› Forums › General Melanoma Community › Rollcall Anti-pd1 patients
- This topic has 39 replies, 7 voices, and was last updated 11 years ago by
jjw2014.
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- February 20, 2013 at 7:59 am
Hello all, i wanted to start a post for patients going through Anti-Pd1 trials, so we can let each other know as well as everyone else, how treatments are working, how you are feeling, and what side effects, (if any) you have experienced. Also, if you are a responder, how quickly did it work for you to see tumors shrinking (if measurable by eye)
My boyfriend Randy started the merk Anti-pd1 trial at UCLA with Dr. Ribas, and had his first infusion February 1st. He is in the arm that had ippi previously, and gets the 10mg dose. He goes for his second infusion monday. So far, i have noticed, as well as he, that his energy has gone up a lot. Before, he would take multiple small naps a day, and get fatigued after being up and about for an hour. Now, he is more active around the house, and doesn't need to stop for naps as he did before. He still isn't back to normal as he lost about 30 pounds from a partial bowel obstruction cause by a tumor in his small intestine a few months ago, and hasn't gained muscle back. Besides from that he has had some joint pain, although im not sure it's from the drug as he was having some knee joint pain before starting. Also, some slight muscle ache in his arm. He also said he had a minor headache for a little while, and his eye was sore, but it went away. (he never gets headaches). His tumors we can measure from sight seem to have stopped growing, as far as we think, but i don't think it's smaller yet. Hoping the next infusions will give his immune system that extra boost it needs to kick Melanomas butt!
I hope all of you melanoma warriors are feeling well today, and i hope all of you have success in your treatments!
-Amanda (girlfriend of patient Randy Stout stage IV, no primary)
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- February 20, 2013 at 3:59 pm
Hello Amanda,
I am a little confused you said a trial for Anti PD1 and then you said he is on the arm that had Ippi 10 mg. Is he on Ippi or Anti PD1? thanks for clarifing this for me.
Judy (loving wife of Gene Stage IV and now NED)
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- February 20, 2013 at 7:15 pm
Gene – guessing she means the arm of PD1 (at 10mg) + Ipi.
I am in the Merck trial also. I already completed ipi so I'm in the arm that does either 2mg or 10mg. I was told I'm getting the 2mg. Had first dose Jan 21st and 2nd dose Feb 11th. So far I haven't noticed any major side effects. Got itchy again after the 2nd dose. Some fatigue. Would love to be able to take naps throughout the day but working full time still. I have had incrediblly dry skin! and my eyes have been really dry and congested but I'm sure that is partially due to the head cold I'm just getting over…
Guessing I'll get scanned sometime early april. That will be my 12 month mark. Finished last dose of Ipi Nov 27th. Scans Dec 18th showed growth (I had a tumor removed from my small intestine in oct but there was a lymph node they couldn't remove). Scans Jan 16th showed improvement and they still allowed me to enter the pd1 trial.
Since I can't physcially see or feel any of my tumors it's hard to tell if it's working yet. Although I will say my appetite has been the in probably 6-9 months! I'm constantly hungry! Where before with the intestine involvement I was forcing myself to eat.
Hope that helps some.
Erin
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- February 20, 2013 at 7:15 pm
Gene – guessing she means the arm of PD1 (at 10mg) + Ipi.
I am in the Merck trial also. I already completed ipi so I'm in the arm that does either 2mg or 10mg. I was told I'm getting the 2mg. Had first dose Jan 21st and 2nd dose Feb 11th. So far I haven't noticed any major side effects. Got itchy again after the 2nd dose. Some fatigue. Would love to be able to take naps throughout the day but working full time still. I have had incrediblly dry skin! and my eyes have been really dry and congested but I'm sure that is partially due to the head cold I'm just getting over…
Guessing I'll get scanned sometime early april. That will be my 12 month mark. Finished last dose of Ipi Nov 27th. Scans Dec 18th showed growth (I had a tumor removed from my small intestine in oct but there was a lymph node they couldn't remove). Scans Jan 16th showed improvement and they still allowed me to enter the pd1 trial.
Since I can't physcially see or feel any of my tumors it's hard to tell if it's working yet. Although I will say my appetite has been the in probably 6-9 months! I'm constantly hungry! Where before with the intestine involvement I was forcing myself to eat.
