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NewDay's picture
NewDay
Posts: 175
Joined: May 2012

Got a copy of my pathology report Size: 9cm x 8cm x 4cm Stage: pT2a Grade: IV Type: Renal cell carcinoma, unclassified. ("does not have the typical histopathologic features either of a clear cell, papillary or chromophobe subtype, nor are there sarcomatoid areas".) Necrosis over 30 - 40% of tumor. Possibly invades the renal sinus fat ------ I would be interested in anything anybody knows about "unclassified" RCC. Also, I asked the doc why he didn't remove any lymph nodes, but I'm thinking I must be remembering the answer wrong because it doesn't make sense to me, but it was the day after surgery and I was still pretty doped up. I thought he said he didn't see any. Does that make any sense? Thanks for any help --Kathy

NewDay's picture
NewDay
Posts: 175
Joined: May 2012

Thank you for the input.

The contrast issue is all because of a 1.8 creatinine. As far as my general health, I look fine and am able to work which, I guess, is why nobody but my family and I seem to be concerned. I have now lost 65 pounds. It is VERY hard to maintain because of early satiety and pain upon eating. Last week's labs came back with a lot of things out of normal range. Onc's nurse says they aren't worried because they haven't changed much since last time which is true but they are lower/ higher than they were. I guess the digestion problems are kind of off topic but I'm concerned, if I had to start treatment, my immune system is starting out compromised and, if treatment exacerbates my digestion problem, I can't afford to lose much weight. I guess it is all much ado about nothing since I was supposedly cured by surgery. If it just weren't for my cotton pickin creatinine! (bet the UK folks haven't heard that term before). Well, I'm getting long winded but at least I got to vent to somebody who will listen since the docs won't.

And I will ask about a 1/2 dose of contrast. I already do the oral but I thought it only lights up the digestive tract which we all know is just fine :).

Labs were: low WBC, RBC. HGB, HCT, MPV, and LYM. High MON% and, of course, creatinine causing low eGFR of 31.

Kathy

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Your eGFR does seem to be staying quite a bit lower than one would like. From the lovely pics of you and Checkers I'm amazed that you could have lost 65 lbs, even including putting Checkers down.

[Vet: "I'm afraid I'm going to have to put your dog down!"
Owner: "OH no!! I didn't realise he was so ill - but why do you have to put him down?"
Vet: "Because he's too heavy for me to hold him like this any longer."]

I think you're right to be concerned about maybe being too fragile for any rough treatment, should any be needed. Are you getting help from a qualified nutritionist?

There are a few observations about contrast in this useful summary of aspects of metastatic RCC
http://old.ctisus.com/multidetector/syllabus/renal_cell_carcinoma2.html

Limelife50's picture
Limelife50
Posts: 411
Joined: Nov 2011

Hey Texas just to let you know when my creatinine was 1.8 the technician would not even touch me even with a half dose of contrast even with hydration,Kathy i am a little confused why your report came back with a GFR in the thirties when mine was in the upper forties also Kathy you really need to address your weight loss issue maybe by seeking out a health professional who can help you formulate a diet that can help you regain your weight also one more thing there is a drug that can be prescibed that helps protect your kidneys when you are being tested when you are prescribed it you would take 2 pills the day before testing then 1 the morning of testing then one more later that afternoon,if you would like the name of it let me know then i will look it up

NewDay's picture
NewDay
Posts: 175
Joined: May 2012

Tex,
Thanks for the link. There is a lot of good info there. I asked for referral to a nutritionist at my first appointment with the Oncologist, but when I called to make an appointment, I got a message that said she was no longer employed there. I dropped the ball and have not followed up. I have had several tests and the gastroenterologist still doesn't know what the problem is. He found abnormal things, but doesn't think they are the cause. I think he has given up and I may need to find a new one.

Limelife,

The eGFR calculation takes into account age, race, weight, BUN, and creatinine. Those factors may be why yours looks better. I would like the name of that drug please.

On a different note, I hope to be able to change the title for this thread soon. Being concerned that being "unclassified" might complicate things should I need treatment in the future, I had Emory send my slides to MD Anderson a couple of weeks ago. I called Emory to check the status and they said they received a request from MDA for more material, whatever that means. I'll let you know the results and update the title of this thread if I become classified.

