Stage IV Glioblastoma

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Stage IV Glioblastoma

by becca31881 on Tue Nov 20, 2012 03:27 PM

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Hello Everyone. My name is Rebecca and I was recently diagnosed with a brain tumor. After 3 weeks of awful headaches I decided to go to the doctors. I went to 2 doctors and also a hospital, which refused to perform a ct scan. He gave me Ultram (a very strong pain med) and told me that should help the headaches and then sent me home. After taking the Ultram the pain had not subsided. All it did was make me throw up. This was on a Saturday at the end of August. I took the Pain pill both Saturday and Sunday hoping for an end to the endless throbbing in my head. Monday, the headache wasn't bad and I was able to work, but my vision seemed off. Blurred. Tuesday was the same, not unbearable until Tuesday evening when the throbbing began again. Wednesday morning was very difficult getting ready for work, but I went anyway. I was in so much pain. I wasn't at work 5 minutes when my friend Dawn said lets go to the hospital. (a different one then previously mentioned of course). I was hesitant to go because I did not like hospitals, but I went. I'm really glad I did. I didn't have to wait long before I was having an MRI performed on me and a CT Scan. They found a large mass on my right frontal lobe that was hemmoraging. Just by looking at it, the neurologist new it was cancer, and it wasn't good. I was admitted on Wed, and Friday I had a craniotomy to remove most of the tumor. Unfortunately he wasn't able to remove all of it so my speech wasn't affected or worse. I have one more day of radiation and have been on Temodor for 6 weeks. I am scared because I am not ready to die. I am only 31 years old, and I want so much more from life. Any suggestions if this doesn't work? Survivors?  Thank You! :)

RE: Stage IV Glioblastoma

by jon4156 on Tue Nov 20, 2012 06:15 PM

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I don't think anyone in your age group is ever ready to die.  The first thing you need to do is back yourself up with competent doctors, specifically a good Neuro-oncologist.  You should consider filing complaints against the first doctors you went to, not suggesting a lawsuit, but you would do the rest of your community a great service by filing a written complaint of misdiagnosis to both their superiors (if they have one) and your state board of medicine.  You exhibited classic symptoms of GBM and the doctors who saw you were idiots for not only not recognizing those symptoms but not ordering a CT or MRI scan to help determine if a tumor was causing the symptoms.  You need to make sure they will never turn away another person with the same symptoms.

You don't state your location or the hospital providing your care.  Highly recommend you take all your medical information concerning this event and send it to another neuro-oncologist for a second opinion.  Use google search for "best us cancer hospitals" and use it to locate a good hospital in your area.  You can even forward your information to a remote hospital for a second opinion if you don't have a good feeling about any in your general area.

You are young and in a good age group for success.  What you are going through is scary but have faith and a good attitude if you can.  While there are no guarantees, there is no reason why you cannot be one who beats the odds.  Dwell on life, not your disease.  Keep active, work if you can, strive toward the "normalcy" that was your life before your craniotomy.  Talk to your fellow GBM'ers both here and on other forums, don't be afraid to ask for hope, love, and hugs when you need them, and learn as much as you can about your disease and potential therapies so you can make informed decisions regarding your health.

One last thing, if you feel you are at all mentally limited by your craniotomy find a relative or friend to go to your doctor appointments with you so they can write things down, ask questions for you, and understand what your doctor says so they can explain it to you in detail.

Have faith...pray to God.  Wishing you the best.

 

RE: Stage IV Glioblastoma

by Jeanmass on Tue Nov 20, 2012 08:25 PM

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Hi Rebecca,

My heart goes out to you. 

