Fuhrman Grade IS VERY IMPORTANT - even for small tumors
Comments
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garygarym said:Another thing in common...
I live on a lake as well, not uncommon in Michigan, but just one more similarity.
You are more fortunate than I am, Gary, as I have to drive ab0ut an hour to get to the lake I love, but it is well worth it!!0 -
Small and aggressivedjc2 said:small and agressive
Dear Alice, Tex and others,
No one has explained my unusual presentation of such a small, yet agressively evolved tumor. Even for the clear cell subtype, even my surgeon, who is very experienced (many hundreds if not into the thousands of surgeries and chief of urology at Massachusetts General Hospital) has not seen it before. I searched for other examples and studies which contained conditions like mine, but could not find any this extreme. Consequently I have very little precedent by which to divine my future. I'm sure you can see why the debate about how significant grade is relative to stage and other factors is very interesting to me...But cancer makes us all aware of our uncertain futures, and I believe each of us has a unique manifestation and response to this disease. That is why reading your stories inspires me....one disease broken like light coming through the trees into so many faces...so many possibilities... When I think of my condition I try to focus on what I do know and can do. I'm still here. The Sun is out today. So far so good. I hope I can tell you for years to come that it is possible to have had an extremely agressive cancer and live a full long life. Best, Dean
Even though you had a pygmy shrew of a tumour (small but very aggressive) your outlook is surely very good? Stage trumps grade every time. {Must have a think about the ramifications of my musing about the aetiology of primaries and 'recurrences' though, in this context.)
You must be well on the way to featuring in the text books Dean. They'll want you to write the accompanying text too, given your ability to provide information and be poetic in the same breath - I loved the concept of our fragmentary understanding of RCC as "broken like light coming through the trees"! You've certainly come through with convincing evidence of how rare your situation is. On the other hand, as you said, no two cases seem to be completely alike in this mysterious domain.0 -
According to my oncologist, the radiation oncologist, and pathologist, as well as of what I've read - I've had 'recurrance' / metastasis from the primary tumor. All CT's were normal until the lung nodules appeared nearly 5 years after initial nephrectomy. This was surgically managed with removal of the right lower lobe of the lung but put me in Stage 4. The second recurrnace (current) occured again at about the 5 year mark, again defined as coming from the original tumor, this time to the pancreas.Texas_wedge said:Vigilance
Liz, I endorse what you say about no bankable statements being possible with 'the sneaky disease'.
Your experience, along with those of many others, makes me wonder whether you truly had a 'recurrence' or whether it was actually a new primary, arising from circulating tumour cells that didn't derive from the original tumour. Perhaps some of us have systems where the radar is down at a critical time, allowing a tumour to develop and this can happen again, years later, without any connection with the first tumour.
After all, with your first occurrence it happened spontaneously - no-one suggested it must have come from an undetected previous tumour (if they did, we'd be into an 'infinite' regress) so, logically, why assume that the second occurrence is directly related to the first? I would welcome any comments board members care to make on this bit of speculation!
I take the opportunity to join Gary in enquiring how you're getting on and to sincerely hope the answer is a cheering one.
Gary, TW - thanks for asking how I'm getting along. After stereotactic radiosurgery failed to produce any results, in fact, new tumor discovered in the liver, I moved on to Sutent. Managed 2.5 weeks on that before I found myself 'end up' - or down which is a better description - flat on my face on the floor. NOT my finest moment, let me tell you! I had been feeling great up until I started Sutent and on it I was sick beyond belief. I decided that quality of life meant more to me than quantity. I have now opted out of treatment, choosing LIFE instead - I've been traveling and playing and laughing and utterly enjoying every moment. My oncologist has stood with me in my decision and I do see him every 6 weeks. He loves my enthusiasm and has honored my decision. Except for some decrease in energy and some minor increase in pain, I'm doing fabulous! I intend to keep on playing and traveling and laughing and living life to the fullest - until I don't.
LizB0 -
Another thing in common...garym said:Another thing in common...
I live on a lake as well, not uncommon in Michigan, but just one more similarity.