Hope that helps some.
Erin
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- February 20, 2013 at 7:15 pm
Gene – guessing she means the arm of PD1 (at 10mg) + Ipi.
I am in the Merck trial also. I already completed ipi so I'm in the arm that does either 2mg or 10mg. I was told I'm getting the 2mg. Had first dose Jan 21st and 2nd dose Feb 11th. So far I haven't noticed any major side effects. Got itchy again after the 2nd dose. Some fatigue. Would love to be able to take naps throughout the day but working full time still. I have had incrediblly dry skin! and my eyes have been really dry and congested but I'm sure that is partially due to the head cold I'm just getting over…
Guessing I'll get scanned sometime early april. That will be my 12 month mark. Finished last dose of Ipi Nov 27th. Scans Dec 18th showed growth (I had a tumor removed from my small intestine in oct but there was a lymph node they couldn't remove). Scans Jan 16th showed improvement and they still allowed me to enter the pd1 trial.
Since I can't physcially see or feel any of my tumors it's hard to tell if it's working yet. Although I will say my appetite has been the in probably 6-9 months! I'm constantly hungry! Where before with the intestine involvement I was forcing myself to eat.
Hope that helps some.
Erin
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- February 20, 2013 at 8:14 pm
Thanks Erin for the reply.
I was confused as Gene is on the Ippi Trial of 10 mg and GMCSF since Mar. 2011. He goes for his next maintenance phase of the Ippi on Mar. 8, and we still do the GMCSF injections everyday for 2 weeks and 1 week off. I haven't been following all the trials so I didn't know about the Anti PD1 at 10 mg as well so that is what confused me.
Gene also has dry skin but with all the tumors gone we can't complain. He also is very itchy but probably because of the dry skin.
Here is hoping this trial works for you and the others on it so you can become NED.
Judy (loving wife of Gene Stage IV and now NED)
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- February 20, 2013 at 8:14 pm
Thanks Erin for the reply.
I was confused as Gene is on the Ippi Trial of 10 mg and GMCSF since Mar. 2011. He goes for his next maintenance phase of the Ippi on Mar. 8, and we still do the GMCSF injections everyday for 2 weeks and 1 week off. I haven't been following all the trials so I didn't know about the Anti PD1 at 10 mg as well so that is what confused me.
Gene also has dry skin but with all the tumors gone we can't complain. He also is very itchy but probably because of the dry skin.
Here is hoping this trial works for you and the others on it so you can become NED.
Judy (loving wife of Gene Stage IV and now NED)
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- February 20, 2013 at 8:14 pm
Thanks Erin for the reply.
I was confused as Gene is on the Ippi Trial of 10 mg and GMCSF since Mar. 2011. He goes for his next maintenance phase of the Ippi on Mar. 8, and we still do the GMCSF injections everyday for 2 weeks and 1 week off. I haven't been following all the trials so I didn't know about the Anti PD1 at 10 mg as well so that is what confused me.
Gene also has dry skin but with all the tumors gone we can't complain. He also is very itchy but probably because of the dry skin.
Here is hoping this trial works for you and the others on it so you can become NED.
Judy (loving wife of Gene Stage IV and now NED)
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- February 21, 2013 at 1:20 am
sorry for any confusion…as far as i recall, if i'm not mistaken. He is getting the merk-3457 (anti-pd1) at 10mg/per kg. He is in the arm that had previously done yervoy, and progressed. He did yervoy last may-july i believe, and that was his only previous treatment, besides wbr which he had before starting yervoy. If you have any more questions, i'll be glad to answer. : )
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- February 21, 2013 at 1:20 am
sorry for any confusion…as far as i recall, if i'm not mistaken. He is getting the merk-3457 (anti-pd1) at 10mg/per kg. He is in the arm that had previously done yervoy, and progressed. He did yervoy last may-july i believe, and that was his only previous treatment, besides wbr which he had before starting yervoy. If you have any more questions, i'll be glad to answer. : )
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- February 21, 2013 at 1:20 am
sorry for any confusion…as far as i recall, if i'm not mistaken. He is getting the merk-3457 (anti-pd1) at 10mg/per kg. He is in the arm that had previously done yervoy, and progressed. He did yervoy last may-july i believe, and that was his only previous treatment, besides wbr which he had before starting yervoy. If you have any more questions, i'll be glad to answer. : )
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- February 21, 2013 at 2:40 am
I just grabbed the paperwork given to randy at the start of the trial and in his Merk-3475 trial:
"If you have melanoma and HAVE received ipilimumab as a treatment for your cancer, you will receive 10mg/kg"
"If you HAVE NOT received ipilimumab as treatment for your cancer, you will receive 10mg/kg or 2mg/kg depending on when you enroll into the study."
