› Forums › Cutaneous Melanoma Community › IL 2, and what’s going on with me..
- This topic has 63 replies, 17 voices, and was last updated 11 years, 1 month ago by
MichaelLee.
- Post
-
- February 15, 2013 at 4:25 pm
Hi,
I'm not sure I need to give my history, but I will, briefly, just for s*it and giggles. I've been on this board, on and off, since 2003
I was diagnosed with my 1st melanoma 30 yrs ago this month, a shallow spreading surface melanoma. Followed by another and an in situ the same year, 1983.
Hi,
I'm not sure I need to give my history, but I will, briefly, just for s*it and giggles. I've been on this board, on and off, since 2003
I was diagnosed with my 1st melanoma 30 yrs ago this month, a shallow spreading surface melanoma. Followed by another and an in situ the same year, 1983.
In the early 2000's I develeoped a hard lump at the site of my previous in situ scar, which raised the scar itself up, and for a year and a half my derm told me it was a keiloid. But eventually I insisted he remove it, and I was diagnosed with stage IIIB melanoma, There were some satelitte lesions, in transit, but no lymph node basin involvement, so no LND.
I did interferon for 10 months, forced off by side effects involving my lungs.
I was NED then from that point to late 2008, when I developed a couple of subcutaneous tumors in my left leg. The first was removed, the second, removed with tissue collection and sent to HOAG in california, where I entered a vaccine trial (MACVAC) I finished that in late 2010, but had a small tumor growing in my lung already..which did not light up the PET scan until my November 2012 PET (we traced it back on the scans and had been monitoring it all along, but it was not PET reactive)
Because of my history of single nodules and slow progression, we opted for SBRT, high dose radiation therapy, to remove that small tumor, and I did that in December. If you are interested in that, I'm sure the description of my radiation experience is still on the board and searchable through my name.
That's about the most concise history I've ever given, and it brings us up to date.
I had PET/CT a week ago and got my results on tuesday. That radiation seem to have worked on that one spot, but another has arisen in my right lung, and an equivocable one on my left lung.
I'm still feeling fine but have decided I need systemic treatment. I've been doing a lot of research….as much as I could get done between my tuesday appt with the radiation oncologist, and my thursday appt with my medical oncologist. I've been looking at trials in my own region, and also talking to some people about IL 2.
My plan was to, first, see what my own oncologist had to offer and discuss. Since we are not at a big melanoma center, and he has no trials in the game, I always feel like he has my best interest at heart, and his past actions have shown me that too. So I always like to hear what he has to say before I start throwing stuff out there. But, because we aren't really at a Melanoma center, my other plan was to see a specialist for a consult before I finish the whole decision making process. Just in case there are better ideas about treatment than My doctor and I can come up with here in spokane.
So I saw him yesterday and the first thing he did was ask me to confirm his thoughts that I had never had IL 2. I was kind of surprised, since I was kind of leaning toward IL 2 myself. He thinks it should be my first line of defense instead of my last. He gave me good reasons. His chief reason is close to mine, that there's a chance, however slim, of durable remission. Also, though a tough treatment, it would be done soon, could be done here in town, leave me open for other treatments, even perhaps boost the efficiency of future treatments. Now long term side effects.
Anyway..before we got that far into the discussion, he told me that he wanted me to go to SCCA for a consultation at the melanoma clinic, but he thinks they will agree that I should try IL 2 first (!) But we are both open to the possibility that there might be something better that they might suggest.
Frankly, having done trials far from my own town, I know that it's not something I'm dying to do…though I could. I rather not bring huge debt on my family either.
I'm not making any decisions till I get all my info in, but I know there are plenty of folks on this board who have done IL 2…Yesterday I spoke to someone who had not even heard IL 2 mentioned by her doctor. So maybe it's a time we had an IL 2 discussion on this board.
I'm thinking now might be the TIME for me to do IL2
Dian
- Replies
-
-
- February 15, 2013 at 4:50 pm
Dian,
I think that your approach is great looking into treatment options close to home. You do not need the additional stress & cost if you can get treatment closer to home.
There are many people who have done IL2 & have beeen long term responders. I hope that people like Kim K. & othesr will post for you. My husband did IL2 in 2009 and has remained NED. We also chose IL2 because we wanted a chance to have a LONG term response.
I personally think that IL2 & Yervoy, both treatments approvedby FDA, could give you along term response & boost your immune system without having to get into the restrictions of clinical trials. Many people have had long term response from doing Yervoy. Hopefully they will post also. I believe Clinical trials are good but you are still dealing with experiemental drugs that have not been proven effective over the long term.
Good Luck with your decision. When is your appointment with SCCA??? Please keep us posted on your final decision.
Betsy
-
- February 15, 2013 at 4:50 pm
Dian,
I think that your approach is great looking into treatment options close to home. You do not need the additional stress & cost if you can get treatment closer to home.
There are many people who have done IL2 & have beeen long term responders. I hope that people like Kim K. & othesr will post for you. My husband did IL2 in 2009 and has remained NED. We also chose IL2 because we wanted a chance to have a LONG term response.
I personally think that IL2 & Yervoy, both treatments approvedby FDA, could give you along term response & boost your immune system without having to get into the restrictions of clinical trials. Many people have had long term response from doing Yervoy. Hopefully they will post also. I believe Clinical trials are good but you are still dealing with experiemental drugs that have not been proven effective over the long term.
Good Luck with your decision. When is your appointment with SCCA??? Please keep us posted on your final decision.
