Back to Unclassified status

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

Texas_wedge said:

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.

Texas_wedge said:

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?

I am alive said:

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!

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.

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.

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

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

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 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

 

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.