› Forums › General Melanoma Community › 3rd keytruda scan not good enough
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bjorne.
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- April 21, 2015 at 2:39 am
I've had a good 11 month run on keytruda plus 8 spots of radiation. Still it hasn't been enough. Stuff keeps growing. Since it's doing some good and it's fda approved I can stay on it until I get on something else.
Basically 7 are shrinking. All at or near radiated spots. 5 are growing including the t10 that almost paralyzed me last year. One new one is on or in my left kidney which is suprising because it is new and pretty much all my other new tumors in the past started in the bones and grew out. The rest of im assuming around 20 stayed the same. So I'm glad keytruda is fda approved because trials would have kicked me out. The docs were actually debating whether to give me it today and decided to because it is doing some good. After all keeping 20 tumors at bay and other stuff is pretty good but not good enough. Kind of weird how each scan shows things growing but they are usually different spots. Also by growing 3 of those 5 are declared that because of the uptake not thst they see a larger mass outside the bone. The other 2 are declard that because of the uptake and soft tissue mass is larger. The new one on the kidney is also a tissue mass.
im very suprised the scan wasn't better. But I'm glad finally Siteman did a fairly detailed report that at least listed each tumor shrinking and growing. Also it could have been worse but I was expecting much better. Way better than the first 3 meds where everything kept growing though.
Now to scramble and get on a new treatment. Siteman has 30 open slots for the ERK trial. It is BVD-523 by BioMed valley discoveries. It is part 2 of phase 1 where they have already figured out the dose and are expanding to more people. Depending on which nurse you believe either 1 patient has had a partial response or 2 patients have had partial remission. That is with about 16 patients none of which are at Siteman because they haven't recruited anyone there yet. About 5 places have this trial. The side affects so far seem very similar to zelboraf. Since neither zelboraf nor the taf mek combo shrank anything I don't think this is the right trial for me but my doc does but he was out of town so couldn't talk about it.
Tomorrow I guess I'll call university of Chicago for an appointment with dr Gajewski or dr Luke and try to finally go there and try to get into their opdivo pd1 anti lag3 trial or see what their thoughts are on what I should do.
Also TIL with dr Rosenberg is still an option but based on what Catherine said I'm not sure if I should pursue that.
im disqualified from the huntsman virus treatment because of bone metastisis.
Since keytruda is not enough for the internal stuff the trials for lesion injections with pd1 are not a good choice.
A lot of the other trials like pd1 anti kir and stuff I'm disqualified for cause I've had pd1. Although I may be missing something.
im not seeing a Ido pd1 combo or anything that might be good unless I'm missing it. Wdvax is still phase 1 and I've heard nothing about how good or bad it is.
So I dunno really what to do. Quite awhile back a lady on here posted how the pd1 anti kir trial failed her and she decided to go to md Anderson. I never heard what treatment she did or how things turned out. Her way of thinking she already did a pd1 combo so she needed something else. So maybe they have something good I just don't know about.
I just don't want to make a bad decision but I don't see any really good options. Since the t10 is getting worse I feel I only have one last shot at a treatment. I have to make it a good one or I'm probably not going to make it further. Maybe instead of Chicago I should just go to md anderson or memorial Sloan Kettering. But those typically require flying and the assistant doc couldn't say if my spine was ok for it or not based on the pet ct. They would need a mri. But he did say there was no mention of narrowing of the spinal canal and stuff. Plus I can still sit and touch my toes fine which I couldn't do last year when I was almost paralyzed. So I dunno. Also I get wore out fast after only a couple hours traveling. Also I need lots of food and drink or I get weak. Plus my parents who have been taking care of me are not getting any younger. So I just don't know what to do.
Thank you everyone one for your prayers and best wishes. I wish I had better news.
Artie
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- April 21, 2015 at 3:36 am
Oh, Artie! Between every patient…I thought of you today. I am so sorry that today's results were no better. I'm glad you have improved to where you are….but like you….I was hoping for more. I think you do have a plan. I think the anti-LAG3 trial is a real option for you. I am glad you are going to speak with those folks. Some people are very negative about TIL. However, many of those are not in your position. One cannot make the decision you have to make until we walk in your shoes. It is easy to say…oh, posh and bother…when you haven't faced what you have. I really think (fully acknowledging that I have not walked in your shoes either!!!) that I would look into TIL as well. What the hell? Looking and learning about one's options doesn't hurt. ERK is still a possibility as well. I'll wrack my brain for anything else. See what those folks say. Hang in there. You….yes YOU!!! Are a blessing to many. Keep us posted on what you learn. Much love, c
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- April 21, 2015 at 3:36 am
Oh, Artie! Between every patient…I thought of you today. I am so sorry that today's results were no better. I'm glad you have improved to where you are….but like you….I was hoping for more. I think you do have a plan. I think the anti-LAG3 trial is a real option for you. I am glad you are going to speak with those folks. Some people are very negative about TIL. However, many of those are not in your position. One cannot make the decision you have to make until we walk in your shoes. It is easy to say…oh, posh and bother…when you haven't faced what you have. I really think (fully acknowledging that I have not walked in your shoes either!!!) that I would look into TIL as well. What the hell? Looking and learning about one's options doesn't hurt. ERK is still a possibility as well. I'll wrack my brain for anything else. See what those folks say. Hang in there. You….yes YOU!!! Are a blessing to many. Keep us posted on what you learn. Much love, c
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- April 21, 2015 at 11:49 am
So sorry to hear your results but there is some upside to them I think the problem with TIL at NIH is that they only take patients who are in really top condition and you mentioned that qualifying or staying in trial would be difficult for you as even the doc said flying would be. So talk to your docs about combining something with the Keytruda. Maybe Leukine?
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- April 24, 2015 at 3:13 pm
Thanks anonymous. We'll see how things go. I really don't think the spine is as bad yet like it was last year but we shall see.
Artie
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- April 24, 2015 at 3:13 pm
Thanks anonymous. We'll see how things go. I really don't think the spine is as bad yet like it was last year but we shall see.
Artie
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- April 24, 2015 at 3:13 pm
Thanks anonymous. We'll see how things go. I really don't think the spine is as bad yet like it was last year but we shall see.
Artie
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- April 21, 2015 at 11:49 am
So sorry to hear your results but there is some upside to them I think the problem with TIL at NIH is that they only take patients who are in really top condition and you mentioned that qualifying or staying in trial would be difficult for you as even the doc said flying would be. So talk to your docs about combining something with the Keytruda. Maybe Leukine?
