Sutent long term

Hi does anyone know of any long term problems caused by Sutent and if scans are good can dropping from 50mg to 25mg or 12.5mg work as a maitenance program. (my oncologist isn't keen but it is still in trial form here in Australia)

I have RCC and have just had my 3 month scan. All nodes were reduced to insignificant sizes which is what we hoped for but did not expect.

I've had a fooball size tumour and kidney reomoved as well as 27 nodes on my aorta. The rest are now in retreat.

As far as side effects go, mine were really bad, espesially the mouth sores so I googled for an immunity booster and found what I wanted on Ask DrSears.com. They go through the 8 things you need but at the end give a recipeit for a milkshake. I drank this shake and within 3 days all ulsers were gone and have not returned. I passed this shake onto 2 chemo patients and it worked for them as well. It is not a product you buy buy a set of ingredients you put together. It works.

I also now take 4000mg of vitamin C (non sugared)

                        Reishi & shitake tablet 3 times a day

                        teaspoon of sodium bicarbe 3 times a day

                        a firming agent for diahrea

                        a teaspoon of ground apricot kernals every 1hr for 8hrs

                        and I eat no sugars or fast GI carbohydrates.

                        have 1 lymphatic massage on my 2 weeks off Sutent

                        and have had 10 detox footspas to date

I don't know what worked on my RCC and I don't care but all I know is that it made my family and my oncologists day when we saw the scans. The above is cheap and the result of hrs and hrs or research on the net trying to decipher the crap from the truth (the more expensive the more bullshit is involved)

hopes this helps someone.

On 1/23/2009 Timmy Tucker wrote:

Hi does anyone know of any long term problems caused by Sutent and if scans are good can dropping from 50mg to 25mg or 12.5mg work as a maitenance program. (my oncologist isn't keen but it is still in trial form here in Australia)

I have RCC and have just had my 3 month scan. All nodes were reduced to insignificant sizes which is what we hoped for but did not expect.

I've had a fooball size tumour and kidney reomoved as well as 27 nodes on my aorta. The rest are now in retreat.

As far as side effects go, mine were really bad, espesially the mouth sores so I googled for an immunity booster and found what I wanted on Ask DrSears.com. They go through the 8 things you need but at the end give a recipeit for a milkshake. I drank this shake and within 3 days all ulsers were gone and have not returned. I passed this shake onto 2 chemo patients and it worked for them as well. It is not a product you buy buy a set of ingredients you put together. It works.

I also now take 4000mg of vitamin C (non sugared)

                        Reishi & shitake tablet 3 times a day

                        teaspoon of sodium bicarbe 3 times a day

                        a firming agent for diahrea

                        a teaspoon of ground apricot kernals every 1hr for 8hrs

                        and I eat no sugars or fast GI carbohydrates.

                        have 1 lymphatic massage on my 2 weeks off Sutent

                        and have had 10 detox footspas to date

I don't know what worked on my RCC and I don't care but all I know is that it made my family and my oncologists day when we saw the scans. The above is cheap and the result of hrs and hrs or research on the net trying to decipher the crap from the truth (the more expensive the more bullshit is involved)

hopes this helps someone.

 

                      

Hello:

Where do you get the Reishi and shitake tablets from?

What is a lymphatic massage?

Krys

A naturapath can get you the Reishi/shitake tablets, my naturapath is an ex oncology nurse and is fantastic as she wants to work in with the western medicines not combat them as some overzealoss ones want to (had one who wouldn't take me on unless I went off the Sutent).

A Lymphatic massage is widley availabe, I don't know what they do but it is suppose to drain your lymph gland of toxins. The day after it I was knackered and slept most of the day. I was very sceptical of it but it did something, My oncologist said to keep away from them and others have told me not to have them but to date have been able to find any reason why on the net.

I don't know your age or physical ability but I go to gym and do resistance training 3 times a week and swim 600 meters twice a week.

I'm sure this helps as well and keeps the mind positive and healthy.

hope this helps, my problem now is that I've found out Sutent becomes less effective over the years and that you can develop thyroid problems so I'm hoping someone on this site might have experienced these.

cheers Tim

Hi Timmy,

My husband has been on Sutent for almost 2 years now and it is still stopping further growth of his cancer; however, it has not decreased any of it.  It seems that the drug does different things to different people.  He has had ongoing problems with irretation of the sensitive skin (in areas that are very unpleasant), on going problems with fatigue, brusing of the arms for no reason, and has developed a cough that want go away and seems to be getting worst.  There are many side effects to this drug but is still the best treatment for RCC.  He will have another PET scan in March and we will find out if it is still working.  Another problem with this drug is the blood counts.  It causes the blood counts to drop.  His WBC, RBC, Hgb, etc..are all low.  He has had one blood transfusion thus far and may have to have another if they can not get the counts up.  They are currently (and have been for a few months now) been giving him shots of procrit in an attempt to boost his blood count.  From what I understand theis is normal for Sutent.  Outside of what I have mentioned above, he has tolerated the drug fairly well.  He has been on the 50mg which was too strong for him after 3 months of taking it for 4 weeks on - 2 weeks off.  The oncologist lowered it to 37mg but after 5 months the cancer grew just slightly, therefore the doctor decided to try him at 2 weeks on - 1 week off of the 50mg.  This seems to be more tolerable for him.  He is a fighter and we have very good ongologist.  Your doctor may try different ways for you to take it but remain positive. 

I wish everyone with this form of cancer the best of luck in continuing the fight.  Positive attitude is a great asset in fighting.

Good luck and take care.

Sandy