GBM

I visit several web sites trying to gather information on GBM.  My mother is 77 and had a large GBM removed in March she has done her radiation at johns Hopkins and did chemo for most of that cycle.  She will be on a 5 day a month for six months regimin starting the end of July.  I hear so many reports of people surviving for years on this sight and not such good news on others, what I don't see is the age of these long term surviors of the "monster".  Moms mind is slipping and she is very weak.  Is any one else in this same possition.   I am her caregiver and I am the true sandwich generation, with her living with us and my three young children.

Any answers, support is a blessing.

Hi,

My Mom was 79 - diagnosed in January 2009 and passed away on May 21, 2009 - I miss her terribly.

She went through the radiation and chemo - got so sick and just couldn't do it anymore - came home because she was in Florida when this all happened - started radiation again but no chemo and did about 10 treatment and by that time was on decadron - she was weak, short term memory loss, began to fall alot, urination problems, not being able to hold it...this comes with it.  The decadron cause lots of muscle weakness but they do feel better.  Anyway, Mom stopped everything and lived 2 weeks and 2 days after entering nursing/hospice home.  It was heartbreaking but I think even she knew she couldn't fight it - it was the hardest thing in the world for me and my family.  My sister and I both took care of her and Dad too, of course.  It just happened all so fast and that beast just took her. 

Good luck to you - I hope your Mom improves!

Hugs,

Rita

 

On 6/28/2009 Ritzy wrote:

Hi,

My Mom was 79 - diagnosed in January 2009 and passed away on May 21, 2009 - I miss her terribly.

She went through the radiation and chemo - got so sick and just couldn't do it anymore - came home because she was in Florida when this all happened - started radiation again but no chemo and did about 10 treatment and by that time was on decadron - she was weak, short term memory loss, began to fall alot, urination problems, not being able to hold it...this comes with it.  The decadron cause lots of muscle weakness but they do feel better.  Anyway, Mom stopped everything and lived 2 weeks and 2 days after entering nursing/hospice home.  It was heartbreaking but I think even she knew she couldn't fight it - it was the hardest thing in the world for me and my family.  My sister and I both took care of her and Dad too, of course.  It just happened all so fast and that beast just took her. 

Good luck to you - I hope your Mom improves!

Hugs,

Rita

My mom has gotten pretty weak, her coloring is off and she gets nausea very easily.  I'm trying to get her ear to heal that was burnt by the radiation.  Her spirits go up and down.  I wish I had more people helping me out, this sucks alone.  I just hope for a good stretch before she goes downhill, for my kids sake, she has lived with us for 10 years and my oldest is only 11.  So it is REALLY rough on her.

Thanks for your reply and God Bless your Mom.

Lisa

My MIL was diagnosed in Septemer 2008 with GBM.  She is only 58 though.  There have been times that have been very rough.  Especially the 4 weeks after radiation.  She became depressed and exhausted...had the burnt ear from the rad too. But then slowly she came out of it.  She got stronger and the depression got better.  Remember that each round of your Mom's chemo will be different.  My MIL has had 8 rounds of the 5 days of Temodar and a couple times it was like she hardly noticed she was on chemo and other times it knocked her on her rear...as she puts it!  She lived with us for 3 months after diagnosis.  It helps to make the best of everyday and not take a single moment for granted...especially on the good days/weeks.

Keep in touch.

Peggy

Hi there: I have only posted a few times but like many others have come often to this board for support, guidance and knowledge. My Father was diagnosed three days after his 72nd bday.. Dec 12 2008.(GBM , 2 areas affected one tumor 5cm ,removed in it's entirety and one small tumor 1cm which was inoperable) . He too had immediate surgery and the 6 weeks of radiation and chemo at the Moffitt Cancer Center in Tampa.I have to say the month after the combined treatment really left him feeling weak , with very shaky hands and trembling lower lip and very tired (who wouldn't be though?) Throughout the process we did daily exercises with my Dad listening to happy upbeat oldies music and tried to help him work through his fatigue. Slowly but surely he came back , his big blue eyes even have their sparkle again. He then started the 5/23 regimen with Temador at the end of March but has had difficulty with his platelet count since and has not been able to continue the monthly chemo.(It has been 3 months. ) Our NO recently had him take another MRI and said, in his words " It looked excellent and everything is stable." My Dad is now going in for a weekly blood check to check his platelet count and is feeling good. He has gained back his weight , going to the movies and restaurants, was given the OK to drive again and he is carrying on conversations about current and past events whereas before he had troubling "finding the words". We did contact a Jeanne Wallace,a nutritionist who specializes in brain tumor patients and my Father is taking the recommended supplements and trying his best (with my Mom's devoted help ) to adhere to the diet. We live pretty much like everyone else of this board from MRI to MRI but I am so grateful for everyday with him. He is strong and determined and is trying his best to give this beast a run for the money. My wish for him and everyone else on this board is that he..we beat it!

Wow!  It sounds like you really have your hands full!  My heart goes out to you. I can't imagine going through this with children.  It's hard enough when it's just my dad and me.  My mom was diagnosed with GBM three months ago and came through surgery and the first round of chemo/radiation with two clean MRI's so far.  We're geared to start up the 5/23 next week and I have to say, she's in really good shape. I'm not sure if it's because she was treated in Germany or if we just got crazy lucky, but our worst problem is that  her head/face is quite puffy from the steroids.  I would also have to say that her diet has been a really big factor.  Sugar is absolutely out, as are nuts and red meat.  She eats lots of flax, blueberries, non-farm raised fish and salad.  We try very hard to keep her out of the cupboards!  I'm sure it's all you can do just to make sure everyone eats, but if you are able to regulate your mother's diet, it may help with her mood, energy and healing.  

 Best of luck to you! 

Hi there for any of you who have experienced failed radiotherapy and chemo please please dont give up. My dad had a gbm grade 4 brain tumour inoperable and received radiotherapy in January. We were subsequently told in February it had failed and he had less than two weeks to live. He lost his speech completely, mobility became incontinent and was just going in and out of consciousness all the time. We contacted a doctor abroad who is from what i gather the oly person who has ever cured this type of tumour. He set us a strict diet protocal along with herbal medication and my dad is still here today defying everything the docotrs have told us. They cannot believe it. He had a scan and the tumour had shrunk, he has amazed doctors. It is still tough and a long haul but please do not give up hope! if you want to know what my dad has took please feel free to email me anytime

 

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Take care

Beth

Sorry forgot to mention please do not give your famil sugar as it feeds cancer. Also try to keep their body as alkaline as possible as cancer cannot live in an alkaline body!

 

Take care

Beth