GBM Cancer Stage 4

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  • kulaken
    kulaken Member Posts: 14
    GBM stage 4
    Barbn:

    I also was diagnosed with Gbm stage 4 back on Aug 4th 2011; 3 cm at that time ,It grew to 4 cm in 28 days ,, i chose against resection for the tumor is on my right visual horn affecting my eyesight , the neurosurgeon said id loose more sight if he was to remove it , so put me on Dexamethasone ,, and did 5 weeks of full brain radiation , my last treatment was oct 5th , here it is 4 months later ,, and the good news is it has shrunk in half ,, here is what they plan on doing in my case ,, now that it has shrunk , i will be going through another radiation procedure called ,, Gamma Knife ,, im scheduled for next week , as the Dr.s say that chemo doesn't get to that part of the brain to be effective i didn't have to go through that ,, i have lost most of my left field in both eyes , the seizures have stopped , regained my some of my strength back , I am a 49 yr old male in good shape ,, hope this helped , and good luck !!!!
  • barbn
    barbn Member Posts: 33
    kulaken said:

    GBM stage 4
    Barbn:

    I also was diagnosed with Gbm stage 4 back on Aug 4th 2011; 3 cm at that time ,It grew to 4 cm in 28 days ,, i chose against resection for the tumor is on my right visual horn affecting my eyesight , the neurosurgeon said id loose more sight if he was to remove it , so put me on Dexamethasone ,, and did 5 weeks of full brain radiation , my last treatment was oct 5th , here it is 4 months later ,, and the good news is it has shrunk in half ,, here is what they plan on doing in my case ,, now that it has shrunk , i will be going through another radiation procedure called ,, Gamma Knife ,, im scheduled for next week , as the Dr.s say that chemo doesn't get to that part of the brain to be effective i didn't have to go through that ,, i have lost most of my left field in both eyes , the seizures have stopped , regained my some of my strength back , I am a 49 yr old male in good shape ,, hope this helped , and good luck !!!!

    Mayo clinic
    Well we have made a decision to get another opinion before starting Avastin. I got a hold of Mayo clinic in Rochester,MN.
    They recommended seeing them before starting a treatment that might take a way from clinical trials farther down the road.
    So here we are 5 hours from home waiting anxiously for our appointment Monday morning.
    We pray we get better news. Will keep posted.
  • mighty6
    mighty6 Member Posts: 47
    barbn said:

    Mayo clinic
    Well we have made a decision to get another opinion before starting Avastin. I got a hold of Mayo clinic in Rochester,MN.
    They recommended seeing them before starting a treatment that might take a way from clinical trials farther down the road.
    So here we are 5 hours from home waiting anxiously for our appointment Monday morning.
    We pray we get better news. Will keep posted.

    best wishes!
    barbn,

    i can imagine how nervous you must be at the moment. Mayo is a good place to be, but 5 hours away from home is a big challenge too.
    especially lots of the trial requires patients to be on-site frequently! So many tough decision , I wish you the best of luck!

    please keep us posted.

    Jane
  • cindysuetoyou
    cindysuetoyou Member Posts: 513
    barbn said:

    Mayo clinic
    Well we have made a decision to get another opinion before starting Avastin. I got a hold of Mayo clinic in Rochester,MN.
    They recommended seeing them before starting a treatment that might take a way from clinical trials farther down the road.
    So here we are 5 hours from home waiting anxiously for our appointment Monday morning.
    We pray we get better news. Will keep posted.

    clinical trial
    Hi, Barb.

    I'm glad that you are able to get a second opinion. I think that if you didn't, you might later wonder, "what if....?" And the Mayo Clinic sure has a great reputation. I hope that they have some ideas that will help Jesse.

