› Forums › General Melanoma Community › Anderson
- This topic has 51 replies, 8 voices, and was last updated 9 years, 3 months ago by
_Paul_.
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- November 26, 2016 at 1:27 am
Well I'm off to MD Anderson tomorrow. I think the seed of the idea to do this was planted by Ed who said I should talk to Josh. I tried to get hold of Josh using the MRF messaging system (which I have never had any luck with in the past), and failing that, lurked his posts to see he is going to Anderson for ACT.
Sometime around then it dawned on me that Anderson has the biggest melanoma program, period, so why wasn't I at least getting an opinion from them?
So, we will see.
I had a sobering conversation with the lead researcher for the TIL in Seattle who pointed out the possibility that I am no longer responding to immunotherapy (having failed both ipi and pembro as mono treatments). In which case TIL will be useless.
But I don't have a better plan, so unless Anderson has something compelling, the plan is to start the old-school TIL regimen around Dec. 13. I was supposed to start a week earlier, but they have been having problems "growing good TIL" from their current batch of donor blood which they hope to have cleared up by then.
I can feel my energy level subsiding and my breathing is a little more labored than it used to be (my biggest tumor is encircling a major airtube in my lower right lobe).
I have come to grow accustomed to Zaphod, the sub-q on my right shoulder. I think of it as a barometer. If I feel that sucker shrinking while on some hopefully-soon treatment, I will be quite pleased.
– Paul
- Replies
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- November 26, 2016 at 1:58 am
Please also ask about their take on intralesional therapies…since there is Zaphod and all!!! Keeping my fingers crossed for you!!! celeste
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- November 26, 2016 at 9:17 pm
Hey Paul,
I've been off the board for awhile, but just saw your post. If you need anything at all while in Houston, feel free to reach out. My husband and I live about 12 miles away from MD Anderson. If you need transportation, food, etc, please don't hesitate to ask. We work right by MD Anderson as well, it's easy for us to get around.
Wishing you the best regardless of what treatment you end up doing! Many thoughts and prayers your way.
Best,
Jackie
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- November 26, 2016 at 9:17 pm
Hey Paul,
I've been off the board for awhile, but just saw your post. If you need anything at all while in Houston, feel free to reach out. My husband and I live about 12 miles away from MD Anderson. If you need transportation, food, etc, please don't hesitate to ask. We work right by MD Anderson as well, it's easy for us to get around.
Wishing you the best regardless of what treatment you end up doing! Many thoughts and prayers your way.
Best,
Jackie
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- November 26, 2016 at 9:17 pm
Hey Paul,
I've been off the board for awhile, but just saw your post. If you need anything at all while in Houston, feel free to reach out. My husband and I live about 12 miles away from MD Anderson. If you need transportation, food, etc, please don't hesitate to ask. We work right by MD Anderson as well, it's easy for us to get around.
Wishing you the best regardless of what treatment you end up doing! Many thoughts and prayers your way.
Best,
Jackie
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- November 27, 2016 at 3:49 am
Paul-
Glad to hear you're heading to MDA. Who are you seeing? The clinical coordinator there is Janae and research nurse is Vruti. Both good, think very highly of them. Trial is 2 phases
Leukapheresis-collection of cells then takes 6-8 weeks to grow cells
Infusion- in hospital 2-3 nights. Wasn't bad at all. You give yourself injections of low dose IL-2 and you do 4 doses of ipi.
They think I'm getting benefit because things have slowed down on progression front. I've had sub q tumors get sore, hard and then smaller. Unfortunately they didn't resolve…some actually feel bigger now. I have one on my deltoid that is inflamed again and now what feels like the size of a golf ball. I've just finished my 4th dose of ipi. See if anything else happens.
I think it's good to have TIL in back pocket even if you go old school. I'd ask doc at MDA about biopsy if you can as they have a lot of TIL options. Either way, I've been told it's harsh but if it works…it works. Think response rate is around 50%. Could be wrong…too much crap running through my head. Best wishes, let me know if you have questions…I can try to message you.
Josh
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- November 27, 2016 at 8:23 pm
Hi Josh, great to hear from you. My appointment is with Isabella Glitza. It's just the initial consultation. I haven't even spoken to them about treatment options yet. I want to leave all options open at the start and see what they come up with.
