clear cell carcinoma

My husband, Chris, was diagnosed with clear cell carcinoma in July 2008.It was discovered in his back on T8-T9 which was cleaned and fused. The primary tumor was found in his right kidney. He has been using sutent since then. In July this year he had to have another back operation where the tumor was discovered originally. It was diagnosed as stable. He has been suffering with severe pain in his back since July 2008

The oncologist is now suggesting radiation. We are not sure whether this will benefit him.

I would like someone to respond  to my message.

 Ria

Hi Ria,

I hope I can help a little-pain is so bad on quality of life-I hope they can make your husband more comfortable.  There are a couple of questions left unanswered in your original e-mail,  These are things you will want to discuss with the doctor.  I can see two possible sources for his pain.  He could have a recurrence in the area of the original met.  He could also have some nerve impingement or damage from his original spinesurgery.  In addition to a CT, an MRI plus a SPECT bone scan will be helpful in determining which it is.  Obviously you want confidence the right problem is being treated-hopefully your doctor already has this covered and can explain it to you but you can certainly ask if you aren't sure.

If it is a recurrence, larger doses of radiation are usually more helpful with RCC but this is a little tougher near the spine.  You will want to go to a major cancer center and when you talk to the radiation oncologist, ask about stereotactic radiation or steretactic radiosurgery as an option.  They can sometimes use higher doses of radiation near the spine when this technique is used.  Radiation can be very helpful with pain control for bone mets.  This article is pretty technical but very good:

http://www.cancernetwork.com/display/article/10165/1164073?p

If your husband is not currently taking Zometa (zoledronic acid), this is also very efffective with RCC bone mets and worth talking to your oncologist about.  Once again a little technical but you can get the idea.

http://jco.ascopubs.org/cgi/content/full/22/20/4233?etoc

My husband has had both of these treatments for his multiple bone mets-they work together with Sutent and have done well for him-still well controlled and pain free after almost 2 years.

Very best to you both.

Susan

On 8/2/2009 susaninatl wrote:

Hi Ria,

I hope I can help a little-pain is so bad on quality of life-I hope they can make your husband more comfortable.  There are a couple of questions left unanswered in your original e-mail,  These are things you will want to discuss with the doctor.  I can see two possible sources for his pain.  He could have a recurrence in the area of the original met.  He could also have some nerve impingement or damage from his original spinesurgery.  In addition to a CT, an MRI plus a SPECT bone scan will be helpful in determining which it is.  Obviously you want confidence the right problem is being treated-hopefully your doctor already has this covered and can explain it to you but you can certainly ask if you aren't sure.

If it is a recurrence, larger doses of radiation are usually more helpful with RCC but this is a little tougher near the spine.  You will want to go to a major cancer center and when you talk to the radiation oncologist, ask about stereotactic radiation or steretactic radiosurgery as an option.  They can sometimes use higher doses of radiation near the spine when this technique is used.  Radiation can be very helpful with pain control for bone mets.  This article is pretty technical but very good:

http://www.cancernetwork.com/display/article/10165/1164073?p

If your husband is not currently taking Zometa (zoledronic acid), this is also very efffective with RCC bone mets and worth talking to your oncologist about.  Once again a little technical but you can get the idea.

http://jco.ascopubs.org/cgi/content/full/22/20/4233?etoc

My husband has had both of these treatments for his multiple bone mets-they work together with Sutent and have done well for him-still well controlled and pain free after almost 2 years.

Very best to you both.

Susan

Hi Susan,

My husband, age 56, was diagnosed with RCC in early May 2009 and has been taking Sutent for two months now.  He has had a problem with fluid in the left lung and had it drained 2x.  He has Mets to the left lung and pelvic bone and lymph system.  The pain in the pelvis is treated with extra strengh tylenol and he has difficulty walking.  He starts radiation this week.  I am curious about Zometa, because I read the warning signs and it says it affects the kidney and jaw.  How did this help your husband.  My husband was born with one kidney and has caps on his teeth.

Thank you for your time.   Lisa G

Hi Lisa,

My husband also has only one kidney due to the nephrectomy.  Because of this when he gets Zometa he hydrates aggressively and he gets a somewhat reduced dose.  Jaw necrosis is a risk you have to weigh-it occurs in a small minority of patients and risk increases with total dose-rarely seen with fewer than 24 Zometa doses if dental care is good.  Having a tooth pulled or a dental implant or poorly fitting dentures are things to be avoided if taking Zometa.  We decided that the benefits were worth the risk, but its an individual decision to make with your doctor.  This article showed less than 10% risk for a group which had quite a few infusions:

http://jco.ascopubs.org/cgi/content/abstract/23/34/8580

We have certainly been told to avoid tylenol especially long term- as it has a clear link to kidney damage. 

http://content.nejm.org/cgi/content/abstract/331/25/1675

I hope your husband gets good pain relief from the radiation-it varies, but for many folks the pain starts receeding in just a few days. I hope your hubby has that experience.

Sincerely

Susan

Lisa-After I pressed send I realized that I had not responded to the question "How has Zometa helped your husband."

 First, when there are several visible bone mets we presume that there may be other tiny bone mets that haven't really taken hold and started growing yet. Sutent is not as available in the bone as in soft tissue so it is not always effective on bone mets.   Zometa is supposed to make the bone a less friendly "soil" for new bone mets getting started.  In my husband's case-no new bone mets have been seen.  Second,  the existing bone mets have quit growing, quit hurting, and now have partially filled back in, similar to the X-ray shown in the first Zometa reference.

So for him-it's worked great-two oncologists have commented on how unusually stable his bone mets have been.

Susan

On 8/5/2009 susaninatl wrote:

Hi Lisa,

My husband also has only one kidney due to the nephrectomy.  Because of this when he gets Zometa he hydrates aggressively and he gets a somewhat reduced dose.  Jaw necrosis is a risk you have to weigh-it occurs in a small minority of patients and risk increases with total dose-rarely seen with fewer than 24 Zometa doses if dental care is good.  Having a tooth pulled or a dental implant or poorly fitting dentures are things to be avoided if taking Zometa.  We decided that the benefits were worth the risk, but its an individual decision to make with your doctor.  This article showed less than 10% risk for a group which had quite a few infusions:

http://jco.ascopubs.org/cgi/content/abstract/23/34/8580

We have certainly been told to avoid tylenol especially long term- as it has a clear link to kidney damage. 

http://content.nejm.org/cgi/content/abstract/331/25/1675

I hope your husband gets good pain relief from the radiation-it varies, but for many folks the pain starts receeding in just a few days. I hope your hubby has that experience.

Sincerely

Susan

Hi Susan,  thank you for your reply.  I mentioned this to my husband and we will speak to his doctor about your husband's success with this drug.  We are very happy for you.

I do realize that William's diagnosis is quite new and we haven't gone through many of the steps so far in his treatment.  He will go for testing next week to see if there is any new growth.  Hopefully, the Sutent is working.  For now, the radiation and the Sutent is making him feel like he has a virus, but I think its fatigue.

Thank you,   Lisa