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- April 21, 2015 at 11:49 am
So sorry to hear your results but there is some upside to them I think the problem with TIL at NIH is that they only take patients who are in really top condition and you mentioned that qualifying or staying in trial would be difficult for you as even the doc said flying would be. So talk to your docs about combining something with the Keytruda. Maybe Leukine?
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- April 24, 2015 at 3:12 pm
Thank you Celeste. I see that Dr Gajewski on May 5th about the pd1 lag3. However his clinical nurse on the phone didn't seem very optimistic of getting into it. Basically she said it can take 8 weeks for a slot to open but they have many other trials. Seems like kind of their way of discouraging people from that trial since they have so few slots. I'm willing to wait 8 weeks of course for a great treatment no big deal so we shall see what they say in person. I just have in the back of my mind the doc at Sarah Cannon last year I wanted into his pd1 and he would barely talk about it. Fortunately merck's eap happened so I'm still here.
I'm waiting to hear them setting up an appointment with my local doc for next week since he was out and his assistant didn't answer all my questions especially about my spine. I don't really care about the other stuff that grew and the new one supposedly on my kidney. The only thing that concerns me is the worsening of the spine. So that's why I want to see him. I also remember when I was on the taf mek although other tumors grew like crazy and new ones showed up none of my spine grew. I've read of others staying on either pd1 or ipi while on the combo outside of trial so if the spine is bad enough I'm going to see what my local doc says about doing that at least until I can get into a trial.
I've still got the numbers to nih for TIL and they said to call back if I get better which I am better so if I don't like how Chicago goes that might be an option. Since we radiated the shoulder that I intended for them to harvest I guess they might have to harvest that new spot that's supposedly on my kidney. Yes I doubt if it is really there. I don't doubt the new tumor just the location is probably in the bone behind the kidney because that has been mentioned in the past. The way they see where it is is overlaying the CT on the PET and yes it kind of looks like it could be on the kidney. Or the CT was done twice right before the PET so I could easily have moved a couple mm in the 10 minutes or so the the CT was done to the time the PET got to that area. So like someone on here said interpretting a PET scan is more of an art than a science. But the spine I'm still very concerned about although I'm not showing any of the back symptoms I had when I was almost paralyzed so that is great.
Anyway I've typed your ear off. Thanks again.
Artie
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- April 24, 2015 at 3:12 pm
Thank you Celeste. I see that Dr Gajewski on May 5th about the pd1 lag3. However his clinical nurse on the phone didn't seem very optimistic of getting into it. Basically she said it can take 8 weeks for a slot to open but they have many other trials. Seems like kind of their way of discouraging people from that trial since they have so few slots. I'm willing to wait 8 weeks of course for a great treatment no big deal so we shall see what they say in person. I just have in the back of my mind the doc at Sarah Cannon last year I wanted into his pd1 and he would barely talk about it. Fortunately merck's eap happened so I'm still here.
I'm waiting to hear them setting up an appointment with my local doc for next week since he was out and his assistant didn't answer all my questions especially about my spine. I don't really care about the other stuff that grew and the new one supposedly on my kidney. The only thing that concerns me is the worsening of the spine. So that's why I want to see him. I also remember when I was on the taf mek although other tumors grew like crazy and new ones showed up none of my spine grew. I've read of others staying on either pd1 or ipi while on the combo outside of trial so if the spine is bad enough I'm going to see what my local doc says about doing that at least until I can get into a trial.
I've still got the numbers to nih for TIL and they said to call back if I get better which I am better so if I don't like how Chicago goes that might be an option. Since we radiated the shoulder that I intended for them to harvest I guess they might have to harvest that new spot that's supposedly on my kidney. Yes I doubt if it is really there. I don't doubt the new tumor just the location is probably in the bone behind the kidney because that has been mentioned in the past. The way they see where it is is overlaying the CT on the PET and yes it kind of looks like it could be on the kidney. Or the CT was done twice right before the PET so I could easily have moved a couple mm in the 10 minutes or so the the CT was done to the time the PET got to that area. So like someone on here said interpretting a PET scan is more of an art than a science. But the spine I'm still very concerned about although I'm not showing any of the back symptoms I had when I was almost paralyzed so that is great.
Anyway I've typed your ear off. Thanks again.
Artie
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- April 24, 2015 at 3:12 pm
Thank you Celeste. I see that Dr Gajewski on May 5th about the pd1 lag3. However his clinical nurse on the phone didn't seem very optimistic of getting into it. Basically she said it can take 8 weeks for a slot to open but they have many other trials. Seems like kind of their way of discouraging people from that trial since they have so few slots. I'm willing to wait 8 weeks of course for a great treatment no big deal so we shall see what they say in person. I just have in the back of my mind the doc at Sarah Cannon last year I wanted into his pd1 and he would barely talk about it. Fortunately merck's eap happened so I'm still here.
I'm waiting to hear them setting up an appointment with my local doc for next week since he was out and his assistant didn't answer all my questions especially about my spine. I don't really care about the other stuff that grew and the new one supposedly on my kidney. The only thing that concerns me is the worsening of the spine. So that's why I want to see him. I also remember when I was on the taf mek although other tumors grew like crazy and new ones showed up none of my spine grew. I've read of others staying on either pd1 or ipi while on the combo outside of trial so if the spine is bad enough I'm going to see what my local doc says about doing that at least until I can get into a trial.
I've still got the numbers to nih for TIL and they said to call back if I get better which I am better so if I don't like how Chicago goes that might be an option. Since we radiated the shoulder that I intended for them to harvest I guess they might have to harvest that new spot that's supposedly on my kidney. Yes I doubt if it is really there. I don't doubt the new tumor just the location is probably in the bone behind the kidney because that has been mentioned in the past. The way they see where it is is overlaying the CT on the PET and yes it kind of looks like it could be on the kidney. Or the CT was done twice right before the PET so I could easily have moved a couple mm in the 10 minutes or so the the CT was done to the time the PET got to that area. So like someone on here said interpretting a PET scan is more of an art than a science. But the spine I'm still very concerned about although I'm not showing any of the back symptoms I had when I was almost paralyzed so that is great.
Anyway I've typed your ear off. Thanks again.
