August 28, 2003
An MRI taken in April 03 showed a little change that concerned the doctors but nothing to make them take immediate action. Another MRI was taken in June to see if anything had changed, it had not. Doctors concluded that the suspicious area must be scar tissue or necrosis caused by the radiation. Sheryl finished her last round of Temodar in August 03 and the next MRI is scheduled for September.
All is well!
Kevin Benton

January 15, 2003
Sheryl had an MRI on December 16, 2002 after completion of the 30 radiation treatments. The doctor's comments were "looks fantastic". No sign of anything trying to pop up. What a wonderful Christmas present! Still sticking with the 12 cycles of Temodar(350mg doses) along with Zofran. Next MRI is scheduled for April. Sheryl has been released from physical therapy and occupational therapy and is doing great.
Keep the faith!

October 28, 2002
She is now able to walk around for the most part without a cane and she is even able to pick up our son and hold him again. This is pretty amazing considering she could barely move her leg the day after her surgery and it was 4 days after surgery before she could move her arm at all. The prayers are working!

top of page

Oct 3, 2006
Just an update to let you know that I had an MRI on Sep 8 and Doctor appointment on Sep 11 and all is clear. No tumor that the pathogist nor the doctor can see. Thank God! I am not taking Temodar anymore. I have joined a support group in Fort Worth since I came to Texas and it is just great! The positive atmosphere and the comradery of the group is amazing and we lift each other up and felt good after each meeting. I am doing very well considering all the odds. Just wanted to let everyone know that I am still kicking.

Take care and God Bless!
Elmer V. Bryant

Jan 10, 2005
My family and I recently moved to Texas so we can be with family. Went to a new neuro-onclogist and got an MRI done and it came back normal and clear. Even though my walking is getting worse, I am tumor free. Praise God!

Please let me know how you're doing and keep in touch. I am still happy to receive new e-mail from people who went to YASG site and am glad to be able to help and give support to them.

Nov 26, 2003
Just got my MRI results and I am still clear! Thanks to God and all of your support and prayers. Walking and balance is not to good. Other than that I am just fine. Everyone have a Great Thanksgiving and God Bless you all

Had my latest MRI on Sept 30 and it is still clear. Had my usual Dr. Apts a week later and they are all pleased. Next MRI is in 2 Months. Coming up on 2 years since the 2 Tumors were found. Keeping up the prayers and positive attitude. God Bless all of you!!

Oct 9, 2003
Went to UCLA to See the Specialist and show them my latest MRI so they could compare it to the older MRI's. Still No change, all clear. They said that If I make it past 3 years then I am more than likely Free. So I got one more year. Keep praying for me.

Aug 7, 2003
Have been having some bad hart burn at night.. I stopped taking the Choral Calsium to see If It gets any better.

Aug 5, 2003
Had another MRI and it is still clear.

I had a MRI on Aug 4th [2003] and it is CLEAR.

top of page

December, 2005
Now I am doing well once again. I have another yearly appointment in October with my Philadelphia doctors.
Thank you to everyone who has emailed me.

I am pretty confident that I will continue to be a GBM survivor. Day to day life is hectic at times. I am trying to do different things to keep me active, mentally and sometimes physically. I have begun Portuguese lessons, piano lessons and still need to continue going to the gym.

However, I need to renew these things in the new year.
I actually got to do some walking near a place called Shelly Bay field in Bermuda. I hope my mom and I can go together as I need to start the gym again after my son's Christmas vacation from school.
I can't believe he's in his second year at a school here!

God bless you all.
Susan Davies

April 2004
Susie had another totally clear MRI in April 2004. She is feeling and looking great. She has had two minor issues in June 2004: the first was a bone infection which was subdued by a 6 week course of antibiotics.The second was the removal of one of the staples(for lack of a better word) which was protruding through her skin at the incision line. It was removed in Bermuda without a problem. This could have been the cause of the infection.

Summer 2003
Everything was fine and I am now having no chemotherapy!!! I just take my anti-seizure medication, Trileptal!! I am very pleased at how well everything has gone for me.

I was recently saddened to learn of the death of my brother’s fiancé who also had a GBM and was only 33. God help us all. I pray for new miracles for patients with cancer. She was so young.

It really comes home to me and I am thankful for the positive people who were around me and of course for the excellent treatments I received at HUP.

March 25, 2003
My MRI was brought up to Philadelphia and my doctor was very pleased with it!!! Whatever was there has now diminished!!! YIPPEE!!!! I believe it has a lot to do with your attitude and the chemo and the energy and prayers you receive from positive people. I am still on the CCNU chemotherapy and will have my next MRI in July!

