One patient with glioblastoma still alive nine years later
by Therealestatelady on Wed Mar 21, 2007 12:00 AM
Hi, my first time here. My 65 year old mom was diagnosed with neuroendocrine cancer. Basically, this is multiple brain tumors that metastisized from the lungs (now considered and treated as "extensive small cell lung cancer). I have two questions:
1) What affects from the brain tumors can be affected down the road?
2) What prognosis were you given.
Everything we read says 6-12 months with treatment. Mom's finished whole-brain radiation and will begin chemo next week; expected to do 5 courses of the 21-day treatment. Her doctor (who doesn't seem to be very frank) says lots longer.
My greatest concern is what to expect from the brain tumor part of this disease. I am imagining serious memory loss, confusion, pain, etc. Any insight into this diagnosis and what to expect would be most appreciated. Signed, a loving, scared daughter. PS - If you have children (I have four ages 12-17) how have you communicated with your child? Will there come a time when we don't want the kids to see Grandma anymore because it is more scary and painful than they can handle?) THANKS SO MUCH. God bless us all. Julie
by Jenniferc on Thu Mar 22, 2007 12:00 AM
Julie: Let me first tell you that I am so sorry that you had to find this board. I came here for the first time in December when my 67 year old mother was diagnosed out of the blue with lung cancer that matastisised (sp) to the brain and bones. She had no symptoms until she felt dizzy one day (day before my father was to be operated on for surprise kidney cancer) and the day after Christmas. In any event it was the 4 tumors in her brain that led to the scan of the lungs and the diagnosis.
Her symptoms are improved since the radiation but what she experienced was dizziness, a slight loss of hearing in one ear. No pain or memory loss, just slight changes. An inabliity to handle alchohol as it made her feel off balance. The biggest issues she had was from the steroid they gave her to reduce the swelling caused by the radiation. That made her very shaky and weak and extremely weepy. She also lost all of her hair from the radiation. She had a slight lack of concentration as a result of the radiation treatment but seems to be getting that back. She had muscle weakness from the radiation which did not get better before she started the chemo
The bigger effects come from the chemo and that really can throw you for a loop. My mother sleeps alot of the time now, she is very weak and tires easily. This is a woman who during my lifetime I never once saw take a nap. That is the hardest part for me. I even got used to the bald head after about 2 days it just didn't bother me anymore, but the weakness is the hard part.
As for what to say or do with the kids. My mother had 4 kids and 13 grandkids from the ages of 18 to 2. My kids are the youngest at 5 and twins that are 2. We live in another country so the boys are not witnessing their grandmother being so ill but my nieces and nephews are, and it isn't always easy. But the older ones (the ones around your children's ages) have been told by their father that their grandmother will not be around forever and they need to make every effort to make the time with her count. The children are amazingly adaptive and understand and take things in stride. They see that grandma is failing but they also get to ask lots of questions and spend time learning about grandma so that they can tell her stories when she is gone. I am sorry to say that my children will probably never know their grandmother and that saddens me beyond words. So that is my long way of saying let your children be with their grandmother, don't burden them with details of the illness, let them ask the questions that they want answers to, when they are ready to ask them.
I hope an pray that your mom will be one of the ones that escapes the stats. Hugs. Jen
by Ricki1222 on Sat Mar 24, 2007 12:00 AM
I am a 53 year old female and I have gone through what your mom seems to be going through. My nsclc which originated in my left lung 5 years ago, had, after 3 1/2 years of supposedly being in remission, metastisized to my trachea, collarbone, and brain. I had the tumor removed from my cerebellum and began 18 weeks of chemo. After being pronounced to be in remission, I began Tarceva (a drug to keep the cancer dormant). I was told in June 2006, 6 months after being in remission, that the cancer had spread throughout my brain.
I had an ommaya reservoir inserted into my head (for intrathecal chemo) and began whole-head radiation treatments. After 10 treatments, I began intrathecal chemo.
I too had swelling of the brain and needed to be on decadron. It ruined my stomach and gave me acid reflux.
I am currently in remission...have been for a few months...I still have the side effects from the radiatin...tired at times, acid reflux.
