› Forums › General Melanoma Community › Stable after WBR, on to PD-1 trial
- This topic has 36 replies, 6 voices, and was last updated 11 years, 8 months ago by
Tina D.
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- August 16, 2013 at 6:09 pm
I just thought I would offer some good news and encouragement to those who are currently dealing with brain mets, seeking access to PD-1 trials, and/or considering WBR. You can read my profile for a more in-depth history of my wife Heather, but the quick summary is that she did IL-2 last fall and then Ipi which ended in March. Everything was stable after Ipi except for 2 tiny brain mets of her meninges (2mm and 1mm). SRS stabilized them in May, but a new one popped up (4mm) on the June scans.
I just thought I would offer some good news and encouragement to those who are currently dealing with brain mets, seeking access to PD-1 trials, and/or considering WBR. You can read my profile for a more in-depth history of my wife Heather, but the quick summary is that she did IL-2 last fall and then Ipi which ended in March. Everything was stable after Ipi except for 2 tiny brain mets of her meninges (2mm and 1mm). SRS stabilized them in May, but a new one popped up (4mm) on the June scans. The doctors were worried about it being leptomeningeal disease, but more MRIs ruled this out.
Rather than risk this happening again with more SRS, her doctors at Emory (and 2nd opinion at MD Anderson) recommended Whole Brain Radiation plus Temodar. The idea being that it would stabilize everything (at worst) and prevent new things from popping up. July was no fun going through the treatment (fatigure, nausea, vomiting, daily trips to radiation), but it was all worth it!
She got a "stable" MRI completed on Tuesday this week and we went straight to Vanderbilt yesterday to do the screening for the MK-3475 vs Chemo trial (for patients progressing on Ipi). Things are moving very fast and we will found out later today or tomorrow if she has been officially accepted and whether she will start on PD-1 or chemo. There is crossover available if you get chemo, so we are comforted by that. The trial nurse said that so far every single patient of theirs on the chemo arm has crossed over at the 12-week mark. Makes you wonder why it's necessary to keep that part going, but rules are rules.
Vanderbilt has an outstanding melanoma team and a TON of trials available, including at least 4 anti-PD1 trials (BMS & Merck vs chemo, Ipi-PD1 'concurrent' combo, and Ipi-PD1 'sequential'). Though we are fairly new there and drive up from Atlanta, we are very happy with everything. Yesterday we had to do labs, consent forms, doctor visit, EKG, and a CT scan. Never had to wait more than 10 minutes for anything except the CT. Dr. Puzanov is quite a character and very upbeat/encouraging. Appreciate any thoughts and prayers you can send us as we await the news from randomization. We want the good stuff right out of the gate!
Thank you,
Steve
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- August 16, 2013 at 6:40 pm
It sounds as though you and Heather have been through it! Sorry for that, but so glad that things are looking up! Living in TN as a PNP and melanoma patient, you are right to feel as though you are in good hands at Vandy. I hope things work out for you to join the anti-PD1 trial. I finished 2 1/2 years of the BMS anti-PD1 (now named Nivolumab) after brain and lung mets and remain NED today, almost 3 months post last infusion. Though slightly behind in trial time, the Merck product is doing equally well, even better in a few studies, to the BMS anti-PD1. Yes…it is very frustrating that these drugs….which have ALREADY proven themselves better than chemo for melanoma….are still being compared to it at the expense of real live human beings! However, you are correct that having a cross-over clause makes these trials a doable alternative for a really sucky situation. I wish you both the very best. C -
- August 16, 2013 at 6:40 pm
It sounds as though you and Heather have been through it! Sorry for that, but so glad that things are looking up! Living in TN as a PNP and melanoma patient, you are right to feel as though you are in good hands at Vandy. I hope things work out for you to join the anti-PD1 trial. I finished 2 1/2 years of the BMS anti-PD1 (now named Nivolumab) after brain and lung mets and remain NED today, almost 3 months post last infusion. Though slightly behind in trial time, the Merck product is doing equally well, even better in a few studies, to the BMS anti-PD1. Yes…it is very frustrating that these drugs….which have ALREADY proven themselves better than chemo for melanoma….are still being compared to it at the expense of real live human beings! However, you are correct that having a cross-over clause makes these trials a doable alternative for a really sucky situation. I wish you both the very best. C -
- August 16, 2013 at 6:40 pm
It sounds as though you and Heather have been through it! Sorry for that, but so glad that things are looking up! Living in TN as a PNP and melanoma patient, you are right to feel as though you are in good hands at Vandy. I hope things work out for you to join the anti-PD1 trial. I finished 2 1/2 years of the BMS anti-PD1 (now named Nivolumab) after brain and lung mets and remain NED today, almost 3 months post last infusion. Though slightly behind in trial time, the Merck product is doing equally well, even better in a few studies, to the BMS anti-PD1. Yes…it is very frustrating that these drugs….which have ALREADY proven themselves better than chemo for melanoma….are still being compared to it at the expense of real live human beings! However, you are correct that having a cross-over clause makes these trials a doable alternative for a really sucky situation. I wish you both the very best. C -
- August 16, 2013 at 6:45 pm
Thank you, C! I have been following your blog for a while now and really appreciate all the stories, data, and feelings you have shared there. I had actually contacted Dr. Weber at Moffit back in May or June to discuss their PD-1 trials, but found they had a long waiting list at the time… and Vandy is drive-able for us. Thanks for the thoughts and well-wishes, and congrats on your success with the stage III trial!
