NED no more :(

NewDay
NewDay Member Posts: 272
in Kidney Cancer #1

Well I just returned from a trip to MD Anderson.  I had been having trouble getting my insurance to approve my 6 month scans, so I went to see an oncologist there that specializes in the rare forms of kidney cancer (mine is unclassified) in order to find out my chances of recurrence and how often I really needed scans.  He told me the chances were 40% over 10 years and, when I asked what kind of treatment would be used if it did return, he said that the FDA approved drugs are  not effective on the rare types.  Well the next day I went back to see him for my scan results, and he broke the bad news.  I now have mets to the lungs.  So much for my 40%.  He says that I do not qualify for any trials.  He is recommending I try Sutent or Votrient.  He said he was leaning toward Votrient because it is better tolerated.  He recommended 2 oncologists closer to home.  I live in Athens, Ga and work in Atlanta.  I was surprised that one of them is in Athens.  The other is at Emory where I had my surgery.  Both are graduates and fellows of MD Anderson but neither specialize in kidney cancer but we don't have any in Georgia.  I have an appointment with the Athens doctor Monday.  We will see what he thinks.  I'm starting to search for posts where people have discussed both drugs to learn what I can about side effects.

I'm concerned about trying to work if the side effects are rough.  I'm hoping they will let me work from home until I see how it goes since my daily commute is 3 to 4 hours a day.  I don't even know if I want to tell people at work.  I know people feel awkward, not knowing what to say.

I haven't fallen to pieces yet.  Maybe it just hasn't sunk in or I'm tougher than I thought.  Right now I'm up for the fight, but I'm letting you all know that I've suffered from cinical depression for many years which is right now under control with medication.  But, don't be surprised if my posts get gloomy on bad days.  Just bare with me.

One more day on the roller coaster.  Have I ever mentioned I always HATED roller coasters.  They scare me.  I once saw an actor on TV who was talking about a period of time she suffered from agoraphobia, afraid to even go out of the house.  After therapy, she learned to say to herself: "Do it afraid."  So, scary or not, I'll do it afraid if I have to.

Kathy

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Comments

  • GSRon
    GSRon Member Posts: 1,303 Member
    #2
    Kathy... Hang in there.. I

    Kathy... Hang in there.. I did a reply on S.P.  but you have options..!  And I know it is scarey..  I have a lot more lung mets... don't know  how many there are so many...

    But it may take some trial and error to see what works for you... YOU can do it..!

    As for trials, I suspect you DO qualify for some... just a matter of what is open in your area.  Stay tuned, more trials should be coming this year...

    Ron

  • DSFrey
    DSFrey Member Posts: 69
    #3
    I know I'm new

    I know I'm new to this board and tend to be a lurker but my thoughts and prayers go out to you in your fight. As someone that has struggled with anxiety for most of my life I have a lot of experience being afraid. If there is one sliver lining in my cancer its that I don't care that I'm afraid anymore and that makes me less anxious, or maybe that's just the prozac kicking in. Oh, I hate roller coasters too. Good luck! 

  • garym
    garym Member Posts: 1,647
    #4
    "Do it afraid"...

    Hi Kathy,

    The more you "Do it afraid" the less afraid you will become. Tearing down a wall of fear one brick at a time is required by every member of this club, you're just going to earn another patch. I think Ron was encouraging you not to take no for an answer, fox refused to to accept it and is approaching the second anniversary of his expiration date. You can do this, you are a survivor, you are a warrior.

    Godspeed,

    Gary

  • donna_lee
    donna_lee Member Posts: 1,045 Member
    #5
    garym said:

    "Do it afraid"...

    Hi Kathy,

    The more you "Do it afraid" the less afraid you will become. Tearing down a wall of fear one brick at a time is required by every member of this club, you're just going to earn another patch. I think Ron was encouraging you not to take no for an answer, fox refused to to accept it and is approaching the second anniversary of his expiration date. You can do this, you are a survivor, you are a warrior.

