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Feeling frustrated

Eskimo lily's picture
Eskimo lily
Posts: 43
Joined: Aug 2013

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

angec's picture
angec
Posts: 622
Joined: Mar 2012

Virginia, it would be good to follow mom's bp with a gp/internist.  That is who we usually deal with when working with mom's pressure. The Onc usually only wants to deal with cancer and not really the side affects of the medicine.  When we went to our local Onc all he did was confer with mom's gp, which is ok with us because they worked together.  But if you found a good one try to call and make an appt. If you have already seen that one before maybe they can and will take a call from you. I wouldn't hesitate at all to do so especially if you feel comfortable with that one. Once you establish a regular relationship with them they usually will take calls and alter meds over the phone.  With mom it was ALOT of trial and error getting the pressure controlled. We constantly switched meds, combined meds and then took them three times a day.  Finally, in the end, we had to go down to 200 mgs. 600 mgs may turn out to be too much for her.  Keep your eye on that and it can always be an option that you discuss with her Onc. It will work out and once you have the situation controlled it will be smooth sailing.

On the lighter side of things, I am shocked to learn that at 51 I am already considered "OLD".. what a surprising reaction to having back pain.  Does she realize your mom is only 50?  Stick to your guns and get the scan, maybe someone else here can answer whether or not an MRI would show if she had any mets on her spine or back area.  I know there is new data that suggest MRI is going to be good to do now with cancer instead of scans. I read it recently about someone being in a trial for that at Sloans and I remember Dr. Motzer asking my mom if she wanted to be in that trial.

You are doing such a wonderful job as your mom's caretaker. I am sorry you have to deal with this at such a young age, but you are remarkable!  Mom is so fortunate to have you!  xxoo  Please keep us posted. 

Eskimo lily's picture
Eskimo lily
Posts: 43
Joined: Aug 2013

Thank you ange and srbelle.

Ange, I was also shocked when she referred to my mom as 50 being old!

good news is, i talked them into ordering a bone scan, so we are scheduled for one this Tuesday. We are keeping a close eye on her blood pressure. 

Srbelle, you're right, I am starting to question my oncs care, im looking into others in the area right now.

Thanks for the advice and listening to my rant!

angec's picture
angec
Posts: 622
Joined: Mar 2012

Virginia, isn't your mom seeing Dr. Motzer at Sloans? Does she have another Onc close by? Can you do a search for a good one in your area on the front part of this page or post and ask who is seeing who on here and SP?  I know you live in CT. There most probably are good docs there too!

 

Eskimo lily's picture
Eskimo lily
Posts: 43
Joined: Aug 2013

Will post now:)

srbelle1
Posts: 123
Joined: Jul 2013

Virginia:

my husband was diagnosed with stage 4 renal cancer in early July; he had spinal surgery and will be having a nephrectomy on 9/20.

bone scans were done immediately after his diagnosis and it is not just the bones but the body that gets scrutiny.

20 years ago when I had breast cancer, a bone scan was done before any surgery to see the metastasis extent, if any, before the surgery.

your mon's doctor is obviously not up to date on routine cancer treatment and a second opinion is something to consider.

as for pain, my husband's main symptom leading to this diagnosis was left flank pain diagnosed carelessly as eararthritis 

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