Back to Unclassified status

1235

Comments

  • I am alive
    I am alive Member Posts: 315
    NewDay said:

    OK OK OK OK
    Tex,
    This is obviously a hot button with you and I bet I don't trip over it again. I do understand your position.

    Michelle,

    I was very fortunate that my tumor, though large, was confined to the kidney and my scans have looked good. My tumor, like your son's, was deemed "unclassified", so I had it sent to MD Anderson for a second opinion. They classified it as a very rare type called translocation Xp11.2. You might want to get a second opinion as well. Maybe the pathologist just didn't have expertise at recognizing the rarer types.

    While I am fortunate that I'm not battling cancer right now, I am battling an as yet undiagnosed weight loss problem that may become as much of a threat as the cancer, so I have that to distract me from the cancer roller coaster. I feel optimistic that your son being young and in otherwise good health gives him a strong chance to beat this thing. I'm sure that when you are with him you do your best not to let your worry and fear show, but know that you can come here any time and share your feelings as you deal with all of this.

    Kathy

    Checking in
    Michele,
    What an ordeal at the hospital! I hope Robbie is feeling better. PLease keep us posted on his progress.. Hopefully it won't be too much longer before they get his cough and fevers under control. Hang tough, Mom! And vent here any time.

    KAthy,
    Congrats on being NED!!! Fantastic place to be!!! Sorry you've got another mystery ailment going on. We live in hope, though, right? Here's hoping the mystery is solved soon and ends up being not very serious.

    Tex,
    You'll be happy to know that I'll be pulling up a chromophobe thread later this week to post my second clinical trial CT results. (ohhhhhhhh I don't want to think about it!!!!! Don't want to think about it!!!!) Til then, crawling Into my little zen cubbyhole ........
  • Texas_wedge
    Texas_wedge Member Posts: 2,798

    Checking in
    Michele,
    What an ordeal at the hospital! I hope Robbie is feeling better. PLease keep us posted on his progress.. Hopefully it won't be too much longer before they get his cough and fevers under control. Hang tough, Mom! And vent here any time.

    KAthy,
    Congrats on being NED!!! Fantastic place to be!!! Sorry you've got another mystery ailment going on. We live in hope, though, right? Here's hoping the mystery is solved soon and ends up being not very serious.

    Tex,
    You'll be happy to know that I'll be pulling up a chromophobe thread later this week to post my second clinical trial CT results. (ohhhhhhhh I don't want to think about it!!!!! Don't want to think about it!!!!) Til then, crawling Into my little zen cubbyhole ........

    Checking
    Michele,
    aren't you glad you joined KIDNEY-ONC as well as the CSN? The latest message from Robin was, I felt, inspiring, even by her exceptional standards. Also, the note-comparing with myboys2 can only be productive and reciprocally supportive, at least I hope so.

    Your hospital story has helped me to appreciate, even more, how lucky I am to have an endlessly caring, compassionate and diligent medical team, here in N.E. Scotland. The way you were treated is absolutely appalling. I'm trying to be charitable by assuming that sheer numbers and work pressure at that hospital account in part for the conduct you reported. If that's any part of it, they need to shake up the whole organisation because no-one should ever be 'treated' like that.

    Despite the traumatic introduction you've had to this ordeal, you're learning very fast and, even though you're feeling all adrift, you have a good plan in place. I'm sure it's right that Motzer will not be put out if you seek further opinions from, e.g. NCI and/or Jan Dutcher.

    Kathy,
    I trust you appreciate that I wasn't upbraiding you - you just handed me the cue for ventin some more about how this splendid forum could be made to work even more effectively.

    Have you been able to get any help from a dietician, even though the cause of your weight loss remains a mystery?

    Peg,
    I'm looking forward to hearing about good results from your upcoming scan soon and presume you'll also update on the ACOR chRCC forum? The info will doubtless be of interst to everyone concerned with the trial, and i know quite a few will be cheered when they hear of your results. I'll be contributing too, quite soon. I have my first follow-up meeting with my oncologist on Friday, after starting on Votrient and will have another CT with contrast soon, which will surely tell a story. Don't pull up my Sarcomatoid Chromophobe thread, since, happily, you don't have sarcomatous change, do you? I'm still trying to find anyone wh'os still alive with sChRCC so plese let me know if you come across anyone. Best of luck with the results.
  • angec
    angec Member Posts: 924 Member

    Checking
    Michele,
    aren't you glad you joined KIDNEY-ONC as well as the CSN? The latest message from Robin was, I felt, inspiring, even by her exceptional standards. Also, the note-comparing with myboys2 can only be productive and reciprocally supportive, at least I hope so.

