I'm new here. AA3

WEF1823

I'm 61 yrs old however am a world ranked show jumping rider. I was showing horses in mid July of 2012 and just stopped speaking. I took 3 aspirin thinking I was stroking out. I continued to ride 2 horses then called 911. Aug 1 I had brain surgery and refused complete removal of the tumor(about 80% removed) which would have rendered me left side paralyzed and speechless. 8 weeks of radiation and 75 mg of Temodar while getting radiation then went to 400 mg. that landed me in the hospital with dangerously low platelets. 300 mg kept me bedridden with locked up joints. 200 mg is the magic number for me. No side effects other than mild joint pain. I have not stopped riding and showing. The largest effect is the mental anguish and despair I feel at 2 am when Dr Google leaves me with no hope. Im horrified that the bottom line is "luck" as to our survivability times. I will continue 5-28 schedule with Temodar but if that fails me I c no exit nor options. I decided to gamble and add HGH injections to my regime of vitamins and medications. I also took the HPV shots just in case it's a herpes based cancer. i am confused as to y the cancer returns after being traumatized by surgery and radiation. My only answer was herpes virus. I take generic Valtrex every day which is the prophylaxis for herpes outbreaks. I have a health degree and have 12 MDs in my immediate family. I want to b my own advocate and b aggressively proactive. I use conventional treatment and have obviously added pretty daring but not dangerous treatments. These different treatments are based on sound science theory. I'm not going to litigate myself so I have everything to gain and nothing to lose. I hope my gamble works but I know it's no harm no foul. I feel physicians r terrorized by lawsuits so we must do our homework and not just do the norm. The norm states at best we have 5 yrs. not good enough for me. 

mccindy

completely understand

Athough my tumor is a Grade II Diffuse Fibrillary Astrcytoma, I really understand what you are saying about time limits.  Everything I've found about these tumors puts median survival time at 7-10 years, for the Grade II type.  That's even after resection. I had a resection in July and the surgeon got about 99% of my tumor out.  I'm young - 41 years old, and female, and had a gross total resecion.  All of these things are supposed to mean a longer survival time but I feel like the odds are just so stacked against those of us who have fallen victim to this dread disease.  Like you, I've decided the time limits are not good enough for me either!  I'll be interested to hear if the meds you are taking make a difference for you.   I know the recurrence rate with Astrocytoma is so high because even with surgery, radiation and chemo, there are literally millions of cells involved and it only takes a couple that get missed to continue to grow and bring the tumor back.  Good luck with your treatment, I hope you have the best of outcomes!

margaretjane1

mccindy said:

completely understand

Athough my tumor is a Grade II Diffuse Fibrillary Astrcytoma, I really understand what you are saying about time limits.  Everything I've found about these tumors puts median survival time at 7-10 years, for the Grade II type.  That's even after resection. I had a resection in July and the surgeon got about 99% of my tumor out.  I'm young - 41 years old, and female, and had a gross total resecion.  All of these things are supposed to mean a longer survival time but I feel like the odds are just so stacked against those of us who have fallen victim to this dread disease.  Like you, I've decided the time limits are not good enough for me either!  I'll be interested to hear if the meds you are taking make a difference for you.   I know the recurrence rate with Astrocytoma is so high because even with surgery, radiation and chemo, there are literally millions of cells involved and it only takes a couple that get missed to continue to grow and bring the tumor back.  Good luck with your treatment, I hope you have the best of outcomes!

Brain cancer survival

I have a dear friend who had brain and lung cancer, lung being primary.  She underwent whole brain radiation for the brain tumor and has been cancer free for the last nine years....however, wiithin the past three years, she has been having long term side effects that include incontenance, memory loss and the most frustrating of all is that she cannot walk w/o a walker - it seems the messages from the brain do not reach the legs.....has anyone hear of this?????  Is there somethig that can be done???  We both live in Upper Michigan and while we grew up together, I live 100 miles away and try to come on the week-ends to help her and her husband.  Any suggestions?

mccindy

margaretjane1 said:

Brain cancer survival

I have a dear friend who had brain and lung cancer, lung being primary.  She underwent whole brain radiation for the brain tumor and has been cancer free for the last nine years....however, wiithin the past three years, she has been having long term side effects that include incontenance, memory loss and the most frustrating of all is that she cannot walk w/o a walker - it seems the messages from the brain do not reach the legs.....has anyone hear of this?????  Is there somethig that can be done???  We both live in Upper Michigan and while we grew up together, I live 100 miles away and try to come on the week-ends to help her and her husband.  Any suggestions?

radiation damage

Unfortunately, one of the unfortunate side of effects of whole-brain radiation is that it can have long-term side effects that show up years after.  This is from damage done to normal brain cells by the radiation.  The sad thing is that there is no way to repair that damage, and the effects are usually permanent.  With secondary brain tumors, such as your friend had, they often have to use whole-brain radiation to treat it.  It's a choice of not treating, which can result in death, or treating, which can result in these delayed side effects.  The fact that your friend had lung cancer with mets to the brain and is alive to talk about it nine years later is in itself a miracle.  Prognosis for lung cancer which has metastasized is usually very  poor.  I hope that your friend is able to regain some of her mobility, but it is likely that she will not.

