Caregiver to a stage IV Renal Cell Carcinoma Cancer Patient

jshorty29 said:

New Information

Hello dear family (as I am now calling you)!

Thank you,  THANK YOU, for reaching out to me, via messages and this board.  So much has happend and it still seems like we are getting our ducks in a row, but definitely making progress.

As I had mentioned previously,  David is a vet and we were being seen at the VA in Long Beach...where all vets jokingly and with reason say, "this is where all vets come to die." David's oncologist is very green, a resident who couldn't seem to answer our questions.  I'm learning to become a bit of a pitbull with David's doctors.  This is MY husband, the father of MY children and we are now learning how to fight for his health...fight for our family.  David had a PET scan and David's urologist bascially said, the Sutent was a wash...his exact words were, "some things shrunk and others didn't...the tumor on his kidney actually grew."  Therefore, he considers it a "wash."  He also stated that he hadn't received the official reading from the radiologist yet so our oncologist would go over everything with us as soon as she gets the information.  He also said at this time, they would be looking into seeing if removing David's affected kidney would be the next course of action.  He also mentioned, the VA does not do IL-2 and they have to apply for clinical trials, and it is a VERY slow process being that the VA is a government funded hospital.

With all of this being said, I immediately switched our care to UCI and our oncologist is now Dr. Fruhauf, who we feel VERY comfortable with.  Not only did he answer all our questions, but he went over options with us.  He is well known in his field, an educator and it was like speaking to a true Jedi Knight as opposed to a mere padawan (only Star Wars geeks like myself with get this). He reviewed David's medical records from the VA and he is just waiting to review the PET scan.  He talked about IL-2 (which ya'll have been mentioning) and PD-1, which will be approved for Melanoma in June at UCI and as he mentioned, he can find ways to get David approved for whatever trials he can.   Because of David's age and his strength, Dr. Fruhauf feels David will be a good candidate.  We have a meeting with him next week, once he reviews the PET scan and David's medical history, we will come up with a plan of attack. 

I hope we are now on the right course.  David is feeling quite low right now after hearing what the VA urologist mentioned. But, now at least we have someone in our corner who I feel will guide us in the right direction.  I'm asking David to remain hopeful, even when the odds are stacked against us.  I know he is fearful because the thought of leaving our two babies, ages 3 and 22 months scares him more than anything else.  We are definitely trying to find our balance and I know it's so much harder for David.  I've also gently mentioned that he might want to meet other cancer patients /survivors who understand what he is going through, who can help encourage him when he needs it.  I also mentioned this site and I am hoping he joins.  I have received more information, encouragement and understanding than I ever thought possible and this site is helping me to hold on.  I'm hoping Dave will decide to reach out as well.  Also, I'm not sure who is on FB here, but I created a FB page called A Warriors Battle if you would like to check it out and possibly encourage him there.

https://www.facebook.com/davidsfight47

Ok, with all this being said, am I missing anything?  Is there more I can be doing?  Angela, thank you for your words of encouragement and to all of you, thank you.

I will be in touch as we move forward. 

Love & light,

 

Jenny

 

 

Good Morning, Jenny!

I am so glad that you have changed doctors and have found someone who knows about RCC and with whom you feel more comfortable.  I am not usually  one to be critical, but the first urologist knew less than you about his disease!!!  And, yes, being a pit bull is a good thing.  When we were just starting our journey we were having a problem with the mail order drug company that provides the Sutent.  I was still too much of a newbie and too emotional to deal with them, but there was a nurse in the oncol office who got on the phone and got action and got it fast.  We called her 'the pit bull' at the time:)   She said she thinks of each patient as if they were her brother/sister/parent and wants them to receive the same care she would want for her family members.  As a result of what I have learned on this site and smartpatients.com I have become more of an advocate for my husband and am less fearful of speaking up when it is necessary.

Best wishes as you meet again next week and determine what the treatment plan will be.    ~Sharon

Hugs to you and yours, Jen  (((( HUGS )))

Sorry for ALL you and your darling hubby are going through. Glad you are being directed to better care. LISTEN and TRUST that inner voice to lead you both.  I can already tell you are~

I am glad you came here. There are so many who will offer you education, information and hopeful support!! You won't walk this journey alone.

Just wanted to let you know I too am thinking of you all!!

Warmly, Jan

sblairc said:

A plan of action

I'm SO glad to hear that your new doctor has such a pro-active plan in place. I am keeping your husband in my thoughts. I looked at your FB page, what beautiful kids you have. Wishing you strength while moving forward!

with the switch of doctors, reaching out here, encouraging your husband to do so also. Keep us posted and stay strong! You are the kind of "pitbull" I would want on my team!

I will check out your facebook site.

Big hugs and smiles,

Jojo