› Forums › General Melanoma Community › Please help – Newly diagnosed Metastatic Melanoma: Interferon Treatment Next
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- May 23, 2015 at 5:20 pm
Hi there,
I am female, 37 years old, single with no children. I mention this because I don't really have a network of people who understand this disease or a support group close to me.
On March 9, 2015, after a lymph node was removed in my left groin area (due to pain and swelling), I was told the dissection showed an aggressive form of Melanoma in two lymph nodes. I took a leave of absence from work in NC and relocated to Baltimore. All my specialists and providers are at Hopkins now. I have had all the lymph nodes removed in my groin, as well as all the usual tests: PET, CT, EUS, EGD and multiple biopsies.
The next step is really where all my questions stem from and I cannot seem to find the answers. I begin Interferon in a week and keep forgetting (really get tongue tied) to ask my physicians, despite even writing down questions. My interferon protocol is for 12 months, 1x a week injections I can do at home; however I have been reading that the first month is done at the hospital (inpatient?, IV?)? Can anyone walk me through the process step-by-step or at least the first month. It would be especially great if someone has done it at Hopkins.
I am categorized as Stage IIIC
Lastly, perhaps I should start a different thread for this but can someone help me with how they dealt with the side effects of the treatment? I'm already in a lot of pain in my stomach, stressed out and have horrible headaches.
On a side note, I have switched my diet to all organic primarily vegetables and fruits (75/25) and am very careful about what I eat. Prior to this, I was very athletic and healthy, running marathons and could still flip around being that I was a gymnast and still coached on the side.
Thank you so much in advance! God bless all of you and my prayers will be with everyone and be hoping for the best in their journey.
Courtney
- Replies
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- May 23, 2015 at 7:02 pm
Hi Courtney,
Who are you seeing at Hopkins? Lipson or maybe Scharfman? Whoever you are seeing, hopefully it is a melanoma specialist. I ask because Interferon is a controversial treatment these days. It is the standard of care for stage 3, but it has been shown not to provide very much benefit (no increase in long term survival rate for example) and it is a tough treatment to go through. The other standard of care option for stage 3 is watch and wait.
I was in your shoes a couple of years ago, and I didn't like either of those options. I did find a clinical trial (at Hopkins of all places–I live in Seattle) which to me seemed like a better choice.
I know firsthand that Dr. Lipson is a very knowledgeable melanoma specialist (he was the Doctor I would see each time I flew there for a treatment), and he would be a great one to ask about clinical trials for Stage 3.
Good luck! – Paul
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- May 23, 2015 at 7:02 pm
Hi Courtney,
Who are you seeing at Hopkins? Lipson or maybe Scharfman? Whoever you are seeing, hopefully it is a melanoma specialist. I ask because Interferon is a controversial treatment these days. It is the standard of care for stage 3, but it has been shown not to provide very much benefit (no increase in long term survival rate for example) and it is a tough treatment to go through. The other standard of care option for stage 3 is watch and wait.
I was in your shoes a couple of years ago, and I didn't like either of those options. I did find a clinical trial (at Hopkins of all places–I live in Seattle) which to me seemed like a better choice.
I know firsthand that Dr. Lipson is a very knowledgeable melanoma specialist (he was the Doctor I would see each time I flew there for a treatment), and he would be a great one to ask about clinical trials for Stage 3.
Good luck! – Paul
-
- May 23, 2015 at 11:01 pm
Hi Paul,
Thank you for your speedy reply. I'm seeing William Sharfman. My surgical oncologist is Julie Lange. So far they have been very knowledgable and confident despite my prognosis. I've been reading about the survival rates for Inferferon and your right about it being controversial. If I only have so long to live, why would I want to endure the harsh side effects and poor quality of life.
I have had conversations with MD Anderson and Sloan Kettering but it would be very difficult for me to travel to both places. They cannot give me much information either since I'm not a patient yet; however I have a record of every test and procedure done on me and the results.
I have battled the "watch and wait" as well as drastically changing my diet. However, my guilt over doing whatever is necessary is sort of driving this decision. This, along with my family members. I'm sure as most of you feel on here, I'm not fighting this solely for myself, but for the people who care about me — mostly my sister and parents.
May I ask you what you decided to do? And where you were treated at? Do you know if I will need to be admitted for the first round / first month? I really need to plan ahead and although my treatment team answers any questions I have, I am not the outspoken type I recognize I need to empower myself despite not being a clinician it's just hard and everything has happened so quickly. At least we are moving quickly though.
I am scheduled this week to check for ocular melanoma and to see a geneticist. These were two that I insisted on. Last week I saw a Gyn-Onc which none of these were even suggested to me. I figure that it couldn't hurt considering we don't know where my primary is.
As I have been reading through these posts to, I am wondering if I should get an MRI of the brain it seems that this may be protocol for people who have metastatic.
Thanks to all the wonderful people on here! It is refreshing to have found this site.
All the advice and stories on here are helping me through this!
T
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- May 24, 2015 at 2:09 pm
Courtney,
in 6 days, I will be 15 years out from my orig stage 3 dx. I had micro amounts of mm in my sentinel node in my right arm and had a full node dissection. I went through the year of Interferon. The first month was 5 days a week of IV done at my doctor's office. It usually took @ 3 hours each day but a few days it was more like 6. I then gave myself shots 3 days a week for the next 11 months. At the time I was offered Interferon and a double blinded study where I may not get the drug. At the time I was 34 with two kids aged 5 & 7. I would NOT take the chance of getting a placebo knowing that if my mm ever came back I would never be able to forgive myself.
I was one of the lucky ones that had a fairly easy time during the year. I was nauseous a lot of the time and it seemed like a headache for a year. But I was able to keep up with the regular routines of my kids and still work 35 hours a week as an accountant. Some days sucked more than others but it was certainly tolerable for me. I do personally know of others that went through the treatment that were completely debilitated during the year so I do know it can be rough.
I would advocate to look into other options as now there are many other ones that aren't as toxic. However, if you aren't able to find something else that you are comfortable with, I would certainly give Interferon a try over "watch and wait". There had been the thought that it is the month of high dose Interferon that provides the most benefit. If you could at least tolerate it for the first month, you may get what is necessary. And you may be one that is able to get through the year without much trouble.