In the mean time, I'll find a nutritionist. I guess I shouldn't whine if I'm not doing my part.

Thanks,

Kathy

Limelife50's picture
Limelife50
Posts: 411
Joined: Nov 2011

I checked my Walgreens history and found them they are called NAC 600MG Capsules qauntity 4, of course refer to your uroligist or your ONC about this drug

NewDay's picture
NewDay
Posts: 175
Joined: May 2012

Turns out I'm even more special than we thought.

I got my report from MD Anderson and they say

"The histologic features in conjuction with the immunohistochemical profile are suggestive of Xp11.2 translocation carcinoma."

I know it says "suggestive", but that is probably going to be as specific as I am going to get. It normally occurs in children and young adults, which I guess makes me even more special. This type of cancer accounts for less that 1% of adult Renal cell carcinoma. I haven't found much information, but what I have isn't good. I've always been a statistical sort of person, but as Tex has pointed out before, every individual case is different. Even if the statistics on this type were to say (making this up) only 1% survive 5 years, I think my tendency to be "special" means I will likely fall into that lucky 1%.

I came across an old thread started by someone with this type and I may reactivate it. Garym and Texas_Wedge had posts in it where they were encouraging them - no surprise there.

I am going to post on ACOR to see if any active members there happen to have it and are getting treatment.

I'm so glad you guys are here. I can't bring this up with my family because they don't understand and they think I'm cured, so why am I still dwelling on it.

Thanks for being here,

Kathy

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

It looks as if going for that second opinion and getting MDA to look at the slides was worth while doesn't it Kathy?!

I'm sorry that the prognosis is a poor one but that's not reaaly new - your prognosis as "unclassified" was already bad. The significant change is that you have advanced your information appreciably and so can focus more effectively on what can be done. I see Peggy has already pointed you to Dr. Tannir and Susan to Lindsay Middleton - both good calls. [I feel vindicated in what I said a while ago (above) about knowlege as power and the possible future significance of familial, hereditary issues. I'm just a little sorry that that prescience has been borne out.]

You now have more concrete info and more sense of control - things you can do. We continue in the same boat as rare types. I'm aware of two people who've had the same histology as myself but not sure if either is still alive (I fear not). You've just found out more about what you're dealing with and I've just started drug treatment a few hours ago, on Votrient, and WE'RE BOTH STILL HERE!

As usual now, I got woken after a couple of hours sleep, by pain, and I get up, have some tea and more painkillers and spend an hour or two at my PC before trying to get more sleep. Result is: I've seen the dialogue between Sandy and Susan and the latter's analysis of Prof. Hawkins's findings re IL2 and mTors all of which may bear on what I might hear from him on Monday about the possibility of him giving me HDIL2, down the line, if the NHS Scotland/England divide permits! Another illustration of the value of staying on top of the info and leaving no stone unturned - Fox-style.

Have you managed to stabilise your weight as yet and gain more control of your satiety problem? The more you learn, the better the chances of finding effective coping strategies, as you've already found out. One benefit of your new info is that it may help your nearest and dearest to get a better handle on the reality of the position you're in and feel more empathy.

With our extremely rare sub-types we have to spread our nets wide - ACOR is the obvious first port of call but you may want to look elsewhere as well - Cancer Compass, for instance? Whatever you discover, we keep our chins up, don't we? My mantra is that memorable declaration of Donna Lee's "we are the crew that are changing the numbers" - still one of the most inspiring formulations I've ever read - I keep thinking of starting a thread with that as the title but I don't want to do so only to see it slide out of sight as ever more threads are pointlessly started, re-inventing the wheel time after time :(

Hang in there Kathy and the best of luck to both of us!

Limelife50's picture
Limelife50
Posts: 411
Joined: Nov 2011

There was a thread started on this site concearning xp11.2 back on 3/31/2010 it was started by a member named Mookies Mom look it up

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Mike, that was the thread Kathy was already talking about! I think it might be a good idea for her to bring it up to the top again.