    We tried a clinical trial back in August/Sept/October at NIH (National Institutes of Health) in Betheseda, Maryland. I thought it was going to be a nightmare to have to travel for all of David's treatments, but it wasn't that bad, once we developed a routine and knew what we were doing. We flew there every two weeks...sometimes every week. We are on the West Coast, so we spent an entire day traveling to get there, and another day going home. It was not easy, but it was a lot better than I had thought it was going to be. I had major reservations about having David's care managed long-distance, but these big places are so well organized, and NIH especially bent over backwards to help us in any way they could. They paid for everything....hotel, airfare, taxis when we needed them, even gave us a food allowance. I have nothing but great things to say about NIH. Unfortunately, though, the clinical didn't help David at all. He tried a chemo called Sutent....he had more than 25% tumor growth in one month, and he had to drop out of that clinical.

    Now we are back at OHSU, participating in the Blood Brain Barrier Disruption clinical, and there are people from all over the country staying at OHSU while they get the BBBD treatment. OHSU is set up really well for families...they have a couch bed in each room for a caretaker (spouse, mom, girlfriend/boyfriend) to stay with the patient, they have a separate family sleeping room, a shower, laundry, microwave and freezer for family members to use. And they are really flexible and let me order food off the hospital menu too. So I basically eat for free the whole time I stay with David. It's a big help. I would think that the Mayo Clinic had a similar set-up...at least, I hope so.

    Anyway, I hope that the logistics aren't too much for you if you do decide to go with the Mayo Clinic. I'm thinking about you and Jesse and your daughter and hoping and praying for a good treatment option for Jesse. Please let us know how it goes at the Mayo Clinic for you and Jesse.

    Love and blessings,
    Cindy in Salem OR
    Mom of 28 year old David, dx 5/09 AOIII
  • jbilinski
    jbilinski Member Posts: 1
    mighty6 said:

    trials
    hi barbn,


    Here is the link for the EFGFRviii (CDX-110) trial:
    http://www.clinicaltrials.gov/ct2/show/NCT01498328?term=cdx-110&rank=2

    Toca511- with surgery: (surgery sounds bad, but you might get the virus/vaccine right to the tumor cavity, so this might be more powerful)
    http://www.clinicaltrials.gov/ct2/show/NCT01470794?term=toca-511&rank=1

    Toca511 - without surgery:
    http://www.clinicaltrials.gov/ct2/show/NCT01156584?term=toca-511&rank=2

    All three trials have open sites national-wide. hope you can try to find one closet to you. Your ON might not be aware of those if he/she does not participate in trial programs. In that case, you have to talk to the trial site and get trial related care from Drs. there. Your own ON needs to work with them to carry out your standard care procedure. Yes, there are many requirements/restrictions. but I am willing to move a mountain to find a cure (Julia said it before), I know you are too.

    If you ever decide to go with one of those, please act fast, all the procedures take time, (in weeks, months), contact them for initial appointment, , get the gene testing done. As brain cancer patient, we have to borrow time!


    My husband was dx with GBM4 in July , 2011. We are treated at Baylor, Dallas TX. He is doing great at the moment. Thanks for your thoughts.

    --Jane

    vaccine
    My son Nate (22) was diagnosed with GBM IV on November 17, 2011. He is on his second round of radiation this week along with tremodar before bed.

    Nate is participating in the brain cancer vaccine at the University of Michigan. We picked Michigan because of the location (only 3 hours from home) He had his second surgery January 5th to remove tumor that will be used to make the vaccine. 44 locations are offering this trial (now in phase 2)The original article regarding this was sent to us by several friends. I will send the link to the article below.

    This has been beyond my worst nightmare, and my son is much stronger and braver than I am. I am looking forward to the time I just become numb over it. I am still in the crying stage 3 months later.

    Good luck to you all. It's nice to speak with people that can actually relate to what we are dealing with. friends just can't right now.

    Jolene
    http://www.miamiherald.com/2011/11/22/2514428/new-brain-vaccine-aims-to-turn.html
  • barbn
    barbn Member Posts: 33

    clinical trial
    Hi, Barb.