I found this bulletin board 6 months after my dx and have been reading it every day since. You will find a lot of negative views regarding Inteferon. I would caution you I have noticed through the years many of those come from people that have "heard" Interferon has bad side effects but have not experienced them personally. I certainly encourage those that did have a negative experience to put it out there so newly dx people know the potential side effects but also wish those without experience would not try to discourage people who don't have another good option. Many people who no longer have active disease don't frequent the board as often so you may not see a fair representation of those who had a postive experience with a treatment.
My motto has been once you choose your treatment stand behind it 110% and don't look back. You never win the would of, could of, should of game. I was a few months into my year of Interferon when I read of additional trials that I might have qualified for. i was MAD that my oncologist hadn't given me any other options. That was when I decided I HAD to believe I had made the best choice given my options and move forward.
Was it the Interferon or node dissection that has rendered me NED for 15 years? I don't know nor do I care! All I can say is that I would do the same thing over again.
Best of luck with whatever treatment you decide. Please gather the courage to speak up and ask whatever questions you have and don't be afraid to question anything you don't understand. For me, the unknown is too scary. Give me the facts and let me come up with a plan. You feel so much more in control.
Take care!
Cara
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- May 24, 2015 at 2:09 pm
Courtney,
in 6 days, I will be 15 years out from my orig stage 3 dx. I had micro amounts of mm in my sentinel node in my right arm and had a full node dissection. I went through the year of Interferon. The first month was 5 days a week of IV done at my doctor's office. It usually took @ 3 hours each day but a few days it was more like 6. I then gave myself shots 3 days a week for the next 11 months. At the time I was offered Interferon and a double blinded study where I may not get the drug. At the time I was 34 with two kids aged 5 & 7. I would NOT take the chance of getting a placebo knowing that if my mm ever came back I would never be able to forgive myself.
I was one of the lucky ones that had a fairly easy time during the year. I was nauseous a lot of the time and it seemed like a headache for a year. But I was able to keep up with the regular routines of my kids and still work 35 hours a week as an accountant. Some days sucked more than others but it was certainly tolerable for me. I do personally know of others that went through the treatment that were completely debilitated during the year so I do know it can be rough.
I would advocate to look into other options as now there are many other ones that aren't as toxic. However, if you aren't able to find something else that you are comfortable with, I would certainly give Interferon a try over "watch and wait". There had been the thought that it is the month of high dose Interferon that provides the most benefit. If you could at least tolerate it for the first month, you may get what is necessary. And you may be one that is able to get through the year without much trouble.
I found this bulletin board 6 months after my dx and have been reading it every day since. You will find a lot of negative views regarding Inteferon. I would caution you I have noticed through the years many of those come from people that have "heard" Interferon has bad side effects but have not experienced them personally. I certainly encourage those that did have a negative experience to put it out there so newly dx people know the potential side effects but also wish those without experience would not try to discourage people who don't have another good option. Many people who no longer have active disease don't frequent the board as often so you may not see a fair representation of those who had a postive experience with a treatment.
My motto has been once you choose your treatment stand behind it 110% and don't look back. You never win the would of, could of, should of game. I was a few months into my year of Interferon when I read of additional trials that I might have qualified for. i was MAD that my oncologist hadn't given me any other options. That was when I decided I HAD to believe I had made the best choice given my options and move forward.
Was it the Interferon or node dissection that has rendered me NED for 15 years? I don't know nor do I care! All I can say is that I would do the same thing over again.
Best of luck with whatever treatment you decide. Please gather the courage to speak up and ask whatever questions you have and don't be afraid to question anything you don't understand. For me, the unknown is too scary. Give me the facts and let me come up with a plan. You feel so much more in control.
Take care!
Cara
-
- May 24, 2015 at 2:09 pm
Courtney,
in 6 days, I will be 15 years out from my orig stage 3 dx. I had micro amounts of mm in my sentinel node in my right arm and had a full node dissection. I went through the year of Interferon. The first month was 5 days a week of IV done at my doctor's office. It usually took @ 3 hours each day but a few days it was more like 6. I then gave myself shots 3 days a week for the next 11 months. At the time I was offered Interferon and a double blinded study where I may not get the drug. At the time I was 34 with two kids aged 5 & 7. I would NOT take the chance of getting a placebo knowing that if my mm ever came back I would never be able to forgive myself.
I was one of the lucky ones that had a fairly easy time during the year. I was nauseous a lot of the time and it seemed like a headache for a year. But I was able to keep up with the regular routines of my kids and still work 35 hours a week as an accountant. Some days sucked more than others but it was certainly tolerable for me. I do personally know of others that went through the treatment that were completely debilitated during the year so I do know it can be rough.
I would advocate to look into other options as now there are many other ones that aren't as toxic. However, if you aren't able to find something else that you are comfortable with, I would certainly give Interferon a try over "watch and wait". There had been the thought that it is the month of high dose Interferon that provides the most benefit. If you could at least tolerate it for the first month, you may get what is necessary. And you may be one that is able to get through the year without much trouble.
I found this bulletin board 6 months after my dx and have been reading it every day since. You will find a lot of negative views regarding Inteferon. I would caution you I have noticed through the years many of those come from people that have "heard" Interferon has bad side effects but have not experienced them personally. I certainly encourage those that did have a negative experience to put it out there so newly dx people know the potential side effects but also wish those without experience would not try to discourage people who don't have another good option. Many people who no longer have active disease don't frequent the board as often so you may not see a fair representation of those who had a postive experience with a treatment.
My motto has been once you choose your treatment stand behind it 110% and don't look back. You never win the would of, could of, should of game. I was a few months into my year of Interferon when I read of additional trials that I might have qualified for. i was MAD that my oncologist hadn't given me any other options. That was when I decided I HAD to believe I had made the best choice given my options and move forward.
Was it the Interferon or node dissection that has rendered me NED for 15 years? I don't know nor do I care! All I can say is that I would do the same thing over again.
Best of luck with whatever treatment you decide. Please gather the courage to speak up and ask whatever questions you have and don't be afraid to question anything you don't understand. For me, the unknown is too scary. Give me the facts and let me come up with a plan. You feel so much more in control.
