› Forums › General Melanoma Community › Post Yervoy – mets to lungs have grown
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mombase.
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- November 17, 2011 at 4:07 pm
Good Day fellow warriors!
It's been a long time since I've posted here since I thought I wasn't going to need to again. However, I've updated my profile with all the happenings of the past year, so if you'd like a complete update, please check that out.
Good Day fellow warriors!
It's been a long time since I've posted here since I thought I wasn't going to need to again. However, I've updated my profile with all the happenings of the past year, so if you'd like a complete update, please check that out.
Summary…I hat spots on my lungs this past April, which they scanned 3 months later and they had grown to 7mm and 12mm. Biopsy confirmed melanoma, so Dr. Chmielowski of UCLA started me on the Yervoy treatment. I was able to complete 3 of the 4 injections before I came down with severe colitis which landed me in the hospital from 8-11 Nov (got discharged Veteran's Day of all things). They started me on 100mg of Prednisone which I'm not happy about, but it's made the colitis much better for now. I've started tappering 10mg a week and I'm at 90mg now. Needless to say, I'm not finishing the Yervoy treatment.
PET/CT scan the other day showed that the spots in my lungs have grown to 9mm and 22mm, but there are no other remarkable locations of melanoma, so at least it's not spreading to anywhere else yet. The next steps we came up with are to remove the nodes via surgery and test them for the BRAF mutation. If positive, I'll go on BRAF inhibitor drug post-surgery and see how things go. I'm running this plan by my docs at MD Anderson too, just to make sure they wouldn't do anything different.
All-in-all I actually feel good, I'm eating, not quite exercising yet, but walking when I can, got good meds to help me sleep, and I'm not symptomatic from the cancer at all.
So, any comments or suggestions out there from folks on other trials that may be also promising for someone like me? Also, we're wondering if there may even be a delayed response from the Yervoy and maybe it'll go to work later. I'm not very hopeful about this since they have me on such high dose steroids and my immune system is just getting shot to pieces from that.
Also, I just want to say to everyone on here…keep fighting this hard, not only for yourself, but for those you love and who love you. It's the fight in us that makes us strong, and through our strength we will have victory. Peace.
- Replies
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- November 17, 2011 at 5:15 pm
Hi Capt. Aaron,
Thank you for your service! I have both lungs full of mets, about 12 of them, and am also on Yervoy. Just out of curiosity, were you receiving 10 mg of Yervoy in a trial, or 3 mg? I have been on the 3 mg and will have my 4th in a couple of weeks, and have basically had no side effects. My concern is the drug is not working, but I won't find out for a few months. I think testing for B-RAF is a great next step. Hopefully, you will be positive. And it looks like there are great new trial options available and more becoming available all the time. In a weird kind of way, it is a great time to have melanoma, if we have to have it!
Cristy, Stage IV
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- November 17, 2011 at 5:15 pm
Hi Capt. Aaron,
Thank you for your service! I have both lungs full of mets, about 12 of them, and am also on Yervoy. Just out of curiosity, were you receiving 10 mg of Yervoy in a trial, or 3 mg? I have been on the 3 mg and will have my 4th in a couple of weeks, and have basically had no side effects. My concern is the drug is not working, but I won't find out for a few months. I think testing for B-RAF is a great next step. Hopefully, you will be positive. And it looks like there are great new trial options available and more becoming available all the time. In a weird kind of way, it is a great time to have melanoma, if we have to have it!
Cristy, Stage IV
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- November 17, 2011 at 5:15 pm
Hi Capt. Aaron,
Thank you for your service! I have both lungs full of mets, about 12 of them, and am also on Yervoy. Just out of curiosity, were you receiving 10 mg of Yervoy in a trial, or 3 mg? I have been on the 3 mg and will have my 4th in a couple of weeks, and have basically had no side effects. My concern is the drug is not working, but I won't find out for a few months. I think testing for B-RAF is a great next step. Hopefully, you will be positive. And it looks like there are great new trial options available and more becoming available all the time. In a weird kind of way, it is a great time to have melanoma, if we have to have it!
