Any way to determine how long primary tumor has been around?

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Comments

  • alice124
    alice124 Member Posts: 896

    age of primary tumour
    Yes, Raj, that's the way to go about it and that's how the conclusion has been arrived at that, on average, tumours grow at 1/3 to 1/2 cm. p.a. but with a fairly wide variation.

    It's interesting to see that Jon's apparently grew 0.3 cm. in 11 months - bang on the average.

    4 hours ago I was told by a consultant that I might have had my tumour for 30 years - he volunteered that information during a consultation. He also confirmed that rate of tumour growth has nothing at all to do with cell size. Grade 3 and 4 tumours could be expected to grow faster, particularly when sarcomatoid, but that has no connection whatever with cell size.

    age of primary tumor
    Appreciste all your info on this topic and even taking it to consultation with you. Sometimes it seems the more we ask about this awful stuff, the more magnification of how many dangling questions are out there.


    How did consultation go? Any decisions on next step???
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    alice124 said:

    age of primary tumor
    Appreciste all your info on this topic and even taking it to consultation with you. Sometimes it seems the more we ask about this awful stuff, the more magnification of how many dangling questions are out there.


    How did consultation go? Any decisions on next step???

    Next step
    How funny you should say that Alice. My Wife went with me and we both asked a few (!) questions. She comes from a family with physicians and gynaes, an uncle who taught neurosurgery etc. and she herself taught medical students for 20 years in the very hospital we were in. The consultant appreciated that we both had a bit of relevant knowledge and at one point said there comes a point where you need to rely on trust in your specialists - you can reach a point, he said, where a complete answer would need a year of medical study to understand it fully. He discussed my situation with us at breakneck speed for an hour and a half so we covered quite a lot of ground!

    Outcome - I'm scheduled to go back in for another big carve up on 30th of this month unless a space becomes free sooner. Op. will take at least 2 or 3 hours so a biggish slot would be necessary for that. No systemic therapy indicated at this stage. If lucky, removal of the presumed residuum will suffice and I am on the most aggressive surveillance possible with CTs expected at 3-monthly intervals for the foreseeable future (at nearly 70, considerations of radiation exposure are different than for young whippersnappers like Raj and the prognosis is dismal enough to mean that this course of action is a no-brainer to ensure fast follow-up of any subsequent nasties).

    If we encounter more mets, surgery will cease to be a sensible option and sunitinib may be next so I can compare notes on Sutent side-effects with other friends here.

    I've been fielding calls from pals on this side of the Atlantic and just told a golfing journalist friend (a 3 year RCC survivor, incidentally) that I will soon be unique among golfers on these threads in having played a starring role in 2 major opens. Eat your hearts out Gary, Fox, Wayne .... !!!

    As I've said before, you have to retain a sense of Tumour.
  • One Lucky Girl
    One Lucky Girl Member Posts: 68

    Next step
    How funny you should say that Alice. My Wife went with me and we both asked a few (!) questions. She comes from a family with physicians and gynaes, an uncle who taught neurosurgery etc. and she herself taught medical students for 20 years in the very hospital we were in. The consultant appreciated that we both had a bit of relevant knowledge and at one point said there comes a point where you need to rely on trust in your specialists - you can reach a point, he said, where a complete answer would need a year of medical study to understand it fully. He discussed my situation with us at breakneck speed for an hour and a half so we covered quite a lot of ground!

    Outcome - I'm scheduled to go back in for another big carve up on 30th of this month unless a space becomes free sooner. Op. will take at least 2 or 3 hours so a biggish slot would be necessary for that. No systemic therapy indicated at this stage. If lucky, removal of the presumed residuum will suffice and I am on the most aggressive surveillance possible with CTs expected at 3-monthly intervals for the foreseeable future (at nearly 70, considerations of radiation exposure are different than for young whippersnappers like Raj and the prognosis is dismal enough to mean that this course of action is a no-brainer to ensure fast follow-up of any subsequent nasties).

    If we encounter more mets, surgery will cease to be a sensible option and sunitinib may be next so I can compare notes on Sutent side-effects with other friends here.

    I've been fielding calls from pals on this side of the Atlantic and just told a golfing journalist friend (a 3 year RCC survivor, incidentally) that I will soon be unique among golfers on these threads in having played a starring role in 2 major opens. Eat your hearts out Gary, Fox, Wayne .... !!!

    As I've said before, you have to retain a sense of Tumour.

