2 Surgeries==> then IL-2 ==> now Votrient/Pazopanib
Comments
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Past wheat germ user, but...Texas_wedge said:Avemar
Actually Ange, I already do. At least I have, for many years, used something similar (maybe superior?) - straight wheatgerm, which, together with milled flaxseed, I sprinkle liberally over my porridge. That's basically all I have for breakfast now, after stopping grapefruit juice now that I'm on Votrient (though the jury's still out on that one!). Avemar has had a huge promotion in the last couple of years in the UK. The one thing that strikes me is that it looks like a horrendously pricey way of eating wheatgerm!!
I use that research algorithm too, Phoenix, and I commend it also. My version is a bit simpler, though - I rely almost entirely on what you say, your postings invariably being highly informative and useful.
Is Rotty your pooch's name? Maybe eats like you so that's why (s)he's always seen to be lying down
Should maybe take up golf and skiing!
The Rott's name is Scorpio and he eats like two of me--
I was using wheat germ, but stopped eating it when I stopped eating glutens- since I thought it might have been exascerbating the Crohn's disease that I later found I did NOT have after being treated for it more than 15 years. Hmph!0 -
Scan resultsPhoenix Rising said:Stay happy and positive!
Moraboy, I am usually nutso just before a scan, and up to the day of my appointment to get the results. This time, I was wholly positive and had been so for weeks before the scan. I think a positive outlook does the body good! Let us know how it goes!
Today I got my scan results after 2 months of being on Votrient. It was a mixed review. First the good news, my kidney tumor has shrunk by almost 40%. Of course when you give good news there is always bad news to follow, my lung mets have grown by 50% and 80% not so good. So the doctor is going to change my meds to Afinator, in hoping to slow down the lung mets. She is also thinking of moving up the surgery to remove my kidney. The mets in my liver were just slightly larger then before. We just have to wait and see what the doctors at MDA think.
My mood and spirits are good, I am just dealing with what comes my way.
Happy Thanksgiving everyone.0 -
Scan resultsMoraboy said:Scan results
Today I got my scan results after 2 months of being on Votrient. It was a mixed review. First the good news, my kidney tumor has shrunk by almost 40%. Of course when you give good news there is always bad news to follow, my lung mets have grown by 50% and 80% not so good. So the doctor is going to change my meds to Afinator, in hoping to slow down the lung mets. She is also thinking of moving up the surgery to remove my kidney. The mets in my liver were just slightly larger then before. We just have to wait and see what the doctors at MDA think.
My mood and spirits are good, I am just dealing with what comes my way.
Happy Thanksgiving everyone.
I guess that with your particular platter of mets, Steve, it was improbable that it would be all good news. That said, it's got to be a major triumph that that huge kidney tumour has shrunk so much (is the percentage in linear measure? If so, then in volumetric terms it's now only a fifth of the size it was!) It's great that the plan is working and you'll be able to have a nephrectomy rather sooner. That large reduction in total tumour burden will improve the capacity of your immune system to fight the mets and at 50ish you have (comparatively) youth on your side.
I appreciate that there are questions of insurance/costs and also toxicity but a thought occurs to me. We know that a judicious use of a combo of drugs often produces a response much greater than the sum of the parts. The doc is thinking of switching you to everolimus and dropping the Votrient that has done a great job on your primary tumour. Might there not be a case for considering continuing the Votrient (perhaps at a reduced dose) and adding the Afinitor? The Votrient side-effects are relatively gentle, anyway. I have no idea about possible interactions between Votrient and Afinitor but one is a VEGF drug and the other an mTOR inhibitor and we know that RCC seems vulnerable to the old one-two punch combo.
Unless you think this is a stupid suggestion, maybe you could put it to your doc (and let us know the answer she gives)? It's good that your liver isn't so bad. How about the lymph nodes?
Are you continuing to teach? Anyway, it's great to hear that your mood and spirits continue to stand you in good stead. I hope it's onward and upward from here.0 -
TW that sounds like a goodTexas_wedge said:Scan results
I guess that with your particular platter of mets, Steve, it was improbable that it would be all good news. That said, it's got to be a major triumph that that huge kidney tumour has shrunk so much (is the percentage in linear measure? If so, then in volumetric terms it's now only a fifth of the size it was!) It's great that the plan is working and you'll be able to have a nephrectomy rather sooner. That large reduction in total tumour burden will improve the capacity of your immune system to fight the mets and at 50ish you have (comparatively) youth on your side.
