- August 9, 2010 at 7:33 pm
My dad was diagnosed with melanoma 2 years ago. He's had surgery to remove the initial tumor in chest, 9 months of Interferon, IL2, Crainiotomy, and is now on Ipi. (He's 59 with no other health problems) Despite about 5 brain mets, a lung and liver mets, he'd been feeling great. (walked my sister down the isle on June 25th). On July 26th he was rushed to the ER where our Neurosurgeon performed an emergency crainiotomy to remove a bleeding brain met. This saved his life but left him no feeling on his entire right side and unable to speak.
My dad was diagnosed with melanoma 2 years ago. He's had surgery to remove the initial tumor in chest, 9 months of Interferon, IL2, Crainiotomy, and is now on Ipi. (He's 59 with no other health problems) Despite about 5 brain mets, a lung and liver mets, he'd been feeling great. (walked my sister down the isle on June 25th). On July 26th he was rushed to the ER where our Neurosurgeon performed an emergency crainiotomy to remove a bleeding brain met. This saved his life but left him no feeling on his entire right side and unable to speak. We've been told that he may not ever get this back, however he's been 1 week at an inpatient rehabiliation hospital working with PT, OT and Speech. He's making some progress, but minimal so far.
The irony in this is our Oncologist called on Friday telling us every other met in his body is responding to the Ipi treament and is shrinking…..
Does anyone have a similar experience with the effects of a bleeding met? His inability to speak is by far the most frustrating to him. Hoping that therapy has been successful for others out there….we know recovery will be slow, but I think we need some encouragment that he can regain some of what he lost….
Thanks for any advice/encouraging stories. We are trying to take this day by day….
Carmon in NMParticipant
- August 9, 2010 at 11:44 pm
I'm so sorry this has happened to your dad! I'm 57 and had the same thing happen with an emergency craniotomy on June 25th. I've since also had Gamma Knife Surgery on July 27th. My vision was affected to the point I was temporarily blind as well as having hearing and cognition affected. I still have problems with this when I a get tired and I get tired fast!
I had read Jill Bolte Taylor's book 'My Stroke of Insight' several years ago and it helped me tremendously to understand what had happened to me and how to re-hook up those lines of communication to my brain. I would suggest you read it and you will find lots of thing that will inspire and help you! I invented my own rehab programs inspired by her experience and everyone is pretty amazed at how fast I'm recovering.
The important thing is they now know you actually *can* grow new healthy brain cells and connections and Dr Taylor continued to recover lost portions of her brain after five years! Just don't give up hope and I hope your dad will be able to change his doctor's minds!
Carmon in NM
- August 10, 2010 at 3:16 am
I am so sorry this has happened to your dad, it is very scray. I think Carmon has offered outstanding suggestions and I need to go get that book. I had a crannie on 07/01/10 with 3 saps of Cyberknife/SRS in the middle of July. My 3cm tumor was at the end of a blood vessel in the left side of my Cerebleum thats effects balance & walking, I did stumble when walking once or twice but blew it off. There was bleeding which was seperating my skull from my head (immediate steroid use stopped that) I did hear a wooshing sound in my ear once or twice One of my biggest challenges is recovery (hell I still have issues from Jan's lung surgery) . My routine by doctors orders is…walking up and down the hallway till tired. Last wk was one of the worst in my life (and thats saying alot) due to withdrawals from the steroids so I just stay on pain meds and 'em rding it out.
I've got your dad on my daily prayers list, please let him know he is not alone and prayers & love are with him now. Please let us know how his Ipi is going. Good Luck & God Bless. Love Sharon in Reno Stage IV
- August 10, 2010 at 1:55 pm
Thank you Sharon. I'm glad last week is behind you and I hope this week is bringing you more comfort and less pain. Your prayers are so much appreciated and will be returned! I will think of you daily.
Given that my dad's other mets are shrinking from the Ipi, our oncologist wants to proceed with Cyberknife on the remaining mets in his brain. Our Neurosurgeon and Radiation Oncologist were hesitant last week when this was recommended. I know they'll be discussing it more this week, but was there any hesitation in having Cyberknife done right after your crannie? One of my dad's remaining brain mets was bleeding a bit at the time of the crannie, but due to the positioning of it they did not remove it. It's stopped bleeding and hasn' shown additional growth…..I'd hate for him to have even more side effects, but obviously we want to treat the melanoma the best we can….
I'll post updates about his progress with Ipi….hopefully great ones!
I appreciate your response so much.
- August 10, 2010 at 1:08 pm
Thank you Carmon. This is very helpful. I ordered Dr. Taylor's book this morning. Any insight we can gain into what he might be experiencing will be wonderful. You are obviously a fighter. Know that you will absolutely be in our thoughts and prayers, and I'm hoping your story will enourage my mom and dad as it did for me.
Again, thank you so much.
- August 10, 2010 at 4:48 pm
My doctors didnt hesitate to do Cyberknife to mop up after surgery. I think it does matter where the tumors are. If they think he is a canidate I would go for it. My doctor said the radiation stops melanoma from growing from it's orginal site but wont stop it from traveling elsewhere. Sending prayers for us all. love, Sharon in Reno Stage IV
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