This time Gary, yours is certainly larger than mine!0 -
Lakesunlover_56 said:Lake
Yes Tex, The lake I love to go to is quite large. It is part of what they call the "Finger Lakes" in upstate NY. It is close to 50 miles long and at its widest, 2 miles. The Finger Lakes were formed many many years ago by glasiers. Lots of boating and BBQ'ing ect. Boating was one of my favorite things to do. Unfortunately we sold the boat when we got divorced. I will have another one someday though. Your home sounds absolutely gorgous. Flowers,fairways and a biig pond.. what more could one ask for, huh. I am kind of partial to .. errrrr.. dare I say.. England. Only because I have been there before. lol
Wow, now that's a serious drop of water (even if smaller than Gary's!). I believe upstate New York is a vast, incredibly beautiful, unspoilt wilderness - is that a fair description? It sounds like a perfect place in which to heal the soul. I've always loved 'messing about on the river' in racing eights, or a kayak, or just drifting along an English canal on a narrow boat or on a Scottish loch in a dinghy. Easier, there, to keep a sense of proportion about life's little trials and tribulations.0 -
Treatment for life and treatment v lifelbinmsp said:According to my oncologist, the radiation oncologist, and pathologist, as well as of what I've read - I've had 'recurrance' / metastasis from the primary tumor. All CT's were normal until the lung nodules appeared nearly 5 years after initial nephrectomy. This was surgically managed with removal of the right lower lobe of the lung but put me in Stage 4. The second recurrnace (current) occured again at about the 5 year mark, again defined as coming from the original tumor, this time to the pancreas.
Gary, TW - thanks for asking how I'm getting along. After stereotactic radiosurgery failed to produce any results, in fact, new tumor discovered in the liver, I moved on to Sutent. Managed 2.5 weeks on that before I found myself 'end up' - or down which is a better description - flat on my face on the floor. NOT my finest moment, let me tell you! I had been feeling great up until I started Sutent and on it I was sick beyond belief. I decided that quality of life meant more to me than quantity. I have now opted out of treatment, choosing LIFE instead - I've been traveling and playing and laughing and utterly enjoying every moment. My oncologist has stood with me in my decision and I do see him every 6 weeks. He loves my enthusiasm and has honored my decision. Except for some decrease in energy and some minor increase in pain, I'm doing fabulous! I intend to keep on playing and traveling and laughing and living life to the fullest - until I don't.
LizB
I suspect there are quite a few cases where the decision you've made is the correct one and such are life's mysteries that you might actually do better by living a full life than you would have by taking more treatment. How splendid that your oncologist is prepared to support you in your chosen course of action.
By the way Liz, I'm wanting to challenge the logic of the received wisdom on the matter of recurrence. It seems to me that an assumption is being made which may not always be defensible (BWDIK).0 -
New primary vs recurranceTexas_wedge said:Treatment for life and treatment v life
I suspect there are quite a few cases where the decision you've made is the correct one and such are life's mysteries that you might actually do better by living a full life than you would have by taking more treatment. How splendid that your oncologist is prepared to support you in your chosen course of action.
By the way Liz, I'm wanting to challenge the logic of the received wisdom on the matter of recurrence. It seems to me that an assumption is being made which may not always be defensible (BWDIK).
TW - are you asking whether the lung and pancreatic tumors are definitely RCC rather than a new primary (as in Pancreatic cancer and not RCC) - if so, I had biopsies of both and both revealed RCC. There is a paper that I read many moons ago about recurrances - it is from 2006, I think so there may be/probably is updated info available. I kept the link -
http://jco.ascopubs.org/content/24/19/3101.long
More recently I recall the all day RCC seminar that was shown online - one of the doctors was suggesting treatment for any patient who had a Grade 2 tumor. Wish I could have been there to ask why - I don't recall that there was an explanation given for that statement.
If I misunderstood your question - it certainly wouldn't be the first time.
LizB0 -
New primary v recurrencelbinmsp said:New primary vs recurrance
TW - are you asking whether the lung and pancreatic tumors are definitely RCC rather than a new primary (as in Pancreatic cancer and not RCC) - if so, I had biopsies of both and both revealed RCC. There is a paper that I read many moons ago about recurrances - it is from 2006, I think so there may be/probably is updated info available. I kept the link -
http://jco.ascopubs.org/content/24/19/3101.long
More recently I recall the all day RCC seminar that was shown online - one of the doctors was suggesting treatment for any patient who had a Grade 2 tumor. Wish I could have been there to ask why - I don't recall that there was an explanation given for that statement.
