1st follow up scan not good

NanaLou
NanaLou Member Posts: 71
in Kidney Cancer #1
Well I got the results from my CT today. It is in several lymp nodes on the side I had the Kidney removed from. The largest being 4.6cm. I will be starting Sutent soon. I have to do a MRI of my brain Sat. Then I will start treatment after that. Wish me luck and say some prayers!
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Comments

  • Jamie1.3cm
    Jamie1.3cm Member Posts: 188
    #2
    sutent
    A lot of people have had really good results from the sutent. It can shrink or even eliminate kidney cancer metastasis.

    Have they biopsied the lymph nodes or talked about removing them? Have you had a chest xray yet?

    I, too, have had to have one follow up test after another because something "suspicious" keeps showing up on each test. So far, everything that has popped up has been benign.
  • icemantoo
    icemantoo Member Posts: 3,361 Member
    #3
    Our prayers are with you
    NanaLou,

    Over the past 9 and 1/2 years I have seen many of our members including those who come into this like you with a lot more baggage than I benefit from the new drugs and treatments many of which were not available a few years ago. Our prayers are with you conquor this monster.


    Icemantoo
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    #4
    icemantoo said:

    Our prayers are with you
    NanaLou,

    Over the past 9 and 1/2 years I have seen many of our members including those who come into this like you with a lot more baggage than I benefit from the new drugs and treatments many of which were not available a few years ago. Our prayers are with you conquor this monster.


    Icemantoo

    Sutent
    Good luck Nancy - count me as another who's thinking of you. Remember the Stephen Jay Gould article! Have you tried the Essiac tea? I'm drinking more green tea which, fortunately is a tea I've always liked. I'm wondering whether in a few days time I'll be discussing whether Sutent is possible for me too. If so I guess we can compare notes.
    I hope that 4 year-old had a great Christmas.
  • braswelm
    braswelm Member Posts: 41
    #5
    best of luck
    Wishing you the best, NanaLou, and our prayers are definitely with you!
    Mike
  • foxhd
    foxhd Member Posts: 3,181 Member
    #6
    braswelm said:

    best of luck
    Wishing you the best, NanaLou, and our prayers are definitely with you!
    Mike

    nana
    Give 'em Hell, Nana!
  • NanaLou
    NanaLou Member Posts: 71
    #7
    foxhd said:

    nana
    Give 'em Hell, Nana!

    It is what it is
    I will give them as much hell as I can. I am at work today. I am far from giving up. I am going to try to see if I can work on this sutent. Time will tell. I have to get it first. They did a CT of my chest at the same time. It only shows the 4mm spot that was there in october. I have to have a MRI of my brain Sat. Tex- I haven't gotten the tea yet. The oncologist said not to get it because it was a preventative measure. I don't see what it would hurt. He told me to drink green tea. I was told they could not cut it out and a biopsy was not even talked about. I am pretty postivie. I have my moments of crying. I feel pretty good to have this cancer in me. Kinda still don't believe it all. Thank you all for you responses.

    NanaLou

    PS that four year old had a great christmas. She is spoiled rotten.
  • LISAinTN
    LISAinTN Member Posts: 143
    #8
    Praying for you,
    Praying for you, Nanalou.

    Blessings,
    Lisa
  • snydergirl
    snydergirl Member Posts: 15
    #9
    LISAinTN said:

    Praying for you,
    Praying for you, Nanalou.

    Blessings,
    Lisa

    How do they know that it is
    How do they know that it is in Local lymph nodes, were they swollen at time of surgery? or have they swollen since surgery.

    Jeanne
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    #10
    LISAinTN said:

    Praying for you,
    Praying for you, Nanalou.

    Blessings,
    Lisa

    Sutent; green tea.
    As iceman says the scene has changed a lot since his first engagement with the enemy and as Jamie says some people get a lot of benefit from Sutent. Good luck and more prayers for the upcoming investigations.

    I was chuffed to hear that your oncologist recommended green tea and I went straight to my kitchen and made myself another mugful. It's a good source of fluid intake and has a pleasing fresh astringency that I really enjoy. Whenever we eat out Chinese we drink gallons of the stuff. It's well established that it reduces depression so when your mood gets down it's a useful part of your armoury. It gets favourable mention in the excellent Wikipedia entry on the Management of depression.