Cristy, Stage IV
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- November 18, 2011 at 3:18 pm
WOw, if you can have surgery on the lung mets, that's great! But I am with Maria…late responses happen often with Yervoy. It's a little unnerving. I know there has been inflammation of my mets and a couple of new ones have popped up, but I'm holding out hope for that late response! And, it is definitely true that the lungs are very forgiving. They are pretty large in comparison to mets, so there don't appear to be any symptoms. When I first heard that I had lung mets, I was pretty sure that involved gasping for air!
Cristy, Stage IV
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- November 18, 2011 at 3:18 pm
WOw, if you can have surgery on the lung mets, that's great! But I am with Maria…late responses happen often with Yervoy. It's a little unnerving. I know there has been inflammation of my mets and a couple of new ones have popped up, but I'm holding out hope for that late response! And, it is definitely true that the lungs are very forgiving. They are pretty large in comparison to mets, so there don't appear to be any symptoms. When I first heard that I had lung mets, I was pretty sure that involved gasping for air!
Cristy, Stage IV
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- November 18, 2011 at 3:47 pm
Thanks Cristy, we'll see what the surgeon has to say on Monday. From what I hear he's a really typical jock surgeon and many patients have left his office sobbing from whatever he tells them. I'm not gonna back down though and I'm gonna push for this surgery hard.
The delayed response from Yervoy sounds promising but my doc said they've only seen it in about 2% of patients that don't have an initial positive response to Yervoy. I'm not a statistic and neither are you so I'll keep the faith if you will that Yervoy will still work for us.
I notice some symptoms if I go for like a 3 mile run or something and just the mental thought of them being there makes me more "aware" of maybe something going on, but ya, I haven't been coughing or wheezing or anything like that, so it's hard to appreciate there's something wrong.
Take care Cristy, and I'll keep posting on updates.
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- November 18, 2011 at 3:47 pm
Thanks Cristy, we'll see what the surgeon has to say on Monday. From what I hear he's a really typical jock surgeon and many patients have left his office sobbing from whatever he tells them. I'm not gonna back down though and I'm gonna push for this surgery hard.
The delayed response from Yervoy sounds promising but my doc said they've only seen it in about 2% of patients that don't have an initial positive response to Yervoy. I'm not a statistic and neither are you so I'll keep the faith if you will that Yervoy will still work for us.
I notice some symptoms if I go for like a 3 mile run or something and just the mental thought of them being there makes me more "aware" of maybe something going on, but ya, I haven't been coughing or wheezing or anything like that, so it's hard to appreciate there's something wrong.
Take care Cristy, and I'll keep posting on updates.
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- November 18, 2011 at 3:47 pm
Thanks Cristy, we'll see what the surgeon has to say on Monday. From what I hear he's a really typical jock surgeon and many patients have left his office sobbing from whatever he tells them. I'm not gonna back down though and I'm gonna push for this surgery hard.
The delayed response from Yervoy sounds promising but my doc said they've only seen it in about 2% of patients that don't have an initial positive response to Yervoy. I'm not a statistic and neither are you so I'll keep the faith if you will that Yervoy will still work for us.
I notice some symptoms if I go for like a 3 mile run or something and just the mental thought of them being there makes me more "aware" of maybe something going on, but ya, I haven't been coughing or wheezing or anything like that, so it's hard to appreciate there's something wrong.
Take care Cristy, and I'll keep posting on updates.
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- November 20, 2011 at 4:46 am
Very cool…I don't even like statistics, but I realize how important they are in relation to studies of medicine. I retired from the ANG in 2008, so my 3 mile running days are over!! Take care. I will definitely look forward to your updates!
Cristy, Stage IV
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- November 20, 2011 at 4:46 am
Very cool…I don't even like statistics, but I realize how important they are in relation to studies of medicine. I retired from the ANG in 2008, so my 3 mile running days are over!! Take care. I will definitely look forward to your updates!
Cristy, Stage IV
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- November 20, 2011 at 4:46 am
Very cool…I don't even like statistics, but I realize how important they are in relation to studies of medicine. I retired from the ANG in 2008, so my 3 mile running days are over!! Take care. I will definitely look forward to your updates!