    I'm glad that you are able to get a second opinion. I think that if you didn't, you might later wonder, "what if....?" And the Mayo Clinic sure has a great reputation. I hope that they have some ideas that will help Jesse.

    We tried a clinical trial back in August/Sept/October at NIH (National Institutes of Health) in Betheseda, Maryland. I thought it was going to be a nightmare to have to travel for all of David's treatments, but it wasn't that bad, once we developed a routine and knew what we were doing. We flew there every two weeks...sometimes every week. We are on the West Coast, so we spent an entire day traveling to get there, and another day going home. It was not easy, but it was a lot better than I had thought it was going to be. I had major reservations about having David's care managed long-distance, but these big places are so well organized, and NIH especially bent over backwards to help us in any way they could. They paid for everything....hotel, airfare, taxis when we needed them, even gave us a food allowance. I have nothing but great things to say about NIH. Unfortunately, though, the clinical didn't help David at all. He tried a chemo called Sutent....he had more than 25% tumor growth in one month, and he had to drop out of that clinical.

    Now we are back at OHSU, participating in the Blood Brain Barrier Disruption clinical, and there are people from all over the country staying at OHSU while they get the BBBD treatment. OHSU is set up really well for families...they have a couch bed in each room for a caretaker (spouse, mom, girlfriend/boyfriend) to stay with the patient, they have a separate family sleeping room, a shower, laundry, microwave and freezer for family members to use. And they are really flexible and let me order food off the hospital menu too. So I basically eat for free the whole time I stay with David. It's a big help. I would think that the Mayo Clinic had a similar set-up...at least, I hope so.

    Anyway, I hope that the logistics aren't too much for you if you do decide to go with the Mayo Clinic. I'm thinking about you and Jesse and your daughter and hoping and praying for a good treatment option for Jesse. Please let us know how it goes at the Mayo Clinic for you and Jesse.

    Love and blessings,
    Cindy in Salem OR
    Mom of 28 year old David, dx 5/09 AOIII

    Mayo Clinic
    Well we made the trip to MAYO CLINIC. The Clinic is amazing and we felt they were on top of the game. It was a very encouraging day. Jess went for blood tests and we saw a nurse practioner and the oncologist Dr. Buckner. As I wrote previously on Jesse's last MRI the Dr. from our hometown felt he saw two new spots on the MRI which he thought looked like new tumors.
    At Mayo they are thinking the new spots are necrosis(dead cells from the radiation) showing up on the MRI. Dr.Buckner feels the way Jess is doing, and usually the 1st MRI is fuzzy and it is hard to see completely. He also mentioned he didn't think it would grow that fast after having rdiation and chemo.
    Anyway, before he decides for sure he wanted to do an e-conference today with the radiologist from our home town. He feels if they targeted that area it could be necrosis. No-one can be 100% sure. If it was targeted with radiation Dr. Buckner will probably keep him on Temodar 5 days a week once a month. (Which is good, cause Jess didn't have side effects). Then we would go back to MAyo Clinic in a month for another MRI. If it was not radiated in that area then will go to a clinical trial of Avastin and a combination of another drug. The only thing is the other drug could be the real thing or a placebo, but we would still be on Avastin which was the original plan.
    So we are waiting for the results from the e-conference to see which way to proceed.
    We are keeping our fingers crossed and hope the good lord hears our prayers.
    Mayo Clinic is also requesting a tissue from the tumor. They want to do a MGMT test. I don't understand completely but will try to explain the best I can. Apparently some people have a genetic tendency to react better to certain treatments. if he tests positive to the genetic link, the prognosis is better because the chemo will work better on him. We hope for good results on this test as well
    We feel really good about getting the second opinion. These people are specialists in there field and feel they are definately on top of the game with brain tumors and gave us more information to be optimistic about.
    So we will say our prayers and hope we get good results tomorrow.
    barb
  • meaganandshane
    meaganandshane Member Posts: 10
    GBM Stage 4
    Gday from Australia,

