› Forums › General Melanoma Community › Baffled by Dr and first scan after IPI – thoughts?
- This topic has 60 replies, 9 voices, and was last updated 10 years, 2 months ago by
LynnLuc.
- Post
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- February 3, 2014 at 10:41 pm
My Dr is a melanoma specialist. I just completed last IPI dose 2 weeks ago today. Before that was zelboraf which shrank nothing and before that with different Dr was pallative radiation to T10 and a few other vertebrae.
They now see everything has increased plus some more spots. This is the first time the radiated T10 spot has increased. The biggest was the left scapula tumor by almost 50% (9.1 to 13) (Probably why I had lots of pain I was telling them about for over 6 weeks but the pain has lessened a lot now). The T10 increased but the Dr didn't know how much since the radiologist didn't include numbers for it. The T10 has now collapsed 50% causing my height loss but not much additional pain since last scan. No one ever reported how much it had collapsed before and no one ever gave me an answer why I lost height way back in August so now I know why I just dunno if this is more collapse or what.
The Dr originally said they don't put much "weight" on this first scan. Now that they have the scan he wants me on tafinlar/mekinist combo immediately. Plus xgeva immediately for bones but that is in the same family as zometa which I took 1 dose last July and was starting to get early stage of the jaw necrosis so I quit and now my jaw is fine again.
So I'm baffled. I asked about clinical trials and he said the only thing he believes I should get into is a PDL1 or PD1 but said there are none available. Despite when I was on ipi they said I could do PD1 if I increased on IPI but apparently not. They are not willing to help find trials.
The only good news is all the mel is still in my bones. Just lots and lots of bones with the T10 and left scapula as the worst.
I'm struggling with this new clinical trial site. It is all way over my head of which trial I should try to get into.
Sorry I'm babbling but I'm at my wits end today after hearing this and very depressed and don't know what to do other than do the med plan the Dr said which I have no faith in it working especially since zelboraf never worked. Only other idea I have is trying to somehow relocate to MDA and see if they have a miracle for me but I guess they deal with the same trials issues too and nothing else. I dunno what to do. Sorry I'm just baffled and rambling.
ArtieV
- Replies
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- February 4, 2014 at 2:05 am
Hi, I just wanted to let you know that Katherine over on the Melanoma International site could probably help you look for any other trials that you may qualify for. She seems to be pretty easy to reach. Here is the link. Call the number and post on the board. She will answer you. Sorry for what you are dealing with and Good Luck in finding a trial. The combo that your doc. Wants to put you on sounds like it's pretty good though. You can read a lot about it if you put it in the search area here on this forum. http://melanomainternational.org/web-resources/clinical-trials/#.UvBJxtu9KSM
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- February 4, 2014 at 2:05 am
Hi, I just wanted to let you know that Katherine over on the Melanoma International site could probably help you look for any other trials that you may qualify for. She seems to be pretty easy to reach. Here is the link. Call the number and post on the board. She will answer you. Sorry for what you are dealing with and Good Luck in finding a trial. The combo that your doc. Wants to put you on sounds like it's pretty good though. You can read a lot about it if you put it in the search area here on this forum. http://melanomainternational.org/web-resources/clinical-trials/#.UvBJxtu9KSM
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- February 4, 2014 at 2:05 am
Hi, I just wanted to let you know that Katherine over on the Melanoma International site could probably help you look for any other trials that you may qualify for. She seems to be pretty easy to reach. Here is the link. Call the number and post on the board. She will answer you. Sorry for what you are dealing with and Good Luck in finding a trial. The combo that your doc. Wants to put you on sounds like it's pretty good though. You can read a lot about it if you put it in the search area here on this forum. http://melanomainternational.org/web-resources/clinical-trials/#.UvBJxtu9KSM
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- February 4, 2014 at 2:13 am
I am so sorry, Artie. You have had to deal with so much in such a short amount of time!!! I am sure you could get anti-PD1 once it is on the market, but that doesn't help you at the moment. Ipi is notorious for showing increased tumor size after treatment and then tumors gradually recede or even disappear… (I have several studies addressing that on my blog…just put in ipi or yervoy in the top left search bar if interested.) So, I am still holding out for that. However, that is cold comfort when you are looking at scan results showing growth at the moment. When are your docs planning to rescan?
