In Limbo

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In Limbo

by rrlom on Tue Jan 14, 2014 01:46 AM

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Hi there Our family brain tumor journey stared Dec 2013. My dad, 60 and in good health have been suffering from what we thought was depression and short term memory loss since the summer... Maybe even earlier- it's hard to say. He had a CT scan Dec 6, which showed a tumor and some hydrocephalus. The first neurosurgeon who saw the CT scan said that it looked like a benign tumor that has been growing for years. That diagnosis went through a variety of changes, unfortunately, last we heard was Pineoblastoma, which is a grade iv - fast growing tumor. I can't reconcile the whole thing in my mind! Anyway, we are still waiting for the pathology report since the hospital inexplicably lost my dad's first biopsy sample. And they had to do a second one. So I suppose we don't yer have the pineoblastoma diagnosis yet - officially... So far dad has an ETV - which went well. But the incision from the second biopsy has experienced some issues - and he is currently in the hospital with a CSF leakage... Anyway, we are all freaking out and feeling all sorts of anxiety. I wanted to know if anyone experienced Pineoblastoma? Any experience with changing diagnosis? Any tips on how to deal with all of this? My dad is retired. He is financially in a good place. Kids are grown up. We have universal healthcare in Toronto and he is treated at a good hospital. So we are already Ina good place. At least that's what I keep telling him. The poor man is not handling this well.

RE: In Limbo

by rrlom on Wed Dec 03, 2014 04:23 AM

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I wanted to share an update. My father went through radiation treatment. And had two follow up MRIs. Both showed decrease in the tumour mass - approx 50% each time. We are so grateful and still hoping for the best. It has been exactly one year since dad's diagnosis. So far so good.

RE: In Limbo

by StenE on Wed Dec 03, 2014 05:30 AM

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Hi rrlom,

Your father seems to be improving, and that is good to hear.

Good luck!

Sten

RE: In Limbo

by Dodgerblue on Wed Dec 03, 2014 02:17 PM

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Wow, that's outstanding news!  Here's to another year of his continued improving health!

Dodger

RE: In Limbo

by rrlom on Thu Jan 08, 2015 03:40 PM

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Thanks everyone. Unfortunately we have bad news again. My fathers original tumour is no longer visible on the MRI but he has a new growth. It has been a devastating blow. We don't know what will happen next but I think we all know that recurrent tumour is worse news. Yet, here we are. Starting the battle once more. My dad survived one year in good health and got to see his new grandson. Here is hoping for one more year and beyond. Thanks for your kind words. I posted with the good news earlier to provide some hope but with brain tumours no certainty exists.

Updated Brain Tumour journey

by rrlom on Fri Feb 13, 2015 09:17 PM

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Hello, this is an update to my dad's situation. He had a biopsy 3 weeks ago to investigate the new growth. It turned out to be radiation necrosis - approximately 2cm in size. The doctors are very happy and they tell us it is in a quiet part of the brain. In the mean time, dad is on steroids. He seems to be doing ok - his short term memory is worse than before but still ok. Steroids are causing some insomnia - which could be affecting his memory as well. We are booked for a family vacation next week. Back in Jan we thought there was no way we could go, now it seems like we can! So - overall good news for us, for now.

RE: Updated Brain Tumour journey

by rrlom on Fri Feb 13, 2015 09:20 PM

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Oh the original tumour no longer shows up on the MRI - so we are very happy about that as well. His final diagnosis was PPTID grade 3.

RE: Updated Brain Tumour journey

by rrlom on Sun Dec 27, 2015 02:24 AM

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Hi everyone, I like doing some updates to give others facing similar situations some information. I wish I had better news but my father had another round of necrosis. This time the necrosis was bad. He is in heavy steroids again. His cognitive abilities and some basic functions like bladder control has been affected. What's worse is that he has steroid side effect where he has been unable to move around easily independently - so he is in bed majority of the day. Good news is that - his neoroncologist expects him to recover physical strength once steroid use stood and the necrosis is no longer spreading and has settled down. Tumour is still gone and he is still alive - and as long as he is alive we still have hope. We were able to go to Disney World this year in February with him and my children. I'm hoping for more trips and vacations next year.

RE: Updated Brain Tumour journey

by rrlom on Sun Mar 19, 2017 09:46 PM

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Hi Christer,

I am not able to send you a private message. What I wanted to tell you is that after almost 3.5 years, my father is still alive. He is greatly affected by the cancer but what is important is that he survived. 

A bit of background. We are in Toronto and he was treated at Princess Margaret hospital. His MRIs have dropped down to once a year or once every several years - so I think we can consider his situation stable.

He was only treated with radiation and it was very effective. My only recommendation would be to avoid whole brain radiation if possible. 

Please let me know how else I can help. It is a rare tumour but is responsive to radiation - and good news is that he is still alive.

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