WEF1823

mccindy said:

completely understand

Athough my tumor is a Grade II Diffuse Fibrillary Astrcytoma, I really understand what you are saying about time limits.  Everything I've found about these tumors puts median survival time at 7-10 years, for the Grade II type.  That's even after resection. I had a resection in July and the surgeon got about 99% of my tumor out.  I'm young - 41 years old, and female, and had a gross total resecion.  All of these things are supposed to mean a longer survival time but I feel like the odds are just so stacked against those of us who have fallen victim to this dread disease.  Like you, I've decided the time limits are not good enough for me either!  I'll be interested to hear if the meds you are taking make a difference for you.   I know the recurrence rate with Astrocytoma is so high because even with surgery, radiation and chemo, there are literally millions of cells involved and it only takes a couple that get missed to continue to grow and bring the tumor back.  Good luck with your treatment, I hope you have the best of outcomes!

Still here

I also take large doses of vitamin D. My last MRI oct 1 was clear. Temodar 200 mg every 28 days with doable side effects. My risk of reoccurrence is 51% in the next 18 mos. then reduced to 25% for next 2 yrs. did not have total resection. Wasn't interested in a wheelchair. If/when it comes back I won't treat it. It will have beaten me. I just want to do something different since obviously what's going on isn't working. My father sister cousins uncles are all medical doctors of some form and  Im doing everything anyone guessed might work. I have nothing to lose. I was really a stage 2 but they made me stage 3 so insurance protocol would pay for temodar. I'm sick of this 10 yr archaic program which has mediocre to sad results. If I have to swallow gasoline to try and survive it. I will. So I'm 18 mos in and still here for now. I'll keep in touch if I remember my damn password. I m angry im getting messages from people trying to con me put of money. WTH. All Middle East people asking for money with some hardship bull$hit. I sent obnoxious profanity back. I don't know who yo turn them into. All they will do is get another handle and IP address. 

WEF1823

margaretjane1 said:

Brain cancer survival

I have a dear friend who had brain and lung cancer, lung being primary.  She underwent whole brain radiation for the brain tumor and has been cancer free for the last nine years....however, wiithin the past three years, she has been having long term side effects that include incontenance, memory loss and the most frustrating of all is that she cannot walk w/o a walker - it seems the messages from the brain do not reach the legs.....has anyone hear of this?????  Is there somethig that can be done???  We both live in Upper Michigan and while we grew up together, I live 100 miles away and try to come on the week-ends to help her and her husband.  Any suggestions?

Brain damage

My MRI showed scarring a year after radiation. I do have some memory issues but not detectable. I push myself in hopes that other areas of the brain will take over. So far it's worked. 

mccindy

WEF1823 said:

Still here

I also take large doses of vitamin D. My last MRI oct 1 was clear. Temodar 200 mg every 28 days with doable side effects. My risk of reoccurrence is 51% in the next 18 mos. then reduced to 25% for next 2 yrs. did not have total resection. Wasn't interested in a wheelchair. If/when it comes back I won't treat it. It will have beaten me. I just want to do something different since obviously what's going on isn't working. My father sister cousins uncles are all medical doctors of some form and  Im doing everything anyone guessed might work. I have nothing to lose. I was really a stage 2 but they made me stage 3 so insurance protocol would pay for temodar. I'm sick of this 10 yr archaic program which has mediocre to sad results. If I have to swallow gasoline to try and survive it. I will. So I'm 18 mos in and still here for now. I'll keep in touch if I remember my damn password. I m angry im getting messages from people trying to con me put of money. WTH. All Middle East people asking for money with some hardship bull$hit. I sent obnoxious profanity back. I don't know who yo turn them into. All they will do is get another handle and IP address. 

keep fighting

It's good news to hear that your last MRI was clear.  Mine was also.  Just remember, if it does come back that doesn't mean it willl have beaten you.  Since you don't know when it will recur, you don't know what new treatments will be available at that time.  Dont' give up hope now. 

BenLenBo

Sorry to hear you have been

Sorry to hear you have been dx with brain cancer.  You need to first trust the physician's , ask as many questions you need to become informed and

confident in the treatment you will be receiving.  It becomes a partnership, you need to do your part in fighting your cancer, not fighting or doubting

you medical facility.  If you are not comfortable, move on to another treatment faciliity.  Your anger over having cancer is understandable, but you

need to work for the goal of being cancer free, and enjoy every day you are on this earth.  My son when he was dx stated, " IT IS WHAT IT IS AND

WHY NOT ME"!  He is cancer free today, and still has a wonderful attitude, enjoy each new day!

 

Prayers for acceptance and the ablility to fight, fight and fight this cancer!

 

(((HUGS)))

 

Carol