    My husband (34 years of age) was originally diagnosed with stage 3 Anaplastic Oligod astrocytoma on April 5th 2011. He had surgery on the 8th April, they removed 7cm by 5cm from the right tempral to the occipital lobe. The neurosurgeon could not tell if she fully excised the tumor. 1 week later they diagnosed him with stage 3 brain cancer. 3 weeks after surgery my husband started 6 weeks of full brain radiation. Whilst having radiation they recommended an MRI, the MRI come back not very favourably the tumor had grown back to it's original size. They stared my husband on chemo (Temodal - 400mg 5 days on, 3 weeks off) on top of radiation. They upgraded him to stage 4 GBM as it was growing so aggressively. 6 weeks later we had another MRI, this was a bit more favourably for us as the tumor had now stopped growing. My husband is on round 9 of chemo and the tumor is still stablized with small changes. He is doing remarkably well. He gets quite tired but on the plus side of things he doesn't have as many seizures as he used to (he is taking keppra 2000mg a day). If you were to look at him you would not think that he had this horrible disease. My husband has a very positive outlook even though we know that their is no cure. We hope and pray for this everyday. My husband has written a song to me, he wrote this to me after he was diagnosed. In doing this I feel that he has given me a part of him he has touched many hearts I hope to share our story with you. I hope all of your loved ones are doing well. I hope to read positive outcomes from you all. xoxoxo

    You can view my husbands song on youtube called Shane Latham Take my hand it has pictures of our family and we have also posted a MRI of his brain tumor.

    Here is the link -
  • sadinholland
    sadinholland Member Posts: 248

    GBM Stage 4
    Gday from Australia,

    My husband (34 years of age) was originally diagnosed with stage 3 Anaplastic Oligod astrocytoma on April 5th 2011. He had surgery on the 8th April, they removed 7cm by 5cm from the right tempral to the occipital lobe. The neurosurgeon could not tell if she fully excised the tumor. 1 week later they diagnosed him with stage 3 brain cancer. 3 weeks after surgery my husband started 6 weeks of full brain radiation. Whilst having radiation they recommended an MRI, the MRI come back not very favourably the tumor had grown back to it's original size. They stared my husband on chemo (Temodal - 400mg 5 days on, 3 weeks off) on top of radiation. They upgraded him to stage 4 GBM as it was growing so aggressively. 6 weeks later we had another MRI, this was a bit more favourably for us as the tumor had now stopped growing. My husband is on round 9 of chemo and the tumor is still stablized with small changes. He is doing remarkably well. He gets quite tired but on the plus side of things he doesn't have as many seizures as he used to (he is taking keppra 2000mg a day). If you were to look at him you would not think that he had this horrible disease. My husband has a very positive outlook even though we know that their is no cure. We hope and pray for this everyday. My husband has written a song to me, he wrote this to me after he was diagnosed. In doing this I feel that he has given me a part of him he has touched many hearts I hope to share our story with you. I hope all of your loved ones are doing well. I hope to read positive outcomes from you all. xoxoxo

    You can view my husbands song on youtube called Shane Latham Take my hand it has pictures of our family and we have also posted a MRI of his brain tumor.

    Here is the link -

    meaganandshane
    What a beautiful song and wonderful video. Very touching. You have a beautiful family. I will be praying for Shane and your entire family.
  • 4theloveofmysis
    4theloveofmysis Member Posts: 248

