Sutent

ClaireS

Hi All,
My husband is 50 years old and was diagnosed with Kidney Cancer and mets to his lung and brain.
Is is currently having radiation on the whole brain and is on Sutent 50mg for the kidney and lung. He has only 5 days of sutent left of his first cycle, and 1 week left of whole brain radiation. He is experiencing a very sore mouth and throat but the radiation can also make this worse. The worst side effect he is getting is from the dexmethasone tablets as once the dose is tappered to the point of no more dex. His headaches return. Is there anyone out there on Sutent for rcc leading a normal life and have returned to their work as my husband is keen to return to work.

ejneary

Claire:

Working while on chemo is a tough haul. I was on Nexavar for 54 weeks and it was tough to manage the side effects (Exhaustion, Diarrhea, sores...) while being productive. If headache is one of the side effects, it can be debilitating and if it is bad enough, work might not be possible.
I did have headaches but they were fairly minor ones that allowed me to work but I work at a desk job. If he is in a position that is physically strenuous, it might not be possible.

More concerning is the mets to his brain. Has the radiation reduced/eliminated these ar are they still present? If he still has brain mets, any kind of work that involves heavy equipment or driving will be out.

Believe me, when I was recovering from IL-2 treatment, I was going stir crazy around the house and couldn't wait to get back to work so I understand his need to do so. The quesion remains, is it safe?

John

CancerAvenger

ejneary said:

Claire:

Working while on chemo is a tough haul. I was on Nexavar for 54 weeks and it was tough to manage the side effects (Exhaustion, Diarrhea, sores...) while being productive. If headache is one of the side effects, it can be debilitating and if it is bad enough, work might not be possible.
I did have headaches but they were fairly minor ones that allowed me to work but I work at a desk job. If he is in a position that is physically strenuous, it might not be possible.

More concerning is the mets to his brain. Has the radiation reduced/eliminated these ar are they still present? If he still has brain mets, any kind of work that involves heavy equipment or driving will be out.

Believe me, when I was recovering from IL-2 treatment, I was going stir crazy around the house and couldn't wait to get back to work so I understand his need to do so. The quesion remains, is it safe?

John

Sutent
My husband was on Sutent and he had horrible side effects. It altered everything from his appearance to his taste buds. He was TIRED all the time and barely got out of bed some days. He went days with no food because anything he put in his mouth he didn't like the taste of. Nausea was a major problem too! After being on it for 3 months and seeing not much improvement, his dr finally said enough.

His chemo meds were just switched to Afinitor and he has only been on this for 4 days now. So far so good....he did tell me last night about 40 minutes after taking it that he was starting to feel EXTREMELY tired which I guess is normal for a chemotherapy drug to do.

His taste buds are better now but he is only eating 2 meals a day.

Wish you the best my friend. HUGS

KatfromFlorida

CancerAvenger said:

Sutent
My husband was on Sutent and he had horrible side effects. It altered everything from his appearance to his taste buds. He was TIRED all the time and barely got out of bed some days. He went days with no food because anything he put in his mouth he didn't like the taste of. Nausea was a major problem too! After being on it for 3 months and seeing not much improvement, his dr finally said enough.

His chemo meds were just switched to Afinitor and he has only been on this for 4 days now. So far so good....he did tell me last night about 40 minutes after taking it that he was starting to feel EXTREMELY tired which I guess is normal for a chemotherapy drug to do.

His taste buds are better now but he is only eating 2 meals a day.

Wish you the best my friend. HUGS

So sorry about your husband
I know with all your going through right now that its pretty stressful for all. My heart goes out to you. I hope this new drug will work better for your spouse and ease some of the suffering your both dealing with.
I don't know if this will interest you but I have been reading some info with regard to the budwig diet program. Maybe when you have some time you might want to go to the website.
Some of the info they offer makes sense and maybe it can't hurt? I dunno. I may try this myself if for no other purpose then to just start feeling better again.

If you google budwig diet it should show you where the website is....

My best to you
Love and Hugs
Kat

rdlawler

Sutent
Hello Claire

If I may I would just like to offer info on how Sutent has worked for me. Just to put things into perspective, three days ago I started my 13th cycle of Sutent. I started on May 2010 after a full removal of the right kidney with about a dozen scattered mets throughout both lungs.