Steve
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- August 16, 2013 at 7:47 pm
Thank you Steve for posting, I’m super excitef for you and Heather.
I just finished my 3rd infusion of ipi and also taking Dabrafenib, according to the one met on my arm that I can feel and see I seem to be stable. Mri in a couple weeks and last infusion first part of September then hopefully off to anti pd 1 trial. This is great and encouraging news.
All my best to you and Heather!
Denise -
- August 16, 2013 at 7:47 pm
Thank you Steve for posting, I’m super excitef for you and Heather.
I just finished my 3rd infusion of ipi and also taking Dabrafenib, according to the one met on my arm that I can feel and see I seem to be stable. Mri in a couple weeks and last infusion first part of September then hopefully off to anti pd 1 trial. This is great and encouraging news.
All my best to you and Heather!
Denise -
- August 16, 2013 at 7:47 pm
Thank you Steve for posting, I’m super excitef for you and Heather.
I just finished my 3rd infusion of ipi and also taking Dabrafenib, according to the one met on my arm that I can feel and see I seem to be stable. Mri in a couple weeks and last infusion first part of September then hopefully off to anti pd 1 trial. This is great and encouraging news.
All my best to you and Heather!
Denise -
- August 16, 2013 at 8:08 pm
Sounds like you have been thru alot and I’m glad you found a trial that looks like it will work out. I am on the Merck trial at Vandy and have been a patient there and stage 4 over 2 years. Things do NOT usually run so quickly LOL!!! -
- August 16, 2013 at 8:08 pm
Sounds like you have been thru alot and I’m glad you found a trial that looks like it will work out. I am on the Merck trial at Vandy and have been a patient there and stage 4 over 2 years. Things do NOT usually run so quickly LOL!!! -
- August 16, 2013 at 8:08 pm
Sounds like you have been thru alot and I’m glad you found a trial that looks like it will work out. I am on the Merck trial at Vandy and have been a patient there and stage 4 over 2 years. Things do NOT usually run so quickly LOL!!! -
- August 16, 2013 at 9:18 pm
It is very nice to meet you! Glad that you have found the blog helpful. It helps me…and is hopefully a bit of use to others as well. It is a strange experience to be a “rattie” in a trial, as so many on this forum know all too well. It is also odd to be in a Phase I trial like mine, when there are no other people to compare things with. On the other hand…when you do a Phase I trial…you are getting the med in question. There are no comparisons to other treatments since the purpose is to determine most effective dosing with least effects. All my fingers and toes are crossed for you both. Keep us posted on what you do. Yours, c -
- August 16, 2013 at 9:59 pm
Ha, I do think we had a rare experience yesterday with very little waiting. This was our third visit there… the first time I think we waited 3+ hours to see Dr. P. I would love for the two of you to meet if we ever happen to be there at the same time. I have followed your posts and blog as well over the last several months and think you gals would be fast friends. If case anyone is interested in more posts, experiences from various treatments, etc… we have a CaringBridge page set up here: http://www.caringbridge.org/visit/heatherhampton
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- August 19, 2013 at 1:43 pm
Hi Steve,
I am in the Merck trial at Vanderbilt, as well. We drive down from SW Indiana. I have been so impressed with all the staff! The clinical trial nurses worked very quickly to get all my paperwork and such taken care of, and before I knew it I was awaiting randomization! The crossover option is indeed a huge comfort while you wait. Appointments with the Dr can run pretty far behind, I am told… but I really have always thought that I do not mind a Dr who will take as much time as needed with a patient, whether it is me or the person before me — those Drs are worth the wait 🙂 . I am glad your wife was able to enter the trial, though it slounds like a rather rough road getting here! Prayers for you this morning as you wait….
Tina
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- August 19, 2013 at 1:43 pm
Hi Steve,
I am in the Merck trial at Vanderbilt, as well. We drive down from SW Indiana. I have been so impressed with all the staff! The clinical trial nurses worked very quickly to get all my paperwork and such taken care of, and before I knew it I was awaiting randomization! The crossover option is indeed a huge comfort while you wait. Appointments with the Dr can run pretty far behind, I am told… but I really have always thought that I do not mind a Dr who will take as much time as needed with a patient, whether it is me or the person before me — those Drs are worth the wait 🙂 . I am glad your wife was able to enter the trial, though it slounds like a rather rough road getting here! Prayers for you this morning as you wait….
