Qustion about Human growth hormone treatment

rnayriv

Other than having Kidney cancer last year I've had allot of other health issues. Well after many many test they finally found out that one of my many problems is I have a growth hormone deficiency. Well there is treatment for this which is replacing them with daily injections. My question is it if anyone knows of this and am I crazy for going through with it. My endocrinologist thinks it may be risky since I had Kidney cancer because it makes cells grow good and bad ones. I told him that I was told that all my cancer was removed and he said no one is 100% positive that it is. I finally had come to a place of not being scared and now he has me wondering if I should go though with the treatment. I was stage 1 grade 1 so everyone has told me that I'm cancer free and my chances of recurrence is zero so now I'm just confused. Any opinions or advice about this.

Texas_wedge

Growth hormone

It's your call but in your shoes I would go ahead with the treatment (assuming you are going to get real benefit from it). 

No-one can cover all the bases these days and it seems clear that your endocrinologist knows next to nothing about RCC.

It's true that you don't know whether you will have RCC in the future but that would have been true even without your having already had it!  The odds on that occurring haven't been changed much by a very small (and now removed) tumor.  What's for sure is that the growth hormone isn't going to give you cancer.  If you do still have traces of viable cancer in your body, it might conceivably stimulate it, but no-one knows that. 

You almost certainly no longer have cancer and you will be monitored to ensure that if that ceases to be the case it will be picked up immediately.

I think it would be crazy to forgo treatment that will definitelydo you good on the basis that it's unknown whether it might do you a harm that could, in any case, be effectively handled. 

icemantoo

Short is good

May,

 

I know nothing about human growth hormone other than my wife said she refused it for the kids. My wife used to be (in her taller days) 4" 9 and 3/4 inches tall. Now as she approaches 70 she is only 4' 9'  which is plenty tall for me. I even think short girls are cute.

 

 

 

Icemantoo

 

NanoSecond

Another opinion

First off, please understand that I am only acting as a messenger - I certainly do not wish to scare or confuse you unduly or any further.  However, in a situation like this you really do need some facts.

Here is a rather dated study.  Tex will probably object to the fact that am willing to dig into "ancient history" - regardless, this is a relevant paper:

"Cancer risk following growth hormone use in childhood: implications for current practice.

The therapeutic use of growth hormone (GH) has caused concern, as it is anabolic and mitogenic, and its effector hormone, insulin-like growth factor (IGF)-I is anti-apoptotic. As both hormones can cause proliferation of normal and malignant cells, the possibility that GH therapy may induce cancer, increase the risk of tumour recurrence in those previously treated for a malignancy, or increase the risk of cancer in those with a predisposition, has resulted in concerns over its use. There are theoretical and epidemiological reasons that suggest GH and IGF-I may be important in tumour formation and proliferation..."

http://www.ncbi.nlm.nih.gov/pubmed/15144231

And, anticipating Tex's history objection - here is a more recent (but less scholarly) article:

"Suppression of human growth hormone may ward off cancer, diabetes

A study of a population with a genetic mutation that shuts off receptors to HGH finds they almost never get cancer or diabetes, suggesting a downside for people taking the hormone as an anti-aging treatment."

http://articles.latimes.com/2011/feb/16/health/la-he-growth-hormone-aging-20110217

 

I personally go to very great lengths to avoid the possible generation of IGF-1 (Insulin-like Growth Factor-1) mentioned in the first paper.  I do this by paying close attention to my diet - specifically avoiding anything that can cause my Insulin levels to spike up (IGF-1 always accompanies Insulin spikes). One can do this most effectively by avoiding excess sugar(s) and high glycemic index carbohydrates (i.e. white bread; white flour; white rice; etc.) and adding sufficient fiber to one's diet.

My main point here is to question the idea that taking HGH will "do no harm".  The anwer is that is not known at all.  On the contrary it would seem that if you have a deficiency of HGH you may very well be at an advantage in fighting the return of RCC or other cancers.