Take care!
Cara
-
- May 23, 2015 at 11:01 pm
Hi Paul,
Thank you for your speedy reply. I'm seeing William Sharfman. My surgical oncologist is Julie Lange. So far they have been very knowledgable and confident despite my prognosis. I've been reading about the survival rates for Inferferon and your right about it being controversial. If I only have so long to live, why would I want to endure the harsh side effects and poor quality of life.
I have had conversations with MD Anderson and Sloan Kettering but it would be very difficult for me to travel to both places. They cannot give me much information either since I'm not a patient yet; however I have a record of every test and procedure done on me and the results.
I have battled the "watch and wait" as well as drastically changing my diet. However, my guilt over doing whatever is necessary is sort of driving this decision. This, along with my family members. I'm sure as most of you feel on here, I'm not fighting this solely for myself, but for the people who care about me — mostly my sister and parents.
May I ask you what you decided to do? And where you were treated at? Do you know if I will need to be admitted for the first round / first month? I really need to plan ahead and although my treatment team answers any questions I have, I am not the outspoken type I recognize I need to empower myself despite not being a clinician it's just hard and everything has happened so quickly. At least we are moving quickly though.
I am scheduled this week to check for ocular melanoma and to see a geneticist. These were two that I insisted on. Last week I saw a Gyn-Onc which none of these were even suggested to me. I figure that it couldn't hurt considering we don't know where my primary is.
As I have been reading through these posts to, I am wondering if I should get an MRI of the brain it seems that this may be protocol for people who have metastatic.
Thanks to all the wonderful people on here! It is refreshing to have found this site.
All the advice and stories on here are helping me through this!
T
-
- May 23, 2015 at 11:01 pm
Hi Paul,
Thank you for your speedy reply. I'm seeing William Sharfman. My surgical oncologist is Julie Lange. So far they have been very knowledgable and confident despite my prognosis. I've been reading about the survival rates for Inferferon and your right about it being controversial. If I only have so long to live, why would I want to endure the harsh side effects and poor quality of life.
I have had conversations with MD Anderson and Sloan Kettering but it would be very difficult for me to travel to both places. They cannot give me much information either since I'm not a patient yet; however I have a record of every test and procedure done on me and the results.
I have battled the "watch and wait" as well as drastically changing my diet. However, my guilt over doing whatever is necessary is sort of driving this decision. This, along with my family members. I'm sure as most of you feel on here, I'm not fighting this solely for myself, but for the people who care about me — mostly my sister and parents.
May I ask you what you decided to do? And where you were treated at? Do you know if I will need to be admitted for the first round / first month? I really need to plan ahead and although my treatment team answers any questions I have, I am not the outspoken type I recognize I need to empower myself despite not being a clinician it's just hard and everything has happened so quickly. At least we are moving quickly though.
I am scheduled this week to check for ocular melanoma and to see a geneticist. These were two that I insisted on. Last week I saw a Gyn-Onc which none of these were even suggested to me. I figure that it couldn't hurt considering we don't know where my primary is.
As I have been reading through these posts to, I am wondering if I should get an MRI of the brain it seems that this may be protocol for people who have metastatic.
Thanks to all the wonderful people on here! It is refreshing to have found this site.
All the advice and stories on here are helping me through this!
T
-
- May 23, 2015 at 7:02 pm
Hi Courtney,
Who are you seeing at Hopkins? Lipson or maybe Scharfman? Whoever you are seeing, hopefully it is a melanoma specialist. I ask because Interferon is a controversial treatment these days. It is the standard of care for stage 3, but it has been shown not to provide very much benefit (no increase in long term survival rate for example) and it is a tough treatment to go through. The other standard of care option for stage 3 is watch and wait.
I was in your shoes a couple of years ago, and I didn't like either of those options. I did find a clinical trial (at Hopkins of all places–I live in Seattle) which to me seemed like a better choice.
I know firsthand that Dr. Lipson is a very knowledgeable melanoma specialist (he was the Doctor I would see each time I flew there for a treatment), and he would be a great one to ask about clinical trials for Stage 3.
Good luck! – Paul
-
- May 23, 2015 at 8:46 pm
IMHO – I would personally avoid interferon. Follow up research says it may prolong recurance by a few months, but dosn't prolong lifespan and is very toxic. Not like IL-2, but many people here have had long term complications with the stuff ex. memory loss, other neurological issues, severe depression and and and.
There are good clinical trials I would opt for first, or if chosing the "do nothing", follow up with apropriate scans to include ultrasound of the affected nodal basin. Althogh your nodes were removed, there are always a few left behind that can flare up in the area.
Using targeted immunotherapy is very powerful. Have your melanoma tested for Braf mutation status. That information will let you know if you can participate in trials using Braf inhibitors. Much of the research is now looking at targeting the immune system.
CTLA4 inhibitors like Ipilimumab – take the brakes off our immune system to allow for a stronger response against melanoma.
Braf, MEK inhibitors – "starve" melanoma by blocking pathways it needs to grow and spread.
PD1, PDL1 – tweak our immune system to allow it to better hunt and kill melanoma.
That is a very very basic / simplistic summary of those drugs, all have potential for side effects, usually reversable, and a much better track record against melanoma.
Research also shows that the benefit of interferon is probably due to the first month of high dose and it is unceartain if the remaining 11 months of treatment make that much of a difference other than making you sick. If your oncologist shrugs your concerns off saying it is only like having the flu, run, don't walk, run away from that doctor. All of these treatments have side effects.
Lastly, no matter what you decide, never ever look back and say woulda, coulda, shoulda. Each person's melanoma journey is unique, only you with your doctors can decide what is best for you. You do your best with what you know at the time and go for it. No regrets.
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- May 23, 2015 at 11:05 pm
Kim,
Thanks for the advice. They need more people giving summations such as yours when people are first diagnosed. It at least gives me a starting point to begin researching.
Thanks again,
Court
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- May 23, 2015 at 11:05 pm
Kim,
Thanks for the advice. They need more people giving summations such as yours when people are first diagnosed. It at least gives me a starting point to begin researching.
Thanks again,
Court
-
- May 23, 2015 at 11:05 pm
Kim,
Thanks for the advice. They need more people giving summations such as yours when people are first diagnosed. It at least gives me a starting point to begin researching.