I often think about what I will say and react if and when they tell me that treatment isn't going to help me anymore. I would tell my children and grandchildren and friends...support and love that's what got me through and good medicine.
by Ainmama2001 on Thu Mar 29, 2007 12:00 AM
My mom started to lose mobility in her left hand back in January and was diagnosed with half dollar size tumor in her brain on March 2nd. As she is is a heavy smoker, they did the CT scans and found a 5cm tumor in her lower right lung and smaller spots in both lungs. There is also evidence of it spreading to her spleen. Mom is 74 years old and watched her sister die just a year ago of the same disease. As she battled with it for 18 months, my mother has decided she wants no treatment, only comfort measures and hospice. In the 3 and a half weeks since this has been found, she's almost completely immobilized on her left side from head to toe now. She's on Effexor for depression, Lorazepam for anxiety and Dexamethasone as her brain steroid. As she has told all doctors involved (PCP, Neurosurgeon, Neurologist, Pulmonologist and Oncologist) that she does not want treatment, they have pushed her biopsy (of the lungs) off until the 6th of April. As we have no definitive diagnosis, we cannot get home care or hospice care and it's all very hard on my father, who has a bad back and can't always lift her. She's extremely jittery, emotional and now, immobile. I'm sure that in the short time since we discovered the tumor, it has grown or the swelling has gotten worse despite the steriod usage. Make sure that you note all things that seem unusual from mood to appetite to twitches...anything and if you notice something, make sure you notify your doctor and see if you can have another scan done so proper measures can be taken. Good luck, God Bless.
by lisaleigh on Tue Mar 09, 2010 11:01 PM
Can Metastasis to the Brain cause hallucinations and fear? My 87 year old friend has bladder cancer and now she has pain in her legs and fearful all the time that people in the nursing home are trying to harm her when nothing could be farther from the truth. She is like a second mom to me and I don't know what to do for her fear and confusion. She is on Hospice however they don't seem to be helping the family.
by Rosalind on Wed Mar 10, 2010 06:45 PM
I would investigate her pain meds. Hospice should be doing everything possible to make her comfortable. They should be helping her family as well.
by Lisaatkins on Fri Oct 14, 2011 03:20 AM
On Mar 21, 2007 12:00 AM Therealestatelady wrote: Hi, my first time here. My 65 year old mom was diagnosed with neuroendocrine cancer. Basically, this is multiple brain tumors that metastisized from the lungs (now considered and treated as "extensive small cell lung cancer). I have two questions:1) What affects from the brain tumors can be affected down the road?2) What prognosis were you given.Everything we read says 6-12 months with treatment. Mom's finished whole-brain radiation and will begin chemo next week; expected to do 5 courses of the 21-day treatment. Her doctor (who doesn't seem to be very frank) says lots longer.My greatest concern is what to expect from the brain tumor part of this disease. I am imagining serious memory loss, confusion, pain, etc. Any insight into this diagnosis and what to expect would be most appreciated. Signed, a loving, scared daughter. PS - If you have children (I have four ages 12-17) how have you communicated with your child? Will there come a time when we don't want the kids to see Grandma anymore because it is more scary and painful than they can handle?) THANKS SO MUCH. God bless us all. Julie
On Mar 21, 2007 12:00 AM Therealestatelady wrote:
by Lisaatkins on Fri Oct 14, 2011 03:21 AM
by warmfuzzy on Fri Dec 09, 2011 09:16 AM
Your father's brain symptoms sound very similar to mine, which turned out to be an operable brain tumour on the very top of my head, which was metasticized small cell lung cancer. Once it was removed, the symptoms disappeared, and we could concentrate on attacking the lungs. I strongly recommend a brain MRI to be sure. BETSY
by Sarasmom on Mon Sep 17, 2012 04:09 PM
Hello Betsy, a.k.a warmfuzzy,
How did you make out with operation. You have said your symtoms disappeared, but what did you do for further treatment, chemo or radiation? A very good friend of mine is in the same situation. Would like to know what type of side effects to prepare for.
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