"If you have non-small cell lung cancer, you will receive 10mg/kg."
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- February 21, 2013 at 2:40 am
I just grabbed the paperwork given to randy at the start of the trial and in his Merk-3475 trial:
"If you have melanoma and HAVE received ipilimumab as a treatment for your cancer, you will receive 10mg/kg"
"If you HAVE NOT received ipilimumab as treatment for your cancer, you will receive 10mg/kg or 2mg/kg depending on when you enroll into the study."
"If you have non-small cell lung cancer, you will receive 10mg/kg."
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- February 21, 2013 at 2:40 am
I just grabbed the paperwork given to randy at the start of the trial and in his Merk-3475 trial:
"If you have melanoma and HAVE received ipilimumab as a treatment for your cancer, you will receive 10mg/kg"
"If you HAVE NOT received ipilimumab as treatment for your cancer, you will receive 10mg/kg or 2mg/kg depending on when you enroll into the study."
"If you have non-small cell lung cancer, you will receive 10mg/kg."
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- February 21, 2013 at 3:13 am
Hi, I’m doing the Merck Anti PD1 trial at the Angeles Clinic with Dr Hamid. It’s interesting that you all know the dose you are getting. The trial I’m on takes patients that have progressed on Yervoy. There are 3 arms one low dose anti PD1, one high dose Anti PD1 and chemotherapy of physicians choice. I got the PD1 but all are blinded to the dose.I received my 4th dose yesterday. I will get scans in 3 weeks. I have had a lot of symptoms, but I think they are due to the disease and not the treatment. I have mets in my liver, spine, pelvis. Due to the liver and bone mets I have pain. Also due to the liver mets I have nausea and vomiting (or it’s the pain medication). I get some fevers, but that could be the disease. No itching, my skin is always dry, no headaches. I feel fine after each treatment like nothing happened.
My LDH has been climbing, it got up to 1600, but yesterday it finally dropped to 1300. I’m hoping thats a sign that it’s finally starting to work. I’ll know more after scans.
Good luck to everyone on this treatment.
Julie
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- February 21, 2013 at 3:13 am
Hi, I’m doing the Merck Anti PD1 trial at the Angeles Clinic with Dr Hamid. It’s interesting that you all know the dose you are getting. The trial I’m on takes patients that have progressed on Yervoy. There are 3 arms one low dose anti PD1, one high dose Anti PD1 and chemotherapy of physicians choice. I got the PD1 but all are blinded to the dose.I received my 4th dose yesterday. I will get scans in 3 weeks. I have had a lot of symptoms, but I think they are due to the disease and not the treatment. I have mets in my liver, spine, pelvis. Due to the liver and bone mets I have pain. Also due to the liver mets I have nausea and vomiting (or it’s the pain medication). I get some fevers, but that could be the disease. No itching, my skin is always dry, no headaches. I feel fine after each treatment like nothing happened.
My LDH has been climbing, it got up to 1600, but yesterday it finally dropped to 1300. I’m hoping thats a sign that it’s finally starting to work. I’ll know more after scans.
Good luck to everyone on this treatment.
Julie
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- February 21, 2013 at 3:13 am
Hi, I’m doing the Merck Anti PD1 trial at the Angeles Clinic with Dr Hamid. It’s interesting that you all know the dose you are getting. The trial I’m on takes patients that have progressed on Yervoy. There are 3 arms one low dose anti PD1, one high dose Anti PD1 and chemotherapy of physicians choice. I got the PD1 but all are blinded to the dose.I received my 4th dose yesterday. I will get scans in 3 weeks. I have had a lot of symptoms, but I think they are due to the disease and not the treatment. I have mets in my liver, spine, pelvis. Due to the liver and bone mets I have pain. Also due to the liver mets I have nausea and vomiting (or it’s the pain medication). I get some fevers, but that could be the disease. No itching, my skin is always dry, no headaches. I feel fine after each treatment like nothing happened.