According to their site…Moffitt in Tampa is still recruiting in the trial I was in. I know it had an arm specifically for folks that failed ipi. I am not sure THAT particular one is still open, if you are interested…I would call. In fact…you can email Weber. It's amazing, but I've never known that man to fail to answer an email and he would tell you straight up if he had anything to offer you. Additionally, Moffitt is currently enrolling patients in an anti-PDL1 Phase 1 trial, Clinical Trial #17148. The drug is: MED14736. It seems this trial is also open at Memorial Sloan Kettering and in Detroit.
Despite your lack of success with zel, I think that the newly approved BRAF/MEK combo could be an option for you. It is no longer a trial, but something your docs could prescribe. I would certainly ask about that.
I don't know if you would want to try IL2 or TIL, but it seems that those might be possibilities. (Last news letter I got said Moffitt was expanding its research in that area.)
There are ADC (I have articles and info about that on my blog as well) trials in a couple places. I don't know what they are demonstrating with predominantly bone mets like yours…but seems like it would be worth a call. I know there is a trial in Nashville at Sarah Cannon.
There is a Phase 1 study of another anti-PD1 by Amplimmune, Clinical Trial # NCT02013804. It looks like you would meet the criteria. You have to be 4 weeks post BRAF or immunotherapy (ipi in your case). Recruiting now in Nashville at Sarah Cannon.
Don't know how much this helps. But, don't lose hope yet. I think there are still options out there for you, though I know it is tough to be the patient and researcher and personal cheerleader all at once. Hang in there! Celeste
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- February 4, 2014 at 3:53 am
Thank you. I have emailed Dr Weber and will look into the other things tomorrow. I am glad there are folks that take the time to help me. Thanks.
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- February 4, 2014 at 3:53 am
Thank you. I have emailed Dr Weber and will look into the other things tomorrow. I am glad there are folks that take the time to help me. Thanks.
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- February 4, 2014 at 3:53 am
Thank you. I have emailed Dr Weber and will look into the other things tomorrow. I am glad there are folks that take the time to help me. Thanks.
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- February 4, 2014 at 8:39 pm
Thank you again. Sarah Cannon's PD1 trial NCT0213804 they said is open and I should hear from their nurses within 24 hours. I just hope that company's PD1 is as good as nivo.
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- February 4, 2014 at 8:39 pm
Thank you again. Sarah Cannon's PD1 trial NCT0213804 they said is open and I should hear from their nurses within 24 hours. I just hope that company's PD1 is as good as nivo.
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- February 5, 2014 at 2:40 am
That's great!!! I certainly hope so, too. I know that the Curetech version was a complete bust. But…on the hopefull side…BMS and Merck anti-PD1 products are doing well and hopefully Amplimmune learned from all of their examples!! Fingers crossed for whatever you decide! C
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- February 5, 2014 at 2:40 am
That's great!!! I certainly hope so, too. I know that the Curetech version was a complete bust. But…on the hopefull side…BMS and Merck anti-PD1 products are doing well and hopefully Amplimmune learned from all of their examples!! Fingers crossed for whatever you decide! C
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- February 5, 2014 at 2:40 am
That's great!!! I certainly hope so, too. I know that the Curetech version was a complete bust. But…on the hopefull side…BMS and Merck anti-PD1 products are doing well and hopefully Amplimmune learned from all of their examples!! Fingers crossed for whatever you decide! C
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- February 4, 2014 at 8:39 pm
Thank you again. Sarah Cannon's PD1 trial NCT0213804 they said is open and I should hear from their nurses within 24 hours. I just hope that company's PD1 is as good as nivo.
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- February 4, 2014 at 2:13 am
I am so sorry, Artie. You have had to deal with so much in such a short amount of time!!! I am sure you could get anti-PD1 once it is on the market, but that doesn't help you at the moment. Ipi is notorious for showing increased tumor size after treatment and then tumors gradually recede or even disappear… (I have several studies addressing that on my blog…just put in ipi or yervoy in the top left search bar if interested.) So, I am still holding out for that. However, that is cold comfort when you are looking at scan results showing growth at the moment. When are your docs planning to rescan?
