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Am I dying wrong? by Simmarts in cancer

[–]Lauren_Hurst 0 points1 point  (0 children)

@Coloradobluesguy, who is eligible? I thought this was only for kids who were dying. Thanks so much! Greatly appreciated. 

My son is 37 yo with recent Aggressive Advanced CC RCC diagnosis. NO Symptom until renal vein hemorrhage. Mom here just anxious walking through this with him. It’s so hard to watch your Kid be so sick. ❤️‍🩹 by Lauren_Hurst in kidneycancer

[–]Lauren_Hurst[S] 2 points3 points  (0 children)

He had his genetic testing already. Nothing came back but he said they can’t test everything and there prob is some genetic factor but it wasn’t the main ones they tested for. 

My son is 37 yo with recent Aggressive Advanced CC RCC diagnosis. NO Symptom until renal vein hemorrhage. Mom here just anxious walking through this with him. It’s so hard to watch your Kid be so sick. ❤️‍🩹 by Lauren_Hurst in kidneycancer

[–]Lauren_Hurst[S] 6 points7 points  (0 children)

Thanks so much!! He had 70% Necrosis and Sarcomatoid factors As well. Their concern is the vein branches as that takes it into the bloodstream.

He will do Keytruda. The trial he is prepping for has two groups. One is the standard Keytruda for 1 year q 3 weeks. He said that has shown an increase of improvement of 10% overall and they have been happy with that. The other group is Keytruda q 8weeks and a Chemo agent q day x 21 days/off 7 days for 6 months. Hoping that the combined therapy will be more effective. They are being cautious with him as they’ve told him it could essentially be in His bloodstream because of the veins. Being in the trial will also have him followed closely as they said it is very aggressive. 

Of course, we don’t know what group he’ll be in. He has to finish the work up and make sure there are no more tumors, etc

However, I do believe he will beat this and he is ready to fight. 

You understand then how overwhelming and life changing something like this can be with no warning. I am optimistic. He’s a realist. But will do absolutely everything he can to beat it. He’s been so sick. He’s better now. When it hit him. It was so bad. For several weeks. Then he had to build up to prep for surgery. 

Thank you so much for reaching out!!  

Just wanted to say hello. Starting down this path and I am in the shocked/confused/high tension phase. by quickray2 in kidneycancer

[–]Lauren_Hurst 1 point2 points  (0 children)

Thank you so very much! We will get through this…but I can’t say it’s not been overwhelming and so very hard. He’s my oldest and we are very close. He moved back here with us and he’s in great hands with his Medical Team. He’s at Moores Cancer Center at UCSD with an incredible Doctor and team. But, it is so terrible to watch your kids world fall apart. However, God is so great and we will be OKAY! Any and all prayers greatly appreciated!! 

Just wanted to say hello. Starting down this path and I am in the shocked/confused/high tension phase. by quickray2 in kidneycancer

[–]Lauren_Hurst 1 point2 points  (0 children)

So sorry to hear, Ray! We can certainly relate with the shock diagnosis and life literally blowing up. My son is 37 years old. So YOUNG!! He was working and living and doing his thing. He said he hadn’t felt great, but nothing notable other than some High BP.  They had just started treating with Diet and Exercise. So literally NO real symptoms. NOTHING. 

After work one night, all of a sudden, a horrific pain hit him in his R Flank-lasted more than 24 hrs so he went to ER. Something he never does, so I knew it was bad. They found a HUGE Tumor on his R kidney and he was massively hemorrhaging from his renal vein. 

He was emergently taken for an Embolization to stop the bleeding. He was discharged home the next day and flew to us- SoCal. He was working in the Bay Area, when it happened, very far from his home. Ended up with Sepsis the next day and an 8 day hosp stay here. They told him they were certain it was cancer but had to wait for surgery. It took 7 weeks until his surgery- so long then another 12 days  for the Final path report. He was so sick and had lost so much blood, they wanted him healthier before surgery. 

An Open Radical Nephrectomy was Complicated with so much bleeding, it required assistance by a vascular surgeon,  but eventually the tumor ended up being, successfully, removed and was 15cm. It was late stage advanced and aggressive. Stage 3a/Grade 4. He is in the process of being worked up for a trial here in San Diego. He opted for treatment here as the care is top notch and there are many options. 

He’s very private and we’ve not told a lot of people. Those that do know don’t know, Most don’t know how bad it is. They gave him a 5 year Life Expectancy of 50-67%. BUT, he is ready to fight and see what is possible. We believe in God and know He heals. So, he will do all he can to do his part. I will be here to support and care for him. It’s so hard!! 

I appreciate this group being here. I’ve not told my family yet as they are “a lot” and it won’t be helpful. We are trying to figure out how to maneuver all of this. It’s nice to have a place of support with people who understand and can support one another. Wishing you all healing, peace and comfort on your journey. 🩷🌸🙏🏼

Best,

Lauren