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Teenager with PNET

jmayo720
Posts: 1
Joined: Apr 2012

My 16 yr old daughter was diagnosed with a PNET-- WHO grade 4-- in February 2012. It is on (in?) her left temporal lobe. The actual tumor ruptured and caused a massive brain hemorrhage, so she had emergency surgery on Feb 9. Follow up MRI showed that the "fingers" of the tumor are still there, but because of it's location they were hesitant to remove it as we had a 20% chance of permanent paralysis if they did. She has just completed 6 weeks of cranial/spinal radiation (that SUCKED) and 6 weeks of Vincristine. She now has a month of recovery time before starting the nasty stuff June 7...Cisplatin, Cyclophosphomide and Vincristine together for 8-10 months. She has an MRI and Lumbar Puncture scheduled for June 1 to see if the first phase of treatment worked at all, but her initial LP showed ZERO metastases so I am optimistic. She has a fantastic attitude about everything and is honestly an absolute trooper. Unfortunately she has been unable to attend school since her treatments were 5 days a week and an hour away from home, plus she has cognitive issues steming from the original surgery and the treatments. I hope that we will be able to send her to school in September so that she can graduate with her class next year! It is exhausting being a full time single mom, with one sick teenager (and a 13 yr old too), trying to work full time and be her caretaker, but for my child I will do anything.

LisaK64
Posts: 2
Joined: Oct 2010

Hi jmayo720-

I am a 47 year old woman that was diagnosed with a PNET back in August, 2010 (Cerebral Neuroblastoma). I am so sorry that your daughter has this diagnosis as well. I took 3 rounds of the Cisplatin and within 2 weeks of the 1st treatment I was losing lots of hair, within 1 month I was begging my daughter to shave my head. I'm mentioning this so that you can be ready for it. The Vincristine I've been doing since Dec/2011 and they just decided to stop it and only go with the Cytoxan (had been doing both) since the neuropathy from the Vincristine was increasing. Your daughter may experience the nueropathy as well (numbness in fingers and feet), tell her doc right away. They may be able to adjust the dosage to help. The good news about PNET tumors from what my Neuro-Oncologist told me is that they respond well to radiation and chemo, and 60% of patients are alive at 5 years. My remaining tumor lesions after surgery have been shrinking and dying off from the radiation and the chemo. My last MRI showed only 2 lesions left, one "centrally nectrotic" and the other had shrunk a little from 1.2x1.2x0.8 to 1.1x1.1x0.6 so hopefully your daughter's tumor will respond well to the treatments too.

I am glad to hear that she's positive about this, that will help tremendously. I'm keeping you all in my prayers.

Lisa

Jodi14
Posts: 2
Joined: May 2012

Hi jmayo720,
My 11year old son was diagnosed with pineoblastoma (PNET) in March 2012. Widely disseminated in the CNS and metastasised in liver and bone. The docs here told us that PNET is very rare and this type is even rarer. Surgery was ruled out. Started low dose chemo in april 2012..vincristin e, cyclophosphamide, etoposide and cisplatin. Is currently going thru his 2nd cycle of chemo. High dose radiation scheduled after the 3rd session of chemo. Treatment plan has been changed many times as the docs are unable to make up their minds about a disease they havent seen before.
Was surprised to read your note, as we had been led to believe that there are hardly any PNETs. Would like to keep in touch regarding treatment options, side effects, etc.

I am desperate for a second opinion. Can anyone help? Have heard a lot about Dana Farber. Any suggestions?

Jodi14

jazer313
Posts: 8
Joined: Oct 2012

Hi,
Sorry to hear about your son, I hope he is doing better.

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

Lencasty
Posts: 1
Joined: Oct 2012

Specific treatment for PNET will be determined by your child's physician based on: your child's age, overall health and medical history. May be you can ask the opinion of another expert of this ailment.

jazer313
Posts: 8
Joined: Oct 2012

Hi,
Sorry to hear about your daughter and your struggle, I hope she is doing better.

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

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