I appreciate that there are questions of insurance/costs and also toxicity but a thought occurs to me. We know that a judicious use of a combo of drugs often produces a response much greater than the sum of the parts. The doc is thinking of switching you to everolimus and dropping the Votrient that has done a great job on your primary tumour. Might there not be a case for considering continuing the Votrient (perhaps at a reduced dose) and adding the Afinitor? The Votrient side-effects are relatively gentle, anyway. I have no idea about possible interactions between Votrient and Afinitor but one is a VEGF drug and the other an mTOR inhibitor and we know that RCC seems vulnerable to the old one-two punch combo.
Unless you think this is a stupid suggestion, maybe you could put it to your doc (and let us know the answer she gives)? It's good that your liver isn't so bad. How about the lymph nodes?
Are you continuing to teach? Anyway, it's great to hear that your mood and spirits continue to stand you in good stead. I hope it's onward and upward from here.
TW that sounds like a good approach. I wonder what the doctor will say about it. 40 percent shrinkage is very desirable in only two months. Makes me wonder if they keep going maybe she can keep her kidney. I always wondered why they didn't try to shrink the tumor in the kidneys and try to save them.
How is your pressure TW? Do you feel any better pain wise??0 -
TWangec said:TW that sounds like a good
TW that sounds like a good approach. I wonder what the doctor will say about it. 40 percent shrinkage is very desirable in only two months. Makes me wonder if they keep going maybe she can keep her kidney. I always wondered why they didn't try to shrink the tumor in the kidneys and try to save them.
How is your pressure TW? Do you feel any better pain wise??
Ange, it's actually best, with a primary tumour, to cut it out completely, if that's possible. If it isn't (Steve's was huge at 15cm x 15cm and awkwardly placed) then neo-adjuvant therapy to shrink it, with a view to making it operable, is desirable. At worst, shrinkage will lessen pain.
My BP is well up and I've just been given a presciption for a mild anti-hypertensive which will enable me to go on with intensive exercise without anxiety. I reckon the Votrient is working because my pain level has gone down a little.0 -
TW I would say if the painTexas_wedge said:TW
Ange, it's actually best, with a primary tumour, to cut it out completely, if that's possible. If it isn't (Steve's was huge at 15cm x 15cm and awkwardly placed) then neo-adjuvant therapy to shrink it, with a view to making it operable, is desirable. At worst, shrinkage will lessen pain.
My BP is well up and I've just been given a presciption for a mild anti-hypertensive which will enable me to go on with intensive exercise without anxiety. I reckon the Votrient is working because my pain level has gone down a little.
TW I would say if the pain is less then that means shrinkage. I am wondering how they will tell how much it shrinks since you have not had a scan in a while now. But they may be able to tell. Just happy that the pain is less. The by should be manageable. It has only been two weeks and to feel a difference already is hopeful.
I was again looking at that interview with the doctors from MSK where the doctor says it is a gene mutation where the blood vessels just keep creating themselves and the tumors grow quickly. Which is why chemo doesn't really kill the tumors because they are pushed by the excessive blood flow.
I am trying to get mom in to see Dr. motzer. Also her onc said she is most probably clear cell but I hope to get a second opinion.
Prayers for all!0 -
Shrinkageangec said:TW I would say if the pain
TW I would say if the pain is less then that means shrinkage. I am wondering how they will tell how much it shrinks since you have not had a scan in a while now. But they may be able to tell. Just happy that the pain is less. The by should be manageable. It has only been two weeks and to feel a difference already is hopeful.
I was again looking at that interview with the doctors from MSK where the doctor says it is a gene mutation where the blood vessels just keep creating themselves and the tumors grow quickly. Which is why chemo doesn't really kill the tumors because they are pushed by the excessive blood flow.
I am trying to get mom in to see Dr. motzer. Also her onc said she is most probably clear cell but I hope to get a second opinion.
Prayers for all!