    So glad that that 4 year-old got spoilt rotten and I just hope someone spoils you as much as you deserve.
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    #11
    LISAinTN said:

    Praying for you,
    Praying for you, Nanalou.

    Blessings,
    Lisa

    Sutent; green tea.
    Nancy, as iceman says, the scene has changed a lot since his first engagement with the enemy and as Jamie says some people get a lot of benefit from Sutent. Good luck and more prayers for the upcoming investigations.

    I was chuffed to hear that your oncologist recommended green tea and I went straight to my kitchen and made myself another mugful. It's a good source of fluid intake and has a pleasing fresh astringency that I really enjoy. Whenever we eat out Chinese we drink gallons of the stuff. It's well established that it reduces depression so when your mood gets down it's a useful part of your armoury. It gets favourable mention in the excellent Wikipedia entry on the Management of depression.

    So glad that that 4 year-old got spoilt rotten and I just hope someone spoils you as much as you deserve.
  • garym
    garym Member Posts: 1,647
    #12
    NanaLou said:

    It is what it is
    I will give them as much hell as I can. I am at work today. I am far from giving up. I am going to try to see if I can work on this sutent. Time will tell. I have to get it first. They did a CT of my chest at the same time. It only shows the 4mm spot that was there in october. I have to have a MRI of my brain Sat. Tex- I haven't gotten the tea yet. The oncologist said not to get it because it was a preventative measure. I don't see what it would hurt. He told me to drink green tea. I was told they could not cut it out and a biopsy was not even talked about. I am pretty postivie. I have my moments of crying. I feel pretty good to have this cancer in me. Kinda still don't believe it all. Thank you all for you responses.

    NanaLou

    PS that four year old had a great christmas. She is spoiled rotten.

    Warriers...
    Dear NanaLou,

    You are a battle tested and proven warrior! The ups and downs come with the fight, but we always bounce back more fierce than ever once our minds are set and a battle plan is in place. Stare the demon down and spit in his eye, attack with extreme prejudice, use every weapon in the arsenal, take no prisoners, and remember the Lord is always at your side.

    His will be done,

    Gary
  • robert_douglas_smith
    robert_douglas_smith Member Posts: 82
    #13
    In our thoughts
    Will be Thinking and Praying for you, Nanalou.

    Doug
  • etrainor
    etrainor Member Posts: 8
    #14
    May I ask what your initial
    May I ask what your initial results were after your nephrectomy? Was your pathology report clear and then at your at your next check up did they discover the nodes? I wish you well on the Sutent. Please update us on your progress. Colleen
  • newenglandguy
    newenglandguy Member Posts: 66
    #15
    etrainor said:

    May I ask what your initial
    May I ask what your initial results were after your nephrectomy? Was your pathology report clear and then at your at your next check up did they discover the nodes? I wish you well on the Sutent. Please update us on your progress. Colleen

    Missed this post. Nanalou
    Missed this post. Nanalou saying prayers for you. Please keep us updated. Hoping to hear you indicate your brain scan was clear and you've selected a course of action.
  • NanaLou
    NanaLou Member Posts: 71
    #16
    newenglandguy said:

    Missed this post. Nanalou
    Missed this post. Nanalou saying prayers for you. Please keep us updated. Hoping to hear you indicate your brain scan was clear and you've selected a course of action.

    Brain scan was clear
    The brain scan was clear. I started Sutent on January 30th. So I have been on it for 2 1/2 weeks now. So far so good. Only side affects so far are taste change and acid reflex has worsened. I am getting red spots on me, but I have always had sensitive skin. I am still working and for the most part don't even know I have Cancer. When I had my surgery in November the Dr. thought he had gotten it all. My scan in January showed several lymph node in the area where the kidney was removed. My path report from surgery says it is 95% sarcomatoid. Which is highly aggressive. I had blood work done on Monday the 13th. It is looking better so maybe it is working. I go back next month for more blood work and then will have a scan sometime in April. I have been trying to eat a better diet. More fruit and veggies and less junk. I say a prayer everynight when I take my pills. So I feel like I am doing all I can do. Thank you all for your prayers. I wish you all great health!!