Betsy
-
- February 15, 2013 at 4:50 pm
Dian,
I think that your approach is great looking into treatment options close to home. You do not need the additional stress & cost if you can get treatment closer to home.
There are many people who have done IL2 & have beeen long term responders. I hope that people like Kim K. & othesr will post for you. My husband did IL2 in 2009 and has remained NED. We also chose IL2 because we wanted a chance to have a LONG term response.
I personally think that IL2 & Yervoy, both treatments approvedby FDA, could give you along term response & boost your immune system without having to get into the restrictions of clinical trials. Many people have had long term response from doing Yervoy. Hopefully they will post also. I believe Clinical trials are good but you are still dealing with experiemental drugs that have not been proven effective over the long term.
Good Luck with your decision. When is your appointment with SCCA??? Please keep us posted on your final decision.
Betsy
-
- February 15, 2013 at 5:23 pm
Dian, I think high dose IL2 is a good choice for you, at this time in your fight! My husband did high dose IL2 following TiL in Houston, and had minimal trouble tolerating his two rounds (8 bags, 10 bags) and had a fairly smooth recovery! The key is to be in a center that gives a lot of high dose IL2, as they know how to medicate every problem. Plus, you know by the scans after round two, if it’s making an impact on the melanoma. Good luck to you, you can do this treatment, and there is a chance you will be one of the lucky ones who gets a durable response! Take good care, Valerie (Phil’s wife) -
- February 15, 2013 at 5:23 pm
Dian, I think high dose IL2 is a good choice for you, at this time in your fight! My husband did high dose IL2 following TiL in Houston, and had minimal trouble tolerating his two rounds (8 bags, 10 bags) and had a fairly smooth recovery! The key is to be in a center that gives a lot of high dose IL2, as they know how to medicate every problem. Plus, you know by the scans after round two, if it’s making an impact on the melanoma. Good luck to you, you can do this treatment, and there is a chance you will be one of the lucky ones who gets a durable response! Take good care, Valerie (Phil’s wife) -
- February 15, 2013 at 5:23 pm
Dian, I think high dose IL2 is a good choice for you, at this time in your fight! My husband did high dose IL2 following TiL in Houston, and had minimal trouble tolerating his two rounds (8 bags, 10 bags) and had a fairly smooth recovery! The key is to be in a center that gives a lot of high dose IL2, as they know how to medicate every problem. Plus, you know by the scans after round two, if it’s making an impact on the melanoma. Good luck to you, you can do this treatment, and there is a chance you will be one of the lucky ones who gets a durable response! Take good care, Valerie (Phil’s wife)
-
- February 15, 2013 at 5:18 pm
Dian,
I have not done IL2 I'm still stage 3A. I just wanted to tell you that I have done a lot of thinking and research and if I were in the same situation I'd be thinking the exact same idea as you. Just wanted to let you know that and let you know that I'm thinking of you and wishing you well with whatever you decide.
Amy S. in Michigan
-
- February 15, 2013 at 5:18 pm
Dian,
I have not done IL2 I'm still stage 3A. I just wanted to tell you that I have done a lot of thinking and research and if I were in the same situation I'd be thinking the exact same idea as you. Just wanted to let you know that and let you know that I'm thinking of you and wishing you well with whatever you decide.
Amy S. in Michigan
-
- February 15, 2013 at 5:18 pm
Dian,
I have not done IL2 I'm still stage 3A. I just wanted to tell you that I have done a lot of thinking and research and if I were in the same situation I'd be thinking the exact same idea as you. Just wanted to let you know that and let you know that I'm thinking of you and wishing you well with whatever you decide.
Amy S. in Michigan
-
- February 15, 2013 at 5:26 pm
Hi Dian,
Did you take Yervoy off the table as an option? Did the sub q's play into that decision? We are watching a thing in my lung to and will be most likely making these decisions too. Please keep updating on what you do.
Good luck Dian,
Colleen
-
- February 15, 2013 at 5:26 pm
Hi Dian,
Did you take Yervoy off the table as an option? Did the sub q's play into that decision? We are watching a thing in my lung to and will be most likely making these decisions too. Please keep updating on what you do.
Good luck Dian,
Colleen
-
- February 15, 2013 at 5:26 pm
Hi Dian,
Did you take Yervoy off the table as an option? Did the sub q's play into that decision? We are watching a thing in my lung to and will be most likely making these decisions too. Please keep updating on what you do.
Good luck Dian,
Colleen
-
- February 15, 2013 at 6:46 pm
Colleen,
I've not taken Yervoy off the table. I will discuss Yervoy over at SCCA with the melanoma specialist. I figure s/he will know more about it, and other current trials and options, than my local oncologist. I'll be seeing him again before I make a decision too, so I might ask him more about it.
But he made it pretty clear that IL 2 would be his first choice. And my thinking is that I can try other things after IL 2 if it doesn't work. That might not work in reverse. If I try Yervoy, the side effects, and possible progression of my disease while waiting for results could put me in a place where IL 2 would no longer be an option.
But it's still on the table
dian
-
- February 15, 2013 at 6:46 pm
Colleen,
I've not taken Yervoy off the table. I will discuss Yervoy over at SCCA with the melanoma specialist. I figure s/he will know more about it, and other current trials and options, than my local oncologist. I'll be seeing him again before I make a decision too, so I might ask him more about it.
But he made it pretty clear that IL 2 would be his first choice. And my thinking is that I can try other things after IL 2 if it doesn't work. That might not work in reverse. If I try Yervoy, the side effects, and possible progression of my disease while waiting for results could put me in a place where IL 2 would no longer be an option.