My LDH has been climbing, it got up to 1600, but yesterday it finally dropped to 1300. I’m hoping thats a sign that it’s finally starting to work. I’ll know more after scans.
Good luck to everyone on this treatment.
Julie
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- February 21, 2013 at 3:42 am
Amanda- I’m also in a Ipi/anti-PD1 trial. However, in my trial I receive the Ipi and Anti PD1 on the same day– so it is difficult to attribute a side effect to a particular drug. This may also be the case when the drugs are given in sequence.since the Ipi is i(hopefully) working in your body for a long time. In terms of the symptoms that I have experienced from the combined drugs–. It’s definitely the joint pain that is the most difficult…. Hip and knees.– and has presented me with something of a mobility issue. X-rays and scans all show that I’m reacting favorably to the treatment on the cancer front– which is the most important thing. I am soldiering on with pain meds — content and convinced I am benefiting from the combination. -
- February 21, 2013 at 3:42 am
Amanda- I’m also in a Ipi/anti-PD1 trial. However, in my trial I receive the Ipi and Anti PD1 on the same day– so it is difficult to attribute a side effect to a particular drug. This may also be the case when the drugs are given in sequence.since the Ipi is i(hopefully) working in your body for a long time. In terms of the symptoms that I have experienced from the combined drugs–. It’s definitely the joint pain that is the most difficult…. Hip and knees.– and has presented me with something of a mobility issue. X-rays and scans all show that I’m reacting favorably to the treatment on the cancer front– which is the most important thing. I am soldiering on with pain meds — content and convinced I am benefiting from the combination. -
- February 21, 2013 at 3:42 am
Amanda- I’m also in a Ipi/anti-PD1 trial. However, in my trial I receive the Ipi and Anti PD1 on the same day– so it is difficult to attribute a side effect to a particular drug. This may also be the case when the drugs are given in sequence.since the Ipi is i(hopefully) working in your body for a long time. In terms of the symptoms that I have experienced from the combined drugs–. It’s definitely the joint pain that is the most difficult…. Hip and knees.– and has presented me with something of a mobility issue. X-rays and scans all show that I’m reacting favorably to the treatment on the cancer front– which is the most important thing. I am soldiering on with pain meds — content and convinced I am benefiting from the combination. -
- February 21, 2013 at 3:43 am
Amanda- I’m also in a Ipi/anti-PD1 trial. However, in my trial I receive the Ipi and Anti PD1 on the same day– so it is difficult to attribute a side effect to a particular drug. This may also be the case when the drugs are given in sequence.since the Ipi is i(hopefully) working in your body for a long time. In terms of the symptoms that I have experienced from the combined drugs–. It’s definitely the joint pain that is the most difficult…. Hip and knees.– and has presented me with something of a mobility issue. X-rays and scans all show that I’m reacting favorably to the treatment on the cancer front– which is the most important thing. I am soldiering on with pain meds — content and convinced I am benefiting from the combination. -
- February 21, 2013 at 3:43 am
Amanda- I’m also in a Ipi/anti-PD1 trial. However, in my trial I receive the Ipi and Anti PD1 on the same day– so it is difficult to attribute a side effect to a particular drug. This may also be the case when the drugs are given in sequence.since the Ipi is i(hopefully) working in your body for a long time. In terms of the symptoms that I have experienced from the combined drugs–. It’s definitely the joint pain that is the most difficult…. Hip and knees.– and has presented me with something of a mobility issue. X-rays and scans all show that I’m reacting favorably to the treatment on the cancer front– which is the most important thing. I am soldiering on with pain meds — content and convinced I am benefiting from the combination. -
- February 21, 2013 at 3:43 am
Amanda- I’m also in a Ipi/anti-PD1 trial. However, in my trial I receive the Ipi and Anti PD1 on the same day– so it is difficult to attribute a side effect to a particular drug. This may also be the case when the drugs are given in sequence.since the Ipi is i(hopefully) working in your body for a long time. In terms of the symptoms that I have experienced from the combined drugs–. It’s definitely the joint pain that is the most difficult…. Hip and knees.– and has presented me with something of a mobility issue. X-rays and scans all show that I’m reacting favorably to the treatment on the cancer front– which is the most important thing. I am soldiering on with pain meds — content and convinced I am benefiting from the combination.-
- February 21, 2013 at 4:28 am
gabsound. im not sure why you trial is randomized as i thought the trials for pd1 were still in eary stage and everyone was getting the drug? Also, to verify, i myself am not the patient, my boyfriend Randy is. I've been reading on this board for almost a year learning all i can. Actually this board is the whole reason my boyfriend is even on pd1. I got all the info from here, and told his oncologist we wanted this drug. I called dr. ribas and here we are.
