My MDA news wasn't as wonderful as other's as my CT showed some of the lung mets gone, some disintegrating and some doing nothing at all. My bladder is stable though, which is not the usual reaction to the two different chemo cycles I have been on. Four different paths were discussed and two paths were decided on. The decision on which path to try first was made by my insurance company which approved Votrient (pazopanib) for me even though this is an off label use. Additionally one of my previously removed bladder tumors will be tested for a certain protein to see if I qualify for a gene therapy clinical trial. Votrient will only stabilize me, if it works at all. I'll keep my BCAN family informed as I'm kind of trailblazing here, as I don't remember anyone trying Votrient, though some have received Sutent which is also a VEGF inhibitor.

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Dear Cyclingfit,
I am glad to hear there is a drug available to you and that your insurance co. will pay for it. I hope it works and will pray for you. Thank you for posting this as I know it is important to share any news out there so that we all learn, Thanks and good health to you!

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I'm so sorry that the scan results weren't consistently good. Hope you qualify for the gene therapy trial -- I've read good things. Everytime I see your post, I smile at your standard poodle -- name, sex, age? Larry and I have our 3rd and 4th --Ladd (4 & charcoal) & Prissy (7 & apricot). They are such a wonderful breed. They give us comfort and laughs. They both seem to know when larry is up and when he is down. I'm sure yours is a great help to you as well.

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Gail, Carmen is an almost 4 yr old female. She is somewhat "it's all about me", but as she gets older she has become more sympathetic. Like many poodles she is a clown and makes me laugh. I'm also hopeful about the trial. Cheers, Vanna

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We might be right behind you. Our Onco has said that if the Chemo is not shrinking the tumor he might want to try the Pazopanib. This was recommended by MDA, and our understanding is that it has been used successfully for other cancers, not BC but hopefully the results will be the same.

My best to you, trailblaze in a glorious style.


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My dad started pazopanib two days ago. There is a phase 2 study recently that showed a 76% overall response rate for patients who had failed at least 2 prior chemo regimens. Mostly the patients stabilized but several had tumor reductions and 4 of 41 patients were n.e.d. at 19 month follow up. I will write a separate post with the study since I'm typing on a phone and can't link to it, but it was a bladder cancer-specific study. Our doc has treated many renal cell patients with this drug and says its daily we'll tolerated. So far so good for my dad.

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Thank you so much for keeping us updated. I was just about to send you a note and saw this post. My partner Scott (with lung mets) meets with his oncologist tomorrow to review our first scans after dose dense MVAC regimen began. We have 3 cycles of 6-8 under our belt. Been brutal, but Scott did bounce back after each so far.

I'm going to print out the above posts and take them to our meeting tomorrow.
- My understanding is MDA has had you on adriamycin, methotrexate, and Gemzar, correct? Or did you change?
- Our oncologist has told us that Sutent (or possibly Votrient or another similar) could be an experimental option or possibly maintenance program
- Look forward to hearing about the gene therapy option.


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Sorry about the not so good news regarding the scans....but praying for you to see better days ahead.
Thank you for keeping us all posted here on BCAN.
Your post help so many people who are struggeling through similar situations.
I too your dog!!! Dogs are so wonderful! Could not have made it these past two years without the love and comfort
from our four-legged babies.

Thoughts and prayers...

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Dave, yes I did 4 cycles of adriamycin, methotrexate and gemcitibine, but had an incomplete response. Best wishes to you and Scott.

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Cyclingfit, do you have any updates on your husband? My dad has been doing this chemo for a a month or so now and he'll have a scan on June 7th. He's tolerated it well. How are you guys doing?

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Hi Ealund, I am tolerating the drug quite well, except for some minor indigestion probelms. After I had taken the drug for a week I developed hematuria for about a week and then it went away. I was kind of freaking, but the doctor said keep on taking it - so I did. My oncologist in MIssouri recommends a scan after two months, which sounds the route your father's oncologist is taking. I'm going to check with the MDA oncologist to make sure that is the route I am supposed to take. Also I need to know if MDA wants to see me, or I can stay home for the tests. When I left MDA I wasn't approved for Pazopanib, so some information did not get conveyed, such as this. I'll keep your father in my prayers for some excellent results.