That's right, Ange - my oncologisr confirmed yesterday that there's been a gap from last scan to start of drug treatment such that we don't know exactly where we started from, considering the tumour was growing very rapidly. My next scan will be after 2 cycles on Votrient, so not until early January. I agree that if the pain keeps lessening it would seem like a promising sign.
I do hope you can get Mom to see Dr. Motzer soon and getting a second opinion is invariably a good idea, even if it leads to more head scratching. Please give her my best wishes.0 -
TW, how long is a cycle? IsTexas_wedge said:Shrinkage
That's right, Ange - my oncologisr confirmed yesterday that there's been a gap from last scan to start of drug treatment such that we don't know exactly where we started from, considering the tumour was growing very rapidly. My next scan will be after 2 cycles on Votrient, so not until early January. I agree that if the pain keeps lessening it would seem like a promising sign.
I do hope you can get Mom to see Dr. Motzer soon and getting a second opinion is invariably a good idea, even if it leads to more head scratching. Please give her my best wishes.
TW, how long is a cycle? Is it one month? Is the medicine working for the blood pressure? Does it interfere with the main idea behind the Votrient? I did read somewhere where they can tell just how big something was before it shrunk. I am wondering if scan man knows the answer to that. Something about the tissue area left behind. I am so glad that the pain is less and less. You must be noticiing that you are waiting longer in between to take the pain meds,
I am in the process of sending papers from mom's current doctor to Sloans. They should have the, hopefully by Monday and then set then appt. from there. Not sure if we will get Motzer though as the woman said maybe an associate. I will push for it though and my brother is friends with someone who's brother works there also on melanoma. So I hope at least I can name drop and see if it helps. Buying any case Sloans is the best place to go no matter who we see.
Much love to you TW, please keep posted. So far no other symptoms right? Xxoo0 -
Cyclesangec said:TW, how long is a cycle? Is
TW, how long is a cycle? Is it one month? Is the medicine working for the blood pressure? Does it interfere with the main idea behind the Votrient? I did read somewhere where they can tell just how big something was before it shrunk. I am wondering if scan man knows the answer to that. Something about the tissue area left behind. I am so glad that the pain is less and less. You must be noticiing that you are waiting longer in between to take the pain meds,
I am in the process of sending papers from mom's current doctor to Sloans. They should have the, hopefully by Monday and then set then appt. from there. Not sure if we will get Motzer though as the woman said maybe an associate. I will push for it though and my brother is friends with someone who's brother works there also on melanoma. So I hope at least I can name drop and see if it helps. Buying any case Sloans is the best place to go no matter who we see.
Much love to you TW, please keep posted. So far no other symptoms right? Xxoo
Yes, a 1 month cycle on Votrient, unlike the 4 weeks on, 2 off, or 2 weeks on 1 off, used with Sutent. I've just taken my first mini-dose of 5mg of the BP med so it's a little early to comment on its efficacy! I believe the BP meds don't weaken the effect of the Votrient. The cancer pain continues to lessen and I am, indeed, taking the painkillers at longer intervals.
I hope you manage to get Motzer for your Mom but anyone there is likely to be good and you never know, you might get the next Motzer, or an up and coming replica of Jan Dutcher. Yes, we'll surely stay in touch and I can confirm no side-effects so far but maybe it's still early days for some of them to appear.0 -
GOOD NEWS...Texas_wedge said:TW
Ange, it's actually best, with a primary tumour, to cut it out completely, if that's possible. If it isn't (Steve's was huge at 15cm x 15cm and awkwardly placed) then neo-adjuvant therapy to shrink it, with a view to making it operable, is desirable. At worst, shrinkage will lessen pain.
My BP is well up and I've just been given a presciption for a mild anti-hypertensive which will enable me to go on with intensive exercise without anxiety. I reckon the Votrient is working because my pain level has gone down a little.
T,
I've been wanting to ask how you have been feeling since starting on Votrient, but didn't want to intrude so its good to learn you are showing signs of improvement. From what I've seen on other posts, pain levels seem to be a good indicator of drug effectiveness, I'm sure it means the same for you.
Rock on,
Gary0 -
Good newsgarym said:GOOD NEWS...
