One patient with glioblastoma still alive nine years later
by lizandress on Sun May 10, 2009 12:00 AM
by Gothost on Mon May 11, 2009 12:00 AM
I am going to skip right to you writing about leaving your job. Look into what you can do. I worked.......well still on leave with Robert Half International. The way I handled it was.... I found out I had brain cancer after having my first seizure at the age of 30 while walking my son to get donuts. I went to my first emergency room ever. Well after I found out I had a brain tumor. I talked to my boss and my company and they did everything they could to help. I had been with the company for 2 years, and because of that and I was allowed to have 3 weeks full pay, and 3 weeks half pay for medical leave. I also received state disability of 60% of my wages from the previous year. Now I am in sales, so taking any time off stinks, but it had to be done to have the operation over at UCLA. I took 2 1/2 months off before I returned to work. For some reason I thought I had to go back. I did this for a 1 1/2 years going during that time I went to radiation for six weeks and Chemotheropy for a year of it. I really don't know how I handled it. My memory has stunk after this surgery, I have terrible short-term memory. I can't remember a name worth a darn, and that is all I sold being in staffing. After working that long I decided to take another break away, and in that time I figured out what I should do. I was able to go on State immediately I filed for Federal disability and was able to get it within 6 months of filing. This is because of a new law that was put tegether basically last year, here is the link http://www.braintumor.org/news_article/?p_NewsId=133397.&nbs I also have a long term plan though my company that will always make sure I make 60% of my past wages from one year back. As far as health care, I keep communicating to my company about how imporatant it is to keep me on the plan without going on Cobra. Cobra I thought was to expensive, but I recently learned that Cobra will only cost you 30% of your insurance costs not 100% for the first 9 months. So that is a big help...Lastly if you can have your company keep you onleave for as many months as possible maybe at least a year, and then pay for Cobra at 30%, federal medical care will kick in and reduce your costs way done. Not disability pay, but federal medical care, where you can get your precriptions like Timador, or like my seizure medication Kepra. As well as seeing the Doctor you prefer. Hope this helps...I really suck at writing and much better answering direct questions. Please let me know if I can help.
by rikki20082008 on Mon May 11, 2009 12:00 AM
I'm in the same shoes as you. I have oligodendroglioma grade 2 with the 2 deletions 1p and 19r (or whichever ones they are). I was diagnosed in August 2006. I have had no changes in the growth until Dec 2008. I met with my neuro oncologist, my neurosurgeon and we all decided to start Temodar. My tumor can be operable if it causes extreme problems, but due to a major blood vessell running through it, he doesn't want to touch it and he's probably on of the best neuro surgeons on the East Coast. My NO doesn't want to do radiation because he's afraid of the memory loss and thinks I'm too young (I'm 38). He says we have that in our back pocket if necessary. So, back to Temodar. It's an oral form with virtually no side affects, My doctor at UVA (University of Virginia in Charlottesville VA) does not do the 5 days on and 23 day off cycle. That cycle is pretty harsh for the first week. I was on the 21 day on and 7 days off. I tolerated round 1 very well. No nausea, maybe only slightly tired occasionally, I live alone and work full time and didn't miss a beat. Now, I did have to stop the 2nd round last Tuesday because I had critical values for platelets (they clot the blood). The reason this happened is because my blood work is done locally and faxed to UVA. UVA got the report that one test was low, they called and asked me to get it retested and I did. They never got the results. Not to scare you at all, but I ended up at the local hospital for 1 night getting 2 platelet transfusions. This was just 2 days ago, I have spoken with my NO this morning and he is adding my name to the weekly order to have the blood work released to me so there's more than one person looking at it. I have learned from this that we all need to be our own advocate. I will start round 3 probably mid June with a lower dose.
I did start Keppra in 2006 and have not had one single headache. I wonder if you're on an anti seizure medicine? I didn't have a seizure, I'm on it for precautionary purposes,
I now know the signs of low platelets which I didn't realize before. Tiny red pin marks starting with your legs is a BIG sign something's going down. I share this with others who may read this to save someone else a hospital visit,
My other question for you is. are you seeing a neuro oncologist? Do you live near a major neuro oncology center? I travel a couple hours to get to the closest one and they have many clinical trials and seem to be on top of things,. Your doctors would worry me with what they're telling you,
So, to sum this up, if the tumor is growing or causing you problems, I wouldn't be afraid to try Temodar. Oligo is supposed to respond well to Temodar and the side effects are relatively low. I get another MRI at the end of May and maybe it will show some shrinkage, it might be too early.
