Pnet "peanut" brain/spinal cancer

KatCe

Wednesday, January 17, 2010 (just incase the date isn't with the post)

Our 31 year young daughter has just had a large tumor removed from her left front lobe. We're told it was about 20% of the size of her brain. The cells have still not been identified but they are called primitive. This cancer is rare in adults, and also in children, but found more in children than in adults. Today she began her radiology treatment. Friday will be her first chemo.

They plan to do both treatments concurrently. Children can handle it ok, but adults don't usually do as well. But it seems it is the protocol they want to follow. So she will have three types of chemicals, including CUNN (?) platinum, and a derivative of periwinkle. I don't have the proper names at my finger tips.

My question to others... what is the prognosis for this type of cancer? I didn't ask our Dr., as our daughter was right there and I didn't want to discuss this in front of her— if she didn't ask. We are very optimistic. She is the most positive person I know. She makes me feel small by comparison. By that I mean small in my spirit. She does not exhibit doubt nor negativity. I try not to show any either, but I feel her strength is very strong, while I tend to fixate on learning about things, which then makes me apprehensive. I can't really let go of the need to know, because what if there is some piece of knowledge out there that could make a big difference? I would not be able to live with myself if I didn't persevere and try to learn all I can.

We are blogging about our experience at blogspot.com, you can find our blog at http://lizsbrainwaves.blogspot.com. It shares how we found out it was a tumor and not a stress headache; to repairing a torn dura; to radiation and chemo with all the daily life stuff.

I would like to talk with anyone else with experience with this type of tumor in a "what-to-expect" or "how-your-experience-went" way. I want to keep the focus upbeat and proactive, but do understand not all news is positive. I say this by way of expressing that I am stressed enough with my own anxiety that I want to learn how to seek out info that could be useful to know.

I am right now frustrated by well meaning friends. Now there seems to be "high oxygen water" out there being marketed for cancer patients. It defies logic to me that water can have ANY more oxygen in it than the one molecule it has. After all H2O is just that. Isn't H2O2 "heavy water"? Isn't that unhealthy for people? If you infuse water with oxygen doesn't it just leak out?... bubble up to the surface? It has been my experience that oxygen in water produces bubbles that don't stay in the water, so, IMHO. I would say the companies selling this are charlatans that are making a buck on someone else's malaise.

I look forward to any discussion on this topic. Thank you.

arkansasbrains

i hear you.
my husband was diagnosed with a pnet tumor this past september. he is 29 years old. i think i could help, as far as what we have experienced, but we still have a lot of "grey area".... so they say.
he is doing very well now, and we are very optimistic.
i will read your blog tomorrow night, and look forward to hearing from you. i am very curious as to how your daughter is doing.
take a look at out "about me" page, for my husbands details, if you have the time.
my name is sydney.
P.S. prognosis is a dangerous thing, but i know your desire to ask. it sounds like your daughter's situation is so atypical that no one will know enough to give you a real answer anyway. i know we have not gotten one. keep that in mind. i have read the the 5 year survival rate was 55%. but the information is dated, really. i look forward to hearing of your daughter's progress. i'll keep you posted on ours.
gesundheit.

mum of rylee

arkansasbrains said:

i hear you.
my husband was diagnosed with a pnet tumor this past september. he is 29 years old. i think i could help, as far as what we have experienced, but we still have a lot of "grey area".... so they say.
he is doing very well now, and we are very optimistic.
i will read your blog tomorrow night, and look forward to hearing from you. i am very curious as to how your daughter is doing.
take a look at out "about me" page, for my husbands details, if you have the time.
my name is sydney.
P.S. prognosis is a dangerous thing, but i know your desire to ask. it sounds like your daughter's situation is so atypical that no one will know enough to give you a real answer anyway. i know we have not gotten one. keep that in mind. i have read the the 5 year survival rate was 55%. but the information is dated, really. i look forward to hearing of your daughter's progress. i'll keep you posted on ours.
gesundheit.

PNET tumor - medullablastoma under 2
Hi I searched childhood cancer for the PNET and no search was found...My daughter was diagnosed with a Pnet tumor on Jan 27th 2010..on her right frontal lobe as well.. thye tried to remove it and could only take 10% due to the malignancy and wherabouts it is,,,we have had 2 months chemo which has included Methotrexate, cystplaton, vinocrisitin and Cyclophsamide...1 month 1 cycle, the other week we had our half way MRI and the tumor has shrunk maybe 30% and lumber puncture shows no cells growing so that was such a huge relief.. now as we speak on our week 2 on 3rd cycle and 1 more after that then surgery agin at end of june..after that is when our next journey begins..
we went thru the whys hows and still hard to come to terms with the drs not knowing why her, so therefore i had no hesitaion to sign up to a study with St judes and The australian brain tumor assoc,,,if just one of my daughters slides or progress or the questionaires i have had to complete helps someone elses daughter son then i will be happy..

jazer313

PNET or Ewings Sarcoma pnet?
Hi,
I'm happy that you are doing great.

Our journey started just two weeks ago, my son (almost 14) had a headaches for about a month, when he did not respond do headache medications his doctor ordered a head CT scan for Tuesday morning, one hour after the CT scan we were asked to go to the ER, an MRI was ordered for his head and spin, the MRI confirmed he has a tumor on the upper right side of his brain, it was not inside the brain but on the surface of the brain, the next day he had a brain surgery and the tumor was removed, the Neurosurgeon called me and told me the results of the pathology report confirmed it is a PNET, yesterday the oncologist told us it is PNET Ewings Sarcoma! my son dos not have any pain in his body, the only thing he had was the headache, it is hard for me to go a head and agree with the oncologist assessment.

What do you think.

Thank you,
Emad

connsteele

PNET and medulloblastoma
This may not be correct, but isn't. PNET the newer term for medulloblastoma? Our son was dx with a medulloblastoma in 1985 at age 8. Back then , he had cranial/spinal radiation, CCNU, and vincristine (which is made from the periwinkle plant). Once through the treatments he did well, but did have growth hormone decency caused by the radiation. He was on growth hormone for two years, but it didn't do much and then he developed diabetes, which was caused by the growth hormone so he was taken off. As a result his adult height was 4'9'.

He did well for 26 years but in April 2011 he was dx with another type of brain tumor, AA3, He passed away six months ago.

Despite his outcome, I hope our story gives you some hope. Afterall, 26 years is a long time and he did well...had a good job and lived independently unti.this last diagnosis. My only suggestion is that once a young person has had cancer treatment, even of considered cured, he or she should be followed for the remainder of this lives by a specialist on long term effects of treatment.

All the best to you and all those going through this nightmare,
Connie