My sister was diagnosed with the Glio, stage 4 back, almost exactly 7 years ago, when she was 49. I am happy to say she is coming up on her 7 year anniversary. I am even more pleased to report that she is doing beautifully. She too suffered from horrible headaches and was originally misdiagnosed. It wasn't until she began suffering from stroke-like symptoms and was rushed to the hospital that the tumor was discovered. I think original misdiagnosis is not uncommon due to the symptoms that can vary significantly depending upon where the tumor is. Anyway, She underwent surgery (80+ % tumor removal) then radiation then 2 years of Temador (trade name). The key for her was finding the right anti-nausea medication which enabled her to keep food down, tolerate the chemo and gain her strength. (zofran I believe). While I began a massive download of lnformation gathering and alternative medicine research, she stayed the course of traditional medicine only and did not even alter her diet much. She has some peripheral vision/balance issues due to, what they believe, scar tissue and damage from radiation and some occasional headaches, blurred vision and is somewhat forgetful. But all in all she is, and has been since 3 months post diagnosis, still working. She is our miracle.  I do think that many alternative/natural remedies can help in so many ways and I'd love to share if you have any interest. (interesting reads: "never fear cancer again" and "outsmart your cancer" can offer some indepth information relative to diets and alternative (along with or instead of) therapies for cancer. Additionally, I have been reseaching a bit about "Fucoidan" which has potential cancer fighting properties as well as the ability to alleviate side effects of the chemo and assist on so many other levels. Many people here on this discussion board discuss this natural supplement.(made from seaweed from Okinawa - where cancer is minimal). Sloan Kettering discusses it here: http://www.mskcc.org/cancer-care/herb/fucoidan.  

I recently have another friend who was just diagnosed with this as well and his is located in the frontal lobe (same surgery regarding speech testing while in surgery). He is following the same protocol and they are adding a secondary drug which is in clinical trial to his treatment. 

Elimination of all sugar intake is key as cancer feeds off sugar. 

By the way, my sister was told initially that is was unlikely she had very long. She did not go online to see the negative stories about Glio. Instead, she focused only on her family, keeping well and work. She refused to believe negative thoughts and she (and I) think this was so key to her, not only longevity, but now normal life. Her MRIs come back clear each time and she is now down to having just one per year.

I wish you all the best Rebecca. You are young and therefore much stronger, which is a very good sign.

RE: Stage IV Glioblastoma

by siblingof on Wed Nov 21, 2012 12:35 AM

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Hi Rebecca. Your diagnosis story is very similar to my sister's. She also has glioblastoma. She saw five or six doctors, including an ER doc and two neurologists. They all rubbed their chins wisely and sent her home. It wasn't till I drove her two hours through a snowstorm to the ER of a teaching hospital that she was finally diagnosed correctly and admitted for a craniotomy. That was two years ago. She is still alive. I agree that you should make sure you have a neuro-oncologist. If there isn't one where you live, consider seeing one at one of the major brain tumor centers. The treatment you are receiving is the current best practice, and your age is in your favor. I also recommend the book _Anti-Cancer_ by David Servan-Schreiber.

RE: Stage IV Glioblastoma

by siblingof on Wed Nov 21, 2012 12:38 AM

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ps-- What happened to both you and my sister is that too many doctors "know" brain cancer happens to men over age 50. So when they see a young woman they assume it can't possibly be brain cancer.

RE: Stage IV Glioblastoma

by becca31881 on Wed Nov 21, 2012 12:00 PM

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Thank you for all of your advice.I did try to click on the Sloan Kettering link but the page was unavailable. Today will be my last day of (radiation) I have a very bad cold that I cannot seem to get rid of. I  have been taking vitamin c, drinking lots of green tea with honey, cough drops, vitamin c drops, pedialyte and nothing is working. Any advice for that. Im not sure what I can take because I dont want it to effect my other medicine.

Thank you for everthing.

Rebecca

RE: Stage IV Glioblastoma

by siblingof on Wed Nov 21, 2012 02:29 PM

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Rebecca, we just don't take anything at all without running it by the doctor via email or a phone call.

