Guest Book

This page is provided for visitors to leave comments about the site and the subject of brain tumors in general. Please provide your name, city and country in addition to your comment but remember anything you write will be seen by other visitors to this site. Do not leave addresses, phone numbers etc. in your comment if you don’t want the whole world knowing them. The e-mail address in the comment form will not appear in the final comment, and I can assure you that I’ll never give it to anyone else. However, if you wish to contact me privately use the link provided.

51 Responses to Guest Book

  1. ARTHUR DEVILLE says:

    Dear Sir
    My name is Arthur Deville. My son, who is now 32 was diagnosed with glioma grade 5 in December 2003. He has 3 children and we all live near London, England. We were not given much hope here in England, in fact we were told that he would only make 3 to 6 months. We were told that he could only be given radiation and chemo as a last resort. Well, he’s my son and I was not going to give up so I contacted many people in America and was given hope. To cut a long story short, we went to the Cancer Research Hospital in Orlando, FL. We are under a doctor called Dr Nick (thats short for a greek name thats to long to pronouce.) Any way, he is brilliant. We had radiation and temodar together. That was two years ago and we are dues to go back out to Florida on the 28th of January to see Dr Nick again. Kevin finished his last Temodar in October 2005 so now we have to wait and see if this thing is going to stay away. At the moment there is no sign of the tumor so we are going to keep our fingers crossed. Thank you for your time. I hope to hear from you soon.
    Arthur/Kevin Deville.

  2. Brian Goheen says:

    I read your story and so happy for you and your family. My partner is in his 5 year with the same tumor. I’m speechless. Can’t find the words. God Bless you. Brian

  3. Bob Tucker says:

    Iwas diagnosed in Dec/2000, have had two craniotamy surguries, as well as temodal/radiation treatment. MRI’s are currently stable, with no new growth. I was 52 when diagnosed and am mow 58, I too, feel very lucky, and I am grateful for the support and love of family and friends, every day is a new day.

  4. jennifer says:

    hi, my name is jennifer, im from Ireland,
    i have just read your story and first of all CONGRATULATIONS!!
    my dad on monday was diognosed with a glioblastoma multiforme, and i felt like all the information i was reading was full of doom and gloom, until i read your story, it has just given me hope that my dad will be as healthy as you in 9years time!! he is starting chemo (tablet form) and radiation in two weeks for six weeks, so all we can do is wait and hope that he will be able to make to tumor reduce in size!! fingers crossed.

    so i really just wanted to say thanks for your story and it really gave me hope.

    congratulations again!!!

  5. fifi says:

    Hi
    I want to thank you so much for putting this website for people that are diagnosed and for the care giveres. I am taking care of my mother who is diagnosed of brain tumor (Lymphoma). Thought your diagnosis is not the same as my moms it, after reading your beautiful journey of life, it gave me so much hope and helped me not to give up. I could go on and on about my gratitude for your site and for giving me a peace of mind, at least for the time being and knowing that there is a chance. I wish you all the best and I hope my moms will be like one of yours. Thank you again!!!!

  6. sharla says:

    you are so very lucky. god bless that you survived this. our family was not so lucky, my brother was diagnoised first of april with secondary brain tumors. he passed away on september 22, he was 47. this was just devasting to our family. we can’t accept that he is gone. god meant for you to stay around to take care of your family. my brother married 4 years ago, and has no children. his nieces and nephews were his children, he is going to be so missed. again congrats on your recovery and appreciate every day you have with your family. take care sharla

  7. sharla says:

    i would like to know how to get to chat with people that lost love ones to brain tumor cancers. is just lost my 47 year old brother, and would like to chat with others that are going thru grief. thanks

  8. Bob Van Goethem says:

    Just wanted to let you know that you are inspiration to me right now. I have just started treatment for my Class IV GBM in London, ON. I am from the Chatham area and plan on an all out war on this disease. I am only 28 years old with my wife and two kids. I feel that this is complete BS and that with solid treatment, and healthy diet, a strong will with lots of support, and my faith in God that we will percerviere over this matter. Take care of yourself and Thank You!

  9. Bruce Hankins says:

    Your story give me hope. A good friend of mine has just started this journey. I am hoping for a good result. Your experience gives me hope.