[Sorry to be at odds with you yet again, Tex.  But I really can't let this one go unchallenged.]

jimpeg

Human Growth Hormone

You very well may have had a surgical cure - it is likely that you did - but we wanted to share with you that your endo's concerns make good sense to us. Jim is 15 years out for RCC- the 1st 5 yrs he was NED  but has had 2 returns each after 5 yeras of clean scans. RCC is somewhat unique as it can grow slowly and show up many years later. With the last return it again  took 5 yrs to show as a  few cells had survived Jim's HDIL2 treatment. There are patients (not a lot ) who have been NED for over 12 -15 years and then it shows up. The pancreas is one organ that shows mets much later than other organs  on scans. We are not trying to scare you - you were a stage 1 and surg. most certainly can cure RCC - if it gets it all - and there are no random sleeper cells. But you are young and have many years ahead of you. Is it medically necessary that you take this - or is this for height? Perhaps you should speak with an RCC expert. Urologists are surgeons and they often continue the follow up's unless there is a return and then they refer to an oncologist. All oncolgists are not RCC experts. Where do you reside? An expert  RCC oncologist may have thoughts on this as well. Clearly you are thinking this over carefully as you have posted about  it. We would never  tell anyone what to do-  but we put life before anything else. Jim is also a prostate cancer survivor. He is tall, slim, never smoked, ate healthy andwas  DX'd with RCC cancer at 53 and prostate at 55. The prostate cancer was aggresive but so far (12 yrs out) hopefully was a surgical cure - but RCC  lurked in the background - with sleeper cells - on several occasions and we just wanted to share that with you as you make such an imortant decision.

Peggy & Jim

rnayriv

I will definitely benefit

I will definitely benefit from treatment as I live in bed most days of my life now. I suffer from extreme fatigue and muscle weakness, bad memory and many more problems. So yes I would be having better quality of life from treatment. I told the doctor that by chance if any cells where left behind that I'm being scanned regularly and it would be picked up as soon as it showed up. My height has nothing to do with it my health does. The doc just got me second guessing my decision to go forward with treatment.

 

rnayriv

Texas_wedge said:

Growth hormone

It's your call but in your shoes I would go ahead with the treatment (assuming you are going to get real benefit from it). 

No-one can cover all the bases these days and it seems clear that your endocrinologist knows next to nothing about RCC.

It's true that you don't know whether you will have RCC in the future but that would have been true even without your having already had it!  The odds on that occurring haven't been changed much by a very small (and now removed) tumor.  What's for sure is that the growth hormone isn't going to give you cancer.  If you do still have traces of viable cancer in your body, it might conceivably stimulate it, but no-one knows that. 

You almost certainly no longer have cancer and you will be monitored to ensure that if that ceases to be the case it will be picked up immediately.

I think it would be crazy to forgo treatment that will definitelydo you good on the basis that it's unknown whether it might do you a harm that could, in any case, be effectively handled. 

Thank you for your input I

Thank you for your input I really appreciate it.

rnayriv

NanoSecond said:

Another opinion

First off, please understand that I am only acting as a messenger - I certainly do not wish to scare or confuse you unduly or any further.  However, in a situation like this you really do need some facts.

Here is a rather dated study.  Tex will probably object to the fact that am willing to dig into "ancient history" - regardless, this is a relevant paper:

"Cancer risk following growth hormone use in childhood: implications for current practice.

The therapeutic use of growth hormone (GH) has caused concern, as it is anabolic and mitogenic, and its effector hormone, insulin-like growth factor (IGF)-I is anti-apoptotic. As both hormones can cause proliferation of normal and malignant cells, the possibility that GH therapy may induce cancer, increase the risk of tumour recurrence in those previously treated for a malignancy, or increase the risk of cancer in those with a predisposition, has resulted in concerns over its use. There are theoretical and epidemiological reasons that suggest GH and IGF-I may be important in tumour formation and proliferation..."

http://www.ncbi.nlm.nih.gov/pubmed/15144231

And, anticipating Tex's history objection - here is a more recent (but less scholarly) article:

"Suppression of human growth hormone may ward off cancer, diabetes

A study of a population with a genetic mutation that shuts off receptors to HGH finds they almost never get cancer or diabetes, suggesting a downside for people taking the hormone as an anti-aging treatment."

http://articles.latimes.com/2011/feb/16/health/la-he-growth-hormone-aging-20110217

 

I personally go to very great lengths to avoid the possible generation of IGF-1 (Insulin-like Growth Factor-1) mentioned in the first paper.  I do this by paying close attention to my diet - specifically avoiding anything that can cause my Insulin levels to spike up (IGF-1 always accompanies Insulin spikes). One can do this most effectively by avoiding excess sugar(s) and high glycemic index carbohydrates (i.e. white bread; white flour; white rice; etc.) and adding sufficient fiber to one's diet.

My main point here is to question the idea that taking HGH will "do no harm".  The anwer is that is not known at all.  On the contrary it would seem that if you have a deficiency of HGH you may very well be at an advantage in fighting the return of RCC or other cancers.

[Sorry to be at odds with you yet again, Tex.  But I really can't let this one go unchallenged.]

Thank you for all your input

Thank you for all your input and info. This is a really hard descison for me  to make.

rnayriv

jimpeg said:

Human Growth Hormone

You very well may have had a surgical cure - it is likely that you did - but we wanted to share with you that your endo's concerns make good sense to us. Jim is 15 years out for RCC- the 1st 5 yrs he was NED  but has had 2 returns each after 5 yeras of clean scans. RCC is somewhat unique as it can grow slowly and show up many years later. With the last return it again  took 5 yrs to show as a  few cells had survived Jim's HDIL2 treatment. There are patients (not a lot ) who have been NED for over 12 -15 years and then it shows up. The pancreas is one organ that shows mets much later than other organs  on scans. We are not trying to scare you - you were a stage 1 and surg. most certainly can cure RCC - if it gets it all - and there are no random sleeper cells. But you are young and have many years ahead of you. Is it medically necessary that you take this - or is this for height? Perhaps you should speak with an RCC expert. Urologists are surgeons and they often continue the follow up's unless there is a return and then they refer to an oncologist. All oncolgists are not RCC experts. Where do you reside? An expert  RCC oncologist may have thoughts on this as well. Clearly you are thinking this over carefully as you have posted about  it. We would never  tell anyone what to do-  but we put life before anything else. Jim is also a prostate cancer survivor. He is tall, slim, never smoked, ate healthy andwas  DX'd with RCC cancer at 53 and prostate at 55. The prostate cancer was aggresive but so far (12 yrs out) hopefully was a surgical cure - but RCC  lurked in the background - with sleeper cells - on several occasions and we just wanted to share that with you as you make such an imortant decision.

Peggy & Jim

Thank you for your input I

Thank you for your input I truly appreciate it. My urologist/surgeon thinks I don't need any follow up treatment. He thinks I'm cured and just need to move on. My next visit with him will probably be my last. I'm requesting to be seen by someone else. Him and I don't really see eye to eye. So he would be no help to this situation.

NanoSecond

rnayriv said:

I will definitely benefit

I will definitely benefit from treatment as I live in bed most days of my life now. I suffer from extreme fatigue and muscle weakness, bad memory and many more problems. So yes I would be having better quality of life from treatment. I told the doctor that by chance if any cells where left behind that I'm being scanned regularly and it would be picked up as soon as it showed up. My height has nothing to do with it my health does. The doc just got me second guessing my decision to go forward with treatment.

 

Question

Are you presently taking any statins?

 

rnayriv

NanoSecond said:

Question

Are you presently taking any statins?

 

Not yet

No not yet. I'm waiting on the insurance company right now.  I guess It has to be a specialty pharmacy and then a nurse has to come out and teach me how to do the injections.

NanoSecond

rnayriv said:

Not yet

No not yet. I'm waiting on the insurance company right now.  I guess It has to be a specialty pharmacy and then a nurse has to come out and teach me how to do the injections.

Injections?

Were you referring to how you will take your HGH? Or to statins?  Statins are drugs (such as Lipitor or Simvastatin) that are taken orally and are given to help lower one's cholesterol numbers.

