first scan results good
Well Nick had his first post-Sutent scan 2 weeks ago and we got the results on Thursday.
The bone lesions showed no signs of growth and were as the consultant said 'stable'. He has lesions on his right pelvis and left collarbone. Don't know how large they are. The consultant told us that these would not shrink ever, but she hoped that they would remain stable. She said it was incredibly hard to target bones once it's there - does anyone else have any other info on this please?
The lung met has shrunk (again). It had shrunk at the scan in January 2013 and that was after the kidney was removed but no drug treatment started. Now it has shrunk again after 2 cyles of Sutent. And the 1st cycle was interrupted becuase of high blood pressure and he missed a whole week of the sutent. Don't know by how much is has shrunk. I will ask those questions after the next scan whenever that is.
Nick is in a Europe-wide study to find out if it is best to have the nephrectomy first and sutent second or whether 3 cycles of sutent before the nephrectomy work better. He was in the randomised surgery first group. He had his kidney removed 7 December and started Sutent on 14 Jan 2013.
We are so grateful that it has stablised/shrunk. The main side effects seem are high blood pressure which they are still trying to sort out; taste changes (any ideas how to combat or lessen that would be wonderful ??); hair colour changes, nose bleeds, rash on his foreskin (ouch) but on the whole we are very lucky that the side effects aren't as bad as others seem to get.
Anyway I just wanted to share the great news with you all. Have a lovely Easter
Terri
Comments
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Scan results
Splendid news. "She said it was incredibly hard to target bones once it's there - does anyone else have any other info on this please?" - I hope Fox and Neil may help you on this one.
BP is the important s-e and with a little experimentation, if necessary, is usually easily controlled with suitable meds. Hair - inevitable; nose-bleeds common and come and go; taste changes often resolve after a little while.
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Bone Mets
TerriNick,
I have (only) bone mets on my sacrum (base of my spine) and left femur (thigh/hip). They were first discovered back in late July 2012. At that time I was put on Sutent (50mg/day) but that drug alone is NOT sufficient for fighting bone mets.
You absolutely must add either Xgeva (Denosumab) or Zometa (Zoledronic Acid) to the mix.
I am on Xgeva. It is given as a shot (120mg) once a month. It is very easy on the kidney (whereas Zometa requires constant monitoring of kidney function). Also, Xgeva seems to work faster and slightly better than Zometa - although either one is perfectly fine. Zometa is thought by some to have some additional anti-tumor properties. Others voice concerns that Xgeva may have some immunosuppressant features (so you might not choose it if you were considering an immunotherapy such as HDIL2).
Regardless, either one of these drugs works in tandem with Sutent. Sutent without one of these drugs does not have the efficacy discovered when both are given together. So get on one of them ASAP.
Also, both of these drugs will add a slight risk of ONJ (Osteonecrosis of the Jaw). That means no gum surgery or tooth extractions, etc. while taking them.
As for me, my last full body nuclear bone scan (done in November) only showed "dramatic" response (quote from my bone cancer specialist). The area around my sacrum now "looks normal". The lesions on my left femur are only showing new bone growth.
My next full body scan will be in May.
Hope that helps,
-Neil (NanoSecond)
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Sounds promising
Terri,
Sounds promising and I know you're sighing a breath of relief. If you haven't already, ask your medical team to provide you a copy of the scan. I know in John's trial, John receives a copy of the initial scan and then gets a RECIST (Response Evaluation Criteria in Solid Tumors) report a week or so later that is an easier read as far as tumor reduction goes. Not sure if the same holds true in Nick's trial but you might ask.
Again, keep the good news coming.
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Hi NeilNanoSecond said:Bone Mets
TerriNick,
I have (only) bone mets on my sacrum (base of my spine) and left femur (thigh/hip). They were first discovered back in late July 2012. At that time I was put on Sutent (50mg/day) but that drug alone is NOT sufficient for fighting bone mets.
You absolutely must add either Xgeva (Denosumab) or Zometa (Zoledronic Acid) to the mix.