But it's still on the table
dian
-
- February 15, 2013 at 6:46 pm
Colleen,
I've not taken Yervoy off the table. I will discuss Yervoy over at SCCA with the melanoma specialist. I figure s/he will know more about it, and other current trials and options, than my local oncologist. I'll be seeing him again before I make a decision too, so I might ask him more about it.
But he made it pretty clear that IL 2 would be his first choice. And my thinking is that I can try other things after IL 2 if it doesn't work. That might not work in reverse. If I try Yervoy, the side effects, and possible progression of my disease while waiting for results could put me in a place where IL 2 would no longer be an option.
But it's still on the table
dian
-
- February 15, 2013 at 5:28 pm
Dian-
For what it is worth, what you are proposing makes good sense to me. Being healthy with a low tumor burden and an apparently slow-growing disease, it makes good sense to go with an immunological treatment with the possibility of long-term (permanent?) remission. High-dose IL-2 and Yervoy are both good choices. It might be even better to take both of them in sequence, but I am not sure which should come first– IL-2 or Yervoy? You might ask Dr. Weber at Moffitt for his advice on sequencing ( jeffrey.weber@moffitt.org ).
You're doing great! Just keep doing what you are doing and keep us posted.
-
- February 15, 2013 at 5:28 pm
Dian-
For what it is worth, what you are proposing makes good sense to me. Being healthy with a low tumor burden and an apparently slow-growing disease, it makes good sense to go with an immunological treatment with the possibility of long-term (permanent?) remission. High-dose IL-2 and Yervoy are both good choices. It might be even better to take both of them in sequence, but I am not sure which should come first– IL-2 or Yervoy? You might ask Dr. Weber at Moffitt for his advice on sequencing ( jeffrey.weber@moffitt.org ).
You're doing great! Just keep doing what you are doing and keep us posted.
-
- February 15, 2013 at 5:28 pm
Dian-
For what it is worth, what you are proposing makes good sense to me. Being healthy with a low tumor burden and an apparently slow-growing disease, it makes good sense to go with an immunological treatment with the possibility of long-term (permanent?) remission. High-dose IL-2 and Yervoy are both good choices. It might be even better to take both of them in sequence, but I am not sure which should come first– IL-2 or Yervoy? You might ask Dr. Weber at Moffitt for his advice on sequencing ( jeffrey.weber@moffitt.org ).
You're doing great! Just keep doing what you are doing and keep us posted.
-
- February 15, 2013 at 7:57 pm
Hi Dian,
We spoke on chat room earlier this week and I am the woman y'all think is a man! : ))
I do go to SCCA and I would strongly encourage you to go their first and hear what they have to say and then check into their recommendations. In the beginning IL2 was suggested but not as a first line of treatment and is still being postponed for me in lieu of other treatments that seem more promising, like TIL, I started with MAGE A-3 and then ippi.
Please feel free to contact me, I would be happy to share any info I can with you about me, my melanoma history and treatments and also my experiences at SCCA. ([email protected])
Good luck with your discoveries and keep us updated!
Swanee
-
- February 15, 2013 at 7:57 pm
Hi Dian,
We spoke on chat room earlier this week and I am the woman y'all think is a man! : ))
I do go to SCCA and I would strongly encourage you to go their first and hear what they have to say and then check into their recommendations. In the beginning IL2 was suggested but not as a first line of treatment and is still being postponed for me in lieu of other treatments that seem more promising, like TIL, I started with MAGE A-3 and then ippi.
Please feel free to contact me, I would be happy to share any info I can with you about me, my melanoma history and treatments and also my experiences at SCCA. ([email protected])
Good luck with your discoveries and keep us updated!
Swanee
-
- February 15, 2013 at 7:57 pm
Hi Dian,
We spoke on chat room earlier this week and I am the woman y'all think is a man! : ))
I do go to SCCA and I would strongly encourage you to go their first and hear what they have to say and then check into their recommendations. In the beginning IL2 was suggested but not as a first line of treatment and is still being postponed for me in lieu of other treatments that seem more promising, like TIL, I started with MAGE A-3 and then ippi.
Please feel free to contact me, I would be happy to share any info I can with you about me, my melanoma history and treatments and also my experiences at SCCA. ([email protected])
Good luck with your discoveries and keep us updated!
Swanee
-
- February 15, 2013 at 11:46 pm
Dian,
Do you know which Dr. you will see at SCCA? I have been a patient of Dr. Kim Margolin's since 2009 and did IL-2 at UW. From what I read you are on a good path and also lucky in that you tumor burden doesn't seem too great and is progressing rather slowly. I'm certain that SCCA will have some options for you, HD IL-2 being one of them. I would not hesitate to recommend doing IL-2 at UW. The team there was great at getting me through it.
It has been a while since I last checked what trials they are running but I took part in a trial that paired infusion of your own expanded lymphocytes (not TIL cells) with ipilbumab and low dose IL-2. I'm sure they have other stuff going on. I also know that they are in the process of setting up their own TIL program which would be the first on the west coast. Although, I think they are far from getting that off the ground.
Personally, I would choose to do IL-2 as a first line. The option to get a long term durable response without long term risks and taking meds is great, in my opinion. While IL-2 is hard – it ends! and you bounce back pretty quick. Also, you don't really burn any bridges to other therapies should you need them.
Good luck and don't hesitate to contact me if you have any questions.
