Help

hello all,

I know lot of people are going under much pain. but all i can say is to be positive always as god is there.

I m from india.My husband 35 yrs old is suffering from renal cell carcinoma(metastatis to brain,lung,mediastinium).I was in UK when he had his first symtom of coughing blood & doctor diagnosed as T.B & was treated with TB medicine for a month thereafter with no response to his tumors in chest by doing X-ray we decided to come back to india as he was having lot of side-effects & no treatment was given for side effects.

He was being diagnosed with renal cell carcinoma in an advanced stage.I was shocked as how can one treat for TB on assumption.

He was on interferon for 1 yr.which gave us a bit positive result but due to side effects v had to stop. Doctor then put him on chemotherapy,since 2005 he is continuing xeloda, gemcitabine & thalidomide.

Simultanously,he was also given ayurvedic medicine & homeopathic with restriction in food. His body has improved in terms of side effects.I ve also tried reiki,Pranic healing etc.with less improvement. Now I m loosing hope from everything.

So far,his disease was stable now it is progressing. Doctor gave us an option for Sutent/Nexaware with not much benefit...i mean no guarantee for cure.

I m very much new to this medicine & not aware of side effects.Also drug being very expensive i may not afford long not even for an year after selling my property. I trying here & there.

Is there who can help me in taking decision what should i do or is there any alternative way to bring him out.

Bina Chaudhary

You didn't say what type, or strain he has. There is good data available on the "clear cell" tpo help you & his Dr make a good decision, but if it's one of the more obscure strains, where there haven't been any clinical studies it is pretty much trial & hope.

I have RCC Pappillary strain, stage 4, type 1, & I chose Nexavar & have been doing well with it. Lots of side effects but it is controlling & reducing my tumors.

Bina,

For brain metasis, CyberKnife is an option.  Not sure where you live now but you can locate a CyberKnife center by using the internet.  Some of the centers offer assistance to people who cannot afford or do not have insurance coverage. 

Sutent will not cross the blood/brain barrier so if your husband does take it, he would need to do something else for his brain mets.  The lung mets can also be treated by using CyberKnife which is targeted radiation.  It is outpatient and my husband had no significant side effects.  His brain mets were both zapped by CyberKnife on 9/25 and 10/2 recently.  He feels good and will be starting Sutent this week for mets in his pancreas.  We have been living with RCC (Renal cell cancer also known as Kidney cancer) since 2001.

My best advice is to find a Medical Oncologist that specializes in RCC Renal Cell Cancer.  Where do you live?  The Kidney Cancer Foundation is also a good source for information.  I pray that you find a compassionate doctor as there are better solutions to fight this disease this year.

Susan B

Bunker,

Thank God for your positive results on Sutent.  My assumption is that many more people who are not having great results get on the message board looking for help and those who have great results just do not participate.  It is so good to hear someone speak up that has had good results.  My husband has been fighting this disease since 2001.  We prayed that there would be something better come along before he had to do treatment and so we are now starting Sutent.  We also just did two CyberKnife outpatient treatments on 2 inoperable brain mets.  It was so easy that it seems too good to be true.  This stereotactic radiation is supposed to kill the tumors at the DNA level, we find out in 2 months.

God Bless you for writing - Susan B

Susan

My wife and I agree with your assessment. Those with good/excellent results tend to drop off of these websites and that leaves those who are new or desparate. Unfortunately this paints a very gloomy picture for those needing help or for those recently diagnosed. This is not only inaccurate but extremely unfair. Given our tremendous luck and good fortune (meaning Sutent) we have chosen to stay connected and help others where we can. Good luck to you and your husband and I hope that Sutent works for him as it did for me. Please keep me posted on the results of the stereotactic radiation.

Bunker 

Thanks but its a never ending treatment & it cost 3.5-4 lacs per month.

who can afford? I m tired. Sometimes I m depressed as there are no ways to get him out of it.

He is back on Interferon.I don't how long he will be able to continue.I will only come to know after his further report another couple of months.

Let me convince him after all he has to suffer from all the side effects.I will definately get in touch.

Bina

what kind of side effects exactly one has with sutent.

My husband is tired but he's still fighting & supportive. I will definately visit pfizer site & look of financial help as its a never ending treatment that's what doctor says.It might help him & might not so Dr.is not advising us.

So I m hesitating for new drug.He is back on Interferon Injection with chemotherapy(INJECTION & ORAL) & linalidomide.

bina

susan

I ve met all the Best Indian doctors for RCC. All of them have the same answer Miracle.

As per their advise Sutent can be tried but since it is not available in India v have to order from USA & that is how it cost us 4 lacs appx.I m from a middle class family & i ve tried my way for clinical trials & I came to know i was late to enter.

I ve to think much before undergoing sutent. My husband is right now given Interferon,gemcitabine,capecitabin & linalidomide. I don't how much he responds to this medicine.

Later on I m left with none other than sutent/nexaware. If this medicines are for short period then I can manage but doctor says its a never ending treatment so how can i go I m finished treating him for 4 yrs.

I m tired & helpless.

bina