According to their site…Moffitt in Tampa is still recruiting in the trial I was in. I know it had an arm specifically for folks that failed ipi. I am not sure THAT particular one is still open, if you are interested…I would call. In fact…you can email Weber. It's amazing, but I've never known that man to fail to answer an email and he would tell you straight up if he had anything to offer you. Additionally, Moffitt is currently enrolling patients in an anti-PDL1 Phase 1 trial, Clinical Trial #17148. The drug is: MED14736. It seems this trial is also open at Memorial Sloan Kettering and in Detroit.
Despite your lack of success with zel, I think that the newly approved BRAF/MEK combo could be an option for you. It is no longer a trial, but something your docs could prescribe. I would certainly ask about that.
I don't know if you would want to try IL2 or TIL, but it seems that those might be possibilities. (Last news letter I got said Moffitt was expanding its research in that area.)
There are ADC (I have articles and info about that on my blog as well) trials in a couple places. I don't know what they are demonstrating with predominantly bone mets like yours…but seems like it would be worth a call. I know there is a trial in Nashville at Sarah Cannon.
There is a Phase 1 study of another anti-PD1 by Amplimmune, Clinical Trial # NCT02013804. It looks like you would meet the criteria. You have to be 4 weeks post BRAF or immunotherapy (ipi in your case). Recruiting now in Nashville at Sarah Cannon.
Don't know how much this helps. But, don't lose hope yet. I think there are still options out there for you, though I know it is tough to be the patient and researcher and personal cheerleader all at once. Hang in there! Celeste
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- February 4, 2014 at 2:13 am
I am so sorry, Artie. You have had to deal with so much in such a short amount of time!!! I am sure you could get anti-PD1 once it is on the market, but that doesn't help you at the moment. Ipi is notorious for showing increased tumor size after treatment and then tumors gradually recede or even disappear… (I have several studies addressing that on my blog…just put in ipi or yervoy in the top left search bar if interested.) So, I am still holding out for that. However, that is cold comfort when you are looking at scan results showing growth at the moment. When are your docs planning to rescan?
According to their site…Moffitt in Tampa is still recruiting in the trial I was in. I know it had an arm specifically for folks that failed ipi. I am not sure THAT particular one is still open, if you are interested…I would call. In fact…you can email Weber. It's amazing, but I've never known that man to fail to answer an email and he would tell you straight up if he had anything to offer you. Additionally, Moffitt is currently enrolling patients in an anti-PDL1 Phase 1 trial, Clinical Trial #17148. The drug is: MED14736. It seems this trial is also open at Memorial Sloan Kettering and in Detroit.
Despite your lack of success with zel, I think that the newly approved BRAF/MEK combo could be an option for you. It is no longer a trial, but something your docs could prescribe. I would certainly ask about that.
I don't know if you would want to try IL2 or TIL, but it seems that those might be possibilities. (Last news letter I got said Moffitt was expanding its research in that area.)
There are ADC (I have articles and info about that on my blog as well) trials in a couple places. I don't know what they are demonstrating with predominantly bone mets like yours…but seems like it would be worth a call. I know there is a trial in Nashville at Sarah Cannon.
There is a Phase 1 study of another anti-PD1 by Amplimmune, Clinical Trial # NCT02013804. It looks like you would meet the criteria. You have to be 4 weeks post BRAF or immunotherapy (ipi in your case). Recruiting now in Nashville at Sarah Cannon.
Don't know how much this helps. But, don't lose hope yet. I think there are still options out there for you, though I know it is tough to be the patient and researcher and personal cheerleader all at once. Hang in there! Celeste
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- February 4, 2014 at 4:05 am
Hi, Arthur. I'm so sorry that you are having such a hard time finding an effective treatment. You really have been through the wars, haven't you?
It is difficult to know how to advise you because most (or maybe all) of your mets are in the bone. I haven't seen anything published specifically about the effect of these various melanoma treatments on bone mets. Certainly, many patients with bone mets have been helped, but I'm not sure which of them had mets IN the bone and which ones had mets ON the bone. As you know, there is very little blood circulating in bone tissue and that might effect the "bioavailability" of melanoma treatments. It's the bone thing that throws me.
