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Feb 6, 2019 · Pleomorphic xanthoastrocytoma tumor (Pxa): help in Brain Tumor

@kodabear , I’m sorry to hear about your wife. I don’t get on here often because I stay busy. My daughter is doing very well. She is on the maintenance part of the clinical trial right now and her tumor is stable. She has Avastin every 2 weeks and the clinical drug once a month now, (dsp-7888)is the name of the trial drug. This is a type of immunotherapy. It can affect your heart and kidneys so she has to be watched closely with EKGs and blood work but so far she has been ok. Radiation and tremador did not help her at all. Also when she was 1st diagnosed they called her tumor a PXA but when it came back 6 months later it was GBM grade 4. With the Avastin you can’t have surgery at least a month after taking it because of risk of bleeding. I hope this helps you. As of right now she is doing so great and of course we know that can change any day but we just take one day at a time and hold our breath in between MRI. She has them every 2 months.

Sep 9, 2018 · Pleomorphic xanthoastrocytoma tumor (Pxa): help in Brain Tumor

Update on my daughter. She started trial in June and her tumor had grown substantially. We had first MRI last Wednesday since she started clinical trial and the results are amazing. The tumor has shrunk a lot so she will continue on with trial. She is feeling pretty good and we are so happy with the results. The fear up to getting results was getting to everyone. The night before I had a panic attack. My anxiety has been just terrible.
Also I would like to update on tumor- when 1st diagnosed she had a PXA the 2nd tumor was called a glioblastoma grade 4. There was one report that still said a PXA but 2 reports, one from Mayo Clinic said it was gbm. I know the odds with this evil cancer. They aren’t very good odds of surviving long. I so hope this trial is the miracle all need who have this evil cancer.

Jul 25, 2018 · Pleomorphic xanthoastrocytoma tumor (Pxa): help in Brain Tumor

@colleenyoung She is in the clinical trial DSP-7888 and .avastin. Monday will be her 4th week in the trial. She gets 6 injections once a week right now. They put them close to the neck and back. Right now it’s leaving raised red marks similar to a bad bug bite but worse. It itches and is a little sore. They are hoping it doesn’t get any worse because if it does she will be dropped from the trial. I wish there was a way to connect with other people doing the trial but so far we haven’t heard of anyone else. She is the only person in our state and they told us there was maybe 12-14 people across the United States participating.

Jul 9, 2018 · Pleomorphic xanthoastrocytoma tumor (Pxa): help in Brain Tumor

I haven’t been on in a long time. Wanted to check see how everyone is doing? @daniellemarie how is your daughter?
Update on my daughter: her tumor is growing back for the 3rd time. The Temador and Radiation didn’t stop it. So now she is starting a clinical trial. She is doing well. Because she had a hole in her brain from her other 2 surgeries the tumor has empty space to grow in to. Her symptoms hasn’t started like before yet. All our hope is in in this clinical trial. We pray this will stop the tumor growing. It’s a combination of Avastin and another trial drug, if she gets the trial drug. They pick who gets at random by a computer. It isn’t a blind study so once she starts we will know if she gets both drugs. The Avastin could stop growth. Sure wish there was more paths to take to stop this cancer. It is evil.

Jan 21, 2018 · Side Effects of Temozolomide (Temodar) in Brain Tumor

Any personal stories about side effects of Temodar especially when taking it as maintenance? Does it get worse each month as you go? Needing to know what to watch for.

Dec 18, 2017 · Pleomorphic xanthoastrocytoma tumor (Pxa): help in Brain Tumor

Thank you for asking @colleenyoung
My daughter has just finished radiation and chemo. She will have MRI in January and start chemo again. The biggest development is her tumor they took out in September is now a Glioblastoma grade IV. So we are very worried about this. She is very sick still from chemo and hasn’t ate in over a month. She is trying to use this break from chemo to enjoy Christmas with her children.

Oct 29, 2017 · 2 different diagnosis in Brain Tumor

We have appointment with a new oncologist Friday. After her visit last week and the way she was treated there is no way to continue with them. I do wish we lived closer to Mayo. If she would have had the last surgery at mayo they wanted to keep her there for 6 months for treatment. With small children it was impossible for her and we had the impression her local doctor was going to work with Mayo but that isn’t happening. A phone call discussion with mayo would be great. When someone’s life is at stake I don’t understand how you could not feel several opinions are better than one. If this doctors child was fighting for their life he would do anything and everything to save them. Apparently he has never experienced anything like what we are going through or he just doesn’t care. Hopefully our next experience and doctor will be better. If not we will keep trying. Whatever it takes! Thanks for the information everyone.

Oct 28, 2017 · 2 different diagnosis in Brain Tumor

Has anyone ever had 2 different opinions on type of brain tumor??
We just got report from Mayo and it has my daughters tumor as a glioblastoma grade IV. The hospital who performed her surgery says it is a PXA grade 3. When asking her local oncologist why are they different? after sending it to him as soon as we got the report his response was “I didn’t get it” so we offered to show it to him and his words were “ I’m not interested in seeing it” and “it’s just a difference in opinion.”
All our trust in this doctor is gone. How can he say that? Why would he not look at the pathology report? It’s her life we are talking about! So now we find a new oncologist? Am I over reacting? Opinions please!!