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January 25, 2013 at 12:46 am #20960
I finished the 5 Cyberknife treatments last Fri. They were spread over a 2 week period. The same day I started Cyberknife I started Zelboraf. I got a bad case of esophagitis from Cyberknife and a radiation burn on my chest. I had an appt yesterday with my Oncologist yesterday and I was explaining about how difficult it was to swallow 8 huge pills a day even with the lidocaine/mylanta mixture. He suggested to take a break from the Zelboraf untill esophagitis clears up. While on Zelboraf I started to have severe pain in both legs that would last about 6-7 hrs and occurred at different times. Rest or activity did not seem to affect it. My Onc said we will find out if its the Zelboraf and it goes away. I was wondering if anyone else has had a similar experience. My other side effects were skin related. I have to go to The Melanoma center 1x a month for skin checks while on Z since I have had both BCC and SCC. So I would like to hear from anyone with leg pain while on Z. The pain was so bad each time I almost went to the ER.
Mary SueJanuary 25, 2013 at 2:48 am #58798erinmay22Participant
Mary Sue –
It could very well be the Z. I had HORRIBLE joint pain. It got better on a reduced dose but it was bad even with 3/3 per day. I remember being almost in tears just trying to hold a pen to write or driving to work. I would wake up with my jaw hurting because I’m pretty sure I was clenching my teeth at night in my sleep from pain. It’s rough. Hang in there!
And yes those horse pills are hard to swallow!
Prayers your way to be more comfortable!
ErinJanuary 25, 2013 at 8:01 am #58799patiParticipant
what do you mean by “pain leg”,
If you mean horrible arthritis each joint and bone and muscle aches?, yes that is zelby acting…my pain was so unbearable all over legs, feet, hands head bones – I could not wipe myself after peeing, I could not walk, could not sleep, hug my kids etc…I ended up getting the shivers so bad one night ended up in ER (it was the extreme inflammation all over, my CRP was through the roof), I also lost lots of body hair and hair, had horrible skin red patches, rough, and then there were these under the skin nodes (first though they were mets) but they quickly become red and painful mostly over butt and legs (paniculitis inflammation nodules) and then there were feet and hand nodules and pain like walking on razor blades…it was horrible BUT the good news is:
The drug acts fast so psychological you feel better and if under pain you will hurt less from tumors
a) you can work with dosage, all my symptoms became bearable at half dose and I still got a second response (and are getting a third response)
b) symptoms tend to get better with time,
c) mine were worst when I had /have my period so clearly something hormonal going on.
Zelby is a good bridge or rest place to enjoy life with melJanuary 25, 2013 at 10:17 pm #58800
Thanks Erin and Pati
This was not joint pain. I think its muscle. I haven’t had it today. I think not taking the Zelboraf is making it go away. That makes me worried that I am not going to have an easy time with the Zelboraf. One of the lesser known side effects listed is myalgia which means muscle pain. When I restart the Zelboraf if it comes back I will call the help line.
Mary SueJanuary 28, 2013 at 12:01 am #58801Shirley ZParticipant
Hi Mary Sue,
Just wanted you to know you’ve been in my thoughts and prayers.
From what Pati and Erin have said it sounds like the pain was from the Zelborab. I sure hope the symptoms are less painful when you continue with it.
Happy to hear the cyperknife is finished. Hope you start feeling better soon.
Shirley ZJanuary 30, 2013 at 3:54 am #58802jenjenbakerParticipant
I scheduled to start the Zelboraf in a few weeks. I’m so thankful someone recommended this site to me. So much useful information. It’s also helpful reading fellow warriors side effects of this medicine to better prepare myself for what lies ahead.January 30, 2013 at 5:15 pm #58803 Hi Jenjen
I am restarting my Zelboraf today after a break due to esophagitis from radiation. I really was just starting to have major side effects when I stopped. It’s hard to take medicine that you know is going to make you feel bad but I guess you have to look at the bigger picture. My rash on my face and chest had stopped itching but was still extremely red and dry.The joint pain and fatigue was gone and the painful nodules under the skin were still there but no longer painful. I think my side effects started at 1 week and by week 2 were really starting to get more evident. I am in Florida visiting a friend so staying out of the sun will take some effort. Let us know how you do and I’ll do the same.
Mary SueJanuary 31, 2013 at 2:34 am #58804NYKarenParticipant
Hi Mary Sue,
I seem to be following you again.
The leg pain is horrible. I’ve been on a 1-week rest from Zel, going to the onc on Thursday.