    Bruce Hankins
    Batesville, Arkansas

  10. Brandon Do says:

    Hey! I’m glad I found your page and congradulations for surviving! My girlfriend Shelley has been diagnosed with GBM in August with stage 2, she now has stage IV, she is going with radiation treatment with temodar. Do you have any other suggestions? The doctors said that when the GBM shrinks they will try to surgically remove it, but my gf tells me the actual tumor itself is inside the brain. I love her so much as everyone else who is having to go through a hard time with their loved ones. Please, any help would be grateful, and God bless you, keep fighting.

    Sincerely,
    Brandon & Shelley

    P.S
    If you have AIM please let me know or email me back, thank you!

  11. Eileen says:

    May God always bless you and keep you healthy. Your story is an inspiration to all and for all going through this horrible disease. I wish you all the best. I hope our outcome will be as inspirational as yours. Again, God bless you.

  12. Judy Banks says:

    My daughter has sent me your address to read about your Brain Tumour. I too have Brain Tumour IV and received surgery in February 2005. After my six weeks of radiation and chemo (Temodal), I was sent home given six to 18 months to live. Obviously I am a couple of months beyond this.

    I return to the oncology department once a month. I go 23 days off and 5 days on the Temodal. I am told I have to stay on the Temodal as long as I live. After the surgery a small piece of the tumour remained and I receive an MRI every two months. To date, the tumour has never increased. As I have already lived approximately 4 months beyond what was expected, I have hope for even a few more years. I am 59 years old and am totally in love with a couple of new grandchildren.

    However, I should let you know that should I die over the next few months, I am definitely ready to meet my Lord.

  13. T Stallard says:

    My luck, nad in a funny way a blessing happened last year. A simple time line was. Jan 06 daughter had open heart surgery, April 06 same daughter had corneal transplant and the final straw I woke up post surgery for glioblastoma on my first day of employment. I took the opportunity to share how all this is a blessing.

    I took time to assure my will was done and I took time to take the treatments.

    God Bless all of you and continue to talk and share

    tim

  14. Jan Jones says:

    Thank you for sharing your own journey with this disease. My mom was diagnosed with GBM stage 4 in late May. She has had surgery (complete resection of the tumor) radiation/temodar and after 3 additional rounds of temodar her MRI showed a possible slight growth. Her neurooncologist has started her on CPT-11 and Avastin. We are grateful for websites like yours that share experiences and deliver hope. May God continue to bless you with clean MRI’s!
    Jan

  15. Kathy Vickers says:

    I was reading your entry from last November. Yes there are people out there reading your site. In fact I found it because someone on one of the brain tumor lists quoted the part you wrote about questioning your pathology. (She didn’t give your name, just said you were a 9 1/2 year survivor.)

    Both my father and my brother had/have GBM4. Your site gives people like us hope.

    Kathy

  16. tami says:

    this article is helpful in many ways in understanding about what my uncle is going through and also helps me to understand on what to expect throughout his ordeal. all we have to do is pray for his recovery may god bless each and everyone of you that has the same thing

  17. Paula says:

    January 21, 2007
    My husband was diagnosed with GBM on December 13, 2006. Since then, he has been receiving both radiation and Temodar. We are holding our breath, hoping it works. His tumor was inoperable, in the right hemisphere of his brain, about the size of a lemon. He is profoundly weak on his left side, similar to a stroke. He is able to walk with a lot of assistance, and the comment you made about when you initially fell, and could feel your leg, but it was somewhere “out there”, seems to be exactly the way my husband’s leg and arm feel. He can push/pull with his arm, but it’s useless for support. I am trying to do some physical therapy when he is up to it, but currently he is just so very tired from the radiation treatments, and the therapy is sporadic. He’s also dealing with his dad’s terminal illness, and I fear it may hinder his recovery. Your web page has given me a real sense of hope. Thank you so much for sharing your experience!! May God richly bless you, and may you continue to live a long, healthy life!

  18. Carolyn says:

    Your web site has truly re-inspired me. My husband was diagnosed in July of 2006. At first the pathology was Astrocytoma WHO Grade 2-3, non-operable in the left temporal paritel lobe. However, we went to UCLA to meet with a Neuro Surgeon who concurred with the above. We then went to UCSF Dr. Prados (Neuro Onc) and Dr. Mitchell McDermott (Neuro Surg) whom immediately told us that “Not to have Surgery was not an option” furthermore, they were certain that this was GBM not Astrocytoma. Surgery to removal the tumor was performed August 2006 diagnosis: GBM. Subsequently my husband underwent radiation treatment and 42 day cycle of Temodar plus three adjunct cycles of Temodar. Currently MRI studies show profound radiation effect (Necrotic tissue and edema) There was question whether this was radiation effect or tumor progression so a PET Scan of the brain was performed, results: Negative for malignant activity. We are still going through the journey, but I feel certain that my husband has true fighting chance to beat this. God has blessed us as He has you and so many others, we just pray for continued blessings and good news.
    Thank You,
    Carolyn

  19. Kathy says:

    My sister was told in May of 2006 she had GBM Stage4, could not be operated on. She has done chemo radiation and tremodar. She is now on the chemo once a month. Currently she is not able to stand her legs won’t hold her. She has not gone to the bathroom in 5 days. Has anyone seen this?