    So sorry
    Hi Tex,

    I'm really sorry to hear about your upcoming surgery. I hope this will be the definitive one and that no other nasty mets will ever rear their ugly heads again.
  • alice124
    alice124 Member Posts: 896

    Next step
    How funny you should say that Alice. My Wife went with me and we both asked a few (!) questions. She comes from a family with physicians and gynaes, an uncle who taught neurosurgery etc. and she herself taught medical students for 20 years in the very hospital we were in. The consultant appreciated that we both had a bit of relevant knowledge and at one point said there comes a point where you need to rely on trust in your specialists - you can reach a point, he said, where a complete answer would need a year of medical study to understand it fully. He discussed my situation with us at breakneck speed for an hour and a half so we covered quite a lot of ground!

    Outcome - I'm scheduled to go back in for another big carve up on 30th of this month unless a space becomes free sooner. Op. will take at least 2 or 3 hours so a biggish slot would be necessary for that. No systemic therapy indicated at this stage. If lucky, removal of the presumed residuum will suffice and I am on the most aggressive surveillance possible with CTs expected at 3-monthly intervals for the foreseeable future (at nearly 70, considerations of radiation exposure are different than for young whippersnappers like Raj and the prognosis is dismal enough to mean that this course of action is a no-brainer to ensure fast follow-up of any subsequent nasties).

    If we encounter more mets, surgery will cease to be a sensible option and sunitinib may be next so I can compare notes on Sutent side-effects with other friends here.

    I've been fielding calls from pals on this side of the Atlantic and just told a golfing journalist friend (a 3 year RCC survivor, incidentally) that I will soon be unique among golfers on these threads in having played a starring role in 2 major opens. Eat your hearts out Gary, Fox, Wayne .... !!!

    As I've said before, you have to retain a sense of Tumour.

    tumor humor
    Wow – tumor humor, a personal fav. . .

    Kidding aside, know my thoughts and prayers are with you. With all you give in the way of time, expertise, diplomacy, empathy, and, yes, humor, I'd like to say sommething more eloquent but am at a loss at the moment. Just know the sentiments are sincere.

    2-3 hours - not even a round of golf. . .
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    alice124 said:

    tumor humor
    Wow – tumor humor, a personal fav. . .

    Kidding aside, know my thoughts and prayers are with you. With all you give in the way of time, expertise, diplomacy, empathy, and, yes, humor, I'd like to say sommething more eloquent but am at a loss at the moment. Just know the sentiments are sincere.

    2-3 hours - not even a round of golf. . .

    All my life
    and now I'm surrounded by gorgeous film stars - wouldn't you just know it!!
  • foxhd
    foxhd Member Posts: 3,181

    All my life
    and now I'm surrounded by gorgeous film stars - wouldn't you just know it!!

    New surgery
    Hey T-W, I'll take the high road and say I'm glad to hear you are the chosen turkey up for another carving. Get rid of those nasty giblets. So what if it slows you down for a couple weeks. Carnoustie needs to reseed your divots anyway. I'm happy that surgery is an available option. And that you made that decision. Hopefully others here will learn how to move forward like you. Looking forward to the goal. Not the obstacles.
    your good friend ,
    Fox.
  • foxhd
    foxhd Member Posts: 3,181
    foxhd said:

    New surgery
    Hey T-W, I'll take the high road and say I'm glad to hear you are the chosen turkey up for another carving. Get rid of those nasty giblets. So what if it slows you down for a couple weeks. Carnoustie needs to reseed your divots anyway. I'm happy that surgery is an available option. And that you made that decision. Hopefully others here will learn how to move forward like you. Looking forward to the goal. Not the obstacles.
    your good friend ,
    Fox.

    film stars
    I'm so flattered to still be considered a gorgeous film star...you couldn't be referring to the young ladies. That just wouldn't be right.
  • Olsera
    Olsera Member Posts: 38

    Next step
    How funny you should say that Alice. My Wife went with me and we both asked a few (!) questions. She comes from a family with physicians and gynaes, an uncle who taught neurosurgery etc. and she herself taught medical students for 20 years in the very hospital we were in. The consultant appreciated that we both had a bit of relevant knowledge and at one point said there comes a point where you need to rely on trust in your specialists - you can reach a point, he said, where a complete answer would need a year of medical study to understand it fully. He discussed my situation with us at breakneck speed for an hour and a half so we covered quite a lot of ground!

    Outcome - I'm scheduled to go back in for another big carve up on 30th of this month unless a space becomes free sooner. Op. will take at least 2 or 3 hours so a biggish slot would be necessary for that. No systemic therapy indicated at this stage. If lucky, removal of the presumed residuum will suffice and I am on the most aggressive surveillance possible with CTs expected at 3-monthly intervals for the foreseeable future (at nearly 70, considerations of radiation exposure are different than for young whippersnappers like Raj and the prognosis is dismal enough to mean that this course of action is a no-brainer to ensure fast follow-up of any subsequent nasties).