What I would do if I were you is call Dr. Uma Rao at the University of Pennsylvania Medical Center and Dr. Steve Rosenberg at NIH and ask their advice. Dr. Rao is an MD but not a clinician; she is a researcher. She is the Director of the Bone, Soft Tissue, and Melanoma Center of Excellence at UPMC. Her contact information is here: http://path.upmc.edu/personnel/Faculty/raou.htm
Dr. Rosenberg invented the "tumor infiltrating lymphocyte (TIL)" technique for treating melanoma. The TIL technique depends on repopulating the bone marrow with anti-melanoma T-cells so he probably knows a lot about bones and melanoma, too. His contact information is here: http://ccr.cancer.gov/staff/staff.asp?profileid=5757
I suggest that you call and email both of them and ask which melanoma treatments would be best for bone mets and if there are any melanoma specialty centers that have had good results with bone mets. In the meanwhile, I, too suggest you try the Tafinlar + Mekinist combo as soon as possible. That does seem to be the best option we have for a quick response.
Let us know what you find out from the "orthopedic oncology" docs (I didn't even know there was such a specialty until today!).
Keep fighting! Dont' take "No" for an answer!
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- February 4, 2014 at 8:13 pm
Thank you. I've called left message and emailed Dr Rao.
I also called Dr Rosenberg and talked to his nurse but she says they don't treat melanoma in the bones. So I emaled as well.
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- February 4, 2014 at 8:13 pm
Thank you. I've called left message and emailed Dr Rao.
I also called Dr Rosenberg and talked to his nurse but she says they don't treat melanoma in the bones. So I emaled as well.
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- February 4, 2014 at 8:13 pm
Thank you. I've called left message and emailed Dr Rao.
I also called Dr Rosenberg and talked to his nurse but she says they don't treat melanoma in the bones. So I emaled as well.
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- February 4, 2014 at 8:42 pm
LOL!! That's exactly right! Don't take "No" for an answer. And if Dr. Rosenberg does say no, then ask him who does know a lot about melanoma in bones. In my experience, if you can make every phone call result in a little step forward, you will reach your goal in the end. You're doing great. Keep up the good work.
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- February 4, 2014 at 8:42 pm
LOL!! That's exactly right! Don't take "No" for an answer. And if Dr. Rosenberg does say no, then ask him who does know a lot about melanoma in bones. In my experience, if you can make every phone call result in a little step forward, you will reach your goal in the end. You're doing great. Keep up the good work.
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- February 4, 2014 at 8:42 pm
LOL!! That's exactly right! Don't take "No" for an answer. And if Dr. Rosenberg does say no, then ask him who does know a lot about melanoma in bones. In my experience, if you can make every phone call result in a little step forward, you will reach your goal in the end. You're doing great. Keep up the good work.
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- February 4, 2014 at 4:05 am
Hi, Arthur. I'm so sorry that you are having such a hard time finding an effective treatment. You really have been through the wars, haven't you?
It is difficult to know how to advise you because most (or maybe all) of your mets are in the bone. I haven't seen anything published specifically about the effect of these various melanoma treatments on bone mets. Certainly, many patients with bone mets have been helped, but I'm not sure which of them had mets IN the bone and which ones had mets ON the bone. As you know, there is very little blood circulating in bone tissue and that might effect the "bioavailability" of melanoma treatments. It's the bone thing that throws me.
What I would do if I were you is call Dr. Uma Rao at the University of Pennsylvania Medical Center and Dr. Steve Rosenberg at NIH and ask their advice. Dr. Rao is an MD but not a clinician; she is a researcher. She is the Director of the Bone, Soft Tissue, and Melanoma Center of Excellence at UPMC. Her contact information is here: http://path.upmc.edu/personnel/Faculty/raou.htm
Dr. Rosenberg invented the "tumor infiltrating lymphocyte (TIL)" technique for treating melanoma. The TIL technique depends on repopulating the bone marrow with anti-melanoma T-cells so he probably knows a lot about bones and melanoma, too. His contact information is here: http://ccr.cancer.gov/staff/staff.asp?profileid=5757
I suggest that you call and email both of them and ask which melanoma treatments would be best for bone mets and if there are any melanoma specialty centers that have had good results with bone mets. In the meanwhile, I, too suggest you try the Tafinlar + Mekinist combo as soon as possible. That does seem to be the best option we have for a quick response.
Let us know what you find out from the "orthopedic oncology" docs (I didn't even know there was such a specialty until today!).
Keep fighting! Dont' take "No" for an answer!
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- February 4, 2014 at 4:05 am
Hi, Arthur. I'm so sorry that you are having such a hard time finding an effective treatment. You really have been through the wars, haven't you?