  20. Matthew Fullerton (gbm dx: 1987) says:

    dude! Keep On Keeping On!!

  21. donnafrancis says:

    My name is Donna and I am a very real person in desperate need to save the life of my mother who was diagnose with GBm 4 in Mya 2006 . we as family have struggleg to keep her alive for many months and my Mother has fought the good fight . She is my dear heart , the mother of 4, and has went from completely paralized to walking and taling again in the last 9 mothns > we have has her treated by Slaon Kettering hospital by the top nuro surgeoon the world and all of her follwwing tratments have been through Duke University where she did very well by thir staff She tolerated the chemo extremly well amd until a few weks ago had no recurrance,,, Unfortuntely she has now has had a recurrance and has been given the chemothraputic agnt ccnu, and doesnt seem to have much hope on its owm I know you have been a through struggle and we are turning anynwhere to keep our mother with us and to recived any legitamate advice from one who has survived this. i ahve been up day and night, fearing the worse.

  22. michelle says:

    Thanks for the inspiring site. I was diagnosed in Jan 07 at age 41, after having 3 seizures on holiday, with my husband and sons age 11 and 8, I was flown (due to remoteness of the holiday spot) to the hospital Emergency Dept, where I work part time. Initially CT showed an irregularity in the back of the right frontal lobe. MRI scan came back as a tumour, thought to be meningioma due to its postion. Craniotomy 2/2/07. Approx 2 weeks later diagnosis grade 4 GBM.
    Due to start radiotherapy and chemo (temozolomide) tomorrow)
    Had been imagining the tumour all gone and the remaining cells blasted and turned to ashes by chemo/radio. Now, thanks to your site I realise this will be reality. 10 years or more, here I come!
    I am working part time at the local medical centre as a nurse 3 days a week, but I am not gong to the Emergency Dept as I am not allowed to drive.
    Finding a bit of a chore asking people for rides here and there for myself and the boys, but I am getting used to it.
    Any info or things that helped you would be appreciated
    All the best for the next 10 years!
    michelle -New Zealand

  23. Jo - Milton Keynes UK says:

    I am really pleased that I found your site, your story is an inspiration to us all.

    My husband is 41 and was diagnosed with a grade 4 Glioblastoma in June 2006, he was given a prognosis of 6-9 months, next week will be ten months and we look at every day we have together as a bonus.

    I set up a blog telling our story to keep our friends up to date with what is going on and to try and cut down the amount of phone calls we get so I don’t have to keep repeating the same information. I can’t believe how popular it has become and now I use it as a “therapy” for me to express my feelings about the terrible journey that we are taking together.

    If you are interested my blog address is http://allthekerrs.blogspot.com

  24. Pam says:

    This is the best thing I have heard in weeks. April 11, 2007 I was told I had Glioblastoma multiforme 4. I was so alarmed by ths as the only systom I was having was vomiting in the morning first thing yellow bile. No headache With some drop in blood pressure.

    I had went to my GI dr who did some testing and order a catscan last resort I would thing. And it showed some thing in the head.

    Nothing showed in the blood work, I had MRI a three hour MRI of most organs, and it was unclear to the neuro. so he set up a biopsy and it showed Glioblastoma multiforme. I am going to Dana Farbra instutute in Boston sometime this week. Is there any information you can give to me or help support or what ever it maybe please email

    I am happy for you and hope something good comes my way. I have two children 19 and 17

    Thank you Pam

  25. KRISTINA DEGEN says:

    Dear John, First of all, it is a great news, that your heath is back to normal. Thank you for writing it down. This gives me hope for a person I know, that she might be lucky like you are. I wish you and your family all the best, from the Lake Zurich, Switzerland on a sunny and windy springday,
    Kristina Degen

  26. Michael (age 30-Australia) says:

    Good on you John for being a fighter to this terrible disease.

    I have had 3 operations, 30 sets of Radiotherapy and Chemothereapy (BCNU) 4 sets on six week interval.

