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Zelboraf (Vemurafenib)

Williamryan
Posts: 27
Joined: Dec 2012

Has anyone with thyroid cancer that is resistent to RI-131 treatment ever been treated with Zelboraf?  If so, please let me know your experience and results. 

Thanks,Bill

Hannah1
Posts: 63
Joined: Jun 2012

Hi Bill , I was just wandering if you ever  started on this drug. I just went to Md Anderson 

and this is what  he recommended me to start when that time comes.  Or has anyone out 

there has ever used this drug. I heard that the side effects is very strong. Please let me know

Thank you. 

Williamryan
Posts: 27
Joined: Dec 2012

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

Williamryan
Posts: 27
Joined: Dec 2012

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

Hannah1
Posts: 63
Joined: Jun 2012

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
Posts: 27
Joined: Dec 2012

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

Hannah1
Posts: 63
Joined: Jun 2012

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. 

PamAtch
Posts: 1
Joined: Sep 2013

Hi Bill, I just found this blog today and was reading your post. My husband has Pappilary TC with an abnormal BRAF. When he was finally diagnosed the cancer had invaded his trachea and was rushed to San Francisco for emergency surgery to open his airway. His particular cancer is extremely aggressive. He went on the Nexavar for a short duration but the side effects were too extreme for him to continue. He is supposed to start the Zelboraf tomorrow. I was wondering if you had started the Zelboraf yet and how it's going. I asked the infusion pharmacist today if Ron could start on a lower dose and build up as his body gets used to it. She said no. Ron's oncologist is out of town until the 16th but I placed a call to the dept. and asked for whoever is covering for him to call me. Haven't heard yet and am concerned about him starting with a full dose. What are your thoughts? I hope you are doing well.

All the best,

Pam

Williamryan
Posts: 27
Joined: Dec 2012

Pam,

Sorry to hear about your husband's situation.  Yes, this type of papillary thyroid cancer with bRAF mutation is aggressive.  Did the cancer spread directly to his trachea or were there lymph nodes involved pressing up against his trachea?  Yes, the Nexavar is the most commonly used chemo treatment for this type of thyroid cancer although it's effectiveness is varied.  Although Zelboraf, designed and treated for melanoa with bRAF mutation, is now being used for this type of thyroid cancer.  The clinical trials are vague and minimal, meaning that the effectiveness is based on only a handful of clinical trials.  The FDA just approved this drug for this cancer in June 2013.  Unfortunately I had severe side effects within 5 days, i.e. cardio issues (extremely high blood pressure and rapid heart rate), severe scalp itching which was finding it's way down my body, GI issues, nausea and fatigue.  I was able to manage the nausea and fatigue, although the itching and cardio issues were the symptoms / side effects that determined that this treatment be stopped, especially since they appeared so early in the treatment process. 

Unfortunately, there is very little information from the clinical trials to determine if a lower dose is initially started then gradually increased is effective.  I did come across an article that recommended this approach, although I don't think the medical community (oncology pharmacistis included) are well versed or gets the needed attention (increased funding for research and more clinical trials) on this type of cancer and it's possible treatment approaches, as compared to other common cancers, i.e. breast, prostrate, lymphoma, etc.  I think docs who are now treating this type of thyroid cancer do not have a "compass" for an appropriate treatment modality / approach.  Each doc can approach this differently with different outcomes. 

I started radiation today (28 treatment sessions).  My cancer has spread to my lymph nodes (3 total measuring up to 2" x 3") in my chest, very near my heart, lungs, trachea and esophagus.  There is very little information regarding the effectiveness of radiation on this type of thyroid cancer.  This treatment is the last ditch effort for me.  There will be uncompfortable side effects, especially with the esophagus and trachea. 

Let me know your oncologist's input regarding the dosage for zelboraf.  Personally, speaking from my own experience with zelboraf, I feel that starting out on a lower dose then increasing through time would be the best approach.  Although again, there is absolutely no information to support this.  Really interested in his / her opinion as again, each doc has their own opinion and treatment approach.

Thanks, Bill

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