    Your hospital story has helped me to appreciate, even more, how lucky I am to have an endlessly caring, compassionate and diligent medical team, here in N.E. Scotland. The way you were treated is absolutely appalling. I'm trying to be charitable by assuming that sheer numbers and work pressure at that hospital account in part for the conduct you reported. If that's any part of it, they need to shake up the whole organisation because no-one should ever be 'treated' like that.

    Despite the traumatic introduction you've had to this ordeal, you're learning very fast and, even though you're feeling all adrift, you have a good plan in place. I'm sure it's right that Motzer will not be put out if you seek further opinions from, e.g. NCI and/or Jan Dutcher.

    Kathy,
    I trust you appreciate that I wasn't upbraiding you - you just handed me the cue for ventin some more about how this splendid forum could be made to work even more effectively.

    Have you been able to get any help from a dietician, even though the cause of your weight loss remains a mystery?

    Peg,
    I'm looking forward to hearing about good results from your upcoming scan soon and presume you'll also update on the ACOR chRCC forum? The info will doubtless be of interst to everyone concerned with the trial, and i know quite a few will be cheered when they hear of your results. I'll be contributing too, quite soon. I have my first follow-up meeting with my oncologist on Friday, after starting on Votrient and will have another CT with contrast soon, which will surely tell a story. Don't pull up my Sarcomatoid Chromophobe thread, since, happily, you don't have sarcomatous change, do you? I'm still trying to find anyone wh'os still alive with sChRCC so plese let me know if you come across anyone. Best of luck with the results.

    Speaking of Appalling... and
    Speaking of Appalling... and treatment. I just spoke to mom's oncologist on the phone and asked about Votrient.. his response: "What's that?" Oh my nervs! Are oncologist using the name Pan.. something or other or shouldn't they know Votrient? I am desperate to get mom in to see Motzer, she thinks the hour drive is too much for her from Brooklyn to NY and is worried that it is too far to get to see him each time.
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    angec said:

    Speaking of Appalling... and
    Speaking of Appalling... and treatment. I just spoke to mom's oncologist on the phone and asked about Votrient.. his response: "What's that?" Oh my nervs! Are oncologist using the name Pan.. something or other or shouldn't they know Votrient? I am desperate to get mom in to see Motzer, she thinks the hour drive is too much for her from Brooklyn to NY and is worried that it is too far to get to see him each time.

    Votrient
    Ange, even though it's a relatively new drug, you'd think any oncologist who knows of pazopanib would know it's marketed under the name Votrient. Maybe he misheard you or perhaps he's a specialist in other areas and isn't very familiar with the world of RCC?
  • michy067
    michy067 Member Posts: 8

    Votrient
    Ange, even though it's a relatively new drug, you'd think any oncologist who knows of pazopanib would know it's marketed under the name Votrient. Maybe he misheard you or perhaps he's a specialist in other areas and isn't very familiar with the world of RCC?

    IL-2 and sending to other pathologists
    I called Dr. Motzer's office and asked why Robbie was not considered for IL-2 and I was told they do not do that there. We can discuss when we come in on the 27th. I would have to go somewhere else if I wanted that. I also asked to have his slides sent to Dr. Tannir(MD Andersen) and Dr. Merino(NCI). They seemed annoyed with me. I emailed Dr. Tannir and he responded right away and said If I am with Dr. Motzer I really do not need to send my son's slides anywhere else. He said stick with Dr. Motzer. He said to have them check for translocation RCC w/TFE immunastain. I do think they already checked my son for all these rare and genetic types and so far nothing. I have a feeling that unclassified non-clear RCC is all we are going to get no matter who else I send these slides to.
  • I am alive
    I am alive Member Posts: 315
    angec said:

    Speaking of Appalling... and
    Speaking of Appalling... and treatment. I just spoke to mom's oncologist on the phone and asked about Votrient.. his response: "What's that?" Oh my nervs! Are oncologist using the name Pan.. something or other or shouldn't they know Votrient? I am desperate to get mom in to see Motzer, she thinks the hour drive is too much for her from Brooklyn to NY and is worried that it is too far to get to see him each time.