    GBM Stage 4
    Gday from Australia,

    My husband (34 years of age) was originally diagnosed with stage 3 Anaplastic Oligod astrocytoma on April 5th 2011. He had surgery on the 8th April, they removed 7cm by 5cm from the right tempral to the occipital lobe. The neurosurgeon could not tell if she fully excised the tumor. 1 week later they diagnosed him with stage 3 brain cancer. 3 weeks after surgery my husband started 6 weeks of full brain radiation. Whilst having radiation they recommended an MRI, the MRI come back not very favourably the tumor had grown back to it's original size. They stared my husband on chemo (Temodal - 400mg 5 days on, 3 weeks off) on top of radiation. They upgraded him to stage 4 GBM as it was growing so aggressively. 6 weeks later we had another MRI, this was a bit more favourably for us as the tumor had now stopped growing. My husband is on round 9 of chemo and the tumor is still stablized with small changes. He is doing remarkably well. He gets quite tired but on the plus side of things he doesn't have as many seizures as he used to (he is taking keppra 2000mg a day). If you were to look at him you would not think that he had this horrible disease. My husband has a very positive outlook even though we know that their is no cure. We hope and pray for this everyday. My husband has written a song to me, he wrote this to me after he was diagnosed. In doing this I feel that he has given me a part of him he has touched many hearts I hope to share our story with you. I hope all of your loved ones are doing well. I hope to read positive outcomes from you all. xoxoxo

    You can view my husbands song on youtube called Shane Latham Take my hand it has pictures of our family and we have also posted a MRI of his brain tumor.

    Here is the link -

    your song
    Your song is beautiful...I listened to it today on the one year annv. of the day I hear the doctor tell my sister those horrible words you have a brain tumor...
  • barbn
    barbn Member Posts: 33

    your song
    Your song is beautiful...I listened to it today on the one year annv. of the day I hear the doctor tell my sister those horrible words you have a brain tumor...

    Your song is beautiful and your family is too. Wish is all the best. Keep being optimistic.
    WE received good news from mayo clinic. the radation has shown the spots on the MRI are necrosis (dead cells from the radiation) not tumors. YEA! Feels so good to finally hear good news. Nothing is 100% sure, cause the MRI is fuzzy but the Dr. from Mayo feels since the radiation was done around the surrounding area where they thought might be new tumors, it was dead cells. He feels my husband is doing well and it just grew too fast for new ones.
    He will now stay on Temodaor 5days on 23 days off and go back for an MRI in a month and hope it stays the same or gets better.
    Dr. Buckner informed us he has a patients, one specifically with GBM IV on his 20th year, some 8-10, some
    3-4 and also the bad news of only couple months.
    We found him very encouraging, and very optimistic. He explained there are so many new researches going on. JUST KEEP THE FAITH>
    DON"T GIVE UP.
  • barbn
    barbn Member Posts: 33

    your song
    Your song is beautiful...I listened to it today on the one year annv. of the day I hear the doctor tell my sister those horrible words you have a brain tumor...

    Your song is beautiful and your family is too. Wish is all the best. Keep being optimistic.
    WE received good news from mayo clinic. the radation has shown the spots on the MRI are necrosis (dead cells from the radiation) not tumors. YEA! Feels so good to finally hear good news. Nothing is 100% sure, cause the MRI is fuzzy but the Dr. from Mayo feels since the radiation was done around the surrounding area where they thought might be new tumors, it was dead cells. He feels my husband is doing well and it just grew too fast for new ones.
    He will now stay on Temodaor 5days on 23 days off and go back for an MRI in a month and hope it stays the same or gets better.
    Dr. Buckner informed us he has a patients, one specifically with GBM IV on his 20th year, some 8-10, some
    3-4 and also the bad news of only couple months.
    We found him very encouraging, and very optimistic. He explained there are so many new researches going on. JUST KEEP THE FAITH>
    DON"T GIVE UP.
  • GBM stage IV
    My husband was also diagnosed with Stage IV GBM late last year. We have read 'Surviving Terminal Cancer' by Ben A. Williams and it has given us not only invaluable information but we have HOPE. We intend to be assertive and increase our knowledge in the days/ weeks to come. We feel fortunate to have an oncologist we feel will support us in developing our own treatment strategy. Our thoughts and prayers go out to you.
  • meaganandshane
    meaganandshane Member Posts: 10
    barbn said:

    Your song is beautiful and your family is too. Wish is all the best. Keep being optimistic.
    WE received good news from mayo clinic. the radation has shown the spots on the MRI are necrosis (dead cells from the radiation) not tumors. YEA! Feels so good to finally hear good news. Nothing is 100% sure, cause the MRI is fuzzy but the Dr. from Mayo feels since the radiation was done around the surrounding area where they thought might be new tumors, it was dead cells. He feels my husband is doing well and it just grew too fast for new ones.
    He will now stay on Temodaor 5days on 23 days off and go back for an MRI in a month and hope it stays the same or gets better.
    Dr. Buckner informed us he has a patients, one specifically with GBM IV on his 20th year, some 8-10, some
    3-4 and also the bad news of only couple months.
    We found him very encouraging, and very optimistic. He explained there are so many new researches going on. JUST KEEP THE FAITH>
    DON"T GIVE UP.

    Thank you
    Thank you for your kind wishes. I am glad that you liked the song. Shane has been doing a lot of writing and singing since he can no longer work, I am hoping to get some more work on youtube soon. Shane occupation used to be a truck driver. I am not sure about the laws in the USA but Australians are not allowed to drive any vehicle for two years after having a seizure even if you are on medication. Shane had a major seizure 1 months ago so I guess we are looking towards the year 2014.

    I am so happy that you got good news. It feels great, you start to have appreciations for the small wins in life.

    Shane goes for his MRI in 5 weeks time, don't you hate the waiting around for the results of MRI's. Shane and I get so worked up a week before the results. I think that this is the only time that we get very frustrated and stressed out, other times we are ok and we do what they tell you to do which is "learning to live with cancer".

    I am glad to hear that GBM patients are making it past the dreaded 1 year mark. I hope Shane can reach the 20 years and beyond. It does feel very encouraging. I have just told Shane and he feels quite hopeful.

    Again good luck for the MRI results my prays go out to you and your family
  • meaganandshane
    meaganandshane Member Posts: 10

    GBM stage IV
    My husband was also diagnosed with Stage IV GBM late last year. We have read 'Surviving Terminal Cancer' by Ben A. Williams and it has given us not only invaluable information but we have HOPE. We intend to be assertive and increase our knowledge in the days/ weeks to come. We feel fortunate to have an oncologist we feel will support us in developing our own treatment strategy. Our thoughts and prayers go out to you.

    Trusting4truth
    I am now going to look up that book that you recommended. I think anything positive or uplifting is always a good thing, and at times like this we need all of the "HOPE' we can get. I am glad you have a great oncologist, our oncologist is very good as well but it feels at times that he distances himself away from us. I guess he has seen alot of patients in his time.

    Our thoughts and prays go out to you and your family as well. Take care.
  • meaganandshane
    meaganandshane Member Posts: 10

    your song
    Your song is beautiful...I listened to it today on the one year annv. of the day I hear the doctor tell my sister those horrible words you have a brain tumor...

    4theloveofmysis
    Thank you for your kind words. I am so glad it is touching some many hearts. Shane is normally very shy but I guess this is his way of expressing himself.

    You are right with the doctors telling those horrible words I remember them so clearly, our Dr started off with "I am glad you brought your wife with you I am afraid it is bad news" the Dr pauses at this moment and I have to be the one that gets him to talk again I ask him trough tears at this stage as I now know that it is bad news. The Dr again speaks and he tells us the dreaded news that my husband has a Brain Tumor. I was thinking other things I thought that he had a mild stroke or a mild heart attack never did I think that he would tell us that he had cancer let alone a brain tumor. I have never heard of anyone who had this type of cancer except Dr Green on ER!!!!!!!

    Thank you again for your kind words. My prays go out to you and your family.
  • meaganandshane
    meaganandshane Member Posts: 10

    meaganandshane
    What a beautiful song and wonderful video. Very touching. You have a beautiful family. I will be praying for Shane and your entire family.