    Godspeed,

    Gary

    :()....Shucks

    Kathy-

    Waddle, waddle, quack, quack.  Sounds like you are getting your ducks in a row for the next trip of a lifetime.  Good luck as you research all your options and know that we care what is happening to you.  

    Hope you've thawed out on the east side...we've got anywhere from 2-10 inches of snow here in western Oregon.

    Donna

  • Jojo61
    Jojo61 Member Posts: 1,309 Member
    #6
    donna_lee said:

    :()....Shucks

    Kathy-

    Waddle, waddle, quack, quack.  Sounds like you are getting your ducks in a row for the next trip of a lifetime.  Good luck as you research all your options and know that we care what is happening to you.  

    Hope you've thawed out on the east side...we've got anywhere from 2-10 inches of snow here in western Oregon.

    Donna

    No more NED

    Hi Kathy,

    Sad to hear about your new challenges. But you ARE a warrior! You haven't even fallen apart over this news! Sounds like a warrior to me!

    I know you have a lot of things to sort out, but it will get done, and you will be kicking RCC's but yet again!

    Big Hugs

    Jojo

  • foxhd
    foxhd Member Posts: 3,181 Member
    #7
    Jojo61 said:

    No more NED

    Hi Kathy,

    Sad to hear about your new challenges. But you ARE a warrior! You haven't even fallen apart over this news! Sounds like a warrior to me!

    I know you have a lot of things to sort out, but it will get done, and you will be kicking RCC's but yet again!

    Big Hugs

    Jojo

    Sorry to hear

    this Kathy. You've got our Karma coming in from all directions. So don't be afraid. Turn that energy into aggresion. We won't run out of support so don't you back off from digging in your heels. After you see your MD's, and have a plan in place, go at it full blast. You are not alone. We aren't going to let you down. Keep us informed so we can assist with information and with the results that others experienced with the treatment you choose.Remember we care. Fox.

  • NewDay
    NewDay Member Posts: 272
    #8
    foxhd said:

    Sorry to hear

    this Kathy. You've got our Karma coming in from all directions. So don't be afraid. Turn that energy into aggresion. We won't run out of support so don't you back off from digging in your heels. After you see your MD's, and have a plan in place, go at it full blast. You are not alone. We aren't going to let you down. Keep us informed so we can assist with information and with the results that others experienced with the treatment you choose.Remember we care. Fox.

    Thanks

    Thanks for all of the replies.  It is very encouraging.

    I think I can, I think I can, I think I can....

    Kathy

  • foxhd
    foxhd Member Posts: 3,181 Member
    #9
    NewDay said:

    Thanks

    Thanks for all of the replies.  It is very encouraging.

    I think I can, I think I can, I think I can....

    Kathy

    I can do it

    I can do it, I can do it. I can do it.

  • TillieSOK
    TillieSOK Member Posts: 252
    #10
    NewDay said:

    Thanks

    Thanks for all of the replies.  It is very encouraging.

    I think I can, I think I can, I think I can....

    Kathy

    Kathy, I'm 9 mos out from my

    Kathy, you can do whatever it takes.  You are strong!  Probably stronger than most of us!  I'm 9 mos out from my surgery, and they found nodules (all the report said was " numerous pulmonary nodules bilaterally") in both lungs. The largest one is in my left lung and while it is large enough to biopsy, the risks outweigh the benefits, so we watch and wait and scan and wait some more to see if it grows or if any of the others grow.  It is what it is, and I can't do a danged thing about it 'yet'.....so, I have to trust my doctors and do all I can to not worry too much.  I'm just now starting to get used to the roller coaster.   I'm also waiting for the results of my brain MRI that I had this week.  Just another one of those 100 ft drops straight down!  I think I'll  turn loose of the railing and raise my hands up really high and scream through the next drop!  Heck, everyone else will be screaming, too, so they'll never notice one more, right?  In the meantime, barring rain, I'm taking my little red Miata, with the top down, and heading with my sweetie to the seafood festival in Everglades City this weekend!  Listen to some good live music, eat some good seafood, and get a little sun!  Y'all have a good weekend, too.  I might even have a beer if it's really really a cold beer...like almost slushy.