    Drive the hour
    Ange,
    Time for the child to parent the parent! If you can get in to see Dr. Motzer why in the world wouldn't you? Because of an hour's drive? This is your mom's LIFE we're talking about!! I know how stubborn parents can be but put your foot down. You are currently with an onc who hasn't heard of Votrient. Run, do not walk, out the door!
  • I am alive
    I am alive Member Posts: 315

    Drive the hour
    Ange,
    Time for the child to parent the parent! If you can get in to see Dr. Motzer why in the world wouldn't you? Because of an hour's drive? This is your mom's LIFE we're talking about!! I know how stubborn parents can be but put your foot down. You are currently with an onc who hasn't heard of Votrient. Run, do not walk, out the door!

    A second take
    Ange,
    My above post is probably not helpful. Let me add this: If your mom is not in a trial she would probably not be going into NY to see the doc that often. I could be wrong but I think Sloan has a satellite facility in Brooklyn where you might be able to get scans and such done. So the whole NY hassle can be contained and managed. You could also ask for a local onc recommendation, someone in Brooklyn who works with the Sloan team. Whatever you end up doing, I would find another oncologist. He/she may have served your mom well up to this point, but now her needs may have outgrown his expertise. Good luck!
  • angec
    angec Member Posts: 924 Member

    A second take
    Ange,
    My above post is probably not helpful. Let me add this: If your mom is not in a trial she would probably not be going into NY to see the doc that often. I could be wrong but I think Sloan has a satellite facility in Brooklyn where you might be able to get scans and such done. So the whole NY hassle can be contained and managed. You could also ask for a local onc recommendation, someone in Brooklyn who works with the Sloan team. Whatever you end up doing, I would find another oncologist. He/she may have served your mom well up to this point, but now her needs may have outgrown his expertise. Good luck!

    I am going to call sloans
    I am going to call sloans back tomorrow but I was pretty sure they told me there is a Brooklyn office only for getting transfusions for like chemo or MDX. I will also find out if they recommend anyone in Brooklyn. We see her oncologist on Wednesday and if he doesn't know Votrient then mom will have to be dragged kicking and screaming. I think mom is deathly afraid of the hospital because a relative died there and there was a bad experience with them but over ten years ago. But I am with you , we need to go there, do you really think they would tell us who they work with in Brooklyn? That would be great. The doctor she has is very offensive when I ask questions too and that annoys me to no end. Last time I asked about trials and MDX he nearly jumped down my throat, not looking forward to Wednesday. He has been upset with me because I had asked him in the beginning if the surgeon took out the nodes that showed on the first cat scan. He knew he didn't but never told me for sure. Then on third visit after gopher first post surgery scan says he knew the Doctor didnt take the out. I just wanted to faint, I was so angry but had to contain myself. Because my question is, why didn't he take them out? I almost feel like he and the surgeon were in cohoots. Let's see how it goes on Wednesdsay but tomorrow I call sloans back. Thanks for the advice.

    TW, I am hoping he didn't hear me correctly on the phone too. We shall see.
  • pixied
    pixied Member Posts: 1
    angec said:

    I am going to call sloans
    I am going to call sloans back tomorrow but I was pretty sure they told me there is a Brooklyn office only for getting transfusions for like chemo or MDX. I will also find out if they recommend anyone in Brooklyn. We see her oncologist on Wednesday and if he doesn't know Votrient then mom will have to be dragged kicking and screaming. I think mom is deathly afraid of the hospital because a relative died there and there was a bad experience with them but over ten years ago. But I am with you , we need to go there, do you really think they would tell us who they work with in Brooklyn? That would be great. The doctor she has is very offensive when I ask questions too and that annoys me to no end. Last time I asked about trials and MDX he nearly jumped down my throat, not looking forward to Wednesday. He has been upset with me because I had asked him in the beginning if the surgeon took out the nodes that showed on the first cat scan. He knew he didn't but never told me for sure. Then on third visit after gopher first post surgery scan says he knew the Doctor didnt take the out. I just wanted to faint, I was so angry but had to contain myself. Because my question is, why didn't he take them out? I almost feel like he and the surgeon were in cohoots. Let's see how it goes on Wednesdsay but tomorrow I call sloans back. Thanks for the advice.

    TW, I am hoping he didn't hear me correctly on the phone too. We shall see.

    sadly another diagnosed
    Hello to all,

    Have just finished reading all of your posts. My brother who has been battling kidney cancer for the last several months, in fact since early July, was only just told that it is an unclassified rare form. We are in Canada close to Toronto in a city called Hamilton. I truly believe the system dropped the ball on this one. His cancer is so progressed with 1 kidney removed and cancer now present in his lungs, liver, bones and other places. He just started on Sutent last night. He has lost so much weight. I know so little about this and am looking for a little informed information. So on that note, can anyone tell me much about Sutent and its effectiveness?