Best, Troy
-
- February 15, 2013 at 11:46 pm
Dian,
Do you know which Dr. you will see at SCCA? I have been a patient of Dr. Kim Margolin's since 2009 and did IL-2 at UW. From what I read you are on a good path and also lucky in that you tumor burden doesn't seem too great and is progressing rather slowly. I'm certain that SCCA will have some options for you, HD IL-2 being one of them. I would not hesitate to recommend doing IL-2 at UW. The team there was great at getting me through it.
It has been a while since I last checked what trials they are running but I took part in a trial that paired infusion of your own expanded lymphocytes (not TIL cells) with ipilbumab and low dose IL-2. I'm sure they have other stuff going on. I also know that they are in the process of setting up their own TIL program which would be the first on the west coast. Although, I think they are far from getting that off the ground.
Personally, I would choose to do IL-2 as a first line. The option to get a long term durable response without long term risks and taking meds is great, in my opinion. While IL-2 is hard – it ends! and you bounce back pretty quick. Also, you don't really burn any bridges to other therapies should you need them.
Good luck and don't hesitate to contact me if you have any questions.
Best, Troy
-
- February 15, 2013 at 11:46 pm
Dian,
Do you know which Dr. you will see at SCCA? I have been a patient of Dr. Kim Margolin's since 2009 and did IL-2 at UW. From what I read you are on a good path and also lucky in that you tumor burden doesn't seem too great and is progressing rather slowly. I'm certain that SCCA will have some options for you, HD IL-2 being one of them. I would not hesitate to recommend doing IL-2 at UW. The team there was great at getting me through it.
It has been a while since I last checked what trials they are running but I took part in a trial that paired infusion of your own expanded lymphocytes (not TIL cells) with ipilbumab and low dose IL-2. I'm sure they have other stuff going on. I also know that they are in the process of setting up their own TIL program which would be the first on the west coast. Although, I think they are far from getting that off the ground.
Personally, I would choose to do IL-2 as a first line. The option to get a long term durable response without long term risks and taking meds is great, in my opinion. While IL-2 is hard – it ends! and you bounce back pretty quick. Also, you don't really burn any bridges to other therapies should you need them.
Good luck and don't hesitate to contact me if you have any questions.
Best, Troy
-
- February 16, 2013 at 12:24 am
Dian, when You activate your immune system, T cells multiply and divide and secrete IL-2. IL-2 is a growth factor for your t- cells. But, by growing your T-cells, you also grow T-Regs cells that hamper the immune response. Yervoy, blocks the T-Regs cell suppression and takes the brakes off the immune response. I would ask the oncologist if you could do yervoy or anti- pd-1 first followed With IL-2.See my posts on this site or go to melanoma missionary on the internet.
Best regards,
Jimmy b
-
- February 16, 2013 at 12:24 am
Dian, when You activate your immune system, T cells multiply and divide and secrete IL-2. IL-2 is a growth factor for your t- cells. But, by growing your T-cells, you also grow T-Regs cells that hamper the immune response. Yervoy, blocks the T-Regs cell suppression and takes the brakes off the immune response. I would ask the oncologist if you could do yervoy or anti- pd-1 first followed With IL-2.See my posts on this site or go to melanoma missionary on the internet.
Best regards,
Jimmy b
-
- February 16, 2013 at 12:24 am
Dian, when You activate your immune system, T cells multiply and divide and secrete IL-2. IL-2 is a growth factor for your t- cells. But, by growing your T-cells, you also grow T-Regs cells that hamper the immune response. Yervoy, blocks the T-Regs cell suppression and takes the brakes off the immune response. I would ask the oncologist if you could do yervoy or anti- pd-1 first followed With IL-2.See my posts on this site or go to melanoma missionary on the internet.
Best regards,
Jimmy b
-
- February 16, 2013 at 12:26 am
Dian, when You activate your immune system, T cells multiply and divide and secrete IL-2. IL-2 is a growth factor for your t- cells. But, by growing your T-cells, you also grow T-Regs cells that hamper the immune response. Yervoy, blocks the T-Regs cell suppression and takes the brakes off the immune response. I would ask the oncologist if you could do yervoy or anti- pd-1 first followed With IL-2.See my posts on this site or go to melanoma missionary on the internet.
Best regards,
Jimmy b
-
- February 16, 2013 at 12:26 am
Dian, when You activate your immune system, T cells multiply and divide and secrete IL-2. IL-2 is a growth factor for your t- cells. But, by growing your T-cells, you also grow T-Regs cells that hamper the immune response. Yervoy, blocks the T-Regs cell suppression and takes the brakes off the immune response. I would ask the oncologist if you could do yervoy or anti- pd-1 first followed With IL-2.See my posts on this site or go to melanoma missionary on the internet.
Best regards,
Jimmy b
-
- February 16, 2013 at 12:26 am
Dian, when You activate your immune system, T cells multiply and divide and secrete IL-2. IL-2 is a growth factor for your t- cells. But, by growing your T-cells, you also grow T-Regs cells that hamper the immune response. Yervoy, blocks the T-Regs cell suppression and takes the brakes off the immune response. I would ask the oncologist if you could do yervoy or anti- pd-1 first followed With IL-2.See my posts on this site or go to melanoma missionary on the internet.
Best regards,
Jimmy b
-
- February 16, 2013 at 12:27 am
Dian, when You activate your immune system, T cells multiply and divide and secrete IL-2. IL-2 is a growth factor for your t- cells. But, by growing your T-cells, you also grow T-Regs cells that hamper the immune response. Yervoy, blocks the T-Regs cell suppression and takes the brakes off the immune response. I would ask the oncologist if you could do yervoy or anti- pd-1 first followed With IL-2.See my posts on this site or go to melanoma missionary on the internet.
