Zelboraf experience Stage IV

  • I have been on Zelboraf for Stage IV on my 6th month. Originally started with the clinical trial at Sammons Baylor Cancer Center in Dallas. Have liver tumor and has spread to ribs, sternum, clavical, femur, sacrum. Getting ready for 6 month scans. Medicine typically stops working on average after 5-7 months. Anyone on this drug to share experience? Yervoy and Zelboraf were both approved by the FDA at the same time but Yervoy seems to be more popoular. Im braf positive and have Crohns which prevented me from going on yervoy. Havent really found anyone on Zelboraf to discuss. I welcome any info.



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  • Hey Kim! I'm taking Zelboraf right now and am going for my 2 month scans on Monday. I hope to get good news!

    Are you having a good experience on the drug? Did it work? I have had some side effects: rash, severe joint pain and loss of body hair.

    I read on another message board that a man was on Zelboraf for over 17 months and it was still working for him! It gives me hope!!!

  • Hello! I have been on Zelboraf since September 27, 2011. It has been like a miracle for me. I was diagnosed with stage III melanoma in April 2011, did interferon (it failed miserably) and was at stage IV by August 2011. Tumors spread to liver, lungs, lymph nodes in neck, and palpable tumors around my rib cage and right calf. Had a scan about 2 weeks ago and everything is gone, along with all pain and discomfort related to my tumors. I had severe body rash and painful red welts from Zelboraf, along with dry irritated skin. The welts come and go. Also, I have had joint pain and pains in the bottom of my feet. Zelboraf side effects are nothing compared to interferon, thank goodness! Doctors are very positive about my response and how fast everything has worked.

    I also cannot say for sure if this has helped, but I wanted to share this with others, because I have a strong sense it has helped me. I completely dropped dairy and cut way back on meat and sugar in my diet right after starting Zelboraf. I was on an extreme low carb diet for about 4 months before my stage III diagnosis (lots of dairy, meat, fats). Of course, I cannot say for sure if any of these things are related, but I definitely feel healthier (especially without the dairy). I'm not endorsing any particular diet, but I have had such good results over the last few months, I hate to keep quiet about it.

    Thanks!!

  • I had a severe rash and had to cut back on my doseage to 6 pills a day instead of 8, my cancer pain went away at first but now have sever joint pain. Its hard to tell if the pain is from the cancer or the zelboraf inflammation. Doctor prescribed oxy- codone and celebrex and it helps. I have had body hair loss, hair thining and my eyebrows are almost gone. I had incredible results after the first 2 months and my liver tumor shrunk about 90%. Dr Cowey at Baylor Dallas said he hadnt had anyone respond that well in such a short period of time. Glad to hear someone has been on it 17 months. I heard average is 5-7 months. which makes me a little anxious. Not sure what my next treatment would be. I was in the clinical trial before it was FDA approved so maybe a comibnation drug. Still working full time which is great and trying to balance it all. I hope everyone has as good of results as I did. Chosing Hope over fear!

  • I have Stage IV Melanoma. Diagnosed July 8, 2008. I have been on interferon, biochemo, and now I am on Zelboraf. I started Zelboraf on April 20, 2010. I have had ZERO reoccurance and very few side effects. I take 720 mg in the morning and 720 mg in the evening. I am currently at Vanderbilt in Nashivlle TN and since I started in a trial for this drug I am continuing with the trial for now, even tho I live in KS and the drug is FDA approved. I am currently cancer free!! My LDH level is totally normal and the two tumors that actually got me in to the trial are gone! Life is good! I am so grateful for this drug!

  • Heather - that's awesome!!

    I finished my 12 weeks of ipi (Yervoy) two weeks ago and went right away onto Zelboraf (940mg twice a day) because, though the tumors in my lung stopped growing, the tumors in my abdominal area just went wild with a tumor on my right ovary measuring 15x8.6 cm and a tumor on my left ovary at 10x4cm as well as a whole bunch of otheres in there that have left me looking pregnant, lovely! The only thing I have noticed so far on Zelboraf is that I've had a constant dull throbbing headache since Sunday (5 days into treatment). I can't tell if its just a seasonal headache (I get migraines/clusters/sinus - you name it!), the ipi, or the Zelboraf. Timing was great though, I had a brain MRI yesterday so if my pituitary gland or anything else is being effected, we'll know.