It is difficult to know how to advise you because most (or maybe all) of your mets are in the bone. I haven't seen anything published specifically about the effect of these various melanoma treatments on bone mets. Certainly, many patients with bone mets have been helped, but I'm not sure which of them had mets IN the bone and which ones had mets ON the bone. As you know, there is very little blood circulating in bone tissue and that might effect the "bioavailability" of melanoma treatments. It's the bone thing that throws me.
What I would do if I were you is call Dr. Uma Rao at the University of Pennsylvania Medical Center and Dr. Steve Rosenberg at NIH and ask their advice. Dr. Rao is an MD but not a clinician; she is a researcher. She is the Director of the Bone, Soft Tissue, and Melanoma Center of Excellence at UPMC. Her contact information is here: http://path.upmc.edu/personnel/Faculty/raou.htm
Dr. Rosenberg invented the "tumor infiltrating lymphocyte (TIL)" technique for treating melanoma. The TIL technique depends on repopulating the bone marrow with anti-melanoma T-cells so he probably knows a lot about bones and melanoma, too. His contact information is here: http://ccr.cancer.gov/staff/staff.asp?profileid=5757
I suggest that you call and email both of them and ask which melanoma treatments would be best for bone mets and if there are any melanoma specialty centers that have had good results with bone mets. In the meanwhile, I, too suggest you try the Tafinlar + Mekinist combo as soon as possible. That does seem to be the best option we have for a quick response.
Let us know what you find out from the "orthopedic oncology" docs (I didn't even know there was such a specialty until today!).
Keep fighting! Dont' take "No" for an answer!
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- February 4, 2014 at 6:34 am
Arthur – It sucks being in this position. My husband was on zelboraf (he was responsive temporarily) and also just finished ipi in December. We were unable to get onto the PD1 trial because of brain mets and other things that started appearing and that is why we went with ipi. Anyway, now as you know it is impossible to find a pd1 trial that is still recriuiting. We just started a new trial at The Angeles Clinic with Dr. Hamid in Los Angeles with a drug called MSB0010445 combined with stereotactic radiosurgery. On the clinicaltrial.gov website it says it's only available in Massachusetts but like are said we are doing it in Los Angeles. Dr. Hamid seems pretty fired up about it as well as our neurosurgeon in San Diego is. Of course if PD1 comes open for compassionate use we would go that route but it may be an option you want to look into.
Blessings,
Holly
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- February 4, 2014 at 6:34 am
Arthur – It sucks being in this position. My husband was on zelboraf (he was responsive temporarily) and also just finished ipi in December. We were unable to get onto the PD1 trial because of brain mets and other things that started appearing and that is why we went with ipi. Anyway, now as you know it is impossible to find a pd1 trial that is still recriuiting. We just started a new trial at The Angeles Clinic with Dr. Hamid in Los Angeles with a drug called MSB0010445 combined with stereotactic radiosurgery. On the clinicaltrial.gov website it says it's only available in Massachusetts but like are said we are doing it in Los Angeles. Dr. Hamid seems pretty fired up about it as well as our neurosurgeon in San Diego is. Of course if PD1 comes open for compassionate use we would go that route but it may be an option you want to look into.
Blessings,
Holly
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- February 4, 2014 at 6:34 am
Arthur – It sucks being in this position. My husband was on zelboraf (he was responsive temporarily) and also just finished ipi in December. We were unable to get onto the PD1 trial because of brain mets and other things that started appearing and that is why we went with ipi. Anyway, now as you know it is impossible to find a pd1 trial that is still recriuiting. We just started a new trial at The Angeles Clinic with Dr. Hamid in Los Angeles with a drug called MSB0010445 combined with stereotactic radiosurgery. On the clinicaltrial.gov website it says it's only available in Massachusetts but like are said we are doing it in Los Angeles. Dr. Hamid seems pretty fired up about it as well as our neurosurgeon in San Diego is. Of course if PD1 comes open for compassionate use we would go that route but it may be an option you want to look into.
Blessings,
Holly
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- February 4, 2014 at 12:18 pm
Artie, I can't speak to Zel, but the GSK combo (when it works) does work on bone mets. I have several tumors in my spine that have shrunk on the combo. If the combo works, it might (emphasize might) enhance your ipi treatment by giving your immune system something (dying tumors) to aim at.