    I am currently stable since first being diagnosed in November 2003 with Ganglioglioma Low grade tumor. Since then it came back 1 1/2 years ago as a Astrocytoma Medium to High grade.

    I know in the back of my mind that the next step would be that I remain stable, or the Tumor comes back as maybe a Glioblastoma multiforme.

    I just hope that i am one of the lucky ones like your self John.

    All the best mate

    Michael

  27. jodi says:

    John,
    Thank you so much for your story I read it every day . My fiance just got diagnosed with giant cell glioblastoma IV but his uncle had a oligodendroglioma tumor and I too wonder if he has been diagnosed wrong, we are seeking a second opinion now and he starts treatments in a week. They removed the tumor with no problems and he says he feels great no loss of movement or seizures to date. We pray every day and have alot of support through family and friends. We are going to be long term survivors also just like you….Congradulations and God Bless to you and your family.
    Thank you again for your inspiration
    Jodi

  28. Jennifer says:

    Just wanted to say you are very lucky and it probably wasnt a gioblastoma. My brother is 30 yrs old and has an anaplastic astrocytoma. He has less than a month left. Doctors gave up. I know a gioblastoma is a little worse than an astrocytoma so you were probably misdiagnosed…but anywho…you survived a brain tumor…good for you. I wish my brother had a miracle happen to him ๐Ÿ™ Right now he’s like a vegetal :'(

  29. Sharon says:

    My brother, only 44 had his brain surgery just yesterday and doctor said it was GBM. I’m not sure if my mother knows the prognosis yet….I’m sure my brother does. Our father is in England, but hopefully he will come. I lost my best friend of 28 years three years ago, my mother had a second stroke only a little over a month ago. Reading all of your stories and comments has truly touched my heart. I am not a religious person, but I truly believe it is all in God’s hands……it just hurts our hearts.

  30. Debbie Barkovic says:

    John, I am so very happy I found your site tonight. My daughter is 28 and unfortunately did not have major symptons, prior to being diagnosed with Glioblastoma multiforme 4. Her tumor grew very large and broke a blood vessel in her brain. Her brain filled with blood and she underwent emergency surgery at St. Mikes Hospital in Toronto. She too has just finished radiation and chemo at Princess Margaret under Dr. Mason. We are all still in total shock.
    Our paths sound so very similar and I thank you for sharing your intimate story. Be assured that it is most likely the anonymous good your site does that really counts the most. Thank you again!!

  31. Denise says:

    Dear John
    I have just read your story, and first of all Iam very pleased for you. my brother has just been told he has the same thing as you and i hope and pray he has the same good luck as you have. Stay strong and healthy and thank you for sharing your story and giving so many people hope. XX

  32. Trisha H says:

    Congratulations on your remarkable success!!!

    My mother finished her round of chemo/radiation at Princess Margaret Hopital with the same doctors you mentioned there. They said her latest MRI results are “fantastic” and she will be receiving an experimental drug to prevent regrowth.

    She did have the surgery at St. Michael’s with Dr. Perrin and he was able to remove most of it.

    We pray that she continues to do “fantastic” as Dr. LaPerriere stated, and beats the odds too!

    Her first seizure-like episode was on March 8, 2007. Her entire body would get a tremor … the colour would drain from her, she’d have goosebumps and her blood pressure would rise through the roof, and she would get chilled. After a few seconds she was back to her normal self. Her surgery was on August 8, exactly five months to the day of her first tremor. She never had anything more than that, and it took a couple months to get her MRI results because she was never rushed to the hospital for her symptoms. They would be over so fast that nobody could witness them unless she sat all day being observed!

    So now we just continue praying and living life every day to the fullest. Your story is truly inspirational and I hope we can make her a similar webpage one day too!

    God bless

  33. julie rizzo says:

    My brother is a six year brain tumor survivor. He was an F-18 pilot in the marine corps and was supposed to be in his jet at the time of his seizure. By a stroke of luck, his plane was unavailable and he is alive today. After the seizure he was diagnosed with a Grade 2 mixed glioma. He was operated at UCSF by the brilliant Mitchell Berger and has had clean MRI’s since. He is followed at the National Institute of Health in Bethesda, Maryland by a neuroncologist by the name of Howard Fine. This doctor recently told my brother there are some very, very promising clinical trials going on for Grade 4 (GBM’s).

    PLEASE ask your neuro-oncologists about these clinical trials at the National Institute of Health – National Cancer Institute, Dr. Howard Fine.