Side effects have included...mouth sores, loss of taste, hand and foot blisters with peeling and cracking and tender feet. Also stomach cramps, gas, diareha, hair color change, yellow skin, water retention, etc. After a while you will be able to predict what is coming next and what to expect. The intensity of the symptoms will change from one med cycle to the next. Not all symptoms happen every time and some are no longer a problem, such as I did recover my sense of taste after a period of about six months. Until that time I just accepted the new taste as the "new normal". Going hungry is not an option.

Two weeks ago I had scans done on my bones, brain, torso / lungs, pelvis and upper legs.
Previous scans have shown shrinkage and or stability of the tumors with only a very small growth one time. The new scans show ONE TUMOR HAS NOW DISAPPEARED WITH CONTINUED STABILITY EVERYWHERE ELSE. Everything has held since last December. Thats 10 months with only good results with stage 4 mrcc, using Sutent.

Stay strong and stay the course. Things will become more normal as time passes. Not always easy but very worth it. Any questions, feel free to ask.

Take care my friend
Ron in Wisconsin.

FranBG

rdlawler said:

Sutent
Hello Claire

If I may I would just like to offer info on how Sutent has worked for me. Just to put things into perspective, three days ago I started my 13th cycle of Sutent. I started on May 2010 after a full removal of the right kidney with about a dozen scattered mets throughout both lungs.

Side effects have included...mouth sores, loss of taste, hand and foot blisters with peeling and cracking and tender feet. Also stomach cramps, gas, diareha, hair color change, yellow skin, water retention, etc. After a while you will be able to predict what is coming next and what to expect. The intensity of the symptoms will change from one med cycle to the next. Not all symptoms happen every time and some are no longer a problem, such as I did recover my sense of taste after a period of about six months. Until that time I just accepted the new taste as the "new normal". Going hungry is not an option.

Two weeks ago I had scans done on my bones, brain, torso / lungs, pelvis and upper legs.
Previous scans have shown shrinkage and or stability of the tumors with only a very small growth one time. The new scans show ONE TUMOR HAS NOW DISAPPEARED WITH CONTINUED STABILITY EVERYWHERE ELSE. Everything has held since last December. Thats 10 months with only good results with stage 4 mrcc, using Sutent.

Stay strong and stay the course. Things will become more normal as time passes. Not always easy but very worth it. Any questions, feel free to ask.

Take care my friend
Ron in Wisconsin.

Sutent with sides
Ron, your reply to Claire was music to my ears! My husband has been on Sutent for three weeks but had to stop twice due to overwhelming side effects requiring a lowering of the dosage. He had the same thing as you, rt. kidney removed, metas in the lungs. But he also had to have Cyberknife and Whole brain radiation which may still be affecting him, making it more difficult for his body to handle Sutent right now. Your story suggests that this difficult drug is worth the trouble it causes. Thanks for telling it here.

Continued success!

Fran of Massachusetts

heathercrabb1

rdlawler said:

Sutent
Hello Claire

If I may I would just like to offer info on how Sutent has worked for me. Just to put things into perspective, three days ago I started my 13th cycle of Sutent. I started on May 2010 after a full removal of the right kidney with about a dozen scattered mets throughout both lungs.

Side effects have included...mouth sores, loss of taste, hand and foot blisters with peeling and cracking and tender feet. Also stomach cramps, gas, diareha, hair color change, yellow skin, water retention, etc. After a while you will be able to predict what is coming next and what to expect. The intensity of the symptoms will change from one med cycle to the next. Not all symptoms happen every time and some are no longer a problem, such as I did recover my sense of taste after a period of about six months. Until that time I just accepted the new taste as the "new normal". Going hungry is not an option.

Two weeks ago I had scans done on my bones, brain, torso / lungs, pelvis and upper legs.
Previous scans have shown shrinkage and or stability of the tumors with only a very small growth one time. The new scans show ONE TUMOR HAS NOW DISAPPEARED WITH CONTINUED STABILITY EVERYWHERE ELSE. Everything has held since last December. Thats 10 months with only good results with stage 4 mrcc, using Sutent.

