E7080 trial

Hi My mother in law was diagnosed with thyroid cancer 10 years ago .she is now at a point that treatments will no longer work and she is now under the care of The Royal Marsden and about to be put on a trial drug. - e7080. There is no alternative. The hospital is a long drive from us and the journey itself takes it out of her. I have read the side effects etc of e 7080 and have concerns over her well being re travel , side effects etc.she already has problems with sickness and weight loss. Is anyone else / has anyone else. Been on this trial and if so can you advise on the side effects such as weight loss etc and fatigue? Thank u xxxx

Hello. I just read your post.

I have follicular thryoid cancer that's metastasized and is now in my neck & lungs.(Innumerable tumors).

2 radioactive iodine treatments and one clinical trial in the past did not work for me. I am currently in the E7080  phase III trial at MD Anderson Cancer Center in Houston, TX.

I have been on the trial since March and so far, am doing pretty good. My last scans showed shrinkage in some tumors and the rest remain stable.

I have had minimal side effects on this drug but do have stomach issues. I take medicine for that and it does help somewhat. I do get tired sometimes in the afternoon, but not too bad. I have not had a weight loss problem (although I need to lose some weight! LOL!).

I am currently on a 20 mg. dosage because I was reduced from the original 24 mg. a few months ago due to high blood pressure problems. E7080 does cause high blood pressure and I am on 2 different BP meds for that.

All in all, I am very happy with the results of the drug so far. This trial was my only option at this time and I am not a candidate for surgery, traditional chemo or radiation.

Good luck to your mother in law! I wish her the very best!

I started a facebook page for this trial. If you are interested, please feel free to join. 

https://www.facebook.com/ClinicalTrialE7080

Take care,

Diana B, TX

Thank you so much for your lovely reply. Mother I law is just going through the myriad of test , this week and next, to establish the start point.This e mail will bring a great deal of comfort to our family.i hope the treatment continues to be positive - good luck to you as well xxxxxx

Thank you and I wish your mother in law (and your family) all the best!

My doctor told me that he has seen a good response in all the patients he has who are in this trial.

Bless you all.

Diana

Hi Bexter, I too Have been searching for someone who has been on the E7080 trial. I will be starting (possibly) this trial in August at UPENN hospital in Philadelphia PA. I also have ALOT of concern about the side effects, mainly the fact that 12 months on the trial is equivalant to 89 years worth of natural background radiation and can cause a secondary cancer such as leukemia. The trial duration is 36 months.  This bothers me. I am trying to decide now if the risk outweighs the benifit, and I'm not so sure. Best of luck! Halie 

Hi Diana,

Your story sounds very much like my own. I however have papillary thyca whereas you have folicular. My cancer has also spread to my lungs. I was very hopeful that my second big dose of 355 mci of RAI at Johns Hopkins would do the trick, but after waiting a year for improvements, it grew instead. My endocrinologistthere said that I would be in "trouble" in a few years if I didn't do something. He disussed 2 clinical trials with me Veramufanib, (excuse the spelling ), and E7080 as well as two currently available drugs pazopanib and sorafinib.

That left me with a lot to think about. In the meantime I found the onoclogist who actually created the Veramufanib trial. It was her research, her blood sweat and tears. She called me at home and I flew to Philly soon after to see her. I was very excited. However after testing I did not have the B-RATH mutation  that you must have to get in the trial, so that leaves me with the E7080 that she and my endocrinologist from J. Hopkins recommended.That was disappointing!

So here I am getting ready to fly back to Philly on Wednesday to start the screening for the trial and sign the consent. However, I feel very, very, very sick about it. As I  re-read the 40 page protocol a few days ago I noticed something that I had somehow  missed nbefore. I read the part that states that 12 months on the trial is equivilant to 89 years worth of natural background radiation due to the scans they take per the trial protocol. Also that it is possible to develop a secondary cancer. I'm just 35 so I wonder what I will be going through at age 55. That is a scary thought, even scarier to that I could be subjecting myself to all that radiation for a possible sugar pill. I am thinking now that maybe I want to do the pazopanib or the sorafanib instead to limit the radiation.

Have you tried either of those drugs? If so how long did it work? I do feel a little relief after reading that you are doing well on the trial. That's wonderful! How do you feel about the extra radiation? Are you also a member on the Thyca website? Thanks in advance! Halie R, SC

Hi and thank you for your letter. 

I am aware (and hate the fact) that I have to get scans every 2 months. Every time I am in the CT scanner, I think about the radiation I am receiving.

But, at this point, this trial is my only option. The only other thing I could have tried was the pazopanib. Well, that is considered an "off label" drug because it's not approved for thyroid cancer. My stupid insurance company (Cigna) would not approve it since it is an "off label" drug. I would have been able to get this for $30 a month if my insurance would have approved it. But, since it did not, it would have cost us about $8000.00 a month. There is no way we could have ever afforded that. :(

Like I said, the only thing left for me was this trial. And, for the protocol, I have to get the scans so often.

I am 50 years old and think about it all the time that I might develop a second cancer in the future. That scares me to death, but I have no choice.

My cancer had gotten out of hand around December of last year. I have a tumor in my neck that had gotten really large. It was affecting my swallowing since it was near my esophagus. It felt like I was slowly being choked to death. (Like someone's hands were around my neck 24 hours a day). It was unbearable. I also have so many tumors in my chest and lungs. They were making me cough all day long.

Since the trial though, the tumor in my neck has become almost non existent and the ones in my lungs have gotten smaller. I don't cough anymore.

So, that's my story. I have no idea what's going to happen if this E7080 stops working on me. The last trial I was in was almost 2 years ago. It was XL184. It worked for about a year and then my cancer got too smart for it and progressed. Big time.

I wish you well and I do hope we can keep in touch. Good luck to you whatever you decide to do for treatment.

I don't even remember if I am a member of the Thyca website. I have joined so many support group-pages since I was diagnosed over 4 years ago.

Have a wonderful day and bless you!

Diana