    Annalina
  • NewDay
    NewDay Member Posts: 272
    pixied said:

    sadly another diagnosed
    Hello to all,

    Have just finished reading all of your posts. My brother who has been battling kidney cancer for the last several months, in fact since early July, was only just told that it is an unclassified rare form. We are in Canada close to Toronto in a city called Hamilton. I truly believe the system dropped the ball on this one. His cancer is so progressed with 1 kidney removed and cancer now present in his lungs, liver, bones and other places. He just started on Sutent last night. He has lost so much weight. I know so little about this and am looking for a little informed information. So on that note, can anyone tell me much about Sutent and its effectiveness?

    Annalina

    Welcome
    Hi Annalina,

    I'm so glad you found your way here, but hate that you had reason to look for us. Welcome to the board and welcome to the "unclassified" thread. You will find invaluable support here on the board. When my pathology report came back with "renal cell carcinoma: unclassified", I was urged by others here and on another site to get a second opinion on the pathology from an institution that has experts in kidney cancer. I had my slides sent to MD Anderson in Houston where they identified it to be a very rare type, but at least it is now classified. It is important to get it classified if at all possible because the type can make a difference in deciding which treatment would be best. (Others correct me if I am wrong). However, that can take time and right now I think the priority would be to get him started on something and not waste time waiting for the results.

    I have also lost a lot of weight, probably not related to my cancer, but I wanted to suggest as others did to me that you find a nutritionist. Since I am able to eat so little, my goal is for them to identify what foods provide the most calories and nutrition that I can tolerate and that are also low in volume and easily digestible; that would give me the most "bang for my buck" if you will. That is probably a lot to ask for and have not seen my nutritionist yet, but maybe one could help your brother.

    I will have to leave the Sutent advice to others here. I expect others here will highly recommend that you join the Kidney-ONC (ACOR.org) site because they have members with a great deal of knowledge and experience in battling this disease. If you will scroll down the list of threads here, not too far down, there is one started by Texas_Wedge that explains how to join it. The title starts with "ACOR - how to join lists".

    I pray for your brother and also for you as you help him through his journey.

    Kathy
  • NewDay
    NewDay Member Posts: 272
    NewDay said:

    Welcome
    Hi Annalina,

    I'm so glad you found your way here, but hate that you had reason to look for us. Welcome to the board and welcome to the "unclassified" thread. You will find invaluable support here on the board. When my pathology report came back with "renal cell carcinoma: unclassified", I was urged by others here and on another site to get a second opinion on the pathology from an institution that has experts in kidney cancer. I had my slides sent to MD Anderson in Houston where they identified it to be a very rare type, but at least it is now classified. It is important to get it classified if at all possible because the type can make a difference in deciding which treatment would be best. (Others correct me if I am wrong). However, that can take time and right now I think the priority would be to get him started on something and not waste time waiting for the results.

    I have also lost a lot of weight, probably not related to my cancer, but I wanted to suggest as others did to me that you find a nutritionist. Since I am able to eat so little, my goal is for them to identify what foods provide the most calories and nutrition that I can tolerate and that are also low in volume and easily digestible; that would give me the most "bang for my buck" if you will. That is probably a lot to ask for and have not seen my nutritionist yet, but maybe one could help your brother.

    I will have to leave the Sutent advice to others here. I expect others here will highly recommend that you join the Kidney-ONC (ACOR.org) site because they have members with a great deal of knowledge and experience in battling this disease. If you will scroll down the list of threads here, not too far down, there is one started by Texas_Wedge that explains how to join it. The title starts with "ACOR - how to join lists".

    I pray for your brother and also for you as you help him through his journey.

    Kathy

    UPDATE FROM NIH TRIP

    Hi guys,

    I'm a little late updating you on my trip to NIH in February because a lot of non-cancer things have been going on.

    Most importantly, my scans were good!  Next ones will be in August.

    You will remember that my first pathology report stated my histology was "unclassified".  I had my slides sent to MD Anderson who classified it as translocation xp11.2.  NIH has determine it is NOT translocation.  It only states it was an unusual non-clear cell tumor so I'm back to unclassified.  I'm actually not unhappy with MD Anderson's result because it is only because of their report that NIH was even interested in seeing me.  As a result I at least feel I and my cells have been seen by experts.  I knew from googling that there are at least two ways to test for translocation, with one being more sophisticated and reliable.  I know that NIH used that one (a FISH study).  It may be that MD Anderson used the other, less reliable, method.