Kathy, I see that, as so often, Matt has come up with a raft of info for you and I hope some of it helps. Are you planning to enquire into possible heresditary aspects?

foxhd's picture
foxhd
Posts: 1951
Joined: Oct 2011

Kathy, now your demon has a head, a face, and no longer can hide. It is pretty ugly but you won't let it take over without a fight. It's always best to look your enemy head on. You can do it. FLY.

michy067
Posts: 8
Joined: Nov 2012

Hi,
I just registered and I am not really sure how to use these message boards yet. I came across this blog after typing in unclassified renal cell carcinoma. I would like to share my story and get your input if you guys would not mind. On Oct. 1, 2012 I brought my 19 yr old son to the doctor for what I thought was possible gallstones. My son is an athlete. He just finished his senior yr in high school and was the varsity baseball catcher and was also on the bowling team. He was a healthy 19 yr old boy. My son showed no symptoms except for telling me he felt funny, tossed and turned for two nights and had a funny feeling in his stomach/back. I felt his belly and felt that maybe his liver was a bit swollen and brought him to the pediatrician that day who agreed something seemed a little swollen. I insisted I get an ultrasound that day. The ultrasound turned into a ct which resulted in being told that my son appeared to have a cancerous tumor on his kidney which took up one side of his abdomen. The tumor was gigantic. They also saw something in his lungs and in his lymph nodes. This all happened in one day, on the day I brought him in thinking he may have gallstones. Of course we wanted the tumor out immediately but we were told it may be a Wilms tumor and that they would not want to take it out in that case but would prefer to treat it first. They did a biopsy and sent a sample out to Sloan and also to some central kidney tumor place. They kept calling it rare and unclassified. I wound up getting my son right into Sloan Kettering in the city and on OCT. 16 he had a radical nephrectomy. We waited for him to heal for 4 weeks and today, Nov. 13 we started a trial at Sloan of Everolimus and Bevacizumab. I am told I am with the best doc in the country, Dr. Motzer. I am also told that my son has an unclassified kidney cancer. It is non clear cell. My father in law passed away 10 yrs ago from clear cell renal cell carcinoma which is not related so I'm told. My 19 yr old son is coughing his brains out for the past week. I'm so scared! I do not understand how a healthy athlete, 19 yr old can suddenly be diagnosed with this and be so ill. No-one has told us the stage, but I know it because he has disease in his lungs, lymphs and also bones. I'm wondering what this MDX is that you speak of? I'm also wondering if any of you have any info that may help us? I really appreciate it and I wish everyone here a full recovery and a good life. Thank you so much! Michele from NJ

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Michelle, that must be just about the most dramatic instance of RCC that members here will ever learn of! How lucky it is that you are so decisive and acted so fast. Do you have medical expertise of some kind yourself? You must know that you have taken your Son to one of the World's top cancer treatment and research centres and put him in the hands of one of the most well-known and highly-regarded specialists, which is absolutely essential for such a case.

I'm going to attempt to address a little of what you have told us and others here may be able to go further but almost none of us has any medical knowledge or training and can really only speak to the snippets we pick up from each other or learn from academic papers found on the Web. I would strongly encourage you to keep posting here but also, as a matter of urgency, to join the list at KIDNEY-ONC which is another free online group but much better-informed than we are, being comprised, in part, of scientists, medical researchers and doctors. You will stand a better chance of gaining expert insight there than here, but the friendship and support here is second to none, and that in itself can be very valuable.

You are plainly very capable, but if you have problems getting on to KIDNEY-ONC you could look at the instructions on how to join given on another thread here which is to be found at:
http://csn.cancer.org/node/247312

Presumably the dx of Wilms has now been excluded? We do know that new sub-types of RCC are being constantly discovered. I have the chromophobe sub-type which was first recognised not that long ago. Kathy, who started this thread, was "unclassified" for a while and some of us urged her to seek a second opinion. She has lately done so and it paid off with a classification of the even rarer translocation Xp 11.2 sub-type. It is obviously useful to know as much as possible about the pathology we are faced with. Kathy has joined KIDNEY-ONC as well and will, I think, agree that it was a good move for widening her kmowledge-gathering net wider.