I only asked because the generalized symptoms that you mentioned (fatigue, depression, muscle aches, lack of ability to focus, etc.) perfectly describe a common syndrome that many statin-takers suffer from (in varying degrees). One of the primary reasons for this is because an important metabolic enzyme, called Coenzyme Q10, is lowered whenever you take them.  CoQ10 levels also slowly and naturally drop as we age.  Regardless, if there is insufficient CoQ10 in your system you may suffer from lack of energy and other related ailments.

Texas_wedge

NanoSecond said:

Another opinion

First off, please understand that I am only acting as a messenger - I certainly do not wish to scare or confuse you unduly or any further.  However, in a situation like this you really do need some facts.

Here is a rather dated study.  Tex will probably object to the fact that am willing to dig into "ancient history" - regardless, this is a relevant paper:

"Cancer risk following growth hormone use in childhood: implications for current practice.

The therapeutic use of growth hormone (GH) has caused concern, as it is anabolic and mitogenic, and its effector hormone, insulin-like growth factor (IGF)-I is anti-apoptotic. As both hormones can cause proliferation of normal and malignant cells, the possibility that GH therapy may induce cancer, increase the risk of tumour recurrence in those previously treated for a malignancy, or increase the risk of cancer in those with a predisposition, has resulted in concerns over its use. There are theoretical and epidemiological reasons that suggest GH and IGF-I may be important in tumour formation and proliferation..."

http://www.ncbi.nlm.nih.gov/pubmed/15144231

And, anticipating Tex's history objection - here is a more recent (but less scholarly) article:

"Suppression of human growth hormone may ward off cancer, diabetes

A study of a population with a genetic mutation that shuts off receptors to HGH finds they almost never get cancer or diabetes, suggesting a downside for people taking the hormone as an anti-aging treatment."

http://articles.latimes.com/2011/feb/16/health/la-he-growth-hormone-aging-20110217

 

I personally go to very great lengths to avoid the possible generation of IGF-1 (Insulin-like Growth Factor-1) mentioned in the first paper.  I do this by paying close attention to my diet - specifically avoiding anything that can cause my Insulin levels to spike up (IGF-1 always accompanies Insulin spikes). One can do this most effectively by avoiding excess sugar(s) and high glycemic index carbohydrates (i.e. white bread; white flour; white rice; etc.) and adding sufficient fiber to one's diet.

My main point here is to question the idea that taking HGH will "do no harm".  The anwer is that is not known at all.  On the contrary it would seem that if you have a deficiency of HGH you may very well be at an advantage in fighting the return of RCC or other cancers.

[Sorry to be at odds with you yet again, Tex.  But I really can't let this one go unchallenged.]

"I will definitely benefit"

Neil, I'm going to take the risk that someone who doesn't understand you and me will think we're at daggers drawn if we disagree about anything,  and so I'll venture to say that I think you're being a bit naughty again!

Firstly, no one has suggested that taking HGH can't do harm - least of all me, who has warned about it for many years.  Some of us, of my antiquity, have followed the debates about HGH for many, many years, particularly in view of the bogus claims made about it among anti-ageing snake-oil purveyors. 

Also, as you might guess, as a life-long student of diet, nutrition, exercise physiology and strength athletics, I've followed the arguments among weight-lifters and body-builders for donkey's years about the abuse of HGH, and anabolic steroids, for supposed performance improvement.   There's a fair enough brief treatment of the divide between improper and dangerous use of HGH and legitimate use ( e.g. when prescribed by doctors for purposes for which it is FDA approved) at:

http://www.webmd.com/fitness-exercise/human-growth-hormone-hgh

As you'll see, you really can't say:  "The anwer is that is not known at all."  A lot is known, by now, about both the benefits and the potential harm of HGH.

Turning now to the couple of items you've cited, I hope you can agree that the "less scholarly" little bit in a local newspaper of two years ago is laughable, with its reference to some speculative investigation into a family of Ecuadorean dwarves with such a wealth of possible explanations as to make any interpretation meaningless.  