Feb 9, 2003
My December MRI was not as good as we expected it to be. I now have a 2mm tumor in the same area. I am working on some visualisation exercises to help and they have changed my chemotherapy to Procarbazine which is not too bad. However, there are more restrictions on things that I am allowed to eat and drink. (No aged cheese,wine,yoghurt, acidic fruits (oranges, tomatoes...)and no tea!!) I take it for 2 weeks (3 X per day). I am also on an anti-nausea pill called Kytril which really constipates me. But as long as it all does the job, I don't care!!

My next MRI is in March. I may be able to get it done here as we now have an MRI machine here but I still need to take it up to my Doctor in Philadelphia as no one here knows how to interpret it yet. We'll see how that goes.

Sept 10, 2002
Hi there! My MRI was great. I had a small white area which my doctors think is scar tissue from the radiation. So I am thankful for everything that has been done and the chemotherapy I am continuing with in helping to heal me. I also attribute it to positive people and energy around me from others also. I am very thankful. God bless everyone. I go back every 3 months now and will pray for the same positive results.

June 2, 2002
I have now finished with my 6 weeks of radiation and 1 week of chemotherapy in tablet form. It was super! I was a bit tired and a little constipated but other than that it was much better than I had anticipated! I am able to go back home to Bermuda on Sunday and continue the chemotherapy pills there! It is Temodar and Zofran which they are giving me.

Fingers crossed, I have an MRI in August and meet my doctors again. But before that we are going to Disney World for some fun!

top of page

April 2008
Just wanted to give an update on my son David. I know it helps others as it helped me to read about survivors. David is 15 now...turning 16 in October 2008. He has been off his chemo and other cancer related meds since Sept 2006 and January 2007 with the tamoxifen. He remains clear of cancer. He did go on synthroid in February 2007 which he will likely be on forever for hypthyroidism due to his radiation/chemo...not a big deal at all.

Last year we also had Dave tested for hormone deficency and his tests showed he was negative the human growth hormone. This not only effects the obvious..height..but also the heart, kidneys, and general well being. So Dave began hgh injections, which he gives himself every night (this began in Feb.08) and it's become very routine..not a big deal. The shots do not hurt at all. How long will he need them? Who knows. Maybe forever if his body does not produce the hormone. The doctor is concerned about the internal organs. We shall see....each patient is so different. Other than that Dave is doing very well. He is almost 5ft 6 so that makes him feel good. He is still growing but may never make it to over 6ft like his brother..but that's not really of much importance when you look back at how far he has come.

He currently performs stand-up comedy. He has been doing this mainstream for two years. He's a natural. Politically incorrect as well! He has performed at several different Improv's, The HardRock here in Florida, and a host of smaller local clubs..occasionally he even gets paid! He's going back out to Calif, staying with comedian Todd Glass (very funny man)- who tours with David Spade...Dave is living his dream and it doesn't get much better than that. Hope and faith, always. So that's about it for now. Just wanted to encourage others and let people know there is hope. There are survivors out here! Go ahead and google David Fitting....and if you want his caringbridge site it is: www.caringbridge.org/fl/david
We continue with MRI's and of course blood work, nobody here is in lala-land...rather we choose to live in the here and now. :)
Sincerely,
Kathy- Dave's mom

September 30, 2006
Just wanted to update David's information. As of September 8th, 2006, David is finished with chemotherapy. He had been on the CPT-11, tamoxifen protocol from Duke for over two years-following his relapse in May 2004. He was getting MRI's regularly- every 6 weeks. Dave decided since his scans have been 'clear'- no sign of re-growth...he would like to say good-bye to chemo and go about the business of living. Dave has been performing stand-up comedy at the Palm Beach Improv and has done The New York Comedy Club in Boca Raton,FL...he writes his own material and has also taken lessons from one of the comics of Last Comic Standing..Mr. Al Jackson. This kid has kept on going through all his 3.4 years of treatment. He has taught all of us around him about attitude and spirit. I just want everyone to know that since none of us know what the future holds...just keep the faith and keep living your life.

Dave turns 14 October 9th.....he's very precocious and intelligent. All he wants to do is perform and
make people laugh......he's done some Family Night Comedy....but...ahem....prefers Adult Mike Night.....because people have asked for him...the owners let him come back on adult night....he's living his dream and attending 8th grade and just keeps on going! Hope is huge, so hold onto it.
www.caringbridge.org/fl/david

March 16, 2006
Just to update on David: Dr. Gururangan at Duke, has decided since David is doing well and handling his protocl okay, that he would like to extend David's treatment...which was to end at the end of March (2006)...another 6 months. This would be then, the end of September.
David agreed to the protocol. Naturally at 13 he's had enough....but he understands and is willing to cooperate. Ideally the doctors said a full 5 year course on this protocol has shown extremely promising results. But I have to do this one step at a time since his original treatment began in June 2003......and David has said he's sick of being infused for hours and maybe if there were another oral chemo, he would consider the five year plan......it's difficult because he's a teenager and he wants to be 'normal', but he also understands the seriousness...and also, that there are no gaurantees. He has an awesome spirit and as all of know....one day at a time. Otherwise all his scans have been clear and so far he's doing great! You can follow his journey by logging onto:
www.caringbridge.org/fl/david