There is another lady who is on here, only occasionally now, and also benefits from being on KIDNEY-ONC (and also on Cancer Compass) whose situation is strikingly similar to your own. Like you, she has been fighting like a tigress for her Son, Cody, who is about your Son's age and at varsity. He has, the even rarer still, mucinous tubular spindle sub-type and he has made the most remarkable progress with his Mother's dedicated help. On here she is known as myboys2 and if you would like me to, I could endeavour to put you in direct touch with her. They have been to MSK and Cody has been under the care of the most loved of all the specialists in rare sub-types of kidney cancer, Dr. Janice Dutcher.

Finally, you asked about MDX. Here, I am able to give you a little real information. This is probably the hottest property in the pipeline right now (but there are many other exciting possibilities emerging in this extremely dynamic field of ennquiry). We have a leading light on these threads, a charismatic physical therapist, Fox ("foxhd") who was given up for dead a year or so back who is doing brilliantly in a trial of the drug and he can tell you about his personal experience. However, it may or may not be appropriate for your Son - not enough is known yet - both about your Son's histology and about this drug.

Anyway, it's a drug whose chemical name is nivolumab and it's a relatively giant molecule whose properties and side-effects are being studied intensively right now. Fox may wish to tell you how it is thought to achieve the miracles we seem to be seeing already. (I must say that I'm hoping to survive long enough to get a shot at it, if it looks like being suitable for my sub-type - alas, it's probably not.)

The drug (which is an anti-pd-1 human monoclonal antibody one) was a joint development involving a Company called Medarex, hence the trade designation of MDX-1106. Medarex (MDX) was recently bought by Bristol Myers Squibb who have relabelled it as BMS 936558 and they have exclusive rights apart from in three countries in the Far East, where it is under parallel trials by Ono Pharmaceuticals. Robert Motzer will undoubtedly be able to give you chapter and verse and will maybe have also considered whether it might have relevance for your Son's case.

The take home messages I would highlight in what I've said are to get over to KIDNEY-ONC asap and that comparing notes with myboys2 could be worthwhile and would undoubtedly helplift your spirits.

The above is a bit thin on substantial information of potential use to you but I hope it will serve as a welcome here and maybe a bit of encouragement in your battle.

I am alive
Posts: 223
Joined: Jul 2012

Michelle,
I am so sorry that your son and your family have to go through this. Barely a month in, your head must be spinning. It is overwhelming on every level. But you seem like a woman in charge and that is key. You are absolutely at the best place to be. Dr. Motzer, as you noted, is one of the few world class leaders in RCC treatment. His current non clear cell clinical trial is one of the very few efforts out there targeting us RCC subtypes. I have chromophobe RCC and have been in Dr.Motzer's trial for 16 weeks. Just had my second CT yesterday, but won't find out the results until I see Dr. Motzer next Tuesday. The first scan after 8 weeks showed a decrease in one node, stabilization in another, and a third node, which was necrotic, had "almost resolved itself." So that was encouraging. I'll post my second CT's results next week.
I have found the drug side effects to be minimal and passing in nature. The trial has a team of specialists who jump on problems that arrise to help you manage them quickly. The few, but annoying, mouth sores that popped up early on were treated and under control within a week. They haven't come back. An itchy rash on chest and back was likewise treated and within a day the itchiness disappeared and the rash began to recede a couple of days later. I do blow my nose a lot and have bloody mucous. A swab showed bacteria in my nose and I'm on my way out the door to pick up an anti-biotic for it. I usually get a headache around the third day after the infusion, but it goes away and you can treat it with Tylenol. Sore throats have also come and gone. I did develop what they call "ground glass opacities" in the lungs accompanied by shortness of breath on exertion - I can walk 30 city blocks and be fine but get short of breath if rushing anywhere, or carrying something heavy. It does not interfere with my day to day life.The situation has to be monitored closely though because it can develop into pneumenitis, which you don't want. It's a rare side effect. But I have noticed in the last month that the shortness of breath has improved, so I'm curious what yesterrday's scan will reveal about the opacities.
I think I saw you in Dr. Motzer's office on Nov. 13. Were you there with two sons? I saw a worried mother with two tall strapping young men and I wondered to myself "Who is the patient? Is it she? God I hope it's not one of the boys." Do you know about the patient portal that Sloan has? It's an easy and quick way to communicate with Dr. Motzer's office and monitor lab results. You can tell the trial nurse about a side effect that has appeared, or ask her or the office team questions and they get back to you promptly. Check out mymskcc.org. I see you live in New Jersey. I often use the Baskingridge satellite for CT scans, as I live in Pa. It's quite lovely, in a wooded area, very new and even offers free valet parking. A far cry from wrangling with the hassles of the city and a good alternative when you just need to get a CT. I have been a patient of Dr. Motzer's for four years,ever since my first metastasis appeared, and I am forever grateful. You can at least breathe a sigh of relief in that you have landed in a good place, with a good man. I will keep your son in my prayers.

