Metastasis to bone- sutent, nexavar?

My friend’s dad was diagnosed with renal cell carcinoma in 2006 (Fuhrman NG1) - he had a nephrectomy then and the disease retracted. In 2011 he was diagnosed with metastases to spine (with pathological fracture of the spine). He was operated in Dec 2011 (stabilization of thoracic spine and cementing) and in Feb 2012 he started treatment with Sutent

Treatment was effective, but in May 2014 he was diagnosed with enlarged paratracheal lymph nodes and the doctor refused to treat him with Sutent any longer. When the examination was done more carefully (they wanted to remove the lymph nodes), it turned out they were not enlarged at all. However, the doctor refused to treat Piotr with Sutent claiming the break in taking it was too long.

What finally was given after a 5 month break during which the disease was progressing was Inlyta (axitinib, in Oct 2014). At the time Piotr was feeling much worse and he did not react to this treatment well- he needed to be hospitalized and another pathological fracture of the spine was diagnosed. His results were not good enough to operate: 8 creatinine (normal 0.9-1.3 ) , urea 200 mg / dl (normal 10.00 mg / dl -50.00 mg / dl), he needed to undergo kidney dialyses. Eventually, he was operated in Feb 2015

The doctor who controlled the Sutent and Inlyta treatment refuses to treat Piotr any longer. However, Prof. Szczylik, who was a consulting doctor, advises further treatment. Piotr has just started receiving Nexavar (or rather Sorafenib imported from India by the family) this week.

Let me summarize the current state of the patient in points below:

DRUGS :

- Therapy with Sorafenib ( Nexavar from India)

- Waiting for Xgeva - strengthening bones,

- Supplementation with vitamin D , vitamin C, vitamin B complex ,

- Eutyrox dose of 175 ,

- Furosemit - 40mg ,

- Cocor - 2.5 mg - daily ,

- Nitrendipine - 2x1 dailly.

- Calcium.

STATE OF THE PATIENT :

- Extensive thinning of bone in the pelvis , the bones of the skull, bridge, and others,

- Dialyses continue - every second day,

- Hemoglobin ranges in the vicinity of 7.8 ÷ 9 g / dl (normal 13.7 g / dl- 17,5g / dl),

- Urea in the vicinity of 100 mg / dl (normal 10.00 mg / dl -50.00 mg / dl).

Unfortunately, the knowledge about how to treat this disease and the approach to it in Poland leaves a lot to be desired. Since 2011 only two doctors actually believed the disease can be treated (the one who operated- an orthopaedic surgeon, and Prof. Szczylik, the consulting doctor for kidney cancer- he is the best specialist in kidney cancer in Poland). The two did a great job and gave Piotr 3,5 years of life- we believe he can still gain more. Now it is very difficult to receive any information and the family searches for any hints of what could be done to help Piotr. Thus, I would like to ask you the following questions:

-   Is it reasonable to treat him with Sutent again (since it did not start working, he stopped taking it due to doctor’s decision based on a faulty examination)?

- DDoes it make sense to take Sutent and Nexavar in turns?

-   Do you have any experience with Xgeva and whether this is helpful and how he can react to that?

-   Do you have advice of how to improve haemoglobin and urea levels? 

We will really appreciate any advice as the the family is now pretty much on their own. We believe we can still postpone the progress of the disease, but Piotr needs to get stronger and have much better results in order for any treatment to work.

 

Thank you in advance!