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Hi Vanna. Would love to hear an update from you on the Votrient front. We have two doctors with two different opinions about sustainable maintenance therapy. (May go for a third to break the tie). One says, if it were him, he'd do it. He has a patient that is over two years out without her cancer progressing. She was part of a trial of Sutent. The trial was not ruled a success overall, but she is staying on the drug. Our other doctor says there is no proof of efficacy, and he worries about side effects.

My Gosh - I have so many questions, I understand if you don't have time to respond to them all.

Was it MDA that came up with your four paths and the two paths you decided upon? Was gene therapy the other path?

Did you find out results about the protein from your tumor sample to see if you qualify for Gene therapy?

Have you heard anything further about which insurance companies might (or might not) approve Votrient? We have Anthem. That said, our doctor says he might be able to get us on Votrient even if not covered by insurance.

Any updates on your nausea or any other side effects? Have you found anything to be successful for your nausea?

Have you since heard of others here on Votrient?

Did you have any good resources for learning about Votrient or sustainable maintenance therapy.

When is your next scan? It should be soon, no? Hoping for good good news.

Thanks for keeping us updated.

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Dauch, This past week I was thinking of you and Scott, funny how those things go. My ct scan will be at the end of the month. I'll post and let everyone know how it is working. In answer to question number one, yes MDA (Dr. Millikan) gave me the four paths and I picked two paths. Votrient was one and the gene therapy trial was the second path. Votrient allowed me to come home to Missouri and since my insurance covered the treatment, that is the path I chose first. I was first turned down for Votrient if received from the MDA pharmacy, but then was approved by Medco, if I got Votrient came from their "specialty pharmacy". Other than that I don't know which other companies cover it. I don't think my oncologist did test my tumor yet, but I am also curious about it. My biggest side effects from the medication are a horrible taste in my mouth and gastrointestinal gas discomfort at times. There have only been a couple waves of nausea during the almost two months I have been taking it. The second week I was taking the drug I started to have hematuria which cleared up in seven days. I did contact my doctor who said keep taking the pills, so I did. There is another member (Ealund1211) whose father had started on Votrient a couple weeks before I did. Hopefully he is stable. If you search "pazopanib bladder cancer", there is a published study from Italy. Basically most of the patient's cancer stabilized, several had tumor reductions and 4 out of 41 patients were NED at a 19 month follow-up. When my MDA oncologist first brought up Votrient he sounded pleased with the results of other patients he was able to prescribe it to. The listed side effects are many, but it is up to the doctor (and you and Scott) to weigh the benefits and risks depending on any other health issues Scott may have. My quality of life while taking it has been good. All the physical activities I enjoyed before I am able to do. I have sent you a friend request and am happy to answer any other questions you may have.

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Dauch and Diane,

My dad has been taking Votrient for weeks now (maybe close to a couple months?) He has a scan scheduled for Thursday, and we will get the results on Friday morning. I will be sure to post. As far as quality of life goes these last couple of months, my dad has felt TONS better than he did before starting Votrient. He was on another target therapy called Timsirlomous prior to starting Votrient (and many, many other chemos prior to that), and the side effects were much worse with other regimens (of course everyone's reaction is unique). He has experienced fatigue but no nasuea, he has regained his appetite, he has more energy than he did prior to starting the regimen, and he has not had any new cancer-related symptoms. His blood counts have stayed up. He is actually more like his old self than he has been in months. He was nearly homebound when starting the chemo and now is driving around town, doing smalll projects around the house and attending his grandson's baseball games. He did start a low dose steriod for appetite around the same time he started Votrient, so we are not sure how much has to do with the chemo having an effect on the cancer vs. the effects of the low-dose steriod. We are praying that based on his general well-being, this chemo is working for him. Whatever the cause is, we are SO GRATEFUL to have this time where he is doing so well. I know he is as well. He was so sick of being sick. I hope the very best for you, and I will be sure to pass along the results Friday after we receive them. Alice

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Thanks Vanna and Alice. I've friended you both. Nice to have a couple new friends out there going through the same thing.
Thank you for all the information. This will be really helpful when meeting our oncologists and deciding next steps.

Vanna - i'm glad to hear the side effects have been manageable, and Alice, that's such great news that you dad has been able to get out and spend quality time with his grandkids. I've learned so clearly that the simple times can be the best, and just having a yummy breakfast reading the paper together can be special.

Well it sounds like all three of us have scans in the next two or so weeks. Lots of positive scan vibes going out to you and to my Scott. We will probably have some follow up questions, but look forward to hearing how things go.


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