Cristy, Stage IV
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- November 18, 2011 at 3:18 pm
WOw, if you can have surgery on the lung mets, that's great! But I am with Maria…late responses happen often with Yervoy. It's a little unnerving. I know there has been inflammation of my mets and a couple of new ones have popped up, but I'm holding out hope for that late response! And, it is definitely true that the lungs are very forgiving. They are pretty large in comparison to mets, so there don't appear to be any symptoms. When I first heard that I had lung mets, I was pretty sure that involved gasping for air!
Cristy, Stage IV
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- November 17, 2011 at 10:26 pm
Hey Cristy,
It's my honor to serve, and thank you. I was not on the 10mg trial for Yervoy, just got the 3mg dose. My side effects weren't bad through two treatments, but the third knocked me down and dragged me out, and it's still working me over. The colitis is really unbearable without Prednisone and that really sucks because I need my immune system to be top notch right now. But one step at a time like always, and I'll attack this colitis and then keep up the fight against the melanoma.
I asked my doc about the concept of getting side effects vs. not getting side effects and the relative effectiveness of the Yervoy in either case. He said they didn't know enough about it to make that determination right now. I have seen some posts on here from folks that have gotten the side effects bad, even had to stop after the second treatment, and the Yervoy worked…leading them and the docs to believe that their immune system ramped up so hard that it killed the melanoma and did a number on their other organs. My immune system is apparently just interested in working over my other organs, not on irradicating melanoma from my lungs. So, I'll take the knife, cut those boogers out of there, and move forward with whatever's next.
You keep up the good fight, and I hope you have a better response to the Yervoy than I did. Right now I feel like its been a lose-lose battle for me. Take care Cristy and God Bless.
–Aaron
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- November 17, 2011 at 10:26 pm
Hey Cristy,
It's my honor to serve, and thank you. I was not on the 10mg trial for Yervoy, just got the 3mg dose. My side effects weren't bad through two treatments, but the third knocked me down and dragged me out, and it's still working me over. The colitis is really unbearable without Prednisone and that really sucks because I need my immune system to be top notch right now. But one step at a time like always, and I'll attack this colitis and then keep up the fight against the melanoma.
I asked my doc about the concept of getting side effects vs. not getting side effects and the relative effectiveness of the Yervoy in either case. He said they didn't know enough about it to make that determination right now. I have seen some posts on here from folks that have gotten the side effects bad, even had to stop after the second treatment, and the Yervoy worked…leading them and the docs to believe that their immune system ramped up so hard that it killed the melanoma and did a number on their other organs. My immune system is apparently just interested in working over my other organs, not on irradicating melanoma from my lungs. So, I'll take the knife, cut those boogers out of there, and move forward with whatever's next.
You keep up the good fight, and I hope you have a better response to the Yervoy than I did. Right now I feel like its been a lose-lose battle for me. Take care Cristy and God Bless.
–Aaron
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- November 17, 2011 at 10:26 pm
Hey Cristy,
It's my honor to serve, and thank you. I was not on the 10mg trial for Yervoy, just got the 3mg dose. My side effects weren't bad through two treatments, but the third knocked me down and dragged me out, and it's still working me over. The colitis is really unbearable without Prednisone and that really sucks because I need my immune system to be top notch right now. But one step at a time like always, and I'll attack this colitis and then keep up the fight against the melanoma.
I asked my doc about the concept of getting side effects vs. not getting side effects and the relative effectiveness of the Yervoy in either case. He said they didn't know enough about it to make that determination right now. I have seen some posts on here from folks that have gotten the side effects bad, even had to stop after the second treatment, and the Yervoy worked…leading them and the docs to believe that their immune system ramped up so hard that it killed the melanoma and did a number on their other organs. My immune system is apparently just interested in working over my other organs, not on irradicating melanoma from my lungs. So, I'll take the knife, cut those boogers out of there, and move forward with whatever's next.
You keep up the good fight, and I hope you have a better response to the Yervoy than I did. Right now I feel like its been a lose-lose battle for me. Take care Cristy and God Bless.
–Aaron
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- November 18, 2011 at 6:00 am
Perhaps consider Anti PD 1 :o) Lynn Stage 4 NED
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- November 18, 2011 at 11:54 am
Don't give up on the Yervoy just yet – late reponses have happened, and the tumors tend to get larger before shrinking. I know that the colitis is a side effect, but I thought others had mentioned a different type of steroid to treat it other than prednisone.
