› Forums › General Melanoma Community › how fast does it work?
- This topic has 27 replies, 6 voices, and was last updated 9 years, 10 months ago by
melfighter.
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- June 14, 2014 at 9:14 pm
Hello there,
I just started the Merk PD-1 EAP this week (first dose this past Wednesday). I'm hoping to hear from some of the others out there that have done PD-1 either as a trial or as part of the EAP's. Specifically from those who recieved the lower doses (similar to what is being given in the EAPs). I'd like to know, for those of you who got a positive response, how quickly did you notice positive changes? I've got some tumors that were growing rather quickly after having discontinued the BRAF/MEK combo in preparation for PD-1. They've become quite uncomfortable and I have to take pain killers at regular intervals. My concern is that if I don't get a relatively quick response these and other tumors will be a serious problem as there's one next to my aorta, one in a vertebrae, another one that's perispinal, etc. By "response" I'd certainly take a slowing or stabilization, I'm just wondering how early people noticed anything once they started.
Thanks everyone
-Eva
- Replies
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- June 14, 2014 at 10:06 pm
Eva, so glad to hear that you were able to get started on PD-1! Wishing you success.
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- June 15, 2014 at 1:58 am
My husband is on the MK3475 EAP and will have his 4th infusion Tuesday. The labs done at the second infusion already showed a reduction in his LDH numbers. He doesn't have any tumors that can be felt so we won't know for sure until his scans in July what is really happening. He feels good though and Dr. O'Day is very optimistic. He told us responses can sometimes occur very early on with this treatment.
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- June 15, 2014 at 12:45 pm
Thank you for responding. I'm glad to hear your husband is feeling well. I've never had an elevated LDH, despite a very high tumor burden so unfortunately I can't use that as any kind of indicator, but I do have several subcutaneous masses and large lymph nodes that are pretty easily felt, so that's often what I use as an indicator. On one hand it's nice to be able to just feel and see, but I have a tendancy to check them far too often so I tend to miss small changes (either increases or decreases). It's also easy to get focused more on them rather than just beign able to forget about things until scan time. Pluses and minuses, I guess. I have plenty of internal mets as well and a couple of them are giving me some grief right now having stopped the combo (largely because some of them were starting to grow again anyway, but I think they've really picked up the pace since I stopped) which is why I was asking how soon people noticed a difference. I know it's only individual stories, but it helps me to know that people do respond and sometimes within a shorter amount of time.
Best of luck to you and your husband
-Eva
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- June 15, 2014 at 12:45 pm
Thank you for responding. I'm glad to hear your husband is feeling well. I've never had an elevated LDH, despite a very high tumor burden so unfortunately I can't use that as any kind of indicator, but I do have several subcutaneous masses and large lymph nodes that are pretty easily felt, so that's often what I use as an indicator. On one hand it's nice to be able to just feel and see, but I have a tendancy to check them far too often so I tend to miss small changes (either increases or decreases). It's also easy to get focused more on them rather than just beign able to forget about things until scan time. Pluses and minuses, I guess. I have plenty of internal mets as well and a couple of them are giving me some grief right now having stopped the combo (largely because some of them were starting to grow again anyway, but I think they've really picked up the pace since I stopped) which is why I was asking how soon people noticed a difference. I know it's only individual stories, but it helps me to know that people do respond and sometimes within a shorter amount of time.
Best of luck to you and your husband
-Eva
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- June 15, 2014 at 12:45 pm
Thank you for responding. I'm glad to hear your husband is feeling well. I've never had an elevated LDH, despite a very high tumor burden so unfortunately I can't use that as any kind of indicator, but I do have several subcutaneous masses and large lymph nodes that are pretty easily felt, so that's often what I use as an indicator. On one hand it's nice to be able to just feel and see, but I have a tendancy to check them far too often so I tend to miss small changes (either increases or decreases). It's also easy to get focused more on them rather than just beign able to forget about things until scan time. Pluses and minuses, I guess. I have plenty of internal mets as well and a couple of them are giving me some grief right now having stopped the combo (largely because some of them were starting to grow again anyway, but I think they've really picked up the pace since I stopped) which is why I was asking how soon people noticed a difference. I know it's only individual stories, but it helps me to know that people do respond and sometimes within a shorter amount of time.