  • DMike
    DMike Member Posts: 259
    #11
    News

    Hi Kathy,

    I saw your post on SP yesterday. I'll never forget when I learned I had lung mets. It hits hard. But there is hope these days. There are options out there.

    I like Fox's mantra: I can do it. I can do it. I can do it! And also the mantra from this article: I can't go on. I'll go on!

    http://www.nytimes.com/2014/01/25/opinion/sunday/how-long-have-i-got-left.html?emc=eta1&_r=1

    You are always kind to others in your replies. I know you'll get a lot of support here.

    David

  • Eliezer2
    Eliezer2 Member Posts: 85
    #12
    DSFrey said:

    I know I'm new

    I know I'm new to this board and tend to be a lurker but my thoughts and prayers go out to you in your fight. As someone that has struggled with anxiety for most of my life I have a lot of experience being afraid. If there is one sliver lining in my cancer its that I don't care that I'm afraid anymore and that makes me less anxious, or maybe that's just the prozac kicking in. Oh, I hate roller coasters too. Good luck! 

    Roller Coaster is par for the course

    Having a lot of lung mets is just a number.  If the lungs are functioning and the Sutent (or whatever) you are taking has them stabilized, forget about them and go party!

  • Jan4you
    Jan4you Member Posts: 1,330 Member
    #13
    A warm Hello Kathy~
    I wonder

    A warm Hello Kathy~

    I wonder how a little time now has affected you in getting this news. I just wanted to add to all the others, that I too am cheering you forward and offering you hope in your heart.

    No matter what you are feeling, know that our emotions are neither right or wrong. So feel whatever you need to feel!

    Others here who have been through or are going through this kind of challenge can offer you more than I.

    But for now, I just wanted to let you know I am here for you as well. We'll walk this journey along with you~

    Warmly, Jan

  • Djinnie
    Djinnie Member Posts: 945 Member
    #14
    NewDay said:

    Thanks

    Thanks for all of the replies.  It is very encouraging.

    I think I can, I think I can, I think I can....

    Kathy

    Keep Strong!

    Hey Kathy, 

    I am sorry to hear your news! If it's any small comfort to you I know how you are feeling, I had similar news recently. Take it slowly you don't have to rush things, give your mind time to absorb the information, don't put yourself under more pressure than you can cope with at any one time! It will help you to calmly study your options!

    Take care:)

    Djinnie x

  • todd121
    todd121 Member Posts: 1,448 Member
    #15
    You Can Do It

    Hi Kathy. Sorry to hear this. You post anything gloomy you want anytime you feel like it. We've got your back. I've had depression off and on for a long time as well. Talking about it helps me. Being alone inside my head is not a pretty place to be, so please post and share.

    I have you in my thoughts and wish you the best as you move forward in your treatment.

    Kick some you-know-what, afraid or not.

    Please keep us up on how you are doing.

    Hugs,

    Todd

  • NewDay
    NewDay Member Posts: 272
    #16
    todd121 said:

    You Can Do It

    Hi Kathy. Sorry to hear this. You post anything gloomy you want anytime you feel like it. We've got your back. I've had depression off and on for a long time as well. Talking about it helps me. Being alone inside my head is not a pretty place to be, so please post and share.

    I have you in my thoughts and wish you the best as you move forward in your treatment.

    Kick some you-know-what, afraid or not.

    Please keep us up on how you are doing.

    Hugs,

    Todd

    Update

    Hi all,

    Thank you so much for posting.  It really makes me not feel so alone, especially since I live alone.