michy067
Posts: 8
Joined: Nov 2012

Yes, I was the worried mom in the office! Yesterday was my son's first infusion and first day on the pills. Wow, what luck to find someone in the same study as soon as I posted this! I just got a cardiologist involved and also a pulminologist because his worse symptoms so far is coughing and a rapid heartbeat which all started since his radical nephrectomy. I am not in the medical field, but having three sons has taught me a lot. My son seems to be loaded with this cancer and I just don't understand how this happened! So far all the slides seem to show nothing except unclassified non clear cell carcinoma. I met another doctor in Motzer's office yesterday who said he is working on his cells in the lab to try and gain more info and to see what they may respond to. I pray every day and my family has so much support in town and I think I got him the best doctors, but the extent of the disease seems pretty bad, especially that he is having coughing fits. This is ridiculously scary! I will keep all of you in here in my prayers also.

michy067
Posts: 8
Joined: Nov 2012

Thank you for all the info. I truly appreciate you taking the time to respond to me. Good luck to you and we will keep in touch! Texas - I would love to get in touch with the mom of 2 boys!

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

OK, I've now emailed her, explaining your situation and asking her to contact you here or on KIDNEY_ONC or email you direct (I've given her your contact details). I'm pretty confident she will respond and that it will be of help to you. Good luck.

I am alive
Posts: 223
Joined: Jul 2012

Michelle
I am actually responding to a question you posted on kidney onc but for some reason I can't access that list serv today so here goes: you're confused and you want to make sure you have done absolutely everything that is possible to help your son. So why not get a second opinion from Dr. Tannir at MD Anderson? He specializes in non clear cell RCC (not many do) and is another top doc in the field. Get on the phone today and see if you can get out there ASAP for a consult, but continue in the clinical trial you have already started, continue with the tests at Sloan. You'll know with the first 8wk CT if your son's cancer is responding to the trial. The two doctors can discuss the case with each other. You'll gather more information from their perspectives, and thus feel more confident in choices made. There's a Dr. Rinni (spelling?) at Cleavland Clinic who is also highly regarded, and Dr. Keith Flaherty at Massachusetts General Hospital in Boston who I think is now involved in the genetic aspect of all this (I consulted with him years ago when he was at the Hospital of the University of Pennsylvania and liked him very much - he was an instrumental player in the recent breakthrough in targeted drug therapy for metastatic melanoma.)
Of course you are concerned about the hereditary link. Contact the NIH for more information about tests and links and advice on how to proceed with your sons. But I think at some point too many chefs in the kitchen creates chaos. Still, info from NIH gives you more info to unpack with Motzer, Tannir, et al. Ask them their opinions. And if they disagree ask them to explain why. These are the top guys. Bring a tape recorder if you dont feel up to writing down what they say. Review it later when the fog clears.
Most everyone on this board thinks in terms of "plan B" - what to do after the drug they are currently on stops working, because eventually they all stop working. So you want to ask about that, about what other drugs unclassified RCC responds to. But keep in mind that the terrain is ever changing and everyone's cancer is really unique. You want to ask what new, perhaps not yet FDA-approved drugs are in the pipeline and might be appropriate for your son. What other possibly appropriate clinical trials are out there. What about targeted radiation? Surgery? If you get second or even third opinions ask each of them everything you can think of! Be honest. If confused about seemingly conflicting info, say so.
You need to move away from the unbelieving place where this all began and put on your armor. You may never know why this happened. Why becomes irrelevant pretty quickly. But so much is happening in RCC that there is plenty to be hopeful about. Best advice I got early on was "Stay in the light." it's all around you. Just step into it. And don't forget to take care of yourself, Mom. See a shrink. Unload with family and friends. Vent here. Get outside and take a walk. Take a yoga class. Get a dog. Whatever you have to do. As hard as it is to believe at this moment, It does get better. You are doing everything right.