T,
I've been wanting to ask how you have been feeling since starting on Votrient, but didn't want to intrude so its good to learn you are showing signs of improvement. From what I've seen on other posts, pain levels seem to be a good indicator of drug effectiveness, I'm sure it means the same for you.
Rock on,
Gary
Don't bet on it Gary - it's different when you're upside down!0 -
TW, mom will see Dr. motzerTexas_wedge said:Shrinkage
That's right, Ange - my oncologisr confirmed yesterday that there's been a gap from last scan to start of drug treatment such that we don't know exactly where we started from, considering the tumour was growing very rapidly. My next scan will be after 2 cycles on Votrient, so not until early January. I agree that if the pain keeps lessening it would seem like a promising sign.
I do hope you can get Mom to see Dr. Motzer soon and getting a second opinion is invariably a good idea, even if it leads to more head scratching. Please give her my best wishes.
TW, mom will see Dr. motzer at Sloans on Thursday morning. Providing we don't get snowed out. I will let you I know how it goes. Hope you are doing well.0 -
Motzerangec said:TW, mom will see Dr. motzer
TW, mom will see Dr. motzer at Sloans on Thursday morning. Providing we don't get snowed out. I will let you I know how it goes. Hope you are doing well.
Excellent news Ange - your persistence is really getting you somewhere and I look forward to hearing how it goes.0 -
New Lab Results In!
Good news! I had a CT scan and MRI last week, and the doc says my lungs mets and lymph node are stable. Here are the specifics:
(Scans done with and without contrast)
Right hilar lymphadenopathy and, right lower lobe pulmonary nodule, and small right pleural effusion is seen. The liver is normal in size and configuration. Small scattered biliary hamartomas are identified.
There is enlargement right hilum compatible with adenopathy, however, comparison is diffucult because lack of intravenous contrast as the node cannot be distinct from the surrounding vessels. It is, however, grossly unchanged from the recent PET CT.
There are a few scattered pulmonary nodules, the largest of which is in the right lower lobe measuring 10 x 7 mm. Another elongated nodule versus intravascular metastasis is seen. There is also a stable 5 mm nodule right upper lobe, a 4 mm nodule in the right upper lobe, a 3 mm nodule on the right upper lobe. No new pulmonary nodules are seen. There is no pleural effusion (Huh? I thought they just said above, small r. pleural effusion is seen).
Postop changes are seen status post r. nephrectomy. No aggressive osseous lesions are seen.Impression:
1. No change in the pulmonary nodules which are stable since the most recent PET CT new or increased from 2/25/10 exam probably metastasis.
2. Enlarged right hilar lymph node is difficult ot compare to our exams given lack of intravenous contrast byt is grossly unchanged from the most recent PET CT.
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Good news PhoenixPhoenix Rising said:New Lab Results In!
Good news! I had a CT scan and MRI last week, and the doc says my lungs mets and lymph node are stable. Here are the specifics:
(Scans done with and without contrast)
Right hilar lymphadenopathy and, right lower lobe pulmonary nodule, and small right pleural effusion is seen. The liver is normal in size and configuration. Small scattered biliary hamartomas are identified.
There is enlargement right hilum compatible with adenopathy, however, comparison is diffucult because lack of intravenous contrast as the node cannot be distinct from the surrounding vessels. It is, however, grossly unchanged from the recent PET CT.
There are a few scattered pulmonary nodules, the largest of which is in the right lower lobe measuring 10 x 7 mm. Another elongated nodule versus intravascular metastasis is seen. There is also a stable 5 mm nodule right upper lobe, a 4 mm nodule in the right upper lobe, a 3 mm nodule on the right upper lobe. No new pulmonary nodules are seen. There is no pleural effusion (Huh? I thought they just said above, small r. pleural effusion is seen).
Postop changes are seen status post r. nephrectomy. No aggressive osseous lesions are seen.Impression:
1. No change in the pulmonary nodules which are stable since the most recent PET CT new or increased from 2/25/10 exam probably metastasis.
2. Enlarged right hilar lymph node is difficult ot compare to our exams given lack of intravenous contrast byt is grossly unchanged from the most recent PET CT.
Glad to hear this Phoenix. Woohoo! Next goal --reduction; after that NED; and then back into those cute little heels!
Honestly, really pleased for you.
