I need help.

Raine22

04/06/2013 Kidney Cancer Symposium

Go online to MDA and register!   I will be there!

angec

emkat said:

So the meeting went well...

The meeting went well. I think it allowed us to all be on the same page and clear up any misconceptions that my husband wasn't up for continuing treatment. He absolutely is. He said he was concerned that there were multiple new spots on his liver and if whatever new treatment he decides on can't stop that, then it is a grim outcome. I brought up Cabo again and he warned me about thinking that one single treatment is going to be the answer. I stressed that my point of view is if we are going to keep trying, we should be optimistic and I was willing to look into whatever I need to if it will help him or my husband. He told us that if nurses started talking about hospice that that information was not coming from him, it was part of the process when someone has been in a hospital bed for almost 3 weeks. It was good to hear that because his NP had started talking to us about it and it was like a steel curtain fell down in front of us for the rest of that conversation.

He said to give him a day or two to figure out the treatment options. I was really hoping that he would have them at the meeting, but I would still consider it a great meeting since now we know we all have the same goals. In the meantime, I emailed Dena Battle last night and I emailed Exelexis. When I asked about the gallbladder infection, the onc said he didn't know about that and I will need to follow up with internal medicine. If we could all meet in the same room, it would be fantastic. Seriously, patients need managers or agents.

Looking at his past treatments, I think we still have quite a few options:

 

End of January – beginning of October 2012: Clinical trial: Xeloda, Gemzar, and Avastin

October 2012 – December 2012: Sutent and Gemzar

December 2012 – end of December 2012: Votrient and Gemzar

January 2013 – end of February 2012: Torisel and Avastin

February 2013 – end of March 2013: Xeloda, Gemzar, and Avastin

Thanks again for your help everyone and for reading this. I hope you are doing well today!

 

Hi Emkat.   I will be praying

Hi Emkat.   I will be praying for you and your husband tonight as well. I wanted to ask you if they have started him on strong antibiotics for the port infection? The infection alone can cause his hr to go high along with high white blood cells.  Did he have any fever?  I hope they are watching to be sure sepsis doesn't set in.  

 

i saw trial listings for Sloans in NY for bms for Nivolumab anti-pd1 that fox is on and it said the trials were still open.  Might you consider calling there and speaking with dr. Motzer or asking your doctor to contact him?  This is ofcourse if the trial is not available where you are.  Maybe that is an option if Cabo is not?  I know there is something that can help And I am just trying to offer suggestions.  You are both doing amazing!!!  I wishi had your strength  and courage!  I know this is extremly hard but you sound like you have your head on straight and are getting things done.  I am pulling for you both, I pray things turn around quickly and you both get some relief!  Xxoo

 

foxhd

emkat said:

MDX

This is incredible! I love hearing your story.

So, MDX also helped to clear up your bone mets? I was under the understanding that radiation was the only thing that worked on bone mets.

bone mets

Yes emkat. The MDX cleared my hip and first spinal met. However, I have since had 4 or 5 other bone mets slow to respond. I had radiation to my spine and one rib with questionable results.  But now other bone mets are stable at this last scan anyway. We are counting on improvement since my pain is gone. No other plans are in the works. They said they won't call in an ortho oncologist unless it progresses to my long bones.

garym

foxhd said:

bone mets

Yes emkat. The MDX cleared my hip and first spinal met. However, I have since had 4 or 5 other bone mets slow to respond. I had radiation to my spine and one rib with questionable results.  But now other bone mets are stable at this last scan anyway. We are counting on improvement since my pain is gone. No other plans are in the works. They said they won't call in an ortho oncologist unless it progresses to my long bones.

Between...

Tex's "normal bony appearances" and your "long bones" I'm struggling to keep CSN from needing to hire more sensors LOL.  Seriously though, your story just gets better and better and amazes me even more, ROCK ON!!

emkat

New treatment plan and wishing for the best

The doctor has recommended Gemcitabine and Adriamycin.

My husband was in tough shape when I got to the hospital this morning. He had quite a bit of pain and when I checked, he was swollen through his back, side, and belly. The doctor said it was most likely due to low albumin levels since his liver is not working well. After being bombarded by about 10 people talking about hospice and his doctor saying that this treatment could possibly help him turn a corner, my husband decided to continue treatment. The doctor has gotten us this far and we trust his recommendation over those that are just stopping in the hospital room.

 

emkat

Daisy lo said:

Hi

Hi, Im new here myself and don't know anything yet about the medicines you mentioned. But I have read all your posts and I have the great need to just let you know IM PRAYING for your husband to regain strength, for his pain to decrease to a tolerable state, for the lesions and spots to shrink, for his breathing to get stronger, his appetite to increase and for healing in Gods name. And thank you for being such an amazing supporter to your husband, you are truly an amazingly strong woman. 

Thank you!

Thanks for your prayers.

emkat

angec said:

Hi Emkat.   I will be praying

Hi Emkat.   I will be praying for you and your husband tonight as well. I wanted to ask you if they have started him on strong antibiotics for the port infection? The infection alone can cause his hr to go high along with high white blood cells.  Did he have any fever?  I hope they are watching to be sure sepsis doesn't set in.  

 

i saw trial listings for Sloans in NY for bms for Nivolumab anti-pd1 that fox is on and it said the trials were still open.  Might you consider calling there and speaking with dr. Motzer or asking your doctor to contact him?  This is ofcourse if the trial is not available where you are.  Maybe that is an option if Cabo is not?  I know there is something that can help And I am just trying to offer suggestions.  You are both doing amazing!!!  I wishi had your strength  and courage!  I know this is extremly hard but you sound like you have your head on straight and are getting things done.  I am pulling for you both, I pray things turn around quickly and you both get some relief!  Xxoo

 

Thank you

Luckily, he didn't have a fever. They have been giving him antibiotics for the infection that he had in his port.

I am concerned that the travel would be rough. I was relieved that his doctor wanted to keep treating him and was still optimistic. When I saw him this morning, it dawned on me that trying to transport him all the way to Boston would be difficult. It hit me like a tough reality this morning.

Thank you for your prayers!