Sorry, I've rambled on, but I wanted to let you know my experience. Feel free to write back privately if you want.
On 5/10/2009 lizandress wrote:I've been diagnosed with an inoperable oligodendroglioma - almost three years ago. I've had no treatment whatsoever. My only symptoms have been headaches, some lightheadedness and, lately, some opthalmic migraines.Has anyone had experience with not being treated for oligodendroglioma? I read all kinds of stories about people's "survival" with the tumor, but they are pretty awful - chemo side effects, neurological losses (memory problems, etc.) and other things. But I've had nothing done and for the most part I feel fine. So what exactly is the point of treatment? Anyone? Even my doctors can't tell me that treatment will give me any real benefits - but they can tell me it will be difficult, painful, that I probably won't be able to work, etc. But there's no guarantee that it will actually benefit me in any way. I can take chemo for a year and a half, lose my job AND my medical benefits and maybe gain some extra "progression-free" survival. But the treatment won't cure the tumor nor will it actually lengthen my life; at least that's my understanding of the situation. So I'm curious to know if there is anyone out there who has braved the waters and avoided treatment - what has been the course of your disease? How long ago were you diagnosed, and how do you feel now? I can't seem to get much information about this tumor - my doctors are very good and respond to my questions, etc., but of course they can't commit themselves to anything. So it would be good to know what others are experiencing.
by Heritage_Softail on Mon May 11, 2009 12:00 AM
None of my Docs have ever told me that any treatment would work. All they can do is give you the research/facts that have been proven in clinical trials or over years. I as well have been taking Temoday for 1 1/2 years to date. Round 18 just completed 5/23 at 420mg per day. Working full time watching my triplets getting bigger every day. I also take seizure meds as well do to actual siezures. Just make sure you are following this close as stated on this board before this is a "MONSTER" and we have to fight it every way we can.
DX Nov 07 AO Grade 3
by jackiekay on Mon May 11, 2009 12:00 AM
I assume from your post that you have a low-grade tumor that has remained stable. I would echo what somebody else recommended--make sure you are being evaluated by a neuro-oncologist at a major brain tumor center. Many medical oncologists seem to think they are prepared to deal with the treatment for and the effects of brain cancer, but they are not. You have one of the more treatable forms of brain cancer. My husband has a grade 3 oligodendroglioma which is very aggressive. The neuro-onc told us we are looking at 10+ year survival rates for his, and that number is the average. Many people are living much longer than that. The lower the grade of cancer, the more likely for a longer survival. Do yourself a favor and make sure you are getting the best medical care possible. There is much they can do for brain CA patients now that was not available just a few years ago. Also, there are many new studies providing hope for the near future.
I got the impression from your post that the doctors made it sound like there is not much they can do for you. There are more and more long term survivors of GBM--one of the most severe forms of brain CA. Some of them are making it 20 years or more. The younger the patient, the better the prognosis. Learn as much as you can about the disease you have so you can make the best choices for yourself. If you have somebody close to you such as a parent, spouse, or sibling, that can learn along with you then it is even better because if you ever have to pursue treatment they can help you make decisions and make decisions if and when you are not able.
Please keep us posted as to what you decide to do,
by Kanoki on Fri May 15, 2009 12:00 AM
First of all, don't give up hope!! I want to give you a little different perspective from someone who has lived with this disease for some time. I was diagnosed with a grade II Oligo located in the left frontal lobe in September 2003. I went through the whole range of emotions from the doctors telling me that I had 2-3 years to live and that any of the treatment options avalable to me would not necessarily prolong my life. I was fortunate to eventually locate an Oncologist and a Neursurgeon who were willing to work with me and to research alternative treatments to give me the best possible outcome. I elected to have surgery followed by 1 1/2 years of chemo treatment with Temodar. They were able to excise about 2/3 of the tumor and honestly chemo was not problem free and I did wind up in the hospital multiple times with blood issues as well as colds and such but I made it through and 5 1/2 years later I am still here. I only took 3 weeks off after my surgery but in reality should have taken more. Like you, I was afraid of losing my job but when I came back I was able to talk to my boss and the company really went the extra mile in helping me structure my work schedule around chemo treatments. Like others, I do have memory problems and I sitll have some recurrent problems from the chemo's effects on my body but the fact of the matter is the tumor is stable and has shown no signs of growth since I finished treatment. I was also fortunate in that they recommended I not have radiation as they told me it would most likely not provide any benefit and the risks for me long term from radiation were too great (I was 34 at time of diagnosis).