    Nancy
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    #17
    NanaLou said:

    Brain scan was clear
    The brain scan was clear. I started Sutent on January 30th. So I have been on it for 2 1/2 weeks now. So far so good. Only side affects so far are taste change and acid reflex has worsened. I am getting red spots on me, but I have always had sensitive skin. I am still working and for the most part don't even know I have Cancer. When I had my surgery in November the Dr. thought he had gotten it all. My scan in January showed several lymph node in the area where the kidney was removed. My path report from surgery says it is 95% sarcomatoid. Which is highly aggressive. I had blood work done on Monday the 13th. It is looking better so maybe it is working. I go back next month for more blood work and then will have a scan sometime in April. I have been trying to eat a better diet. More fruit and veggies and less junk. I say a prayer everynight when I take my pills. So I feel like I am doing all I can do. Thank you all for your prayers. I wish you all great health!!

    Nancy

    Sutent, diet, histology
    Nancy, I'm intending to add some material to the Sarcomatoid thread but meanwhile I must add my good vibes and express delight at the clear result of your brain scan.

    We must be at the extreme end of the sarcomatoid spectrum - not cheering but there is light at the end of the tunnel! Do you know what your original cell type was? Mine is/was chromophobe which has a slightly better prognosis than clear cell until we go sarcomatoid when all bets are off and we enter an even more mysterious domain than the rest of the bewildering world of RCC.

    I'm glad to hear you're optimising your diet which is a very good move.
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    #18
    NanaLou said:

    Brain scan was clear
    The brain scan was clear. I started Sutent on January 30th. So I have been on it for 2 1/2 weeks now. So far so good. Only side affects so far are taste change and acid reflex has worsened. I am getting red spots on me, but I have always had sensitive skin. I am still working and for the most part don't even know I have Cancer. When I had my surgery in November the Dr. thought he had gotten it all. My scan in January showed several lymph node in the area where the kidney was removed. My path report from surgery says it is 95% sarcomatoid. Which is highly aggressive. I had blood work done on Monday the 13th. It is looking better so maybe it is working. I go back next month for more blood work and then will have a scan sometime in April. I have been trying to eat a better diet. More fruit and veggies and less junk. I say a prayer everynight when I take my pills. So I feel like I am doing all I can do. Thank you all for your prayers. I wish you all great health!!

    Nancy

    Sutent, diet, histology
    Nancy, I'm intending to add some material to the Sarcomatoid thread but meanwhile I must add my good vibes for you and express delight at the clear result of your brain scan.

    You and I must be at the extreme end of the sarcomatoid spectrum - not cheering but there is light at the end of the tunnel! Do you know what your original cell type was? Mine is/was chromophobe which has a slightly better prognosis than clear cell until we go sarcomatoid when all bets are off and we enter an even more mysterious domain than the rest of the bewildering world of RCC.

    I'm glad to hear you're optimising your diet which is a very good move. I'm unclear (chromophobe!!) about the indications for Sutent treatment. I imagined it was only for clear cell patients, but maybe you are basically clear cell before turning sarcomatoid? Is that corect, or are they uncertain?
  • NanaLou
    NanaLou Member Posts: 71
    #19
    Texas_wedge said:

    Sutent, diet, histology
    Nancy, I'm intending to add some material to the Sarcomatoid thread but meanwhile I must add my good vibes for you and express delight at the clear result of your brain scan.

    You and I must be at the extreme end of the sarcomatoid spectrum - not cheering but there is light at the end of the tunnel! Do you know what your original cell type was? Mine is/was chromophobe which has a slightly better prognosis than clear cell until we go sarcomatoid when all bets are off and we enter an even more mysterious domain than the rest of the bewildering world of RCC.

    I'm glad to hear you're optimising your diet which is a very good move. I'm unclear (chromophobe!!) about the indications for Sutent treatment. I imagined it was only for clear cell patients, but maybe you are basically clear cell before turning sarcomatoid? Is that corect, or are they uncertain?

    clear cell
    This is what it says on my path "The majority of the primary renal cell carcinoma and the metastases have rhabdoid features, although focally the primary carcinoma has coventional clear cell features."