However, what is astonishing is that you cite this as more recent!!!  The article was in 2011 but the investigation goes back somewhat further! The article actually states:

"The researchers collected health histories of 99 patients over age 10 and death statistics of 53 other Ecuadoreans with Laron who died before Guevara-Aguirre began his work in the 1980s"  The analysis may be of comparatively recent times but the data certainly aren't.

I think an 'Oops' is in order?  That's not an example of what I would call 'recent' and certainly not when you compare it with the 'older' study you quote, which is from 2004!  [The abstract doesn't actually detail the period over which the studies analysed took place.]

I knew that the academic study you quoted would be of reputable provenance as soon as I saw the 'u' in tumour! [private joke between Neil and myself, folks]  I'm very happy to see you cite that study from Addenbrooke's which completely supports the view I expressed!

The first thing to note is that it was in the paediatric domain - not so relevant to mayriv!  However, it confirms the conclusion I arrived at, anyway.  I think it was naughty of you to quote only the passage in which the authors explain why they they conducted the investigation but not their actual findings, e.g.

"Even in children with a primary diagnosis of cancer, subsequent GH use does not appear to increase the risk of tumour recurrence."

This was a survey of studies, from which the authors don't suggest that HGH shouldn't be taken.  On the contrary, they assume it will and conclude:

"These studies emphasise the importance of continued surveillance."

 

Finally, do remember that the topic here isn't your diet (which is a fascinating subject, of interest to us all) but the decision mayriv needs to take for her own health. 

I had taken for granted that a lady in her 40s wasn't looking to take HGH to try to become taller!  I also assumed that she has very strong reasons for considering it and that her current state of health and quality of life is such as to make it a very serious issue.  She has now explained and confirmed that that is most definitely the case.

Taking everything into consideration, I feel sure that the decision is a no-brainer and that my (unqualified, but considered and sincere)

advice at the top of this thread was correct. 

However it turns out, mayriv, you can be sure that we all (not least Neil and myself) feel sorry that you are in this quandary and we all hope that life will improve for you as soon as possible.

I'm personally interested to hear what your urologist/oncologist has to say.  You certainly want to get input from experts and not just your companions here!  Please keep us posted.

 

 

Texas_wedge

NanoSecond said:

Injections?

Were you referring to how you will take your HGH? Or to statins?  Statins are drugs (such as Lipitor or Simvastatin) that are taken orally and are given to help lower one's cholesterol numbers.

I only asked because the generalized symptoms that you mentioned (fatigue, depression, muscle aches, lack of ability to focus, etc.) perfectly describe a common syndrome that many statin-takers suffer from (in varying degrees). One of the primary reasons for this is because an important metabolic enzyme, called Coenzyme Q10, is lowered whenever you take them.  CoQ10 levels also slowly and naturally drop as we age.  Regardless, if there is insufficient CoQ10 in your system you may suffer from lack of energy and other related ailments.

Injections

Neil, mayriv said in her first post above that she is about to take HGH injections expressly for her diagnosed HGH deficiency. 

(Incidentally, that is one of the  FDA approved reasons for taking it - to redress a constitutional failure to produce enough.)

Texas_wedge

Texas_wedge said:

Injections

Neil, mayriv said in her first post above that she is about to take HGH injections expressly for her diagnosed HGH deficiency. 

(Incidentally, that is one of the  FDA approved reasons for taking it - to redress a constitutional failure to produce enough.)

HGH decision

Just to reinforce the case for this replacement therapy for mayriv, I'd like to quote from a 2006 study entitled

Does growth hormone cause cancer?

from the endocrinology dept. at Bart's, London:

"extensive studies of the outcome of GH replacement in childhood cancer survivors show no evidence of an excess of de novo cancers, and more recent surveillance of children and adults treated with GH has revealed no increase in observed cancer risk."