Artie
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- April 21, 2015 at 3:36 am
Oh, Artie! Between every patient…I thought of you today. I am so sorry that today's results were no better. I'm glad you have improved to where you are….but like you….I was hoping for more. I think you do have a plan. I think the anti-LAG3 trial is a real option for you. I am glad you are going to speak with those folks. Some people are very negative about TIL. However, many of those are not in your position. One cannot make the decision you have to make until we walk in your shoes. It is easy to say…oh, posh and bother…when you haven't faced what you have. I really think (fully acknowledging that I have not walked in your shoes either!!!) that I would look into TIL as well. What the hell? Looking and learning about one's options doesn't hurt. ERK is still a possibility as well. I'll wrack my brain for anything else. See what those folks say. Hang in there. You….yes YOU!!! Are a blessing to many. Keep us posted on what you learn. Much love, c
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- April 21, 2015 at 12:13 pm
Sorry Artie….not what you or any of us wanted to hear. I did end up going and seeing Dr Luke at U of C after you have me info. I don't think it would hurt to seek their opinion. I'm praying for you man…be well.
Josh
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- April 21, 2015 at 12:55 pm
Hi Artie! Well darn or I guess damn damn damn! I was hoping for results that weren't "mixed" but am glad they continued with the Keytruda. I don't know nearly as much about all the trials as you do, but there is one thing you might want to consider. When I had the Mage TCR trial at NIH, I progressed so it was considered a failed trial. However, they started me on Keytruda very soon after. Dr. Atkins considers Keytruda a combination with the Mage TCR and it worked well for me. I still have lymph node issues but almost all have shrunk and tumors have resolved. MAGE TCR is quite similar to TIL. (I didn't qualify for TIL…no tumors that they could use). Your immune system is taken to neutropenia, IL2 is part of it, re-engineered cells, retrovirus, etc. I'd had both brain and spinal surgery prior to going to NIH. I was doing okay but certainly not in tip top condition and I'm now 60, so I'm no spring chicken. So this is just an idea….combining something with Keytruda. They must be exploring that! I've also read that in some people they give K every two weeks rather than three. Artie, you are on my mind and in my prayers every day. Sending you positive thoughts. Every step I take, I envison myself stomping on cancer.
All my best and sending a hug…Terrie
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- April 24, 2015 at 3:17 pm
Thank you Terrie. Most pd1 combo trials they are doing I'm excluded from cause of having had pd1. But there is one is Chicago that I qualify for so that's where I'm going on May 5th. I hope it turns out well. I've also still got the numbers to NIH so I'm keeping that in mind. Good to know you were able to do it so maybe I can make it through to if it turns out that happens.
Artie
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- April 24, 2015 at 3:17 pm
Thank you Terrie. Most pd1 combo trials they are doing I'm excluded from cause of having had pd1. But there is one is Chicago that I qualify for so that's where I'm going on May 5th. I hope it turns out well. I've also still got the numbers to NIH so I'm keeping that in mind. Good to know you were able to do it so maybe I can make it through to if it turns out that happens.
Artie
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- April 24, 2015 at 3:17 pm
Thank you Terrie. Most pd1 combo trials they are doing I'm excluded from cause of having had pd1. But there is one is Chicago that I qualify for so that's where I'm going on May 5th. I hope it turns out well. I've also still got the numbers to NIH so I'm keeping that in mind. Good to know you were able to do it so maybe I can make it through to if it turns out that happens.
Artie
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- April 21, 2015 at 12:55 pm
Hi Artie! Well darn or I guess damn damn damn! I was hoping for results that weren't "mixed" but am glad they continued with the Keytruda. I don't know nearly as much about all the trials as you do, but there is one thing you might want to consider. When I had the Mage TCR trial at NIH, I progressed so it was considered a failed trial. However, they started me on Keytruda very soon after. Dr. Atkins considers Keytruda a combination with the Mage TCR and it worked well for me. I still have lymph node issues but almost all have shrunk and tumors have resolved. MAGE TCR is quite similar to TIL. (I didn't qualify for TIL…no tumors that they could use). Your immune system is taken to neutropenia, IL2 is part of it, re-engineered cells, retrovirus, etc. I'd had both brain and spinal surgery prior to going to NIH. I was doing okay but certainly not in tip top condition and I'm now 60, so I'm no spring chicken. So this is just an idea….combining something with Keytruda. They must be exploring that! I've also read that in some people they give K every two weeks rather than three. Artie, you are on my mind and in my prayers every day. Sending you positive thoughts. Every step I take, I envison myself stomping on cancer.
All my best and sending a hug…Terrie
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- April 21, 2015 at 12:55 pm
Hi Artie! Well darn or I guess damn damn damn! I was hoping for results that weren't "mixed" but am glad they continued with the Keytruda. I don't know nearly as much about all the trials as you do, but there is one thing you might want to consider. When I had the Mage TCR trial at NIH, I progressed so it was considered a failed trial. However, they started me on Keytruda very soon after. Dr. Atkins considers Keytruda a combination with the Mage TCR and it worked well for me. I still have lymph node issues but almost all have shrunk and tumors have resolved. MAGE TCR is quite similar to TIL. (I didn't qualify for TIL…no tumors that they could use). Your immune system is taken to neutropenia, IL2 is part of it, re-engineered cells, retrovirus, etc. I'd had both brain and spinal surgery prior to going to NIH. I was doing okay but certainly not in tip top condition and I'm now 60, so I'm no spring chicken. So this is just an idea….combining something with Keytruda. They must be exploring that! I've also read that in some people they give K every two weeks rather than three. Artie, you are on my mind and in my prayers every day. Sending you positive thoughts. Every step I take, I envison myself stomping on cancer.
All my best and sending a hug…Terrie
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- April 24, 2015 at 3:14 pm
Thanks Josh. I'll see either Dr Gajewski or Dr Luke on May 5th. I hope it goes well. We shall see.
Artie
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- April 24, 2015 at 3:14 pm
Thanks Josh. I'll see either Dr Gajewski or Dr Luke on May 5th. I hope it goes well. We shall see.
Artie
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- April 24, 2015 at 3:14 pm
Thanks Josh. I'll see either Dr Gajewski or Dr Luke on May 5th. I hope it goes well. We shall see.