Best regards,
Jimmy b
-
- February 16, 2013 at 12:27 am
Dian, when You activate your immune system, T cells multiply and divide and secrete IL-2. IL-2 is a growth factor for your t- cells. But, by growing your T-cells, you also grow T-Regs cells that hamper the immune response. Yervoy, blocks the T-Regs cell suppression and takes the brakes off the immune response. I would ask the oncologist if you could do yervoy or anti- pd-1 first followed With IL-2.See my posts on this site or go to melanoma missionary on the internet.
Best regards,
Jimmy b
-
- February 16, 2013 at 12:27 am
Dian, when You activate your immune system, T cells multiply and divide and secrete IL-2. IL-2 is a growth factor for your t- cells. But, by growing your T-cells, you also grow T-Regs cells that hamper the immune response. Yervoy, blocks the T-Regs cell suppression and takes the brakes off the immune response. I would ask the oncologist if you could do yervoy or anti- pd-1 first followed With IL-2.See my posts on this site or go to melanoma missionary on the internet.
Best regards,
Jimmy b
-
- February 16, 2013 at 12:57 am
Yeah, you know my story.
Summary – HD-IL2 now because you are healthy, may stimulate your immune system even if it "doesn't work" such that yervoy afterwards can be an ace in the hole. Everything else stops working for most people. The melanoma finds a back door to sneak back in. I would save those drugs for later use if need be, and get the most out of HD-IL2 right now.
Call me if you want the gory details, but I am glad I did it.
One suggestion – studies suggest that you get even higher response rates (up to 25-30% I think) if you do TIL then HD-IL2 right after with a higher percentage of complete responders as well. Not as many centers do the TIL/IL-2 combo, but if in your shoes.
The one reason I didn't do it and went with just HD-IL2 was because at the time in 2009, there weren't the results just yet compareing it to just HD-IL2. I would have had to leave my kids and fly to the mainland with nobody to stay with me. It would take about 1 month to go through the entire thing (at least until I could fly back home anyway).
IMHO – keep the other drugs / trials as your plan B if IL-2 or TIL / IL2 fails.
If you decied to go this route, call me and I can give you some pointers that really help. After the second day I quit eating because I was so bloated. I had no appetite, but other than the runs on the first cycle and arrythmias on the second (or was it the first), I was pretty comfortable. Just tired and peeling with a very very raw back side. Mostly I slept.
Hugs – Kim
-
- February 16, 2013 at 12:57 am
Yeah, you know my story.
Summary – HD-IL2 now because you are healthy, may stimulate your immune system even if it "doesn't work" such that yervoy afterwards can be an ace in the hole. Everything else stops working for most people. The melanoma finds a back door to sneak back in. I would save those drugs for later use if need be, and get the most out of HD-IL2 right now.
Call me if you want the gory details, but I am glad I did it.
One suggestion – studies suggest that you get even higher response rates (up to 25-30% I think) if you do TIL then HD-IL2 right after with a higher percentage of complete responders as well. Not as many centers do the TIL/IL-2 combo, but if in your shoes.
The one reason I didn't do it and went with just HD-IL2 was because at the time in 2009, there weren't the results just yet compareing it to just HD-IL2. I would have had to leave my kids and fly to the mainland with nobody to stay with me. It would take about 1 month to go through the entire thing (at least until I could fly back home anyway).
IMHO – keep the other drugs / trials as your plan B if IL-2 or TIL / IL2 fails.
If you decied to go this route, call me and I can give you some pointers that really help. After the second day I quit eating because I was so bloated. I had no appetite, but other than the runs on the first cycle and arrythmias on the second (or was it the first), I was pretty comfortable. Just tired and peeling with a very very raw back side. Mostly I slept.
Hugs – Kim
-
- February 16, 2013 at 12:57 am
Yeah, you know my story.
Summary – HD-IL2 now because you are healthy, may stimulate your immune system even if it "doesn't work" such that yervoy afterwards can be an ace in the hole. Everything else stops working for most people. The melanoma finds a back door to sneak back in. I would save those drugs for later use if need be, and get the most out of HD-IL2 right now.
Call me if you want the gory details, but I am glad I did it.
One suggestion – studies suggest that you get even higher response rates (up to 25-30% I think) if you do TIL then HD-IL2 right after with a higher percentage of complete responders as well. Not as many centers do the TIL/IL-2 combo, but if in your shoes.
The one reason I didn't do it and went with just HD-IL2 was because at the time in 2009, there weren't the results just yet compareing it to just HD-IL2. I would have had to leave my kids and fly to the mainland with nobody to stay with me. It would take about 1 month to go through the entire thing (at least until I could fly back home anyway).
IMHO – keep the other drugs / trials as your plan B if IL-2 or TIL / IL2 fails.
If you decied to go this route, call me and I can give you some pointers that really help. After the second day I quit eating because I was so bloated. I had no appetite, but other than the runs on the first cycle and arrythmias on the second (or was it the first), I was pretty comfortable. Just tired and peeling with a very very raw back side. Mostly I slept.
Hugs – Kim
-
- February 16, 2013 at 1:28 am
Hi Diane,
You might want to do a google search of a local guy from my area that is being treated at Moffitt Center in Tampa, FL under the care of Dr. Weber. His name is T.J and his blog is Patient #1. I think JimmyB would like to read on TJ's treatment. The reason he is patient #1 is that his treatment that he is under is the first time it's been done from what I understand. That's why he's Patient #1.