G.Samsa, Knee joint pain and some arm muscle pain are the most apparant issue right now.
Also to clarify, Randy is not on a trial to use ipi and pd1 as a combo, rather he did ipi in the past, and now he is doing pd1 alone.
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- February 21, 2013 at 4:28 am
gabsound. im not sure why you trial is randomized as i thought the trials for pd1 were still in eary stage and everyone was getting the drug? Also, to verify, i myself am not the patient, my boyfriend Randy is. I've been reading on this board for almost a year learning all i can. Actually this board is the whole reason my boyfriend is even on pd1. I got all the info from here, and told his oncologist we wanted this drug. I called dr. ribas and here we are.
G.Samsa, Knee joint pain and some arm muscle pain are the most apparant issue right now.
Also to clarify, Randy is not on a trial to use ipi and pd1 as a combo, rather he did ipi in the past, and now he is doing pd1 alone.
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- February 21, 2013 at 4:28 am
gabsound. im not sure why you trial is randomized as i thought the trials for pd1 were still in eary stage and everyone was getting the drug? Also, to verify, i myself am not the patient, my boyfriend Randy is. I've been reading on this board for almost a year learning all i can. Actually this board is the whole reason my boyfriend is even on pd1. I got all the info from here, and told his oncologist we wanted this drug. I called dr. ribas and here we are.
G.Samsa, Knee joint pain and some arm muscle pain are the most apparant issue right now.
Also to clarify, Randy is not on a trial to use ipi and pd1 as a combo, rather he did ipi in the past, and now he is doing pd1 alone.
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- February 21, 2013 at 3:43 pm
I started the pd1 trial over 4 months & progressed so I am stopping pd1. I had yervoy ( 4 infusions) prior to starting pd1. I prgressed on Yervoy. My doctor tested me for pdl1 which is suppose to indicated that pd1 drug will work. The test showed that I had pdl1 but still pd1 drug did not work for my.
I am now going to start IL2. My doctor 4 months ago gave me the choice of IL2 or pd1 trial. I chose PD1 trial which turned out to be the wrong choice for me. I wish 4 months ago that I picked IL2. I am praying that IL2 stop this terrible disease for me.
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- February 21, 2013 at 3:43 pm
I started the pd1 trial over 4 months & progressed so I am stopping pd1. I had yervoy ( 4 infusions) prior to starting pd1. I prgressed on Yervoy. My doctor tested me for pdl1 which is suppose to indicated that pd1 drug will work. The test showed that I had pdl1 but still pd1 drug did not work for my.
I am now going to start IL2. My doctor 4 months ago gave me the choice of IL2 or pd1 trial. I chose PD1 trial which turned out to be the wrong choice for me. I wish 4 months ago that I picked IL2. I am praying that IL2 stop this terrible disease for me.
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- February 21, 2013 at 3:43 pm
I started the pd1 trial over 4 months & progressed so I am stopping pd1. I had yervoy ( 4 infusions) prior to starting pd1. I prgressed on Yervoy. My doctor tested me for pdl1 which is suppose to indicated that pd1 drug will work. The test showed that I had pdl1 but still pd1 drug did not work for my.
I am now going to start IL2. My doctor 4 months ago gave me the choice of IL2 or pd1 trial. I chose PD1 trial which turned out to be the wrong choice for me. I wish 4 months ago that I picked IL2. I am praying that IL2 stop this terrible disease for me.
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- February 21, 2013 at 3:49 pm
I started the pd1 trial over 4 months & progressed so I am stopping pd1. I had yervoy ( 4 infusions) prior to starting pd1. I prgressed on Yervoy. My doctor tested me for pdl1 which is suppose to indicated that pd1 drug will work.