If I misunderstood your question - it certainly wouldn't be the first time.
LizB
[Liz, thanks for the tip about my communication deficiencies - I'll try harder to express myself more clearly.]
So that I don't forget, was the seminar you referred to the YouTube broadcast one of a few weeks ago from MDA? I did a bit of a digest of key points for my own benefit so if you can remember the doc in question I'll try to home in on it and check out the context.
Thanks for the link to that paper which, I notice, was produced by some big guns. It is, as you noted, from 2006 and so effectively pre-dates the new wave of targeted treatments but it contains a lot of valuable descriptive data. I notice that the opening sentence of the Introduction section vindicates the remark I made about stage trumping grade, viz.
"The prognosis for patients with renal cell carcinoma (RCC) is primarily dependent on disease stage."
The research reported in the paper follows on logically from earlier work of Robert Motzer but I'm struck by how crude the design (probably inescapably) is and how much in this unbelievably complex field, which, as you put it so succinctly, is "still in the infant stage" is fairly much finger in the air stuff. Even the finest minds (and there seem, thankfully, to be quite a few engaged in RCC research) are well-stretched by the challenges here.
On the recurrence issue, you've asked a useful question for clarifying what I'm saying. No, I'm not suggesting that the presumed 'recurrences' are lung cancer and pancreatic cancer rather than RCC. I would actually have predicted that they would have been instances of RCC. Some unlucky folks seem to get a number of different cancers but most of us, I believe, (subject to correction if mistaken in this) get only one form. (There are further assumptions implicit here that I'll pass over now but may advance in another posting.) Therefore, I would expect that any recurrences would be of the same nature as the earlier one.
My argument runs like this: For some reason your system dropped its guard and allowed development of a particular form of cancer at a particular site, namely your kidney. When that was diagnosed I presume no-one asked whether that instance originated from another earlier tumour-? It was just accepted that something went wrong (locally???) and you developed kidney cancer.
Now, just as our bodies harbour trillions of totally alien organisms in the way of bacteria and viruses, so we have mutant cells (native to our bodies but misbehaving) circulating all the time in our bloodstreams. Normally, those alien, or those native, entities are kept under control by our immune systems. I'm supposing that unknown causes result in a particular individual being vulnerable to losing control of a particular type of mutant cell and hence developing that particular form of cancer. We do know that sometimes people manifest a form of cancer that is usually associated with a different organ - e.g. displaying RCC in their lungs, even though they have 'never had' and 'do not have' RCC. This is regarded as the mysterious phenomenon of a 'secondary' tumour occurring as a recurrence of 'an unknown/undetected primary'.
My hypothesis is that that is an unwarranted and unnecessary assumption. The origin could well be in CTCs (circulating tumour cells) that happen, for some unknown reason, to have found a permanent residence in the lungs rather than in the kidney. This occurrence would be rare simply because that particular type of mutant normally finds the kidney the most hospitable abode and consequently is labelled as "renal cell carcinoma". If this line of thinking is correct, it will be necessary to eliminate the covert assumption built into the phrase "circulating tumour cells" and instead have CTC as standing for 'circulating tumourigenic cells' - thus detaching the observation of the CTCs from the implicit assumption that that they originate from a prior tumour.
So, in your case, the argument would be that your original tumour was disposed of and you were cured. However, because you are prone to losing control of a particular type of mutant cell, years later the same sort of mutant might take up residence in another organ which for some reason (maybe sheer chance) proved more hospitable at that juncture. Thus you have the mutant which has been labelled "RCC" expressed in your lungs or pancreas. To hedge my bets, i can reserve my position and say possibly both accounts are true - in some instances the CTCs originate in an earlier tumour and in others they don't.
I feel that this speculation perhaps chimes with some of the thinking put out by one of the luminaries of this field, the cancer doc David Agus, who, around 3 years ago, made this video (which I find fascinating and will doubtless view more than the twice I have so far):-
http://www.ted.com/talks/david_agus_a_new_strategy_in_the_war_on_cancer.html
Some of his concluding thoughts bear very directly on your recent decision regarding treatment and may interest you.