    Sadinholland
    Thank you for your kind words. We wanted to share this with other people, well I wanted to share this with other people as I am so proud of Shane. Shane has gone through hell and back but he still keeps his spirits high and he is always hopeful. I guess through song writing this is how Shane is expressing himself with "living with cancer" it also keeps him busy plus we get to hear his fabulous music.

    I will also say a pray for you and your family.
  • 4theloveofmysis
    4theloveofmysis Member Posts: 248

    4theloveofmysis
    Thank you for your kind words. I am so glad it is touching some many hearts. Shane is normally very shy but I guess this is his way of expressing himself.

    You are right with the doctors telling those horrible words I remember them so clearly, our Dr started off with "I am glad you brought your wife with you I am afraid it is bad news" the Dr pauses at this moment and I have to be the one that gets him to talk again I ask him trough tears at this stage as I now know that it is bad news. The Dr again speaks and he tells us the dreaded news that my husband has a Brain Tumor. I was thinking other things I thought that he had a mild stroke or a mild heart attack never did I think that he would tell us that he had cancer let alone a brain tumor. I have never heard of anyone who had this type of cancer except Dr Green on ER!!!!!!!

    Thank you again for your kind words. My prays go out to you and your family.

    your song
    Your song brought tears to my eyes. I was having such a hard time dealing with getting through the day,and when I went to sleep there my sister was in my dream.She was so beautiful. She got up and sang a song. Now my sister would never get up and sing in a croud of people or even one person for that matter. But listining to your song trigger that dream for me...
    I wish your husband well, and that his song writing and singing brings him some peace in this horrible nightmare.Be strong the road you are on is a hard one. I awoke every morning thinking I was waking up only to find a was still living in that nightmare.
  • DenisW
    DenisW Member Posts: 1

    Hi, Barbn
    Hello, Barbn.

    Welcome to CSN! I'm very sorry to hear that your husband is battling GBM and that you have a reason to be visiting this site; however, it's a great place to find support, understanding, and encouragement. I check this site every day, several times a day. I also visited your caring bridges blogspot and I looked at the pictures of you and your husband and your beautiful daughter. I could see the love and the togetherness in your pictures, especially the hospital picture with the three of you in the Green Bay Packers colors. Made me smile! Having a tight, loving, supportive circle of family and friends makes a huge difference and I'm so glad that you have that blessing.

    I don't know very much about GBMs. My 28 year old son is fighting a recurrent anaplastic oligdendroglioma. But I wanted to share two websites that I liked and thought might encourage you too.

    Here's one: http://www.virtualtrials.com/survive.cfm There are some pretty impressive stories on this site! I visit this occasionally when I need an extra boost of encouragement.

    Here's another couple and their site that I really love:
    http://livingwithbraincancer.com/default.aspx

    This man and his wife are really good about keeping their site updated so you don't have to wonder what is going on and if Ted is still okay. They are very proactive about treatments and they post new information and links to other websites. They have a positive, encouraging, hopeful outlook that I really love.

    I don't know any real technical things to tell you, but I'd like to share something that I found out while on this road with my son. We have been in this battle since his original diagnosis in May of 2009. I've learned that it is a real roller coaster of a ride. One day things can look really, really bad, and then the next day, there can be some amazing improvements. We had a physical therapist tell us that David's recovery would be like the weather here in Oregon. One day it can be sunny and warm and bright, and then the next day it can be cloudy and gloomy and oppressive. But just because one day is rainy doesn't mean that the next day won't be sunny again. She was talking about physical therapy but it really applies to the whole cancer situation. I have had days when things have looked so bad, and then the very next day, we've gotten incredibly good news. There's been times when I have been terrified by David's situation, and the next day he is so much improved that I have trouble believing it. I try to take it one day at a time, but when things are really hard, I remind myself that tomorrow could very likely be much better. We are in a rough spot right now, so I guess I need to read this post to myself too! :)

    I will be thinking about you and your husband and praying for you guys. Please keep us updated here on CSN. Hoping and expecting good news on February 10th!