If it is determined you are definitely NOT a responder, I would look into the trials at NIH or the anti-pd1 like Lynn mentioned. Of course, if they are resectable, that would be your best option. Then you could look into a clinical trial for resected stage IV disease.
Wishing you peace in your journey, and stay strong.
Maria
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- November 18, 2011 at 11:54 am
Don't give up on the Yervoy just yet – late reponses have happened, and the tumors tend to get larger before shrinking. I know that the colitis is a side effect, but I thought others had mentioned a different type of steroid to treat it other than prednisone.
If it is determined you are definitely NOT a responder, I would look into the trials at NIH or the anti-pd1 like Lynn mentioned. Of course, if they are resectable, that would be your best option. Then you could look into a clinical trial for resected stage IV disease.
Wishing you peace in your journey, and stay strong.
Maria
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- November 18, 2011 at 3:39 pm
Hey Maria,
Thanks for the reply and yes I was on a different steroid after my second dose of Yervoy and it was called Entocort. Entocort is good because it just coats the bowels as opposed to performing systemic response like Prednisone. Unfortunately the colitis set in hard and fast after my third Yervoy treatment and we had to step up to the Prednisone. Then the dose of Prednisone turned out to not even be enough and I was hospitalized for 4 days while they trippled the dose of Pred. That worked, and I'm working to taper off now, but its hard not to do it quickly because I know getting off these things will open doors for anti PD-1 trials.
Surgery consultation next Monday to deterimine what they can do for me there. But I'm hopefuly they can cut it out and then we move on to injecting myself in an anti PD-1 trial. Hopefully the bout of colitis won't discount me from elligibility as well.
I'm still hopeful that the Yervoy will work despite the mets growing, but with a continued suppressed immune system from the Pred, I'm sure that discounts delayed Yervoy response probabilities. I'm not a doctor though I'm an engineer, so hopefully we'll figure something out that I'm not thinking of.
Thanks again for your response and kind words. Peace and blessings to you in your fight as well.
–Aaron
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- November 18, 2011 at 3:39 pm
Hey Maria,
Thanks for the reply and yes I was on a different steroid after my second dose of Yervoy and it was called Entocort. Entocort is good because it just coats the bowels as opposed to performing systemic response like Prednisone. Unfortunately the colitis set in hard and fast after my third Yervoy treatment and we had to step up to the Prednisone. Then the dose of Prednisone turned out to not even be enough and I was hospitalized for 4 days while they trippled the dose of Pred. That worked, and I'm working to taper off now, but its hard not to do it quickly because I know getting off these things will open doors for anti PD-1 trials.
Surgery consultation next Monday to deterimine what they can do for me there. But I'm hopefuly they can cut it out and then we move on to injecting myself in an anti PD-1 trial. Hopefully the bout of colitis won't discount me from elligibility as well.
I'm still hopeful that the Yervoy will work despite the mets growing, but with a continued suppressed immune system from the Pred, I'm sure that discounts delayed Yervoy response probabilities. I'm not a doctor though I'm an engineer, so hopefully we'll figure something out that I'm not thinking of.
Thanks again for your response and kind words. Peace and blessings to you in your fight as well.
–Aaron
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- November 18, 2011 at 3:39 pm
Hey Maria,
Thanks for the reply and yes I was on a different steroid after my second dose of Yervoy and it was called Entocort. Entocort is good because it just coats the bowels as opposed to performing systemic response like Prednisone. Unfortunately the colitis set in hard and fast after my third Yervoy treatment and we had to step up to the Prednisone. Then the dose of Prednisone turned out to not even be enough and I was hospitalized for 4 days while they trippled the dose of Pred. That worked, and I'm working to taper off now, but its hard not to do it quickly because I know getting off these things will open doors for anti PD-1 trials.
Surgery consultation next Monday to deterimine what they can do for me there. But I'm hopefuly they can cut it out and then we move on to injecting myself in an anti PD-1 trial. Hopefully the bout of colitis won't discount me from elligibility as well.
I'm still hopeful that the Yervoy will work despite the mets growing, but with a continued suppressed immune system from the Pred, I'm sure that discounts delayed Yervoy response probabilities. I'm not a doctor though I'm an engineer, so hopefully we'll figure something out that I'm not thinking of.
