Kidney, Thyroid, bone lesion...

PK_Chicago

Hi all - I'm 0 for three on CT scans!  My first one found the large tumor in my left kidney which resulted in a removal of the kidney and a large 14.5cm tumor (RCC - Chromophobic).  My first 6 month scan post surgery found nodules on my thyroid (unrelated) which resulted in the removal of my thyroid. My latest - one year post surgery - scan found a lesion in one of the bones of my pelvis.

They aren't sure what it is - as a follow-up to the CT scan - I'm having an MRI on March 16th....

Has anyone had metastasis to a bone?

I've a great fighter - but this has me worried a bit!

Thanks

 

 

 

NanoSecond

Mets

Hi PK,

I had a full radical nephrectomy after the discovery of an 11cm tumor in my left kidney in April 2010.

There was no spread and so I was declared NED (No visible Evidence of Disease) after the kidney was removed in May 2010.

Biopsy showed chromophobe histology, just like you.

I then had CT scans every 4 months after my surgery.  Each was one "clear" until this past July when lesions were found on my sacrum (base of my spine) and my left femur (thigh/hip).

Note: the only way to check for bone mets is to do a full-body nuclear bone scan. Don't settle for less. Even though an MRI may show what is on your pelvis (or may not) - you may still have bone mets elsewhere that you don't even know about.

The CT scan I had in July showed the mets on my sacrum. But we did not discover the mets on my left femur until we did the full body scan.

You should immediately start on Xgeva or Zometa to strengthen your skeleton if you have any bone lesions.  You will need to take a calcium supplement as well - to make sure there is sufficient calcium in your bloodstream for these drugs to work properly.

Are you under the care of an oncologist who is familiar with both bone mets and RCC?

If not, do consider doing so ASAP.

Best wishes,

 

-NanoSecond (Neil)

todd121

NanoSecond said:

Mets

Hi PK,

I had a full radical nephrectomy after the discovery of an 11cm tumor in my left kidney in April 2010.

There was no spread and so I was declared NED (No visible Evidence of Disease) after the kidney was removed in May 2010.

Biopsy showed chromophobe histology, just like you.

I then had CT scans every 4 months after my surgery.  Each was one "clear" until this past July when lesions were found on my sacrum (base of my spine) and my left femur (thigh/hip).

Note: the only way to check for bone mets is to do a full-body nuclear bone scan. Don't settle for less. Even though an MRI may show what is on your pelvis (or may not) - you may still have bone mets elsewhere that you don't even know about.

The CT scan I had in July showed the mets on my sacrum. But we did not discover the mets on my left femur until we did the full body scan.

You should immediately start on Xgeva or Zometa to strengthen your skeleton if you have any bone lesions.  You will need to take a calcium supplement as well - to make sure there is sufficient calcium in your bloodstream for these drugs to work properly.

Are you under the care of an oncologist who is familiar with both bone mets and RCC?

If not, do consider doing so ASAP.

Best wishes,

 

-NanoSecond (Neil)

Bone Lesion on CT

Just chiming in to agree. I had a small lesion on my right femur that they weren't sure about. My new RCC oncologist ordered another CT (I needed it anyway) and a full body nuclear bone scan as Neil said. He said the bone scan was needed to figure out if it was likely an RCC met or not. It didn't light up on the bone scan and hadn't changed since the previous ct 3 months earlier, so they decided it was not an RCC met. From what I read, bone scans catch something like 70% of these, and Pet scans might catch the ones that aren't caught by the bone scans. In my reading and discussions with the oncologist, I didn't see that an MRI would help at all in determining if the bone lesion was an RCC met or not.   Bone scan (preferable) and Pet scan were the follow up tests that the oncologists recommended.

My oncologist did mention they migh have to biopsy it if it was questionable. Didn't have to do that, thank goodness. He also mentioned the possiblity of resecting it if it could be gotten to (or radiation) if it turned out to be an RCC met.

Best of luck to you.

Todd

Texas_wedge

todd121 said:

Bone Lesion on CT

Just chiming in to agree. I had a small lesion on my right femur that they weren't sure about. My new RCC oncologist ordered another CT (I needed it anyway) and a full body nuclear bone scan as Neil said. He said the bone scan was needed to figure out if it was likely an RCC met or not. It didn't light up on the bone scan and hadn't changed since the previous ct 3 months earlier, so they decided it was not an RCC met. From what I read, bone scans catch something like 70% of these, and Pet scans might catch the ones that aren't caught by the bone scans. In my reading and discussions with the oncologist, I didn't see that an MRI would help at all in determining if the bone lesion was an RCC met or not.   Bone scan (preferable) and Pet scan were the follow up tests that the oncologists recommended.