Thanks,
Kathy- Dave's mom

September 29, 2004
It will be 2 years in January since I was diagnosed with a grade 4 GBM. Over the past few months, I've been feeling better and better with my MRI scans showing improvement each time (except twice it stayed the same size (right front tempral lobe and on the cerebellum). Before that, I was a big mess (you know the routine...pills and puke,...sit up or stand or yikes tilt the 'ol head and spin-o-ramma (like a slot machine, flip, flip, flip).
When I was between rounds of Temezolomide, we took family vacations. So glad we did too! Last September In Disney, Fla. and this past June at Six Flags, Darien Lake NY, July at Canada's Wonderland near Toronto. Can you tell we like parks with thrilling rides? In almost all cases we rented motorized scooters for the day (worth every penny) I know my kids will have great family memories of all of us having fun. Would't recommend The Great Canadian Mine(Mind)Buster (shake rattle n' roll!) or Space Mountain at Disney (stars speeding by and strobes galore, thought I was going to meet my maker)

This is remarkable news! I knew it would be great because I've been feeling so good like my old self B.C.(before cancer).
CLEAR SCAN!! Iwas given the choice whether to continue Chemotherapy for another few months or go cold turkey and break my addiction to chemo (ha ha).Although the MRI could not identify any cancerous cells the Dr. indicated that there is a strong likelihood that microscopic cells are still there. By taking the Chemo we are looking to keep those buggers small.

Thanks for all your love, encouragement, support and prayers.

Love, Marci xo

top of page

Hi!

My son, Mark Greenleaf, had GBM, and has his bio on your site. We would ask you to add something to this.

In May, 2007, Mark will have his 5-year anniversary if his tumor surgery!

Nothing like a happy ending!

Best regards,
Al Greenleaf (Dad)

top of page

August 6, 2003
Hello, Everybody! I just wanted to touch base again and give everyone an update on Ken and how he's doing. We just received word from our doctors that his 5-year-checkup MRI was CLEAR! We are officially celebrating now! We took a trip with our girls. We just got in the car and drove north enjoying sites and sounds from Alabama to West Virginia. We all had a grand time! I hope things are going well with all of you. I do so enjoy talking to other survivors. I hope to hear from many of you soon. I also included some pictures this time of Ken and me with our daughters at our local skating rink. Talk to you all later.
Shan Higginbotham

Feb 9, 2003
Hi, All!
Ken had his latest MRI the last week in January, 2003. Again, thanks to the good Lord above, everything is still clear. We wait 6 months to do another one in July and that will be our elusive 5 year mark!!! If that one is clear, we can go to having MRIs once a year! I'm truly amazed that we have been blessed with this miracle. I read stories of people battling this thing daily constantly trying new things and I'm reminded of God's grace to us.

Since Ken's 2nd surgery in July of 1995, we did the routine of 34 radiation treatments then a year and a half of chemo. Since then we've done nothing special except extra vitamins, selenium, and an aspirin a day. We can live with that!!!

When we met with our oncologist last week to hear these wonderful results, I asked about Ken's lack of energy still. He can still work and do a lot of things like he normally did. He's just really drained after anything out of the normal routine. He never was before GBM. I thought after 5 years that it should be getting better. Docs said no. That is normal. He suggested Ken try taking Ritalin for his "motivation" and memory lapses. Is anyone else out there taking Ritalin and did it or did it not work for you?

Thanks for listening and reading. God bless and good luck. Love to read the emails. Keep 'em coming!

This is an update for Ken Higginbotham. He had is 4-year checkup in July, 2002. The doctors said it was not only good...it was perfect. He had two blood vessels to bleed around Thanksgiving causing him to have to add an aspirin a day to his daily dose of vitamins, etc. Those bleeds have now cleared up and there is still no sign of tumor regrowth!!! All the time...God is good, and God is good...all the time. I enjoy reading bios and updates. I have also enjoyed receiving emails from some of you. Keep in touch! And good luck to all those survivors and their families out there!