    If we encounter more mets, surgery will cease to be a sensible option and sunitinib may be next so I can compare notes on Sutent side-effects with other friends here.

    I've been fielding calls from pals on this side of the Atlantic and just told a golfing journalist friend (a 3 year RCC survivor, incidentally) that I will soon be unique among golfers on these threads in having played a starring role in 2 major opens. Eat your hearts out Gary, Fox, Wayne .... !!!

    As I've said before, you have to retain a sense of Tumour.

    Next step
    Texas,
    I am sorry you have to endure another surgery so soon I will be thinking about you.
  • garym
    garym Member Posts: 1,647
    Olsera said:

    Next step
    Texas,
    I am sorry you have to endure another surgery so soon I will be thinking about you.

    The "open"...
    Tex Tex Tex,

    While a second "open" will change your amateur status you won't be considered a seasoned pro until you play the cOuRse at least 6 times like me and that excludes several minor pro-am rounds. Seriously, as long as surgery remains an option, go for it, recovering from it has to beat the side effects of the drugs and who knows, maybe they'll get the last of it this time. We're all pulling for you to win this major in a walk.
  • djc2
    djc2 Member Posts: 17

    Next step
    How funny you should say that Alice. My Wife went with me and we both asked a few (!) questions. She comes from a family with physicians and gynaes, an uncle who taught neurosurgery etc. and she herself taught medical students for 20 years in the very hospital we were in. The consultant appreciated that we both had a bit of relevant knowledge and at one point said there comes a point where you need to rely on trust in your specialists - you can reach a point, he said, where a complete answer would need a year of medical study to understand it fully. He discussed my situation with us at breakneck speed for an hour and a half so we covered quite a lot of ground!

    Outcome - I'm scheduled to go back in for another big carve up on 30th of this month unless a space becomes free sooner. Op. will take at least 2 or 3 hours so a biggish slot would be necessary for that. No systemic therapy indicated at this stage. If lucky, removal of the presumed residuum will suffice and I am on the most aggressive surveillance possible with CTs expected at 3-monthly intervals for the foreseeable future (at nearly 70, considerations of radiation exposure are different than for young whippersnappers like Raj and the prognosis is dismal enough to mean that this course of action is a no-brainer to ensure fast follow-up of any subsequent nasties).

    If we encounter more mets, surgery will cease to be a sensible option and sunitinib may be next so I can compare notes on Sutent side-effects with other friends here.

    I've been fielding calls from pals on this side of the Atlantic and just told a golfing journalist friend (a 3 year RCC survivor, incidentally) that I will soon be unique among golfers on these threads in having played a starring role in 2 major opens. Eat your hearts out Gary, Fox, Wayne .... !!!

    As I've said before, you have to retain a sense of Tumour.

    another open
    Tex, Good luck with your next round. It sounds like a good sign that surgery is an option; that maybe this time around you will get this thing out of your system. Like many others here, I am pulling for you.
  • alice124
    alice124 Member Posts: 896
    foxhd said:

    film stars
    I'm so flattered to still be considered a gorgeous film star...you couldn't be referring to the young ladies. That just wouldn't be right.

    star - YES!
    Fox - Of course Tex was referring to you--how could he not? (Just look at that sweet face!)

    In my world, you, Tex, Mike, Lisa, livealive, iceman, rae-rae, Gary, and all of the other too-many-to-mention contributors on this Board are gorgeous STARS and Superheroes.

    I joined this group trying to help John, and I think some of the information I've gleaned and shared with him has helped him. But it's also helped me. I can breathe again and I think I'm ready to walk into the Dr.'s office with John tomorrow and face/accept the news--whatever it is--knowing there are options out there and recognizing the strength of all of you. Thank you.
  • garym
    garym Member Posts: 1,647
    alice124 said:

    star - YES!
    Fox - Of course Tex was referring to you--how could he not? (Just look at that sweet face!)

    In my world, you, Tex, Mike, Lisa, livealive, iceman, rae-rae, Gary, and all of the other too-many-to-mention contributors on this Board are gorgeous STARS and Superheroes.

    I joined this group trying to help John, and I think some of the information I've gleaned and shared with him has helped him. But it's also helped me. I can breathe again and I think I'm ready to walk into the Dr.'s office with John tomorrow and face/accept the news--whatever it is--knowing there are options out there and recognizing the strength of all of you. Thank you.

    We get more than we give...
    Alice,

    I appreciate the kind words, I can tell you for sure that I have received much more than I've given here and it has been an unexpected gift. I believe all things work together for good and belonging here has helped offset the bad of RCC.

