Happy Holidays

todd121
todd121 Member Posts: 1,448 Member
in Kidney Cancer #1

I haven't been on in awhile. Busy traveling to visit family and also for work, and just haven't found the time to pop in. Just wanted to say hello and wish all of you improved health and peace in the coming year.

Wish I could say my cancer has been out of my mind. The good news is that there's no evidence of mets still. I've been having some odd symptoms, but my oncologist insists (by email mind you) that it's unlikely my cancer returning or the everolimus I'm taking as part of the EVEREST drug trial. He might be right, but when I have weird, somewhat serious seeming medical issues now, the first thing that pops into my mind (and never really goes away until they leave or proven to be something else) is my RCC.

About a month ago I lost the feeling in the right pinkie and edge of my right hand. It came on rather suddenly about a week before a business trip I had to make to Italy, so I had no chance to go to the doctor. I emailed my oncologist and he said "not his specialty" go see my primary care or urgent care doctor. I was 1 day away from leaving, and doubted they'd figure anything out in that timeframe, so I went on. I was not feeling well during my entire trip. I chalked most of it up to jet lag and irregularity that can come along with not eating well (as well as some sinus issues I've been having) and not having my schedule adjusted. While in Italy I got nervous and went to the ER and they did a CT scan of my brain and found nothing. When I returned I saw an ortho surgeon I'd seen before about my hand and he said it to be a somewhat common nerve problem like carpal tunnel (ulnar neuropathy). Well, after seeing him, I was so dizzy Monday night and Tuesday morning I couldn't drive on the freeway. I was on my way to the family doctor and couldn't get there so went straight to the ER. The doc there did an MRI of my brain and upper spine and found nothing in the brain (thank goodness), and no mets on the spine, but found something near the ulnar nerve that might cause my neuropathy. For the dizziness he said I have unrelated vertigo. He prescribed valium for the vertigo and an oral steriod for the nerve condition.

I'm supposed to see a neurologist about my hand next week. I'm waiting to see him before making a decision about taking the oral steroid.

I continue to feel dizzy and nauseous, and just not feeling well. Then there's the hand. And I continue to think they don't really know what's going on with me.

I'm somewhat pissed at my oncologist. I don't really like his refusal to take charge and help me figure out what's going on with my health. I understand I'm NED, but one of my reasons for doing this study was to get in with an oncologist who would help me figure out quickly if I do get mets to deal with them, and I don't appreciate him passing the buck when I don't feel well. He told me to go to the ER if it's serious. The ER doc knows very little about my type of cancer. The good news there was he did listen to me and included the spine in the MRI when he was only going to do the brain...

The dizziness and nausea is really annoying. I suppose this could be new side effects from the everolimus, but I find it odd it didn't show up for over 10 months. I only have about 8 more weeks left on this study. I'll be glad when I stop taking it so I can rule that out as a cause of health issues.

Appreciate having this place to vent and really great to come to a place where I feel a connection. I'm just sorry we have to have this particular connection.

Peace be with all of you,

Todd

Comments

  • NanoSecond
    NanoSecond Member Posts: 653
    #2
    Thoughts

    Hi Todd,

    I am sorry to hear what you have been dealing with - and especially with unhelpful attitude of your oncologist.

    I would not be quick to dismiss the idea that perhaps all of your issues are simply side effects to Everolimus.

    I also would not be anxious to start on any sort of steroid if you can possible avoid it.  All steroids can raise your blood glucose level and weaken your immune system.  Please investigate if there is a better alternative.

    Despite all this I wish you (and everyone here) a very Happy Holiday!

    Best wishes,

     

    -Neil (NanoSecond)

  • Eims
    Eims Member Posts: 423
    #3
    todd honestly that is like me

    todd honestly that is like me at the minute!!!  i have sinus stuff that i never had before, dizziness and nausea a lot of the time....my doc says its not vertigo and now im thinking is it all in my head??!!  i even went to get my eyes done in case i needed new glasses!!  