top of page

November 29, 2005
This is Cliff Marks, diagnosed 3/03 with a GBM. I would like to update my story. Upon diagnosis I had a gross total resection of my tumor and Dr. Lillehei (a great neurosurgeon and man from the University of Colorado Health sciences Center in Denver) placed ten Gliadel wafers in the cavity. I then went to the Duke Brain Tumor Center for follow-up treatment (not because I had any doubts in Dr. Lillehei and his team; my wife and I simply wanted to go to what we deemed the best place in the country to get treatment for a brain tumor). Less than a month after Dr. Lillehei's surgey, Dr. Allan Friedman operated on my to see if I qualified for their monoclonal antibody study. The good news from that surgery was that they could find no live cancer cells (which paradoxically excluded me from the study). They then put me on their aggressive radiation/chemo program. Like most of us who have had radiation, I had daily blasts for about seven weeks (excluding weekends) while also beginning treatment with Temozolomide. I was on chemo for a year (a rotation of Temodar, CCNU, and CPT-11) and had MRI's about every six weeks or so. I finished my year+ of chemo in 8/04 and have had only clean MRI's since. If all continues to go well, March of next year will mark three years of cancer-free MRI's, so I feel like I'm well on my way to beating this thing. I attribute this success to great doctors, tremendous support from friends and family, many blessings from friends and strangers,and this gut belief that I had that it just wasn't my time and that I could triumph over a GBM.

July 2008
To all YASG.. I just want to say that I have spent that last couple of hours this morning reading a lot of the updates, some are very old and some are new.. I wish I could have everyone just personaly email me their story so I can get a good idea on how well each individual is doing. When my mother was diagnosed in Feb of 04 at age 49 our family was devastated.. we geared up for the whole "6 months is all you have left". The last time I updated was back in Oct of 07, she has had 4 birthdays since then. She has gone to Vegas a couple of times.. she walks she talks she works 50-60 hours a day. She did have a personality change for sure.. but that is just something we have to deal with.. The last MRI the dr said lets go 1 year.. my mother said nope.. I won't go a year.. not ready for that give me 9 months.

Since all of this my mother has lived with someone, either my sister, or myself, or recently in the past 18 months we have all lived together, my mother, sister, myself, my son (Tristen13) my sister's kids (Tyler 12, Clayton 7, and Samantha 4). We are a very close family, however no matter how big the house you put 3 adult females related to each other in one square location you are going to have problems. Now my mother and I butt heads all the time.. we are so much alike yet so different. I am the only one in the family that would tell her when she was out of place yelling or talking bad or just being mean.. Due to the surgery I know.. but I still told her it was right in hopes maybe she would realize. So this last May our lease was up and my mother was determined to get her own apartment, I mean she has lived her entire life pretty much with a kid and some grandkids under her roof.. So afer the last MRI we felt secure, safe if you will. She got a brand new spankin car, and go her own apartment 2 months ago.. of course she is lonely and misses us but she is loving it.. she could not be happier.

Anywho.. my niece was 5 months old when this all started and that devasted my family thinking we were going to loose my mother and she didn't get to see her first grandbaby girl grow up.. But my mother beat the odds, they said 6 months, it has been 4 years and 5 months, they said she would never walk again, walks just fine, never work again, works 50-60 hours a week. She started working part time after only 3 short months. and remember my mother was paralyzed on her entire left side from the seizures, and they said she would be paralyzed for life.. nope..

Mom had her 9 month MRI and the DR came in and put all the scans up and pointed at one picture and said this isn't good news for you or me!! He said he would talk to her chemo dr and her radiation dr and see what the plan of action was if you will.. Now I geared up for the 6 months they told me about, but after every passed you just assume you are in the clear right? So when my sister called me to tell me it was back I broke down. My mother handled it very well. She broke down a little when she emailed everyone at work but since then, I have seen no tears.. you can see a change of expression on her face.. but I tend to call her every day now.. which I didn't do before. which is stupid. so I call her out of the blue and tell her I love her.. just to tell her.. cause you know we butt heads a lot and fighting was the majority of our relationship. she laughs at me now because I do call now and say that. We have never really said I love to our mom or her to us.. every once in a while but not all the time.. funny how something can make you totally change what your norm is.

So Dr called on Friday and said that he wants to do surgery again. He hasn't talked to the chemo dr cause he has been on vacation.. hmm.. a dr on vacation.. is that really legal? just kidding. So up in the air still but plan is to have the surgery the week of the 21st.. so that gives me what like 9 days.. what to do in 9 days..

My mother plays online poker every day on the weekends and every night.. she rocks at a good hand of TX holdem.. she loves it.. her biggest dream is to play 1 hand at the big poker tounry in Vegas.. I don't know where it even is.. but it is on t.v. and it is like a $10,000 hand. I wish I could make my mothers only 1 dream come true but unfortunately not one person in my family was blessed with money.. I keep pretending that the bills that come in the mail are checks.. and then I think well what would the bank say if I deposit this bill.. hehe.. Anywho.. if anyone knows of the poker tourny or knows anyone involved some information would be great.. I have not ready about a story that has my mothers same journey. She had the tumor, had the surgery, had radiation and chemo and been clean for 4 1/2 years.. I don't know what is to come.. or what will happen this time.. But we will pray just like last time and she will beat the odds just like last time.. Hope to hear from you all.. I want to hear good stories or not so good.. just want to talk to people about it.

