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  • pjune127
    pjune127 Member Posts: 127

    Trials and treatments
    adman, Fox, Clara, Mike - thank you all for your kind words which are much appreciated, not least by my Daughter (who 'phoned tonight to tell me she loves me, just in case things move rapidly in the wrong directon) who looks at these threads occasionally.

    Clara, thanks for the links and yes, I really would like the full text of Jan Dutcher's recent paper.

    Chin up...
    Tex, I am devastated to know that you are back in the boat with so many of us. It is so disappointing after such good news and progress. Your attitude and knowledge will carry you far and as you always remind us, positive thoughts make us well. Your invitation to Atlanta still stands of course. Even just to change your scenery if necessary. Autumn is a beautiful time in the states. Take care of yourself first and foremost. Hugs, prayers, and light sent to you from me.

    xoPaula
  • I am alive
    I am alive Member Posts: 315
    pjune127 said:

    Chin up...
    Tex, I am devastated to know that you are back in the boat with so many of us. It is so disappointing after such good news and progress. Your attitude and knowledge will carry you far and as you always remind us, positive thoughts make us well. Your invitation to Atlanta still stands of course. Even just to change your scenery if necessary. Autumn is a beautiful time in the states. Take care of yourself first and foremost. Hugs, prayers, and light sent to you from me.

    xoPaula

    When the going gets tough......
    Tex,
    I'm so sorry you're in such a tight spot. Sending prayers and light your way. Pax.
  • NewDay
    NewDay Member Posts: 272

    When the going gets tough......
    Tex,
    I'm so sorry you're in such a tight spot. Sending prayers and light your way. Pax.

    ON MY MIND
    Hi Tex,

    Just stopping by to say I think of you often. If only my thinking of you would help your situation somehow. I really like your pics. It is cool that, now when I think of you, I have a mental picture. Sorry you ever had to join this club, but glad you are here. I can't imagine what it was like before you joined and definitely don't want to find out. I hope you feel bouyed up by all of the prayers and positive thoughts sent by everyone here. Hang in there.

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

    ON MY MIND
    Hi Tex,

    Just stopping by to say I think of you often. If only my thinking of you would help your situation somehow. I really like your pics. It is cool that, now when I think of you, I have a mental picture. Sorry you ever had to join this club, but glad you are here. I can't imagine what it was like before you joined and definitely don't want to find out. I hope you feel bouyed up by all of the prayers and positive thoughts sent by everyone here. Hang in there.

    Kathy

    CSN community
    Thanks for your kind sentiments Kathy.

    These forums do seem to have enormous value, both in sharing experience and information and in reciprocal support. I do, indeed, draw benefit from contact with all my friends here and I'm sure many of us would have a tougher time without this community which strengthens all our spirits.

    Your other pic of you and Checkers has been appreciated and Rae has some nice shots on her expressions page. Her shot of the Michigan shoreline is appealing but puzzled me - it looked so familiar and then I realised it looks very much like a spot on the coast of the Cape in South Africa but I guess that sort of wooden walkway can be found in quite a few places!

    As for hanging in - depend on it! Next thing I want to investigate is how close a lifestyle to their previous lives people can manage to maintain when on RCC drugs - e.g. whether those on Sutent can play golf if they have bad hand/foot syndrome! We get glimpses of this but most of us understandably shy away from detailing the impact it has on our lives.
  • ClaraW
    ClaraW Member Posts: 64

    CSN community
    Thanks for your kind sentiments Kathy.

    These forums do seem to have enormous value, both in sharing experience and information and in reciprocal support. I do, indeed, draw benefit from contact with all my friends here and I'm sure many of us would have a tougher time without this community which strengthens all our spirits.

    Your other pic of you and Checkers has been appreciated and Rae has some nice shots on her expressions page. Her shot of the Michigan shoreline is appealing but puzzled me - it looked so familiar and then I realised it looks very much like a spot on the coast of the Cape in South Africa but I guess that sort of wooden walkway can be found in quite a few places!

    As for hanging in - depend on it! Next thing I want to investigate is how close a lifestyle to their previous lives people can manage to maintain when on RCC drugs - e.g. whether those on Sutent can play golf if they have bad hand/foot syndrome! We get glimpses of this but most of us understandably shy away from detailing the impact it has on our lives.

    Hey TW,
    Just wondering if

    Hey TW,
    Just wondering if you had a chance to skim through those articles. If you need any other articles, please let me know :)
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    ClaraW said:

    Hey TW,
    Just wondering if

    Hey TW,
    Just wondering if you had a chance to skim through those articles. If you need any other articles, please let me know :)

    Papers
    Want to study them and haven't had enough time yet. Last day of attending big court case today, then dentist and oncologist tomorrow. Will respond asap.
  • ClaraW
    ClaraW Member Posts: 64

    Papers
    Want to study them and haven't had enough time yet. Last day of attending big court case today, then dentist and oncologist tomorrow. Will respond asap.

    No need to hurry at all Tex
    I justed wanted to know that I've sent them to the correct email address that's all. No need to read them asap! But I do hope you see your oncologist and get a treatment plan asap :) All the best dear TW for this Friday. Will you thinking if you!
    Best wishes, always.
  • NewDay
    NewDay Member Posts: 272
    ClaraW said:

    No need to hurry at all Tex
    I justed wanted to know that I've sent them to the correct email address that's all. No need to read them asap! But I do hope you see your oncologist and get a treatment plan asap :) All the best dear TW for this Friday. Will you thinking if you!
    Best wishes, always.

