Glioma

Hi my sister was just diagnosed with Glioma stage 4 cancer and she is 4 weeks pregnant. They said it's life span is 15 months and that you never go into remission. She had the brain tumor removed on Monday and they said they got all of it out. But that there could be microscopic cells floating and that they want to start chemo by a pill only for 15 months and radiation every day for 6 months. Is there any survivors out there with this type of diagnosis?

Don't believe in the stats and any negative reports from ANYONE, but BELIEVE in GOD.  Find your sister some healing scriptures and read them daily....you can also.  Believe in the Word of God for a long quality life and don't allow anything to change your thinking.  I will pray for your sister and unborn child....I'm only giving you the advice of what I've been doing...my BABY is 11yrs old and that's just what we've been doing to get us through.

 

Be Blessed

Did you or your child have glioma?

First, I am very sorry to hear of your sisters diagnosis, and at such a horrible time, that being during a pregnancy, not that there is ever a good time for this to happen to anyone. I personally don't believe in most of the life expectancy prognoses that the doctors give at initial diagnosis. Everyone is different and responds differently to treatments. Your sister had nearly 100% of the tumor removed surgically, and that is an important first step. Seeing as she is pregnant, I am assuming she is relatively young and possibly in otherwise good health. That all bodes well for her responding to treatments and keeping her strength up. Second, I think you probably mean 6 weeks of radiation instead of 6 months. The "standard of care" for this kind of cancer is usually 6 weeks of radiation therapy with Temodar (chemo pill) every day for that 6 weeks. Following that most patients get an MRI and then begin what is known as 5/23 therapy which is Temodar for 5 days in a row, then 23 days off. Generally this continues for 12-18 months beyond radiation. What makes this so difficult, in my limited understanding, is that while your sister can take radiation treatments while pregnant, I do not believe she can get chemotherapy because it is too toxic to the child she carries. There was another similar story on here recently, perhaps you can find it on some recent pages and can network with that family, perhaps get some insight. I believe their options were radiation only or do a "medically necessary abortion" to continue on with both radiation and chemotherapy. Again everyone's situation is different, and I would hope that your sister's doctors are giving you all the best information. I hope you will find support and some answers here, I certainly have since my wife's diagnosis just over a year ago. She was just 32 at the time of her diagnosis, we were just married and contemplating things like starting a family, etc. No one is prepared for this when it falls in their lap, the best you can do is cope and seek information. People do beat this disease, and our neuro-oncologist has used the phrase "effectively in remission" to describe my wife's progress. You can't know what will happen until it happens, good or bad. You just have to keep on fighting. All the best to you and your sister. -Brandon.

I'm sorry to hear about your sister.  Brandon gave you good information in the last post so no need to repeat it here, but I did want to let you know about a site you can look at with survivor stories -- there is hope.

http://www.virtualtrials.org/survive.cfm

My thoughts and prayers are with you, your sister, and family.

Nancy 

**husband dx 8/07, GBM, surgery, radiation/Temodar, now on 5/23 Temodar 

 

On 5/15/2008 myweddingbus wrote:

Did you or your child have glioma?

 

It's my child (daughter) was diagnosed 2/28/08 at 11 yrs old.  She is doing very well.  She completed her 6 weeks of radiation on 5/6/08 and we are going to get the results from the MRI @ 1:00pm.  She is being treated at MD Anderson by Dr. Wolff.

 

On 5/15/2008 Brandon-cg wrote:

First, I am very sorry to hear of your sisters diagnosis, and at such a horrible time, that being during a pregnancy, not that there is ever a good time for this to happen to anyone. I personally don't believe in most of the life expectancy prognoses that the doctors give at initial diagnosis. Everyone is different and responds differently to treatments. Your sister had nearly 100% of the tumor removed surgically, and that is an important first step. Seeing as she is pregnant, I am assuming she is relatively young and possibly in otherwise good health. That all bodes well for her responding to treatments and keeping her strength up. Second, I think you probably mean 6 weeks of radiation instead of 6 months. The "standard of care" for this kind of cancer is usually 6 weeks of radiation therapy with Temodar (chemo pill) every day for that 6 weeks. Following that most patients get an MRI and then begin what is known as 5/23 therapy which is Temodar for 5 days in a row, then 23 days off. Generally this continues for 12-18 months beyond radiation. What makes this so difficult, in my limited understanding, is that while your sister can take radiation treatments while pregnant, I do not believe she can get chemotherapy because it is too toxic to the child she carries. There was another similar story on here recently, perhaps you can find it on some recent pages and can network with that family, perhaps get some insight. I believe their options were radiation only or do a "medically necessary abortion" to continue on with both radiation and chemotherapy. Again everyone's situation is different, and I would hope that your sister's doctors are giving you all the best information. I hope you will find support and some answers here, I certainly have since my wife's diagnosis just over a year ago. She was just 32 at the time of her diagnosis, we were just married and contemplating things like starting a family, etc. No one is prepared for this when it falls in their lap, the best you can do is cope and seek information. People do beat this disease, and our neuro-oncologist has used the phrase "effectively in remission" to describe my wife's progress. You can't know what will happen until it happens, good or bad. You just have to keep on fighting. All the best to you and your sister. -Brandon.

Brandon,

 

you said effectively in remission. That has never been told to us before I have searched eveywhere. My 18 year old son was diagnosed last May just before he graduated. They have told us over and over that there will be no remission every. Right now after all the brain surgeys and shunt he is doing well. We went through the standard rad/chemo and then more chemo and now that it has not grown they may put him on another round of chemo. But they told us not to be under the misguided notion that this will ever be in remission. What do you make about this.

Well, those were our doctors words, I remain cautiously optimistic. He has also said he "has no reason to believe the tumor will return". I think he is basing this on the degree of how complete my wife's resection was, the radiation/chemo treatments she has had so far, and the details of her pathology, which was AAIII, malignant but less aggressive than GBM. Or, it could be that he is just projecting a positive take on my wife's chances. Just like every patients story is different, I think every doctor has their own way of interpreting medicine and their own way of communicating to the caregivers and patients what they believe. Your doctor is just being upfront with you about what he/she believes, I think that is to be respected, but any outcome is possible. I am glad your son has not shown any signs of re-growth. It sounds like he is responding to his treatment so far. My wife has a year more of Temodar (chemo) to go, but it's working for her to date. I believe that youth is a powerful weapon against this cancer. All the best to you and your son.