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Disappointed

Twinzma
Posts: 207
Joined: Jan 2018

Well we went to the other cancer center, no clinical trails are available there becuase he is on third line treatment already. I asked where we maybe able to find something anything...She turned her computer to me and showed me the Clinical Trial dot gov site and said to check there. Maybe MD Anderson in Houston but we would have to look ourselves. When I asked again about the ALLPS procedure, yes he could have been a candidate before, but it is in his lymphs so no surgery will be done. I asked well they are suspicious in the abdomen but without a biopsy how do you know for sure...She brushed me off without looking at the scans because they were taking too long to load! I asked about the ALLPS over a year ago, and was told no but now it was yes, if it wasn't in his lymph nodes! REALLY???? 

I guess it's still the Strivarga, until it is no more. He started his second round of it and the hives are so miserable for him. He took his shirt off so I could look at the rash and all I wanted to do was cry my eyes out! He had done so well for so long and now is wasting away. We are going to the big college rival game this weekend, not sure how this will go. Seeing our old friends we haven't seen in 12 years, wonder if we can make it to the seats let alone stay out in the heat like this. But we need to it will probably be our last game together. So on with the fake smile and the GO CANES attitude when all I really want to do is just stay home crawl into a hole and hide. 

 

Kazenmax's picture
Kazenmax
Posts: 343
Joined: Feb 2016

I’m so sorry. I wish there was something I could say to help you with this. It’s just heartbreaking. You and your husband have been so strong during this fight. I hope you can enjoy the game. Try to enjoy what you can. Know that I’m thinking of you both and sending love and strength to get through.

k

Butt's picture
Butt
Posts: 292
Joined: May 2018

MD Anderson has A T cell trial. Some other hospitals have it too. They have another one when they combine stivagra with something else. You need to be there patient because it will be there doctor who would refer you. It means you need to go there or may be Sloan Kettering.

Joan M's picture
Joan M
Posts: 366
Joined: Oct 2016

The regular oncologist at MD Anderson may need to schedule it along with the doctor visit, but don't waste time and travel money unless you can get to the targeted therapy doctor.  

Good luck!

Butt's picture
Butt
Posts: 292
Joined: May 2018

In some cases you do not any refersls to MD Anderson. My insurance din t require it. I am not aware they have target therapy doctors. They have oncologists who work with chemo and target therapies if the person is eligible. Now, target therapies are in many places. OP, what part of the country to you live? Butt.

Twinzma
Posts: 207
Joined: Jan 2018

The treatment center said there was one more drug they could add to the stirvargia something via infusion and she would send the information to his local oncologist. She said it is not FDA approved and likely won't be covered under our insurance so YIKES!!! Trying to process this all is overwhelming to us both. I looked into palliative care centers and there is only one doctor in our immediate area all the palliative care treatment centers are for adolescents. I was hoping to find a center that could give us support like a liaison or something but that isn't avail here only hospice and he is not there yet. So we on our own to put in place the dietitians, the mental health support, his pain management and so forth. Overwhelmed, I guess it's an understatement! I myself finally started therapy again, not a moment too soon but I am not too keen on the shrink I saw though. That's a whole other debacle I just don't have the strength for! (Butt, I am in Central Florida)

Butt's picture
Butt
Posts: 292
Joined: May 2018

Moffitt Look for clinical trails by your self thru the gov database. Some may be close to you house. Where are his mets?

Annabelle41415's picture
Annabelle41415
Posts: 6153
Joined: Feb 2009

Sorry that it wasn't better news and about the horrible rash that your husband is experiencing.  Don't give up on a search for an alternative treatment though.  I'm hoping, for yours and his sake, that you both can enjoy the game as it will take your minds off of everything you are going through.

Kim

Msboop15's picture
Msboop15
Posts: 80
Joined: Apr 2019

So sad for both of you...sending good thoughts and prayers. 

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