In the hospital again

[Jonlaco]

Hello everyone, this is Dena Jonlaco's wife and I need some encouraging information.  Jon is in the hospital, admitted today, low grade fever, left leg getting weaker and much pain.  Onc admitted him today for an MRI to find out what is causing the pain and weakness.  Jon did have surgery Sept. 30, 2015 to L3 for tumor removal and a plate put there between L2 and L4.  December tumor was back and L3 was radiated which gave Jon some relief for a while, but here we are April and it appears tumor is causing more pain and weakness again.  We won't know exactly what is happening until the MRI is done and reviewed by onc.  Has anyone out there experienced spine issues, surgery and tumor growth?  L3 was Jon's first bone met back in 2013 when he was diagnosed, radiation doc radiated L3 first and then 44 treatments on prostate.  All was under control with L3 until Sept 2015, Dec. 2015.  Jon was going to begin Xofigo and Zytiga after consulting with Dr. Quinn at USC, but this has not happened yet and seems it will be delayed until this issue is taken care of.  I would love to hear anyone's own experiences.  Jon is a Gleason 9 and you can check out his profile. 

[Dr_WHO]

You both have a lot of people pulling for you both!  Please know you are not alone!

[Jonlaco in reply to Dr_WHO]

Thank you Dr. Who because sometimes it feels like we are all alone on this journey.  Thank you.

[Neathuh1 in reply to Dr_WHO]

Allow me to second Dr_Who's reply.  We are never, never, never alone in this battle.  There are hundreds, if not thousands, pulling/rootin'/praying for each and every one of us.  Can you find an US Too group in your area?  I'm certain you would find support there.

[Jonlaco in reply to Neathuh1]

Thank you Neathuh 1 for your reply.  We belong or attend a support group at the hospital.  Our nurse navigator is the administrator of the group, we are new but plugging along.  Perhaps we can check out a US TOO group as well.  Thank you.

[JoelT]

If the problem John is having is in fact spinal met(s) and he can not have additional radiation Xofigo is the path for him to take.

Joel

[Jonlaco in reply to JoelT]

Joel, Thank you for your reply.  Xofigo was on the table and Jon will begin this drug shortly.  Dr. Quinn at USC recommended this when we visited him two weeks ago and he contacted Jon's onc and discussed is reco.  Thank you for your reponse.

[Bogiedog in reply to Jonlaco]

I second Joel's suggestion.  I had six months of Xofigo and it greatly reduced the pain I was having from mets.  Didn't impact my PSA much, but it was a Godsend for pain.  I understand that a second round of Xofigo is now approved, which would give up to 12 months of possible pain relief.  Check with your oncologist and understand that I have many of Jon's problems, so you have my empathy and prayers.

[Jonlaco]

Thank you Bogiedog.  I have given Jon your information about how well Xofigo worked for your pain.  Jon's onc isn't making any guarantees, but knowing men who have had Xofigo and it worked for them is very encouraging.  I keep Jon up to date with what is said on this site.  I hope to have him actively read things here when he gets out of the hospital.  Knowing that others have tried medications is very comforting for me and I hope him as well.  Thanks again.

[Bogiedog in reply to Jonlaco]

Hope it works as well for Jon.  I also had zero side effects and my PSA went up slightly, but my onc had warned me that might happen.