My first post looking for some guidance please

stevfrog

Diagnosed with kidney cancer (clear cell) in 2003 and had a radical nephrectomy (7cm tumour)

I had no further treatment except regular scans until June 2011 when I had a 1.5cm tumour (Fuhrman grade 2) removed from my left lung.

 December 2012 my scan showed a solitary enlarged lymph node in my chest 1.2cm but this has remained unchanged.

January this year 2014 I was diagnosed with a lytic bone lesion in my spine L2 (no other areas) this was treated with 12 fractions of radiotherapy 36gy  rapid arc not stereotactic.

 

Could someone advise on what would be a possible next stage of treatment  for me and whether radiotherapy was a good idea, being that  kidney cancer is so radio resistant .

NanoSecond

Guidance

It is true that renal cancer is generally resistant to radiation but it is only a generalization.  Some mets will easily respond; others will not. 

Once anyone shows bone mets it is my belief they should start taking either Xgeva (Denosumab) or Zometa (Zoledronic Acid).  These agents can help prevent future bone metastases.

Although it appears that you may be NvED via surgery/radiation only eventually you may need to consider some sort of systemic therapy if you develop any new mets or if that lymph node starts to progress.

Are you under the care of an oncologist who is experienced with renal cell carcinoma?

foxhd

Amazing how long renal cell mets can hide in dormancy. I hope Dsfrey reads this. Stevfrog, radiation has been effective for bone mets. It is a far better alternative than removing vertebrae or femurs, or humerous'. I've had radiation with good results. (so far). I think that you are thinking that the L2 site is where the mets are coming from. Just not so. The primary site was your kidney. Cells managed to travel via blood or lymphphatics. They tend to like bones and lungs to set up shop. Even years later. I'm glad you've been watched carefully and have good care.

stevfrog

Guidance

I  see an oncologist.

 I do have an infusion of Zoldronic acid every month and will be seeing my oncologist in May.

Should I be pressing for some kind of systemic therapy now or wait for something else to manifest, if so what form should this take il2, Sutent etc ?

 

Thanks Nano.

NanoSecond

stevfrog said:

Guidance

I  see an oncologist.

 I do have an infusion of Zoldronic acid every month and will be seeing my oncologist in May.

Should I be pressing for some kind of systemic therapy now or wait for something else to manifest, if so what form should this take il2, Sutent etc ?

 

Thanks Nano.

Strategy

Certainly I think you should be thinking hard about what you will do if any new mets appear.  But in the absence of visible disease I think the mantra is just to watch and wait.

The longer you can avoid systemic therapies the better.  Remember, with the exception of an immune-based therapy such as HD-IL2, all the other drugs are designed to be delaying tactics.  They all run the risk of eventually becoming ineffective due to acquired drug resistance.

Hopefully the new crop of immune-based therapies (anti-PD1; anti-PDL1; dendritic vaccines; etc.) will soon start to get FDA approval.  These therapies, just like HD-IL2, promise the possibility of long-term remission but without having to check into an Intensive Care Unit to take them. Furthermore, they can be combined with other drugs to increase the cohort of patients who will get a Complete Response (CR).

one putt

NanoSecond said:

Guidance

It is true that renal cancer is generally resistant to radiation but it is only a generalization.  Some mets will easily respond; others will not. 

Once anyone shows bone mets it is my belief they should start taking either Xgeva (Denosumab) or Zometa (Zoledronic Acid).  These agents can help prevent future bone metastases.

Although it appears that you may be NvED via surgery/radiation only eventually you may need to consider some sort of systemic therapy if you develop any new mets or if that lymph node starts to progress.

Are you under the care of an oncologist who is experienced with renal cell carcinoma?

Xgeva ?

Neil, your post prompted me to make you and others aware of what may be a shift in thinking in regard to Xgeva. At my Feb visit with Dr. Hammers he mentioned that he might discontinue my Xgeva shots after being on it for nearly 2 years due to a new train of thought questioning its effectiveness on kidney cancer bone mets. We decided to continue treatment and address it again at my April visit. At my next visit, I mentioned that I had just seen my dentist (Dr. Hammers was always concerned about osteonecrosis of the jaw) who had seen no evidence of jaw problems, but I did have a loose tooth. Dr. Hammers said " you just said the magic words", and took me off Xgeva. As you know, Xgeva can cause hypocalcemia and I struggled, with the help of daily doses of calcium, to barely keep my levels within normal range the entire time I was on it. I waited to post this until this week's blood work which showed my calcium to be well within normal limits at 9.0.