Artie
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- April 21, 2015 at 12:59 pm
Dear Artie,
I was so sure your scans will be "ok" and you can go on with Keytruda. Though you might find something that works even better or you have the chance to combine something with Keytruda. Your are so strong in what your are doing. I am sure you will find a therapy you are fine with. You have excellent docs in the US and the best options in respect to new drugs.
Just want to let you know that I am sending you some positive thaughts.
All the best, Jenny
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- April 21, 2015 at 12:59 pm
Dear Artie,
I was so sure your scans will be "ok" and you can go on with Keytruda. Though you might find something that works even better or you have the chance to combine something with Keytruda. Your are so strong in what your are doing. I am sure you will find a therapy you are fine with. You have excellent docs in the US and the best options in respect to new drugs.
Just want to let you know that I am sending you some positive thaughts.
All the best, Jenny
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- April 21, 2015 at 12:59 pm
Dear Artie,
I was so sure your scans will be "ok" and you can go on with Keytruda. Though you might find something that works even better or you have the chance to combine something with Keytruda. Your are so strong in what your are doing. I am sure you will find a therapy you are fine with. You have excellent docs in the US and the best options in respect to new drugs.
Just want to let you know that I am sending you some positive thaughts.
All the best, Jenny
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- April 21, 2015 at 2:04 pm
Hi Artie,
I think all the medical stuff has been covered by the many incredible experts here on the board so I'll offer what I can which is TIL therapy. Is this something that you have thought of? The Adoptive T Cell Transfer is being done at MD Anderson.
Also, I live right next to MD Anderson and my husband is a patient there, so if you need anything at all, we will gladly provide housing, transportation, meals, company if you decide to make the trip to MD Anderson.
Praying hard for you and wishing for the very best for you.
Jackie
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- April 21, 2015 at 2:04 pm
Hi Artie,
I think all the medical stuff has been covered by the many incredible experts here on the board so I'll offer what I can which is TIL therapy. Is this something that you have thought of? The Adoptive T Cell Transfer is being done at MD Anderson.
Also, I live right next to MD Anderson and my husband is a patient there, so if you need anything at all, we will gladly provide housing, transportation, meals, company if you decide to make the trip to MD Anderson.
Praying hard for you and wishing for the very best for you.
Jackie
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- April 21, 2015 at 2:04 pm
Hi Artie,
I think all the medical stuff has been covered by the many incredible experts here on the board so I'll offer what I can which is TIL therapy. Is this something that you have thought of? The Adoptive T Cell Transfer is being done at MD Anderson.
Also, I live right next to MD Anderson and my husband is a patient there, so if you need anything at all, we will gladly provide housing, transportation, meals, company if you decide to make the trip to MD Anderson.
Praying hard for you and wishing for the very best for you.
Jackie
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- April 24, 2015 at 3:23 pm
Thank you so much Jackie. I started to do TIL at NIH in Bethesda last winter but my walking went out on me so I got kicked out before the first visit. But they said if I got better to call them back. I'm better again so they are still in the back of my mind. But first I'm going to Chicago on May 5th to see if I can get into their pd1 lag3 trial. If I ever make it to MD Anderson I will keep you folks in mind even if it is just to say hello. A branch of my former coworkers are at the Woodlands there. Looking back I should have probably listened to them and gone to MD Anderson early on but oh well at least I'm still here and in the fight.
Artie
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- April 24, 2015 at 3:23 pm
Thank you so much Jackie. I started to do TIL at NIH in Bethesda last winter but my walking went out on me so I got kicked out before the first visit. But they said if I got better to call them back. I'm better again so they are still in the back of my mind. But first I'm going to Chicago on May 5th to see if I can get into their pd1 lag3 trial. If I ever make it to MD Anderson I will keep you folks in mind even if it is just to say hello. A branch of my former coworkers are at the Woodlands there. Looking back I should have probably listened to them and gone to MD Anderson early on but oh well at least I'm still here and in the fight.
Artie
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- April 24, 2015 at 3:23 pm
Thank you so much Jackie. I started to do TIL at NIH in Bethesda last winter but my walking went out on me so I got kicked out before the first visit. But they said if I got better to call them back. I'm better again so they are still in the back of my mind. But first I'm going to Chicago on May 5th to see if I can get into their pd1 lag3 trial. If I ever make it to MD Anderson I will keep you folks in mind even if it is just to say hello. A branch of my former coworkers are at the Woodlands there. Looking back I should have probably listened to them and gone to MD Anderson early on but oh well at least I'm still here and in the fight.
Artie
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- July 1, 2015 at 4:26 pm
First post, I just would like to share information about PANRAF inhibitor
http://www.manchester.ac.uk/discover/news/article/?id=14420
The phase I trial of the drug – which is yet to be given a formal name and is currently known as BAL3833/CCT3833 – is sponsored by The Institute of Cancer Research (ICR) and The Royal Marsden NHS Foundation Trust
Love
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- July 1, 2015 at 4:26 pm
First post, I just would like to share information about PANRAF inhibitor
http://www.manchester.ac.uk/discover/news/article/?id=14420
The phase I trial of the drug – which is yet to be given a formal name and is currently known as BAL3833/CCT3833 – is sponsored by The Institute of Cancer Research (ICR) and The Royal Marsden NHS Foundation Trust
Love
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- July 1, 2015 at 4:26 pm
First post, I just would like to share information about PANRAF inhibitor
http://www.manchester.ac.uk/discover/news/article/?id=14420
The phase I trial of the drug – which is yet to be given a formal name and is currently known as BAL3833/CCT3833 – is sponsored by The Institute of Cancer Research (ICR) and The Royal Marsden NHS Foundation Trust
Love
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- April 24, 2015 at 3:18 pm
Thank you Jenny.
Artie
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- April 24, 2015 at 3:18 pm
Thank you Jenny.
Artie
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- April 24, 2015 at 3:18 pm
Thank you Jenny.
Artie
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- April 21, 2015 at 3:20 pm
Oh Artie….I feel for you.
I know you are feeling better and walking again and I know a lot of that has to do with the Keytruda and nutrition and your positive fighting attitude. So I am very glad they are letting you continue that for a bit. I really don't know the other treatments, so I cannot really help you with what to do.
But follow your gut and go with what feels like the best decision for you.
Big hug to you, Laurie
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- April 24, 2015 at 3:25 pm
Thank you Laurie. You have been an inspiration on your Keytruda. Unfortunately I gotta find something else so I'm hoping everything goes good in Chicago on May 5th for their pd1 lag3 trial.
