Brain Cancer

[huntersmom]

I am 32 years old and I worked at the Children's Hospital Hematology/Oncology clinic for several years. I never thought that my family would have to go thru what they are going thru right now. About 3 months ago, one of my uncle's was diagnosed with Non-Hodkins Lymphoma and started chemo shortly after the diagnosis. After just a few treatments, he decided that he was tired of being sick all the time, from the treatments, and he stopped ALL the treatments. He is very active and I believe that he is doing exceptional because of his very active and high energy lifestyle. Approximately 3 weeks ago, my other uncle (the brother of my uncle mentioned above) was diagnosed with Glioblastoma multiforme (GBM)- a very aggressive brain tumor. He underwent surgery to try and remove the tumor last week and after the surgery was complete, the Neurosurgeon met and discussed with us that he was only able to remove 60% of the tumor. He stated that it was very big and was extremely deep. My uncle met with his Oncologist today and the drs' have stated to him that he needs to take chemo (pill form) for a year and will need to undergo Radiation, 5 times a week, for a total of 6 weeks. I learned a lot by working in the Oncology clinic before, but it seems that since this has hit my family, I am a little lost with my knowledge.
I am highly interested in hearing from someone that is going thru this with someone themselves or that may know someone that has this type of Brain Cancer I realize that it is very progressive and they had mentioned to my uncle that if he didn't have that surgery, then he might have 4 months to live. My question is "will the chemo and radiation actually help him some or just prolong his life by a few months longer?" It's kind of like my uncle is lost as to what would be best for him. He is for sure that the chemo and radiation will make him sick; he states that he is going to die either way- he asks, does he want to die sickly by taking the treatment options available or to just enjoy his life that he has now and forget the treatment options. What if he starts the treatments available to him and he just can't continue with them any longer, then what happens??????

[materialcreations]

Your uncle made his decision a couple of times. Once to do chemo and second to stop it. With it being such an aggressive cancer, it will eventually win. It will not matter what the patient eats. The cancer will continue to consume his energy, his nutrition and essentially take his body hostage. My husband reached the point of saying no to more treatments. (cancer base of skull or brain stem) We focused on quality of life. We have tried to do things that are important to my husband, like watching baseball on tv. He has even gone to watch his favorite team play live at the stadium. For him, watching tv became better than going to games. My husband, Joe, is currently alive, but he is fading fast now. Anybody else would be bedridden. Like your uncle, Joe has always been an active man. It is difficult for him to lie in bed. It is even painful to his hip. He weighs less than 130 lbs. and he is 6'1". From our experience, we have not regretted the months of loving and sharing that we have had. In some ways, watching a loved one die is harder than being the dying patient. Small things, like a sunny day, take on new importance. There was a point much earlier when my husband said, "Living is hard. Dying is harder."

[barbaranoel]

My husband and I are 37/38 years old. He was recently diagnosed with a GBM IV 3 weeks ago. We actually start radiation on Monday and we are waiting on the Chemotherapy drug, Temodar, to come in any day now.

The dr's are very optimistic that they can keep him going from year to year until a better treatment or cure can be found. He had a craniotomy Jan 20 and they were able to remove 80-85% and with aggressive radiation and treatment they feel they can have good results.

Of course, reading the stats and all these websites is definately depressing but we keep telling ourselves that he has some excellent things in his favor:

-age (most men affected by this are over the age of 50- he is only 37)
-health (he is in excellent health - they believe he's been fighting this successfully himself for over a year so with the help of surgery, chemo & radiation he should have a better than avg chance)
-they removed 80-85% by surgery

All of our drs (neurosurgeon, radiologist and oncologist) say that you should not get sick by chemo & radiation anymore. There are enough anti nausea medicines that should help.
We refuse to let this beat us, we want to be one of those that out last the "statistics". We have a 5yr old and 11yr old and I have to believe that he's going to be here to help raise them and see them graduate.

Barb

[angela75]

Ladies, My name is Angela and I am from Melb/Australia. Last year my husband George was diagnosed with grade 3 tumor in the brain stem. He had 7 weeks of Radiotherapy 5 days a week in resulting the tumor in remission. In the past few months George had been complaining about his left hand side of his body feeling weak and loss of strength....after endless calls to his neurologist/oncologist to do further scans to the spine I finally convinsed him that there was somthing not right. 24th Feb09 George was diagnosed with an agressive tumor in the spinal cord that had also seeded in the spinal fluid. As you can imagine we are devestated...it's like the world has been pulled beneth my feet....George was immediatly taken to hospital and began another 7 weeks - 5 days per week treatment to the spine and fluid and as a result he has has more movement and feeling in the left hand side of the body. The bad news is that the fluid is moving around the head area and I dont know what happens from here on....we are taking each day as it comes as remaing positive and optomistic...it's all we can do. Unfortunaly George is in bed most of the time as he suffers from dizziness, is unbalanced and cannot walk without assistance, his eye sight is poor due to the radiation damage to the optic nerves...he's pretty much in bed all the time and admitted in hospital till treatment is finished. After radio therapy GEorge will be taking a chemo tablet called TAMDel. Barbera noel - Can you please write to me telling me about this Chemo tablet your husband is waiting for. I know that America is more advanced in it's medicine and am searching and asking around for new technology treatments and chemo tablets that are best available for George. My emai is agaspo73@bigpond.com I can then ask our nurologist about this form of Chemo and see if it is more effective. Your assistance will br greatly appreciated!!!

I have had to take time off work and have become a full time carer for George. I am only 34yrs old and just when our life began and everything was going so well this tragedy hit us. Its very hard but I keep strong infront of George and always positive to keep him going...I turn every negative into a positive and I beleive god has given me a special strength to keep going.

I wish you all the very best with all my heart and hope that in time soon we find a cure for this to keep our loved ones close to us as much as possible.

[barbaranoel]

I just wanted to update, My husband Chris passed away on March 10, 2009.

He had been sick the couple of weeks before his death and the dr believes he had developed a blood clot, which caused a pulmonary embolism.

Barb

[angela75]

Im so sorry Barb, may Chris rest in Peace.

George is given a needle everyday to prevent blood clots as he's mostly in bed and doesnt move around a lot although next week we have booked him to a rehab to help him learn to balanace, walk and to deal with his situation as best as he can. Tonight we have had a bad night, George is suffering head aches and nurse just gave him some morphine to help him cope, I just sit here looking at him and cannt beleive what is happening to us>>>anyway.......thank you for the info and what else can I say except be strong and keep going. :)

Ange x