› Forums › General Melanoma Community › Yervoy and sun sensitivity/rash??
- This topic has 22 replies, 4 voices, and was last updated 13 years, 3 months ago by
JerNYC.
- Post
-
- September 8, 2011 at 11:38 am
Hi everyone.
Tuesday was my first dose of Yervoy. Prior to Yervoy, I was on the MDX-1106 trial. While on that trial, I experience sun senstivity and if I didn't cover up real well when going out in the sun, I would break out in a rash. I usually got it on my chest and sometimes on my neck. It usually would go away within a day.
Hi everyone.
Tuesday was my first dose of Yervoy. Prior to Yervoy, I was on the MDX-1106 trial. While on that trial, I experience sun senstivity and if I didn't cover up real well when going out in the sun, I would break out in a rash. I usually got it on my chest and sometimes on my neck. It usually would go away within a day.
So, Tuesday was my first dose of Yervoy. Yesterday I went on a couple of walks outside. One was 20 min the other was 30. I wore a hat and a long sleeve shirt, but I didn't button the top button of my shirt like I normally do to try and cover the skin on my chest. About an hour after my second walk, I developed quite the rash on my chest. Very red and bumpy. Then as the night continued, it showed up on my neck, behind both of my ears and on the top part of my chest. This morning I woke up and I have tiny little bumps on the skin around my mouth. My chest is less red, but the bumps are itchy today.
Now I'm trying to figure out what caused this. My last dose of the MDX-1106 was six weeks ago. Maybe some of that is still floating around in my system and caused this sun reaction? Or, maybe it's from the Yervoy? Or, maybe it's a combination of reactions from both drugs? The rash on the chest is not something new for me, but I've never had it show up behind my ears or on my face.
I know that a rash with Yervoy is quite common, but could it really show up the day after the first dose??
What do you guys think?
~Angela
- Replies
-
-
- September 8, 2011 at 8:16 pm
Hi Angela,
Photosensitivity is not on the lis of possible side-effects, to my knowledge.
I got my rash right around my second dose.
You wear sunscreen all the time, right?
good luck w/the Ipi,
karen
-
- September 8, 2011 at 8:31 pm
Hi Karen.
Thanks for the reply! I have sunscreen in my makeup that I wear, but I try to avoid sunscreen in other places because I don't like putting the chemicals on my skin. That's why I always wear a hat and a long sleeved shirt and generally just stay out of the sun during peak times. This time I just got lazy and didn't button the top button and my chest must have gotten too much sun exposure. Guess I learned my lesson. But, I have the rash in places that were covered even. So, I'm not quite sure what to make of it.
My plan is to stay indoors for the next few days and see what happens. If the rash goes away, it was probably from the sun. If it sticks around, then perhaps it is from Yervoy already.
What did your rash look like? Mine is red and bumpy and some of the bumps kind of look like tiny zits. It itches a fair amount as well.
Thanks!
~Angela
-
- September 8, 2011 at 8:31 pm
Hi Karen.
Thanks for the reply! I have sunscreen in my makeup that I wear, but I try to avoid sunscreen in other places because I don't like putting the chemicals on my skin. That's why I always wear a hat and a long sleeved shirt and generally just stay out of the sun during peak times. This time I just got lazy and didn't button the top button and my chest must have gotten too much sun exposure. Guess I learned my lesson. But, I have the rash in places that were covered even. So, I'm not quite sure what to make of it.
My plan is to stay indoors for the next few days and see what happens. If the rash goes away, it was probably from the sun. If it sticks around, then perhaps it is from Yervoy already.
What did your rash look like? Mine is red and bumpy and some of the bumps kind of look like tiny zits. It itches a fair amount as well.
Thanks!
~Angela
-
- September 9, 2011 at 12:35 am
Angela,
Do you mind me asking an unrelated question? I'm curious how the transition from MDX-1106 to Ipi was handled. I am currently on MDX-1106 and will hopefully learn in the next month if I am responding. However on a recent MDX webinar the oncologist said that MDX stays in the system for some time (think he said 3-4 months) and that the transition needs to be handled carefully as not a lot of data on combined toxicity (although they will be getting more data as a result of the current MDX-1106/Ipi trials at MSK and Yale). Anyway, I just wondered what dose level of MDX you were on and whether you had to take a break before moving to Ipi?
Best of luck with the Ipi!