He is dong Chemo,IL2. TIL and Yervoy. This is what I gathered from his blog post Chemo, . 2 Yervoy treatments followed by TIL followed by IL2 followed by 2 more Yervoy. I see that he did 7 bags of IL2. I'm not sure how many rounds of IL2. A preliminary scan is scheduled for the end of February, but we won’t know for sure until early April how well this worked.
It just amazes me the treatments being offered. I think it's fantastic. All the best to you Diane. I love that your educating yourself.
Wendy
-
- February 16, 2013 at 1:28 am
Hi Diane,
You might want to do a google search of a local guy from my area that is being treated at Moffitt Center in Tampa, FL under the care of Dr. Weber. His name is T.J and his blog is Patient #1. I think JimmyB would like to read on TJ's treatment. The reason he is patient #1 is that his treatment that he is under is the first time it's been done from what I understand. That's why he's Patient #1.
He is dong Chemo,IL2. TIL and Yervoy. This is what I gathered from his blog post Chemo, . 2 Yervoy treatments followed by TIL followed by IL2 followed by 2 more Yervoy. I see that he did 7 bags of IL2. I'm not sure how many rounds of IL2. A preliminary scan is scheduled for the end of February, but we won’t know for sure until early April how well this worked.
It just amazes me the treatments being offered. I think it's fantastic. All the best to you Diane. I love that your educating yourself.
Wendy
-
- February 16, 2013 at 1:28 am
Hi Diane,
You might want to do a google search of a local guy from my area that is being treated at Moffitt Center in Tampa, FL under the care of Dr. Weber. His name is T.J and his blog is Patient #1. I think JimmyB would like to read on TJ's treatment. The reason he is patient #1 is that his treatment that he is under is the first time it's been done from what I understand. That's why he's Patient #1.
He is dong Chemo,IL2. TIL and Yervoy. This is what I gathered from his blog post Chemo, . 2 Yervoy treatments followed by TIL followed by IL2 followed by 2 more Yervoy. I see that he did 7 bags of IL2. I'm not sure how many rounds of IL2. A preliminary scan is scheduled for the end of February, but we won’t know for sure until early April how well this worked.
It just amazes me the treatments being offered. I think it's fantastic. All the best to you Diane. I love that your educating yourself.
Wendy
-
- February 16, 2013 at 2:41 am
Dian, what a timely post. I’m pondering the same treatment. IL2 sounds rough but may be better to try sooner rather than later. My Onc at Dana Farber didn’t really offer it as an option, she felt an anti PD1 trial would be best if I can get in, otherwise I’m scheduled to start Ipilimumab on March 1. I’m seeing my local Onc next week to discuss further. One question, what is Til? -
- February 16, 2013 at 2:41 am
Dian, what a timely post. I’m pondering the same treatment. IL2 sounds rough but may be better to try sooner rather than later. My Onc at Dana Farber didn’t really offer it as an option, she felt an anti PD1 trial would be best if I can get in, otherwise I’m scheduled to start Ipilimumab on March 1. I’m seeing my local Onc next week to discuss further. One question, what is Til?-
- February 16, 2013 at 4:02 am
TIL is tumor infiltrating lymphocytes.. I b'lieve.
It's a serious protocol, where they remove your white blood cells, do chemo, then do the IL 2 after. You might be able to find it by searching the board for TIL
hey thanks to everyone so far for your great input!
dian
-
- February 16, 2013 at 4:02 am
TIL is tumor infiltrating lymphocytes.. I b'lieve.
It's a serious protocol, where they remove your white blood cells, do chemo, then do the IL 2 after. You might be able to find it by searching the board for TIL
hey thanks to everyone so far for your great input!
dian
-
- February 17, 2013 at 12:52 am
Hey Dian,
I did IL2. It was hard, but not nearly as bad as some others have posted. I did every single bag, never had rigors, had severe rash which was controlled as best possible, rash meds made me sleep a lot, which is a good thing. Every week diarrhea hit in the 3rd day so I learned to be prepared & bring many pairs of underwear. More details in private email if you want. Weight gain comes off & getting strength back during following week at home.
Didn’t mean to give so many details; just wanted to tell you I did it & got over it. Sorry bout that…
Hope this helps & pls message me if you want more info.
Karen -
- February 17, 2013 at 12:52 am
Hey Dian,
I did IL2. It was hard, but not nearly as bad as some others have posted. I did every single bag, never had rigors, had severe rash which was controlled as best possible, rash meds made me sleep a lot, which is a good thing. Every week diarrhea hit in the 3rd day so I learned to be prepared & bring many pairs of underwear. More details in private email if you want. Weight gain comes off & getting strength back during following week at home.
Didn’t mean to give so many details; just wanted to tell you I did it & got over it. Sorry bout that…
Hope this helps & pls message me if you want more info.
Karen -
- February 17, 2013 at 12:52 am
Hey Dian,
I did IL2. It was hard, but not nearly as bad as some others have posted. I did every single bag, never had rigors, had severe rash which was controlled as best possible, rash meds made me sleep a lot, which is a good thing. Every week diarrhea hit in the 3rd day so I learned to be prepared & bring many pairs of underwear. More details in private email if you want. Weight gain comes off & getting strength back during following week at home.
Didn’t mean to give so many details; just wanted to tell you I did it & got over it. Sorry bout that…
Hope this helps & pls message me if you want more info.
