Just received news wife has stage iv rcc

Hello to everyone.  Keep the fight up.  My wife has just been recently diagnosis with rcc stage iv.  First question have many of you had the severe symptoms of blood in the urine and headache.  She is about to start on sutent.  She does not suffer from any major symptom and we discovered it by accident when we requested they do a chest x-ray, which proceed to do a ct scan which showed that it had spread.  I guess my questions is if she feeling okay and not feeling any major symptoms how worried should I really be?  I don't want her to know to much so I can keep her moral up but find myself constanly holding back tears.  She a strong woman and I want to make sure she is here for as long as I can have her.  She also has responded well to the radiation therapy.  I just purchasd the sutent for her and being uninsured it will take I while to get financial help to respond quickly.  Is there anything else I can do to speed that up.  What kind of syptoms has anyone else had a stage iv?  This will certainly help calm me down.  I have read so many of the treads that they all inspire a lot of hope and I will hold everyone in my prayers and have faith in gods promise in Rev 21:4,  take care and thanks for having this site available for us.

Jimmy69 -

Except for the insurance issue, your situation sounds almost identical to mine, in 02-08. albeit she had her left kidney removed w/ the tumor in 01-05. I think you are wise to tread lightly w/ what you learn, but you know her temperment better than anyone.  My wife has gradually become more involved in the research you will need to do to be an effect caregiver on her behalf.  My wife's only symptom before the nephrectomy was blood in her urine.  She had no symptoms when the lesions in her lungs & liver were discovered.  Your wife will start to have symptoms due to the Sutent, what are called side effects.  They can not be accurrately predicted, but fatique is by far the most common.  Sutent is more toxic to some than to others.  Sometimes, a change in dosage (my wife started on 50 mg/day but is now at 37.5 mg/day) or schedule (4 wks on, 1 wk off is standard, I think, but I know others are on continuous, or 2 days on, 1 day off, or various other regimes) can help.  It is important that you have a good oncologist in whom you can place your trust, & you can not know if that is the nature of the relationship w/o doing some work on your part.  Find out what her or his experience w/ RCC is, and ask Qs which are important to you.  Those can be framed by doing lots of reading on sites such as this, as it appears you are already doing.  My prayers are w/ you & w/ your wife. 

stgooch,  Thanks for responding.  I was looking for someone with similar circumstances.  How is your wife doing?  Has her tumors stop growing or reduced.  How has the sutent affected her?  Is she suffering from just fatigue and she hasn't develop any blood clots?  Has she improved? and how much longer do the doctors anticipate her to be on the sutent.  I hope that everything is turning out well for you and your wife and will keep you in our prayers. Tell her that if she has gotten this far she is a lot stronger than many other women and that we are all proud of her.  My point for my wife is that I don't won't her to worry.  I have read so much about how sutent has helped others that I hope it does the same for our wives.  Stay strong and live long.

Thank you for your thoughts & prayers.  My wife is well, comparatively, not as well as before the RCC returned, but well compared to what we could have anticipated if Sutent had not be developed between the time she had her nephrectomy & the time her matastasis was discovered.

 Initially, she was on Sutent, 50 mg/day for 2 cycles.  The CT following those cycles showed that the lesions in the lungs, except for one, had practically disappeared, & the one which remained & those in the liver had some shrinkage.  Because of the effects of the medication on her mucuous membranes & other SEs, dosage was reduced to 37.5 mg/day, and the two CTs since have shown the lesions to be stable.  She tolerates the Sutent fairly well & will remain on it as long as it prevents the disease from progressing.  If & when that occurs, we will determine, w/ the oncologist's help, the options available, which we hope will be significantly more than those currently in use, & decide what is best for her. She has not had blood clots.  She is strong & motivated & we hope she will not only survive, but thrive.  Pax, and stay strong, also.

Hi sounds like I am in the same situation with my husband as you are with your wife.  My husband has his kidney removed 11/08 and this last ct scan  Nov 1st, showed very small lesions on lungs and liver.  He has been on the sutent for 12 days now with no symptoms.  Do you know if there is any correlaton between effectiveness of drug and syymptoms.  The first week it was all I could do to fight back the tears but I have adjusted to the fact.  I am calling the cancer Cletus...always wanting to be the center of attention and attempting to suck us dry.  We laugh a lot. Thanks for your time to reply to messages.

