Zelboraf (Vemurafenib)

Williamryan said:

Selboraf

Hannah,

I was prescribed this because the drug focuses and interrupts the bRAF mutation path and showed promise through recent clinical trials and recent FDA approval for this type of cancer.  This drug was designed for patients with melanoma, as the same bRAF mutation exists.  Unfortunately, I only took it for 5 days and was immediately taken off due to severe side effects (grades 3 ad 4), i.e. rash, itching, puffiness of the face, cardiovascular issues (high blood pressure, high and rapid heart rate - I have a bad mitrel heart valve) and headache.  My onc would not decrease the dose, which was 960mg twice daily.  In my readings, it stated that patients with this type of cancer and is prescribed zelboraf, the dosage needs to start at a low dose (240 to 480mg twice daily) then increase through time.  My onc did not acknowledge this approach.  I was then prescribed Nexavar at a half dose (200mg twice daily) due to my reactions with zelboraf.  Unfortunately, I had to be taken off nexavar after two weeks due to the same or even worse side effects. 

I am being evaluated for possible radiation treatment, but have not yet met with those docs.  Debulking surgery is out of the question due to the location of the cancerous lymph nodes (deep within my chest) and possible post surgery complications.  I feel stuck and helpless at this time.  So far, recent bone scans shows the cancer has not spread to the bones and my recent PET scan showed minimal growth (4mm) over the past 4 month.

Let me know how you react to the zelboraf, very interested to hear how well you are able to tolerate this drug.

Thinking of you, Bill

Hi Bill, thank you for answering back. I have thyroid cancer metastasize to my lungs. I have multiple

nodules on both lungs, the biggest one now  I think is 1.6cmaccording to the Dr. at Md Anderson. I am 

also Braf positive. I haven't started on any medication yet. This is the drug he recommended  when that

time comes. I just went to Md Anderson for second opinion. My lung nodules are growing slowly as per Dr. 

He said he will start first with nexavar but because of the severe side effects  he s still weighing quality of life. 

I don't have any symptoms but my thyroglobuLin is elevated. That's why they been monitoring me. Did you have 

any symptoms? Why did they start you on chemo? God bless. 

Williamryan said:

Nexavar vs Zelboraf

Hanna,

The reason why my 1st onc dr prescribed zelboraf is because I am bRAF positive as well.  Zelboraf is designed to treat melanoma with bRAF mutation as this drug inhibits the pathway of the bRAF growth.  That is the only reason he prescribed this to me.  Since I could not tolerate the side effects, especially after a few days, this was not a viable option.  I would ask your dr if he does prescribe zelboraf will he start you off at a lower dose then gradually increase through time, depending upon effectiveness and side effects. 

The nexavar is the most commonly prescribed drug for our type of cancer.  It is designated for patients who have kidney and liver cancer, as this drug restricts the blood flow to the cancer cells, thus minimizing it's growth and hopefully stablize the tumor if not shrink them.  Unfortunately, I was not able to tolerate the side effects.  The most common side effects, which I had and was able to manage, was GI issues, nausea, fatigue and blisters on my hands and fingers.  Although the other side effects that prohibited me from continuing this course of treatment was cardiovascular issues (i.e. high blood pressure and very rapid heart rate), ulcers thorough my mouth (tongue, inside of lips and cheeks, gums, roof of mouth and throat).  Those two side effects were rated at grade 4 (on a scale of 1 to 4, with 4 being the worst).  Fortunately my cancer has not spread to the lungs, although it has spread to multiple lymph nodes in my chest and neck.  I had the two lymph nodes surgically removed in Feb 2013 and remains clear.  Although the lymph nodes in my chest (3 all together, which are side by side) have grown and my thyrogobolin antibodies continue to rise.  My last ditch effort will be radiation, which I will start in two weeks.  The insurance company will not approve the most effective treatment called IMRT because there is no scientific data to support the effectiveness of this treatment...because this is such a rare type of thyroid cancer and there is no protocal treatment, only chemo that has been used via clinical trials.  My radiation onc dr said I am his 3rd patient in his 30 years of practice with this type of cancer, and fortunately, the other two patients have gone into remission or have stablized their tumors (no continued growth).  He will be using a 3D approach with low dosages, since the lymph nodes are sitting right above my heart and around my esphogus. 

I'm sorry to hear about your lymph nodes speading to your lungs.  Fortunately, history has shown that this is a slow growing cancer.  Not sure if lungs can be radiated.  I am asymptomatic, play racquetball 3 times weekly, good appetite and most important is a good attitude and a strong spirituality.  All we can do is hope that some sort of treatment becomes available in the next few years, although since very few individuals have this type of cancer, it does not get the recognizition and funding for research as compared to breast, prostrate, and other types of more typical cancers. 

I did travel to Memorial Sloan Kettering Cancer Center in NYC twice in the past year for consultation.  They were in the middle of a clinical trial although it has since been stopped after entering Phase III.  No information was available regarding the reasoning for stopping the trial or any information regarding results from Phase I and II.  There are not many clinical trials for this type of cancer.  My original ENT doc had consulted with John Hopkins and MD Anderson when I was first diagnosed with this cancer 15 months ago and at that time their recommendations were either to do nothing and monitor or explore the two chemo drugs that we have already touched base about.  If the lymph nodes were accessible for surgery, then explore that option.  Unfortunately, only the two in my neck were accessible.

Let me know what your doc eventually recommends and I will keep you posted on my radiation treatment.

Cheers, Bill

Hi Bill

 Good luck with your radiation. Are you having any symptoms that's why you are having radiation?  I know the chemo

drugs have severe side effects. That why my dr.s doesn't want me start on chemo yet till I get symptoms. I feel great right

now. But my nodules in my lungs are growing i think he said 30% in 6 months. My next ct scan is on dec. i think radiation

Is not an option for me because I have multiple nodules on both my lungs. Dr. In MD Anderson said that only one drug was 

approved for thyroid cancer which is nexavar. Hopefully within the next few years they might come up with another drug. 

Did you work when you were taking those chemo drugs. Im glad you are keeping yourself busy  thats the way to go.Keep up that high spirit. Take one day at a time and enjoy. Take care and god bless. Keep me posted.