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- February 4, 2014 at 12:18 pm
Artie, I can't speak to Zel, but the GSK combo (when it works) does work on bone mets. I have several tumors in my spine that have shrunk on the combo. If the combo works, it might (emphasize might) enhance your ipi treatment by giving your immune system something (dying tumors) to aim at.
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- February 4, 2014 at 12:18 pm
Artie, I can't speak to Zel, but the GSK combo (when it works) does work on bone mets. I have several tumors in my spine that have shrunk on the combo. If the combo works, it might (emphasize might) enhance your ipi treatment by giving your immune system something (dying tumors) to aim at.
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- February 4, 2014 at 8:22 pm
Thanks. I will probably have to start it next week but dunno yet. With zelboraf just 30 seconds of unprotected almost sun down sunlight caused a squamish on my neck they had to do 2 surgeries on so I'm just not good at these meds it seems. I'll have to be even more careful with this.
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- February 4, 2014 at 8:22 pm
Thanks. I will probably have to start it next week but dunno yet. With zelboraf just 30 seconds of unprotected almost sun down sunlight caused a squamish on my neck they had to do 2 surgeries on so I'm just not good at these meds it seems. I'll have to be even more careful with this.
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- February 4, 2014 at 8:22 pm
Thanks. I will probably have to start it next week but dunno yet. With zelboraf just 30 seconds of unprotected almost sun down sunlight caused a squamish on my neck they had to do 2 surgeries on so I'm just not good at these meds it seems. I'll have to be even more careful with this.
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- February 5, 2014 at 12:33 am
Artie,
I'm going for my first set of scans after almost 3 months (started Dec 5) of the TAFINLAR + MEKINIST
Combo.
I too have bone mets…..femur, humerus, ribcage, sacrum, and brain stalk. I have (or had) palpable nodes in my neck.
Today the nodes/tumors in my neck are no longer palpable and you can barely even feel where they were. We are hoping for a positive scan.
In short i'm with you on the bones…I feel your pain on the trials. I was trying to get into one when the scans showed my spread so i was then able to get the combo prescribed to me.
I really think my Onc wanted me on PD1 but saw there was no way to do it yet. The combo may be worth your trying….but i understand your position since you had Zelboraf. Definitely keep looking and asking about trials and treatments.
Where are you located?
I'm with you and will let you know if i learn anything but…so far minimal to moderate side effects on combo and we hope it is doing its job.
All the best
Matt
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- February 5, 2014 at 3:22 am
Good luck on your scan. Sounds like it will be better than mine. I'm in Saint Louis, MO.
The non nivo PD1 seems to be available at Sarah Cannon and Moffit. But my Dr said if it is any PD1 I should go for it cause they are all the same. But I'm also thinking more about the MSB0010445/radiation so if I do that I might not get excluded when they do the nivo/litrilumab sometime maybe in the 2nd quarter. So I gotta do those calls tomorrow and see. But with the t10 collapsed 50% and already radiated once I can't do radiation to that area anyway so I dunno which trial to do.
I also don't understand how the PD1 in my blood can get inside the bones where the mel is. That seems to not be likely thus why these meds are failing for me except they are keeping the mel out of everything else so far.
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- February 5, 2014 at 4:26 am
Artie,
The anti-PD1, whichever brand, is not going to get into your bones (or for other folks their brains) necessarily. BUT…the T-cells the anti-PD1 stimulates CAN!!!!!! That's the deal about immunotherapies. THEY don't have to reach the cancer cells. The T-cells they have triggered do that!!! Hope that helps. c
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- February 5, 2014 at 4:26 am
Artie,
The anti-PD1, whichever brand, is not going to get into your bones (or for other folks their brains) necessarily. BUT…the T-cells the anti-PD1 stimulates CAN!!!!!! That's the deal about immunotherapies. THEY don't have to reach the cancer cells. The T-cells they have triggered do that!!! Hope that helps. c
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- February 5, 2014 at 4:26 am
Artie,
The anti-PD1, whichever brand, is not going to get into your bones (or for other folks their brains) necessarily. BUT…the T-cells the anti-PD1 stimulates CAN!!!!!! That's the deal about immunotherapies. THEY don't have to reach the cancer cells. The T-cells they have triggered do that!!! Hope that helps. c
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- February 5, 2014 at 3:22 am
Good luck on your scan. Sounds like it will be better than mine. I'm in Saint Louis, MO.