     

    eims x

  • dhs1963
    dhs1963 Member Posts: 513
    #4
    The thing to remember is that other things can go wrong

    I tend to attribute everything I feel to the cancer; I have had a met surgically removed, and have been having neuropathy from both my nephrectomy and the wedge resection. 

    Since I had a met removed in the upper lobe of my left lung, when I started feeling periodic pain, I convinced myself it was related to something with the cancer.  I was two weeks out of the scan, so figured I could wait.  I was really stupid, but lucky.  The scans were clean.  The periodic pain had a name:  angina.  The problem was a nearly complete blockage of the LAD aterry -- a widow maker heart attack.  A stent was put in and all is well now.

     

     

     

  • TillieSOK
    TillieSOK Member Posts: 252
    #5
    On the ulnar nerve

    On the ulnar nerve thing...it's called ulnar tunnel and I had to have my ulnar nerve in my left arm relocated. (No more "funny bone") my pinky and half of my ring finger were and still are numb, but at least it didn't spread any further, affecting the rest of my hand.  Talk to your doctor and don't leave until he answers your questions.  Prayers that everything turns out okay.

  • todd121
    todd121 Member Posts: 1,448 Member
    #6
    TillieSOK said:

    On the ulnar nerve

    On the ulnar nerve thing...it's called ulnar tunnel and I had to have my ulnar nerve in my left arm relocated. (No more "funny bone") my pinky and half of my ring finger were and still are numb, but at least it didn't spread any further, affecting the rest of my hand.  Talk to your doctor and don't leave until he answers your questions.  Prayers that everything turns out okay.

    Thanks

    I'm seeing a neurologist tomorrow. I believe they are going to do an EMG test to find out where the nerve is impinged.

    Have not taken the steroid and appreciate the encouragement to not take it. I thought the ER doc was shooting from the hip... He seemed mainly  interested in getting me out of his ER.

    The dizziness has remained, but it's gotten a little better. It's really annoying. Driving on the freeway at speeds above 60 is the worst. I finally figured out that it's mainly the dashed lane marker whizzing by me on both sides that are causing me the most trouble. As I go over 65 mph, the frequency they beat in my visual field makes me feel really dizzy.

    I had done some reading on vertigo. BPPV (the most common cause of vertigo), causes your inner ear to send signals to your brain that your head is moving a certain way that isn't accurate. This causes your eyes to move involuntarily, and that's part of what makes you feel dizzy I guess. I think those dashed lines flying by me also causes my eyes to move involuntarily or somehow the two things are acting together to make me feel worse.

    I've had to stay off the freeways. That's been really difficult! Not being able to drive sucks. It's more than that. I live alone, and getting around has been a big problem. I'm glad I can at least drive short distances.

    Hope you feel better Eims. Dizziness sucks.

    Todd

  • todd121
    todd121 Member Posts: 1,448 Member
    #7
    Eims said:

    todd honestly that is like me

    todd honestly that is like me at the minute!!!  i have sinus stuff that i never had before, dizziness and nausea a lot of the time....my doc says its not vertigo and now im thinking is it all in my head??!!  i even went to get my eyes done in case i needed new glasses!!  

     

    eims x

    All in our heads

    I've thought the same thing! I've been trying to be observant to see when it happens and what triggers it. I also start to have a panic when it sets in sometimes.

    The ER doc was asking me all these questions about what kind of dizziness... It was really pretty interesting how hard it was to describe the dizziness to him. Quite difficult. I'm not sure he ever really got it. Wish I could have handed it over to him to experience for 5 minutes so he would've known what it was.

    One thing I thought eventually that helped, "It doesn't matter whether it's in my head or not. Either way I'm experiencing it and I have to deal with it" At least that way I don't add guilt on top of feeling sick. Lol.

    Hope you feel better.

    To

  • Eims
    Eims Member Posts: 423
    #8
    todd121 said:

    Thanks

    I'm seeing a neurologist tomorrow. I believe they are going to do an EMG test to find out where the nerve is impinged.

    Have not taken the steroid and appreciate the encouragement to not take it. I thought the ER doc was shooting from the hip... He seemed mainly  interested in getting me out of his ER.