    Good luck to you all. Keep fighting…

  34. I just discovered this site. What remarkably stories. I hope and pray each of you are still fighting your battle and winning. I am taking care of my 74-year-old mother with a stage IV GBM tumor. It was located on her right side in a good area where she had little or no sign that is was there. It was over 5 cm and only her dizziness and confusion was noticed before an MRI revealed the tumor. She had surgery May 9, 2006 and took radiation treatments 30 times immediately afterwards. They placed the glio-wafers around the tumor site during the operation. We felt this has what has helped her survive this long, and prayer. She has been watched carefully since May, and this October the tumor started growing again. They tell us she only has 3 รขโ‚ฌโ€œ 5 months to live. She elected to take chemo, with CPT-11 and Avastin. It is a heavy-duty treatment and she has had two treatments so far. They claim this may help with the shrinkage some, but will not reduce it enough to give her quality of life, or much extension of life. She is living with me and we are enjoying her each day. This chemo seems to make her very fatigued. She is sleeping much of the day and night. This is better than some of the other side effects, we could be experiencing. The doctors tell you everything except the little details. I cannot seem to find anything to do with her. She just sits around all day. Nothing interests her anymore. She was reading books all the time and now does not enjoy them. I feel so helpless just watching her everyday. I was hoping someone would enlighten me as to what I should/could expect with her growing tumor. What are some of the next symptoms we will see with her growing tumor? I would like to be prepared for the next steps and plan around it. She has many loved ones and grandchildren who want to be with her and I cannot be sure what will happen next. Will she not recognize her family soon, will she become a different person? I would like to know others stories and how to deal with this dreadful disease. Faith and prayers get us through each day.

    Thank you for your time and God Bless

  35. sue says:

    John Ilast sent a message to you almost 7 years ago.So glad you are doing well.My husband was diagnosed with oligodendroglioma 2 in November 2000,hehad surgery and no other treatment and all was well until March 2007 when the nasty thing came back and the tumor is now doubling in size evey six months so we now feel it has changed to a more aggressive tumor and now have to deal with chemo and radiation.I guess we were very lucky to have had almost seven years of peace ,which is more than many brain tumor patients get to have. Anyway continued good luck to you.

  36. Lynne says:

    Mississauga, ON
    I’m so glad I found this site. It’s good to see that other people are going through/have gone through the same issues as we are. I am 46yrs old and was diagnosed with an grade 2 oligodendroglioma in Nov of 2006. It was a complete shock – a sudden major seizure out of the blue and then surgical remomal of the tumor at Trillium (by Dr Izukawa – a fantastic sugeon and wonderful man) on Friday the 13th of November (ironic!).
    I’m a patient at the Pencer clinic now under the care of Dr. Mason and I must say that so far I’m doing well – regular MRI’s, on the dilantin and keppra for the seizure control and yesterday (Wed 16 Jan 2008) I started the temozolomide chemo, 5 days on 23 days off.
    It’s all a bit scary; I suppose because it’s fear of the unknown but when I read and see the bravery of the patients and the patients’ families on this site and at the Pencer Clinic, I’m convinced that I am lucky to be able to get the treatment.
    I’ve found that the support of family and friends is absolutely vital and that, in conjunction with the support and treatments of our hospitals/clinics, we patients should do everything in our power to keep a positive attitude and keep fighting the disease. I realise that sometimes it is really hard to keep up a smiling face and a good attitude, but it is not only for our own sake, but for our loved ones too. Slowly but surely the treatments are getting better, less aggresive and somewhere out there is a clever scientist just waiting to solve the puzzle for us.

    All I can say is be positive, regularly tell your husbands/wives/children/mothers and fathers that you love them and be strong. I do this every day and you should try to too. Lynne

  37. Rachelle says:

    My husband was diagnosed with a GBM 4 in Mid Oct 2007, when I was 38wks pregnant with our son. Over the last few months we have experienced a lot and especially with the hormonal flux I’ve been in from delivery and all I find I’m going from extreme happiness to extreme depression in a matter of just hours of the day sometimes even. I found this site because I was desperatley looking for others who have SURVIVED!! (Or as we actually refer to it in our family – “kicked cancer’s ass”

    My husband and I learned of our problem when he fell in the middle of the street one day taking his lunch from Burger King to his office. He dropped his bag of food from one hand, picked it up confused, dropped it again, then dropped his drink from the opposite hand and then just fell completely at that point. In the middle of the road he crawled with what muscle control he had to the curb as his friend’s came back to help him out and stop traffic for him.