RE: Stage IV Glioblastoma

by tb1fan on Wed Nov 21, 2012 10:06 PM

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On Nov 20, 2012 3:27 PM becca31881 wrote:

Hello Everyone. My name is Rebecca and I was recently diagnosed with a brain tumor. After 3 weeks of awful headaches I decided to go to the doctors. I went to 2 doctors and also a hospital, which refused to perform a ct scan. He gave me Ultram (a very strong pain med) and told me that should help the headaches and then sent me home. After taking the Ultram the pain had not subsided. All it did was make me throw up. This was on a Saturday at the end of August. I took the Pain pill both Saturday and Sunday hoping for an end to the endless throbbing in my head. Monday, the headache wasn't bad and I was able to work, but my vision seemed off. Blurred. Tuesday was the same, not unbearable until Tuesday evening when the throbbing began again. Wednesday morning was very difficult getting ready for work, but I went anyway. I was in so much pain. I wasn't at work 5 minutes when my friend Dawn said lets go to the hospital. (a different one then previously mentioned of course). I was hesitant to go because I did not like hospitals, but I went. I'm really glad I did. I didn't have to wait long before I was having an MRI performed on me and a CT Scan. They found a large mass on my right frontal lobe that was hemmoraging. Just by looking at it, the neurologist new it was cancer, and it wasn't good. I was admitted on Wed, and Friday I had a craniotomy to remove most of the tumor. Unfortunately he wasn't able to remove all of it so my speech wasn't affected or worse. I have one more day of radiation and have been on Temodor for 6 weeks. I am scared because I am not ready to die. I am only 31 years old, and I want so much more from life. Any suggestions if this doesn't work? Survivors?  Thank You! :)

Hi Rebecca,

My wife had a very similar experience.  Headaches for two weeks, diagnosis of migranes or sinus infections.  Finally the CAT scan showed a tumor in the right frontal lobe.  Found the tumor on Tuesday, craniotomy on Wed.  She was 36 at the time and we had a one year old child.  Found to be GBM4.  This was July of 2008.   After sugery there was radiation and Temodar for 6 weeks.  Then off for a bit then we started 2 years of Teomodar.   5 days on 26 off.  It was rough at first but once they got the anti nausea pills settled it was okay.  Its been a year since we stopped taking the Temodar and all is going well.  Last MRI was still clear.   We are now going every 3 months for MRIs and our Neuro Oncol feels like we may be able to do every four months.  There is hope.  My best advice is get the best doctors you can.  We are in NY and have been usng Columbia and Sloan Kettering.  The treatment has been fabulous and I know we have access to the best technology.  Do your research.  Ask alot of questions.  If you dont like the answers, get a second or third opinion.  But keep your chin up.  You are young, healthy and have a great fighting chance.  I will remember you in my prayers tonight.  Stay strong.  Positive attitude works wonders!

RE: Stage IV Glioblastoma

by johngiustino on Thu Nov 22, 2012 05:50 AM

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Get a NO at a competent brain tumor center.  If you tell us where you live, we can give you some advice.  When you see an NO ask about clinical trials in addition to the standard therapy.

I too had really bad headaches for several months.  When I went to my regular doctor he thought it was sinus headaches and prescribed me a nose spray.  It was not until I had to leave a meeting at work and wound up at the emergency room was I diagnosed properly.  

-JG

RE: Stage IV Glioblastoma

by erinklodt on Tue Dec 04, 2012 04:56 PM

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Hello Bebecca i have also been recently been diagnosed with a brain tumor may 2012.  In may 4th i had craniotomy on my left side.  my surgery went well but they were not able to get it all out.  i have sense then had radiation and chemo (temodar) and i am my on chemo bosts.  in oct was my last mir and they say it am stable.  i am only 30 and i have 3 kids.  i am also freaked about all of this. i know that i have seen a few web sites (young adults surviving glioblastoma) that are positive but it seems that most time they dont look real great.  i have decided that i am not going to let this get me. like you said we have too much life to live.  i dont of answers either but i can understand how you feel and sometimes its nice to have that.  let me know if you want to talk,  i wish the best for you and know you are not alone  Erin

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