Tina
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- August 19, 2013 at 1:43 pm
Hi Steve,
I am in the Merck trial at Vanderbilt, as well. We drive down from SW Indiana. I have been so impressed with all the staff! The clinical trial nurses worked very quickly to get all my paperwork and such taken care of, and before I knew it I was awaiting randomization! The crossover option is indeed a huge comfort while you wait. Appointments with the Dr can run pretty far behind, I am told… but I really have always thought that I do not mind a Dr who will take as much time as needed with a patient, whether it is me or the person before me — those Drs are worth the wait 🙂 . I am glad your wife was able to enter the trial, though it slounds like a rather rough road getting here! Prayers for you this morning as you wait….
Tina
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- August 20, 2013 at 4:35 pm
Thanks Tina. We did have a really long wait for Dr. P on the previous visit, so we never know what to expect. At least the waiting area is huge and comfortable (and campus in general very pretty).
We have/had so many people praying for us and things seem to be turning around for the better after a long year of failed treatments and bad side effects.
Today we received word that Heather is officially enrolled and was randomized to the study drug (PD-1)!! We could not be happier or more blessed. Sounds like treatment days will be Thursdays for us. Praying for good results and a big response by the week 12 scans. Hallelujah!
Steve
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- August 16, 2013 at 6:45 pm
Thank you, C! I have been following your blog for a while now and really appreciate all the stories, data, and feelings you have shared there. I had actually contacted Dr. Weber at Moffit back in May or June to discuss their PD-1 trials, but found they had a long waiting list at the time… and Vandy is drive-able for us. Thanks for the thoughts and well-wishes, and congrats on your success with the stage III trial!
Steve
-
- August 16, 2013 at 6:45 pm
Thank you, C! I have been following your blog for a while now and really appreciate all the stories, data, and feelings you have shared there. I had actually contacted Dr. Weber at Moffit back in May or June to discuss their PD-1 trials, but found they had a long waiting list at the time… and Vandy is drive-able for us. Thanks for the thoughts and well-wishes, and congrats on your success with the stage III trial!
Steve
-
- August 16, 2013 at 9:18 pm
It is very nice to meet you! Glad that you have found the blog helpful. It helps me…and is hopefully a bit of use to others as well. It is a strange experience to be a “rattie” in a trial, as so many on this forum know all too well. It is also odd to be in a Phase I trial like mine, when there are no other people to compare things with. On the other hand…when you do a Phase I trial…you are getting the med in question. There are no comparisons to other treatments since the purpose is to determine most effective dosing with least effects. All my fingers and toes are crossed for you both. Keep us posted on what you do. Yours, c -
- August 16, 2013 at 9:18 pm
It is very nice to meet you! Glad that you have found the blog helpful. It helps me…and is hopefully a bit of use to others as well. It is a strange experience to be a “rattie” in a trial, as so many on this forum know all too well. It is also odd to be in a Phase I trial like mine, when there are no other people to compare things with. On the other hand…when you do a Phase I trial…you are getting the med in question. There are no comparisons to other treatments since the purpose is to determine most effective dosing with least effects. All my fingers and toes are crossed for you both. Keep us posted on what you do. Yours, c -
- August 16, 2013 at 9:59 pm
Ha, I do think we had a rare experience yesterday with very little waiting. This was our third visit there… the first time I think we waited 3+ hours to see Dr. P. I would love for the two of you to meet if we ever happen to be there at the same time. I have followed your posts and blog as well over the last several months and think you gals would be fast friends. If case anyone is interested in more posts, experiences from various treatments, etc… we have a CaringBridge page set up here: http://www.caringbridge.org/visit/heatherhampton
-
- August 16, 2013 at 9:59 pm
Ha, I do think we had a rare experience yesterday with very little waiting. This was our third visit there… the first time I think we waited 3+ hours to see Dr. P. I would love for the two of you to meet if we ever happen to be there at the same time. I have followed your posts and blog as well over the last several months and think you gals would be fast friends. If case anyone is interested in more posts, experiences from various treatments, etc… we have a CaringBridge page set up here: http://www.caringbridge.org/visit/heatherhampton
-
- August 20, 2013 at 4:35 pm
Thanks Tina. We did have a really long wait for Dr. P on the previous visit, so we never know what to expect. At least the waiting area is huge and comfortable (and campus in general very pretty).
We have/had so many people praying for us and things seem to be turning around for the better after a long year of failed treatments and bad side effects.
Today we received word that Heather is officially enrolled and was randomized to the study drug (PD-1)!! We could not be happier or more blessed. Sounds like treatment days will be Thursdays for us. Praying for good results and a big response by the week 12 scans. Hallelujah!
Steve
-
- August 20, 2013 at 4:35 pm
Thanks Tina. We did have a really long wait for Dr. P on the previous visit, so we never know what to expect. At least the waiting area is huge and comfortable (and campus in general very pretty).
We have/had so many people praying for us and things seem to be turning around for the better after a long year of failed treatments and bad side effects.
Today we received word that Heather is officially enrolled and was randomized to the study drug (PD-1)!! We could not be happier or more blessed. Sounds like treatment days will be Thursdays for us. Praying for good results and a big response by the week 12 scans. Hallelujah!
Steve
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