Glioblatom Multforme

On 4/14/2008 Juule wrote:

I have had glioblastoma multiforme for 2and a half years .  I will be getting my latest results from my mri in a couple of days.  praying.... I was given temodar and radiation.  If you still get on please write me I want to talk to someon who has this and I am having no luck finding anyone to talk to my children are in college but want to believe it won'[t come back. 

Congrats on your 2/12 yr mark!!! I hope you are doing well. You mentioned getting Temadar and radiation. How about Avastin? that could be an option if your MRI shows signs of change. From reading here and doing my own research there are other options that are common treatments.

About telling your children... My hs dx 11/07 (doing well) We havn't told our youngest daughters 18 and 12 the seriousness of his dx. He has had good results from treatments and is functioning very well. We just don't think it is neseccary to worry them at this point. However, they know he undergoes treatments and this is a serious situation.

College age is the time in life when everyone feels invinsable "it will never happen to us" is the reasoning. Probably because you have beat the odds already they think you are out of the woods.  If your trying to get them to understand the seriousness of your illness for family or personal reasons try printing out some info from reputable websites or have your Dr. talk with them.

This is never easy for families to digest. You bnow your children better than anyone else,so I think you have to go with what works for you.

Best of luck to you and your family.

On 4/14/2008 Juule wrote:

I have had glioblastoma multiforme for 2and a half years .  I will be getting my latest results from my mri in a couple of days.  praying.... I was given temodar and radiation.  If you still get on please write me I want to talk to someon who has this and I am having no luck finding anyone to talk to my children are in college but want to believe it won'[t come back. 

Juule,

I was dx with GBMiv in September '07.  I have older and younger children in the house, and I prayed over my words before speaking to them.  The whole family has been supportive, and I know who my Lord and Healer is.  I will pray for a good result for you.  I have had one clean scan in January, and am currently on cycle four of 5/23.  I feel good, and pray that you will have many, many good days coming to you, and that you will have a long and happy life.

Pat 

On 4/14/2008 Juule wrote:

I have had glioblastoma multiforme for 2and a half years .  I will be getting my latest results from my mri in a couple of days.  praying.... I was given temodar and radiation.  If you still get on please write me I want to talk to someon who has this and I am having no luck finding anyone to talk to my children are in college but want to believe it won'[t come back. 

Hi,

I am 30 years old (male) with a young family and live in Brisbane, Australia. I was diagnosed with an aggressive GBM in my left parietal lobe which was confirmed by biopsy in Oct 2007 measuring approximately 6.4cm x 4cm x 5.4cm. However, after much discussion (the pathology was not looking standard), treatment commenced anyway.

It was only some weeks into treatment when it was discovered from pathology reports that there was evidence of a PNET tumour surrounding the GBM. I consequently underwent a spinal MRI which came back clear showing it had not spread.

I underwent 7 weeks of concurrent treatment of Chemo (Temozolomide 160 mgs every day) and Radiation which began on 31 October 2007 and ceased on 17 December 2007. My first post treatment MRI Jan 15th 2008 showed a significant reduction in size of my tumour. Now 5.5cm x 3.6cm x 4.8cm, Radiation had ceased and cycles of Chemo tablets started in Jan 2008. I am now just about to start my fourth cycle of Chemo treatment (Temozolomide 400 mgs) for 5 days out of every 28 days.

I had an MRI this morning and find out results tommorow. Hopefully it continues to reduce in size or at least halts it's progress. But for now my Temodal is doing it's job. Fingers crossed for us both.

 As for family my liitle boy is 3 and I find it a blessing as We dont have too talk about cancer, just toys and fun stuff. But I make sure that everyone around me is realistic and understands the seriousness of the situatiion (sometimes bluntly)  I think it is important to do this.

I hope you are feeling well today.

Cheers Kev 

Good luck with the MRI results,
Juule...2 1/2 years is really great, though.

It's natural for your children to hope it'll never come back. I'm wayyyyy past college age and I still want to believe that kind of magical thinking about my dad's brain tumor. Circumstances haven't let me do so, but I understand the wish very well.

The question is, what do you need from your children? If you need them to be supportive if/when the tumor returns, then it's probably best to be gently candid with them about the fact that these kinds of tumors are not curable. Whether the MRI results are good or bad, getting them can be a conversation opener with your kids. 

They are adults now. It's OK to lean on them a little if that's what you need. You shouldn't have to face this on your own.

On 4/15/2008 Hyacinths wrote:

Good luck with the MRI results,
Juule...2 1/2 years is really great, though.

It's natural for your children to hope it'll never come back. I'm wayyyyy past college age and I still want to believe that kind of magical thinking about my dad's brain tumor. Circumstances haven't let me do so, but I understand the wish very well.