Tammy Freeman
tfreeman002002@yahoo.com

October 24. 2007
Hi there.. This is Tammy Freeman again.. I just wanted to update my mother’s bio on here.. Today is 10/24/07 and my mother has been going to have MRI’s every 6 months, and today she went to the Dr. to get her results from the MRI she had a couple of weeks ago.. The Dr. walked in, smiled and told his little miracle to go home.. Her MRI’s are now pushed out to 9 months. My mother is 53, all of this started when she was 49, they gave her 6 months to live. We have had some scares.. Sometimes she is just not mentally able to do much.. Sometimes she is week.. Sometimes she just doesn’t want to get out of bed.. She is still working about 50 hours a week if not more.. Driving.. She joined a gym to help strengthen her left leg.. the only thing she has is a little mobility issue in her left leg and all the hair didn’t grow back on her head. This truly has been a crazy experience for our life.. But you all should know.. Each and every one of you that is struggling with this disease, you should know that miracles can happen.. I have seen it with my own eyes.. I know it is painful and I know you want to give up but don’t.. It can happen. My mother was overweight, not active, didn’t have youth on her side, and she survived.. And you all can as well.. She is proof.. god bless all of you..

Thank you,
Tammy Freeman

top of page

August 4, 2006
The tumor came back in November of 06. I had to drop out of school, because my right hand was affected. But, I kept fighting. I have fought it with avastin and CPT 11. In the middle of a divorce, with my 5 kids, I felt I had no option but to fight. The three regrowths, 3.5 mm, 1.7 mm, and 1.5 mm, were all inoperable, but from November thru now, I have no visible signs of the regrowths. I still have to stay on chemo for a long time, but at least it has worked again.

Thanks for letting me update!
~Stacey

top of page

June 27, 2005
Just a quick update. My last MRI was May 23rd. Again it was all clear!! I have now switched to 9 months. I will go back to MD Anderson every 9 months for my MRI.

Janurary 4, 2005
I had my last MRI on November 15 2004 again it was all clear yea God. I have switched to now I go back every six months for a MRI and this coming March I will become a 5 year survivor.

top of page

May 15, 2007

I finally was able to get to DMV and Soc Security to change my name formally! This goal was able to be met for the most part due to my latest re-ability to drive. Its been a long road, that I am still traveling, but the bottom line is that I am no longer deteriorating, rather, improving at a slow yet blissfully steady pace!

Since I last wrote in, I have had 5 more surgeries: 1. prosthetic bone flap placement, 2. Prosthetic removal due to MRSA (anti-biotic resistant form of staph), followed by hospitalization to slow the MRSA, which ended in a prescription of Zyvox. This caused me to become aplastic anemic, requiring 4 units of blood to be transfused. Then came surgery 4: Titanium mesh bone flap replacement, and the ever unexpected lumpectomy in my left breast...BENIGN! (praise Jesus) but due to my history I and the Drs reccomended removal. That was in Dec of 2006.

I am now 25 yrs old. My husband and I still reside in sunny LA, CA. My student loans at upwards of 40,000 dollars were just discharged due to my "terminal illness" I filed 2 years ago. I have an MRI this mo...they are every 4mos instead of every 3 now, and am nearly pill free; I take ativan as needed when I have days where my brain seems to scramble! It takes the edge off!

Probably the greatest nuisance nowadays has been balancing my pH and some sporadic joint ache from being on steroids for so long in the beginning.
My husband threw me a surprise re-birthday in Nov to celebrate my 2yr anniversary. Im heading on 3 Nov 11, 2007! Every act I do these days feels so blessed and I am so thankful to feel "healthy" again.
If anyone had any ?s, please dont hesitate to contact me! Prayers, Love, and Support to all!
Ariane E. Pallend

October 25, 2006

It's me, Ariane Scott-Pallend. I wanted to thank, and further encourage, anyone either going through this personally or who is close to someone going through this to contact myself and others on this site for hope and support.

I have been through the mill and back since I last wrote, but there's a rainbow at the end of my storm! My surgeries now total 6: prosthetic bone flap replacement followed by MRSA infection (lethal antibiotic-resistant staph) leading to another bone flap removal, and after a course of severe antibiotics that made me severely anemic, finally a surgically replaced titanium flap (to prevent further infection). Thankfully, the anemia was in fact temporary...once I'd gotten 4 units transfused.

As far as deficits, they also have been fleeting. I was seeing neon colors for a while, and suffering memory lapses and "seizures" where I would be in the car with my husband (passenger of course) and suddenly I would start freaking out asking where I was and what had happened. The ER called them possible seizures; what was odd was that my husband said I was talking to him right before I started freaking? My right foot occasionally was numb, keeping me from driving anywhere, and in CA, this caused more hassles than most things! But, now my foot behaves. And my right hand occasionally gets "stiff". Lasts only a few seconds and only occurs maybe twice a month.