Stay strong and stay the course. Things will become more normal as time passes. Not always easy but very worth it. Any questions, feel free to ask.

Take care my friend
Ron in Wisconsin.

Sutent and Kidney Cancer
Hi Everyone

My Dad was diagnosed with kidney cancer last year at the age of 76 and he had a kidney removed, which the doctors said was the biggest one they had ever seen! Everything was going well until he had a CT scan in April this year that showed that some of the lymph nodes had grown slightly and he was prescribed Sutent. This has had all of the side effects that you have identified, the worst being his loss of appetite and taste as he has always been a good eater. He is now on Sutent for 7 days taking it and 7 days off which is starting to be a good combination as he is not losing his appetite so much.

The worst thing that seems to be happening is that his stomach keeps swelling with fluid and he has had this drained off about 4 times now. He is in hospital at the moment and has just had 8.5 litres drained off, which seems an incredible amount. Before he has the drain, he is just so uncomfortable and that also stops him eating. We are in the UK and the doctors here don't seem to know why he is getting the fluid build up.

Has anyone suffered the same thing? If so, is there any answer to this as I'd love to know.

Thanks

Heather

Anna Bery

heathercrabb1 said:

Sutent and Kidney Cancer
Hi Everyone

My Dad was diagnosed with kidney cancer last year at the age of 76 and he had a kidney removed, which the doctors said was the biggest one they had ever seen! Everything was going well until he had a CT scan in April this year that showed that some of the lymph nodes had grown slightly and he was prescribed Sutent. This has had all of the side effects that you have identified, the worst being his loss of appetite and taste as he has always been a good eater. He is now on Sutent for 7 days taking it and 7 days off which is starting to be a good combination as he is not losing his appetite so much.

The worst thing that seems to be happening is that his stomach keeps swelling with fluid and he has had this drained off about 4 times now. He is in hospital at the moment and has just had 8.5 litres drained off, which seems an incredible amount. Before he has the drain, he is just so uncomfortable and that also stops him eating. We are in the UK and the doctors here don't seem to know why he is getting the fluid build up.

Has anyone suffered the same thing? If so, is there any answer to this as I'd love to know.

Thanks

Heather

Hey, I am sorry to hear
Hey, I am sorry to hear about your father. My mom had the same exact thing!!! She was throwing up all the time and at first the docs thought that its coming from the brain metastasis but then they did CT scan and discovered that mom has small bowels obstruction. First they wanted to do an open surgery to remove the obstruction. The docs could not say by the CT scan what caused the obstruction, it could be cancer and it could be something else. The day before the surgery mom had 2 strokes and the surgery was canceled. All this time mom had an angy tube in her nose, for like 6 weeks!!!!! Eventually from this tube she got an olser and the GI doctors closed it through endoscopy. After the endoscopy the doctors removed the angy tube for a couple of days and let mom eat and drink for 5 days. Since she did not throw up, the docs (stupid) decided that the obstruction was resolved and sent mom home. Same day I brought her home she started to throw up and again we went to hospital. Eventually, the GI doctor put a PEG tube in mom's stomach for drainage only and she fed through IV (TPN). Right now we are in hospice for around 2 months. Mom get all her medications and fluids through the IV because she can absorb nothing through her stomach.
I wish you all the best. Hang in there

Anna Bery

Hey
My mom was on Sutent for 11 months but with no brain radiation. During this time she went to school almost full time and helped us with all the 4 grand kids.
Good luck

heathercrabb1

Anna Bery said:

Hey
My mom was on Sutent for 11 months but with no brain radiation. During this time she went to school almost full time and helped us with all the 4 grand kids.
Good luck

Hey
Thank you for that. My Dad was in hospital having a drain just three weeks ago and they took off 8.5 liters of fluid. Now, in just a short time, he is back in hospital having another drain! The doctors cannot say where it is coming from or what is causing the fluid. He can hardly eat as he has no space as his stomach is so bloated. I am really worried.

pjune127

heathercrabb1 said:

Hey
Thank you for that. My Dad was in hospital having a drain just three weeks ago and they took off 8.5 liters of fluid. Now, in just a short time, he is back in hospital having another drain! The doctors cannot say where it is coming from or what is causing the fluid. He can hardly eat as he has no space as his stomach is so bloated. I am really worried.

