Switching from Zelboraf to BRAF/MEK combo questions

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1/11/2014 7:51pm
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Replies: 15

Hello guys, 

From what I've read so far, the switch from Zelboraf to the new BRAF/MEK combo is a big improvement for people. It makes me really happy to see that and I'm hoping it will be a good thing for me.

I still want to know more though!

I started taking Zelboraf as part of a trial to combine it with IL-2 treatment. I since have opted out of the IL-2 for now and am investigating other options. Im still on Zelboraf and have been since November 4th, 2013. 

So far the Zelboraf has worked really well. We have seen a significant decrease in the size of my large lung tumor, which at the moment is the only location of melanoma that can be seen. Ideally it would keep shrinking until it was a size appropriate for a safe surgical removal, but we dont know if thats possible yet. 

Anyways, I have experienced a lot of the unpleasant side effects that come along with Zelboraf. I wasnt handling the full dose well, so my doctors reduced it to 6 pills/day which did help. I'm still dealing with sporadic and sometimes extreme joint pain, lumps under my skin, fatigue, now hair loss and the everlasting sun sensitivity. 

What I'd like to know a little more about are the side effects involving hair loss and sun sensitivity in the new combination.

I've heard it helps with alopecia and this excites me. I have a thick head of hair, but its thinning more and more each day. My eyebrows and eyelashes are very thin. I would love to save my hair if at all possible! Has anyone had success with this or had hair gain after switching?

The worst side effect for me is the sun sensitivity. Ive been this way about 3 months now and with the winter months it has been a little easier, but it wont be winter forever, and i love being outside. I have even been burned while being inside my house. Can anyone tell me if and how this improves with the combo? Does it completely get rid of it? Or just make is less? Or not at all? 

Thanks in advance for any and all responses!

Im hoping to do the switch within the next few weeks.

Best, 

H

Hannah Copeland

Hi Hannah,

I cannot answer your questions regarding burns and hair loss personally since I've not taken Zelboraf or the BRAF/MEK combo.  I have not seen specifics regarding those particular side effects in the literature, but the data is very clear that fewer skin lesions and other side effects occur with the combo than when Zel is taken alone.  And, as a huge plus, effectiveness against melanoma lasts much longer in most patients with the combo as well.  In addition to the combo, some studies show that intermittent dosing schedules help with side effects.  I posted some information regarding the latest studies with the combo on my blog - see posts on Jan 13, 2013 and Nov 6, 2013 (a discussion with Dr. Ribas) that might give you a bit more information if you are interested.

I wish you my very best.  Celeste

chaoticallypreciselifeloveandmelanoma.blogspot.com

Hi, Hannah-

I am sorry that you have to join this community, but you certainly are welcome here. 

I am delighted that you only have one tumor and that it has been shrinking with Zelboraf. That is excellent news! And if it shrinks enough that it can be surgically removed, that will be even better. 

Switching to Tafinlar + Mekinist might be a very good idea. Clinical trials have shown that the combo works better and longer than a BRAF inhibitor alone. Also, as Celest said, the side effects of the combo are less than BRAF alone. 

Unfortunately, most people do experience hair loss on the BRAF inhibitors, including arms and eyebrows. Some people lose more hair than others. After 4 months on Zelboraf, my brother's hair was starting to grow back but it came in slowly and was coarser than his original hair. I don't know if other people have had this experience.

Of course, losing one's hair can be traumatic and can make you look sicker than you are. It might be a good idea for you to go ahead and get a good quality wig made in your prefered color and style so that you don't have to fret more than necessary about the hair issue. I think that there are several charities, including the American Cancer Society, that can help pay for the cost of a wig. 

As for the sun sensitivity, that doesn't go away. As long as you are on a BRAF inhibitor you will need to avoid exposing your skin to the sun. You will also need to be vigilant for basal and squamous cell cancers, too. They grow more slowly than melanoma and seldom metastasize, but you don't want to leave them there too long.

Stage IV melanoma does change  your life in a lot of ways. However, you caught yours early and you have an excellent treatment plan going for you. An awful lot of people here have been able to adjust to this new reality and gone on to live very long and happy lives.  I hope and expect that you will be one of them.  

Hannah, I've been on the GSK combo since August (as my initial Stage IV treatment).  I have light skin and have never been a sun worshipper.  That said, I haven't noticed any increase in sun sensitivity on the combo.  As for hair loss, let's just say that I didn't have a good starting point.  Again though, no noticeable difference to me.  I do have periodic acne and, early on, I did have periodic joint pain and pain on the bottoms of my feet.  The pain was minor enough that I didn't need OTC pain relievers, etc.  in sum, I've had a very positive experience.  I haven't taken Zel.  Gina's husband, Rudy, has had a very positive experience making the switch--perhaps she will respond to you.  My two cents (not a doctor) is that you might aim to get off targeted therapy as soon as possible (so as to leave some dry powder in case you need it later). It sounds like that is your goal (surgery).

Hi Hannah,

My dad was on Zelboraf for a few months and experienced both the hair thinning and photosensitivity. He had a really hard time being outside or even near a window unless the blinds were down. He has always worn sunscreen when outside but started wearing it every day (even when inside for most of the day) and reapplying it throughout the day, which irritated his skin and made him feel rather miserable. A couple things that helped a little were buying some sun-blocking clothing and getting him a nice mild facewash and moisturizer to help his skin deal with the sunscreen.

