaxing, taking a break every so often.

I hope all is going well for you and your husband, Amy. Although I have a different tumor than your husband, I think our circumstances are very similar.

Good thoughts are with you.

- Charlie

summerjones
Posts: 3
Joined: Oct 2010

Hi Everyone, my wife was diagnosed with a frontal lobe mass in April, after complaining of massive headeaches for a few weeks, confirmed as gbm IV during surgery on May 24th. We were very fortunate to be treated at UCSF in San Francisco and she had a complete and successful surgery which removed about 95 percent of the tumor. She then did six wks of radiation and temodar when the surgery had healed, and is now on her second cycle of temodar 310/5days. Her first cycle was difficult with lots of fatigue during and after the five day cycle. We have changed the anti-nausea meds in hopes of alleviating some of the nausea. Overall, her hair has started to grow back now two months after radiation and all her cognitive and language skills are normal intact. The big game changer hopefully here is a vaccine that was made using a heat shock protein technique using her actual tumor so that she is being given a total of 22 vaccines over the course of a year and a half. Her attitude and approach to live are inspiring and we live in the moment most of the time.

sfg1017
Posts: 5
Joined: Jan 2011

Hi, I am trying to find out about delayed nausea and vomiting related to Temodar. My husband (62) was diagnosed on 9/1/2010 with a GBM. He had it removed on 9/6/2010 and then underwent the 6 1/2 weeks of radiation and Temodar. On 1/7/2011 he started with the 5 days of Temodar with the addition of another chemo agent, topotecan, on days 2-6. A day after he finished he was hit with the nausea even though he continued to take Zofran. Was this the case for your wife? I just hate seeing him feel so bad. The fatigue has been an issue as well. Thanks to anyone reading these posts. I welcome any information you can share. I am trying to stay positive.

mishamurphy
Posts: 2
Joined: Mar 2011

Hi summerjones,

My mom, who's 52 years old, was diagnosed with Stage IV Glioblastoma in her frontal lobe on the right side in January 2011. She had a very successful surgery soon after at a hospital near home. Then she was lucky to have Chemo and Radiation done a UCSF as well. Both of which have just finished their 6 week courses.
I don't really know what to expect from here. What did you experience with your wife?

3sweetbabies
Posts: 1
Joined: Oct 2010

My husband, John, who has been an athlete and coach his whole life, had a headache and a little nausea on October 17th. The headache never really went away, which was odd since he truly never gets headaches. He went to the doctor on Wednesday the 20th, was sent to have an MRI, and we discovered he had a 4 cm mass on his brain. Friday morning, we went to see Dr. Aulisi at Washington Center Hospital in D.C. who immediately admitted John. The tumor, he told us, was close to putting pressure on his brain stem, and they needed to operate as soon as possible. He told us it was likely a high grade.

They operated Monday, October 25th and were able to get the entire thing out, plus a clear margin. Three days later, they confirmed it was a grade 4 tumor. With John healing so well we were able to go home later that day, just three days after surgery. That was Thursday.

We have a 4 year old son, a 2 year old daughter, and an 8 week old baby boy. With the help of a wonderful friend, tonight we were able to all go trick or treating. I don't know how I am going to hold together-- I fluctuate from pretending nothing is wrong and making jokes, to snapping at the kids, to hiding so that I can cry. I have fibromyalgia and an anxiety disorder and am still feeling the affects from the third c-section. A wonderful community has swarmed around us and wrapped us in positivity and love, but I still feel lost and alone, angry scared bitter afraid lost...I don't know how to do this! I thought I'd look for a place like this to air some of this mixed up conglomeration of emotion, and appreciate any advice, insights, etc from those going through similar situations. Blessings from the universe/god to all of you and those you love...

Beckymarie
Posts: 358
Joined: Aug 2009

First let me tell you how sorry I am that you are going through this. My husband was diagnosed with a GBMIV and it was very hard on all of us. Have you seen your doctor? I have never been one for medication but have to admit, going on an antidepressant and anti-anxiety meds was extremely helpful. I also started seeing a counselor. She was the one person that I could vent and cry to and not get alot of cliches back. Accept all the help that is offered. A friend setup a website "Lotsa Helping Hands" where you can list things you need help with: meal prep, yard work, babysitting etc. and friends can sign up to take on that task. People want to help. You and your family are in my thoughts.

wheezie457
Posts: 1
Joined: Nov 2010

My sister was diagnosed in June and had surgery 5 days after. She has completed 5 weeks of radiation with Temodar and now is on a higher dose of Temodar and is in a clinical trial of Avastin concurrent. I know exactly how you are feeling and I didn't have to also deal with children. I found myself going on line and reading everything I could on Glioblastomas and then I stopped as I was getting depressed. I can see where an anti-depressant might help and definitely talking to a counselor. In the beginning everyone rallies around you but eventually as things are stable, you're on your own. One thing I did do is open a page on caring bridge as I was finding it very difficult to answer all the emails and telephone calls; now I post a message once a week and everyone can go look and check out my sister's progress. It's been a great help. I work in the medical field so have more information at hand than is sometimes wanted; but you need to be an advocate for your husband and make sure he is getting everything he needs and that everyone is communicating with you on the medical side of things. My heart goes out to you and everyone else who is dealing with this dreaded disease. My father died at the age of 55 with the same thing - so it definitely has hereditary traits. My prayers are with you and if I can help in any way - don't hesitate...