    Questions on CT vs. MRI and bloodwork
    Hello everyone,

    I saw my Oncologist last week. I asked if my December scans could be MRI instead of CT since I can't have contrast (my last creatinine reading was 1.8). He said "hhmmmmmmm, that's a lot of magnet." and motioned with his hands above and below the area to be scanned. He said we should stick with CT and decide whether to do contrast based on that day's blood work. Well, it still came back 1.8 even though I worked hard to be well hydrated. I've never heard that MRI's could be harmful unless you had metal somewhere. I know MRI's are move expensive and I don't know if my insurance company would approve it, but I might push for it except that the doc doesn't seem to want to do it.

    Next question: A lot of numbers came back flagged as low and high based on the ranges used by the lab. The nurse says they are close to my last numbers so they consider me stable. Granted the numbers aren't real low, but they have dropped. Do I need to question this more or assume it's OK to ignore?

    Any opinions on either issue?

    Kathy
  • Limelife50
    Limelife50 Member Posts: 476
    NewDay said:

    Questions on CT vs. MRI and bloodwork
    Hello everyone,

    I saw my Oncologist last week. I asked if my December scans could be MRI instead of CT since I can't have contrast (my last creatinine reading was 1.8). He said "hhmmmmmmm, that's a lot of magnet." and motioned with his hands above and below the area to be scanned. He said we should stick with CT and decide whether to do contrast based on that day's blood work. Well, it still came back 1.8 even though I worked hard to be well hydrated. I've never heard that MRI's could be harmful unless you had metal somewhere. I know MRI's are move expensive and I don't know if my insurance company would approve it, but I might push for it except that the doc doesn't seem to want to do it.

    Next question: A lot of numbers came back flagged as low and high based on the ranges used by the lab. The nurse says they are close to my last numbers so they consider me stable. Granted the numbers aren't real low, but they have dropped. Do I need to question this more or assume it's OK to ignore?

    Any opinions on either issue?

    Kathy

    Hi Kathy
    Let me address the creatinine,after my right nephrectomy in 10/04/11 my creatinine stayed around 1.4 until a tumor was found on my left kidney after having RFA performed on 05/02/12 my creatinine went up to 1.8 but on my last check on 09/21/12 my creatinine improved to 1.5 so my advice is keep drinking plenty of fluids and in time you should see some improvement.I think Tex can advise you on the CT scan i believe there is a procedure where they do both a PET scan and a CT scan the same day then compare the two at the same time to get a more acurate account as what is going on. Good Luck
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    NewDay said:

    Questions on CT vs. MRI and bloodwork
    Hello everyone,

    I saw my Oncologist last week. I asked if my December scans could be MRI instead of CT since I can't have contrast (my last creatinine reading was 1.8). He said "hhmmmmmmm, that's a lot of magnet." and motioned with his hands above and below the area to be scanned. He said we should stick with CT and decide whether to do contrast based on that day's blood work. Well, it still came back 1.8 even though I worked hard to be well hydrated. I've never heard that MRI's could be harmful unless you had metal somewhere. I know MRI's are move expensive and I don't know if my insurance company would approve it, but I might push for it except that the doc doesn't seem to want to do it.

    Next question: A lot of numbers came back flagged as low and high based on the ranges used by the lab. The nurse says they are close to my last numbers so they consider me stable. Granted the numbers aren't real low, but they have dropped. Do I need to question this more or assume it's OK to ignore?

    Any opinions on either issue?

    Kathy

    Scanning choices
    Kathy, could you re-cap the salient points on your contrast problem? I'm thinking of kidney function parameters, reaction, co-morbidities, etc. How is your weight now and your general physical performance level?

    Perhaps you should tackle your onc on the topics of how real (and, if so, how great) the risk is from contrast. You and I have very aggressive cancers and the importance of keeping tabs on them would over-ride anything less than serious risks from the dye. You could enquire about 1/2 dose contrast, iv saline and whether orally taken contrast might be a tolerable alternative to infused.

    If MedScanMan picks this up, you'll get really useful guidance. Meanwhile, keep the chin up.
  • NewDay
    NewDay Member Posts: 272

    Scanning choices
    Kathy, could you re-cap the salient points on your contrast problem? I'm thinking of kidney function parameters, reaction, co-morbidities, etc. How is your weight now and your general physical performance level?

    Perhaps you should tackle your onc on the topics of how real (and, if so, how great) the risk is from contrast. You and I have very aggressive cancers and the importance of keeping tabs on them would over-ride anything less than serious risks from the dye. You could enquire about 1/2 dose contrast, iv saline and whether orally taken contrast might be a tolerable alternative to infused.

    If MedScanMan picks this up, you'll get really useful guidance. Meanwhile, keep the chin up.

    Decision factors
    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
    Texas_wedge Member Posts: 2,798
    NewDay said:

    Decision factors
    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

    Management
    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
    Limelife50 Member Posts: 476
    NewDay said:

    Decision factors
    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

    Hi Kathy
    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
    NewDay Member Posts: 272

    Hi Kathy
    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

    Will seek nutritionist
    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
    Limelife50 Member Posts: 476
    NewDay said:

    Will seek nutritionist
    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

    Hi Kathy
    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
    NewDay Member Posts: 272

    Hi Kathy
    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

    Classified Translocation Carcinoma Xp11.2
    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
    Texas_wedge Member Posts: 2,798
    NewDay said:

    Classified Translocation Carcinoma Xp11.2
    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

    Xp 11.2
    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
    Limelife50 Member Posts: 476
    NewDay said:

    Classified Translocation Carcinoma Xp11.2
    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

    Hi Kathy
    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
    Texas_wedge Member Posts: 2,798

    Hi Kathy
    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

    Translocation RCC
    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
    foxhd Member Posts: 3,181 Member

    Translocation RCC
    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?

    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.