I am on Xgeva. It is given as a shot (120mg) once a month. It is very easy on the kidney (whereas Zometa requires constant monitoring of kidney function). Also, Xgeva seems to work faster and slightly better than Zometa - although either one is perfectly fine. Zometa is thought by some to have some additional anti-tumor properties. Others voice concerns that Xgeva may have some immunosuppressant features (so you might not choose it if you were considering an immunotherapy such as HDIL2).
Regardless, either one of these drugs works in tandem with Sutent. Sutent without one of these drugs does not have the efficacy discovered when both are given together. So get on one of them ASAP.
Also, both of these drugs will add a slight risk of ONJ (Osteonecrosis of the Jaw). That means no gum surgery or tooth extractions, etc. while taking them.
As for me, my last full body nuclear bone scan (done in November) only showed "dramatic" response (quote from my bone cancer specialist). The area around my sacrum now "looks normal". The lesions on my left femur are only showing new bone growth.
My next full body scan will be in May.
Hope that helps,
-Neil (NanoSecond)
Wow that is a really impressive response you are enjoying from your drug recipe,i am in a way looking forward to hear how your next scan results turn out.
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Hi LimelifeLimelife50 said:Hi Neil
Wow that is a really impressive response you are enjoying from your drug recipe,i am in a way looking forward to hear how your next scan results turn out.
You and me both.
However, such a nice initial response is paradoxically leading to a higher level of "scanxiety" for me. Renal cancer is such sneaky beast that I always remind myself I should never take anything for granted.
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xgevaNanoSecond said:Bone Mets
TerriNick,
I have (only) bone mets on my sacrum (base of my spine) and left femur (thigh/hip). They were first discovered back in late July 2012. At that time I was put on Sutent (50mg/day) but that drug alone is NOT sufficient for fighting bone mets.
You absolutely must add either Xgeva (Denosumab) or Zometa (Zoledronic Acid) to the mix.
I am on Xgeva. It is given as a shot (120mg) once a month. It is very easy on the kidney (whereas Zometa requires constant monitoring of kidney function). Also, Xgeva seems to work faster and slightly better than Zometa - although either one is perfectly fine. Zometa is thought by some to have some additional anti-tumor properties. Others voice concerns that Xgeva may have some immunosuppressant features (so you might not choose it if you were considering an immunotherapy such as HDIL2).
Regardless, either one of these drugs works in tandem with Sutent. Sutent without one of these drugs does not have the efficacy discovered when both are given together. So get on one of them ASAP.
Also, both of these drugs will add a slight risk of ONJ (Osteonecrosis of the Jaw). That means no gum surgery or tooth extractions, etc. while taking them.
As for me, my last full body nuclear bone scan (done in November) only showed "dramatic" response (quote from my bone cancer specialist). The area around my sacrum now "looks normal". The lesions on my left femur are only showing new bone growth.
My next full body scan will be in May.
Hope that helps,
-Neil (NanoSecond)
Hi Neil
Thanks for the info. I am not sure if Nick will be allowed to have the other drug. He is in a study (Surtime Study) and it may be that no other drugs are allowed. But I will research it and ask the consultant when we next see her on 16 May. What about side effects from Xgeva - have you noticed any please?
Terri
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scan copiesalice124 said:Sounds promising
Terri,
Sounds promising and I know you're sighing a breath of relief. If you haven't already, ask your medical team to provide you a copy of the scan. I know in John's trial, John receives a copy of the initial scan and then gets a RECIST (Response Evaluation Criteria in Solid Tumors) report a week or so later that is an easier read as far as tumor reduction goes. Not sure if the same holds true in Nick's trial but you might ask.
Again, keep the good news coming.
Hi Alice
Thanks for that info. I will ask when I next see the consultant in May.
Terri
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XgevaTerriNick said:xgeva
Hi Neil
Thanks for the info. I am not sure if Nick will be allowed to have the other drug. He is in a study (Surtime Study) and it may be that no other drugs are allowed. But I will research it and ask the consultant when we next see her on 16 May. What about side effects from Xgeva - have you noticed any please?