    I met my new oncologist today.  At least he has an aggressive plan.  He will send for my scans from MDA so that they can determine if the size and position of the lung tumors is such that they can biopsy it.  He wants to be sure it is the RCC and not a second cancer occurring or we could be treating the wrong thing.  I have read some posts where people here have had more than one type of cancer.  He is also going to send for my tumor block, if there is any left, and have it sent for genetic testing.  That may help narrow down the type of treatment I should get.  In the mean time, I will start on Votrient.  He thinks I will qualify for some trials.  He pointed out that, because my tumor is so rare, they  have no way right now of knowing what will work.  At least I feel he is doing all that can be done.  He wants me to meet with the nurse that specializes in counseling patients regarding planning for when time starts running out.  It is unpleasant to think about but I think it is important to do and then try to put it aside and get back to the business of living.

    Thanks again for your support.   You are aweome!  I'm still hangin' in there.

    Kathy

  • Jojo61
    Jojo61 Member Posts: 1,309 Member
    #17
    NewDay said:

    Update

    Hi all,

    Thank you so much for posting.  It really makes me not feel so alone, especially since I live alone.

    I met my new oncologist today.  At least he has an aggressive plan.  He will send for my scans from MDA so that they can determine if the size and position of the lung tumors is such that they can biopsy it.  He wants to be sure it is the RCC and not a second cancer occurring or we could be treating the wrong thing.  I have read some posts where people here have had more than one type of cancer.  He is also going to send for my tumor block, if there is any left, and have it sent for genetic testing.  That may help narrow down the type of treatment I should get.  In the mean time, I will start on Votrient.  He thinks I will qualify for some trials.  He pointed out that, because my tumor is so rare, they  have no way right now of knowing what will work.  At least I feel he is doing all that can be done.  He wants me to meet with the nurse that specializes in counseling patients regarding planning for when time starts running out.  It is unpleasant to think about but I think it is important to do and then try to put it aside and get back to the business of living.

    Thanks again for your support.   You are aweome!  I'm still hangin' in there.

    Kathy

    Oncologist

    Hi Kathy,

    I am glad you have an oncolgist with an aggressive plan. And that you feel he is doing all he can for you.

    You sound like you are being very strong and have a great attitude about it all.  We are all here for you!

    Big Hugs,

    Jojo

  • brea588
    brea588 Member Posts: 240
    #18
    NewDay said:

    Update

    Hi all,

    Thank you so much for posting.  It really makes me not feel so alone, especially since I live alone.

    I met my new oncologist today.  At least he has an aggressive plan.  He will send for my scans from MDA so that they can determine if the size and position of the lung tumors is such that they can biopsy it.  He wants to be sure it is the RCC and not a second cancer occurring or we could be treating the wrong thing.  I have read some posts where people here have had more than one type of cancer.  He is also going to send for my tumor block, if there is any left, and have it sent for genetic testing.  That may help narrow down the type of treatment I should get.  In the mean time, I will start on Votrient.  He thinks I will qualify for some trials.  He pointed out that, because my tumor is so rare, they  have no way right now of knowing what will work.  At least I feel he is doing all that can be done.  He wants me to meet with the nurse that specializes in counseling patients regarding planning for when time starts running out.  It is unpleasant to think about but I think it is important to do and then try to put it aside and get back to the business of living.

    Thanks again for your support.   You are aweome!  I'm still hangin' in there.

    Kathy

    my thoughts

    Hi Kathy just want you to know my thoughts and prayes are with you.  It sounds as though you have some good docs taking care of you and that means a lot.

  • MedScanMan
    MedScanMan Member Posts: 107
    #19
    brea588 said:

    my thoughts

    Hi Kathy just want you to know my thoughts and prayes are with you.  It sounds as though you have some good docs taking care of you and that means a lot.