"Finally, even if GH/IGF-1 therapy does result in a small increase in cancer risk compared to untreated patients with GH deficiency, it is likely that the eventual risk will be the same as the general population. Such a restoration to normality will need to be balanced against the known morbidity of untreated GH deficiency." [My emphasis]

That seems to me to say it all, for mayriv, who might want to point it out to her endocrinologist.

rnayriv

Texas_wedge said:

HGH decision

Just to reinforce the case for this replacement therapy for mayriv, I'd like to quote from a 2006 study entitled

Does growth hormone cause cancer?

from the endocrinology dept. at Bart's, London:

"extensive studies of the outcome of GH replacement in childhood cancer survivors show no evidence of an excess of de novo cancers, and more recent surveillance of children and adults treated with GH has revealed no increase in observed cancer risk."

"Finally, even if GH/IGF-1 therapy does result in a small increase in cancer risk compared to untreated patients with GH deficiency, it is likely that the eventual risk will be the same as the general population. Such a restoration to normality will need to be balanced against the known morbidity of untreated GH deficiency." [My emphasis]

That seems to me to say it all, for mayriv, who might want to point it out to her endocrinologist.

Thanks

Thank you Texas for explaining it for me and for all the info. I really do appreciate it. I really feel the benefits outweigh the risk. The doctor just had me second guessing my decision. I will still talk it over with my Urololgist even thogh I don't think it will matter to him one way or the other.

 

NanoSecond

rnayriv said:

Thanks

Thank you Texas for explaining it for me and for all the info. I really do appreciate it. I really feel the benefits outweigh the risk. The doctor just had me second guessing my decision. I will still talk it over with my Urololgist even thogh I don't think it will matter to him one way or the other.

 

Good decision

Well first off, I think Tex has fairly made his point(s) and so wins the debate.  So, yes, I am willing to offer an "oopps" to settle the matter.

All I hoped to do was give some "balance" to the an opposing viewpoint.  I think that was achieved.

In the end I also concur.  Since, after considering all the pros and cons, you feel that the benefits outweigh the risk, you are making the best (and correct) decision.

Further discussion with your Urologist is not a bad idea either.

 

[Still, I do hope that at least one of these days I will get to win one of our little "debates" yet, Tex.] 

 

Texas_wedge

NanoSecond said:

Good decision

Well first off, I think Tex has fairly made his point(s) and so wins the debate.  So, yes, I am willing to offer an "oopps" to settle the matter.

All I hoped to do was give some "balance" to the an opposing viewpoint.  I think that was achieved.

In the end I also concur.  Since, after considering all the pros and cons, you feel that the benefits outweigh the risk, you are making the best (and correct) decision.

Further discussion with your Urologist is not a bad idea either.

 

[Still, I do hope that at least one of these days I will get to win one of our little "debates" yet, Tex.] 

 

Good decision

Let's hope it does the trick in improving mayrivv's quality of life and that we get to hear good news from her before long.

We agree that HGH can be abused and used when it's not medically appropriate - e.g. by body-builders and those desperate enough to try any thing that some huckster claims to be "anti-ageing".

RIDER

I'd like to put down a rider here for anyone who could misinterpret Neil's sporting remark about 'our little "debates" '.  We're both keen to offer what help we can to any of our fellow members on the forum, but we also thoroughly enjoy the cut and thrust of debate.  Not long ago Neil generously said that he values my inputs relating to his postings, to 'keep him honest'. I'm glad to continue to try to do so - for a very good reason.  I consider what Neil is doing, in his researches and his n=1 trial, to be far too important to be ignored and also far too important not to try to understand, explore, evaluate and critique.  When we disagree and pursue a point of difference it's because of a shared regard for arriving at the best possible answer.

Some of us are here purely to get and give support. Some of us, like Neil and myself, are keen to delve into the science and try to bring information on board about progress we see going on. That is also a worthwhile role and I'm very happy to see others, for instance BDS, joining in that enterprise.  The more we can each learn, the better for all.

 

Texas_wedge

Texas_wedge said:

Good decision

Let's hope it does the trick in improving mayrivv's quality of life and that we get to hear good news from her before long.

We agree that HGH can be abused and used when it's not medically appropriate - e.g. by body-builders and those desperate enough to try any thing that some huckster claims to be "anti-ageing".