Artie
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- April 24, 2015 at 3:25 pm
Thank you Laurie. You have been an inspiration on your Keytruda. Unfortunately I gotta find something else so I'm hoping everything goes good in Chicago on May 5th for their pd1 lag3 trial.
Artie
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- April 24, 2015 at 3:25 pm
Thank you Laurie. You have been an inspiration on your Keytruda. Unfortunately I gotta find something else so I'm hoping everything goes good in Chicago on May 5th for their pd1 lag3 trial.
Artie
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- April 21, 2015 at 3:20 pm
Oh Artie….I feel for you.
I know you are feeling better and walking again and I know a lot of that has to do with the Keytruda and nutrition and your positive fighting attitude. So I am very glad they are letting you continue that for a bit. I really don't know the other treatments, so I cannot really help you with what to do.
But follow your gut and go with what feels like the best decision for you.
Big hug to you, Laurie
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- April 21, 2015 at 3:20 pm
Oh Artie….I feel for you.
I know you are feeling better and walking again and I know a lot of that has to do with the Keytruda and nutrition and your positive fighting attitude. So I am very glad they are letting you continue that for a bit. I really don't know the other treatments, so I cannot really help you with what to do.
But follow your gut and go with what feels like the best decision for you.
Big hug to you, Laurie
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- April 21, 2015 at 4:37 pm
Artie,
I read your post as I'm waiting for my own scan results. I empathize with your fear and uncertainty. I know that my options are quite limited if PD-1 doesn't work for me (I've already done ipi and BRAF-MEK). I echo Celeste's post regarding TIL. As I've suggested in other posts, if PD-1 doesn't work for me, I absolutely would look at TIL and I would travel to MDA and Seattle–in addition to NIH–in case I couldn't satisfy NIH's criteria. I would also plan to travel with someone who has both the energy and ability to assist me in a setting that required travel. I'll need that person's strength. Speaking for myself, my (also older) parents might not be the best option in that scenario. I'm obviously not suggesting that TIL is a better option than anti-lag3 or ERK. Like you, I'd look at all 3. I'd also contact some of the melanoma "rock stars" (Wolchok, Ribas, Weber, Flaherty) to see if they had any suggestions. Who knows whether they know about some trial that hasn't been announced yet, but is around the corner. Many of them are gracious with their time and will respond to emails promptly. Best wishes as you work through these challenging decisions.
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- April 21, 2015 at 4:37 pm
Artie,
I read your post as I'm waiting for my own scan results. I empathize with your fear and uncertainty. I know that my options are quite limited if PD-1 doesn't work for me (I've already done ipi and BRAF-MEK). I echo Celeste's post regarding TIL. As I've suggested in other posts, if PD-1 doesn't work for me, I absolutely would look at TIL and I would travel to MDA and Seattle–in addition to NIH–in case I couldn't satisfy NIH's criteria. I would also plan to travel with someone who has both the energy and ability to assist me in a setting that required travel. I'll need that person's strength. Speaking for myself, my (also older) parents might not be the best option in that scenario. I'm obviously not suggesting that TIL is a better option than anti-lag3 or ERK. Like you, I'd look at all 3. I'd also contact some of the melanoma "rock stars" (Wolchok, Ribas, Weber, Flaherty) to see if they had any suggestions. Who knows whether they know about some trial that hasn't been announced yet, but is around the corner. Many of them are gracious with their time and will respond to emails promptly. Best wishes as you work through these challenging decisions.
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- April 24, 2015 at 3:29 pm
Thank you Mat. I hadn't thought of emailing folks like that. I know in the past when I did they or someone for them did respond but basically just said basically come see us so we can run some tests to find the best treatment for you. But it might be worth it again to see if they respond and what they say.
Artie
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- April 24, 2015 at 3:29 pm
Thank you Mat. I hadn't thought of emailing folks like that. I know in the past when I did they or someone for them did respond but basically just said basically come see us so we can run some tests to find the best treatment for you. But it might be worth it again to see if they respond and what they say.
Artie
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- April 24, 2015 at 3:29 pm
Thank you Mat. I hadn't thought of emailing folks like that. I know in the past when I did they or someone for them did respond but basically just said basically come see us so we can run some tests to find the best treatment for you. But it might be worth it again to see if they respond and what they say.
Artie
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- April 21, 2015 at 4:37 pm
Artie,
I read your post as I'm waiting for my own scan results. I empathize with your fear and uncertainty. I know that my options are quite limited if PD-1 doesn't work for me (I've already done ipi and BRAF-MEK). I echo Celeste's post regarding TIL. As I've suggested in other posts, if PD-1 doesn't work for me, I absolutely would look at TIL and I would travel to MDA and Seattle–in addition to NIH–in case I couldn't satisfy NIH's criteria. I would also plan to travel with someone who has both the energy and ability to assist me in a setting that required travel. I'll need that person's strength. Speaking for myself, my (also older) parents might not be the best option in that scenario. I'm obviously not suggesting that TIL is a better option than anti-lag3 or ERK. Like you, I'd look at all 3. I'd also contact some of the melanoma "rock stars" (Wolchok, Ribas, Weber, Flaherty) to see if they had any suggestions. Who knows whether they know about some trial that hasn't been announced yet, but is around the corner. Many of them are gracious with their time and will respond to emails promptly. Best wishes as you work through these challenging decisions.
-
- April 21, 2015 at 4:56 pm
Hey Artie – I don't post too often, but I definitely wanted to reach out to you. You've always been so kind and helpful whenever I have questions….I hope you know how much that's appreciated! I'm so sorry that your news wasn't better. Hopefully your next treatment will be "the one." You are in my prayers!
Ashley
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- April 24, 2015 at 3:31 pm
Thank you Ashley. I certainly need all the prayers I can get. Good to hear you like MD Anderson better. On May 5th I see a Chicago doc for his pd1 lag3 trial but TIL is also on my mind.
Artie
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- April 24, 2015 at 3:31 pm
Thank you Ashley. I certainly need all the prayers I can get. Good to hear you like MD Anderson better. On May 5th I see a Chicago doc for his pd1 lag3 trial but TIL is also on my mind.
Artie
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- April 24, 2015 at 3:31 pm
Thank you Ashley. I certainly need all the prayers I can get. Good to hear you like MD Anderson better. On May 5th I see a Chicago doc for his pd1 lag3 trial but TIL is also on my mind.