These guys have incredibly busy lives and yet the best still often manage to suffer fools gladly so i might even try to put the above to someone like Agus to see whether I've followed the implications of his thinking, at least in part.0 -
LizTexas_wedge said:New primary v recurrence
[Liz, thanks for the tip about my communication deficiencies - I'll try harder to express myself more clearly.]
So that I don't forget, was the seminar you referred to the YouTube broadcast one of a few weeks ago from MDA? I did a bit of a digest of key points for my own benefit so if you can remember the doc in question I'll try to home in on it and check out the context.
Thanks for the link to that paper which, I notice, was produced by some big guns. It is, as you noted, from 2006 and so effectively pre-dates the new wave of targeted treatments but it contains a lot of valuable descriptive data. I notice that the opening sentence of the Introduction section vindicates the remark I made about stage trumping grade, viz.
"The prognosis for patients with renal cell carcinoma (RCC) is primarily dependent on disease stage."
The research reported in the paper follows on logically from earlier work of Robert Motzer but I'm struck by how crude the design (probably inescapably) is and how much in this unbelievably complex field, which, as you put it so succinctly, is "still in the infant stage" is fairly much finger in the air stuff. Even the finest minds (and there seem, thankfully, to be quite a few engaged in RCC research) are well-stretched by the challenges here.
On the recurrence issue, you've asked a useful question for clarifying what I'm saying. No, I'm not suggesting that the presumed 'recurrences' are lung cancer and pancreatic cancer rather than RCC. I would actually have predicted that they would have been instances of RCC. Some unlucky folks seem to get a number of different cancers but most of us, I believe, (subject to correction if mistaken in this) get only one form. (There are further assumptions implicit here that I'll pass over now but may advance in another posting.) Therefore, I would expect that any recurrences would be of the same nature as the earlier one.
My argument runs like this: For some reason your system dropped its guard and allowed development of a particular form of cancer at a particular site, namely your kidney. When that was diagnosed I presume no-one asked whether that instance originated from another earlier tumour-? It was just accepted that something went wrong (locally???) and you developed kidney cancer.
Now, just as our bodies harbour trillions of totally alien organisms in the way of bacteria and viruses, so we have mutant cells (native to our bodies but misbehaving) circulating all the time in our bloodstreams. Normally, those alien, or those native, entities are kept under control by our immune systems. I'm supposing that unknown causes result in a particular individual being vulnerable to losing control of a particular type of mutant cell and hence developing that particular form of cancer. We do know that sometimes people manifest a form of cancer that is usually associated with a different organ - e.g. displaying RCC in their lungs, even though they have 'never had' and 'do not have' RCC. This is regarded as the mysterious phenomenon of a 'secondary' tumour occurring as a recurrence of 'an unknown/undetected primary'.
My hypothesis is that that is an unwarranted and unnecessary assumption. The origin could well be in CTCs (circulating tumour cells) that happen, for some unknown reason, to have found a permanent residence in the lungs rather than in the kidney. This occurrence would be rare simply because that particular type of mutant normally finds the kidney the most hospitable abode and consequently is labelled as "renal cell carcinoma". If this line of thinking is correct, it will be necessary to eliminate the covert assumption built into the phrase "circulating tumour cells" and instead have CTC as standing for 'circulating tumourigenic cells' - thus detaching the observation of the CTCs from the implicit assumption that that they originate from a prior tumour.
So, in your case, the argument would be that your original tumour was disposed of and you were cured. However, because you are prone to losing control of a particular type of mutant cell, years later the same sort of mutant might take up residence in another organ which for some reason (maybe sheer chance) proved more hospitable at that juncture. Thus you have the mutant which has been labelled "RCC" expressed in your lungs or pancreas. To hedge my bets, i can reserve my position and say possibly both accounts are true - in some instances the CTCs originate in an earlier tumour and in others they don't.