I have a new car now, one that is very responsive and not too zippy, so my reflexes are getting the chance to catch up! I am enrolled in school for a second bachelors in fashion design starting this winter. I feel old at 24 now going back to school! PC-post cancer-my priorities have altered and I feel the need to lead a less-stressful life. Therefore I no longer aspire to go to law school and do the whole govt/politics thing. I'd rather be more hands-on with people and travel. I also plan to have kids in the next few years, Lord willing! Im gonna enjoy this renewal on life that God has given me!

I am still stable (MRI's) and am now completely off meds. I will celebrate my 2 yr long term survivor day on Nov. 11, 2006 with my husband has been my right hand and my rock, and through God we have gotten through all of this and are more in love than ever. He and I have found friends with cancers and often swap stories, homeopathic remedies and what not so please feel free to contact me via email, or myspace: www.myspace.com/aripallend, or by ph (916) 502-1773.

Thus far, cancer has turned my world upside down and taken everything but my husband and family from me. Yet, I feel born anew, and beyond blessed to be here writing this to all of you who read this. until--
love, Me

top of page

Sept, 2005

I had my second anual MRI and all is still clear. Thankful everyday for the miracle of life. Kathleen

The journey continues. I had a MRI in Sept. and all is still clear.

I was really nervous this time. It was the first time I had waited a year between MRI's. I have always gone every 6 months. I was beginning to have some strange symptoms but they turned out to be breakthrough seizures so a change in medication dosages was all the Dr. ordered!

I just want to encourage everyone to take every chance at treatment. I know how it feels for the Dr.s to send you home to "go in peace".(May, 1995) Usually by that time there is not much to loose. Be aggressive it is the only option! Only God knows for sure if it is your time!

top of page

October 29, 2004
Hello to everyone. Kevin just had another MRI done and it showed no growth. Dr. Arenson at the Colorado Neurological Institute also did a CT scan of the chest and the chemotherapy is not effecting his lungs or heart. So they will be able to continue with BCNU and temodar. Hopefully the next MRI will show regression of the tumor.
Jessica

August 25, 2004
Well I am coming up on my one year diagnosis. (Sept. 4)

This year has been a roller-coaster ride, I was never planning on. But I have taken it with a grain of salt, I have been fighting my biggest battle. Over the past month I have switched doctors. I am currently going to the Colorado Neurological Institute and feel like I am actually starting to get the treatment I should be getting. My wife Jessica has spent numerous hours on the Internet searching for different treatments and therapies. I finally decided that it was time to get a second opinion about my diagnosis and I should have never waited as long as I did.

The Colorado Neurological Institute has shown me that there are other possibilities for treatment out there. They are very supportive of all of my decisions, along with wonderful programs for me and my family to attend. The tumor is stable and is being effected by BCNU. But my doctor believes that it won't stay that way for long, unless I add other treatments with it. After a certain period of time, the cancer cells are not effected by the chemotherapy, so it is important to add other therapies to the treatment.

I will start soon a Thalidamide, Temodar, and BCNU treatment in hopes to confuse the tumor cells so they will no longer grow. I am starting to lose function in my left leg, and if the tumor continues to grow I will lose it for good. At that point in time, I will probably go back into surgery and use a photodynamic therapy when the tumor is removed. I am excited to begin my new treatment and continue to win this battle in my life. I look at it as a bridge to cross and I am half way over it.

My family continues to be supportive of my decisions. And my children make the sun shine everyday. With prayers and support I will cross this bridge. Remember there is always a different treatment out there, it is finding it that is the hard part. My wife has done a wonderful job with research and I could not have done any of this without her. There is a foundation that grants adults with deadly diseases a wish. I am taking my wife to a resort a spa in Vail for week. It will be a very much deserved trip for us both. Thank You to The Dream Foundation.

August 3, 2004
I wanted to update everyone on how I am doing. It has been a physical and emotional roller-coaster. I am no longer taking Temodar, as it was not effecting the tumor.

In April my doctor decided to put me on BCNU every 6 weeks. It has totally wiped me out. My last MRI was at the end of May and it showed the tumor breaking apart. The hardest thing is hearing good news and then going in and hearing bad news. I never know what to expect. Soon it will be my 1 year anniversary of diagnosis and I am looking forward to having several more.

My strength has become weaker, and my muscles are starting to atrophy. Each day is getting harder, but I am determined to fight. It is not just the chemo that is effecting me, it is the Dexamethasone which is doing the most damage.