RIDER

I'd like to put down a rider here for anyone who could misinterpret Neil's sporting remark about 'our little "debates" '.  We're both keen to offer what help we can to any of our fellow members on the forum, but we also thoroughly enjoy the cut and thrust of debate.  Not long ago Neil generously said that he values my inputs relating to his postings, to 'keep him honest'. I'm glad to continue to try to do so - for a very good reason.  I consider what Neil is doing, in his researches and his n=1 trial, to be far too important to be ignored and also far too important not to try to understand, explore, evaluate and critique.  When we disagree and pursue a point of difference it's because of a shared regard for arriving at the best possible answer.

Some of us are here purely to get and give support. Some of us, like Neil and myself, are keen to delve into the science and try to bring information on board about progress we see going on. That is also a worthwhile role and I'm very happy to see others, for instance BDS, joining in that enterprise.  The more we can each learn, the better for all.

 

jimpeg

I'd like to welcome Peggy and Jim on to the forum and express the hope that they will enjoy what's on offer here which has a different flavour and, though less scholarly than some other forums, is a friendly place to be, with a large bunch of good and likeable folks.

NanoSecond

Texas_wedge said:

Good decision

Let's hope it does the trick in improving mayrivv's quality of life and that we get to hear good news from her before long.

We agree that HGH can be abused and used when it's not medically appropriate - e.g. by body-builders and those desperate enough to try any thing that some huckster claims to be "anti-ageing".

RIDER

I'd like to put down a rider here for anyone who could misinterpret Neil's sporting remark about 'our little "debates" '.  We're both keen to offer what help we can to any of our fellow members on the forum, but we also thoroughly enjoy the cut and thrust of debate.  Not long ago Neil generously said that he values my inputs relating to his postings, to 'keep him honest'. I'm glad to continue to try to do so - for a very good reason.  I consider what Neil is doing, in his researches and his n=1 trial, to be far too important to be ignored and also far too important not to try to understand, explore, evaluate and critique.  When we disagree and pursue a point of difference it's because of a shared regard for arriving at the best possible answer.

Some of us are here purely to get and give support. Some of us, like Neil and myself, are keen to delve into the science and try to bring information on board about progress we see going on. That is also a worthwhile role and I'm very happy to see others, for instance BDS, joining in that enterprise.  The more we can each learn, the better for all.

 

Rider

Thanks Tex.  I could not have summed it up better myself.  I truly rely on your "keeping me honest" because, as you say, my only goal here (like yours) is to offer some helpful advice. I look forward and enjoy our little give and take - and have always learned something useful from it. And yes, I would fully encourage others to join in our discussions if they are so inclined.

I only wish I could offer you much more practical advice in helping to deal with your form of chromophobe RCC. 

jimpeg

rnayriv said:

Thank you for your input I

Thank you for your input I truly appreciate it. My urologist/surgeon thinks I don't need any follow up treatment. He thinks I'm cured and just need to move on. My next visit with him will probably be my last. I'm requesting to be seen by someone else. Him and I don't really see eye to eye. So he would be no help to this situation.

HGH & uro/surg

Best to consult an RCC (not general) oncologist for follow up and perhaps advice on the topic of HGH. Your endorcronologist would be very aware as to your true need and he is cautioning you against tkg them -  he is thinking ahead with this. He sounds like a seasoned pro who cares about his patients  beyond the time they are in his office.  if you can avoid the HGC - we feel that would be wise to do - unless needed medically. Jim takes hydo cortisone and hydo/ flud. as he lost his 1st adrenal with the RCC surg 15 yrs ago (turns out it was clear of any maligancy) and 2 yrs ago he lost the remiaing adrenal as there was a re-growthin that organ 5 yrs after HDIL2. We would prefer that he not need this-  but  he now has no adrenals & we have no choice.  He takes just  a replacement dose.  Even then - we have figured out - by addinga bit more  sea salt  to his diet (he used little before with 1 kidney) that we can keep his blood pressure up with less meds.