Feeling frustrated

Mom has been on Votrient 600mg for a week now. Her blood pressure has been well controlled with amlodipine 10mg daily and metoprolol xl 50 mg. It's been higher now with systolic 150's. Now, I know that might not sound very high, but her BP hs usually perfect, never above 120/70. I called mom's onc to talk to the nurse to let her know because she told us to keep them updated if her blood pressure gets above 150. When I spoke to her, she had a look at her medication list and saw that mom is already on those 2 medications. Then she asked who prescribed them, and I told her one of the cardiologists at mskcc prescribed it when mom was in the hospital for her nephrectomy and had a run of her atrial fibrillation. Then she told me, "okay, well from now on, please refer to your cardiologist in the future about any blood pressure rises and concerns. I will let them know this time and they should be contacting you." But she was the one who told me to contact her about any blood pressure issues!!

I also asked about having a bone scan done because before surgery, my mom had lower thoracic/lumbar back pain and they originally thought it was because of the left kidney tumor but she still has that occasional back pain. I've also read on posts here on CSN that many people have had bone scans done anyway just for the sake of completleness. All the nurse said was, well, it could be arhtritis and old age, a bone scan might not be necessary. I told her we would really like one to be thorough and to have peace of mind. She said, if anything, they could do an MRI. She said if the pain isn't severe, it's usually not indicated to do a bone scan and didn't think it was necessary. I was so mad! Do they only wait for people to be in pain and suffering before they want to help?

She asked if there were any other issues and I mentioned that my mom's pinky toe on her left foot has been painful to touch. It's not warm, she isn't having any fevers, so I highly doubt its an infection.. It hurts when she walks on it, so she's been walking a little funny. I thought it might be due to the Votrient because I've read on CSN that sometimes people have gotten sensitive bottoms of their feet or changes in their skin, so I was thining maybe this was something similar, so I thought I'd mention it to her. She said it is probably cellulitis or that she has been wearing bad shoes and it's definitely not because of the Votrient and we should go see our GP about it. Mom has definitely not been wearing different shoes, there hasnt been any cuts of bruises, she's been at home for a few days now!

Anyway, she said she will run it by the doctor and let me know what they say. Our regular onc isn't in today, it's some other covering one who will probably care less.

Thank you for listening to my rant, but I really just felt like all the conerns I raised today about her BP, the bone scan, and her toe were completely brushed off and to be honest, we feel a bit neglected.

Does any one know if we are able to see an internalist at mskcc as an outpatient to help manage our care? I don't trust my mom's regular GP because I think he RCC could have been caught a lot earlier if she was in someone else's care. But that's a whold different subject you don't want to get me on!! Before my mom's surgery, we saw an internalist who I thought was extremely thorough and listened to everything we had to say, but most importantly, she took every little thing seriously and followed up on it. So, that is why I'm asking if we can see internalists as outpatients...it would be good to go back to that doctor.

 

 

Virginia