Thanks again for your response and kind words. Peace and blessings to you in your fight as well.
–Aaron
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- November 20, 2011 at 2:58 am
Christy,I had 15 nodules in my lungs and completed yervoy with virtually no side effects. My 12 week scan showed 50 percent regression and some were gone. 2 had grown a tiny bit, but we’re unsure if it’s inflammation or growth. Another scan on nov 30th will give me more news.
There is someone on this board whose husband wasn’t responding to ipi. There were more tumours and couple were bigger. About 6 weeks later, they were shrinking, so ipi started working. My dr. Even told me that I was the fatest patient to regress so quickly so everybody is different. New or bigger mets is often quite common on early ct.’s Aaron, there is still hope that the mets in your lungs may be smaller on your next ct, but if you can get them removed, that sounds great. Absolute lymphocyte count is a pretty good indication of how you’re responding. If it’s been rising during your ipi shots, that is often good news.
If any Dr thinks someone isn’t responding after 12weeks, I think they’re assuming way too early. Don’t ever give up believing
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- November 20, 2011 at 2:58 am
Christy,I had 15 nodules in my lungs and completed yervoy with virtually no side effects. My 12 week scan showed 50 percent regression and some were gone. 2 had grown a tiny bit, but we’re unsure if it’s inflammation or growth. Another scan on nov 30th will give me more news.
There is someone on this board whose husband wasn’t responding to ipi. There were more tumours and couple were bigger. About 6 weeks later, they were shrinking, so ipi started working. My dr. Even told me that I was the fatest patient to regress so quickly so everybody is different. New or bigger mets is often quite common on early ct.’s Aaron, there is still hope that the mets in your lungs may be smaller on your next ct, but if you can get them removed, that sounds great. Absolute lymphocyte count is a pretty good indication of how you’re responding. If it’s been rising during your ipi shots, that is often good news.
If any Dr thinks someone isn’t responding after 12weeks, I think they’re assuming way too early. Don’t ever give up believing
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- November 20, 2011 at 2:58 am
Christy,I had 15 nodules in my lungs and completed yervoy with virtually no side effects. My 12 week scan showed 50 percent regression and some were gone. 2 had grown a tiny bit, but we’re unsure if it’s inflammation or growth. Another scan on nov 30th will give me more news.
There is someone on this board whose husband wasn’t responding to ipi. There were more tumours and couple were bigger. About 6 weeks later, they were shrinking, so ipi started working. My dr. Even told me that I was the fatest patient to regress so quickly so everybody is different. New or bigger mets is often quite common on early ct.’s Aaron, there is still hope that the mets in your lungs may be smaller on your next ct, but if you can get them removed, that sounds great. Absolute lymphocyte count is a pretty good indication of how you’re responding. If it’s been rising during your ipi shots, that is often good news.
If any Dr thinks someone isn’t responding after 12weeks, I think they’re assuming way too early. Don’t ever give up believing
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- November 20, 2011 at 4:54 am
Hi, Lisa! I am looking at my blood tests and can't figure out what the abbreviation is for the absolute lymphocites count. In the beginning of my treatment, I asked my onc about the relation of the count to positive outcomes. He said not to even look at the counts until well after the last infusion, but I can't help to believe there is some connection.
Cristy
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- November 20, 2011 at 1:14 pm
Hi Christy,
The lymphocytes start to drop after the 12th week which is completely normal. Is there something on your blood count called lymphocytes? At each blood work, my lymphocytes kept going up high and then started coming down a bit after 12 weeks.
Jimmy B posted something regarding all of this. I think it was from Sloan Kettering or some other fabulous hospital.
I wish the best news on your CT scans. Aaron – hang in there, you just never know.
Lisa
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- November 20, 2011 at 3:44 pm
Thanks Lisa, I'm gonna go back to my CBC results and try to decipher the Absoulete lymphocyte counts as well and ask my doc about the levels relative ot Yervoy performance.
Surgery consultation tomorrow (Monday, 21 Nov) so we'll see what the surgeon says about cutting these boogers out. I'm also going to look more into the trial that Lynn is in at Moffitt.
Thanks everyone for the replies, keep them coming as y'all know communication is key with figuring anything out with this. Blessings!–Aaron
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- November 20, 2011 at 3:44 pm
Thanks Lisa, I'm gonna go back to my CBC results and try to decipher the Absoulete lymphocyte counts as well and ask my doc about the levels relative ot Yervoy performance.