Artie
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- April 21, 2015 at 4:56 pm
Hey Artie – I don't post too often, but I definitely wanted to reach out to you. You've always been so kind and helpful whenever I have questions….I hope you know how much that's appreciated! I'm so sorry that your news wasn't better. Hopefully your next treatment will be "the one." You are in my prayers!
Ashley
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- April 21, 2015 at 4:56 pm
Hey Artie – I don't post too often, but I definitely wanted to reach out to you. You've always been so kind and helpful whenever I have questions….I hope you know how much that's appreciated! I'm so sorry that your news wasn't better. Hopefully your next treatment will be "the one." You are in my prayers!
Ashley
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- April 21, 2015 at 7:40 pm
Dear Artie,
so sorry to hear that the scan results are not as good as hoped.
I was wondering, since you have been feeling so much better: is it not possible that the new stuff growing started just after your last scan, and that it may actually be shrinking in this new scan?? It just seems so odd that new stuff should appear when you are feeling better… Just a thought.
Anyway, whatever you decide treatment-wise, I hope with all my heart that it will be successful. I just wanted to let you know that I am sending you many positive thoughts and keeping you in my prayers!
Again, all the best to you,
Susannah
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- April 21, 2015 at 7:40 pm
Dear Artie,
so sorry to hear that the scan results are not as good as hoped.
I was wondering, since you have been feeling so much better: is it not possible that the new stuff growing started just after your last scan, and that it may actually be shrinking in this new scan?? It just seems so odd that new stuff should appear when you are feeling better… Just a thought.
Anyway, whatever you decide treatment-wise, I hope with all my heart that it will be successful. I just wanted to let you know that I am sending you many positive thoughts and keeping you in my prayers!
Again, all the best to you,
Susannah
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- April 24, 2015 at 3:35 pm
Thank you Susannah. I certainly need all the prayers I can get. I'm actually skeptical that the new tumor is even on my kidney. Like someone said here interpretting a PET scan is like an art. I remember in the past there being a tumor in the bone behind that kidney. So when they overlay the CT on the PET that is actually how they see what they think is a tumor on the kidney. But it was over 10 minutes from the time the CT was done to when the PET got to that area so I could have easily moved a little thus easily making a mm difference. But what really concerns me is the worsening of the spine in the T10 and T12 vertebrae. The T10 is what almost paralyzed me last year. I'm fortunately not having any of those symptoms yet but it certainly has me scared.
Artie
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- April 24, 2015 at 3:35 pm
Thank you Susannah. I certainly need all the prayers I can get. I'm actually skeptical that the new tumor is even on my kidney. Like someone said here interpretting a PET scan is like an art. I remember in the past there being a tumor in the bone behind that kidney. So when they overlay the CT on the PET that is actually how they see what they think is a tumor on the kidney. But it was over 10 minutes from the time the CT was done to when the PET got to that area so I could have easily moved a little thus easily making a mm difference. But what really concerns me is the worsening of the spine in the T10 and T12 vertebrae. The T10 is what almost paralyzed me last year. I'm fortunately not having any of those symptoms yet but it certainly has me scared.
Artie
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- April 24, 2015 at 3:35 pm
Thank you Susannah. I certainly need all the prayers I can get. I'm actually skeptical that the new tumor is even on my kidney. Like someone said here interpretting a PET scan is like an art. I remember in the past there being a tumor in the bone behind that kidney. So when they overlay the CT on the PET that is actually how they see what they think is a tumor on the kidney. But it was over 10 minutes from the time the CT was done to when the PET got to that area so I could have easily moved a little thus easily making a mm difference. But what really concerns me is the worsening of the spine in the T10 and T12 vertebrae. The T10 is what almost paralyzed me last year. I'm fortunately not having any of those symptoms yet but it certainly has me scared.
Artie
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- April 21, 2015 at 7:40 pm
Dear Artie,
so sorry to hear that the scan results are not as good as hoped.
I was wondering, since you have been feeling so much better: is it not possible that the new stuff growing started just after your last scan, and that it may actually be shrinking in this new scan?? It just seems so odd that new stuff should appear when you are feeling better… Just a thought.
Anyway, whatever you decide treatment-wise, I hope with all my heart that it will be successful. I just wanted to let you know that I am sending you many positive thoughts and keeping you in my prayers!
Again, all the best to you,
Susannah
-
- April 21, 2015 at 8:54 pm
Sorry to hear the results are a mixed bag, Artie. Sounds like there are still a few more bullets in the chamber to try. I have only heard limited things about the Huntsman virus research but everything sounded positive – do you know why they excluded bone metastases from the trial?
Hang in there. I'm praying for you.
Kevin
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- April 24, 2015 at 3:41 pm
I didn't call them to find out Kevin. But in my own thinking if we have a bunch of cancer cells in the bone I know from various reports and even over an inch height loss the cancer cells basically can cause parts of the bone to disintegrate. Thus if something were to quickly like within a week or so remove those cancer cells we are left with a weakened bone that may collapse. I know not causing the bones to collapse has been a big concern of my radiation doc whenever he zaps my spine. Thus I imagine these docs with their new med just don't want to deal with such a tricky situation. Now they may have a totally different reason but that's just my thoughts on it. That's also why I take xgeva to strengthen those bones. Another med for it is zometa but I had a mildly bad experience with it after just 1 dose. But xgeva has been fine for me.
Artie
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- April 24, 2015 at 3:41 pm
I didn't call them to find out Kevin. But in my own thinking if we have a bunch of cancer cells in the bone I know from various reports and even over an inch height loss the cancer cells basically can cause parts of the bone to disintegrate. Thus if something were to quickly like within a week or so remove those cancer cells we are left with a weakened bone that may collapse. I know not causing the bones to collapse has been a big concern of my radiation doc whenever he zaps my spine. Thus I imagine these docs with their new med just don't want to deal with such a tricky situation. Now they may have a totally different reason but that's just my thoughts on it. That's also why I take xgeva to strengthen those bones. Another med for it is zometa but I had a mildly bad experience with it after just 1 dose. But xgeva has been fine for me.