Terri
Hi Terri,
Please do inquire with your doctors - I would hope they would make an exception in this case. It really is that significant.
I have had no side effects from taking Xgeva. Nor am I aware of anyone else who has reported any. However, you should keep in mind that I also have had no significant side effects from taking Sutent* - even though I have been taking it since August at its maximum dosage (50mg/day) and for 4wks straight followed by (only) a 1wk break off of it (which is not standard - most people have a 2wk break off).
The primary reason I have had no significant side effects (I believe) is due to my special diet and certain supplements that I take.
*To be completely accurate: During my very first cycle of taking Sutent I did lose all sense of taste about 3+ wks into the cycle. However, I then took a simple supplement (the most common amino acid in everyone's body) and my taste was fully restored within a few days. After that I never lost my sense of taste again. That continues to this day (some 7 months later) and without my having to take this supplement.
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taste changesTexas_wedge said:Scan results
Splendid news. "She said it was incredibly hard to target bones once it's there - does anyone else have any other info on this please?" - I hope Fox and Neil may help you on this one.
BP is the important s-e and with a little experimentation, if necessary, is usually easily controlled with suitable meds. Hair - inevitable; nose-bleeds common and come and go; taste changes often resolve after a little while.
Hi Texas - Nick says thanks. You have cheered him up no end. The one thing he hates is that in weeks 3 and 4 everything tastes like cardboard. So hearing from you that the taste change might resolve after a while has really made him smile.
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diet sheetNanoSecond said:Xgeva
Hi Terri,
Please do inquire with your doctors - I would hope they would make an exception in this case. It really is that significant.
I have had no side effects from taking Xgeva. Nor am I aware of anyone else who has reported any. However, you should keep in mind that I also have had no significant side effects from taking Sutent* - even though I have been taking it since August at its maximum dosage (50mg/day) and for 4wks straight followed by (only) a 1wk break off of it (which is not standard - most people have a 2wk break off).
The primary reason I have had no significant side effects (I believe) is due to my special diet and certain supplements that I take.
*To be completely accurate: During my very first cycle of taking Sutent I did lose all sense of taste about 3+ wks into the cycle. However, I then took a simple supplement (the most common amino acid in everyone's body) and my taste was fully restored within a few days. After that I never lost my sense of taste again. That continues to this day (some 7 months later) and without my having to take this supplement.
Hi Neil
Yes I did email you and you kindly sent me your diet info. I have taken a lot of it on board but Nick really does like milk and sugar in his tea. He is unhappy to lose milk, cheese, eggs and sugar although he is now looking at ways of reducing his intake of these. He was already a vegetarian but he does not eat fish at all and will not consider it. However we are now going for loads more vegetables, juices, smoothies and a lot of the supplements that you suggested i.e. Glutamine, Astragalus, Resveratol etc. Thank you so much for taking so much trouble to research and put together what is a really comprehensive document. You are a star.
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DietTerriNick said:diet sheet
Hi Neil
Yes I did email you and you kindly sent me your diet info. I have taken a lot of it on board but Nick really does like milk and sugar in his tea. He is unhappy to lose milk, cheese, eggs and sugar although he is now looking at ways of reducing his intake of these. He was already a vegetarian but he does not eat fish at all and will not consider it. However we are now going for loads more vegetables, juices, smoothies and a lot of the supplements that you suggested i.e. Glutamine, Astragalus, Resveratol etc. Thank you so much for taking so much trouble to research and put together what is a really comprehensive document. You are a star.
Hi Terri,
I am very pleased you found it helpful. If Nick does not want to eat fish you might consider some other healthy vegatable sources of omega-3 poly unsaturated fats such as flax or chia seeds. It is extremely important that he get sufficient omega-3's and cut back on omega-6's.
Sugar in tea (only) is certainly not a problem. But if more sugar is desired, then adding more fiber at the same time will mitigate the (negative) metabolic consequences (insulin spikes). Eggs in moderation (cage free; antibodic free fed) are really not a problem either. Unfortunately, with milk and milk products there does not seem to be any path for compromising that I am aware of (yet).