Karen -
- February 19, 2013 at 3:11 pm
My Daughter endured two separate trials of the TIL process at the NIH in Bethesda, MD. She also endured Interferon, IL-2, CTLA-4, Temador and other protocols. As one of the earlier posters noted, you need to be cautious in what order you inter into these treatments. In some cases, if you do A before B then you are not eligible for C, but if you do B before A you may be considered for C.
Anyway, as my Daughter told her many Docs, Bring it on!. She endured two rounds (not just 2 segments) of IL-2 and was determined to whip this thing, i ncluding two lung surgeries within two months.
Keep the faith and never give up hope!
-
- February 19, 2013 at 3:11 pm
My Daughter endured two separate trials of the TIL process at the NIH in Bethesda, MD. She also endured Interferon, IL-2, CTLA-4, Temador and other protocols. As one of the earlier posters noted, you need to be cautious in what order you inter into these treatments. In some cases, if you do A before B then you are not eligible for C, but if you do B before A you may be considered for C.
Anyway, as my Daughter told her many Docs, Bring it on!. She endured two rounds (not just 2 segments) of IL-2 and was determined to whip this thing, i ncluding two lung surgeries within two months.
Keep the faith and never give up hope!
-
- February 19, 2013 at 3:11 pm
My Daughter endured two separate trials of the TIL process at the NIH in Bethesda, MD. She also endured Interferon, IL-2, CTLA-4, Temador and other protocols. As one of the earlier posters noted, you need to be cautious in what order you inter into these treatments. In some cases, if you do A before B then you are not eligible for C, but if you do B before A you may be considered for C.
Anyway, as my Daughter told her many Docs, Bring it on!. She endured two rounds (not just 2 segments) of IL-2 and was determined to whip this thing, i ncluding two lung surgeries within two months.
Keep the faith and never give up hope!
-
- February 16, 2013 at 4:02 am
TIL is tumor infiltrating lymphocytes.. I b'lieve.
It's a serious protocol, where they remove your white blood cells, do chemo, then do the IL 2 after. You might be able to find it by searching the board for TIL
hey thanks to everyone so far for your great input!
dian
-
- February 16, 2013 at 2:41 am
Dian, what a timely post. I’m pondering the same treatment. IL2 sounds rough but may be better to try sooner rather than later. My Onc at Dana Farber didn’t really offer it as an option, she felt an anti PD1 trial would be best if I can get in, otherwise I’m scheduled to start Ipilimumab on March 1. I’m seeing my local Onc next week to discuss further. One question, what is Til? -
- February 18, 2013 at 10:59 pm
Hi Dian
I saw your post while visiting my 88 year old mother.
Sorry to hear about the latest news with the lungs but your determination can be felt through the monitor as I type into this screen. Prayers and best wishes for you.
I sometimes come to the site but never see any chatters like we used to have here.
Anyway, I hope to catch you in chat as I will be tuning in more frequently.
Still working on cat litter and trying to self teach myself electric guitar.
I am up soon for scans in a few months
Take care and good luck with IL-2 if you go that route..
Mike K
-
- February 18, 2013 at 10:59 pm
Hi Dian
I saw your post while visiting my 88 year old mother.
Sorry to hear about the latest news with the lungs but your determination can be felt through the monitor as I type into this screen. Prayers and best wishes for you.
I sometimes come to the site but never see any chatters like we used to have here.
Anyway, I hope to catch you in chat as I will be tuning in more frequently.
Still working on cat litter and trying to self teach myself electric guitar.
I am up soon for scans in a few months
Take care and good luck with IL-2 if you go that route..
Mike K
-
- February 18, 2013 at 10:59 pm
Hi Dian
I saw your post while visiting my 88 year old mother.
Sorry to hear about the latest news with the lungs but your determination can be felt through the monitor as I type into this screen. Prayers and best wishes for you.
I sometimes come to the site but never see any chatters like we used to have here.
Anyway, I hope to catch you in chat as I will be tuning in more frequently.
Still working on cat litter and trying to self teach myself electric guitar.
I am up soon for scans in a few months
Take care and good luck with IL-2 if you go that route..
Mike K
-
- February 19, 2013 at 3:31 pm
Hi Dian,
My husband did IL-2 in April 2008 due to lung mets, then had surgeries following. You can read his profile. I say your doctor is right, if Bob had waited maybe IL-2 would no longer have been an option. You have to be healthy to handle that choice. It is rough but it was worth it. I don't know what the future will bring but we have enjoyed almost 4 years of NED. I know it was the right decision for us.
God Bless you and good luck on this path! We will all be pulling for you.
Rebecca
-
- February 19, 2013 at 3:31 pm
Hi Dian,
My husband did IL-2 in April 2008 due to lung mets, then had surgeries following. You can read his profile. I say your doctor is right, if Bob had waited maybe IL-2 would no longer have been an option. You have to be healthy to handle that choice. It is rough but it was worth it. I don't know what the future will bring but we have enjoyed almost 4 years of NED. I know it was the right decision for us.
God Bless you and good luck on this path! We will all be pulling for you.
Rebecca
-
- February 19, 2013 at 3:31 pm
Hi Dian,
My husband did IL-2 in April 2008 due to lung mets, then had surgeries following. You can read his profile. I say your doctor is right, if Bob had waited maybe IL-2 would no longer have been an option. You have to be healthy to handle that choice. It is rough but it was worth it. I don't know what the future will bring but we have enjoyed almost 4 years of NED. I know it was the right decision for us.
God Bless you and good luck on this path! We will all be pulling for you.
