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Comments
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Hellofoxhd said:demon
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.
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 NJ0 -
Hellomichy067 said:Hello
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
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.0 -
I'm in Motzer's everolimus/bevacizumab trial tooTexas_wedge said:Hello
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.
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.0 -
That was meI am alive said:I'm in Motzer's everolimus/bevacizumab trial too
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.
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.0 -
Thank you!Texas_wedge said:Hello
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.
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!0 -
Contactmichy067 said:Thank you!
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!
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.0 -
Second opinions can clear the headTexas_wedge said:Contact
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.
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.0 -
thank you I am aliveI am alive said:Second opinions can clear the head
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.
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.0 -
Optionsmichy067 said:thank you I am alive
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.
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. Peg0 -
Peg?I am alive said:Options
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
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?
Michele0 -
thoughts and prayers with youmichy067 said:Peg?
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
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.0 -
Michele,alice124 said:thoughts and prayers with you
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've been
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. Peg0 -
PegI am alive said:Michele,
(I've been
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
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!!!!!
Michele0 -
Welcome to this threadmichy067 said:Peg
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
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.
Kathy0 -
ThreadNewDay said:Welcome to this thread
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
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).0 -
OKTexas_wedge said:Thread
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).
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.
Kathy0 -
OKNewDay said:OK
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
OK with me! By the way, I'm so glad you are doing so well Kathy?0 -
OK indeed!michy067 said:OK
OK with me! By the way, I'm so glad you are doing so well Kathy?
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.0 -
OK OK OK OKTexas_wedge said:OK indeed!
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.
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.
Kathy0 -
Checking inNewDay 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
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 ........0
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