Artie
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- April 24, 2015 at 3:41 pm
I didn't call them to find out Kevin. But in my own thinking if we have a bunch of cancer cells in the bone I know from various reports and even over an inch height loss the cancer cells basically can cause parts of the bone to disintegrate. Thus if something were to quickly like within a week or so remove those cancer cells we are left with a weakened bone that may collapse. I know not causing the bones to collapse has been a big concern of my radiation doc whenever he zaps my spine. Thus I imagine these docs with their new med just don't want to deal with such a tricky situation. Now they may have a totally different reason but that's just my thoughts on it. That's also why I take xgeva to strengthen those bones. Another med for it is zometa but I had a mildly bad experience with it after just 1 dose. But xgeva has been fine for me.
Artie
-
- April 21, 2015 at 8:54 pm
Sorry to hear the results are a mixed bag, Artie. Sounds like there are still a few more bullets in the chamber to try. I have only heard limited things about the Huntsman virus research but everything sounded positive – do you know why they excluded bone metastases from the trial?
Hang in there. I'm praying for you.
Kevin
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- April 21, 2015 at 8:54 pm
Sorry to hear the results are a mixed bag, Artie. Sounds like there are still a few more bullets in the chamber to try. I have only heard limited things about the Huntsman virus research but everything sounded positive – do you know why they excluded bone metastases from the trial?
Hang in there. I'm praying for you.
Kevin
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- April 22, 2015 at 2:50 pm
Hi Artie
Thanks for all the information about your options! You really are a trail blazer and we are all hoping and praying for you. I don't know a fraction of what you know, but I think the virus treatment sounds promising that someone in here posted about recently. I'm sure that when you discuss with your doctors you will find the right plan that will work in conjunction with keytruda.
Anne-Louise
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- April 24, 2015 at 3:43 pm
Thank you Anne-Louise. I really need lots of prayers that's for sure. I'm hoping things on May 5th in Chicago turn out good. I'm hoping to get into their pd1 lag3 trial. We shall see.
Artie
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- April 24, 2015 at 3:43 pm
Thank you Anne-Louise. I really need lots of prayers that's for sure. I'm hoping things on May 5th in Chicago turn out good. I'm hoping to get into their pd1 lag3 trial. We shall see.
Artie
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- April 24, 2015 at 3:43 pm
Thank you Anne-Louise. I really need lots of prayers that's for sure. I'm hoping things on May 5th in Chicago turn out good. I'm hoping to get into their pd1 lag3 trial. We shall see.
Artie
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- April 22, 2015 at 2:50 pm
Hi Artie
Thanks for all the information about your options! You really are a trail blazer and we are all hoping and praying for you. I don't know a fraction of what you know, but I think the virus treatment sounds promising that someone in here posted about recently. I'm sure that when you discuss with your doctors you will find the right plan that will work in conjunction with keytruda.
Anne-Louise
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- April 22, 2015 at 2:50 pm
Hi Artie
Thanks for all the information about your options! You really are a trail blazer and we are all hoping and praying for you. I don't know a fraction of what you know, but I think the virus treatment sounds promising that someone in here posted about recently. I'm sure that when you discuss with your doctors you will find the right plan that will work in conjunction with keytruda.
Anne-Louise
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- April 24, 2015 at 7:06 am
Sorry to hear about your lack of progress.
You seem to have hit the wall with most of the current available mainstream options and time is of the essence.
If was you I would start to look at some of the off label drugs for melanoma that are cheap and easy and have some clinical research behind them.
Start with cimiditene trade name tagamet. This is cheap and non prescription and no real side effects. There is also celebrex, metaformin and a few others that i cant remember.
I would also look at alternative options
Start doing some infra red saunas or buy a near infrared light set up..
You could also consider doing whole body hyperthermia to stimulate immune system.
If you could get rigvir this is also a good option as it is a natural virus therapy for melanoma.
Good luck. You are still young and you shouldnt give up just because the treatments you hav tried so far havent worked. There are many many treatments that still can turn things around for you.
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- April 24, 2015 at 4:00 pm
Thank you anonymous. I remember early on reading a book about alternative treatments my now former coworkers got for me. I'm not sure where that book got to now. Must be around here somewhere. I remember reading about that rigvir and also some light treatment like you mention. Since most of my stuff is in bone I'm not sure a light treatment would be able to get that deep. Although there is a standard therapy that uses light but even running the light tube inside the person to the tumor only penetrates about 1 cm. Hadn't heard of tagamet.
On May 5th I see a doc in Chicago to try to get into his pd1 lag3 trial. If not TIL at NIH might still be an option. The main thing that is scaring me is my spine getting worse. Last year I was almost paralyzed because of the t10 and it is getting worse again. Fortunately I don't have any of those symptoms yet but it has got me worried. Everything else I believe I can beat but not if my spine gets me. So we shall see.
Artie
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- April 24, 2015 at 4:00 pm
Thank you anonymous. I remember early on reading a book about alternative treatments my now former coworkers got for me. I'm not sure where that book got to now. Must be around here somewhere. I remember reading about that rigvir and also some light treatment like you mention. Since most of my stuff is in bone I'm not sure a light treatment would be able to get that deep. Although there is a standard therapy that uses light but even running the light tube inside the person to the tumor only penetrates about 1 cm. Hadn't heard of tagamet.
On May 5th I see a doc in Chicago to try to get into his pd1 lag3 trial. If not TIL at NIH might still be an option. The main thing that is scaring me is my spine getting worse. Last year I was almost paralyzed because of the t10 and it is getting worse again. Fortunately I don't have any of those symptoms yet but it has got me worried. Everything else I believe I can beat but not if my spine gets me. So we shall see.
Artie
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- April 24, 2015 at 4:00 pm
Thank you anonymous. I remember early on reading a book about alternative treatments my now former coworkers got for me. I'm not sure where that book got to now. Must be around here somewhere. I remember reading about that rigvir and also some light treatment like you mention. Since most of my stuff is in bone I'm not sure a light treatment would be able to get that deep. Although there is a standard therapy that uses light but even running the light tube inside the person to the tumor only penetrates about 1 cm. Hadn't heard of tagamet.
On May 5th I see a doc in Chicago to try to get into his pd1 lag3 trial. If not TIL at NIH might still be an option. The main thing that is scaring me is my spine getting worse. Last year I was almost paralyzed because of the t10 and it is getting worse again. Fortunately I don't have any of those symptoms yet but it has got me worried. Everything else I believe I can beat but not if my spine gets me. So we shall see.