I wanted to come here because they have such a large melanoma program. Maybe they have something better than TIL.
Im sorry to hear about the sub-q in your deltoid. I only have one (all the others are inside) but a golfball sized sucker does not sound like fun.
Where do you stay when you travel here?
– Paul
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- November 27, 2016 at 11:03 pm
Paul-
I've only heard good things about her and know she's personally involved in many of the trials. They should be able to lay out some options.
I unfortunately have multiple sub q's and internal tumors. They're very optimistic but I'm assuming that's what they need to do. If I remember they were starting an intralesional combo trial. Not sure if it's started but worth asking about. Celeste is a fan of this and I think we will see more and more of this. Both of my oncs thinks there's something there. I'll be interested in what they suggest.
Ive stayed in medical district every time. Usually now I stay at Wyndham. Best price in area and I can walk to hospital. I've stayed at Marriott and Hilton but they can get pricey.
Wishing you the best!!
Josh
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- November 28, 2016 at 3:09 pm
I know what you mean about the optimism. It gets old. By the time people like you and I get to where we are we have heard lots of false optimism.
I'm definitely going to ask about the interlesional.
Coincidentally I am also at the Wyndham. Maybe we might bump into one another in the near future. That would be cool.
I hope your treatment is the one that finally renders you NED.
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- November 28, 2016 at 3:09 pm
I know what you mean about the optimism. It gets old. By the time people like you and I get to where we are we have heard lots of false optimism.
I'm definitely going to ask about the interlesional.
Coincidentally I am also at the Wyndham. Maybe we might bump into one another in the near future. That would be cool.
I hope your treatment is the one that finally renders you NED.
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- November 28, 2016 at 3:09 pm
I know what you mean about the optimism. It gets old. By the time people like you and I get to where we are we have heard lots of false optimism.
I'm definitely going to ask about the interlesional.
Coincidentally I am also at the Wyndham. Maybe we might bump into one another in the near future. That would be cool.
I hope your treatment is the one that finally renders you NED.
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- November 27, 2016 at 11:03 pm
Paul-
I've only heard good things about her and know she's personally involved in many of the trials. They should be able to lay out some options.
I unfortunately have multiple sub q's and internal tumors. They're very optimistic but I'm assuming that's what they need to do. If I remember they were starting an intralesional combo trial. Not sure if it's started but worth asking about. Celeste is a fan of this and I think we will see more and more of this. Both of my oncs thinks there's something there. I'll be interested in what they suggest.
Ive stayed in medical district every time. Usually now I stay at Wyndham. Best price in area and I can walk to hospital. I've stayed at Marriott and Hilton but they can get pricey.
Wishing you the best!!
Josh
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- November 27, 2016 at 11:03 pm
Paul-
I've only heard good things about her and know she's personally involved in many of the trials. They should be able to lay out some options.
I unfortunately have multiple sub q's and internal tumors. They're very optimistic but I'm assuming that's what they need to do. If I remember they were starting an intralesional combo trial. Not sure if it's started but worth asking about. Celeste is a fan of this and I think we will see more and more of this. Both of my oncs thinks there's something there. I'll be interested in what they suggest.
Ive stayed in medical district every time. Usually now I stay at Wyndham. Best price in area and I can walk to hospital. I've stayed at Marriott and Hilton but they can get pricey.
Wishing you the best!!
Josh
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- November 28, 2016 at 8:12 pm
Paul, Looking forward to hearing about your experience. Dr. Glitza would likely be Adriana's next step as she is the only one (as far as I can tell) with any success treating LMD (I know your issues are different.) Maybe coffee sometime after you return if you're up for it.
Rob
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- November 28, 2016 at 8:12 pm
Paul, Looking forward to hearing about your experience. Dr. Glitza would likely be Adriana's next step as she is the only one (as far as I can tell) with any success treating LMD (I know your issues are different.) Maybe coffee sometime after you return if you're up for it.
Rob
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- November 29, 2016 at 10:18 pm
Hi Rob!
I would love to chat but I think we need to do it over the phone. I think I am going to squeak a quick trip in to Lima before I start treatment. My email isthermaller@comcast.net. Drop me a line and I will give you my cell.
– Paul.