Thanks again,
Court
-
- May 23, 2015 at 8:46 pm
IMHO – I would personally avoid interferon. Follow up research says it may prolong recurance by a few months, but dosn't prolong lifespan and is very toxic. Not like IL-2, but many people here have had long term complications with the stuff ex. memory loss, other neurological issues, severe depression and and and.
There are good clinical trials I would opt for first, or if chosing the "do nothing", follow up with apropriate scans to include ultrasound of the affected nodal basin. Althogh your nodes were removed, there are always a few left behind that can flare up in the area.
Using targeted immunotherapy is very powerful. Have your melanoma tested for Braf mutation status. That information will let you know if you can participate in trials using Braf inhibitors. Much of the research is now looking at targeting the immune system.
CTLA4 inhibitors like Ipilimumab – take the brakes off our immune system to allow for a stronger response against melanoma.
Braf, MEK inhibitors – "starve" melanoma by blocking pathways it needs to grow and spread.
PD1, PDL1 – tweak our immune system to allow it to better hunt and kill melanoma.
That is a very very basic / simplistic summary of those drugs, all have potential for side effects, usually reversable, and a much better track record against melanoma.
Research also shows that the benefit of interferon is probably due to the first month of high dose and it is unceartain if the remaining 11 months of treatment make that much of a difference other than making you sick. If your oncologist shrugs your concerns off saying it is only like having the flu, run, don't walk, run away from that doctor. All of these treatments have side effects.
Lastly, no matter what you decide, never ever look back and say woulda, coulda, shoulda. Each person's melanoma journey is unique, only you with your doctors can decide what is best for you. You do your best with what you know at the time and go for it. No regrets.
-
- May 23, 2015 at 8:46 pm
IMHO – I would personally avoid interferon. Follow up research says it may prolong recurance by a few months, but dosn't prolong lifespan and is very toxic. Not like IL-2, but many people here have had long term complications with the stuff ex. memory loss, other neurological issues, severe depression and and and.
There are good clinical trials I would opt for first, or if chosing the "do nothing", follow up with apropriate scans to include ultrasound of the affected nodal basin. Althogh your nodes were removed, there are always a few left behind that can flare up in the area.
Using targeted immunotherapy is very powerful. Have your melanoma tested for Braf mutation status. That information will let you know if you can participate in trials using Braf inhibitors. Much of the research is now looking at targeting the immune system.
CTLA4 inhibitors like Ipilimumab – take the brakes off our immune system to allow for a stronger response against melanoma.
Braf, MEK inhibitors – "starve" melanoma by blocking pathways it needs to grow and spread.
PD1, PDL1 – tweak our immune system to allow it to better hunt and kill melanoma.
That is a very very basic / simplistic summary of those drugs, all have potential for side effects, usually reversable, and a much better track record against melanoma.
Research also shows that the benefit of interferon is probably due to the first month of high dose and it is unceartain if the remaining 11 months of treatment make that much of a difference other than making you sick. If your oncologist shrugs your concerns off saying it is only like having the flu, run, don't walk, run away from that doctor. All of these treatments have side effects.
Lastly, no matter what you decide, never ever look back and say woulda, coulda, shoulda. Each person's melanoma journey is unique, only you with your doctors can decide what is best for you. You do your best with what you know at the time and go for it. No regrets.
-
- May 24, 2015 at 12:39 am
Hi Courtney,
Sorry for what you are going through and facing. Check out the post by "Keeping your chin up": '…very confused…' on 5/20 as well as "New Stage II maybe IV" from 5/17 below. They were given good advice that may be applicable to you. I was diagnosed with a primary and positive node in 2003. Despite advancing to Stage IV with brain and lung mets in 2010….I am still here and NED since 2010. You have far more options than interferon, which has been proven to be very tough to take and extends survival NOT AT ALL. There are several adjuvant trial available. Here's the info on the what is probably the best thing going: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/04/ipi-vs-nivo-trial-as-adjuvant-for-stage.html
More info about adjuvant trials: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/03/new-ipi-vs-nivo-trial-for-resected.html
You were not ONCE athletic and a gymnast. You STILL ARE! Believe it. Live it. Wishing you my best. celeste
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- May 24, 2015 at 12:39 am
Hi Courtney,
Sorry for what you are going through and facing. Check out the post by "Keeping your chin up": '…very confused…' on 5/20 as well as "New Stage II maybe IV" from 5/17 below. They were given good advice that may be applicable to you. I was diagnosed with a primary and positive node in 2003. Despite advancing to Stage IV with brain and lung mets in 2010….I am still here and NED since 2010. You have far more options than interferon, which has been proven to be very tough to take and extends survival NOT AT ALL. There are several adjuvant trial available. Here's the info on the what is probably the best thing going: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/04/ipi-vs-nivo-trial-as-adjuvant-for-stage.html
More info about adjuvant trials: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/03/new-ipi-vs-nivo-trial-for-resected.html
You were not ONCE athletic and a gymnast. You STILL ARE! Believe it. Live it. Wishing you my best. celeste
-
- May 24, 2015 at 12:39 am
Hi Courtney,
Sorry for what you are going through and facing. Check out the post by "Keeping your chin up": '…very confused…' on 5/20 as well as "New Stage II maybe IV" from 5/17 below. They were given good advice that may be applicable to you. I was diagnosed with a primary and positive node in 2003. Despite advancing to Stage IV with brain and lung mets in 2010….I am still here and NED since 2010. You have far more options than interferon, which has been proven to be very tough to take and extends survival NOT AT ALL. There are several adjuvant trial available. Here's the info on the what is probably the best thing going: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/04/ipi-vs-nivo-trial-as-adjuvant-for-stage.html
More info about adjuvant trials: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/03/new-ipi-vs-nivo-trial-for-resected.html
You were not ONCE athletic and a gymnast. You STILL ARE! Believe it. Live it. Wishing you my best. celeste
-
- May 28, 2015 at 8:23 pm
Hi Celeste,
Thanks for the links. I researched and read them. I used to work at Georgetown University Hospital and they are actively recruiting at the moment. I have sent the information to my oncologist and will be meeting with him on Tuesday. At the moment, or at least my melanoma team is at CME/conference.