    On the genetics testing:  They had already ruled out some familial types because I did not fit the profile, but tested me for some others.  All of them came back negative for those types.  Even though my nephew's tumor was clear cell, they still believe there is still some genetic connection, but do not know what that connection is and may never know.  As long as I stay NED, it doesn't really matter, but if that were to  ever change it means they wouldn't know what treatment would be best and means I would be excluded from most trials.  I'll just hope I never have to go down that road.

    One of my sisters accompanied me on the trip and we added on a couple of days for sight seeing and spent most of it at the Smithsonian.  Unfortunately February is not the best time to visit DC and I stepped on a patch of ice and took a nasty fall on my right side, exactly where my nephrectomy was.  NIH did xrays and I didn't break anything, but is was really painful.

    I'm not on the board regularly lately because I recently moved and my mother also ended up in the hospital and is now in a nursing home, but is improving.  I have had a few spells of completely passing out and that is being investigated.  The doctors said it could be due to my anemia, but didn't think I was anemic enough to cause syncope.   It has just all been time consuming.  I have not had a chance to catch up on the last few weeks' posts so I hope everyone is doing well.  I think of you all often.  I probably won't have much presence here for a couple of more weeks.

    Be well,

    Kathy

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

    UPDATE FROM NIH TRIP

    Hi guys,

    I'm a little late updating you on my trip to NIH in February because a lot of non-cancer things have been going on.

    Most importantly, my scans were good!  Next ones will be in August.

    You will remember that my first pathology report stated my histology was "unclassified".  I had my slides sent to MD Anderson who classified it as translocation xp11.2.  NIH has determine it is NOT translocation.  It only states it was an unusual non-clear cell tumor so I'm back to unclassified.  I'm actually not unhappy with MD Anderson's result because it is only because of their report that NIH was even interested in seeing me.  As a result I at least feel I and my cells have been seen by experts.  I knew from googling that there are at least two ways to test for translocation, with one being more sophisticated and reliable.  I know that NIH used that one (a FISH study).  It may be that MD Anderson used the other, less reliable, method.

    On the genetics testing:  They had already ruled out some familial types because I did not fit the profile, but tested me for some others.  All of them came back negative for those types.  Even though my nephew's tumor was clear cell, they still believe there is still some genetic connection, but do not know what that connection is and may never know.  As long as I stay NED, it doesn't really matter, but if that were to  ever change it means they wouldn't know what treatment would be best and means I would be excluded from most trials.  I'll just hope I never have to go down that road.

    One of my sisters accompanied me on the trip and we added on a couple of days for sight seeing and spent most of it at the Smithsonian.  Unfortunately February is not the best time to visit DC and I stepped on a patch of ice and took a nasty fall on my right side, exactly where my nephrectomy was.  NIH did xrays and I didn't break anything, but is was really painful.

    I'm not on the board regularly lately because I recently moved and my mother also ended up in the hospital and is now in a nursing home, but is improving.  I have had a few spells of completely passing out and that is being investigated.  The doctors said it could be due to my anemia, but didn't think I was anemic enough to cause syncope.   It has just all been time consuming.  I have not had a chance to catch up on the last few weeks' posts so I hope everyone is doing well.  I think of you all often.  I probably won't have much presence here for a couple of more weeks.

    Be well,

    Kathy

    Nice to hear from

    you Kathy.  You used to be so scared and now deal with it so well. Im happy most things are good for you.  The rest will take care of themselves. Congrats on the scans. Keep them up. There is so much we will never know. Especially for you guys with the non clear cell tumors. I don't want to think that hard anymore. I am trusting of my Dr. and I agree on my treatment plan. So it is easier for me. Just keep doing what you are doing.

    Fox

  • AprilandChuck
    AprilandChuck Member Posts: 110
    alice124 said:

    Second opinions
    Kathy,

    I have less medical background than most on this board, but my gut reaction in reading your doctor's/nurse's reaction to a second opinion and your initial health issue (weight loss) tells me you should get a second opinion. John's doctor made it perfectly clear that if John wanted a second opinion, he would welcome it. Even our insurance company encouraged it. They made it clear that additional opinions were not limited to two. So you may want to call your insurance company.