    Previous to this he was having severe headaches and nausea and his left eye was getting blurry on him. We blamed the first two on hormones from the pregnancy since with our first child he got the same symptoms but just not as severe. The last was confusing.

    We took him to our local Dr and he found nothing wrong with him and just blamed a new med he took 14 hours earlier for something else but set us up for an MRI “just in case.” THANK GOD!

    The MRI showed a baseball sized tumor in his brain and he was admitted immediately basically. Poor little MRI Dr was out of his mind he was so uncomfortable telling a 30 year old man what was in his head with his VERY pregnant wife sitting there wide eyed. He was sweet.

    My husband is only 30 years old, great health (active duty army soldier actually).

    Being Army we had several opinions to make sure everything was correct befor he ended up in Tubingen Hospital (we were stationed in Germany on top of all else). On Nov 7, 2007 he had surgery where there was a full resection I guess they call it. All of the mass was removed and he had NO side effects of this surgery and only occasional headaches from the swelling since that date.

    He has completed his radiation and chemo (with temodal) and is on his first round of temodal since. We get the results from the first MRI since treatment this monday.

    We are praying for good things like so many of you are here telling us is actually a possibility!! So many other sites are miserable with nothing but death for our end result. Thank you so much for telling your stories. It gives the rest of us such hope.

    Thank you guys

  38. Ann from UK says:

    Hello, we are in need of support from anyone who is a stage IV glioblastoma multiforme brain tumour. My brother was diagnosed three months ago at 54 years. Unfortunately the support in the UK has been very poor. It is always so depressing and dare anyone have any hope then the doctors are very quick to take it away from you. We are looking for someone who is a survivor just to offer support via telephone to my brother. Some one that has survived that offers a glimmer of hope in this dark time. We all need a little light to keep us going and soe we are looking for that light somewhere out there.

    Thanks everyone

  39. Wendy says:

    Hi John
    I have printed your story, and put it in our Patient handbook, given to us our first visit to the Pencer Brain Tumor center. I read it, re-read it and read it again. I have started to re-read it again..over and over.
    My husband, Steve, 44 diagnosed last June (07) with GBM IV. His tumor was de-bulked, the six week radiation and chemo treatment, followed by 5/23 chemo cycles. I’m sure you have kept up to date, knowing the chemo of choice is now Temezolomide. He was also in a study program At the start of the third cycle, the wonderful clinic nurses noticed Steve was short of breath, his heart was racing, his colour not good. He had developed Congestive Heart Failure. However, the good news after the first two cycles was the tumor had shrunk significantly…(the only type of shrinkage any man wants to talk about). They took him off the investigational drug….kept him on the chemo and after cycle five, his MRI showed tumor progression…50% of what was there three months ago. (although, I keep telling him 50% of very little, still in not that much) But enough that Dr. Mason changed his chemo to CCNU.
    I remembered you saying how violently ill you were on the first cycle. Steve was as well, his first cycle of Temezolomide. After that..he was fine. So on Friday, when Steve was to take those two greenish pills, i made sure his Dad was at our home, ready to help him out, if he needed. But….he’s not been sick. Of course that’s scared me, prompting calls to Dr. Mason’s office…’he’s not sick, he’s not sick..is it working?’ Wendy, it’s fine…calm down they say. I know how you reflected on that first cycle thinking perhaps there may have been a lot of anxiety and expectation of illness, and perhaps Steve being a veteran of chemo so far…he was without expectation.

    John, I’m so scared. Steve didn’t respond to the new wonder drug..Temodar, I just hope he responds to the old fashion stand by. He’s not been able to return to work, since the diagnosis. The steroid, and study drug, then heart medication have prevented this.

    We received word last week that Steve’s heart is doing much better…even some medication deletion which felt good…then whammm….the monster in his head is growing. A complete reversal to the first time’s good news. So lets hope…third time…lucky..heart/tumor all doing well. His spirits are feisty, he’s frustrated and angry, he’s scared and afraid. Probably the latter two he’d rather I not share with people….but I wish I could help.

    I pray so much John, every day, when i’m alone in the car, alone in the bathroom, alone at the washing machine…I’m even saying prayers while writing to you. We’ve not been a religious family…..a faithful I will say, and I believe God does hear, I just pray that Steve’s health is one He is willing to grant.