michy067
Posts: 8
Joined: Nov 2012

Thank you,

I will contact the NIH. Where is MD Anderson located? I do believe the Cleveland clinic has my sons slides. Is that the place called central where they bank all the tumors? I will reach out and speak to others, but I just don't want to get confused because we just started meds three days ago.

I am alive
Posts: 223
Joined: Jul 2012

Michelle,
Good plan. MD Anderson is in Houston, Tx. It's another great cancer treatment center. I don't know where they bank tumors. I actually think you are in the best place at Sloan with Dr. Motzer, but I understand the need to touch all bases, gather all info, weigh options. There's a point where you can make yourself crazy, but sometimes knowing what's out there helps give you a sense of control. Peg

michy067
Posts: 8
Joined: Nov 2012

I don't know why I just assumed you were male! So we are on day 5 of the first round of this protocol. Protocol = trial? I thought protocol meant standard treatment plan at first. Robbie has a terrible cough. It is literally making him throw up. It has been getting worse but I know it is not the treatment. It is the disease itself causing it so I'm told. I went to pulminologist and got some cough medicine but so far it is not working very well. I also brough him to the cardiologist because his pulse has been so fast since the surgery. The doc said his heart is fine, but Robbie is so uncomfortable because he is an athlete and is used to a pulse of 65 and now it is over a hundred resting and if he just stands it jumps to 140. He says he is "gassed" all the time. He also developed a really bad sore throat on day 3 and if it is not getting better I will call Pauline on Monday at Motzer's office. They called in a mouth rinse that may help they say, but his glands are hurting so I'm thinking it is viral. He also told me he is freezing and woke up soaking wet in the middle of the night last night. Not sure what that is but he does not have a fever. He feels so awful. I almost feel like pulling him right out of this trial and saying no trial, get him on the bone meds and the other drugs if possible, but I suppose I'm jumping the gun here and Motzer knows a lot more than I do.

You said I could reach someone on the MSK site? I did register Robbie and I confirm appointments and view bloodteast results there, but would I reach Pauline to ask questions? Who would I be asking questions to?

Michele

alice124's picture
alice124
Posts: 860
Joined: Mar 2012

Hello Michele,

I'm afraid I can't offer much in expertise, but want you and Robbie to know that you are in my and John's thoughts and prayers. It hurts to see everything the two of you are experiencing and read each new post with a silent prayer that his condition will improve. You're getting first caliber advice from Peg and Tex, but I wanted you to know that in the emotional support area, you have lots more company.