    Keep us posted and take care.

    she's right

    Our Oncologist told us to get  a second opinion if we needed or wanted  one and they would help.. if need be..our urologist brought the oncologist in even prior to surgery..even though he himself is a urological oncologist..and 6 month scans seem far off to me I am not a Dr but my husband was going to be scanned every 3 month for year prior to them finding rhabdoid features on the edges of his primary tumor. Which had them move him to 2 month scans to be more vigilant....comfortvwith your doctors is very important a second opinion may make yoy more comfortable or change..its your health you can not be to careful...best of luck and well wishes huggss

  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    NewDay said:

    UPDATE FROM NIH TRIP

    Hi guys,

    I'm a little late updating you on my trip to NIH in February because a lot of non-cancer things have been going on.

    Most importantly, my scans were good!  Next ones will be in August.

    You will remember that my first pathology report stated my histology was "unclassified".  I had my slides sent to MD Anderson who classified it as translocation xp11.2.  NIH has determine it is NOT translocation.  It only states it was an unusual non-clear cell tumor so I'm back to unclassified.  I'm actually not unhappy with MD Anderson's result because it is only because of their report that NIH was even interested in seeing me.  As a result I at least feel I and my cells have been seen by experts.  I knew from googling that there are at least two ways to test for translocation, with one being more sophisticated and reliable.  I know that NIH used that one (a FISH study).  It may be that MD Anderson used the other, less reliable, method.

    On the genetics testing:  They had already ruled out some familial types because I did not fit the profile, but tested me for some others.  All of them came back negative for those types.  Even though my nephew's tumor was clear cell, they still believe there is still some genetic connection, but do not know what that connection is and may never know.  As long as I stay NED, it doesn't really matter, but if that were to  ever change it means they wouldn't know what treatment would be best and means I would be excluded from most trials.  I'll just hope I never have to go down that road.

    One of my sisters accompanied me on the trip and we added on a couple of days for sight seeing and spent most of it at the Smithsonian.  Unfortunately February is not the best time to visit DC and I stepped on a patch of ice and took a nasty fall on my right side, exactly where my nephrectomy was.  NIH did xrays and I didn't break anything, but is was really painful.

    I'm not on the board regularly lately because I recently moved and my mother also ended up in the hospital and is now in a nursing home, but is improving.  I have had a few spells of completely passing out and that is being investigated.  The doctors said it could be due to my anemia, but didn't think I was anemic enough to cause syncope.   It has just all been time consuming.  I have not had a chance to catch up on the last few weeks' posts so I hope everyone is doing well.  I think of you all often.  I probably won't have much presence here for a couple of more weeks.

    Be well,

    Kathy

    UPDATE FROM NIH TRIP

    Well, that was a highly successful fishing trip to NIH!  Pleasant to have a couple of days jaunt with your Sister but a shame about the fall - ouch!

    That's a very sensible philosophical conclusion about the MDA finding of xp11.2 - the silver lining of getting you into NIH.

    When you're freer, do tell us how your weight loss problem is going, how your eGFR is looking and what the best guess is about the cause of the syncope.  A lot of people here have been reporting their good news and it's nice that yours is now added to that, Kathy.  Take care, and stay NED!

  • alice124
    alice124 Member Posts: 896 Member
    NewDay said:

    UPDATE FROM NIH TRIP

    Hi guys,

    I'm a little late updating you on my trip to NIH in February because a lot of non-cancer things have been going on.

    Most importantly, my scans were good!  Next ones will be in August.

    You will remember that my first pathology report stated my histology was "unclassified".  I had my slides sent to MD Anderson who classified it as translocation xp11.2.  NIH has determine it is NOT translocation.  It only states it was an unusual non-clear cell tumor so I'm back to unclassified.  I'm actually not unhappy with MD Anderson's result because it is only because of their report that NIH was even interested in seeing me.  As a result I at least feel I and my cells have been seen by experts.  I knew from googling that there are at least two ways to test for translocation, with one being more sophisticated and reliable.  I know that NIH used that one (a FISH study).  It may be that MD Anderson used the other, less reliable, method.

    On the genetics testing:  They had already ruled out some familial types because I did not fit the profile, but tested me for some others.  All of them came back negative for those types.  Even though my nephew's tumor was clear cell, they still believe there is still some genetic connection, but do not know what that connection is and may never know.  As long as I stay NED, it doesn't really matter, but if that were to  ever change it means they wouldn't know what treatment would be best and means I would be excluded from most trials.  I'll just hope I never have to go down that road.

    One of my sisters accompanied me on the trip and we added on a couple of days for sight seeing and spent most of it at the Smithsonian.  Unfortunately February is not the best time to visit DC and I stepped on a patch of ice and took a nasty fall on my right side, exactly where my nephrectomy was.  NIH did xrays and I didn't break anything, but is was really painful.