    Love and blessings,
    Cindy in Salem, OR

    Hi Cindy,    I know this blog

    Hi Cindy,    I know this blog is rather old but I wanted you to know I found your recommended websites helpful.  There are so many cancer sites it gets overwelming!  I was diagnosed with oligodendroglioma and astrocytoma in Dec./14.   I have had surgery, radiation and will have chemo next month.  In the last two years they have discovered that if you have certain mutated cancer lines, an old type of chemo (PCV) is quite successful.  Has your son had chromosome testing?   If he has deleted chromosome arms 1p and 19q by FISH and /or was positive for idh-1 mutation by immunoshistochemistry it dramatically changes his prognosis (median survival to 14.7).  It was hard tracking down this data but one was www.virtualtrials.com/trial_results_-_Oligodendroglioma & Oligoastrocytoma. The other reference is :   2012 American Society of Clinical Oncology  van den Bent et al,   Journal of Clinical Oncology.  If you can't find these I would be glad to fax them.   I hope your son is doing okay and that you are in a period of calm.   I see you also live is Salem!  

    Best wishes,

     

    Denis Williamson also in Salem, OR

    [email protected],   503-364-0700   I prefer talking to emails in case you're the same.

     

     

  • sadinholland
    sadinholland Member Posts: 248
    DenisW said:

    Hi Cindy,    I know this blog

    Hi Cindy,    I know this blog is rather old but I wanted you to know I found your recommended websites helpful.  There are so many cancer sites it gets overwelming!  I was diagnosed with oligodendroglioma and astrocytoma in Dec./14.   I have had surgery, radiation and will have chemo next month.  In the last two years they have discovered that if you have certain mutated cancer lines, an old type of chemo (PCV) is quite successful.  Has your son had chromosome testing?   If he has deleted chromosome arms 1p and 19q by FISH and /or was positive for idh-1 mutation by immunoshistochemistry it dramatically changes his prognosis (median survival to 14.7).  It was hard tracking down this data but one was www.virtualtrials.com/trial_results_-_Oligodendroglioma & Oligoastrocytoma. The other reference is :   2012 American Society of Clinical Oncology  van den Bent et al,   Journal of Clinical Oncology.  If you can't find these I would be glad to fax them.   I hope your son is doing okay and that you are in a period of calm.   I see you also live is Salem!  

    Best wishes,

     

    Denis Williamson also in Salem, OR

    [email protected],   503-364-0700   I prefer talking to emails in case you're the same.

     

     

    Anaplastic Olio Grade 3

    Hello DenisW,

    I wanted to respond to your post. Cindysuetoyou's son passed on October 15, 2012. I remember waking up that day feeling like something happened to him. I only knew Cindy through her many educating post regarding her son. She was kind to share her information here on this site as it helped so many of us that were here during this time. She was always so thoughtful and posted to our comments regarding our loved ones as well. I learned a lot from her and she took very good care of her son.

    My husband has been fighting an anaplastic oligodendroglioma sinc 2010. He has been through many chemos, radiation, gamma knife, and more radiation. Originally, in 2010, he had a complete resection, temodar, radiation, then maintenence chemo. After recurrence in 2011, other chemos, gamma knifemore radiation,etc was tried. He is now on Avastin. He has 1 deletion. I often hear if you have both deletions your chances are much better. This site doesn't seem to be used as much as it was in 2010 for Olios. Try Inspire.com, there are many post you can view regarding treatments, experiences, etc that are more up to date than this site. I did learn from the post on this site from 2010 to 2014 but not so much anymore. The doctor gave my husband a 3 year diagnosis, and it's been 5 years. I am feeling blessed that he is still with us!God bless you as you fight this fight. Never give up! Keep a positive attitude, and remember God is in control! God Bless!