Hopefully soon they will be able to decrease some of my medicine. Other then losing strength, I am keeping positive. I have to, I have lots of plans and adventures left to concur.

April 23, 2004
First we wanted to update everyone on our new family member. Rebecca Lynn was born on March 29th, 2004.

In January I had my first MRI done after radiation and chemo treatment. The MRI should regret of the tumor, so they decided to keep me on the temador. After the first treatment of temador and another MRI in February it showed the swelling went down and some of the tumor was reduced. The doctors at University of Colorado were very pleased with the MRI results and continued me on the temador treatment. I take 320mg for 7 days and then I am off for 7 days. Every second month I will go in for another MRI. I did lose function of my left arm after regaining use of it. The regrowth of the tumor really effect it, so I am back doing rehab. I am scheduled to do another MRI in May so we are praying that the temador is keeping the growth down.

I am no longer working so I am able to enjoy my children and watch them grow. The temador doesn't really make me tiered so I am very lucky I can have normal days. Chasing Kyle (16month old son)around the yard tires me out the most. But everyday is more precious to me and I am thankful I get to see it.

December 6, 2003
Well it is hard to believe that it has been just over 2 months since my surgery. I have started chemo and radiation and only have a couple more weeks left. So far everything seems to be going really well. I haven't really gotten sick from either the chemo or radiation. There was some swelling going on, caused by the radiation but that went away when they put me back on the Decadron.

I have started going back to work part time and plan on going back full time at the new year. Also I have started rehab on my left hand to regain use of it. They anticipate that I will regain full use of it in a couple of months. It is amazing how well I feel and that everything is going so well. It shows the power of prayer. So keep the prayers coming and thank you to all of you. God Bless.

top of page

February 2, 2005
Tom's last MRI was September 2004 and he is still all clear. He takes his flax oil and cottage cheese everyday. We have moved to Texas with Tom's job. Our new phone number is 903-704-4147.

August 6, 2003
Tom's 16 month MRI was all clear, we are continuing with the flax oil and cottage cheese. His testimony is at www.flaxoflife.com

March 21, 2003
Tom's 12 month MRI results came back clean. No sign of cancer. We are praising the Lord for his blessings! The doctors will have him come back every four months now for the MRI's. He continues taking his flaxseed oil and cottage cheese along with other supplements

top of page

Oct. 30th 2006

I just wanted to give an updated view of my status and healing. I successfully completed my 6 weeks of radiation halfway through June of 2006. A month later they started me on a clinical trial of
Temodar. The normal dose of Temodar would be 5 doses in a 28 day cycle, but with this trial, I take 20 doses in a 28 day cycle, for 12 months. My side effects have been minimal, and my hair has finally started to grow back evenly again. I receive an MRI every 3 months, and have had 2 since 30 days after I completed radiation. Both MRIs have come back completely clear! No sign of re-growth, no "tentical- like" lines in my brain, and the scar tissue has even begun to not be
so visible. I know that God has a plan for me andeven though I am still on the Chemo for now, I am convinced that I am cured! So what if I have to get blood taken every week, or spend an entire day at MD Anderson every 3 months! That is my "pathway," my "pathway to healing," and hopefully I can use those opportunities to run into
other people who are going through the same problems to give them hope, and an optimistic attitude. The doctors have given me so many
"facts" about survival rates, and possibility of reoccurrence, but God has given me "TRUTH," not facts. God bless you all and continue
to keep up the fight!

top of page

April 6, 2006
I just put my wife's entire story on a forum but I will summarize it here and am more than happy to help anyone out there. I'm a radiologist and my wife was 44 when she got GBM.
She's had 2 craniotomies, gliadel chips, 6000R 3D conformal radiation, I believe 12-18 mo of p.o. temodar, then a recurrence, her second cranitotomy, more gliadel, then gamma knife and thalidomide and BCNU. after 37 months she had another recurrence, this one to the opposite side; we went to NIH, stopped everything to qualify for a trial study (ZD 6474) and went on that for a month. Absolutely no help at all. Tumor must have at least quadrupled in size during that month.
NIH mentioned a promising new drug called Avastin but dismissed it at this time in favor of Carboplatin. This didn't sit well with me or Laura, so we called Dr. Henry Friedman at Duke who felt we should not only go on Avastin but CPT11 as well.
We did and after a month the follow up MRI showed significant response, with some estimates of up to 40% less tumor enhancement and mass.

In general, my biases are against most alternative remedies in medicine. I am open minded but we do generally do pretty good work by our patients, at least when you take insurance companies and HMO's out of the mix. There are things we just don't do well with, like lower back pain and certain tumors. Frankly, GBM's were among the worst in my opinion; whenever I saw one in ny practice I personally regarded them as NFL tumors - Nobody fucking lives....Sorry about my language, but they were very depressing to diagnose.