Sutent
I had a radical nephrectomy of the right kidney in July of 2011. The tumor was large (11cm) and had migrated into my vena cava. I had some major surgery...had my chest cracked open in order to be put on a heart lung bypass during surgery. I made a remarkable recovery and was only in the hospital for 5 days post surgery. After about 6 weeks of recovery, I was put on Sutent. I initially started at 25 mg/2 weeks on/1 week off. I gradually went to 37.5 mg and I have remained at that dosage. The first scan I had done showed that the mets in my lungs were stable and some had in fact shrunk. I am going for another scan on January 19th. I have found that taking this reduced dosage and taking it over 3 weeks instead of 6 (4 on/2 off) has really minimized the toxicity. My oncologist is amazing and swears that toxicity is not directly related to success of the drug. He believes that I can be maintained on this dosage. Anyone else have this experience?

myboys2

Sutent Success
We have been on Sutent outside of 2.5 weeks to remove the kidney. It is working very well for us. The one thing that troubles me is the whole brain rad. From all I have read, seen and heard that is not very effective as a treatment. Also, our doc at St Lukes Roosevelt says 37.5 has shown just as much efficacy as 50. Also, she does 2 weeks on and 1 week off. We have had no issues except yellowing of the hands. My son does the 50 because he can but our doc says as we get further into treatment we may go to 37.5 as a maintenance treatment.

Gail mother of Cody 21
diagnosis 8/10 unclassified RCC
8/16 checked into NYU as emergency surgeon concerned head tumor was closing ventricle to brain
8/17 embolization via femoral artery to bone lesion on skull 7 hours
8/18 repeat
8/19 10.5 hour surgery to remove skull mass (about 45% right skull)
8/20 began a vegan(from an animal product standpoint) gluten free low glycemic diet; no casein but we do eat ocean caught fish and org chicken; org green drink every day
9/4 titanium skull inserted
9/29 begin sutent 25mg 2 weeks on one week off; then 37.5 2 weeks on 1 week off; then 50mg for 3 weeks then off 5 days (preop tests show 3 tiny liver lesions shrinking) Also Denosumub injection. No lymph or lung
11/16 full neph of lft kidney 5.5 tumor (started at 6cm but sutent was working!!) Still unclassified 
12/1 begin sutent again at 37.5 to work into it
12/8 sutent to 50mg for a week then off a week and continue cycle of 50 2 weeks on 1 week off until next scans
12/12 began radiation of remaining skull mets Monday and Thursday for 3 weeks high dose (already noted necrosis of tumor after one dose)

This is also such an interesting article.

http://www.ikcc.org/kidney-cancer/basics/35,

jgreen4

myboys2 said:

Sutent Success
We have been on Sutent outside of 2.5 weeks to remove the kidney. It is working very well for us. The one thing that troubles me is the whole brain rad. From all I have read, seen and heard that is not very effective as a treatment. Also, our doc at St Lukes Roosevelt says 37.5 has shown just as much efficacy as 50. Also, she does 2 weeks on and 1 week off. We have had no issues except yellowing of the hands. My son does the 50 because he can but our doc says as we get further into treatment we may go to 37.5 as a maintenance treatment.

Gail mother of Cody 21
diagnosis 8/10 unclassified RCC
8/16 checked into NYU as emergency surgeon concerned head tumor was closing ventricle to brain
8/17 embolization via femoral artery to bone lesion on skull 7 hours
8/18 repeat
8/19 10.5 hour surgery to remove skull mass (about 45% right skull)
8/20 began a vegan(from an animal product standpoint) gluten free low glycemic diet; no casein but we do eat ocean caught fish and org chicken; org green drink every day
9/4 titanium skull inserted
9/29 begin sutent 25mg 2 weeks on one week off; then 37.5 2 weeks on 1 week off; then 50mg for 3 weeks then off 5 days (preop tests show 3 tiny liver lesions shrinking) Also Denosumub injection. No lymph or lung
11/16 full neph of lft kidney 5.5 tumor (started at 6cm but sutent was working!!) Still unclassified 
12/1 begin sutent again at 37.5 to work into it
12/8 sutent to 50mg for a week then off a week and continue cycle of 50 2 weeks on 1 week off until next scans
12/12 began radiation of remaining skull mets Monday and Thursday for 3 weeks high dose (already noted necrosis of tumor after one dose)