The question is, what do you need from your children? If you need them to be supportive if/when the tumor returns, then it's probably best to be gently candid with them about the fact that these kinds of tumors are not curable. Whether the MRI results are good or bad, getting them can be a conversation opener with your kids. 

They are adults now. It's OK to lean on them a little if that's what you need. You shouldn't have to face this on your own.

                        I want everyone to be prepared for what will happen.  They haven't had anyone die that they were seeing all the time.  I know they should be old enough but it worries me that they talk like I will always be here.  My Husband is great. I am 48 and we have been together for 32 years and have been married 25 years.  I have almost always been a stay at home mother. I am the parent they come to more .I am worried about how my family will cope. Iknow they are out of our house but still worry. Thanks for writing me.

 I will know my results for my MRI tomorrow, Wednesday.

On 4/14/2008 BigDaddy wrote:

 

On 4/14/2008 Juule wrote:

I have had glioblastoma multiforme for 2and a half years .  I will be getting my latest results from my mri in a couple of days.  praying.... I was given temodar and radiation.  If you still get on please write me I want to talk to someon who has this and I am having no luck finding anyone to talk to my children are in college but want to believe it won'[t come back. 

Juule,

I was dx with GBMiv in September '07.  I have older and younger children in the house, and I prayed over my words before speaking to them.  The whole family has been supportive, and I know who my Lord and Healer is.  I will pray for a good result for you.  I have had one clean scan in January, and am currently on cycle four of 5/23.  I feel good, and pray that you will have many, many good days coming to you, and that you will have a long and happy life.

Pat 

 

On 4/14/2008 kevinoz77 wrote:

 

On 4/14/2008 Juule wrote:

I have had glioblastoma multiforme for 2and a half years .  I will be getting my latest results from my mri in a couple of days.  praying.... I was given temodar and radiation.  If you still get on please write me I want to talk to someon who has this and I am having no luck finding anyone to talk to my children are in college but want to believe it won'[t come back. 

Hi,

I am 30 years old (male) with a young family and live in Brisbane, Australia. I was diagnosed with an aggressive GBM in my left parietal lobe which was confirmed by biopsy in Oct 2007 measuring approximately 6.4cm x 4cm x 5.4cm. However, after much discussion (the pathology was not looking standard), treatment commenced anyway.

It was only some weeks into treatment when it was discovered from pathology reports that there was evidence of a PNET tumour surrounding the GBM. I consequently underwent a spinal MRI which came back clear showing it had not spread.

I underwent 7 weeks of concurrent treatment of Chemo (Temozolomide 160 mgs every day) and Radiation which began on 31 October 2007 and ceased on 17 December 2007. My first post treatment MRI Jan 15th 2008 showed a significant reduction in size of my tumour. Now 5.5cm x 3.6cm x 4.8cm, Radiation had ceased and cycles of Chemo tablets started in Jan 2008. I am now just about to start my fourth cycle of Chemo treatment (Temozolomide 400 mgs) for 5 days out of every 28 days.

I had an MRI this morning and find out results tommorow. Hopefully it continues to reduce in size or at least halts it's progress. But for now my Temodal is doing it's job. Fingers crossed for us both.

 As for family my liitle boy is 3 and I find it a blessing as We dont have too talk about cancer, just toys and fun stuff. But I make sure that everyone around me is realistic and understands the seriousness of the situatiion (sometimes bluntly)  I think it is important to do this.

I hope you are feeling well today.

Cheers Kev 

 

                          I try to let them all know I am not going to be around, but they seem to not hear me .......... I hope that they all are ok when i am gone..Julie

thanks for writing me.  I tried to find a support group but my Dr says there aren't any because this cancer is not common. 

julie

USA

First of all - congratulations on 2-1/2 years of fighting this beast!  Keep up the good work!

As for support - is there a group at the hospital where you are being treated?  There is one at both of our local hospitals.  Plus, continue to use this board as a sounding board, for support to vent, whatever...

One thing our doctors told us when my husband was diagnosed with GBM - when we asked "how much time?" they told us that he wasn't at any point where the clock was ticking... in other words, they wont give a timeframe until such time that symptoms would indicate limited time.  They emphasized that there were lots of survivors who have had it for many years, including some in their program going on 15 years!

My husband too is doing Temedor.  Trying to keep at it for 24 rounds = we shall see, but so far, so good, thank heavens.

Please check to see what resources the hospital can direct you to for support - my husband really takes comfort in meeting with other cancer survivors that we meet at Kids Konnected (kids with parents who have cancer, and the parents chat while the kids do activities)  Do they have a Wellness Center near you?  People have told me that those are great places too!

 Good luck, and God Bless

Gayle C, wife of John C, GBM warrior since Sept 06