  

NanoSecond

one putt said:

Xgeva ?

Neil, your post prompted me to make you and others aware of what may be a shift in thinking in regard to Xgeva. At my Feb visit with Dr. Hammers he mentioned that he might discontinue my Xgeva shots after being on it for nearly 2 years due to a new train of thought questioning its effectiveness on kidney cancer bone mets. We decided to continue treatment and address it again at my April visit. At my next visit, I mentioned that I had just seen my dentist (Dr. Hammers was always concerned about osteonecrosis of the jaw) who had seen no evidence of jaw problems, but I did have a loose tooth. Dr. Hammers said " you just said the magic words", and took me off Xgeva. As you know, Xgeva can cause hypocalcemia and I struggled, with the help of daily doses of calcium, to barely keep my levels within normal range the entire time I was on it. I waited to post this until this week's blood work which showed my calcium to be well within normal limits at 9.0.

  

Xgeva

Thanks for that heads up.  Like you I have been able to keep my calcium level to be well within normal limits at 9.0 by taking a supplement every other day.

Did Dr. Hammers say that he had become aware of some new research regarding the effectiveness of Xgeva? Or did something else prompt his rethinking? Do you know if he feels the same way about Zometa too?

Now that you have brought this up I will be sure to discuss it with him on my next visit.  However, I am not sure when that will be since I am now enrolled in an NIH clinical trial.

Thanks for mentioning this.

one putt

NanoSecond said:

Xgeva

Thanks for that heads up.  Like you I have been able to keep my calcium level to be well within normal limits at 9.0 by taking a supplement every other day.

Did Dr. Hammers say that he had become aware of some new research regarding the effectiveness of Xgeva? Or did something else prompt his rethinking? Do you know if he feels the same way about Zometa too?

Now that you have brought this up I will be sure to discuss it with him on my next visit.  However, I am not sure when that will be since I am now enrolled in an NIH clinical trial.

Thanks for mentioning this.

Xgeva

Neil, in Feb he was sort of thinking out loud and considering discontinuing my Xgeva. I can't remember what he based it on but I was reluctant to discontinue. The loose tooth sealed the deal. I see him May 15th and will get the answer from him then.

DSFrey

foxhd said:

Amazing how long renal cell mets can hide in dormancy. I hope Dsfrey reads this. Stevfrog, radiation has been effective for bone mets. It is a far better alternative than removing vertebrae or femurs, or humerous'. I've had radiation with good results. (so far). I think that you are thinking that the L2 site is where the mets are coming from. Just not so. The primary site was your kidney. Cells managed to travel via blood or lymphphatics. They tend to like bones and lungs to set up shop. Even years later. I'm glad you've been watched carefully and have good care.

I did indeed read this.

I am not completely ruling out the possibilty of recurrence in my case, but you have to admit a pT1a grade 2 fully encapulated tumor that was limited to the renal cortex is not as worrisome as a 7 cm grade 2, so T2 or worse as in stevfrog's case? I know its possible a microscopic bit of my cancer could be lurking somewhere in me waiting to undergo a genetic shift and turn into something more aggressive or simply waiting to find a suitable site to multiply. But I don't think I really need to worry too much about those odds since the tumor was encapsulated and had no lymph or renal vein involvment. I'm also confident in switching to annual scans because the one symptom I did have with my cancer has been eliminated with the tumor's removal. That symptom being weightloss. I've gained nearly 20 lbs in just 2 months since my partial nephrectomy. I do have lots of little pains here and there, who doesn't? But I figure that's simply due to my weakened frame now carrying an extra 20 lbs of weight. A proper exercise regimen should alleviate those pains. If I start to lose weight again, or develop some other symptom like a lasting cough or shortness of breath I'll make a point of letting my doctor know. If the worst befalls me and this stuff explodes on me in less than a 12 month period, not really much will be lost. Being introverted the only one to suffer the consequences will be me.