    I'm not happy to hear about the hair loss - my hair is finally coming back in now from the whole brain radiation I had in December! But if it kicks the butt on these tumors, I can't complain that much.

    I too tend to think about the magic 7-month window that Zelboraf is supposed to work but then I tell myself that its just a statistic, like all the statistics we are battling and I try not to focus on them. So much research is being done right now to 'fix' the Zelboraf that I have to just remain optimistic that the current meds will allow us to fight long enough to see a vaccine come out.

    God bless and I pray that we all feel well enough to be able to celebrate Easter or Passover with our families! ~Angi

  • I posted this in another forum topic first but wanted to make sure that the rest of us stage iv peeps see it as well :)

    Well, one full week into Zelboraf (940mg twice a day) and oh my gosh do I have the worst rash!! I thought it was from the ipi still in my system but my nurse called to check on me today and she said that one is probably from the Zelboraf. What's interesting is that the rash is only in the areas where I have tumors - my scalp (I have brain mets) and my entire front/back torso. I have just light itching on my arms, legs, and face. The rash just seemed to really explode yesterday and I was put on a prescription lotion for it. I've never felt the need to rip my skin off as I do right now! For me though, Gold Bond Anti-Itch lotion seems to work the best because it has menthol in it which at least gives me another sensation to feel other than insane itching!

    Besides that, I've had some intense stomach cramps and a dull throbbing headache for about 3-4 days. I don't know if they are related to the Zelboraf or not. I think this medicine is still too new for the drug co to really know all of the potential side effects so I'd be curious to see if anyone else is having these same ones. I'm hoping that as the weeks go on, the side effects subside and I really hope I don't get the side effect of hair loss - my hair is just now growing back from the whole brain radiation!! ~Angi

  • FYI for anyone who's trying to deal with the rash/hives: my oncologist had me see Memorial Sloan Kettering's dermatologist who specializes in skin conditions associated with chemo meds. After pausing the Zelboraf, he had me take a 6 day steroid dose pack, Methylprednisolone 4mg, to alleviate the rash. After just one day, there was a remarkable difference in my rash! By the end of day 3 I felt almost 100% better. Prior to the steroids, I was also on 25mg of Atarax for the itching which modestly helped but nothing like the steroids.

  • My husband is starting zelboraf next week to treat stage 4 metastic melanoma. Had previously been on yervoy. Does anyone know what the protocol is for checking for tumor shrinkage? How long are you on it before they check you again? Anyone have advice on side effects?

  • Beth, my oncologist is having me get CT scans about every 6 weeks and my neuro-oncologist has me have a MRI every 2 months. Like everyone else, the joint pain is the worst. And like Cindy, I too have extreme plain on the bottoms of my feet - the padding part. My dr always looks at me curiously when I tell her about that, I guess it's not a widely known side effect. For the joint pain, oxy and muscle relaxers didn't help, only Advil or Aleve! I'm allowed to use them as long as my liver levels are good. But Beth don't be disheartened, for me, I can have a good 3 or 4 days without any joint pain or days where it's barely painful. I also had the rash which very quickly went from an annoying itch on both sides of my abdomen to a very irritating head to toe rash that would prevent me from sleeping. There was not a cream or pill that helped so finally I took pictures of myself and sent them to my oncologist to see if my rash was normal. She had me stop the Zelboraf, start a steroid dose pack and within a day I started to get relief. I restarted the Zelboraf a week later along with 5mg of prednisone. That was about a month ago and other than small welts on a few fingers, I've had no more rash, just the joint pain and bottom of my feet pain.

    Be very careful though w sun exposure while on Zelboraf! I got a burn from just sitting in my car for 2 quick back/forth errands trips!