Have been on 5-10 mg of prednisone, which is fabulous for the joint pain, but that leg pain continues. I have to wonder if something else is going on, as when the pain is not bilateral, i still have intense pain in the right. Side effects from pred include perpetual sweating– wonderful at business meetings. No help from Alleve, oxy or even dilaudid. I’m going for acupuncture at Sloan on Friday. It’s fee-for-service but i was happily shocked to find my insurance will reimburse 70%. Expect to resume Zel on thurs. on a 3/3 schedule with maybe 3 weeks on, one week off, just like the mice.
Other than that, Zel has been a miracle for me. My ENT almost fell off his stool to find an almost-clear ear–he thinks it’s just dead tissue remaining. He kept saying “amen, amen.”
My scalp is completely flat. My face is flat but pigment remains…may be permanent– I can live with that!
I have you to thank, Mary Sue. Words cannot express my gratitude and appreciation.
I wonder if anyone knows if, when GSK MEK inhibitor is approved, will we be able to use it with Zel? Will we switch to the GSK combo? Will we have to wait till Zel stops working?
I guess time will tell.
KarenJanuary 31, 2013 at 3:44 am #58805
I am glad to hear you had the same muscle pain. Don’t wish you any harm but I couldn’t find anyone that seemed to have the muscle pain. My Onc asked me to describe the pain and I had a hard time describing it. The only thing I could think of was the type of muscle pain I get when I have a fever but a hundred times worse. I was actually crying at times it was so bad. None of my pain meds even touched it. It would spontaneously go away after five or six hours only to return later the same day or the next. I restarted my Zelboraf today so I’ll see what happens. I was actually thinking of asking my Onc of an on and off schedule for the Z. As far as the Braf retesting we have my Onc to thank for that. He said when I progressed to stage 4 he just wanted to double check to confirm I was neg and was shocked when it came back pos. Everytime I read that someone is Braf neg I want to urge them to retest to make sure. If my muscle pain returns I will know it was the Z. I’m glad to hear of your good results and hope we both continue with good results. In the 2 weeks off all of my side effects went away except for my face,neck and chest rash. My face is still extremely red and feels like sandpaper but doesn’t itch like it did. Keep me posted and I will do the same.
Mary SueJanuary 31, 2013 at 8:42 pm #58806NYKarenParticipant
Hi Mary Sue,
Yes, the sandpaper face! I thought that was just me because i have mets (or their remanents) on my face. But I don’t have the rash (yet), thankfully.
So I just saw my onc, he ordered a leg ultrasound to rule out a blood clot, because i did have pain in my left leg before starting Zel. Then we’ll go from there. I’m getting off the Pred. by the weekend to see if that has made the pain worse.
Also going for acupuncture tomorrow afternoon…can’t wait!
My dosing will be 3 tablets 2x/day, 3 weeks on, 2 weeks off. He originally said three on, three off, but that sounded too scary to me so we compromised. So I get another week off.
Interestingly, after next round of Zel, onc. wants a little of whatever’s left on my face to be scraped so we can see if the mel’s still alive.
oh, yes, what is your doctor’s name? Mine wants to thank him.
Let’s keep in touch.
karen If it’s ok, pls. ask Catharine to forward me your email.February 1, 2013 at 3:16 am #58807PatWParticipant
I had to laugh when you said that your Zelboraf dosing schedule is “just like the mice”.
😆I love it when you melanoma warriors can actually find some humor in an otherwise bleak situation.
By the way, regarding the mice (Karen is referring to a recent study in mice that showed that alternating on/off Zelboraf helps to prevent resistance and extends the time the drug works)– what the study authors said was that melanoma cells that became resistant to Zelboraf actually became DEPENDENT on Zelboraf! During the hiatus from Zelboraf, the resistant melanoma cells died off in about 10 days. Then when they gave Z to the mice again, it again killed the non-resistant melanoma. So really, 3 weeks on and 3 weeks off is quite reasonable. But 3 on and 2 off will probably be fine, too. Three on and 1 off would not be in accord with the findings in the report.February 1, 2013 at 4:24 am #58808
My local medical Oncologist ‘s name is Dr. Sayed Ali. He is associated with Fauquier Hospital in Warrenton Va. He is a general medical Oncologist but seems up to speed on everything. I also go to a Melanoma Center at Washington Hospital Center in D.C. That is where I have my skin checks and have had most of my surgeries. I see a Derm/Onc,Surgical Onc and another medical Onc who specializes in Melanoma. I also recently had Cyberknife at Georgetown University in D.C. with another whole set of Dr’s. I have more doctors than friends! I am definitely going to ask about the on/off schedule. I also had read that study just days before you mentioned it. I restarted my Zelboraf yesterday and already am experiencing itching scalp and increased redness on my face. I was only off for 1 week so things hadn’t cleared up much. I will email Catherine about my email. Take care and talk to you soon.
Pat – thanks for the info on the study. It gives me a guideline to ask my Onc about.
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