hope4GBM
Posts: 7
Joined: May 2011

My husband age 56 also has GBM. I cant imagine what you are going through with 3 little ones. My heart and prayers go out to you. My girls are grown (30 and 28) and its been pretty hard on them. Maybe being so young is a blessing since they won't remember this rough time.
This site has helped- I just read where one man has had GBM for 8 years.
I also need support - I'm still in shock! We are going to Dana Farber in Boston and they are wonderful.
My husband has had 2 good MRI's with no new cell growth. He has his next one in June.
He is doing the standard treatment and is also on the trial drug- Zachiam every other day. He will finish his temodar phase in Dec and then just be on the trial drug as long as there is no change.
His was in his right tempral lobe. and they got all that was visible and got a clear margin around it taking an area of about the size of a lemon. The Doctors thought that he had only had the cancer for about 7-8 weeks and he was also very fit( ran and lifted weights). We are 7 months out and doing well.
He has personality change- worry is the biggest change that i see and he is extremely tired and never very happy. I'm hoping this changes ?

I'm here if you need to vent!
Think of you often-

Hope

DistancerunnerXC's picture
DistancerunnerXC
Posts: 44
Joined: Mar 2011

Our doc had me take my wife to a psychiatrist.
The necrosis had been managed excpept for the cognitive problems but there are severe personality changes..
She told the psychiatrist right up front that she did not want to do housework anymore and when asked who does it, said "he does it",,,and when asked whether she thought she should help since I work all day and all that..laughed and said "no"...
Man, that made me mad. (and of course it should not have) and when her mom laughed about it and dismissed it, I hit the roof! (of course I shouldn't have)
All she wants to do she admitted was sit in front of the TV with her Charlie Brown security blanket and stare into the tube (she dosen't actually watch the tv)
21 months.
See, you gotta recognize these feelings as a caregiver and do something to handle them..I handled them wrong this morning when I flew off the handle about it..
What can you do?
I'm looking into occupational therapy but I am quickly coming to the conclusion that A:LL therapies are useless and it's just plain up to the poor victim of this disease whether or not they come out of this fog.
In the meantime, you have to understand that what you have is NOT a sspouse anymore..it's a time bomb or a kid..or a mill stone around the neck?
there, there i go again.

hope4GBM
Posts: 7
Joined: May 2011

WoW! Sounds like you are struggling and very angery. Luckily my husband and I have a wonderful open door of communication and he is - other than a worry wart and having short term memory loss - very much the same person he was before GBM. He is exercising, cooking some, driving now, and trying to adjust to not having much energy. One thing very bothering is that we realize he probably wont be going back to work, but we 'll have to adjust to that. We have faith that he is going to be the Poster Guy for GBM survival.
Take care- be positive- good luck!
Hope

EDClarke
Posts: 5
Joined: Aug 2011

I love your optimism! You and your husband are an inspiration to me and mine. My huisband is 26 and we have a 1 year old daughter together. He just received his GBM diagnosis and is starting treatment next week. We are determined to fight this together and put in all that we have! If you have any words of inspiration to share about your experiences, please feel free to email me directly at KAC_Warrior@yahoo.com.

4theloveofmysis's picture
4theloveofmysis
Posts: 248
Joined: Apr 2011

Dont be to hard on your self. I am a nurse a long with my sister having GBM. When I discharge patients from the hospital sometimes I tell the husbands that there wife cant do dishes, housekeeping etc for a couple of weeks they always get a good giggle out of it.
(the wife that is). Believe me I know what you are going through. I have put my life on hold. Things that were important to me arent anymore. Its really hard for me to work and take care of others. Some how lately Im getting all cancer patients. My sister is in the hospital right now. The stress is over the top....

madisonmuzz
Posts: 13
Joined: Apr 2011

I enjoy reading your posts. You seem to be a very positive person. That is what I need right now. I am also a healthcare worker, Nuclear Medicine. It is so hard trying to give care to all your patients and then return home to do more healthcare. I would not change either part of my life, but if I could I would get rid of my husbands GBM in a heartbeat. I wish I would wake up and have it a very bad dream.

I agree with your statement, "things that were important to me aren't anymore" and live one day at a time.

Hope to hear your sister is doing better. I will keep you both in my thoughts and prayers. Sometimes it is harder on the caregiver than the actual patient. Take care of yourself too.....