    Too much Time Away

    Lots of old friends on this thread.  Fox, David, and............... Kathy.........................look what you've been going through.  I think I've been away too long.  Michael, Iceman and I know for sure Alice is lurking in the wind somewhere. Brea still praying for everyone.  Hope you guys didn't send me down for the "dirt nap".  I've been here.  Keeping up and handling some family business.  If you'll allow me I'd like to get back to some of this family business.  I've missed you guys.  Cannot tell you how sorry I was when I signed on and got the news about Tex.  Heartbreaking.  I will miss him so. 

    So, how's everybody feeling?  Anybody in the mood for some inside info so you can take my thoughts in to your Dr's office.....spend a ittle time slapping him around like the old days? They hate when you know more than they do.   Make yourself feel good.  We were always good at that.  Anyway, I feel back.  Hey......and that Roller Coaster crap..............I grew up going to sleep with the Cyclone every night. 

    Love to you all

    Jeff

  • Limelife50
    Limelife50 Member Posts: 476
    #20
    NewDay said:

    Update

    Hi all,

    Thank you so much for posting.  It really makes me not feel so alone, especially since I live alone.

    I met my new oncologist today.  At least he has an aggressive plan.  He will send for my scans from MDA so that they can determine if the size and position of the lung tumors is such that they can biopsy it.  He wants to be sure it is the RCC and not a second cancer occurring or we could be treating the wrong thing.  I have read some posts where people here have had more than one type of cancer.  He is also going to send for my tumor block, if there is any left, and have it sent for genetic testing.  That may help narrow down the type of treatment I should get.  In the mean time, I will start on Votrient.  He thinks I will qualify for some trials.  He pointed out that, because my tumor is so rare, they  have no way right now of knowing what will work.  At least I feel he is doing all that can be done.  He wants me to meet with the nurse that specializes in counseling patients regarding planning for when time starts running out.  It is unpleasant to think about but I think it is important to do and then try to put it aside and get back to the business of living.

    Thanks again for your support.   You are aweome!  I'm still hangin' in there.

    Kathy

    Hi Kathy

    Sorry to hear what you are having to deal with,i remember when you first signed on and shared your situation with everyone and that your prognosis at the time was not the greatest one oh and i do hope you are eating more healthy by now.Well as Texas would say keep your chin up and i will be keeping you in my thoughts.Also hope you qaulify for some trials and get some awesome results.

     

  • NewDay
    NewDay Member Posts: 272
    #21
    Limelife50 said:

    Hi Kathy

    Sorry to hear what you are having to deal with,i remember when you first signed on and shared your situation with everyone and that your prognosis at the time was not the greatest one oh and i do hope you are eating more healthy by now.Well as Texas would say keep your chin up and i will be keeping you in my thoughts.Also hope you qaulify for some trials and get some awesome results.

     

    Hey MedScanMan!

    Hey MedScanMan!

    Sooo glad to see you back.  You get worried when someone drops off that things may have taken a turn for the worse.  What a relief!  I do have a question.  Why is it that you can have a two page scan report that mentions densities in the lungs, a calcification in the liver, foci in the uterus and miscellaneous things and then your next scan says absolutely nothing.  It just makes you suspicious that the radiologist was too lazy to do a thorough report which then makes you wonder if there wasn't something there and he missed it.  Just wondered.

    Ron, DSFrey, Eliezer2, Gary, Donna, JoJo, Fox, Tillie, Djinnie, David, Jan, Todd, Brea, Jeff, and Limelife, look at all the people that took the time to encourage me.  Thanks so much to all of you.  It makes such a difference to know there are people who understand and care.

    As far as eating better, I can say that I'm eating more.  I did gain some weight back, but still have gastroparesis so I can't eat much.  I'm afraid I can't claim to be eating better.  That is a new year's resolution that hasn't come ot pass yet.  To make it worse, my new doc says he needs me to put on some weight, I guess because he said I can expect some nausea with the Votrient.  So, now I'm taking in cholcolates and chocolate donuts.  There must be a healthier way to put weight on when you can't each much. I'm sure Neil could offer some advice.

    Thank you all again,

    Kathy

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