Best of luck to you and your husband
-Eva
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- June 15, 2014 at 1:58 am
My husband is on the MK3475 EAP and will have his 4th infusion Tuesday. The labs done at the second infusion already showed a reduction in his LDH numbers. He doesn't have any tumors that can be felt so we won't know for sure until his scans in July what is really happening. He feels good though and Dr. O'Day is very optimistic. He told us responses can sometimes occur very early on with this treatment.
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- June 15, 2014 at 1:58 am
My husband is on the MK3475 EAP and will have his 4th infusion Tuesday. The labs done at the second infusion already showed a reduction in his LDH numbers. He doesn't have any tumors that can be felt so we won't know for sure until his scans in July what is really happening. He feels good though and Dr. O'Day is very optimistic. He told us responses can sometimes occur very early on with this treatment.
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- June 15, 2014 at 12:33 pm
Thank you, I'm quite glad about it myself. Now I'm just hoping it works. I'm still nervous after failing Ipi last summer that the same thing will happen this time and then I won't have time or qualify for ACT/TIL or any other trial.
I hope you are still doing well with your journey
-Eva
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- June 15, 2014 at 12:33 pm
Thank you, I'm quite glad about it myself. Now I'm just hoping it works. I'm still nervous after failing Ipi last summer that the same thing will happen this time and then I won't have time or qualify for ACT/TIL or any other trial.
I hope you are still doing well with your journey
-Eva
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- June 15, 2014 at 12:33 pm
Thank you, I'm quite glad about it myself. Now I'm just hoping it works. I'm still nervous after failing Ipi last summer that the same thing will happen this time and then I won't have time or qualify for ACT/TIL or any other trial.
I hope you are still doing well with your journey
-Eva
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- June 15, 2014 at 6:05 am
Eva, I wish you a quick response. I had a similar question going into my anti-PD1trial (Mine is BMS however but similar). I also came off BRAF drug and waited through the washout period and could see my tumors growing fast. I started on the trial April 1 of this year and I had A LOT tumors so I was quite sick, no appetite, could hardly move. However after about 3-4 weeks I was able to see a good improvement. My tumors were shrinking and my overall energy was improving. I also noticed many of my tumors (the ones that I could see at least) started getting inflamed and then shrank.
Good luck,
Shane
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- June 15, 2014 at 12:55 pm
Thank you for your response- it's very encouraging. That's the way I was last fall after failing Ipi (Yervoy), trying (and being denied) to get into a PD-1 trial and having to go onto the combo. I really don't want to get to that point again, which is why I posted the question. I've had inflammation in tumors that are both coming an going, so it's very hard for me to discern any meaning from inflamation (and in some cases bruising). One of the ones that has been growing the fastest has been very inflamed and painful, and I have had that happen prior to shrinkage in the past (after IL-2 and a couple while on Ipi). I'd love to think it was a good sign, but I'm not holding my breath because the inflammation started a couple days before my first dose. I'm still hoping that my immune system was trying to get a head start, but we'll have to see. If it doesn't at least settle down a little in the next week or so I may ask about having it removed for comfort reasons (it's in my armpit, so it's constantly rubbing and being pressured between my arm an chest, especially at night when I'm trying to sleep). I have lots of other tumors to monitor and measure, so I don't think I would hit too much objection. I'll give my body and the drugs a chance first though. If the inflammation would setle down, that would be a huge help, even if the tumor just stabilizes or slows down it's growth but doesn't shrink yet. Hopefully I have as rapid a response as you did.
I hope you continue to have an excellent response and get to that ultimate goal of NED and long term success,
-Eva
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- June 15, 2014 at 12:55 pm
Thank you for your response- it's very encouraging. That's the way I was last fall after failing Ipi (Yervoy), trying (and being denied) to get into a PD-1 trial and having to go onto the combo. I really don't want to get to that point again, which is why I posted the question. I've had inflammation in tumors that are both coming an going, so it's very hard for me to discern any meaning from inflamation (and in some cases bruising). One of the ones that has been growing the fastest has been very inflamed and painful, and I have had that happen prior to shrinkage in the past (after IL-2 and a couple while on Ipi). I'd love to think it was a good sign, but I'm not holding my breath because the inflammation started a couple days before my first dose. I'm still hoping that my immune system was trying to get a head start, but we'll have to see. If it doesn't at least settle down a little in the next week or so I may ask about having it removed for comfort reasons (it's in my armpit, so it's constantly rubbing and being pressured between my arm an chest, especially at night when I'm trying to sleep). I have lots of other tumors to monitor and measure, so I don't think I would hit too much objection. I'll give my body and the drugs a chance first though. If the inflammation would setle down, that would be a huge help, even if the tumor just stabilizes or slows down it's growth but doesn't shrink yet. Hopefully I have as rapid a response as you did.