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Thanks Alice!And what isalice124 said:Good news Phoenix
Glad to hear this Phoenix. Woohoo! Next goal --reduction; after that NED; and then back into those cute little heels!
Honestly, really pleased for you.
Thanks Alice!
And what is life really all about if a lady can't wear cute heels? I've just gotta get to NED, if for nothing else-- the heels!0 -
Hi John, just seeing thisone putt said:4 X 200
Tex,I take mine at night after dinner.Since Alice and I ussually eat late this winds up being in the 10:00-11:00 range.My research nurse suggested taking it later in case I developed diarrhea.She felt it might make it easier to deal with this side effect at night.I was also told if a time change was in order,to increase or decrease it one hour at a time so as to keep taking the dosage as close to 24 hours apart as possible.
Ange,thanks for the tip about Vitamin B. I've recently developed the leg cramp side effect,and not being a fan of gatorade or smart water this seems like a reasonable alternative for me.Hi John, just seeing this post now.. sorry this reply is so late. Hope you and Alice are doing well. How are the leg cramps? I have heard it can also be from some of the bp meds like Metroporal. One thing I wanted to mention. The GP just told mom that gatorade is hard on the kidney function and should only be used if dehydrated. Mom was severaly dehydrated and her creatinine is 2.42 so we used gatorade beause we thoguht she said to do so. On the visit on Friday she said no gatorade as it has alot of salt and sugar and not good for kidneys. Incidently, if they give intervenous in the hospital it usally also contains alot of salt and sugar. So it leaves us to wonder which is the lesser evil. Just thought i would pass it on since i had recommended the gatorade on another gps advice. Love to Alice and big hugs!
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Skip the Gatoradeangec said:Hi John, just seeing this
Hi John, just seeing this post now.. sorry this reply is so late. Hope you and Alice are doing well. How are the leg cramps? I have heard it can also be from some of the bp meds like Metroporal. One thing I wanted to mention. The GP just told mom that gatorade is hard on the kidney function and should only be used if dehydrated. Mom was severaly dehydrated and her creatinine is 2.42 so we used gatorade beause we thoguht she said to do so. On the visit on Friday she said no gatorade as it has alot of salt and sugar and not good for kidneys. Incidently, if they give intervenous in the hospital it usally also contains alot of salt and sugar. So it leaves us to wonder which is the lesser evil. Just thought i would pass it on since i had recommended the gatorade on another gps advice. Love to Alice and big hugs!
Hi Angec,
Please take the time, when you can, to review this video lecture given by Dr. Robert Lustig called, "Sugar - The Bitter Truth":
http://www.youtube.com/watch?NR=1&feature=endscreen&v=dBnniua6-oM
In it you will discover that Gatorade not only contains lots of sugar - but the kind of sugar it contains is High Fructose Corn Syrup (HFCS). Fructose, unlike glucose, can only be metabolized by the liver. In Dr. Lustig's (and so many others) view excess sugar should be considered a "chronic" (not acute) poison. That is, unlike an acute poison such as arsenic, this one acts slowly over time. Gary Taubes, wrote extensively about this in an article titled, "Is Sugar Toxic?" in the New York Times Magazine back in April 2011:
http://www.nytimes.com/2011/04/17/magazine/mag-17Sugar-t.html?pagewanted=all&_r=0
Many sweetened drinks contain high levels of sodium (salt). Then sugar (usually fructose) is added to it to mask the salty taste. The result? You drink more of the beverage and yet still remain thirsty. It is insidious.
The original Gatorade, developed by the University of Florida, used to taste just awful. When Pepsi bought the rights to market and manufacture it they changed the formula to include tons of fructose to mask that awful taste...
Gatorade should only be consumed by atheletes. The ONLY beverage that can safely relieve hydration is called water.