The non nivo PD1 seems to be available at Sarah Cannon and Moffit. But my Dr said if it is any PD1 I should go for it cause they are all the same. But I'm also thinking more about the MSB0010445/radiation so if I do that I might not get excluded when they do the nivo/litrilumab sometime maybe in the 2nd quarter. So I gotta do those calls tomorrow and see. But with the t10 collapsed 50% and already radiated once I can't do radiation to that area anyway so I dunno which trial to do.
I also don't understand how the PD1 in my blood can get inside the bones where the mel is. That seems to not be likely thus why these meds are failing for me except they are keeping the mel out of everything else so far.
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- February 5, 2014 at 3:22 am
Good luck on your scan. Sounds like it will be better than mine. I'm in Saint Louis, MO.
The non nivo PD1 seems to be available at Sarah Cannon and Moffit. But my Dr said if it is any PD1 I should go for it cause they are all the same. But I'm also thinking more about the MSB0010445/radiation so if I do that I might not get excluded when they do the nivo/litrilumab sometime maybe in the 2nd quarter. So I gotta do those calls tomorrow and see. But with the t10 collapsed 50% and already radiated once I can't do radiation to that area anyway so I dunno which trial to do.
I also don't understand how the PD1 in my blood can get inside the bones where the mel is. That seems to not be likely thus why these meds are failing for me except they are keeping the mel out of everything else so far.
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- February 5, 2014 at 11:14 am
check out the video
Mekinist/Tafinlar for melanoma
http://news.yahoo.com/video/therapy-melanoma-patients-local-tie-232929575.html
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- February 5, 2014 at 11:14 am
check out the video
Mekinist/Tafinlar for melanoma
http://news.yahoo.com/video/therapy-melanoma-patients-local-tie-232929575.html
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- February 5, 2014 at 11:14 am
check out the video
Mekinist/Tafinlar for melanoma
http://news.yahoo.com/video/therapy-melanoma-patients-local-tie-232929575.html
-
- February 5, 2014 at 11:14 am
check out the video
Mekinist/Tafinlar for melanoma
http://news.yahoo.com/video/therapy-melanoma-patients-local-tie-232929575.html
-
- February 5, 2014 at 11:14 am
check out the video
Mekinist/Tafinlar for melanoma
http://news.yahoo.com/video/therapy-melanoma-patients-local-tie-232929575.html
-
- February 5, 2014 at 11:14 am
check out the video
Mekinist/Tafinlar for melanoma
http://news.yahoo.com/video/therapy-melanoma-patients-local-tie-232929575.html
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- February 5, 2014 at 12:33 am
Artie,
I'm going for my first set of scans after almost 3 months (started Dec 5) of the TAFINLAR + MEKINIST
Combo.
I too have bone mets…..femur, humerus, ribcage, sacrum, and brain stalk. I have (or had) palpable nodes in my neck.
Today the nodes/tumors in my neck are no longer palpable and you can barely even feel where they were. We are hoping for a positive scan.
In short i'm with you on the bones…I feel your pain on the trials. I was trying to get into one when the scans showed my spread so i was then able to get the combo prescribed to me.
I really think my Onc wanted me on PD1 but saw there was no way to do it yet. The combo may be worth your trying….but i understand your position since you had Zelboraf. Definitely keep looking and asking about trials and treatments.
Where are you located?
I'm with you and will let you know if i learn anything but…so far minimal to moderate side effects on combo and we hope it is doing its job.
All the best
Matt
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- February 5, 2014 at 12:33 am
Artie,
I'm going for my first set of scans after almost 3 months (started Dec 5) of the TAFINLAR + MEKINIST
Combo.
I too have bone mets…..femur, humerus, ribcage, sacrum, and brain stalk. I have (or had) palpable nodes in my neck.
Today the nodes/tumors in my neck are no longer palpable and you can barely even feel where they were. We are hoping for a positive scan.
In short i'm with you on the bones…I feel your pain on the trials. I was trying to get into one when the scans showed my spread so i was then able to get the combo prescribed to me.
I really think my Onc wanted me on PD1 but saw there was no way to do it yet. The combo may be worth your trying….but i understand your position since you had Zelboraf. Definitely keep looking and asking about trials and treatments.
Where are you located?
I'm with you and will let you know if i learn anything but…so far minimal to moderate side effects on combo and we hope it is doing its job.
All the best
Matt
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