Jeremy
-
- September 9, 2011 at 2:10 am
Hi Jeremy.
There wasn't any concern about starting me on Ipi after the MDX-1106. Actually, thetrial doctor feels that I will see really good results going from that to Ipi. He thinks that there will be a nice layering effect of both of the immunotherapies.
That's interesting to hear that you heard it stays in your system for 3-4 months. I asked how long it would be in my system and I tink they told me 4-6 weeks. But, I'd actually like to think that it is still in my system. My last dose of the MDX-1106 was 6 weeks ago.
What dose are you on? They said that it was working for me, it just wasn't enough to keep me on the trial. My growth rate slowed down, but was still above the 20% allowed.
~Angela
-
- September 9, 2011 at 2:10 am
Hi Jeremy.
There wasn't any concern about starting me on Ipi after the MDX-1106. Actually, thetrial doctor feels that I will see really good results going from that to Ipi. He thinks that there will be a nice layering effect of both of the immunotherapies.
That's interesting to hear that you heard it stays in your system for 3-4 months. I asked how long it would be in my system and I tink they told me 4-6 weeks. But, I'd actually like to think that it is still in my system. My last dose of the MDX-1106 was 6 weeks ago.
What dose are you on? They said that it was working for me, it just wasn't enough to keep me on the trial. My growth rate slowed down, but was still above the 20% allowed.
~Angela
-
- September 9, 2011 at 10:38 am
One of the Oncos I spoke to also thought the combined effect could be very promising. I guess the caution simply stemmed from the somewhat uncharted waters. That said there is a decent cohort of patients at MSK (and I think Yale as well) currently getting both drugs in a combined clinical trial, so there must be growing evidence of manageability.
I am on 1mg/kg. Unlike some people who have posted I have had some side effects, but still very very tolerable all things considered.
-
- September 9, 2011 at 11:34 am
I tried to get into the combination trial before I started the MDX-1106 alone, but they weren't recruitng new patients at the time. I was on the .3mg/kg. You're lucky that you got the higher dosage! I wonder if it would have been more effective for me if I would have gotten that dosage.
Sun sensitivity was my biggest side effect. I had some effects on my bowel movements, but nothing that ever required medication. I also had some fatigue. We had to drive four hours away for the treatments and without fail, I would always fall asleep on the way home. I would just get hit with a wave of tired and not be able to keep my eyes open. I think I had some overall fatigue as well, but I didn't really notice that until about 5-6 weeks after the last dose when I all of a sudden seemed more energetic.
I'm really thinking that the skin rash I am having now has to be a result of having both drugs in my system. I never responded like this to the sun when I was on MDX-1106. Yes, I had sun sensitivity, but the rash never went to as many places as I have it right now and it never lasted this long. I'm going to call my doctor today to report the rash. I don't know that it's necessary to do that since rash is a common side effect. I just certainly didn't expect to see it this early and since it could be a result of both drugs in my system, better safe than sorry!
How long have you been on the trial? Have you had your first set of scans yet? The doctor in Ohio had lots of people on the trial and lots of people having good responses. I think I was actually only the second patient out of all the ones they had that had to stop the trial because of progression.
~Angela
-
- September 9, 2011 at 2:27 pm
Was there the option to escalate the MDX dose to 1mg/kg when you hit the point that the response to the .3mg/kg was deemed insufficient? I thought I was told that people on the lower dose could escalate if they didn't respond (I guess technically that meant leaving the trial, but that BMS would still supply the drug)? Maybe I misunderstood.
I hear you on the tiredness. The past few weeks have involved a lot of early nights and frequent nodding off during the day!
I had the first scans a few weeks back. It looked like things were stable, but it was complicated by the fact that the wromg set of prior images had been uploaded so they had to do a PET to CT translation. Next scans end of Sep.
Dr Sznol (Yale) who led the recent MDX webinar (its posted on the MIF website) seemed very excited about the synergistic benefits of residual MDX when patients have to go on to subsequent treatments, so hopefully your rash is indicative of that type of positive response!
J
-
- September 9, 2011 at 2:27 pm
Was there the option to escalate the MDX dose to 1mg/kg when you hit the point that the response to the .3mg/kg was deemed insufficient? I thought I was told that people on the lower dose could escalate if they didn't respond (I guess technically that meant leaving the trial, but that BMS would still supply the drug)? Maybe I misunderstood.
I hear you on the tiredness. The past few weeks have involved a lot of early nights and frequent nodding off during the day!