    Thank you for the updates…I like to read the progress, please keep us informed. Oh and on another “I feel a little connection to you note” the flowers that you were going to purchase that Valentines Day in 1997, were probably at one time in my warehouse. I work for an importer of fresh cut flowers, have since 1991. We more than likely distributed those flowers to the wholesaler, who would have supplied that retailer you were going to stop off at on Front Street. I still work here.

    Bless you and your family John, you are an inspirational miracle for me to hold onto

    Wendy Mendham, Steve’s wife

  40. Vanessa says:

    Hello, my Dad was diagnosed with a grade IV brain tumor in December 06 after having a seizure at the wheel of his lorry aged 58. We were told by the oncologist that the tumor was inoperable and we were not given much hope. After 6 weeks of intense radiotherapy the tumor had actually shrunk and stopped growing. It stayed in remission for around 11 months and my Dad had quite a good quality of life. A couple of months ago my dad started to feel unwell and his left hand side became very weak. He had a couple of very bad siezures which he has suffered quite often since diognosis and we have found the tumor has grown again quite significantly. He is currently back in hospital due to DVT and is now on 6 cycles of Chemotherapy. The prognosis for my Dad was not good but 15 months on he is not doing too bad and we are hoping the Chemo works as the radiotherapy did. I believe my Dad’s positive attitude and faith has helped him through this so far. It has been the worse 15 months of our life but we are determined with love, support and positive thinking we will fight this awful disease all the way.

    God bless to everyone out there who is also going through this. It helps to know your not the only one even though it does not make it any easier.

    Vanessa x

  41. Julie says:

    Hi John

    I wish your family health and happiness for the rest of your life. We live in the UK and my husband was orgionally diagnosed with a grade 3 oligodendroglioma in April 05 following 2 craniotomies, radio and chemo therapy he is still fighting despite it recently being reclassified to a grade IV gliosarcoma. We have a young family and we are certainly not ready to give up the fight either. I think the UK has finally been brought upto date with new developments as I have been told their is no advantage in taking my husband to the US or anywhere else as he will still be able to receive the latest treatments here too. Good for you for doing your own website. I hope life treats you well. My heart goes out to anyone in a similar situation.
    Julie

  42. Dora says:

    To John,
    and all the readers of this site,

    Please keep on fighting this terrible illness for yourself, your family and anybody whose life has been affected by GBM. Yesterday It was 2 weeks ago when I lost my Dad (66 yrs. old) to GBM Grade IV and I can’t tell you all how hard it hit us. His was a short battle: diagnosed on January 19, surgery on January 24, then 6 weeks of combined Temodal (140 mg.) and radiation. He was paralyzed on his right side after the surgey, but slowly it started to work, learned to walk with a walker, last MRI showed great results….still, the day we brought him home from the hospital he died. In my arms. He didn’t suffer, his brain just couldn’t take it any longer.

    I am not trying to bring everybody down, so please don’t get me wrong. I am just saying that every day is a gift with that person, who has GBM, you just never know what is around the corner. Open your eyes, smile, give a hug, say I love you.

    I am so happy for you, John, that you were strong enough to fight this.

    I wish you and your family all the best,

    Dora

  43. Berty says:

    I just discovered this site. What remarkably stories. I hope and pray each of you are still fighting your battle and winning. I am taking care of my 74-year-old mother with a stage IV GBM tumor. It was located on her right side in a good area where she had little or no sign that is was there. It was over 5 cm and only her dizziness and confusion was noticed before an MRI revealed the tumor. She had surgery May 9, 2006 and took radiation treatments 30 times immediately afterwards. They placed the glio-wafers around the tumor site during the operation. We felt this has what has helped her survive this long, and prayer. She has been watched carefully since May, and this October the tumor started growing again. They tell us she only has 3 to 5 months to live. She elected to take chemo, with CPT-11 and Avastin. It is a heavy-duty treatment and she has had two treatments so far. They claim this may help with the shrinkage some, but will not reduce it enough to give her quality of life, or much extension of life. She is living with me and we are enjoying her each day. This chemo seems to make her very fatigued. She is sleeping much of the day and night. This is better than some of the other side effects, we could be experiencing. The doctors tell you everything except the little details. I cannot seem to find anything to do with her. She just sits around all day. Nothing interests her anymore. She was reading books all the time and now does not enjoy them. I feel so helpless just watching her everyday. I was hoping someone would enlighten me as to what I should/could expect with her growing tumor. What are some of the next symptoms we will see with her growing tumor? I would like to be prepared for the next steps and plan around it. She has many loved ones and grandchildren who want to be with her and I cannot be sure what will happen next. Will she not recognize her family soon, will she become a different person? I would like to know others stories and how to deal with this dreadful disease. Faith and prayers get us through each day.