Once again, I appreciate the advise and research.
CT
-
- May 28, 2015 at 8:23 pm
Hi Celeste,
Thanks for the links. I researched and read them. I used to work at Georgetown University Hospital and they are actively recruiting at the moment. I have sent the information to my oncologist and will be meeting with him on Tuesday. At the moment, or at least my melanoma team is at CME/conference.
Once again, I appreciate the advise and research.
CT
-
- May 28, 2015 at 8:23 pm
Hi Celeste,
Thanks for the links. I researched and read them. I used to work at Georgetown University Hospital and they are actively recruiting at the moment. I have sent the information to my oncologist and will be meeting with him on Tuesday. At the moment, or at least my melanoma team is at CME/conference.
Once again, I appreciate the advise and research.
CT
-
- May 24, 2015 at 1:13 am
Change doctors.
Anybody recommeding interferon doesnt have your best interests at heart.
You have plenty of time dont rush into any treatment after a big operation like you have had especially when you are still sufferring adverse side effects and are not well.
You need to get healthy before you undergo any treatment.
Look around like others have posted for more viable treatment options with proven clinical evidence of increased survival.
-
- May 24, 2015 at 1:13 am
Change doctors.
Anybody recommeding interferon doesnt have your best interests at heart.
You have plenty of time dont rush into any treatment after a big operation like you have had especially when you are still sufferring adverse side effects and are not well.
You need to get healthy before you undergo any treatment.
Look around like others have posted for more viable treatment options with proven clinical evidence of increased survival.
-
- May 24, 2015 at 1:13 am
Change doctors.
Anybody recommeding interferon doesnt have your best interests at heart.
You have plenty of time dont rush into any treatment after a big operation like you have had especially when you are still sufferring adverse side effects and are not well.
You need to get healthy before you undergo any treatment.
Look around like others have posted for more viable treatment options with proven clinical evidence of increased survival.
-
- May 24, 2015 at 2:25 am
Don't do interferon. My husband was 3c and entered a clinical trial. After,a unconventional response to ipi, he is NED and is doing great. There are better options for you!
-
- May 24, 2015 at 2:25 am
Don't do interferon. My husband was 3c and entered a clinical trial. After,a unconventional response to ipi, he is NED and is doing great. There are better options for you!
-
- May 24, 2015 at 2:25 am
Don't do interferon. My husband was 3c and entered a clinical trial. After,a unconventional response to ipi, he is NED and is doing great. There are better options for you!
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- May 24, 2015 at 3:23 am
One thing you mentioned was your diet change. That is good but make sure you get lots of protein. Whether tofu or whatever.
Also you mentioned md anderson and msk. For stage 3 folks there is a good trial where you get either yervoy or pd1. They are the best standard immunotherapy meds and are standard for stage 4. I would think that trial is fairly widespread by now. You might want to seriously check into it.
Artie
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- May 24, 2015 at 3:23 am
One thing you mentioned was your diet change. That is good but make sure you get lots of protein. Whether tofu or whatever.
Also you mentioned md anderson and msk. For stage 3 folks there is a good trial where you get either yervoy or pd1. They are the best standard immunotherapy meds and are standard for stage 4. I would think that trial is fairly widespread by now. You might want to seriously check into it.
Artie
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- May 24, 2015 at 3:23 am
One thing you mentioned was your diet change. That is good but make sure you get lots of protein. Whether tofu or whatever.
Also you mentioned md anderson and msk. For stage 3 folks there is a good trial where you get either yervoy or pd1. They are the best standard immunotherapy meds and are standard for stage 4. I would think that trial is fairly widespread by now. You might want to seriously check into it.
Artie
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- May 24, 2015 at 9:22 pm
Courtney,
I'm currently undergoing Interferon treatment and am writing to give you one person's perspective of the experience. I would echo the sentiments of others who have posted here encouraging you to explore clinical trial options. Although drugs such as Yervoy, Opdivo, and Keytruda have not been approved by the FDA for the treatment of Stage 3 melanoma, they are almost certainly better options for treatment than Interferon. If you can get them through a trial, I would take them.
As far the mechanics of Interferon, my first month was administered intravenously on an outpatient basis 5 days/week for 4 weeks. Took me about an hour between administration of IV fluids and the Interferon. I was also pre-treated with Ibuprofen and Zofran, an anti-nausea medication. My worst side effect during this first month was bad fever, chills, and shakes. Frankly, I was very sick and first and didn't know if I'd make it but these side effects got MUCH better very quickly.
I'm currently on the low dose injections 3x a week at home for 11 months. I'm in month 6 right now. I've been able to work for the most part 32 hours a week but do take days off here and there due to side effects. For the most part, my worst side effects have been related to fatigue and mental side effects (brain fog/difficulty concentrating/depression). I take Zoloft for depression symptoms and it has helped greatly. I had my dose reduced by 25% after about 4 months due to the cumulative mental effects and fatigue. The dose reduction has helped my symptoms.
i would caution you that people have a wide variety of experiences with Interferon, but nearly everyone will have some side effects. For me, Interferon has not destroyed my quality of life. Yes, I sleep a little more and I'm not going to join a marathon running club anytime soon, but I'm leading a reasonably normal life. It's a tough, long treatment and I can't wait til it's over, but I'm functioning.
There's a lot of negativity surrounding Interferon and some it is justified. But if it does end up being your best option, take heart in the fact that it HAS shown to have an impact on delaying melanoma recurrence. In this day and age of rapid advances in Melanoma treatment, if you can just delay a recurrence, that's a good thing. Many stage 3ers have the surgery and do treatment and never hear from Melanoma again. And if it is ruining your health, you can always give it up. As unappealing as I'm sure that option sounds to you now, it is an option.
Best of luck
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- May 24, 2015 at 9:22 pm
Courtney,
I'm currently undergoing Interferon treatment and am writing to give you one person's perspective of the experience. I would echo the sentiments of others who have posted here encouraging you to explore clinical trial options. Although drugs such as Yervoy, Opdivo, and Keytruda have not been approved by the FDA for the treatment of Stage 3 melanoma, they are almost certainly better options for treatment than Interferon. If you can get them through a trial, I would take them.