I had the first scans a few weeks back. It looked like things were stable, but it was complicated by the fact that the wromg set of prior images had been uploaded so they had to do a PET to CT translation. Next scans end of Sep.
Dr Sznol (Yale) who led the recent MDX webinar (its posted on the MIF website) seemed very excited about the synergistic benefits of residual MDX when patients have to go on to subsequent treatments, so hopefully your rash is indicative of that type of positive response!
J
-
- September 9, 2011 at 11:34 am
I tried to get into the combination trial before I started the MDX-1106 alone, but they weren't recruitng new patients at the time. I was on the .3mg/kg. You're lucky that you got the higher dosage! I wonder if it would have been more effective for me if I would have gotten that dosage.
Sun sensitivity was my biggest side effect. I had some effects on my bowel movements, but nothing that ever required medication. I also had some fatigue. We had to drive four hours away for the treatments and without fail, I would always fall asleep on the way home. I would just get hit with a wave of tired and not be able to keep my eyes open. I think I had some overall fatigue as well, but I didn't really notice that until about 5-6 weeks after the last dose when I all of a sudden seemed more energetic.
I'm really thinking that the skin rash I am having now has to be a result of having both drugs in my system. I never responded like this to the sun when I was on MDX-1106. Yes, I had sun sensitivity, but the rash never went to as many places as I have it right now and it never lasted this long. I'm going to call my doctor today to report the rash. I don't know that it's necessary to do that since rash is a common side effect. I just certainly didn't expect to see it this early and since it could be a result of both drugs in my system, better safe than sorry!
How long have you been on the trial? Have you had your first set of scans yet? The doctor in Ohio had lots of people on the trial and lots of people having good responses. I think I was actually only the second patient out of all the ones they had that had to stop the trial because of progression.
~Angela
-
- September 9, 2011 at 10:38 am
One of the Oncos I spoke to also thought the combined effect could be very promising. I guess the caution simply stemmed from the somewhat uncharted waters. That said there is a decent cohort of patients at MSK (and I think Yale as well) currently getting both drugs in a combined clinical trial, so there must be growing evidence of manageability.
I am on 1mg/kg. Unlike some people who have posted I have had some side effects, but still very very tolerable all things considered.
-
- September 17, 2011 at 8:57 pm
Further to this point, I was at the "Perspectives in Melanoma" conference in NY the past few days and spoke to two doctors with substantial experience with both Ipi and MDX-1106. They both said that they believe MDX stays in the body for many months – even up to a year – so that transitioning straight onto Ipi from MDX can be thought of as being on a version of the combination trial. So here's hoping you reap the synergistic benefits! Best wishes. J
-
- September 18, 2011 at 2:12 am
I am at MSKCC. I don't believe it is open right now, but it is worth asking. I am only 12 weeks in.
I talked to someone from BMS last week who said they would be recruiting more patients soon. I will ask at MSKCC what they know and post back, but obviously you might want to call them as well.
-
- September 18, 2011 at 2:12 am
I am at MSKCC. I don't believe it is open right now, but it is worth asking. I am only 12 weeks in.
I talked to someone from BMS last week who said they would be recruiting more patients soon. I will ask at MSKCC what they know and post back, but obviously you might want to call them as well.
-
- September 17, 2011 at 8:57 pm
Further to this point, I was at the "Perspectives in Melanoma" conference in NY the past few days and spoke to two doctors with substantial experience with both Ipi and MDX-1106. They both said that they believe MDX stays in the body for many months – even up to a year – so that transitioning straight onto Ipi from MDX can be thought of as being on a version of the combination trial. So here's hoping you reap the synergistic benefits! Best wishes. J
-
- September 9, 2011 at 12:35 am
Angela,
Do you mind me asking an unrelated question? I'm curious how the transition from MDX-1106 to Ipi was handled. I am currently on MDX-1106 and will hopefully learn in the next month if I am responding. However on a recent MDX webinar the oncologist said that MDX stays in the system for some time (think he said 3-4 months) and that the transition needs to be handled carefully as not a lot of data on combined toxicity (although they will be getting more data as a result of the current MDX-1106/Ipi trials at MSK and Yale). Anyway, I just wondered what dose level of MDX you were on and whether you had to take a break before moving to Ipi?
Best of luck with the Ipi!
Jeremy
-
- You must be logged in to reply to this topic.