My oncologist did mention they migh have to biopsy it if it was questionable. Didn't have to do that, thank goodness. He also mentioned the possiblity of resecting it if it could be gotten to (or radiation) if it turned out to be an RCC met.

Best of luck to you.

Todd

Chromophobe RCC

PK and Neil - I take it that neither of you has had any sarcomatous change? It doesn't seem to relate to tumor size.  Mine was already predominantly sarcomatoid (from chromophobe) at only 9 cm.  Each of you had much larger tumors but no sarcomatous change? You're quite a bit younger than I am so despite tumor sizes, you may have had it for less long.  It's difficult to know what precipitates sarcomatoid de-diff.  but it seems to be independent of tumor size though it could be related to patient age or tumor age?

Another matter that I find surprising is that without the sarcomatoid dimension chRCC seldom, it's said, metastasises but you both seem to be exceptions to that observation.  Has any comment been made as to why your chRCC might have done so?

 

NanoSecond

Texas_wedge said:

Chromophobe RCC

PK and Neil - I take it that neither of you has had any sarcomatous change? It doesn't seem to relate to tumor size.  Mine was already predominantly sarcomatoid (from chromophobe) at only 9 cm.  Each of you had much larger tumors but no sarcomatous change? You're quite a bit younger than I am so despite tumor sizes, you may have had it for less long.  It's difficult to know what precipitates sarcomatoid de-diff.  but it seems to be independent of tumor size though it could be related to patient age or tumor age?

Another matter that I find surprising is that without the sarcomatoid dimension chRCC seldom, it's said, metastasises but you both seem to be exceptions to that observation.  Has any comment been made as to why your chRCC might have done so?

 

Chromophobe RCC

Hi Tex,

When they did the biopsy on the lesions at the base of my spine (sacrum) there was no hint of sarcomatoid features. Nor were there any in the biopsy of my original 11cm tumor.

I agree that tumor size probably does not directly relate to what precipates sarcomatoid developing.  But I do think that age likely does have a big bearing.

I always try to keep in mind that our tumors are a personal in-house science project that demonstrates the power of evolution. Everything about cancer (to me) hinges around understanding how our "healthy" cell metabolism works and how it has evolved. It great success is based on "sophisticated" respiration (oxidation) that is highly energy efficient. But, in contrast, the mechanism of our tumor's metabolism has reverted back to the very primitive fermentation of glucose (similar to that of a yeast).  This is an extremely inefficient way of getting its energy. But that is also why it is so hard to eliminate.

So it is no surprise to realize that our tumors are still constantly evolving.  That is why the Sutent I am taking or the Votrient you are taking is bound to stop working someday...

Although we have chromophobe and it is "usually" very slow growing I was not aware that we were at that much less risk of having it metastasize - since it has been able to grow so large and for so long.  Even if the Furhman great is meaningless for us.

But as to what might trigger it to become more agressive or to then adopt sarcomatoid features - of course I don't know.  But my strategy has been to try to minimize the nutrients it wants (and greedily takes) in the hope that this may be one way to prevent that from happening.

Texas_wedge

NanoSecond said:

Chromophobe RCC

Hi Tex,

When they did the biopsy on the lesions at the base of my spine (sacrum) there was no hint of sarcomatoid features. Nor were there any in the biopsy of my original 11cm tumor.

I agree that tumor size probably does not directly relate to what precipates sarcomatoid developing.  But I do think that age likely does have a big bearing.

I always try to keep in mind that our tumors are a personal in-house science project that demonstrates the power of evolution. Everything about cancer (to me) hinges around understanding how our "healthy" cell metabolism works and how it has evolved. It great success is based on "sophisticated" respiration (oxidation) that is highly energy efficient. But, in contrast, the mechanism of our tumor's metabolism has reverted back to the very primitive fermentation of glucose (similar to that of a yeast).  This is an extremely inefficient way of getting its energy. But that is also why it is so hard to eliminate.

So it is no surprise to realize that our tumors are still constantly evolving.  That is why the Sutent I am taking or the Votrient you are taking is bound to stop working someday...

Although we have chromophobe and it is "usually" very slow growing I was not aware that we were at that much less risk of having it metastasize - since it has been able to grow so large and for so long.  Even if the Furhman great is meaningless for us.

But as to what might trigger it to become more agressive or to then adopt sarcomatoid features - of course I don't know.  But my strategy has been to try to minimize the nutrients it wants (and greedily takes) in the hope that this may be one way to prevent that from happening.

Management plan

That seems like an excellent strategy, which I also subscribe to (but am applying less fastidiously than you are, which makes your n = 1 trial all the more valuable and interesting to me). 

As you know, the other big plank for me (aside, of course, from the care of my splendid MDT) is exercise which I conceive to be a very significant metabolic factor.