    Tex- Are you on any treatment?
    I was doing pretty good with the treatment. But, this has been a rough weekend. Really bad headache,maybe a migraine, not sure never had one before. No appetite nothing taste right. Scalp very tender and sore. I have one more week then I get a two week break from the sutent. Then back to it. Can't wait for the break!
  • newenglandguy
    newenglandguy Member Posts: 66
    #20
    NanaLou said:

    clear cell
    This is what it says on my path "The majority of the primary renal cell carcinoma and the metastases have rhabdoid features, although focally the primary carcinoma has coventional clear cell features."

    Tex- Are you on any treatment?
    I was doing pretty good with the treatment. But, this has been a rough weekend. Really bad headache,maybe a migraine, not sure never had one before. No appetite nothing taste right. Scalp very tender and sore. I have one more week then I get a two week break from the sutent. Then back to it. Can't wait for the break!

    Nanalou - wishing you the best
    Nanalou - wishing you the best on your path with Sutent. Sounds like you've been having a few of the common symptoms, so please let us know when you hiy the break, how the last week went. Hoping the headaches disappear and your sore scalp symptoms fade.
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    #21
    newenglandguy said:

    Nanalou - wishing you the best
    Nanalou - wishing you the best on your path with Sutent. Sounds like you've been having a few of the common symptoms, so please let us know when you hiy the break, how the last week went. Hoping the headaches disappear and your sore scalp symptoms fade.

    Sutent etc
    Nancy,

    First of all, do take a look at what Jam66 (Jennifer) says about her experience on Sutent on the "Stage 4 metastatic ... " thread. It's very encouraging.
    Then, when you can find time, listen to the recorded workshops by Cancer Care that I mentioned (and gave a link to) on the thread on the subject - a good entry point would be

    http://www.cancercare.org/connect_workshops/4-cancer_coping_2011-06-01

    Tweaking the dosage parameters in the administration of the new targeted therapies seems to be an important part of the work of the experts - to get the best possible combination of benefits and minimal side-effects.

    My first follow-up CT scan is on 29th and I suppose it will be a little while before we get and review the results. After that, who knows? At this point I'm not on anything and it will be strange if/when I am. Prior to my diagnostic scan it was:- never really been ill, no allergies, not on any form of medication. Meantime my self-prescription is as follows: each week 4 rounds of golf, one or two (soon more I hope) sessions on a cross-trainer, several upper-body weight-lifting workouts, 3/4 rowing sessions of 5,000m or 10,000m. As the temperature rises and the winds ease, I'll aim to fit in some LSD (long, slow distance) running. Coupled with this, 2 daily TM sessions and Jerry White's MAARS program. Also, attention to diet (always been good) and attempt to sleep more than six hours a night.

    On the diet front, I have a Vitamix I bought an hour ago still in its box under my feet as I type and my Wife and I will be looking to folks here for advice, tips and recipes to get the best out of it!

    Your path report, along with mine, indicates that we are in an expanding rcc universe in which our sort of cases seem to be getting further away from all others. RCC is one of the less common cancers and we're a bit unlucky, maybe, that we have rarer versions of RCC about which less is known. Yours is clear cell but now with rhabdoid components - pretty unusual and I'm in the much less frequent still chromophobe, now mostly sarcomatoid, category. My Wife and I have only one offspring, our Daughter, who is trying to cope with the illness of several close relatives (while herself bi-polar and having previously had ME (PVFS) for quite a few years). She has the gallows humour of both her parents and accordingly offered me the consoling thought - if your condition becomes any rarer, maybe they'll have to name it after you!!

    I believe adult rhabdoid features and sarcomatoid change have been put in the same rag-bag of rare and not much understood variants of RCC. However, the intense research efforts going on are producing findings such as this:

    "Adult rhabdoid renal cell carcinoma can in some cases arise from conventional (clear cell) renal carcinoma and should be considered a clinically important form of renal cell carcinoma separate from, but analogous to, sarcomatoid change." (The conclusion in a paper the abstract of which is at http://www.ncbi.nlm.nih.gov/pubmed/12456212 )

    As against pediatric rhabdoid RCC, it does seem as if sorafenib (Nexavar) is another possible useful treatment.

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