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- November 29, 2016 at 10:19 pm
Ugh, it's thermaller@comcast.net
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- November 29, 2016 at 10:19 pm
Ugh, it's thermaller@comcast.net
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- November 29, 2016 at 10:19 pm
Ugh, it's thermaller@comcast.net
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- November 29, 2016 at 10:18 pm
Hi Rob!
I would love to chat but I think we need to do it over the phone. I think I am going to squeak a quick trip in to Lima before I start treatment. My email isthermaller@comcast.net. Drop me a line and I will give you my cell.
– Paul.
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- November 29, 2016 at 10:18 pm
Hi Rob!
I would love to chat but I think we need to do it over the phone. I think I am going to squeak a quick trip in to Lima before I start treatment. My email isthermaller@comcast.net. Drop me a line and I will give you my cell.
– Paul.
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- November 28, 2016 at 8:12 pm
Paul, Looking forward to hearing about your experience. Dr. Glitza would likely be Adriana's next step as she is the only one (as far as I can tell) with any success treating LMD (I know your issues are different.) Maybe coffee sometime after you return if you're up for it.
Rob
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- November 27, 2016 at 8:23 pm
Hi Josh, great to hear from you. My appointment is with Isabella Glitza. It's just the initial consultation. I haven't even spoken to them about treatment options yet. I want to leave all options open at the start and see what they come up with.
I wanted to come here because they have such a large melanoma program. Maybe they have something better than TIL.
Im sorry to hear about the sub-q in your deltoid. I only have one (all the others are inside) but a golfball sized sucker does not sound like fun.
Where do you stay when you travel here?
– Paul
-
- November 27, 2016 at 8:23 pm
Hi Josh, great to hear from you. My appointment is with Isabella Glitza. It's just the initial consultation. I haven't even spoken to them about treatment options yet. I want to leave all options open at the start and see what they come up with.
I wanted to come here because they have such a large melanoma program. Maybe they have something better than TIL.
Im sorry to hear about the sub-q in your deltoid. I only have one (all the others are inside) but a golfball sized sucker does not sound like fun.
Where do you stay when you travel here?
– Paul
-
- November 27, 2016 at 3:49 am
Paul-
Glad to hear you're heading to MDA. Who are you seeing? The clinical coordinator there is Janae and research nurse is Vruti. Both good, think very highly of them. Trial is 2 phases
Leukapheresis-collection of cells then takes 6-8 weeks to grow cells
Infusion- in hospital 2-3 nights. Wasn't bad at all. You give yourself injections of low dose IL-2 and you do 4 doses of ipi.
They think I'm getting benefit because things have slowed down on progression front. I've had sub q tumors get sore, hard and then smaller. Unfortunately they didn't resolve…some actually feel bigger now. I have one on my deltoid that is inflamed again and now what feels like the size of a golf ball. I've just finished my 4th dose of ipi. See if anything else happens.
I think it's good to have TIL in back pocket even if you go old school. I'd ask doc at MDA about biopsy if you can as they have a lot of TIL options. Either way, I've been told it's harsh but if it works…it works. Think response rate is around 50%. Could be wrong…too much crap running through my head. Best wishes, let me know if you have questions…I can try to message you.
Josh
-
- November 27, 2016 at 3:49 am
Paul-
Glad to hear you're heading to MDA. Who are you seeing? The clinical coordinator there is Janae and research nurse is Vruti. Both good, think very highly of them. Trial is 2 phases
Leukapheresis-collection of cells then takes 6-8 weeks to grow cells
Infusion- in hospital 2-3 nights. Wasn't bad at all. You give yourself injections of low dose IL-2 and you do 4 doses of ipi.
They think I'm getting benefit because things have slowed down on progression front. I've had sub q tumors get sore, hard and then smaller. Unfortunately they didn't resolve…some actually feel bigger now. I have one on my deltoid that is inflamed again and now what feels like the size of a golf ball. I've just finished my 4th dose of ipi. See if anything else happens.
I think it's good to have TIL in back pocket even if you go old school. I'd ask doc at MDA about biopsy if you can as they have a lot of TIL options. Either way, I've been told it's harsh but if it works…it works. Think response rate is around 50%. Could be wrong…too much crap running through my head. Best wishes, let me know if you have questions…I can try to message you.