I feel that this speculation perhaps chimes with some of the thinking put out by one of the luminaries of this field, the cancer doc David Agus, who, around 3 years ago, made this video (which I find fascinating and will doubtless view more than the twice I have so far):-
http://www.ted.com/talks/david_agus_a_new_strategy_in_the_war_on_cancer.html
Some of his concluding thoughts bear very directly on your recent decision regarding treatment and may interest you.
These guys have incredibly busy lives and yet the best still often manage to suffer fools gladly so i might even try to put the above to someone like Agus to see whether I've followed the implications of his thinking, at least in part.
God Bless you Liz. I like how you think.I hope to embrace your attitude. Fox.0 -
More laterTexas_wedge said:New primary v recurrence
[Liz, thanks for the tip about my communication deficiencies - I'll try harder to express myself more clearly.]
So that I don't forget, was the seminar you referred to the YouTube broadcast one of a few weeks ago from MDA? I did a bit of a digest of key points for my own benefit so if you can remember the doc in question I'll try to home in on it and check out the context.
Thanks for the link to that paper which, I notice, was produced by some big guns. It is, as you noted, from 2006 and so effectively pre-dates the new wave of targeted treatments but it contains a lot of valuable descriptive data. I notice that the opening sentence of the Introduction section vindicates the remark I made about stage trumping grade, viz.
"The prognosis for patients with renal cell carcinoma (RCC) is primarily dependent on disease stage."
The research reported in the paper follows on logically from earlier work of Robert Motzer but I'm struck by how crude the design (probably inescapably) is and how much in this unbelievably complex field, which, as you put it so succinctly, is "still in the infant stage" is fairly much finger in the air stuff. Even the finest minds (and there seem, thankfully, to be quite a few engaged in RCC research) are well-stretched by the challenges here.
On the recurrence issue, you've asked a useful question for clarifying what I'm saying. No, I'm not suggesting that the presumed 'recurrences' are lung cancer and pancreatic cancer rather than RCC. I would actually have predicted that they would have been instances of RCC. Some unlucky folks seem to get a number of different cancers but most of us, I believe, (subject to correction if mistaken in this) get only one form. (There are further assumptions implicit here that I'll pass over now but may advance in another posting.) Therefore, I would expect that any recurrences would be of the same nature as the earlier one.
My argument runs like this: For some reason your system dropped its guard and allowed development of a particular form of cancer at a particular site, namely your kidney. When that was diagnosed I presume no-one asked whether that instance originated from another earlier tumour-? It was just accepted that something went wrong (locally???) and you developed kidney cancer.
Now, just as our bodies harbour trillions of totally alien organisms in the way of bacteria and viruses, so we have mutant cells (native to our bodies but misbehaving) circulating all the time in our bloodstreams. Normally, those alien, or those native, entities are kept under control by our immune systems. I'm supposing that unknown causes result in a particular individual being vulnerable to losing control of a particular type of mutant cell and hence developing that particular form of cancer. We do know that sometimes people manifest a form of cancer that is usually associated with a different organ - e.g. displaying RCC in their lungs, even though they have 'never had' and 'do not have' RCC. This is regarded as the mysterious phenomenon of a 'secondary' tumour occurring as a recurrence of 'an unknown/undetected primary'.
My hypothesis is that that is an unwarranted and unnecessary assumption. The origin could well be in CTCs (circulating tumour cells) that happen, for some unknown reason, to have found a permanent residence in the lungs rather than in the kidney. This occurrence would be rare simply because that particular type of mutant normally finds the kidney the most hospitable abode and consequently is labelled as "renal cell carcinoma". If this line of thinking is correct, it will be necessary to eliminate the covert assumption built into the phrase "circulating tumour cells" and instead have CTC as standing for 'circulating tumourigenic cells' - thus detaching the observation of the CTCs from the implicit assumption that that they originate from a prior tumour.
So, in your case, the argument would be that your original tumour was disposed of and you were cured. However, because you are prone to losing control of a particular type of mutant cell, years later the same sort of mutant might take up residence in another organ which for some reason (maybe sheer chance) proved more hospitable at that juncture. Thus you have the mutant which has been labelled "RCC" expressed in your lungs or pancreas. To hedge my bets, i can reserve my position and say possibly both accounts are true - in some instances the CTCs originate in an earlier tumour and in others they don't.
