Sutent - need advice please

Hi Everyone,

My husband Dave was diagnosed with stage IV RCC with mets to lungs, lymph nodes in the chest, and brain in June 2008.  His condition was so poor when diagnosed that the doctors didn't expect him to live more than a few months, so they put him on the strongest drug first.  He was on Torisel for 8 months, and it literally saved his life.  He had some awful side effects, but he looked and felt so much better after Torisel was started that he said the side effects were worth it.  The Torisel stopped working after 8 months, and he was switched to Sutent 50 mg at 28 days "on" and 14 days "off" cycle.  He is now in the middle of his 5th cycle.  The CT scans have shown the Sutent is doing its job and keeping things either shrinking or stable.  No new growth, and that's great news! 

Well, Dave is having some really horrible side effects now.  He has the most horrible heartburn and indigestion and a bit of nausea almost all the time.  He has diarrhea at times which is so bad that he ended up in the hospital, in intensive care unit, about 3 weeks ago.  He got so dehydrated from the diarrhea and couldn't get caught up with his fluids, and his blood pressure bottomed out.  But he did fine after that and had his two weeks "off" Sutent, and he recovered and was feeling better.  But now he's in the middle of another cycle, and he's really struggling.  Last night the heartburn was so bad he had to get up and sleep in the recliner because it hurt to lie down. 

My question is this:  Has anyone switched to a lower dose of Sutent and had any luck?  Our oncologist suggested going down to 37.5 mg to try to ease some of the side effects, but Dave is terrified that if he decreases the dosage the cancer will come back sooner.  Please, anyone who has had any experience with this let me know how it worked out.  I don't know how much longer he can go on like this.

Thank you, and God Bless everyone!

Nancy 

Hi Nancy,

My husband was on Sutent 50 mg for 2 years when it stopped working for him in June of 2009.  This is what happened with him.  He had really great results and after being on it about 15 months and getting a PET scan that showed no activity the doctor reduced his dosage to 37.5.  That did not work for him and he had to go back up to 50 because there was progression.  The 50's continued to work until 6/09.  Now I do know of people that have had great results of the lower doses, even as low as 25.  I think each person is different and if your husband decides to go to a lower dose he should just make sure he is montitored closely.  Now as far as the heartburn and indigestion, my husbsand sufferred terribly from it.  He also spent many nights sleeping upright.  Nexium seemed to help as well as Tums and Mylanta throughout the day.  If he isn't taking a prescription for heartburn already he will need to ask for one. Or maybe for something stronger if he is already taking something.

Good luck and hang in there.

Debbie

Hi!

My father have metastatic clear cell carcinoma and he is on Sutent for 15 months but last month Sutent stopped working for him. We are from Romania and here getting treated properly is a little harder, especially when it commes to the part of new drugs. So, we decided to give him the 75mg dose. First 28 days have past, he is now going to start the second 28 days. Is true, the side effects were worse, meaning that the nosia and intestinal problems were harder, the bool presure were higher, lost his appetite. But before this dose, when he was on 50 mg dose, the side effects were almost gone, probably his body was getting used with the medicine and Sutent stopped working. We wait to see the results of his scan at the end of this month.

So, my father managed well the 50 mg dose, and pretty well the 75 mg dose, but I read here, on this site, that there are people that couldn't manage the 37.5 dose, so they had to swich on 25 mg. I think that  depends on each person and his health, and God.

Wish you all the best and Gos bless all! 

Hi!

My father have metastatic clear cell carcinoma and he is on Sutent for 15 months but last month Sutent stopped working for him. We are from Romania and here getting treated properly is a little harder, especially when it commes to the part of new drugs. So, we decided to give him the 75mg dose. First 28 days have past, he is now going to start the second 28 days. Is true, the side effects were worse, meaning that the nosia and intestinal problems were harder, the bool presure were higher, lost his appetite. But before this dose, when he was on 50 mg dose, the side effects were almost gone, probably his body was getting used with the medicine and Sutent stopped working. We wait to see the results of his scan at the end of this month.

So, my father managed well the 50 mg dose, and pretty well the 75 mg dose, but I read here, on this site, that there are people that couldn't manage the 37.5 dose, so they had to swich on 25 mg. I think that  depends on each person and his health, and God.

Wish you all the best and Gos bless all! 

I am on a clinical study where I take a lower dose of Sutent continuously(no two weeks off). I've been on 25mg now for 18 months and while I have severe diareha most other side effects have been tolerable. I agree with the Nexium (Prilosac) for heartburn works well. Again, as others have said the lower dose continuoulsy seems to work for me but it appears each person reacts somewhat differently.

Hi Nancy,  My husband has been on Sutent since January '09....He started on 50mg. and had a lot of blistering and bad side effects.  The 2nd month he was put on 37.5 and has continued to have his 21 tumors in lungs and kidney mass shrink slightly every 2 months.  Side effects are still there but remain ok and still tumors shrink....So hopefully if your husband does try this lower dose he will also do well.....This disese sucks so bad there are no words how much devistation it does to everyone inside and out of the family...God Bless You and hang in there....We all need each other.

Karen of Michigan

Hi Karen,

I just wanted to thank you so very much for your kind response to my question about Sutent.  It is really encouraging to know of others who are on the lower dosage and still doing well.  My husband told me just last night that he is going to try to "tough it out" at the 50 mg dose a while longer, but he thinks he's going to have to go to a lower dosage soon.  He has a horrible wound on his forehead that won't heal, also, and we're hoping the lower dosage will help.  He's going to need a skin graft on that wound, and that scares me, too, because I figure if the wound won't heal then maybe the skin graft won't heal, either.  And he's been through so much already, this is just one more thing.  I am so sick of bad news, Karen.  You are so right....this SUCKS!!  Sounds like your hubby has been through a lot, too.

I'd love to stay in touch with you if you'd like.  My private e-mail address is

--Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html--

.  We have a lot in common since both our husbands are battling this, and we're caught in this horrible nightmare.  I wish you the best, and I'll be keeping you and your husband in my prayers.  Thanks again,

Nancy

Thank you so much to everyone who took the time to answer my question.  I have found so much great support on this forum, and I thank God every day for people like all of you who care so much and are so unselfish to help others.  Thank you!

Nancy

Hi Nancy,  I would love to keep in touch....I have your e-mail address in my book now and hope that we can continue to help each other in this journey!  My husband, Ray, just start another round of sutent last night so he feels fair today.  The 10 days off aren't as good as they use to be and when he starts the meds again it seems as tho he actually feels better for a few days.  How did the wound start on your husbands head?  has it become infected at all?  Make it the best day you can and I so appreciated your letter....Brought tears once again just knowing someone can relate to me and let's try to hold each other up~!  Your friend on the trip!  Karen

Hi Nancy, How are you and your husband doing?  We got snow today here in the Upper Peninsula of Mich....beautiful but frightening to look forward to our long winters and what this season will bring.  Ray's next trip to the oncologist is Oct. 27 so we will know a little about how his blood is doing at that time.....Take care!  Ray''s Wife, Karen