The test showed that I had pdl1 but still pd1 drug did not work for my.I am now going to start IL2. My doctor 4 months ago gave me the choice of IL2 or pd1 trial. I chose PD1 trial which turned out to be the wrong choice for me. I wish 4 months ago that I picked IL2. I am praying that IL2 stops this terrible disease for me.
-
- February 21, 2013 at 3:49 pm
I started the pd1 trial over 4 months & progressed so I am stopping pd1. I had yervoy ( 4 infusions) prior to starting pd1. I prgressed on Yervoy. My doctor tested me for pdl1 which is suppose to indicated that pd1 drug will work.
The test showed that I had pdl1 but still pd1 drug did not work for my.I am now going to start IL2. My doctor 4 months ago gave me the choice of IL2 or pd1 trial. I chose PD1 trial which turned out to be the wrong choice for me. I wish 4 months ago that I picked IL2. I am praying that IL2 stops this terrible disease for me.
-
- February 21, 2013 at 3:49 pm
I started the pd1 trial over 4 months & progressed so I am stopping pd1. I had yervoy ( 4 infusions) prior to starting pd1. I prgressed on Yervoy. My doctor tested me for pdl1 which is suppose to indicated that pd1 drug will work.
The test showed that I had pdl1 but still pd1 drug did not work for my.I am now going to start IL2. My doctor 4 months ago gave me the choice of IL2 or pd1 trial. I chose PD1 trial which turned out to be the wrong choice for me. I wish 4 months ago that I picked IL2. I am praying that IL2 stops this terrible disease for me.
-
- February 21, 2013 at 3:52 pm
I started the pd1 trial over 4 months & progressed so I am stopping pd1. I had yervoy ( 4 infusions) prior to starting pd1. I prgressed on Yervoy. My doctor tested me for pdl1 which is suppose to indicated that pd1 drug will work.
The test showed that I had pdl1 but still pd1 drug did not work for my.I am now going to start IL2. My doctor 4 months ago gave me the choice of IL2 or pd1 trial. I chose PD1 trial which turned out to be the wrong choice for me. I wish 4 months ago that I picked IL2. I am praying that IL2 stops this terrible disease for me.
-
- February 21, 2013 at 3:52 pm
I started the pd1 trial over 4 months & progressed so I am stopping pd1. I had yervoy ( 4 infusions) prior to starting pd1. I prgressed on Yervoy. My doctor tested me for pdl1 which is suppose to indicated that pd1 drug will work.
The test showed that I had pdl1 but still pd1 drug did not work for my.I am now going to start IL2. My doctor 4 months ago gave me the choice of IL2 or pd1 trial. I chose PD1 trial which turned out to be the wrong choice for me. I wish 4 months ago that I picked IL2. I am praying that IL2 stops this terrible disease for me.
-
- February 21, 2013 at 3:52 pm
I started the pd1 trial over 4 months & progressed so I am stopping pd1. I had yervoy ( 4 infusions) prior to starting pd1. I prgressed on Yervoy. My doctor tested me for pdl1 which is suppose to indicated that pd1 drug will work.
The test showed that I had pdl1 but still pd1 drug did not work for my.I am now going to start IL2. My doctor 4 months ago gave me the choice of IL2 or pd1 trial. I chose PD1 trial which turned out to be the wrong choice for me. I wish 4 months ago that I picked IL2. I am praying that IL2 stops this terrible disease for me.
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- April 21, 2014 at 1:04 pm
Hi My sister is about to start IL2. Wanted to see how you are doing. She was just recently diagnosed so I want to see what her options and to see if she's a potential candidate for PD1. reading your post I guess they can tell if you will respond by testing for PD1? Are you Nras or BRAF?
Thanks
Jennifdr
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- April 21, 2014 at 1:04 pm
Hi My sister is about to start IL2. Wanted to see how you are doing. She was just recently diagnosed so I want to see what her options and to see if she's a potential candidate for PD1. reading your post I guess they can tell if you will respond by testing for PD1? Are you Nras or BRAF?
Thanks
Jennifdr
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- April 21, 2014 at 1:04 pm
Hi My sister is about to start IL2. Wanted to see how you are doing. She was just recently diagnosed so I want to see what her options and to see if she's a potential candidate for PD1. reading your post I guess they can tell if you will respond by testing for PD1? Are you Nras or BRAF?
Thanks
Jennifdr
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