Rebecca
-
- March 2, 2013 at 4:06 am
Dian,
Good luck with whatever you choose. I was in a similar situation as you last year and I chose to go for HD IL-2. I'm glad I did.
I was diagnosed in 2007 and have been Stage IV since 2009. My cancer started in my left leg, moved to the groin, then my chest, axillary nodes and eventually into my lungs. By early last year I had 7 tumors in both lungs. I have had several wide excisions, interferon, and radiation.
I did three rounds (6 weeks of IL-2) in 2012. It was difficult, but worth it. After each round, I had a CT scan and each scan showed tumor shrinkage. By the end of the year, there was minimal evidence of disease and my scan last week showed just the slightest hint of 2 nodules in my lungs. I feel pretty optimistic at this point and am very glad I did the IL-2. It's no picnic, but if you put your head down, you can grind it out. I feel physically great now and have no lingering problems.
Best wishes,
Michael Lee
-
- March 2, 2013 at 4:06 am
Dian,
Good luck with whatever you choose. I was in a similar situation as you last year and I chose to go for HD IL-2. I'm glad I did.
I was diagnosed in 2007 and have been Stage IV since 2009. My cancer started in my left leg, moved to the groin, then my chest, axillary nodes and eventually into my lungs. By early last year I had 7 tumors in both lungs. I have had several wide excisions, interferon, and radiation.
I did three rounds (6 weeks of IL-2) in 2012. It was difficult, but worth it. After each round, I had a CT scan and each scan showed tumor shrinkage. By the end of the year, there was minimal evidence of disease and my scan last week showed just the slightest hint of 2 nodules in my lungs. I feel pretty optimistic at this point and am very glad I did the IL-2. It's no picnic, but if you put your head down, you can grind it out. I feel physically great now and have no lingering problems.
Best wishes,
Michael Lee
-
- March 2, 2013 at 4:06 am
Dian,
Good luck with whatever you choose. I was in a similar situation as you last year and I chose to go for HD IL-2. I'm glad I did.
I was diagnosed in 2007 and have been Stage IV since 2009. My cancer started in my left leg, moved to the groin, then my chest, axillary nodes and eventually into my lungs. By early last year I had 7 tumors in both lungs. I have had several wide excisions, interferon, and radiation.
I did three rounds (6 weeks of IL-2) in 2012. It was difficult, but worth it. After each round, I had a CT scan and each scan showed tumor shrinkage. By the end of the year, there was minimal evidence of disease and my scan last week showed just the slightest hint of 2 nodules in my lungs. I feel pretty optimistic at this point and am very glad I did the IL-2. It's no picnic, but if you put your head down, you can grind it out. I feel physically great now and have no lingering problems.
Best wishes,
Michael Lee
-
- March 2, 2013 at 4:06 am
Dian,
Good luck with whatever you choose. I was in a similar situation as you last year and I chose to go for HD IL-2. I'm glad I did.
I was diagnosed in 2007 and have been Stage IV since 2009. My cancer started in my left leg, moved to the groin, then my chest, axillary nodes and eventually into my lungs. By early last year I had 7 tumors in both lungs. I have had several wide excisions, interferon, and radiation.
I did three rounds (6 weeks of IL-2) in 2012. It was difficult, but worth it. After each round, I had a CT scan and each scan showed tumor shrinkage. By the end of the year, there was minimal evidence of disease and my scan last week showed just the slightest hint of 2 nodules in my lungs. I feel pretty optimistic at this point and am very glad I did the IL-2. It's no picnic, but if you put your head down, you can grind it out. I feel physically great now and have no lingering problems.
Best wishes,
Michael Lee
-
- March 2, 2013 at 4:06 am
Dian,
Good luck with whatever you choose. I was in a similar situation as you last year and I chose to go for HD IL-2. I'm glad I did.
I was diagnosed in 2007 and have been Stage IV since 2009. My cancer started in my left leg, moved to the groin, then my chest, axillary nodes and eventually into my lungs. By early last year I had 7 tumors in both lungs. I have had several wide excisions, interferon, and radiation.
I did three rounds (6 weeks of IL-2) in 2012. It was difficult, but worth it. After each round, I had a CT scan and each scan showed tumor shrinkage. By the end of the year, there was minimal evidence of disease and my scan last week showed just the slightest hint of 2 nodules in my lungs. I feel pretty optimistic at this point and am very glad I did the IL-2. It's no picnic, but if you put your head down, you can grind it out. I feel physically great now and have no lingering problems.
Best wishes,
Michael Lee
-
- March 2, 2013 at 4:06 am
Dian,
Good luck with whatever you choose. I was in a similar situation as you last year and I chose to go for HD IL-2. I'm glad I did.
I was diagnosed in 2007 and have been Stage IV since 2009. My cancer started in my left leg, moved to the groin, then my chest, axillary nodes and eventually into my lungs. By early last year I had 7 tumors in both lungs. I have had several wide excisions, interferon, and radiation.
I did three rounds (6 weeks of IL-2) in 2012. It was difficult, but worth it. After each round, I had a CT scan and each scan showed tumor shrinkage. By the end of the year, there was minimal evidence of disease and my scan last week showed just the slightest hint of 2 nodules in my lungs. I feel pretty optimistic at this point and am very glad I did the IL-2. It's no picnic, but if you put your head down, you can grind it out. I feel physically great now and have no lingering problems.
Best wishes,
Michael Lee
-
Tagged: cutaneous melanoma
- You must be logged in to reply to this topic.