I feel that this speculation perhaps chimes with some of the thinking put out by one of the luminaries of this field, the cancer doc David Agus, who, around 3 years ago, made this video (which I find fascinating and will doubtless view more than the twice I have so far):-
http://www.ted.com/talks/david_agus_a_new_strategy_in_the_war_on_cancer.html
Some of his concluding thoughts bear very directly on your recent decision regarding treatment and may interest you.
These guys have incredibly busy lives and yet the best still often manage to suffer fools gladly so i might even try to put the above to someone like Agus to see whether I've followed the implications of his thinking, at least in part.
I'm off to the airport for another little adventure so this will be short -
TW you goose! I wasn't saying your communication skills needed work - but MY understanding skills needed work! I've been retired for a while now and even though my background is medicine, I've allowed my brain to retire too!
When I return I will review the video you cited and will also provide the shortcut to that all-day seminar (actually, I believe I put the link in here somewhere).
The immune system is a very strange animal. I have always been extremely heathy (only getting a cold or flu about every 5 years) - so I always thought I could beat most anything. Now, I was a smoker - quit over 20 years ago so most probably that played a significant role in what is happening today.
OOPS - gotta run - my ride is here - off to Frankenmuth, Michigan for the Puppy Bowl! YIPPPEE!
Later my friends.
LizB0 -
YO Foxfoxhd said:Liz
God Bless you Liz. I like how you think.I hope to embrace your attitude. Fox.
Thank you for your kind words. You seem to do very well in attitude yourself! I've only cried a couple of times in the past 11+ years over this thing. Both were total melt-downs and lasted about 24 hours each (whew). WHAT a waste of good energy! But now it's onward and upward. Lots of play time left - lots of little adventures to be had.
LizB0 -
Sutentlbinmsp said:According to my oncologist, the radiation oncologist, and pathologist, as well as of what I've read - I've had 'recurrance' / metastasis from the primary tumor. All CT's were normal until the lung nodules appeared nearly 5 years after initial nephrectomy. This was surgically managed with removal of the right lower lobe of the lung but put me in Stage 4. The second recurrnace (current) occured again at about the 5 year mark, again defined as coming from the original tumor, this time to the pancreas.
Gary, TW - thanks for asking how I'm getting along. After stereotactic radiosurgery failed to produce any results, in fact, new tumor discovered in the liver, I moved on to Sutent. Managed 2.5 weeks on that before I found myself 'end up' - or down which is a better description - flat on my face on the floor. NOT my finest moment, let me tell you! I had been feeling great up until I started Sutent and on it I was sick beyond belief. I decided that quality of life meant more to me than quantity. I have now opted out of treatment, choosing LIFE instead - I've been traveling and playing and laughing and utterly enjoying every moment. My oncologist has stood with me in my decision and I do see him every 6 weeks. He loves my enthusiasm and has honored my decision. Except for some decrease in energy and some minor increase in pain, I'm doing fabulous! I intend to keep on playing and traveling and laughing and living life to the fullest - until I don't.
LizB
Liz
You say you were on sutent for 2 1/2 weeks and were extremely sick. How many days did it take to feel bad? Been on it for 6 days and so far no side effects.I love your attitude and I hope I can have the same if and when that time comes.
Jeff0 -
You are my mentorlbinmsp said:More later
I'm off to the airport for another little adventure so this will be short -
TW you goose! I wasn't saying your communication skills needed work - but MY understanding skills needed work! I've been retired for a while now and even though my background is medicine, I've allowed my brain to retire too!
When I return I will review the video you cited and will also provide the shortcut to that all-day seminar (actually, I believe I put the link in here somewhere).
The immune system is a very strange animal. I have always been extremely heathy (only getting a cold or flu about every 5 years) - so I always thought I could beat most anything. Now, I was a smoker - quit over 20 years ago so most probably that played a significant role in what is happening today.
OOPS - gotta run - my ride is here - off to Frankenmuth, Michigan for the Puppy Bowl! YIPPPEE!
Later my friends.