As far the mechanics of Interferon, my first month was administered intravenously on an outpatient basis 5 days/week for 4 weeks. Took me about an hour between administration of IV fluids and the Interferon. I was also pre-treated with Ibuprofen and Zofran, an anti-nausea medication. My worst side effect during this first month was bad fever, chills, and shakes. Frankly, I was very sick and first and didn't know if I'd make it but these side effects got MUCH better very quickly.
I'm currently on the low dose injections 3x a week at home for 11 months. I'm in month 6 right now. I've been able to work for the most part 32 hours a week but do take days off here and there due to side effects. For the most part, my worst side effects have been related to fatigue and mental side effects (brain fog/difficulty concentrating/depression). I take Zoloft for depression symptoms and it has helped greatly. I had my dose reduced by 25% after about 4 months due to the cumulative mental effects and fatigue. The dose reduction has helped my symptoms.
i would caution you that people have a wide variety of experiences with Interferon, but nearly everyone will have some side effects. For me, Interferon has not destroyed my quality of life. Yes, I sleep a little more and I'm not going to join a marathon running club anytime soon, but I'm leading a reasonably normal life. It's a tough, long treatment and I can't wait til it's over, but I'm functioning.
There's a lot of negativity surrounding Interferon and some it is justified. But if it does end up being your best option, take heart in the fact that it HAS shown to have an impact on delaying melanoma recurrence. In this day and age of rapid advances in Melanoma treatment, if you can just delay a recurrence, that's a good thing. Many stage 3ers have the surgery and do treatment and never hear from Melanoma again. And if it is ruining your health, you can always give it up. As unappealing as I'm sure that option sounds to you now, it is an option.
Best of luck
-
- May 24, 2015 at 9:22 pm
Courtney,
I'm currently undergoing Interferon treatment and am writing to give you one person's perspective of the experience. I would echo the sentiments of others who have posted here encouraging you to explore clinical trial options. Although drugs such as Yervoy, Opdivo, and Keytruda have not been approved by the FDA for the treatment of Stage 3 melanoma, they are almost certainly better options for treatment than Interferon. If you can get them through a trial, I would take them.
As far the mechanics of Interferon, my first month was administered intravenously on an outpatient basis 5 days/week for 4 weeks. Took me about an hour between administration of IV fluids and the Interferon. I was also pre-treated with Ibuprofen and Zofran, an anti-nausea medication. My worst side effect during this first month was bad fever, chills, and shakes. Frankly, I was very sick and first and didn't know if I'd make it but these side effects got MUCH better very quickly.
I'm currently on the low dose injections 3x a week at home for 11 months. I'm in month 6 right now. I've been able to work for the most part 32 hours a week but do take days off here and there due to side effects. For the most part, my worst side effects have been related to fatigue and mental side effects (brain fog/difficulty concentrating/depression). I take Zoloft for depression symptoms and it has helped greatly. I had my dose reduced by 25% after about 4 months due to the cumulative mental effects and fatigue. The dose reduction has helped my symptoms.
i would caution you that people have a wide variety of experiences with Interferon, but nearly everyone will have some side effects. For me, Interferon has not destroyed my quality of life. Yes, I sleep a little more and I'm not going to join a marathon running club anytime soon, but I'm leading a reasonably normal life. It's a tough, long treatment and I can't wait til it's over, but I'm functioning.
There's a lot of negativity surrounding Interferon and some it is justified. But if it does end up being your best option, take heart in the fact that it HAS shown to have an impact on delaying melanoma recurrence. In this day and age of rapid advances in Melanoma treatment, if you can just delay a recurrence, that's a good thing. Many stage 3ers have the surgery and do treatment and never hear from Melanoma again. And if it is ruining your health, you can always give it up. As unappealing as I'm sure that option sounds to you now, it is an option.
Best of luck
-
- May 25, 2015 at 8:07 pm
Hi Courtney,
I apologize if I'm repeating what others here have said…I only skimmed the responses.
I'm hovering around stage IIIC. I say that because I did have a small lesion on one lung that did not light up on the PET scan, so I've never been definitively classified as stage IV. I have been treated with Yervoy, and have apparently had at least a partial response.
I wanted to add my voice, since I also see Dr. Sharfman, as a consulting oncologist to my doctor here at the Tunnell Cancer Center. When I first saw him back in May of 2013, following a wide area excision, sentinel lymph node biopsy, and left axillary lymph node dissection, he discussed interferon with me. I assume from your description that he also recommended Sylatron to you, as he did to me. He didn't push for it. He told me it was an option. He also told me that interferon was not found to extend life expectancy, he laid out the side effects, and said it was also perfectly acceptable if I chose just to be monitored.
I elected to try Sylatron, and got my first dose at the cancer center. Not only did it make me so sick I couldn't get out of bed for 36 hours, I didn't feel right for at least three weeks. The effects on my appetite and my mental state didn't fully disappear for probably 2-3 months. That one dose was all I took.
At this point the FDA has not ok'd Yervoy for adjuvant treatment, but eventually they may move in that direction, as there is some evidence coming in now that suggests it may be beneficial. Coming from someone who has been where you are now, I'd tell Dr. Sharfman that you do not want to do interferon. Hopefully you won't need Yervoy, but rest assured that if you get it as adjuvant treatment, or if you need it for a recurrence down the line, it is much more tolerable than interferon, with potential outcomes that are much more positive. My side effects were mainly an itchy rash, and I spent about a month with abdominal discomfort that caused me to be unable to each much of anything. Both of those were much more tolerable than that 36 hours of hell I endured after one shot of Sylatron.
I hope this helps you.
Bill
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- May 25, 2015 at 8:07 pm
Hi Courtney,
I apologize if I'm repeating what others here have said…I only skimmed the responses.
I'm hovering around stage IIIC. I say that because I did have a small lesion on one lung that did not light up on the PET scan, so I've never been definitively classified as stage IV. I have been treated with Yervoy, and have apparently had at least a partial response.
I wanted to add my voice, since I also see Dr. Sharfman, as a consulting oncologist to my doctor here at the Tunnell Cancer Center. When I first saw him back in May of 2013, following a wide area excision, sentinel lymph node biopsy, and left axillary lymph node dissection, he discussed interferon with me. I assume from your description that he also recommended Sylatron to you, as he did to me. He didn't push for it. He told me it was an option. He also told me that interferon was not found to extend life expectancy, he laid out the side effects, and said it was also perfectly acceptable if I chose just to be monitored.