He switched to the combo awhile ago and I'm happy to share that both of these side effects have been mostly alleviated. His hair looks more like it used to (he has always had a really thick head of hair) and he also is able to take walks outside during the day. He has not had measurable tumor so I can't say anything about how the combo worked for him compared to Z.

I hope your experience is equally positive!

Best,

Doro

Thanks so much Doro!

 

Best to your dad!

Hannah Copeland

Hello Hannah,

I'm very sorry that you have been diagnosed with melanoma. You have come to the right place for support and information that will be of great use to you along your journey to beat this cancer...so welcome and I'll be praying for you.  My husband, Rudy, is stage 4 and currently NED which we attribute to both Zelboraf and the GSK combo. He was on Zel for about 4 months and had significant shrinkage in his tumors from over 15 in his liver to about 4. While on Zel he had severe side effects that were pretty debilitating with joint pain so bad that he could not walk, nodules all over his body that were so painful you couldn't touch him and he did have quite a bit of hair loss (thankfully he started with a thick head of hair) and he completely lost his eyebrows and eyelashes. Those were the just some of the side effects of Zel. He also had to have a dose reduction to 6 pills a day and he did intermittent dosing of alternating 1 week on and 1 week off for a period of time. When the GSK drugs were FDA approved in May of 2013, we received a subscription for him to switch to the combo but the drugs weren't immediately available and so it was not until July 2013 that he started on the combo. 

The good news is that most, if not all, of those side effects went away on switching to the combo.  He got all his hair back and has had no further issues with hair loss or thinning for that matter.  He has occasional joint pain but it's been manageable and some fatigue, but again, manageable.   The side effects over all have been minimal and always grade 1 or 2.   At the end of November of 2013 we got the great news that he currently shows no evidence of disease, so we are thrilled with the job that both Zel and the combo has done for him and we are just praying for the combo to continue working until there is a cure.  Our next step will be PD1 or PD-L if he needs it so we are praying for speedy approval of these drugs!

I must advise that he has been taking alternative approaches as well the most significant being hemp oil that we make ourselves. Google "Phoenix Tears" and "Rick Simpson" and you will be able read about it yourself.  Any further information that you want from me in this regard I will be happy to discuss via private message, and for anybody else who would like to know more please send a private message. I know Spain has gone on record and has data to show that hemp oil is a cure for cancer, however, our government is going to great lengths to hide this information from us. 

In addition, we have completely changed his diet and reduced all sugar intake and processed foods.  I give him lots of vegetables including juicing a bag of carrots, spinach, kale and various other cancer fighting veggies daily.  So, we are using all resources that we have researched and believe to be aiding us in this war against melanoma.  We believe that all of these things have contributed to his NED status and highly advise that others consider some of these approaches. 

Last but most important to us is our faith! We are believers and give all the glory to our Heavenly Father and His Son, Jesus Christ!  We believe in the power of prayer and we are being supported and lifted up by so many fellow believers.  We know that we are not alone in this battle and we are comforted. 

I hope this information is useful to you and, again, you will be in my thoughts and prayers daily!

God Bless you!

Gina (wife of Rudy)

 

"Don't worry about anything; instead, pray about everything. Tell God what you need, and thank Him for all He has done."- Philippians 4:6

Hello again Hannah,

Sorry I forgot to address the sun sensitivity issue.  While on Zel Rudy never got burned but he did feel some sensitivity issues as far as he felt like his skin was burned, but it didn't appear burned.  He never goes outdoors without sunscreen and a big wide brimmed hat, just to be safe.  We also invested in clothing that blocks out the suns harmful rays.  Since he has been on the combo he hasn't had any issues but he still is very careful when he is outdoors. We live in Southern California where the sun is always shining and we spent a week this last August at a beach house and he did not get burned, but again, he was very cautious! 

God Bless you sweetie! 

Gina

"Don't worry about anything; instead, pray about everything. Tell God what you need, and thank Him for all He has done."- Philippians 4:6

Thanks for your detailed response Gina!

I really appreciate it and am happy to hear about the improvements!

Best to you both!

Hannah Copeland

My husband was in Z for 14 mos with brain mets and did great! He switched to combo in Nov.. so far less sun sensitivity (will no for sure this summer) and hair is growing back. He did run into a high fever and chills, so came off for a few wks, back on lower dose, already back up to full dose... fever could also have been side effect of anti seizure meds. Who knows.

Best of luck to you!!

Hi, I've done both, currently on the combo now.  No sun sunsitivity with combo!  On the Z, I got burned with sunscreen with my arm out the window while driving!  Also, no joint pain.  Very very few side effects!  The difference is like nite and day.

best of luck,

Karen

Don't Stop Believing

This is so wonderful to hear! Im so looking forward to switching!

Thanks for your response, and I'm glad you are feeling better!

Hannah Copeland

Great! Thank you!

Best to your husband!

Hannah Copeland

Dear Hannah,

whether correctly I understood: the tumor can be removed with a surgical way while it decreased on Zelboraf's reception?

My Doctors have said yes. At this time my tumor is too big to do a safe surgery. They said though that if it continues to shrink enough on Zelboraf or the  MEK/BRAF combo that i could get it surgically removed.

Hannah Copeland

Zelboraft is often used dto reduce the tumpor load/size so that an operation can be performed with out as much danger to the patient.   Since Zelboraf by itself stopes working within one year on many patients, this is often done.  The combo has not been used long enough to know it's longterm effect and whethet a perment CURE can be received.

I'm me, not a statistic. Praying to not be one for years yet.