PK_Chicago

Texas_wedge said:

Management plan

That seems like an excellent strategy, which I also subscribe to (but am applying less fastidiously than you are, which makes your n = 1 trial all the more valuable and interesting to me). 

As you know, the other big plank for me (aside, of course, from the care of my splendid MDT) is exercise which I conceive to be a very significant metabolic factor.

Kidney, Thyroid, bone lesion...

Great to hear from all of you - that's what's great about these boards!  I've spent the last year trying to "be normal" again - but each scan is a small setback.  What kind of plan are you on as far as excersise and diet?

I will find out about the bone scan - I don't have a specific oncologist yet - seeing that I've never needed further treatment.

 

PK

Texas_wedge

PK_Chicago said:

Kidney, Thyroid, bone lesion...

Great to hear from all of you - that's what's great about these boards!  I've spent the last year trying to "be normal" again - but each scan is a small setback.  What kind of plan are you on as far as excersise and diet?

I will find out about the bone scan - I don't have a specific oncologist yet - seeing that I've never needed further treatment.

 

PK

Exercise and diet

Very briefly:  diet aspires to something broadly similar to Neil's, but a little less restrictive.

On the exercise front, the aim is to carry out a good amount of steady rate activity plus an adequate amount of high intensity training.  

Ideally, I would run, at least the London Marathon, again but I fear that arthritis and cancer treatment have put paid to my doing much running these days - might see how I feel when the weather improves.  I have a lot of gym machines and weights at home so I make,  regrettably rather sporadic, use of an elliptical cross-trainer for 'running' on. 

At the moment my main exercise vehicles are playing as many rounds of golf a week as the weather permits and using my rowing machine for a mixture of lsd (long slow distance) work and high intensity interval training.  All my life I've found I need plenty of exercise and feel a whole lot better when I get it than when I don't.  There is a lot of evidence about the value of exercise - activity, sport - not necessarily workouts in a gym, for cancer patients, before, during and after treatment.

NanoSecond

PK_Chicago said:

Kidney, Thyroid, bone lesion...

Great to hear from all of you - that's what's great about these boards!  I've spent the last year trying to "be normal" again - but each scan is a small setback.  What kind of plan are you on as far as excersise and diet?

I will find out about the bone scan - I don't have a specific oncologist yet - seeing that I've never needed further treatment.

 

PK

Diet

Hi PK,

I have prepared a .pdf document that is (now) 60 pages long explaining the science and rationale behind the diet I follow (plus the choice of certain supplements).  It is still a work in progress.

I am happy to email you (or anyone else interested) a copy if you contact me at: n.feldman@videopost.com

Even if you don't plan on joining my n=1 clinical trial you will find lots of food for thought. Pun intended.

Best wishes,

 

-NanoSecond (Neil)

PK_Chicago

What is the usual treatment

What is the usual treatment for a bone lesion as I've described?

 

PK

NanoSecond

PK_Chicago said:

What is the usual treatment

What is the usual treatment for a bone lesion as I've described?

 

PK

Treatment

Hi PK,

At the very least, and as soon as possible, you should start on either Xgeva (Denosumab) or Zometa (Zoledronic Acid).  These drugs are designed to stregthen your skeleton.  They take calcium out of your bloodstream and direct it into your bones.  So you will also have to take a calcium supplement to make sure there is sufficient calcium in your system.  If you do, don't purchase capsules or tablets that contain calcium carbonate. Even though these are the most common and the cheapest - the gut does not absorb calcium in this form.  Rather look for supplements that are made of calcium citrate or calcium ascorbate or calcium hydroxyapatite.  It is a great idea to get a version that also has some magnesium included. Most of us are deficient in magnesium and this mineral provides lots of benefits for cancer sufferers.  However, it is not recommended if you have any kidney disease.

Of the two drugs, I prefer (and take) Xgeva.  This is because it does not strain the kidney at all (Zometa can - and so your kidney function has to be monitored) and it is given once a month as a shot.  Also, it can work faster than Zometa. Recently it was shown to be more effective for long-term survival - at least for metastatic lung cancer patients:

http://www.ncbi.nlm.nih.gov/pubmed/?term=23154554

TITLE: Overall survival improvement in patients with lung cancer and bone metastases treated with denosumab versus zoledronic acid: subgroup analysis from a randomized phase 3 study.

CONCLUSION: In this exploratory analysis, denosumab was associated with improved overall survival compared with ZA, in patients with metastatic lung cancer.

Either of these drugs will work fine, however.  The downside: both of these drugs increase the risk of ONJ (Osteonecrosis of the Jaw). Especially if any extractions are anticipated.

After that it will be up to you and your oncologist to decide just which therapy might be most appropriate for you.

Best wishes,

-NanoSecond (Neil)