Family member having a brain tumor removed from cerebellum

ptown · Regular Joined: 14 Jan 2009 Posts: 13

thanks hulamom,
she's been a dieter her whole life. convincing her to pound calories even if it will prolong her life will be like herding cats. at this point, all communication is still filtered through another family member. she's being highly selective about who she speaks to and it's pissing alot of family members off. god forbid she dies without speaking to the rest of us undesirables.

pbj11 · Site Admin Joined: 12 May 2007 Posts: 2403

Hi Ptown,

I hope the family understands that she's not intentionally trying to hurt certain members. The mind goes in all kinds of crazy directions with this diagnosis and a lot of people can't take the hub-bub of all the family members. My SIL acted as "information central" for my husband and I, so that we didn't have the constant annoying barrage of phone calls. My husband, at times, didn't want to have much communication with anyone and I had to force him to allow even our own kids to come around. They don't do this out of a wish to hurt, it's just how it happens. Make sure her primary caregiver is aware of depression issues for some cancer patients as this can easily be remedied. Above all, the family must remember -- it's ALL about her -- not them. Heck, I had to keep that as an ongoing mantra in my mind. Since my husband is gone, I make no bones that it is now ALL about ME. LOL We've been making family members angry for years now between the two of us. Rolling Eyes

It's not selfishness, it's just a way of coping.

I don't understand the not wanting to eat thing either. I did see that smaller and smaller portions filled my husband up as he neared the end of his life. Overall he just adopted a mindset that he MUST eat in order to survive. Cancer eats up so many calories, so he ate whatever tasted good to him. He FORCED himself to eat -- even when he didn't want to or when the food tasted like cardboard. Sometimes changing something as simple as using plastic forks/spoons can help a person when they have that metallic ocky taste from treatment. There are also appetite stimulants that the doctor can prescribe that seem to help some people. She needs to learn a different way of thinking to survive. I guess that's easier said than done, but know it's possible because of my husband.

I hope all goes better for her and the family.

God bless,
PBJ
_________________
Husband diagnosed with NSCLC Stage IV. (Non-Small Cell Lung Cancer) Fought & lived 2 1/2 years with multiple lines of treatment.

Post describing our battle: http://cancerforums.net/viewtopic.php?t=7026&postdays=0&postorder=asc&start=0

ptown · Regular Joined: 14 Jan 2009 Posts: 13

hi again everyone- update: chemo has begun. apparently the cancer is in lymph, bone, abdomen as well as lung, brain.... family sounds optimistic treatment will go well. so far, the anti-nauseau meds are working and she's not feeling any side effects. CATscan in 2 weeks to see if tumors are reduced. comments?
peace and love to you all.

ptown · Regular Joined: 14 Jan 2009 Posts: 13

Family member wrote: Her metastasis was not apparent last MRI done 1/30, so it grew to its present 3mm. globular size since then. It will be zapped, and she may need to have as many as show up in her brain zapped until she cannot stand the treatment anymore, because it is painful to have the head device screwed into your skull to immobilize it so that the rays can be delivered precisely where aimed. No one has any idea how the CT scan end of next week will turn out. Even if the tumor is smaller, it will still be a threat for future mets. This will be a battle to the end, provided that she has the will to continue, which she has now, but sometimes speaks of giving up down the road if all her life consists of is seeing oncologists and taking IV poisons and being subjected to gamma rays that cause multiple side effects, partly due to the post-treatment regimen of corticosteroids which cause her constipation and labile moods. Her next scheduled chemo is April 2nd.Doc wants her to have the gamma knife before then, so the team is working on scheduling it. The results of mets are not unexpected. Survival for many years is what is unexpected, since she was diagnosed with widespread metastatic lung cancer. Besides, the chemo does not cross the blood/brain barrier easily, if at all. Standard radiation may be in the cards down the road, and not very far down, but we are living this nightmare day by day.
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comments ???
so far nobody has given her a survivability date range (ie: 2 years, 10 years, etc...).
is that common? i wonder if my family member is being realistic, optimistic or pessimistic from the above email?

arasara · Regular Joined: 06 Mar 2009 Posts: 49

Hi PTown -

I am sorry your family member is going through this. It's such a hard thing to tackle. I am under the impression that once the cancer is widespread and stage IV, that treatment becomes more of a palliative measure and is aimed at extending the life of the person being treated; it is not a curative intent.