Best wishes,
-Neil
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"MDX"TerriNick said:good news
Hi there Sorry to be dim but what do you mean by MDX?
MDX-1106 is the 'wonder drug' on which Fox is doing so brilliantly in a trial (many others are too). It was developed jointly by MeDareX in the US and Ono Pharmaceuticals in Japan.
When Bristol Myers Squibb (BMS) bought Medarex, they renamed it BMS 936558.
It has subsequently been given the generic name nivolumab, which is what it will be known as until it's on the market (we all hope asap) when doubtless BMS will give it a memorable brand name in the West and Ono something else in the 3 countries in which they have exclusive rights to market it.
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uhm....Texas_wedge said:"MDX"
MDX-1106 is the 'wonder drug' on which Fox is doing so brilliantly in a trial (many others are too). It was developed jointly by MeDareX in the US and Ono Pharmaceuticals in Japan.
When Bristol Myers Squibb (BMS) bought Medarex, they renamed it BMS 936558.
It has subsequently been given the generic name nivolumab, which is what it will be known as until it's on the market (we all hope asap) when doubtless BMS will give it a memorable brand name in the West and Ono something else in the 3 countries in which they have exclusive rights to market it.
MDX looks alot like FOX. Maybe a letter or 2 off. Coincidence? I don't think so. Terri, it is a newer drug in the trial phase. It helps the immune system search and destroy clear cell kidney tumors. Very promising and sought after. I was lucky and it was offered to me before I had heard of it. I am doing great because of it.
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dietNanoSecond said:Diet
Hi Terri,
I am very pleased you found it helpful. If Nick does not want to eat fish you might consider some other healthy vegatable sources of omega-3 poly unsaturated fats such as flax or chia seeds. It is extremely important that he get sufficient omega-3's and cut back on omega-6's.
Sugar in tea (only) is certainly not a problem. But if more sugar is desired, then adding more fiber at the same time will mitigate the (negative) metabolic consequences (insulin spikes). Eggs in moderation (cage free; antibodic free fed) are really not a problem either. Unfortunately, with milk and milk products there does not seem to be any path for compromising that I am aware of (yet).
Best wishes,
-Neil
Hi Neil
Thank you so much for this. We were both getting worried about sugar. I am going to our local health food shop tomorrow to get some fibre stuff, kelp and other bits and pieces. Nick started back on Sutent today and also his BP meds so I have now got him on the mushrooms, Turmeric, Vitamin B, Garlic tablet, Milk Thistle, Resveratrol etc.
BTW should he be taking the Resveratrol whilst on Sutent or only during the 2 week break? I have taken him off Astragalus as he is back on Sutent but wasn't sure about the others.
Also I have flaxseed oil but am not sure what to do with it? How much should he take each day? And how does he take it? Is it just swallowed neat or can it be added to a food? If so, what's the best way of delivery?
Thanks for all your help
Terri
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uhmfoxhd said:uhm....
MDX looks alot like FOX. Maybe a letter or 2 off. Coincidence? I don't think so. Terri, it is a newer drug in the trial phase. It helps the immune system search and destroy clear cell kidney tumors. Very promising and sought after. I was lucky and it was offered to me before I had heard of it. I am doing great because of it.
Hiya Fox
I've checked out MDX and wow that does look promising. How long does the trial have to go now? And how long before something like this is available to the average Joe? We are still new to all this so I have no idea how these trials and studies work or how long they take to get the new drugs to market, so to speak.
Terri
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DietTerriNick said:diet
Hi Neil
Thank you so much for this. We were both getting worried about sugar. I am going to our local health food shop tomorrow to get some fibre stuff, kelp and other bits and pieces. Nick started back on Sutent today and also his BP meds so I have now got him on the mushrooms, Turmeric, Vitamin B, Garlic tablet, Milk Thistle, Resveratrol etc.
BTW should he be taking the Resveratrol whilst on Sutent or only during the 2 week break? I have taken him off Astragalus as he is back on Sutent but wasn't sure about the others.