    Good luck at the Dr. tomorrow,

    Gary
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    djc2 said:

    another open
    Tex, Good luck with your next round. It sounds like a good sign that surgery is an option; that maybe this time around you will get this thing out of your system. Like many others here, I am pulling for you.

    Forthcoming 'open'
    Thanks one and all. Last time the pain control was a problem but at least we found morphine was fine for me. I hope the same is true again. If not, I suppose something like fentanyl may be required. At least I'll know to ensure that I check that when the bed is changed they lower it again - in December it was only after several days that I realised I shouldn't have needed to jump down to the floor when getting out of bed!
  • foxhd
    foxhd Member Posts: 3,181

    Forthcoming 'open'
    Thanks one and all. Last time the pain control was a problem but at least we found morphine was fine for me. I hope the same is true again. If not, I suppose something like fentanyl may be required. At least I'll know to ensure that I check that when the bed is changed they lower it again - in December it was only after several days that I realised I shouldn't have needed to jump down to the floor when getting out of bed!

    open
    I had told my surgeon that I was having problems with my slice. I asked him if he could just tighten up my left side after nephrectomy to help encourage a fade. Stress from cancer? Hell no. I was making jokes rolling into the OR.
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    foxhd said:

    open
    I had told my surgeon that I was having problems with my slice. I asked him if he could just tighten up my left side after nephrectomy to help encourage a fade. Stress from cancer? Hell no. I was making jokes rolling into the OR.

    open
    and while being rolled back out of the OR as well I bet.

    Had a good round at Carnoustie yesterday - do you think shedding my right kidney may have brought my hook under control? I hope your surgeon is a good enough golfer to have made the necessary alterations for you.

    Surprisingly (in view of an embarrassing freak DIY mishap yesterday, in which I fell in my kitchen and had a (formerly) built-in oven fall on top of me - being a pyrolytic it had a triple-glazed glass door, so rather heavy) I took more than 30 secs. off my post-op best 10,000m. rowing time this afternoon. I just hope that doesn't spoil tomorrow's golf but it felt really good.

    This may be a very naive question but do you have any clue as to how anyone else on your MDX trial is doing on it. Wouldn't it be superb if others are doing as well as you are?
  • livealive
    livealive Member Posts: 127

    open
    and while being rolled back out of the OR as well I bet.

    Had a good round at Carnoustie yesterday - do you think shedding my right kidney may have brought my hook under control? I hope your surgeon is a good enough golfer to have made the necessary alterations for you.

    Surprisingly (in view of an embarrassing freak DIY mishap yesterday, in which I fell in my kitchen and had a (formerly) built-in oven fall on top of me - being a pyrolytic it had a triple-glazed glass door, so rather heavy) I took more than 30 secs. off my post-op best 10,000m. rowing time this afternoon. I just hope that doesn't spoil tomorrow's golf but it felt really good.

    This may be a very naive question but do you have any clue as to how anyone else on your MDX trial is doing on it. Wouldn't it be superb if others are doing as well as you are?

    MDX and Fox
    So if the others are not doing too well - I want to know what Fox is doing which seems to work.
    If the others are doing well, then the MDX is working.
    I bet we won't get that answer for a while.
    Fox, what are the side effects of this drug that you are experiencing ? If you don't mind my asking. Does it work the same way as Pazopanib ?
  • foxhd
    foxhd Member Posts: 3,181
    livealive said:

    MDX and Fox
    So if the others are not doing too well - I want to know what Fox is doing which seems to work.
    If the others are doing well, then the MDX is working.
    I bet we won't get that answer for a while.
    Fox, what are the side effects of this drug that you are experiencing ? If you don't mind my asking. Does it work the same way as Pazopanib ?

    others response.
    So far, there are less than 10 on the trial at Yale I believe. I was told one person had developed mouth sores and some foot/hand syndrome with inflammation and skin peeling. Raj, you're right about not getting any up to date answers for a while. Nothing current is on the net. I have been told that they have seen patients who completed phase 1 trial continue to have reduction in tumors 18 months later. The immune system remained very active.( I'm in phase 1B). Potential side effects may be fairly typical. Fatigue, weakness, rash, dry skin,itchiness,diarrhea, protein in urine,decreased white blood cell count,dry mouth,fever, chills, thyroid changes, shortness of breath,joint or muscle pain hair loss. In general people have tolerated this drug very well. This drug also called anti-PD1 works by blocking the normal die off of T-cells which fight viral, bacterial infections and cancer. The T-cells then become aggressive against the cancer. The drug needs to be reinfused every 3 weeks.