I hope you continue to have an excellent response and get to that ultimate goal of NED and long term success,
-Eva
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- June 15, 2014 at 12:55 pm
Thank you for your response- it's very encouraging. That's the way I was last fall after failing Ipi (Yervoy), trying (and being denied) to get into a PD-1 trial and having to go onto the combo. I really don't want to get to that point again, which is why I posted the question. I've had inflammation in tumors that are both coming an going, so it's very hard for me to discern any meaning from inflamation (and in some cases bruising). One of the ones that has been growing the fastest has been very inflamed and painful, and I have had that happen prior to shrinkage in the past (after IL-2 and a couple while on Ipi). I'd love to think it was a good sign, but I'm not holding my breath because the inflammation started a couple days before my first dose. I'm still hoping that my immune system was trying to get a head start, but we'll have to see. If it doesn't at least settle down a little in the next week or so I may ask about having it removed for comfort reasons (it's in my armpit, so it's constantly rubbing and being pressured between my arm an chest, especially at night when I'm trying to sleep). I have lots of other tumors to monitor and measure, so I don't think I would hit too much objection. I'll give my body and the drugs a chance first though. If the inflammation would setle down, that would be a huge help, even if the tumor just stabilizes or slows down it's growth but doesn't shrink yet. Hopefully I have as rapid a response as you did.
I hope you continue to have an excellent response and get to that ultimate goal of NED and long term success,
-Eva
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- June 15, 2014 at 6:05 am
Eva, I wish you a quick response. I had a similar question going into my anti-PD1trial (Mine is BMS however but similar). I also came off BRAF drug and waited through the washout period and could see my tumors growing fast. I started on the trial April 1 of this year and I had A LOT tumors so I was quite sick, no appetite, could hardly move. However after about 3-4 weeks I was able to see a good improvement. My tumors were shrinking and my overall energy was improving. I also noticed many of my tumors (the ones that I could see at least) started getting inflamed and then shrank.
Good luck,
Shane
-
- June 15, 2014 at 6:05 am
Eva, I wish you a quick response. I had a similar question going into my anti-PD1trial (Mine is BMS however but similar). I also came off BRAF drug and waited through the washout period and could see my tumors growing fast. I started on the trial April 1 of this year and I had A LOT tumors so I was quite sick, no appetite, could hardly move. However after about 3-4 weeks I was able to see a good improvement. My tumors were shrinking and my overall energy was improving. I also noticed many of my tumors (the ones that I could see at least) started getting inflamed and then shrank.
Good luck,
Shane
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- June 15, 2014 at 3:42 pm
Hey Eva I'm right there with you. I finally decided to only check my 3 visible tumors first thing in the morning then try to forget about it as if we really can but I force myself. I had my 2nd dose of Merck's EAP pd1 last Wednesday. I take it as a good sign the 3 visible tumors don't seem to be any bigger. Of course we never know until the scan what is going on underneath. I certainly have lots of internal only ones too.
About half a day from being off the combo pills I started getting pains again especially with my skull. Fortunately it was only about a week washout. From being on pd1 about day 3 to about day 13 I was having lots of pressure with my skull. One of the visible tumors is about half the size of an egg there. Just touching my skull in certain spots would cause massive pain. Then suddenly on about day 14 all that eased off a lot. I didn't mention to anyone but I also briefly felt like a cool soothing liquid between my skin and skull bone about 4 times during all that time.
Now I'm doing as ok as I can be. Not great but I've been worse. The doctor said it will take 5 or 6 doses before he knows if it is working.
Also during that pain the pain pills would wear off too soon for me. Granted I only did tylenol instead of their precription stuff they've prescribed in the past. So instead I numb the pain spots with a heating pad or ice pack. Seemed to give me some releaf but dunno if that works for everyone.
Good luck.
Artie
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- June 15, 2014 at 3:42 pm
Hey Eva I'm right there with you. I finally decided to only check my 3 visible tumors first thing in the morning then try to forget about it as if we really can but I force myself. I had my 2nd dose of Merck's EAP pd1 last Wednesday. I take it as a good sign the 3 visible tumors don't seem to be any bigger. Of course we never know until the scan what is going on underneath. I certainly have lots of internal only ones too.