I am alive
Posts: 223
Joined: Jul 2012

Michele,
(I've been misspelling your name all along. I'm sorry! Yup, I'm not a man. I'm a fellow mom, which is why I feel your pain so acutely.) Robbie's having a rough time of it but I'm hoping his symptoms will ease as his body absorbs and acclimates to the drugs. I've had sore throats on and off, and once had a bad sore throat for 12 days. For the last week of it I also felt something in my throat when I swallowed. Finally got it under control by sucking those Hall's (sp?) eucalyptus throat lozenges all the time, sipping constant hot water w/ lemon & honey, and gargling (up to 5 times a day) with BIOTENE PBF oral rinse. (BIOTENE is a must-have, it also works well on mouth sores and is a good thing to use for daily oral care, along with brushing teeth with a soft-bristled baby toothbrush. You can buy it over the counter at the drugstore.) During the sore throat saga I got a prescription for what they call MAGIC MOUTH WASH which I hated and ended up not using. It tasted terrible and because it has lidocaine in it it numbs, which freaked me out because I didn't like the feeling of a numbed throat. I think it would probably be a godsend if you had bad mouth sores though. The sore throat began easing with the 5x day BIOTENE deep gargling routine.. I've also had chills with no fever. For me, these symptoms passed. Knowing that they are typical and will pass may make them easier to bare.
As for directly contacting Pauline via the mymskcc site, I think you can do that by addressing her at the top of your message. Nurses in Dr. Motzer's office get the message and they can just route it to Pauline. I think she is in that office when not on the floor with patients. If Robbie develops other symptoms, like the mouth sores, it's good to be able to alert Pauline right away rather than wait a week or two for your next office visit. She might be able to get you a prescription for TRIAMCINOLONE so you can start treating the sores pronto, nip them in the bud. ( Mouth sores? Yes, more fun to look forward to. Remember, though, it's all transient.)
Do you live nearer New York or Philadelphia? I ask because when I started the trial I was nervous about all the stated potentially serious side effects of the drugs and the distance I'd have to travel if I needed medical attention right away (I live outside Philadelphia). Dr. Motzer suggested I get a local oncologist onboard who would be familiar with the trial drugs. He gave me a few names, all of whom are familar with him and his work. I chose one, met her once for a meet & greet. She gave me her emergency phone numbers and that was that. I haven't seen her since but I feel like I'm prepared should there be a local emergency of some sort. She is sent my test and lab results so she has an up to date record of what's going on. If you are near New York of course you can just bop over the Hudson and get to Sloan. My husband and I are big on contingency plans, as you have probably surmised by now. It's that illusive feeling of control that we're after....and I laugh as I say that. Gallows RCC humor. Still, we do what we must do. Sending a big hug to both you and Robbie. I hope the rest of your weekend sees an ease of his symptoms. Peg

michy067
Posts: 8
Joined: Nov 2012

Peg,
I feel like I'm taking up someone elses space on this post so is there another way we can keep in touch without me taking away from the original person who started this thread? I was at sloan all day again today in urgent care. UGH! Here is what's going on.

Robbie told me this morning that he woke up in the middle of the night in a pool of sweat. He felt freezing this morning so I took his temp. It was 101.5 so I called the number I was given. I took him into the urgent care and by the time I got there he felt better and temp was 99.6. Tons of coughing still and terrible sore throat, swollen glands, nasal passages irritated. Chest xray looked ok, no pneumonia or surprises. A couple hours later he told me he was freezing again. Temp was 100.6. An hour later temp was normal. Strange! They took blood and cultures. Said white counts were good. Nurse said that meant it was not bacterial, doc said it meant it was not viral. Yup, total contradicting each other. Possible strep but since they do not have quick strep tests we will not know until Monday. Doc ordered Lavaquin and they could not reach Motzer, so they checked with someone else and said Levaquin was ok and that he had to skip his cancer pill tomorrow and call the office Monday morning. Could be from the cancer pill. Unsure. The thing is that we spent all day at Sloan yesterday at the pulminologist and cardiologist. I asked yesterday for a strep test!!! They did not do it. I did get the mouthwash that the pharmacy made up but all it is is saline and dexamethasone which he started tonight. I do not like that they could not get in tough with Dr. Motzer. I felt like I had to direct the doctor on call to find someone to figure out what antibiotic he was allowed to take. Also speaking to others after hours who can call stuff into pharmacy and who seem to know what they are talking about does not seem to go well either! I guess I'm used to my pediatricians and this is a whole new ballgame! Hopefully Dr. Motzer will figure this out and speak to me directly on Monday. Hope things are going better for you!!!!!

Michele

NewDay's picture
NewDay
Posts: 175
Joined: May 2012

Hi Michelle,

This is Kathy(NewDay). I started this thread after my tumor was deemed "unclassified". Do not worry that you are taking anything away from me. Your posting here is very appropriate since your son's tumor was also unclassified and someone new here searching for that term will find both our experiences with it here. I will mention though that this one has become so long, I may start a new one soon. You may want to as well since I am currently NED (have not evidence of disease) while your son's situation is much more serious and more urgent.