I elected to try Sylatron, and got my first dose at the cancer center. Not only did it make me so sick I couldn't get out of bed for 36 hours, I didn't feel right for at least three weeks. The effects on my appetite and my mental state didn't fully disappear for probably 2-3 months. That one dose was all I took.
At this point the FDA has not ok'd Yervoy for adjuvant treatment, but eventually they may move in that direction, as there is some evidence coming in now that suggests it may be beneficial. Coming from someone who has been where you are now, I'd tell Dr. Sharfman that you do not want to do interferon. Hopefully you won't need Yervoy, but rest assured that if you get it as adjuvant treatment, or if you need it for a recurrence down the line, it is much more tolerable than interferon, with potential outcomes that are much more positive. My side effects were mainly an itchy rash, and I spent about a month with abdominal discomfort that caused me to be unable to each much of anything. Both of those were much more tolerable than that 36 hours of hell I endured after one shot of Sylatron.
I hope this helps you.
Bill
-
- May 25, 2015 at 8:07 pm
Hi Courtney,
I apologize if I'm repeating what others here have said…I only skimmed the responses.
I'm hovering around stage IIIC. I say that because I did have a small lesion on one lung that did not light up on the PET scan, so I've never been definitively classified as stage IV. I have been treated with Yervoy, and have apparently had at least a partial response.
I wanted to add my voice, since I also see Dr. Sharfman, as a consulting oncologist to my doctor here at the Tunnell Cancer Center. When I first saw him back in May of 2013, following a wide area excision, sentinel lymph node biopsy, and left axillary lymph node dissection, he discussed interferon with me. I assume from your description that he also recommended Sylatron to you, as he did to me. He didn't push for it. He told me it was an option. He also told me that interferon was not found to extend life expectancy, he laid out the side effects, and said it was also perfectly acceptable if I chose just to be monitored.
I elected to try Sylatron, and got my first dose at the cancer center. Not only did it make me so sick I couldn't get out of bed for 36 hours, I didn't feel right for at least three weeks. The effects on my appetite and my mental state didn't fully disappear for probably 2-3 months. That one dose was all I took.
At this point the FDA has not ok'd Yervoy for adjuvant treatment, but eventually they may move in that direction, as there is some evidence coming in now that suggests it may be beneficial. Coming from someone who has been where you are now, I'd tell Dr. Sharfman that you do not want to do interferon. Hopefully you won't need Yervoy, but rest assured that if you get it as adjuvant treatment, or if you need it for a recurrence down the line, it is much more tolerable than interferon, with potential outcomes that are much more positive. My side effects were mainly an itchy rash, and I spent about a month with abdominal discomfort that caused me to be unable to each much of anything. Both of those were much more tolerable than that 36 hours of hell I endured after one shot of Sylatron.
I hope this helps you.
Bill
-
- May 25, 2015 at 8:31 pm
I forgot to say in my post that when I originally saw Dr. Sharfman there were no clinical trials that I fit in. That's why I opted to try Sylatron, and why, when I decided to not continue it, I went with observation. When my disease came back last summer there were a number of trials, but still none that I fit in. That's why Dr. Sharfman originally suggested Sylatron to me. If there's a trial you fit in, go for it! 🙂
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- May 25, 2015 at 8:31 pm
I forgot to say in my post that when I originally saw Dr. Sharfman there were no clinical trials that I fit in. That's why I opted to try Sylatron, and why, when I decided to not continue it, I went with observation. When my disease came back last summer there were a number of trials, but still none that I fit in. That's why Dr. Sharfman originally suggested Sylatron to me. If there's a trial you fit in, go for it! 🙂
-
- May 25, 2015 at 8:31 pm
I forgot to say in my post that when I originally saw Dr. Sharfman there were no clinical trials that I fit in. That's why I opted to try Sylatron, and why, when I decided to not continue it, I went with observation. When my disease came back last summer there were a number of trials, but still none that I fit in. That's why Dr. Sharfman originally suggested Sylatron to me. If there's a trial you fit in, go for it! 🙂
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- May 26, 2015 at 6:03 am
Hi Courtney,
Go with your instincts and insist on a MRI of your brain now and in the future, if necessary. Headaches can be a sign that all is not right and my Mom's oncologist and neuro-oncologist ask her about this all the time. Surprisingly, she's had 25 brain tumors successfully treated with no issues 12 and 16 months out. She has not had one symptom, but I understand that many people who have brain mets have headaches and personality changes. – To ease your mind get one…
Melanoma is known to travel to the brain quite often and everyone at any advanced stage should have an MRI of the brain when the oncologist is staging and in follow-up visits, if there are symptoms and possibly at every checkup. – I don't know how often this is done with those who have a negative MRI brain scan the first time. So, I would ask your oncologist what typically happens and then ask another one…
I would also recommend making sure that your oncologist looks at the scans with you and that you seek a 2nd and/or 3rd opinion too. My Mom had 3 brain mets that were missed by the original radiologist and it was not until the 3rd melanoma specialist had his radiologist look at her original CD of her brain that we found out about the 3 tumors. (Still can't believe that!) By the time she had gamma knife radiation she had 9 brain mets, which was exactly 1 month from the original MRI's. – I always tell people that the doctor who looks at your CD's and goes over this with you is the guy or gal you want. They check everyone's work and this has literally saved my Mom's brain and her life.
The first radiologist who treated my Mom with gamma knife radiation did miss 1 brain met (he only treated 8 of 9). On her 30 day checkup the radiologists that checked her new brain MRI after gamma knife radiation said one was missed… We should have had a 3rd opinion then, but we didn't do anything because the radiologist who did the surgery said they guy was wrong… He wasn't and my Mom's new radiologists took care of that brain met and 16 others 4 months later. (Should have gone to him sooner!) – And she's fine, knock on wood and no one can quite believe all this and she acts like its a day in the park still.
Good luck and keep asking questions when you need to. You've gotten great advice here, take it.