    The dizziness has remained, but it's gotten a little better. It's really annoying. Driving on the freeway at speeds above 60 is the worst. I finally figured out that it's mainly the dashed lane marker whizzing by me on both sides that are causing me the most trouble. As I go over 65 mph, the frequency they beat in my visual field makes me feel really dizzy.

    I had done some reading on vertigo. BPPV (the most common cause of vertigo), causes your inner ear to send signals to your brain that your head is moving a certain way that isn't accurate. This causes your eyes to move involuntarily, and that's part of what makes you feel dizzy I guess. I think those dashed lines flying by me also causes my eyes to move involuntarily or somehow the two things are acting together to make me feel worse.

    I've had to stay off the freeways. That's been really difficult! Not being able to drive sucks. It's more than that. I live alone, and getting around has been a big problem. I'm glad I can at least drive short distances.

    Hope you feel better Eims. Dizziness sucks.

    Todd

    Hey Todd, how are you today?

    Hey Todd, how are you today?  Mine just comes and goes but on Christmas morning my blood pressure went so low I couldn't even see!!!   I am just putting it down to subconscious stress!!!

    Eims x

     

  • todd121
    todd121 Member Posts: 1,448 Member
    #9
    Eims said:

    Hey Todd, how are you today?

    Hey Todd, how are you today?  Mine just comes and goes but on Christmas morning my blood pressure went so low I couldn't even see!!!   I am just putting it down to subconscious stress!!!

    Eims x

     

    Doing ok. Thanks.

    I have a nasty sinus thing going on, but I've had these for years and while miserable, I know in a week I'll be fine. I'm actually relieved to be sick in a way that I understand what's going on with my body. Haha.

    Saw the neurologist yesterday. My hand has actually gotten better. Only the tip of the pinkie finger is numb now. He thinks it's something like carpal tunnel syndrome, but it's a different nerve and a different tunnel (the ulnar nerve which passes through guyans tunnel, I'm sure I spelled that wrong). My dizziness subsided on the same day. All doctor's insist the two are unrelated, but they both  happened/overlapped at the same time and cleared up at the same time. The neurologist decided to just wait and watch and do nothing at this point. Told me to be careful how I use my phone, mouse, rest my arm on my elbow (where that nerve passes), etc.

    I never took the drugs the ER doc ordered for either condition, and I'm glad.

    Hope you are taking your blood pressure regularly. Low blood pressure is a pain, but I think if given a choice low is better than high? No? Of course too low is also bad. I think your body does need blood circulating! Why do you have low blood pressure? Did they remove your adrenal gland when they removed your kidney? I think that can cause low blood pressure.

    Hope you're better today!

    Todd

  • Eims
    Eims Member Posts: 423
    #10
    todd121 said:

    Doing ok. Thanks.

    I have a nasty sinus thing going on, but I've had these for years and while miserable, I know in a week I'll be fine. I'm actually relieved to be sick in a way that I understand what's going on with my body. Haha.

    Saw the neurologist yesterday. My hand has actually gotten better. Only the tip of the pinkie finger is numb now. He thinks it's something like carpal tunnel syndrome, but it's a different nerve and a different tunnel (the ulnar nerve which passes through guyans tunnel, I'm sure I spelled that wrong). My dizziness subsided on the same day. All doctor's insist the two are unrelated, but they both  happened/overlapped at the same time and cleared up at the same time. The neurologist decided to just wait and watch and do nothing at this point. Told me to be careful how I use my phone, mouse, rest my arm on my elbow (where that nerve passes), etc.

    I never took the drugs the ER doc ordered for either condition, and I'm glad.

    Hope you are taking your blood pressure regularly. Low blood pressure is a pain, but I think if given a choice low is better than high? No? Of course too low is also bad. I think your body does need blood circulating! Why do you have low blood pressure? Did they remove your adrenal gland when they removed your kidney? I think that can cause low blood pressure.

    Hope you're better today!

    Todd

    Awww that's great Todd,

    Awww that's great Todd, delighted you feel better.  My blood pressure was always on the low side even before the radical!!!  Eims

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