I do not want to dismiss the treatments Laura had because they obviously did help. And I do not want to dismiss other stuff like Scorpion venom or MHT. Traditional treatments stink with GBM, or rather, GBM scoffs at traditional treatments, so this is an area that whatever you can throw at it is worth it. We'd try Ruta C and Calc phos if we had to. We'd try crystals or chinese herbs, or whatever.

But I want to urge anyone who is afflicted to either contact Duke or pester your oncologist to take Avastin/CPT 11. I can tell you that very smart people have said it generates a response 65% of the time, is durable and well tolerated (God, disregard the "risk" of bleeding; for crying out loud, these are brain tumor patients, of course some of them are going to possibly bleed....). Our oncologist is 3 for 3 now with pts. on this regimen.

Of course, many payers won't cover this. Do not get me started, folks, there are many to blame, both patients, doctors, insurance companies, government - that is not for this forum. But I will tell you, do not let someone unfamiliar with Avastin/CPT11 dismiss it. Talk to someone who is familiar with it; it may be your tumor location, size, or grade, or the MRI characteristics and appearance, or your general health factors all converge to make you more likely to survive than not even with Temodar and 3D radiotherapy. But don't let anyone dismiss it or put you on BCNU or carboplatin.

Hope this helps, and hope Laura continues to do well.
Feel free to email me.
joe ullman

February 7, 2005
I am still free of GBM after 26 months.I had Gamma Knife last July and just have to deal with necrosis and its side effects, but- I'm still standin'! and I will win this battle and war. My best advice? Don't feeling sorry for yourself.Enjoy what ife you have and have a bad atitude when it comes to GBM. I hate it and it's not going to live its parasitic existence in My head!

October 21, 2004
Hi, Just an update on my bio.
I stopped taking Temador in April of this year. In May I had some changes on my MRI that also looked like necrosis, so they weren't concerned. Meanwhile, I have never felt like a "sick" person. I feel and look great. In June My neurosurgeon suggested another craniotomy. He suspected some tumor reccurrence and even if there was none, he needed to remove the necrosis.

I had my second surgery june 25th. There was a very small amount of tumor and quite a bit of necrosis. He placed more BCNU wafers and I walked out of there 2 1/2 days later, feeling great.

I went to Mass General where I had Gamma Knife done on the tumor bed boundries.

I went to NIH in Bethesda and spent several hours with Howard Fine, world reknown radiation oncologist. We mapped out my plan of care. and my oncologist here in Maine follows everything to a T.

I am now getting BCNU IV, but they give it with Aloxi and it's a picnic. I haven't felt on bit sick from it. I am on Thalidomide and Celebrex to prevent new vascularity forming should the tumor try to return-NOT!

Alternative therapies as follows:
Prayer,prayer, and more prayer visualization
frankinsence essential oil -I inhale it-goes right to the brain, rub it on the soles of my feet, both carotid arteries, and brainstem area. Also on palate and inside of cheeks.Young living.com has pharmaceutical grade oils

I Eat no flour or sugars of any kind, try to eat lots of raw foods to keep my body on the alkaline side of 7.4 ph. Cancer cannot live in an alkaline environment but thrives in an acid one (think fast food,sugar,wheat,flour,rice,sweet fruits etc fruit juice , dairy, red meat, chicken etc. There are lots of books out there on the suject.

I had an MRI on the 18th of Oct. and there was not a bit of enhancement-no cancer. spectroscopy was absolutely normal.
I have maintained a great attitude through all of this. ..

Nov. 25th will mark 2 years since my first surgery. Sine then I have climbed the Burren in Ireland,dug for fossils in an alligator infested river, cooked meals for over 200 people, and explored Nappa valley for the 11th time.

We are not sick-It;s a bump in the road and we will prevail.

January 6, 2004
15 months after initial diagnosis and surgery I remain cancer free.I am almost done with one year of Temodar treatment much of it high dose.I will probably continue on with Temodar for another 6 months( bringing the total to 18 months) as this has become standard protocol in Europe and Asia.

My MRIs continue to be totally clear with normal choline levels (measured by spectroscopy). In fact, I had an increase of a chemical at the tumor bed site which is indicitve of increased NORMAL brain cells. My tumor bed is disappearing. Check out my website to see my most recent MRI and pictures of a very healthy me.

I continue to have virtually no deficits.

I am blessed to be given my life with my wonderful, loving family. I pray for all of those who have contacted me and am happy to share any information and answer any questions other survivors may have. You can contact me via my website or email.

An added note about the website. Caringbridge.org is an outstanding(free) tool to use to setup a website that allows loved ones and friends to keep up to date without worrying about being intrusive or bothersome by calling on the phone. It was invaluable to me when I was first diagnosed as my husband was able to keep everyone posted on my progress.God bless you all
Laura

top of page