This is also such an interesting article.

http://www.ikcc.org/kidney-cancer/basics/35,

lower dosage?
My husband has mRCC and is on his third round of sutent, 50mg daily, 4 wk on and 2 wk off. Side effects are brutal and increase with each round. It's working, last pet shows significant shrinkage of tumors, so onc wants to continue as we are. Sounds like dosage and even length of rounds can be changed without compromising success of treatment? Something to talk with his onc about, for sure.

Gike

CancerAvenger said:

Sutent
My husband was on Sutent and he had horrible side effects. It altered everything from his appearance to his taste buds. He was TIRED all the time and barely got out of bed some days. He went days with no food because anything he put in his mouth he didn't like the taste of. Nausea was a major problem too! After being on it for 3 months and seeing not much improvement, his dr finally said enough.

His chemo meds were just switched to Afinitor and he has only been on this for 4 days now. So far so good....he did tell me last night about 40 minutes after taking it that he was starting to feel EXTREMELY tired which I guess is normal for a chemotherapy drug to do.

His taste buds are better now but he is only eating 2 meals a day.

Wish you the best my friend. HUGS

Afinator
I am new to this, but I'm hoping you will be able to provide me with some information. My husband had a right kidney nephrectomy at the end of Sept., 2011. His cancer was Stage IV with renal vein involvement. In November they discovered a 5mm met in his lung. Last week he had a CT scan which showed the lung met had not grown, nothing new showed up in the lungs and nothing in the bones, however the doctor said the scan showed a mass in his liver which he hoped was a benigh hemangiotoma. He suggested an MRI to be sure- which he got on Tuesday (1/16/12). Wednesday we got a call from his oncologist saying they want to see him this Friday instead of waiting till his scheduled appt. on Feb. 8th. We are not anticipating good news..
He is about to start treatment on Afinator next week. This would be his first treatment of any kind since his nephrectomy. I am wondering how you husband reacted to Afinator compared to Sutent? One oncologist suggested putting him on Sutent first but we'd heard it was not as well tolerated as Afinator. I realise your post was written in August.. I hope things are going okay for your husband.

snydergirl

jgreen4 said:

lower dosage?
My husband has mRCC and is on his third round of sutent, 50mg daily, 4 wk on and 2 wk off. Side effects are brutal and increase with each round. It's working, last pet shows significant shrinkage of tumors, so onc wants to continue as we are. Sounds like dosage and even length of rounds can be changed without compromising success of treatment? Something to talk with his onc about, for sure.

Sutent
My husband was diagnosed stage IV, grade 2 RCC in November 11, had radical open nephrectomy on 12/29, tumor 10.5 cm, no renal involvement, Dr is recommending Sutent, not sure why, we have no mets that we know of, lymph nodes swollen, but shrinking, CT scan in 2 weeks. Is Sutent used to prevent recurrence, We have the chouce to either monitor with scans or start Sutent. Any advice?

Jeanne

snydergirl

jgreen4 said:

lower dosage?
My husband has mRCC and is on his third round of sutent, 50mg daily, 4 wk on and 2 wk off. Side effects are brutal and increase with each round. It's working, last pet shows significant shrinkage of tumors, so onc wants to continue as we are. Sounds like dosage and even length of rounds can be changed without compromising success of treatment? Something to talk with his onc about, for sure.

Sutent
My husband was diagnosed stage IV, grade 2 RCC in November 11, had radical open nephrectomy on 12/29, tumor 10.5 cm, no renal involvement, Dr is recommending Sutent, not sure why, we have no mets that we know of, lymph nodes swollen, but shrinking, CT scan in 2 weeks. Is Sutent used to prevent recurrence, We have the chouce to either monitor with scans or start Sutent. Any advice?

Jeanne

snydergirl

jgreen4 said:

lower dosage?
My husband has mRCC and is on his third round of sutent, 50mg daily, 4 wk on and 2 wk off. Side effects are brutal and increase with each round. It's working, last pet shows significant shrinkage of tumors, so onc wants to continue as we are. Sounds like dosage and even length of rounds can be changed without compromising success of treatment? Something to talk with his onc about, for sure.