  44. Jasmine says:

    Thank you so very much for sharing your story.

  45. My story began fourteen months ago, I’am still in treatment, with mri’s every two months. my last mri showed somthing that was not in my favor, another sugery I’m told is the best way to go with glio wafers, have you any words of wisdom? Jeffrey !

  46. Keryn Gibson says:

    Hi John,
    My Aunt recommended I read your blog/website as it was one of those hopeful stories of survivorship that you often only read about.
    I am writing this comment from Toronto Western Hospital sitting at my dear Mum’s bedside. She too has Dr. Mark Bernstein as her neurosurgeon. My mum, Nancy, was diagnosed with advanced stage 4 renal cell carcinoma which had metastasized to her liver, lungs, lymph nodes and bone. The news was devastating. We got into a clinical trial at PMH and on Oct 20/11 she had a radical nephrectomy to remove her right kidney and a 17.5 cm tumor surrounding it. The chemotherapy drug Sutent followed however she was only able to take that for 3 days before severe side effects took us to the emergency dept. At Toronto General. A CT can was done and confirmed a brain met, the size of a golfball was bleeding and would require a craniotomy. To my amazement she recovered well after this surgery however it was a short lived amazement. She has now been back in hospital for the past three weeks with cranial spinal fluid (CSF) leaks, bacterial meningitis, cranial cathedar surgery to relieve the pressure in her head, and not one but two VP shunt operations. She is suffering from severe muscle atrophy and delirium/confusion which comes and goes.
    We are hoping to start whole brain radiation next week for 2 weeks of treatment as she has 2 other brain mets that need to be reduced before chemo can start again for the primary cancer mets in her lungs and liver.
    This has been the most unexpected and difficult journey for her and our entire family…but we continue to have hope. Lots of it. Stories like yours truly help me believe in the miracle of the human spirit and the mental requirements that it takes along with treatment to overcome this stupid disease and enjoy all that life has to give.
    Thank you for sharing your journey.
    All the best in health, love and life for many many more years to come.
    Sincerely,
    Keryn

  47. kamal bhatia says:

    Thank you john for buiding hope ,My father -in -law 77 years old was diagonosed with GBM grade -4 on 12th sep 2011 .since then our life was shattered he means alot to us his grandchildren his son .HE underwent surgery on17th sep and then radio and chemo alongside .after surgery there was mild reduction in size of tumor. it is still more than 5cm. He is bedridden has urinary incontinence off and on he is prone to some infection and has to be hospitalised.We are very worried doctors do not tell clearly .He is not in position to take any more chemo.The recent MRI shows almost same size of tumor though no oedema and reduction in haemmorrage we are getting treatment from PGIMER chandigarh India. Your stiory has revived my fight and kindled hope thank you you have lovely kids god bless them

  48. Dadirai says:

    My husband has aGbm grade 4 andthe doctors are clueless am in south africa

  49. ute victor says:

    My husband was diagnosed with stage 4 tumor. The tumor is called snuc. Cancer of the sinuses which grew up into the Brain. They removed most of the tumor through the nose. Had 30 radiation treatments and 6 chemo. Tomorrow first MRI scan to see if tumor has shrunk. We live in Cape Town South Africa. Who has out there the Snuc Tumor ? Would really like to talk about it.

  50. Tina says:

    Hi John,
    I discovered your story while looking up Dr. Richard Perrin. He is my neurosurgeon. I am 21 and an aspiring doctor if I can boldly say. I have a cranial giant cell bone tumour classified as a brain tumour pressuring my left temporal lobe, putting my vision and memory at risk. I was diagnosed 3 months ago and it has been non stop scans, assessments, and injections ever since. My first craniotomy was not successful, as they hit a vessel too close to my mass, causing me to lose a lot of blood. The second was cancelled, as they believe injections (denosumab) to harden/calcify the mass for safer extraction had to be done first. A week ago, I lost control of my left face and was put on anti inflammatory steroids to maybe ease a pinched nerve.

    Anyways, I just want to say that uncertainty and stress is really bad, as I thought I had my life all planned out. But I enjoyed reading your story and it motivates me to keep on living. With hair or not.

    I hope everyone stays positive and enjoys life, regardless of changes. Hey, if not for this illness, I would have never been able to see a new side to healthcare, and learned to cherish medicine even more.

    Cheers,
    Tina

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