About half a day from being off the combo pills I started getting pains again especially with my skull. Fortunately it was only about a week washout. From being on pd1 about day 3 to about day 13 I was having lots of pressure with my skull. One of the visible tumors is about half the size of an egg there. Just touching my skull in certain spots would cause massive pain. Then suddenly on about day 14 all that eased off a lot. I didn't mention to anyone but I also briefly felt like a cool soothing liquid between my skin and skull bone about 4 times during all that time.
Now I'm doing as ok as I can be. Not great but I've been worse. The doctor said it will take 5 or 6 doses before he knows if it is working.
Also during that pain the pain pills would wear off too soon for me. Granted I only did tylenol instead of their precription stuff they've prescribed in the past. So instead I numb the pain spots with a heating pad or ice pack. Seemed to give me some releaf but dunno if that works for everyone.
Good luck.
Artie
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- June 16, 2014 at 1:25 pm
Thanks for your reply. I've been using ice on some of the more painful areas, but have also noticed that the anti-inflammatories (I'm using ibuprofen) are wearing off too quickly. I hate most of the prescription stuff- it makes me fell terrible and knocks me out for the entire day so if at all possible I refuse them as well. I'm hoping I'll get some easing up of some of this discomfort before too much longer. I'm really hoping that even if it takes a little while that these drugs work and I get a good response.
Wishing you the best and a good response,
-Eva
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- June 16, 2014 at 1:25 pm
Thanks for your reply. I've been using ice on some of the more painful areas, but have also noticed that the anti-inflammatories (I'm using ibuprofen) are wearing off too quickly. I hate most of the prescription stuff- it makes me fell terrible and knocks me out for the entire day so if at all possible I refuse them as well. I'm hoping I'll get some easing up of some of this discomfort before too much longer. I'm really hoping that even if it takes a little while that these drugs work and I get a good response.
Wishing you the best and a good response,
-Eva
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- June 21, 2014 at 11:43 am
Hi Eva, so glad you are now on PD1, I wish you success and a prolonged remission. My husband is now on his 4th month of the combo, he has also received WBR, now on his 3rd round of radiation to treat pain in his hip (bone mets). He is in pain despite tons of pain meds.
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- June 21, 2014 at 11:43 am
Hi Eva, so glad you are now on PD1, I wish you success and a prolonged remission. My husband is now on his 4th month of the combo, he has also received WBR, now on his 3rd round of radiation to treat pain in his hip (bone mets). He is in pain despite tons of pain meds.
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- June 21, 2014 at 11:43 am
Hi Eva, so glad you are now on PD1, I wish you success and a prolonged remission. My husband is now on his 4th month of the combo, he has also received WBR, now on his 3rd round of radiation to treat pain in his hip (bone mets). He is in pain despite tons of pain meds.
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- June 16, 2014 at 1:25 pm
Thanks for your reply. I've been using ice on some of the more painful areas, but have also noticed that the anti-inflammatories (I'm using ibuprofen) are wearing off too quickly. I hate most of the prescription stuff- it makes me fell terrible and knocks me out for the entire day so if at all possible I refuse them as well. I'm hoping I'll get some easing up of some of this discomfort before too much longer. I'm really hoping that even if it takes a little while that these drugs work and I get a good response.
Wishing you the best and a good response,
-Eva
-
- June 15, 2014 at 3:42 pm
Hey Eva I'm right there with you. I finally decided to only check my 3 visible tumors first thing in the morning then try to forget about it as if we really can but I force myself. I had my 2nd dose of Merck's EAP pd1 last Wednesday. I take it as a good sign the 3 visible tumors don't seem to be any bigger. Of course we never know until the scan what is going on underneath. I certainly have lots of internal only ones too.
About half a day from being off the combo pills I started getting pains again especially with my skull. Fortunately it was only about a week washout. From being on pd1 about day 3 to about day 13 I was having lots of pressure with my skull. One of the visible tumors is about half the size of an egg there. Just touching my skull in certain spots would cause massive pain. Then suddenly on about day 14 all that eased off a lot. I didn't mention to anyone but I also briefly felt like a cool soothing liquid between my skin and skull bone about 4 times during all that time.
Now I'm doing as ok as I can be. Not great but I've been worse. The doctor said it will take 5 or 6 doses before he knows if it is working.
Also during that pain the pain pills would wear off too soon for me. Granted I only did tylenol instead of their precription stuff they've prescribed in the past. So instead I numb the pain spots with a heating pad or ice pack. Seemed to give me some releaf but dunno if that works for everyone.
Good luck.
Artie
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