    I'm not on the board regularly lately because I recently moved and my mother also ended up in the hospital and is now in a nursing home, but is improving.  I have had a few spells of completely passing out and that is being investigated.  The doctors said it could be due to my anemia, but didn't think I was anemic enough to cause syncope.   It has just all been time consuming.  I have not had a chance to catch up on the last few weeks' posts so I hope everyone is doing well.  I think of you all often.  I probably won't have much presence here for a couple of more weeks.

    Be well,

    Kathy

    Your update

    Kathy - So good to see you back here and feeling reasonably well.

    Washington in February is usually cold, but particularly this year. Sorry about the nasty fall but glad you were able to spend time at the Smithsonian. So much to see!

    Get back to us when  you can with answers to Tex's questions (weight, etc.) and  about the fainting. That's a concern, but I know you'll stay on top of it. We've missed you. Hope your mom continues to improve.

  • NewDay
    NewDay Member Posts: 272

    she's right

    Our Oncologist told us to get  a second opinion if we needed or wanted  one and they would help.. if need be..our urologist brought the oncologist in even prior to surgery..even though he himself is a urological oncologist..and 6 month scans seem far off to me I am not a Dr but my husband was going to be scanned every 3 month for year prior to them finding rhabdoid features on the edges of his primary tumor. Which had them move him to 2 month scans to be more vigilant....comfortvwith your doctors is very important a second opinion may make yoy more comfortable or change..its your health you can not be to careful...best of luck and well wishes huggss

    Health update

    Hi guys,

    I just thought I would give you an update on my general health situation.  I'm actually gaining weight.  My mysterious abdominal pain problem has greatly decreased.  I still can't eat much, but I'm able to get enough calories to start making up some lost ground.  Now my challenge is that I can  no longer use my weight issue as an excuse to pack in the ice cream and sweets just for calories.  Now that I can eat more, I need to make the "more" also be "more healthy".  I'm also going to try to start exercising now that I feel better.  I still have gastroparesis, but that just means I have to eat frequent small meals.

    I have been thoroughly checked out by a cardiologist and told all is "normal", so my syncope episodes were not anything heart related.  He says his theory is just that I am more sensitive than most people when I get dehydrated.  I told him I had worked hard at drinking more water because of my creatinine and he said that, if I wasn't getting enough salt, the water would just be going through me, so I need more salt, which was what my Nephrologist told me on my last visit.  I had taken his advice and my last lab test showed my creatinine at 1.6 which puts me just inside the range to get contrast with scans.  Hallelujah!  The cardiologist thinks my passing out may also be what is called "vasovagal syncope" which I had actually self diagnosed the first time it happened.  Abdominal problems especially can stimulate the vagus nerve which controls a lot of things and can cause your blood pressure to plummet.  I can't really do anything about it, but I've learned to recognize it coming on.

    I'm still trying to juggle my now really long commute and other things, so I haven't had time to catch up with everyone's status here, but things should settle down in a couple of weeks and I can rejoin the group.  I miss you all.  I was driving home a couple of days ago and six harleys passed by and you can guess who came to mind, so I had to jump in at at least say hello to everybody.

    It just feels soooo good to feel good when you have felt bad for so long.  I thank you all for your encouragement.  I will gladly reciprocate.  You have all made a rough time a little easier.

    Neil, I'm going to look for the guide you sent me.  If you have updated it, I would love to have a new copy.

    I apologize for spending so much time on non-cancer stuff, but I consider you friends and knew you would celebrate the good news with me.

    Everyone take care.

    Kathy

     

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

    Health update

    Hi guys,

    I just thought I would give you an update on my general health situation.  I'm actually gaining weight.  My mysterious abdominal pain problem has greatly decreased.  I still can't eat much, but I'm able to get enough calories to start making up some lost ground.  Now my challenge is that I can  no longer use my weight issue as an excuse to pack in the ice cream and sweets just for calories.  Now that I can eat more, I need to make the "more" also be "more healthy".  I'm also going to try to start exercising now that I feel better.  I still have gastroparesis, but that just means I have to eat frequent small meals.

    I have been thoroughly checked out by a cardiologist and told all is "normal", so my syncope episodes were not anything heart related.  He says his theory is just that I am more sensitive than most people when I get dehydrated.  I told him I had worked hard at drinking more water because of my creatinine and he said that, if I wasn't getting enough salt, the water would just be going through me, so I need more salt, which was what my Nephrologist told me on my last visit.  I had taken his advice and my last lab test showed my creatinine at 1.6 which puts me just inside the range to get contrast with scans.  Hallelujah!  The cardiologist thinks my passing out may also be what is called "vasovagal syncope" which I had actually self diagnosed the first time it happened.  Abdominal problems especially can stimulate the vagus nerve which controls a lot of things and can cause your blood pressure to plummet.  I can't really do anything about it, but I've learned to recognize it coming on.