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Thank you Nano Second, i willNanoSecond said:Skip the Gatorade
Hi Angec,
Please take the time, when you can, to review this video lecture given by Dr. Robert Lustig called, "Sugar - The Bitter Truth":
http://www.youtube.com/watch?NR=1&feature=endscreen&v=dBnniua6-oM
In it you will discover that Gatorade not only contains lots of sugar - but the kind of sugar it contains is High Fructose Corn Syrup (HFCS). Fructose, unlike glucose, can only be metabolized by the liver. In Dr. Lustig's (and so many others) view excess sugar should be considered a "chronic" (not acute) poison. That is, unlike an acute poison such as arsenic, this one acts slowly over time. Gary Taubes, wrote extensively about this in an article titled, "Is Sugar Toxic?" in the New York Times Magazine back in April 2011:
http://www.nytimes.com/2011/04/17/magazine/mag-17Sugar-t.html?pagewanted=all&_r=0
Many sweetened drinks contain high levels of sodium (salt). Then sugar (usually fructose) is added to it to mask the salty taste. The result? You drink more of the beverage and yet still remain thirsty. It is insidious.
The original Gatorade, developed by the University of Florida, used to taste just awful. When Pepsi bought the rights to market and manufacture it they changed the formula to include tons of fructose to mask that awful taste...
Gatorade should only be consumed by atheletes. The ONLY beverage that can safely relieve hydration is called water.
Thank you Nano Second, i will indeed watch the video. I am in the same line of thought. Water is the safetest method to relieve dehydration. The doctor yesterday said it can be used as an emergency for a very short time. I don't like the stuff either. I will only drink water, green teas and coffee myself. Thank you for the information. I am sure others will find it useful as well. With so many different opinions from doctors, sometimes it feels as you are darned if you don't and darned if you do! Be well!
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Sugar & Cancerangec said:Thank you Nano Second, i will
Thank you Nano Second, i will indeed watch the video. I am in the same line of thought. Water is the safetest method to relieve dehydration. The doctor yesterday said it can be used as an emergency for a very short time. I don't like the stuff either. I will only drink water, green teas and coffee myself. Thank you for the information. I am sure others will find it useful as well. With so many different opinions from doctors, sometimes it feels as you are darned if you don't and darned if you do! Be well!
Hi Angec,
Very pleased you are going to check out the video.
Do read Gary Taubes piece as well. It will take less time (the video is 90 minutes long), but, more importantly, at the end he spells out the connection to cancer. Here is a portion of it (and show it to those doctors in the hospital):
"Now most researchers will agree that the link between Western diet or lifestyle and cancer manifests itself through this association with obesity, diabetes and metabolic syndrome — i.e., insulin resistance. This was the conclusion, for instance, of a 2007 report published by the World Cancer Research Fund and the American Institute for Cancer Research — “Food, Nutrition, Physical Activity and the Prevention of Cancer.”
So how does it work? Cancer researchers now consider that the problem with insulin resistance is that it leads us to secrete more insulin, and insulin (as well as a related hormone known as insulin-like growth factor) actually promotes tumor growth.
As it was explained to me by Craig Thompson, who has done much of this research and is now president of Memorial Sloan-Kettering Cancer Center in New York, the cells of many human cancers come to depend on insulin to provide the fuel (blood sugar) and materials they need to grow and multiply. Insulin and insulin-like growth factor (and related growth factors) also provide the signal, in effect, to do it. The more insulin, the better they do. Some cancers develop mutations that serve the purpose of increasing the influence of insulin on the cell; others take advantage of the elevated insulin levels that are common to metabolic syndrome, obesity and type 2 diabetes. Some do both. Thompson believes that many pre-cancerous cells would never acquire the mutations that turn them into malignant tumors if they weren’t being driven by insulin to take up more and more blood sugar and metabolize it.
What these researchers call elevated insulin (or insulin-like growth factor) signaling appears to be a necessary step in many human cancers, particularly cancers like breast and colon cancer. Lewis Cantley, director of the Cancer Center at Beth Israel Deaconess Medical Center at Harvard Medical School, says that up to 80 percent of all human cancers are driven by either mutations or environmental factors that work to enhance or mimic the effect of insulin on the incipient tumor cells. Cantley is now the leader of one of five scientific “dream teams,” financed by a national coalition called Stand Up to Cancer, to study, in the case of Cantley’s team, precisely this link between a specific insulin-signaling gene (known technically as PI3K) and tumor development in breast and other cancers common to women...
“I have eliminated refined sugar from my diet and eat as little as I possibly can,” Thompson told me, “because I believe ultimately it’s something I can do to decrease my risk of cancer.” Cantley put it this way: “Sugar scares me.”
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