 

On 11/28/2008 Jimmy69 wrote:

Hello to everyone.  Keep the fight up.  My wife has just been recently diagnosis with rcc stage iv.  First question have many of you had the severe symptoms of blood in the urine and headache.  She is about to start on sutent.  She does not suffer from any major symptom and we discovered it by accident when we requested they do a chest x-ray, which proceed to do a ct scan which showed that it had spread.  I guess my questions is if she feeling okay and not feeling any major symptoms how worried should I really be?  I don't want her to know to much so I can keep her moral up but find myself constanly holding back tears.  She a strong woman and I want to make sure she is here for as long as I can have her.  She also has responded well to the radiation therapy.  I just purchasd the sutent for her and being uninsured it will take I while to get financial help to respond quickly.  Is there anything else I can do to speed that up.  What kind of syptoms has anyone else had a stage iv?  This will certainly help calm me down.  I have read so many of the treads that they all inspire a lot of hope and I will hold everyone in my prayers and have faith in gods promise in Rev 21:4,  take care and thanks for having this site available for us.

Hi Jimmy,

 

I was diagnosed with Stage 4 RCC back in April.  Mine had spread to my lungs.  The surgery took care of the majority of the mass (20lbs) which I didn't know was there...we found it by accident too.

Stutent: Wow, I can't fathom paying for that without insurance...I'll pray for you there.   As for side effects, I've been told it effecst everyone differently.  In my case on my second 28 day cycle of 50mg dosing, i developed blisters on my feet.  They got pretty severe, and I was referred to a dermatologist who put me on Lyrica and some topical creams, Clobetasol and Urea 40%. 

 I manage the blisters with the drugs and topical ointments...and a ton of bandaids.  When I get close to the 3rd week of the cycle I try to stay off my feet as much as possible, and dont do or go anywhere unnecessary in the 4th week.  All usually heals in a few days off the meds.

I'm starting my 4th cycle today.  I had a CT 2 weeks ago...and the nodes in my lungs havent' changed in 7 months...PRAISE GOD...

 Good luck.

 Doc

Singjan,

My wife has been on the sutent for about 4 days now an has not suffered any major side effects.  We have been blend a lot of fruits and vegies for her so her immunie system is up.  Because she also has anemia.  Her red blood count is up so it defiently has help.  They state everyone reacts different.  So I really can't say there is a corealtion?  I hope the little info I staed does help.  Try to blend the friuts for him and the vegies( alot of green)  This also makes it easier to digest.  I tell my wife eat first than get the veggie or friut blend.  Because if they do this first they tend to fill up sooner.  It only has to be about 6-8 oz

My wife started Sutent at 50 mg/day, 28 on, 14 off, w/ some shrinkage after 2 rounds, but then reduced to 37.5 mg for 5 rounds, w/ stable lesions. Her next round, which will start shortly after the 1st of the year, will be at 25 mg.  We have been assured by the oncologist that there is no know relationship between severity of the SEs (the reason for the reductions), and effectiveness of the drug, but there are no studies on the subject.  I have heard  other oncologists speculate the the usual paradigm for medications - give the largest dose the patient can reasonably handle - may not apply to targeted thearpies such as Sutent.  I am praying, obviously, that is correct.  I will try to remember to post on this subject again after her next scan, which is scheduled for April.

 

On 11/28/2008 Jimmy69 wrote:

Hello to everyone.  Keep the fight up.  My wife has just been recently diagnosis with rcc stage iv.  First question have many of you had the severe symptoms of blood in the urine and headache.  She is about to start on sutent.  She does not suffer from any major symptom and we discovered it by accident when we requested they do a chest x-ray, which proceed to do a ct scan which showed that it had spread.  I guess my questions is if she feeling okay and not feeling any major symptoms how worried should I really be?  I don't want her to know to much so I can keep her moral up but find myself constanly holding back tears.  She a strong woman and I want to make sure she is here for as long as I can have her.  She also has responded well to the radiation therapy.  I just purchasd the sutent for her and being uninsured it will take I while to get financial help to respond quickly.  Is there anything else I can do to speed that up.  What kind of syptoms has anyone else had a stage iv?  This will certainly help calm me down.  I have read so many of the treads that they all inspire a lot of hope and I will hold everyone in my prayers and have faith in gods promise in Rev 21:4,  take care and thanks for having this site available for us.

my father has stage iv RCC diagnosed in december 2008. he had been sick since a dirtbike accident in october of 2007 but more recently since about august 2008. he had shortness of breath, low blood counts, high blood sugars. he is currently on torisel first treatment and is very agitated and fatigued. he has had the blood in the urine for a long time and also the headaches. the cancer has spread to the liver and lungs and then not a candidate for sutent or nephrectomy. he has heart disease and diabetes so he has a triple whammy. his prognosis was 6-12 mths but we will see what happens