    I'm still trying to juggle my now really long commute and other things, so I haven't had time to catch up with everyone's status here, but things should settle down in a couple of weeks and I can rejoin the group.  I miss you all.  I was driving home a couple of days ago and six harleys passed by and you can guess who came to mind, so I had to jump in at at least say hello to everybody.

    It just feels soooo good to feel good when you have felt bad for so long.  I thank you all for your encouragement.  I will gladly reciprocate.  You have all made a rough time a little easier.

    Neil, I'm going to look for the guide you sent me.  If you have updated it, I would love to have a new copy.

    I apologize for spending so much time on non-cancer stuff, but I consider you friends and knew you would celebrate the good news with me.

    Everyone take care.

    Kathy

     

    Vroom, vroom...

    We all think of you too Kathy. Glad to hear from you and more glad that things are so much closer to normal.  Never gets easy because it never really goes away. If not in the body then it is still in the mind. Smile and keep living forward. What are you going to do for yourself that is special? Celebrate a little! Fox.

  • NanoSecond
    NanoSecond Member Posts: 653
    NewDay said:

    Health update

    Hi guys,

    I just thought I would give you an update on my general health situation.  I'm actually gaining weight.  My mysterious abdominal pain problem has greatly decreased.  I still can't eat much, but I'm able to get enough calories to start making up some lost ground.  Now my challenge is that I can  no longer use my weight issue as an excuse to pack in the ice cream and sweets just for calories.  Now that I can eat more, I need to make the "more" also be "more healthy".  I'm also going to try to start exercising now that I feel better.  I still have gastroparesis, but that just means I have to eat frequent small meals.

    I have been thoroughly checked out by a cardiologist and told all is "normal", so my syncope episodes were not anything heart related.  He says his theory is just that I am more sensitive than most people when I get dehydrated.  I told him I had worked hard at drinking more water because of my creatinine and he said that, if I wasn't getting enough salt, the water would just be going through me, so I need more salt, which was what my Nephrologist told me on my last visit.  I had taken his advice and my last lab test showed my creatinine at 1.6 which puts me just inside the range to get contrast with scans.  Hallelujah!  The cardiologist thinks my passing out may also be what is called "vasovagal syncope" which I had actually self diagnosed the first time it happened.  Abdominal problems especially can stimulate the vagus nerve which controls a lot of things and can cause your blood pressure to plummet.  I can't really do anything about it, but I've learned to recognize it coming on.

    I'm still trying to juggle my now really long commute and other things, so I haven't had time to catch up with everyone's status here, but things should settle down in a couple of weeks and I can rejoin the group.  I miss you all.  I was driving home a couple of days ago and six harleys passed by and you can guess who came to mind, so I had to jump in at at least say hello to everybody.

    It just feels soooo good to feel good when you have felt bad for so long.  I thank you all for your encouragement.  I will gladly reciprocate.  You have all made a rough time a little easier.

    Neil, I'm going to look for the guide you sent me.  If you have updated it, I would love to have a new copy.

    I apologize for spending so much time on non-cancer stuff, but I consider you friends and knew you would celebrate the good news with me.

    Everyone take care.

    Kathy

     

    Updated Guide

    Kathy,

    I am very pleased to hear about the progress you are making.  That is wonderful news.

    And yes, my guide has been updated quite a bit since February.  And you will be the very first to get the newly formatted version - complete with a handy Table of Contents.

    I hope you find it helpful.

    Best wishes,

     

    -N

  • NewDay
    NewDay Member Posts: 272

    Updated Guide

    Kathy,

    I am very pleased to hear about the progress you are making.  That is wonderful news.

    And yes, my guide has been updated quite a bit since February.  And you will be the very first to get the newly formatted version - complete with a handy Table of Contents.

    I hope you find it helpful.

    Best wishes,

     

    -N

    NED 1 year and counting!

    Just sharing the good news that my scans were normal!

  • icemantoo
    icemantoo Member Posts: 3,361 Member
    NewDay said:

    NED 1 year and counting!

    Just sharing the good news that my scans were normal!

    NED

    May the years keep counting. Double didgets are just down the road.

     

    Icemantoo