Sutent
My husband was diagnosed stage IV, grade 2 RCC in November 11, had radical open nephrectomy on 12/29, tumor 10.5 cm, no renal involvement, Dr is recommending Sutent, not sure why, we have no mets that we know of, lymph nodes swollen, but shrinking, CT scan in 2 weeks. Is Sutent used to prevent recurrence, We have the chouce to either monitor with scans or start Sutent. Any advice?

Jeanne

DebbieA

Back to life while on Sutent
My husband has been on Sutent for about 9 months now. He's 58 yrs old. His kidney cancer (right nephrectomy about a year before mets showed up) had mets to the bone, and lung. He had his left femur cleaned out and pinned, but the tumor on the bottom vertebrae is inoperable (his pelvis would have to be 'unhinged' to reach it, very extensive and risky surgery). He underwent 20 days of radiation to the vertebrae, and started Sutent - 37.5 mg - 4 weeks on, 2 weeks off. When the mets were discovered, he was unable to sit - the tumor was putting pressure on the nerves going down his leg. After radiation, and the start of Sutent, the tumor shrunk from about 2.5 in to 2 inches, and he was able to function again, but with pain that requires constant pain meds. After 3 rounds of the Sutent, the mets to the lung (they were small) were gone. Since then, the tumor on the vertebrae has stabilized - the onc said it seems to have gone 'dormant'. The great thing is, within about 3 months of the discovery of the mets, my husband was back at work as an OTR truck driver, working close to the same amount that he did before. This was a huge boost to his outlook - he was back to himself again. His side effects from Sutent have been fairly minimal - he gets tired easily, it has affected his sense of taste, and sometimes is rather queasy. He did try to go up to 50mg for one cycle, but that was a little harder on him, so he went back to 37.5. Other than a weight restriction because of the deterioration of his vertebrae, and tiring much quicker, he is pretty much back to 'normal'. He works a full work week every week, we just went to see our grandkids in Florida and took them to Universal Studios (we stayed at a hotel right there, so he was able to go back and rest when he got tired), and he and I are building the deck to our house. At this point, things are doing well - we are very blessed. We continue to plan (we are incurable DIYers), and laugh, and work on finishing all the little things on the addition to our house. So, yes, it is possible to go on with your life while on Sutent - if you are lucky enough not to have the more severe side effects that I know some suffer with. And if and when the Sutent should not be effective anymore, well, then we go on to the next option - Nexavar or whatever the onc feels would be best - and just 'keep on truckin'

Cabee

FranBG said:

Sutent with sides
Ron, your reply to Claire was music to my ears! My husband has been on Sutent for three weeks but had to stop twice due to overwhelming side effects requiring a lowering of the dosage. He had the same thing as you, rt. kidney removed, metas in the lungs. But he also had to have Cyberknife and Whole brain radiation which may still be affecting him, making it more difficult for his body to handle Sutent right now. Your story suggests that this difficult drug is worth the trouble it causes. Thanks for telling it here.

Continued success!

Fran of Massachusetts

My husband and Sutent

Dear Fran, My name is Cathy, my husband lost his right kidney to cancer in 2002.  In April of 2013 I thought he had pneumonia.   Upon seeing his primary they did an xray and there sat a large tumor occluding his right main stem bronchus.   He has stage four  renal cell,  metastisis to his lungs.  He has had six bronchoscopies, two lazer treatments to stop bleeding, but he is  eleven months into  this and because of Sutent, he doing well.  His only remaining side effects to date are diarrhea, and no taste buds.  If you saw him you would never believe he has anything wrong with him.   I believe his attitude is a large part of it , because he told me , "i'm a Marine and I will beat the -----!"   So I say to all Sutent users hang in there,  keep your faith, because everyone is prqaying for you and  it can get better.  Bill faithfully takes his Sutent, they have switched him to one 50mg tablet, instead of four 12.5mg.  It's like a vitamin.....   Remain positive that  you are not alone and just keep saying your prayers because GOD does answer them.   I will keep you in my prayers ,   take care and hang in there,    Always Cathy, Pittsburgh,Pa.