LizB
Liz, you’ve been shown me how to live through RCC with dignity. I would like to assume the Happy Dog picture borrowed from you to carry on the baton. A happy dog is a healthy dog, always. (Please let me know if you think otherwise)
Jon from the other side the Earth0 -
You amaze me!!!lbinmsp said:According to my oncologist, the radiation oncologist, and pathologist, as well as of what I've read - I've had 'recurrance' / metastasis from the primary tumor. All CT's were normal until the lung nodules appeared nearly 5 years after initial nephrectomy. This was surgically managed with removal of the right lower lobe of the lung but put me in Stage 4. The second recurrnace (current) occured again at about the 5 year mark, again defined as coming from the original tumor, this time to the pancreas.
Gary, TW - thanks for asking how I'm getting along. After stereotactic radiosurgery failed to produce any results, in fact, new tumor discovered in the liver, I moved on to Sutent. Managed 2.5 weeks on that before I found myself 'end up' - or down which is a better description - flat on my face on the floor. NOT my finest moment, let me tell you! I had been feeling great up until I started Sutent and on it I was sick beyond belief. I decided that quality of life meant more to me than quantity. I have now opted out of treatment, choosing LIFE instead - I've been traveling and playing and laughing and utterly enjoying every moment. My oncologist has stood with me in my decision and I do see him every 6 weeks. He loves my enthusiasm and has honored my decision. Except for some decrease in energy and some minor increase in pain, I'm doing fabulous! I intend to keep on playing and traveling and laughing and living life to the fullest - until I don't.
LizB
Dear Liz,
You have "lived" with RCC longer than anyone I have known and your story helped me greatly at a time when I needed it most. I know that you have weighed all options and reached the decision that is right for you and I can tell from the tone of your post that you are at peace, once again raising the spirits of those that care for you. To me you epitomize courage, conviction and attitude, should I ever need to make a similar decision I will think of you, of that I am certain. I look forward to future updates on your living, laughing, and travels, and who knows, maybe being at peace is what your immune system needs in order to fully engage.
Rock on,
Gary0 -
SutentJeff2159 said:Sutent
Liz
You say you were on sutent for 2 1/2 weeks and were extremely sick. How many days did it take to feel bad? Been on it for 6 days and so far no side effects.I love your attitude and I hope I can have the same if and when that time comes.
Jeff
Hi Jeff - first, let me say how happy I am that you are 'side effect free' at this point. That is GREAT news!
I experienced side effects about day 3 - BP started rising, mouth sores appeared, and fatigue hit like a ton of bricks. By day 7 the mouth sores were debilitating (couldn't eat or drink) and the fatigue and weakness were increasing. Suddenly around day 9 my BP started dropping - significantly. I called the drug company hotline and they had no documentated side effect of HYPO-tension (low BP). I called my oncologist - got a prescription for Magic Mouthwash which really helped the mouth sores but they were not yet concerned about the BP issue. By day 12 I was so light-headed and dizzy that showering proved to be dangerous as I feared I would pass out and fall. I kept on for a few more days until one morning when I got out of bed I collapsed / blacked out and found myself face down on the floor. It was actually quite comfie there! When I got up and tried to take my BP I couldn't get a reading at all which did scare me a little. About an hour later it finally registered at around 90/50 (extremely low for me). Called the oncologist office again and was told to stop taking it. It took about 3-4 days for my BP to normalize and about 10 days before my energy level returned. Mouth sores finally went away after 2 full weeks on the Magic Mouth wash.
It was at that point that I asked myself 'Self? Do you want to live the rest of your life on one of these drugs and be sick most of the time - or do you want to live the rest of your life feeling good as long as that lasts - and play and laugh and travel'? I chose option #2 - and am having a fabulous life. I could get run over by a bus - or a car crash - or fall overboard while whale watching - or or or or - long before the RCC gets me. I've got no expiration date as far as I know - so I am one happy camper.
Good luck to you, Jeff - and I'll pray that you do extremely well on Sutent! I know many people do great on it - I just didn't happen to be one of them.
LizB0 -
FABULOUS!jhsu said:You are my mentor
Liz, you’ve been shown me how to live through RCC with dignity. I would like to assume the Happy Dog picture borrowed from you to carry on the baton. A happy dog is a healthy dog, always. (Please let me know if you think otherwise)
Jon from the other side the Earth
Hi Jon - SO glad that you've continued the 'legacy' of the 'happy dog' pic! Yes,a happy dog is a healthy dog - and that's kind of the way I see myself. I am one happy dog and I'll remain healthy as long as my 'tail keeps wagging'.