MAJW
Posts: 2515
Joined: May 2009

Your wife never knows you consider her a "milestone around your neck". My best friend just passed away 2 months ago from a Glioblastoma Multiforme Stage IV.....we all watched as we slowly lost the "person she was"...she fought this for 2 1/2 years....her personality changed, her memory was shot, she was had paralysis in her arm and leg....she was 52.....this can't be helped....this is considered a brain injury that can't be fixed....it's not a fog, something that she can "snap out of"! Don't you think she'd want to do ALL the things she did before illness struck her, if she could...I'd bet she be happy to trade off her illness for house hold chores....
Do you have friends or family members that could help with household things, meals etc.? Ask them...the worse that can happen is they say no...people really do want to help...and since they can't help the patient, this is their way of helping ! We set up a meal plan for my friend and her family...people signed up for certain dates...usually every other day, as there is usually enough for left overs....
Also find out about CLEANING FOR A REASON". They will clean once per month for four months for women under going cancer treatment...Then perhaps friends could fill in in-between...

Thankfully my friend had the most amazing husband...as do I as I have battled cancer myself....You should get into a support group yourself or therapy as a caregiver...you might find the help you need....I know it's a terrible struggle to be a caregiver....

Beckymarie
Posts: 358
Joined: Aug 2009

When my husband was in the hospice phase of his cancer, a friend setup a site for us on Lotsa Helping Hands. This was extremely helpful. It gives friends and family a place to sign up for tasks to help a family going through a challenging time. We had two meals a week delivered to our home. It was a trememdous help. You can list any type of task: cooking, cleaning, yard work etc. Members of your community can sign up online for a task. People want to help but don't know what to do...this gives them an opportunity to help and relieves some of the stress you are dealing with as a caregiver.

sailaja
Posts: 2
Joined: Jun 2011

CSN helped me a lot in understanding my dad's situation.

My dad(70 years) has been diagnosed with left temporal GBM 4 on June7, 2011. He had undergone Craniotomy and excision of tumor on June 15, 2011 in India. He is soon to start radiation and chemo.

I would be very happy if any one could email me some information on the Kosovo's Doctor to my email ID getsaila@gmail.com.

Thanks
Sailaja

micgrace
Posts: 131
Joined: May 2011

I am mourning the loss of my wife to this dreadful disease. I know one does feel a sense of relief when it is finally over, but the torture during the diseases progression was horrific. I was hospitalised myself twice due to extreme anxiety.

However, I did spend one night, alone with my wife and that was very memorable although she was in a coma and very briefly opened her eyes and recognised me.

I am truly and deeply sorry, however you will find much support on this site and can PM me if needed.

micgrace
Posts: 131
Joined: May 2011

I am mourning the loss of my wife to this dreadful disease. I know one does feel a sense of relief when it is finally over, but the torture during the diseases progression was horrific. I was hospitalised myself twice due to extreme anxiety.

However, I did spend one night, alone with my wife and that was very memorable although she was in a coma and very briefly opened her eyes and recognised me.

I am truly and deeply sorry, however you will find much support on this site and can PM me if needed.

johngiustino
Posts: 26
Joined: Apr 2011

Amy,

While I consider myself as lucky as I can be with my GBM diagnosis (here is my background: I was diagnosed with GBM last October, had a 99+% resection, had standard radiation/Temador, and just finished my 6th round of 5/23 Temador and had a clean MRI last month.) I can tell you that I am but a fraction of the person I was before and a seizure a few weeks ago has made things worse. I can no longer drive or swim, I am more tired than before. It saddens me deeply that I cannot spend as much time with my active 5 and 7 year old sons because I am constantly fatigued and often nauseous from chemo. My wife and I spend a lot of time now trying to plan for various scenarios that may happen in the future and it is stressful. I hate the burden it has put on my immediate and extended family. I am only 43 and never expected to get hit with cancer. I have my positive days and my not so good days. There is a period of shock that takes some time to adjust to (the seizure just re-shocked us). I appreciate whatever time I can spend with the kids, even if it is just watching TV while I am half-asleep. Sometimes my wife has forced me out of my shell by visiting friends and in the end I am glad she did. It is important to make the best of your new normal. Medically, with your doctor's consultation, I would try to get him off the decadron, if possible, or lower the dosage. Weaning myself off of that drug made the biggest difference in how I felt. While on it, my joints also ached, and I put on a lot of weight.

I wish you the best,
JG

alexyj23's picture
alexyj23
Posts: 7
Joined: May 2012

My dad who is 54 was diagnosed in April 2012 with GBM stage 4 in his left temporal lobe.  Because it is so deep in the tissue they are not able to remove it.  For the first few months after he found out he wouldn't move from his chair, then he got a burst of energy and had been doing great up until about a month ago.  We noticed he couldn't remember words on occasion and then about 2 weeks ago he got worse.  Now he can't remember a thought or get it out in words.  He had what looked like a stroke, but the doctors don't know what happened.  The left side of his face went paralyzed for 20 minutes and he had to go to the hospital.  He had 33 mini mal seizures on day at the hospital.  I hate seeing him go through this becuase it hurts so bad.  Not being able to have a conversation with your dad is gut wrenching!  I am also 39 weeks pregnant and am going through the worst emotional rollercoaster of my life!  I pray that my dad will be here to see his first grandson and that he will be coherent to understand what is going on.  He and my mom's 30th wedding anniversary is May 13th so I pray to God that he will stay strong and make it for my mom and his grandson and be able to talk and not be so confused.  I am so sorry for anyone going through this.  It hurts your heart.

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