The best thing you can do is educate yourself and like others recommended search out a center that specializes in brain tumors. My doctors worked closely with MD Anderson in Texas and they are still involved in my treatment even though I live in another state. For the most part, Oligos are very treatable but you need to find docs who are willing to work with you for the best possible outcome. If you have any more questions or would like to discuss please feel free to contact me!
by phoff29993 on Fri May 15, 2009 12:00 AM
I will be 60 next month and was diagnosed with a T2 Oligo in November '04. I also have 1p/19q deletions. The tumor is located in the right parietal region. I did not have surgery or radiation. I was treated for 12 months with Temodar. Other than constipation I had absolutely no side effects from the Temodar. I took a small pill called "Kytril" for potential nausea. I had none. I did not miss a single day of work and I don't think I was ever overly tired. Your description of the consequences of treatment are not consistent with anything I have read nor are they consistent with my own personal experiences. I tell my friends that if someone didn't tell me there was something wrong, I wouldn't know.
Do you wonder if your doctors are right? Do you wonder why their opinions are so out of the mainstream of treatment protocol? Do you wonder why their descriptions of the consequences of treatment are so different from other people's experiences?
Good luck on going this one alone. I will send you my contact info privately in case you want to contact me and discuss.
by Nena1197 on Tue May 19, 2009 12:00 AM
Hi Lizandress, Im 59 yrs. old and I've had an oligodendrogloima since 1993-thats right sixteen years! Don't walk run to the nearest major cancer hospital. Most notable are MD Anderson, Duke, I go to Sloan Kettering in NYC and there are more but stick with one of the top ten. This is your brain you are talking about and you must investigate the best of the best.Most anyone can fry an egg but you want someone who won't break the yoke!! In "93" it started as a grade 2 and I had radiation, now they say I should have had chemo first and saved my radiation option, none the less I've survived sixteen years! I have gone to university of Pitt, Univ. of Penn in Phila. and Sloan Kettering where I have had two resections, pvc chemotherapy and now on a clinical trial I'm on my seventeenth round the most they have ever seen at Sloan. My tumor was silent for nine years after the radiation, it progressed to a grade 3 anaplastic in 2004. I have never had nausea or other problems that couldn't be controlled with kytral or zofran and there are many more out there. I have a little short term memory loss and misspell words so if you see any it's because I didn't use spell check! I do well. I drive, sit my granchildren and have a wonderful circle of friends to say the least,and I have an unshakable faith in God ~and thats the end of the story for now~
by TaylorsMoms on Thu Jun 18, 2009 12:00 AM
My son now 16 was diagnosed 2 years ago this week. He has had a partial resection, Radiation + Temodar for 6 months following his diagnosis. The Temodar stop working so the doctors switch to a combo drugs called Irinotecan and Avastin in March 2008. Avastin was recently released by the FDA last month. I strongly recommend you ask your doctor about this new drug. According to the article and our oncologist the benefit is to cut off the blood supply to the tumor itself. My son will be on this treatment until March 2010 (total 2 yrs).
He tolerates it pretty well and experiences some vomitting and sleeps the first day. He still attends high school most of the time.
I hope this helps you.
Patty (Taylor's mom)
My son now 16 was diagnosed 2 years ago this week. His tumor is a Grade 3.
He has had a partial resection, Radiation + Temodar for 6 months following his diagnosis. The Temodar stop working so the doctors switch to a combo drugs called Irinotecan and Avastin in March 2008. Avastin was recently released by the FDA last month. I strongly recommend you ask your doctor about this new drug. According to the article and our oncologist the benefit is to cut off the blood supply to the tumor itself. My son will be on this treatment until March 2010 (total 2 yrs).
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