Artie
-
- April 24, 2015 at 7:06 am
Sorry to hear about your lack of progress.
You seem to have hit the wall with most of the current available mainstream options and time is of the essence.
If was you I would start to look at some of the off label drugs for melanoma that are cheap and easy and have some clinical research behind them.
Start with cimiditene trade name tagamet. This is cheap and non prescription and no real side effects. There is also celebrex, metaformin and a few others that i cant remember.
I would also look at alternative options
Start doing some infra red saunas or buy a near infrared light set up..
You could also consider doing whole body hyperthermia to stimulate immune system.
If you could get rigvir this is also a good option as it is a natural virus therapy for melanoma.
Good luck. You are still young and you shouldnt give up just because the treatments you hav tried so far havent worked. There are many many treatments that still can turn things around for you.
-
- April 24, 2015 at 7:06 am
Sorry to hear about your lack of progress.
You seem to have hit the wall with most of the current available mainstream options and time is of the essence.
If was you I would start to look at some of the off label drugs for melanoma that are cheap and easy and have some clinical research behind them.
Start with cimiditene trade name tagamet. This is cheap and non prescription and no real side effects. There is also celebrex, metaformin and a few others that i cant remember.
I would also look at alternative options
Start doing some infra red saunas or buy a near infrared light set up..
You could also consider doing whole body hyperthermia to stimulate immune system.
If you could get rigvir this is also a good option as it is a natural virus therapy for melanoma.
Good luck. You are still young and you shouldnt give up just because the treatments you hav tried so far havent worked. There are many many treatments that still can turn things around for you.
-
- April 25, 2015 at 1:30 am
Artie, I'm very sorry to hear the latest from you. It's never easy to fail a treatment that hold so much hope! But there's still options out there, we just have to find the ones that are the best for us. We are in the same place, failed Keytruda after a 6 months run and we are looking to get in a TILS trial in Bethesda. My husband doesn't have bone mets, but he has too many tumors to count in his abdomen, peritoneal area, and a huge one in the liver. He also has a brain met, it was 19mm before SRS in September, now it's 14mm. The lady that processed the application for trial said she doesn't know how big a brain tumor can be in order to be accepted, even a shrinking one, but on Monday she'll let us know one way or the other.
We are also trying to get an appointment to MSK in NY, to see if he can qualify for an LAG trial, or antiPDL1, or anything else, really, that we may not be aware. I will let you know what we find, hopefully there is something out there. There is always hope, and nobody is going to take that away!
you are in my mind, I'm sending you lots of positive, healing vibes!
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- April 25, 2015 at 1:30 am
Artie, I'm very sorry to hear the latest from you. It's never easy to fail a treatment that hold so much hope! But there's still options out there, we just have to find the ones that are the best for us. We are in the same place, failed Keytruda after a 6 months run and we are looking to get in a TILS trial in Bethesda. My husband doesn't have bone mets, but he has too many tumors to count in his abdomen, peritoneal area, and a huge one in the liver. He also has a brain met, it was 19mm before SRS in September, now it's 14mm. The lady that processed the application for trial said she doesn't know how big a brain tumor can be in order to be accepted, even a shrinking one, but on Monday she'll let us know one way or the other.
We are also trying to get an appointment to MSK in NY, to see if he can qualify for an LAG trial, or antiPDL1, or anything else, really, that we may not be aware. I will let you know what we find, hopefully there is something out there. There is always hope, and nobody is going to take that away!
you are in my mind, I'm sending you lots of positive, healing vibes!
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- April 25, 2015 at 12:37 pm
Thank you Nadia. Please let me know what you find. Good luck to your husband.
Artie
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- April 25, 2015 at 12:37 pm
Thank you Nadia. Please let me know what you find. Good luck to your husband.
Artie
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- May 5, 2015 at 12:53 am
Sorry to hear about everything. It's a long road and you keep the faith. Mine has been challenged a number of times with my stage 4 and disasterous side effects and disappointments. I'm just new to Keytruda.
I'm really biased towards MD Anderson and with good reason. Dr. Hwu and Carol Lacey have been phenomenal, and so is everyone else from the moment you walk in the door.
IF you can muster the energy, get yourself in to see him. If you need help with an appointment, let me know. I've built a nice friendship with those 2 and communicate regularly between appointments.
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- May 5, 2015 at 12:53 am
Sorry to hear about everything. It's a long road and you keep the faith. Mine has been challenged a number of times with my stage 4 and disasterous side effects and disappointments. I'm just new to Keytruda.
I'm really biased towards MD Anderson and with good reason. Dr. Hwu and Carol Lacey have been phenomenal, and so is everyone else from the moment you walk in the door.
IF you can muster the energy, get yourself in to see him. If you need help with an appointment, let me know. I've built a nice friendship with those 2 and communicate regularly between appointments.
-
- May 5, 2015 at 12:53 am
Sorry to hear about everything. It's a long road and you keep the faith. Mine has been challenged a number of times with my stage 4 and disasterous side effects and disappointments. I'm just new to Keytruda.
I'm really biased towards MD Anderson and with good reason. Dr. Hwu and Carol Lacey have been phenomenal, and so is everyone else from the moment you walk in the door.
IF you can muster the energy, get yourself in to see him. If you need help with an appointment, let me know. I've built a nice friendship with those 2 and communicate regularly between appointments.
-
- April 25, 2015 at 12:37 pm
Thank you Nadia. Please let me know what you find. Good luck to your husband.
Artie
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- April 25, 2015 at 1:30 am
Artie, I'm very sorry to hear the latest from you. It's never easy to fail a treatment that hold so much hope! But there's still options out there, we just have to find the ones that are the best for us. We are in the same place, failed Keytruda after a 6 months run and we are looking to get in a TILS trial in Bethesda. My husband doesn't have bone mets, but he has too many tumors to count in his abdomen, peritoneal area, and a huge one in the liver. He also has a brain met, it was 19mm before SRS in September, now it's 14mm. The lady that processed the application for trial said she doesn't know how big a brain tumor can be in order to be accepted, even a shrinking one, but on Monday she'll let us know one way or the other.
We are also trying to get an appointment to MSK in NY, to see if he can qualify for an LAG trial, or antiPDL1, or anything else, really, that we may not be aware. I will let you know what we find, hopefully there is something out there. There is always hope, and nobody is going to take that away!
you are in my mind, I'm sending you lots of positive, healing vibes!
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