  • Beth- typically at the beginning he will have scans every 8 weeks. If his tumors are in a place where he can feels them, he should notice a difference within the first week. I had one tumor I could feel and it was half the size with in 3 days! As for side effects, rash is a possibility. I had a bad rash on 960mg, but once I went down to 720mg, I never had it again. Joint pain, for sure. At first it was really bad, however, I have been on the drug for over 2 years now and honestly the joint pain really isnt a big deal now. I do have major sun sensitivity, which is a major pain in the butt! The only thing that seems to work for that is staying inside! ugh! Cant do that tho! And I have a rare side effect called Erythema nodosum which causes odd lumps on my legs and arms, but Im ok with it. As long as the cancer stays far far away, I will deal with whatever side effect comes my way! We have a group on FB, called Bad Ass Melanoma Warriors that has been really helpful. If anyone would like to be added to that group, let me know and I can add u! Lots of helpful people on there!

  • Heather - I have the lumps too! Mine are painful to the touch, are yours? At first they were just on my thighs, some as big as marbles but then when my dose was lowered, they at first disappeared and now have reappeared on all my limbs. I think they are also on the pads of my feet and that's what is making them so tender. Thats good to know that the joint pain eventually goes away - that or you might have just gotten used to it! My dr has me on 5mg of prednisone for the side effects and it somewhat helps with the joint pain.

    ** I would love to be added to your melanoma warrior page too!

  • Oh it sounds like u have joined the lumpy group:) We r small but proud! lol! My lumps are on my legs and arms and sometimes my bootie or waist. Mine hurt for like three days then start to shrink down. Now they just bruise me. My legs look lovely! But oh well. Its a small price to pay to be cancer free. I do take 4 ibuprofren twice a day and that really seems to help with the lumps. U might try that. Ive tried to cut back to just 3 a day and that doesnt work for me. Ill send u a friend request then I can add u our group. Its quite helpful for asking questions.

  • My husband starts his first zelboraf dose tonight....how long after did people start experiencing the rash? And anybody experience these lesions they talk about as a side effect? We're very anxious about the next few days....

  • Tammy,

    For me it's hard to say because I literally had my last Yervoy iv and then immediately started Zelboraf so it was hard to tell which side effects were from one med vs the other. I started at 940 mg twice a day and it was rather quickly that I developed the rash. It started as an insane itch along my abdomen and then spread to my back and ribcage. It got to where I felt like I was going to lose my mind if I didnt get the itching to stop. At the same time, I had red, painful bumps developing on my thighs and was experiencing joint pain. I sent pictures to my dr and she had me come into urgent care. I was immediately taken off Zelboraf and given a 5 day taper-down steroid pack that worked on the rash within 24 hrs, it was wonderful!

    It took a little trial and error (more rash, bumps) to have my doctor figure out that 720 mg twice a day was the right dosage along with 5mg of Prednisone. It's agreed with my body much more and the tumors are shrinking. I did try to get off the Prednisone (per dr ok) was taking only 2.5 mg this past week but very quickly the joint pain, painful bumps and fatigue set back in. So for me, I need to stay on the 5mg of Prednisone to keep the side effects at bay. All in all though the side effects are still more gentle than the Yervoy IV.

    Hope this helps! Angi

  • I have stage IV metastatic melanoma. I have been on Zelboraf for three months. I had scans at 2 months and my tumors had shrunk by half! I have random joint pain and thickening of the calluses on the bottom of my foot. Causes pain to walk. I have only one leg (had bone cancer when I was 16). I am sun sensitive but now I seem not to be. I am worried the drug has stopped working. I am going to call my Dr. but I am in a panic. This is working so I don't want it to stop. I also had 2 basil cell carcinomas removed. They can grow as a side effect of the drug.

  • My husband was diagnosed with stage II nodular melanoma in Sept 2011. He had surgery in Dec 2011. By March 2012 it was at stage III. He started radiation and Temodar in April 2012. After it was apparent the radiation/Temodar wasn't working he had a needle biopsy done. Positive, now at stage IV. He was BRAF+ and started on Zelboraf on May 6. The side affects started immediately. They include sensitivity to sunlight, rash from head to toe, joint pain, hair loss, exhaustion and numerous squamous cell carcinomas (nine have been removed). He was on the full dose, but due to the severity of the side effects the dosage was reduce to 720 mg am and pm. He has not had a CT scan since he started the Zelboraf. He has over 50 skin mets that have not changed since starting the Zelboraf. He has new skin mets on his chest and back. His left side is extremely swollen and tight. The last CT scan in April didn't show any tumors on his left side, just the mets. It did show he had small areas that *may* be melanoma on his right kidney and right lung. His onc doesn't seem to be too concerned about the swelling. He also has severe lymphedema in his left leg that his onc is hesitant to treat. He is to the point of not knowing where to turn for help.