For us, my grandma has metastatic lung cancer to the bones and lymph. Her first doctor (ER one) told us 3-6 months and that there was basically no hope, but then she went to another specialized oncologist who said he'd like to try treatment to see how she responds and is hoping to get 3 years out of her. We're staying positive and hoping for the best, although being realistic, we know it could go either way.

I wish you guys luck.

Take care,

Sara
_________________
Caregivers to Pauline, age 72
Diagnosed with Stage IV NSCLC Adenocarcinoma on February 13th, 2009, passed away April 14th, 2009.

Fly high with the angels, Gram!!

ptown · Regular Joined: 14 Jan 2009 Posts: 13

arasara- i hope your grandma's life extending treatment works !!! thanks for your info. please keep me posted.

ptown · Regular Joined: 14 Jan 2009 Posts: 13

Here's an update. Any clarification or information would be so helpful. Thanks everyone. Ptown-
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In the early am, I drove her to the hospital for her next to last whole-brain-radiation treatment, today was the last trip. No more whole brain treatments with standard x-rays. You know, when you get a chest x-ray taken, the operator runs behind a lead shielded glass, tells you to take a deep breath, and hold it, then you hear a click lasting a third of a second, and your chest x-ray is ready for production. Well, picture your brain exposed to three or four unbroken minutes of those same rays, five days a week, for fourteen days. That is what she has just been through. Needless to say, it causes fatigue, short-term memory loss, some transient long-term memory deficits, severe headaches, double vision, constantly changing vision, and utter exhaustion causing lots of sleep during the afternoon. This makes sleeping through the night a problem.

Next day, we had to get up at five to make it to Cedars by 7:30, which we did. Our next visit there will be on the 11th, when she gets a spinal tap to see if any malignant cells are found floating around in the cerebrospinal fluid, underneath the membrane called the arachhoid mater and atop the pia mater, the membrane that contacts the brain directly. This fluid cushions the brain and spinal cord like shock absorbers. If bad cells are found, they will drill a hole at the top of her forehead, under the hairline, and place a permanent port into which chemo can be delivered periodically into the fluid. Unfortunately, there is no good chemo for the brain fluid. One day at a time. Love,...

ptown · Regular Joined: 14 Jan 2009 Posts: 13

my family member is now days from death. she has stopped eating and drinking and everyone thinks she will pass away within the next week for certain.

it was a long road. diagnosed in january with lung cancer in the brain.
lots of metastases to lung, brain, bone, lymph and blood.
months of chemo. then brain radiation. then a port implanted in her skull to deliver chemo directly into the brain. all oncology services were with the top specialists at Cedars Sinai in beverly hills...the best of the best and nothing helped

so, from diagnosis until death, approximately 10 months. she smoked only for a few years in her 20s and hasn't smoked since she was 24. she is 65 today.

she had suffered greatly and we are relieved she will be free soon.

wishing you all peace and love.

terrismom · Regular Joined: 19 Mar 2009 Posts: 46

My family's prayers go out to you and your family. It's a tough time. God bless you

Monell

ptown · Regular Joined: 14 Jan 2009 Posts: 13

thanks monell,
i appreciate your prayers even though i come from a family of atheists.
Smile

xoxo

ptown · Regular Joined: 14 Jan 2009 Posts: 13

my family member died yesterday at home, 10 months from diagnosis. she was in a coma-like situation for 24 hours.

wishing you and all your loved ones a CURE...

pbj11 · Site Admin Joined: 12 May 2007 Posts: 2403

Ptown,

I'm so very sorry to hear this news. I hope you and your family will have the support of each other's love to get through the upcoming days.

Hugs,
PBJ
_________________
Husband diagnosed with NSCLC Stage IV. (Non-Small Cell Lung Cancer) Fought & lived 2 1/2 years with multiple lines of treatment.

Post describing our battle: http://cancerforums.net/viewtopic.php?t=7026&postdays=0&postorder=asc&start=0

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