LizB0 -
Found Itlbinmsp said:More later
I'm off to the airport for another little adventure so this will be short -
TW you goose! I wasn't saying your communication skills needed work - but MY understanding skills needed work! I've been retired for a while now and even though my background is medicine, I've allowed my brain to retire too!
When I return I will review the video you cited and will also provide the shortcut to that all-day seminar (actually, I believe I put the link in here somewhere).
The immune system is a very strange animal. I have always been extremely heathy (only getting a cold or flu about every 5 years) - so I always thought I could beat most anything. Now, I was a smoker - quit over 20 years ago so most probably that played a significant role in what is happening today.
OOPS - gotta run - my ride is here - off to Frankenmuth, Michigan for the Puppy Bowl! YIPPPEE!
Later my friends.
LizB
Here is the u-tube link for the 2012 seminar that was done live via webcast regarding RCC.
http://www.youtube.com/watch?v=jB43eIZAR2o&list=LEv0VRYOltlNQJLCyNMN61NwA&index=0&feature=plcp
Just back from Michigan where my friend and I spend two days of utter joy getting covered by dog slobber! Every year they sponsor the 'Dog Bowl' in Frankenmuth, MI - we attended last year and now this year. I don't care about the events - I just fill my pockets with healthy and safe 'cookies' (actually just a healthy kibble) - and wander around loving all the dogs! The owners are amaing people - who absolutely love their dogs - and enjoy people who love them too. Dogs of every breed, every size - dog lovers HEAVEN!
LizB0 -
Hi Liz,lbinmsp said:Found It
Here is the u-tube link for the 2012 seminar that was done live via webcast regarding RCC.http://www.youtube.com/watch?v=jB43eIZAR2o&list=LEv0VRYOltlNQJLCyNMN61NwA&index=0&feature=plcp
Just back from Michigan where my friend and I spend two days of utter joy getting covered by dog slobber! Every year they sponsor the 'Dog Bowl' in Frankenmuth, MI - we attended last year and now this year. I don't care about the events - I just fill my pockets with healthy and safe 'cookies' (actually just a healthy kibble) - and wander around loving all the dogs! The owners are amaing people - who absolutely love their dogs - and enjoy people who love them too. Dogs of every breed, every size - dog lovers HEAVEN!
LizB
You're an
Hi Liz,
You're an inspiration to us all with your courage and determination. Nothing but good energy coming your way.
And you vacation sounds wonderful. I can't think of a more therapeutic vacation than a Dog Bowl, complete with wags and licks. One of my all time favorite quotes is Will Rogers, "If there are no dogs in Heaven, then I want to go where they went."0 -
luck of the drawgarym said:You amaze me!!!
Dear Liz,
You have "lived" with RCC longer than anyone I have known and your story helped me greatly at a time when I needed it most. I know that you have weighed all options and reached the decision that is right for you and I can tell from the tone of your post that you are at peace, once again raising the spirits of those that care for you. To me you epitomize courage, conviction and attitude, should I ever need to make a similar decision I will think of you, of that I am certain. I look forward to future updates on your living, laughing, and travels, and who knows, maybe being at peace is what your immune system needs in order to fully engage.
Rock on,
Gary
Gosh, that makes me think. Last year when I passed on the votrient trial, I was also thinking that it would be the last summer of my life. I wanted to enjoy it and did. I did not want to feel miserable heading to the end. What was the point? Liz, I think I have an idea where you are at. You are my hero. Love you Liz.
Fox0 -
My sentiments also Fox. In fact I thought Liz ought to be awarded the Freedom of St. Paul but seeing reviews of "Freedom" , maybe the Key to the City would be more appropriate!foxhd said:luck of the draw
Gosh, that makes me think. Last year when I passed on the votrient trial, I was also thinking that it would be the last summer of my life. I wanted to enjoy it and did. I did not want to feel miserable heading to the end. What was the point? Liz, I think I have an idea where you are at. You are my hero. Love you Liz.
Fox0
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