  • My husband has been taking Zelboraf for one month now. Side effects as everyone, extreme sensitivity to the sun, no exaggeration, burns within minutes, even with sunscreen. Every body part needs to be covered. But the joint pain is substantial, stiff in the morning, nut much better during the day. Pain under the feet, or ankles, or knees, hands or any combination of all of those. He'll take ibuprofen occasionally but doesn't notice a big enough difference to bother. Can anyone give insight into whether or not the pain subsides over time on the med? Or does it get worse, stay the same??

    TX

  • Tammy,

    After my husband's dosage was reduced to 720 mg his pain subsided greatly. Just last week his onc raised the dose back up to 960 mg. So far, aside from the fatigue, the other side effects have not increased any. I have read that there are some people that can handle Zelboraf very well on the full dosage, but most have such bad side effects that the dosage has to be reduced. The side effects your husband is experiencing need to be reported to his oncologist as well as to Genentech (the manufacturer of Zelboraf). You can go to Zelboraf.com to contact them.

  • Tammy,

    The only thing that helped me with the pain you are describing was lowering the Zelboraf to 720mg and adding 5mg of Prednisone. Now I have hardly any joint or muscle pain.

  • After ten days of having different symptoms, (weight loss, some dehydration, loss of appetite, reflux, ) we took my husband to the hospital and it turns out liver enzymes are up. Oncologist took him off meds until Thursday when he gets new blood and urine tests done, and CT SCAN tomorrow. We're wondering if they will adjust the dosage or take him off Zelboraf completely. I don't know his numbers. Has anybody encountered liver problems?

  • After ten days of having different symptoms, (weight loss, some dehydration, loss of appetite, reflux, ) we took my husband to the hospital and it turns out liver enzymes are up. Oncologist took him off meds until Thursday when he gets new blood and urine tests done, and CT SCAN tomorrow. We're wondering if they will adjust the dosage or take him off Zelboraf completely. I don't know his numbers. Has anybody encountered liver problems?

  • Melanoma is on my father's skin,his lungs 5,his kidneys,his surrenals,osafaegus,muscles,abdomans and he has a severe chest pain from metastazis..We will take zelboraf on Monday.Which time is to effective this drug?how many days later ?we are very sad and anxiotus.I love him very much and dont want to lost:(..sorry for english.

  • Ayse,

    I am very sorry to hear about your father.

    Each person is different and reacts to medications differently and at a different rate. With my husband, his side effects started two days after he began taking the Zelboraf.

  • Thanks, Valeria..My dad began to take zelboraf 4 piece morning and 4 evening yesterday.He is fatigue and pick at one's food.I hope ,this drug is benefit for everyone and side effects is small..I will read Zelboraf.com.Valeria,,I pray for your husband and all melanama people.

  • Not sure if anyone still posts here? would love to join the bad ass melanoma warriors group if that is still available! my husband was diagnosed in january 2012 with Stage lV MM-primary never found, mets to lymph nodes, liver, spine hip.

    He started on Zelboraf in Feb 2012. Amazing results, given his initial prognosis. Scans showed continued reduction in all tumors - onc has even used the word REMISSION!!

    My 2 big concerns:

    1-Seems he's one of the long-term PF patients at this point?! So scary, though...feel like the future is just so uncertain!! How are others who have been on this med for a while doing?

    2-Definitely is coping with the side effects others have mentioned. Gets sunburned through the windshield of the car, serious joint pain, tiredness, super thick and painful spots on his hands & feet, hair loss, and bumps filled with stinky white stuff that itch & hurt all over his body, even his eyes!! also just had an abnormal EKG which means now we have to add a cardiologist to the mix.

    Onc doesn't seem concerned with side effects, we should just be happy the Z is working. Agree to a point, but see that some others here have found relief from the skin issues w/prednisone. Worth bringing up to onc? Any input/replies would be super!!

    Love and prayers to all the warriors here!