If the strep test should come back positive, they may take it lightly because it is so common, but I would insist on a very strong antibiotic. There is a condition called "Post-streptococcal glomerulonephritis". Before I say this, let me emphasize that this was 45 years ago, but my 17 year old brother died as a result of it. It is where the strep bacteria causes damage to the kidneys. He had only one kidney and we were told it was already damaged before contracting the disease. I don't want to be an alarmist because the condition is rare these days, but so is unclassified renal cell carcinoma.

It is such a helpless feeling to see someone in your situation and not be able to help. I can tell you that the people here and on the ACOR site are invaluable, not only for information, but for support. This experience is not only emotionally overwhelming, but all of the technical information to process and sort through is also overwhelming and you feel you are trying to make what could be life and death decisions blindly on the fly. You are not alone. I'm still fairly new to this so all I can offer is my heartfelt prayers. In fact, I'm about to get ready for church now and I'll ask them to pray for you, your son and your whole family as well. Remember to take care of yourself. Lest you should think that would somehow be selfish, I have been a caregiver for someone ill and you cannot help them if you become ill yourself.

Kathy

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Kathy, what's wrong with a thread being long? Better, I think, to keep the material together than to keep creating new threads (and often without a sensible topic name).

NewDay's picture
NewDay
Posts: 175
Joined: May 2012

Funny. When I was writing that, I started to preface it with "I know how much Tex hates new threads, but...."

It doesn't really matter to me. I just didn't know how much people minded having to scroll all the way down and over.

Michelle, I wasn't trying to run you off. We can continue together so that those searching for "unclassified" will have it all together, but, of course, it's up to you.

Kathy

michy067
Posts: 8
Joined: Nov 2012

OK with me! By the way, I'm so glad you are doing so well Kathy?

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Just to clarify my position: I'm not at all averse to someone starting a new thread for a topic not addressed before, or one not visited for a long while.

What galls me is to see valuable threads like this disappear from sight because of endless new threads that aren't called for - e.g. a subject like "Hello" and a content of the type "I have kidney cancer and I'm going to have an operation. Has anybody else had this experience?" That's not just dumb, it's LAZY. Anyone coming on here surely ought to take the trouble to read a bit first, at least some of the threads here, and think about how and where to make their first appearance. That doesn't mean anyone needs to be reluctant to join us - they just need to think for a moment before they act.

I've suggested to CSN that an advisory box could be shown when someone elects to start a new thread, asking 'Before you start a new thread, have you checked whether there is an appropriate thread already, where you could post your message?' Attention could be drawn to the search facility to enable the prospective poster to do at least a cursory check without much effort. This has the considerable benefit of helping the poster to discover answers that are already there, instead of constant re-invention of the wheel. It also means that all the material on a given topic can be better kept together so that a searcher doesn't have to look at fifty different threads to get little pieces of a particular jigsaw. As you can gather I feel quite strongly about this and I make no apology for wanting this excellent forum to be as effective as it possibly can be for the benefit of regulars and newcomers alike.

NewDay's picture
NewDay
Posts: 175
Joined: May 2012

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

I am alive
Posts: 223
Joined: Jul 2012

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 ........

I am alive
Posts: 223
Joined: Jul 2012

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's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

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's picture
angec
Posts: 626
Joined: Mar 2012

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's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

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
Posts: 8
Joined: Nov 2012

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
Posts: 223
Joined: Jul 2012

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
Posts: 223
Joined: Jul 2012

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's picture
angec
Posts: 626
Joined: Mar 2012

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
Posts: 1
Joined: Nov 2012

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's picture
NewDay
Posts: 175
Joined: May 2012

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's picture
NewDay
Posts: 175
Joined: May 2012

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's picture
foxhd
Posts: 1951
Joined: Oct 2011

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

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

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's picture
alice124
Posts: 860
Joined: Mar 2012

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.

AprilandChuck's picture
AprilandChuck
Posts: 95
Joined: Feb 2013

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's picture
NewDay
Posts: 175
Joined: May 2012

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's picture
foxhd
Posts: 1951
Joined: Oct 2011

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's picture
NanoSecond
Posts: 547
Joined: Oct 2012

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's picture
NewDay
Posts: 175
Joined: May 2012

Just sharing the good news that my scans were normal!

icemantoo's picture
icemantoo
Posts: 1593
Joined: Jan 2010

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

 

Icemantoo

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