Josh
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- November 27, 2016 at 9:17 am
Paul, good luck at Anderson. I'm glad to hear that you're going there. I'd be surprised if they didn't offer you at least one option that wasn't apparent before your visit.
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- November 27, 2016 at 1:15 pm
Just beware that much of MDA's rep is based on their own marketing. They still offer interferon and biochemo. Turn the biochemo down if offered. UCLA is also great place of research. I hope you have someone with you to help with many layers of admin there, I remember Artie from here being terribly lost in the system. Good luck.
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- November 27, 2016 at 1:15 pm
Just beware that much of MDA's rep is based on their own marketing. They still offer interferon and biochemo. Turn the biochemo down if offered. UCLA is also great place of research. I hope you have someone with you to help with many layers of admin there, I remember Artie from here being terribly lost in the system. Good luck.
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- November 27, 2016 at 1:15 pm
Just beware that much of MDA's rep is based on their own marketing. They still offer interferon and biochemo. Turn the biochemo down if offered. UCLA is also great place of research. I hope you have someone with you to help with many layers of admin there, I remember Artie from here being terribly lost in the system. Good luck.
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- November 28, 2016 at 7:59 pm
Paul:
Hope the MDA visit goes well. The MRF has worked closely with several doctors and researchers who are there so if I can be of any help let me know.
The docs I know are all great people, but MDA is a behemoth and you can get swept up in the system a bit. I know they want to change that, so if you feel that things are becoming impersonal don't hesitate to reach out.
MDA is good at marketing, as someone else pointed out, but that doesn't change the fact that they have a very good melanoma program–certainly a large program but, more importantly, one of the top hand-full of programs in terms of knowing the treatment landscape and pushing the field forward through trials.
Tim–MRF
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- November 28, 2016 at 7:59 pm
Paul:
Hope the MDA visit goes well. The MRF has worked closely with several doctors and researchers who are there so if I can be of any help let me know.
The docs I know are all great people, but MDA is a behemoth and you can get swept up in the system a bit. I know they want to change that, so if you feel that things are becoming impersonal don't hesitate to reach out.
MDA is good at marketing, as someone else pointed out, but that doesn't change the fact that they have a very good melanoma program–certainly a large program but, more importantly, one of the top hand-full of programs in terms of knowing the treatment landscape and pushing the field forward through trials.
Tim–MRF
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- November 29, 2016 at 11:07 pm
Thanks Tim.
It *is* very large but it was not overwhelming. Maybe they have streamlined things already.
I first met with registration which went smoothly since I used their patient portal to pre-answer their questionnaires.
One does need a lot of patience though. After sitting alone in a cold exam room for over an hour wearing a gown I finally had to go and whine a little to get some action.
But it was all well worth it for the peace of mind I received after an in depth convo with Dr. Glitza.
– Paul
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- November 29, 2016 at 11:07 pm
Thanks Tim.
It *is* very large but it was not overwhelming. Maybe they have streamlined things already.
I first met with registration which went smoothly since I used their patient portal to pre-answer their questionnaires.
One does need a lot of patience though. After sitting alone in a cold exam room for over an hour wearing a gown I finally had to go and whine a little to get some action.
But it was all well worth it for the peace of mind I received after an in depth convo with Dr. Glitza.
– Paul
-
- November 29, 2016 at 11:07 pm
Thanks Tim.
It *is* very large but it was not overwhelming. Maybe they have streamlined things already.
I first met with registration which went smoothly since I used their patient portal to pre-answer their questionnaires.
One does need a lot of patience though. After sitting alone in a cold exam room for over an hour wearing a gown I finally had to go and whine a little to get some action.
But it was all well worth it for the peace of mind I received after an in depth convo with Dr. Glitza.
– Paul
-
- November 28, 2016 at 7:59 pm
Paul:
Hope the MDA visit goes well. The MRF has worked closely with several doctors and researchers who are there so if I can be of any help let me know.
The docs I know are all great people, but MDA is a behemoth and you can get swept up in the system a bit. I know they want to change that, so if you feel that things are becoming impersonal don't hesitate to reach out.
MDA is good at marketing, as someone else pointed out, but that doesn't change the fact that they have a very good melanoma program–certainly a large program but, more importantly, one of the top hand-full of programs in terms of knowing the treatment landscape and pushing the field forward through trials.
Tim–MRF
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