Also I have flaxseed oil but am not sure what to do with it? How much should he take each day? And how does he take it? Is it just swallowed neat or can it be added to a food? If so, what's the best way of delivery?
Thanks for all your help
Terri
Hi Terrie,
Glad to know you have found this helpful. But remember, do consult first with your oncologist and/or other doctors about any supplements you might decide to take. Show them my document if it will help them understand the rationale, etc.
I agree he should not take Astragalus while on Sutent. However, I have been taking Resveratrol while on Sutent with no noticeable effect. This is one you may have to experiment with. Although I note all the possible CYP3A4 enzyme interactions regarding these and other supplements - many of those findings are based on rather scanty evidence based on experiments only done in test tubes or with mice. Therefore the warnings may be more conservative than warranted (because mice are really very poor standins for humans).
As to flaxseed... I will have to do some more research. Since I consume lots of fish and seafood and also have no issue with taking fish oil supplements I do not know what vegans/vegetarians are doing to get sufficient omega-3's in their diet. Also, the kind of omega-3's in flax and other veggies are different from those in fish. In general I prefer to get all my nutrients from food first - supplements second (if necessary). But in the case of flaxseed I doubt you can get enough by just eating it - nor does it taste all that good.
In fact, just doing a quick check I came up with this:
http://www.webmd.com/heart-disease/news/20080912/flaxseed-oil-pills-vs-fish-oil-pills
Which, unfortunately, this tells me that flax oil supplements will NOT suffice after all. What you absolutely need are the omega-3's called EPA and DHA that come from marine animals. It sounds like they are only available in fish oil and not flax oil - but there may some other vegatable sources I just don't know about.
Unfortunately I am about to head off to attend a conference for the next few days. So I am afraid I won't be able to adequately delve into this question until I return.
-N
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DietNanoSecond said:Diet
Hi Terrie,
Glad to know you have found this helpful. But remember, do consult first with your oncologist and/or other doctors about any supplements you might decide to take. Show them my document if it will help them understand the rationale, etc.
I agree he should not take Astragalus while on Sutent. However, I have been taking Resveratrol while on Sutent with no noticeable effect. This is one you may have to experiment with. Although I note all the possible CYP3A4 enzyme interactions regarding these and other supplements - many of those findings are based on rather scanty evidence based on experiments only done in test tubes or with mice. Therefore the warnings may be more conservative than warranted (because mice are really very poor standins for humans).
As to flaxseed... I will have to do some more research. Since I consume lots of fish and seafood and also have no issue with taking fish oil supplements I do not know what vegans/vegetarians are doing to get sufficient omega-3's in their diet. Also, the kind of omega-3's in flax and other veggies are different from those in fish. In general I prefer to get all my nutrients from food first - supplements second (if necessary). But in the case of flaxseed I doubt you can get enough by just eating it - nor does it taste all that good.
In fact, just doing a quick check I came up with this:
http://www.webmd.com/heart-disease/news/20080912/flaxseed-oil-pills-vs-fish-oil-pills
Which, unfortunately, this tells me that flax oil supplements will NOT suffice after all. What you absolutely need are the omega-3's called EPA and DHA that come from marine animals. It sounds like they are only available in fish oil and not flax oil - but there may some other vegatable sources I just don't know about.
Unfortunately I am about to head off to attend a conference for the next few days. So I am afraid I won't be able to adequately delve into this question until I return.
-N
Three quick comments Neil.
1. Just you collar you-know-who at the conference and pin him to the wall until you get answers!
2. "mice are really very poor standins for humans" - I don't know, I know some humans they could do good jobs as stand-ins for! So, re 1. above, just ask yourself 'Am I a man or am I a mouse?' (and I won't take a squeak for an answer!
)3. It's worth noting that flaxseed is notoriously one of the foods that interacts significantly with large numbers of agents. Nonetheless, it's a supplement that I take every day.
Enjoy that conference and don't forget to take a stock of your new business cards.
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