Surgery consultation tomorrow (Monday, 21 Nov) so we'll see what the surgeon says about cutting these boogers out. I'm also going to look more into the trial that Lynn is in at Moffitt.
Thanks everyone for the replies, keep them coming as y'all know communication is key with figuring anything out with this. Blessings!–Aaron
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- November 20, 2011 at 3:44 pm
Thanks Lisa, I'm gonna go back to my CBC results and try to decipher the Absoulete lymphocyte counts as well and ask my doc about the levels relative ot Yervoy performance.
Surgery consultation tomorrow (Monday, 21 Nov) so we'll see what the surgeon says about cutting these boogers out. I'm also going to look more into the trial that Lynn is in at Moffitt.
Thanks everyone for the replies, keep them coming as y'all know communication is key with figuring anything out with this. Blessings!–Aaron
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- November 20, 2011 at 10:16 pm
Well, after scouring my lab results, the lymphocyte count is not being taken. Now I have a recollection that my onc said he was more concerend with liver function during the infusions and would focus on the lymphocites after the last infusion since the change of lymphocites would not change the course of the Yervoy treatment. I have seen a lot of differing opinions on this one…guess I will not drive myself crazy(er)!!
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- November 20, 2011 at 10:16 pm
Well, after scouring my lab results, the lymphocyte count is not being taken. Now I have a recollection that my onc said he was more concerend with liver function during the infusions and would focus on the lymphocites after the last infusion since the change of lymphocites would not change the course of the Yervoy treatment. I have seen a lot of differing opinions on this one…guess I will not drive myself crazy(er)!!
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- November 20, 2011 at 10:16 pm
Well, after scouring my lab results, the lymphocyte count is not being taken. Now I have a recollection that my onc said he was more concerend with liver function during the infusions and would focus on the lymphocites after the last infusion since the change of lymphocites would not change the course of the Yervoy treatment. I have seen a lot of differing opinions on this one…guess I will not drive myself crazy(er)!!
-
- November 20, 2011 at 1:14 pm
Hi Christy,
The lymphocytes start to drop after the 12th week which is completely normal. Is there something on your blood count called lymphocytes? At each blood work, my lymphocytes kept going up high and then started coming down a bit after 12 weeks.
Jimmy B posted something regarding all of this. I think it was from Sloan Kettering or some other fabulous hospital.
I wish the best news on your CT scans. Aaron – hang in there, you just never know.
Lisa
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- November 20, 2011 at 1:14 pm
Hi Christy,
The lymphocytes start to drop after the 12th week which is completely normal. Is there something on your blood count called lymphocytes? At each blood work, my lymphocytes kept going up high and then started coming down a bit after 12 weeks.
Jimmy B posted something regarding all of this. I think it was from Sloan Kettering or some other fabulous hospital.
I wish the best news on your CT scans. Aaron – hang in there, you just never know.
Lisa
-
- November 20, 2011 at 4:54 am
Hi, Lisa! I am looking at my blood tests and can't figure out what the abbreviation is for the absolute lymphocites count. In the beginning of my treatment, I asked my onc about the relation of the count to positive outcomes. He said not to even look at the counts until well after the last infusion, but I can't help to believe there is some connection.
Cristy
-
- November 20, 2011 at 4:54 am
Hi, Lisa! I am looking at my blood tests and can't figure out what the abbreviation is for the absolute lymphocites count. In the beginning of my treatment, I asked my onc about the relation of the count to positive outcomes. He said not to even look at the counts until well after the last infusion, but I can't help to believe there is some connection.
Cristy
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- November 18, 2011 at 11:54 am
Don't give up on the Yervoy just yet – late reponses have happened, and the tumors tend to get larger before shrinking. I know that the colitis is a side effect, but I thought others had mentioned a different type of steroid to treat it other than prednisone.
If it is determined you are definitely NOT a responder, I would look into the trials at NIH or the anti-pd1 like Lynn mentioned. Of course, if they are resectable, that would be your best option. Then you could look into a clinical trial for resected stage IV disease.
Wishing you peace in your journey, and stay strong.
Maria
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