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- May 26, 2015 at 6:03 am
Hi Courtney,
Go with your instincts and insist on a MRI of your brain now and in the future, if necessary. Headaches can be a sign that all is not right and my Mom's oncologist and neuro-oncologist ask her about this all the time. Surprisingly, she's had 25 brain tumors successfully treated with no issues 12 and 16 months out. She has not had one symptom, but I understand that many people who have brain mets have headaches and personality changes. – To ease your mind get one…
Melanoma is known to travel to the brain quite often and everyone at any advanced stage should have an MRI of the brain when the oncologist is staging and in follow-up visits, if there are symptoms and possibly at every checkup. – I don't know how often this is done with those who have a negative MRI brain scan the first time. So, I would ask your oncologist what typically happens and then ask another one…
I would also recommend making sure that your oncologist looks at the scans with you and that you seek a 2nd and/or 3rd opinion too. My Mom had 3 brain mets that were missed by the original radiologist and it was not until the 3rd melanoma specialist had his radiologist look at her original CD of her brain that we found out about the 3 tumors. (Still can't believe that!) By the time she had gamma knife radiation she had 9 brain mets, which was exactly 1 month from the original MRI's. – I always tell people that the doctor who looks at your CD's and goes over this with you is the guy or gal you want. They check everyone's work and this has literally saved my Mom's brain and her life.
The first radiologist who treated my Mom with gamma knife radiation did miss 1 brain met (he only treated 8 of 9). On her 30 day checkup the radiologists that checked her new brain MRI after gamma knife radiation said one was missed… We should have had a 3rd opinion then, but we didn't do anything because the radiologist who did the surgery said they guy was wrong… He wasn't and my Mom's new radiologists took care of that brain met and 16 others 4 months later. (Should have gone to him sooner!) – And she's fine, knock on wood and no one can quite believe all this and she acts like its a day in the park still.
Good luck and keep asking questions when you need to. You've gotten great advice here, take it.
-
- May 26, 2015 at 6:03 am
Hi Courtney,
Go with your instincts and insist on a MRI of your brain now and in the future, if necessary. Headaches can be a sign that all is not right and my Mom's oncologist and neuro-oncologist ask her about this all the time. Surprisingly, she's had 25 brain tumors successfully treated with no issues 12 and 16 months out. She has not had one symptom, but I understand that many people who have brain mets have headaches and personality changes. – To ease your mind get one…
Melanoma is known to travel to the brain quite often and everyone at any advanced stage should have an MRI of the brain when the oncologist is staging and in follow-up visits, if there are symptoms and possibly at every checkup. – I don't know how often this is done with those who have a negative MRI brain scan the first time. So, I would ask your oncologist what typically happens and then ask another one…
I would also recommend making sure that your oncologist looks at the scans with you and that you seek a 2nd and/or 3rd opinion too. My Mom had 3 brain mets that were missed by the original radiologist and it was not until the 3rd melanoma specialist had his radiologist look at her original CD of her brain that we found out about the 3 tumors. (Still can't believe that!) By the time she had gamma knife radiation she had 9 brain mets, which was exactly 1 month from the original MRI's. – I always tell people that the doctor who looks at your CD's and goes over this with you is the guy or gal you want. They check everyone's work and this has literally saved my Mom's brain and her life.
The first radiologist who treated my Mom with gamma knife radiation did miss 1 brain met (he only treated 8 of 9). On her 30 day checkup the radiologists that checked her new brain MRI after gamma knife radiation said one was missed… We should have had a 3rd opinion then, but we didn't do anything because the radiologist who did the surgery said they guy was wrong… He wasn't and my Mom's new radiologists took care of that brain met and 16 others 4 months later. (Should have gone to him sooner!) – And she's fine, knock on wood and no one can quite believe all this and she acts like its a day in the park still.
Good luck and keep asking questions when you need to. You've gotten great advice here, take it.
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- May 27, 2015 at 5:08 pm
Courtney,
You may want to check with UVA. I think they have a couple adjuvant trials with vaccines. I think they may have one that combines ipi and a vaccine. Let me know if you are interested and I'll send you some links and phone numbers.
I did interferon and like others would not recommend it if there are other options.
Good luck,
Brian
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- May 27, 2015 at 5:08 pm
Courtney,
You may want to check with UVA. I think they have a couple adjuvant trials with vaccines. I think they may have one that combines ipi and a vaccine. Let me know if you are interested and I'll send you some links and phone numbers.
I did interferon and like others would not recommend it if there are other options.
Good luck,
Brian
-
- May 27, 2015 at 5:08 pm
Courtney,
You may want to check with UVA. I think they have a couple adjuvant trials with vaccines. I think they may have one that combines ipi and a vaccine. Let me know if you are interested and I'll send you some links and phone numbers.
I did interferon and like others would not recommend it if there are other options.
Good luck,
Brian
-
- May 28, 2015 at 3:16 am
Hi Courtney,
I started Interferon treatment in March 2013. My 1st 4 treatments were at the cancer center but from week 5 I did them at home. The injection itself is not painful at all, a very small gauge needle. If you ask 10 people that have been down that road you would get 10 differnt responces because it seems to afect everyone differnt. Another man and I were in the treatment area and started week 1 together. As we progressed his only side affect was that he was tired. For me I suffered with the worst headaches I have ever had. They would last about 6 days after every treatment, just when I was feeling half way decent, it was time for the next treatment. This is a battle we are waging and battle is never easy. I only lasted 6 months because I developed interferon induced retinopathy, I had a blind spot in my left eye. The doctors were hopeful that it would correct itself, but it has not.
I hope you can find support as you go through this; family, friends your church. Good luck and God bless.
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- May 28, 2015 at 3:16 am
Hi Courtney,
I started Interferon treatment in March 2013. My 1st 4 treatments were at the cancer center but from week 5 I did them at home. The injection itself is not painful at all, a very small gauge needle. If you ask 10 people that have been down that road you would get 10 differnt responces because it seems to afect everyone differnt. Another man and I were in the treatment area and started week 1 together. As we progressed his only side affect was that he was tired. For me I suffered with the worst headaches I have ever had. They would last about 6 days after every treatment, just when I was feeling half way decent, it was time for the next treatment. This is a battle we are waging and battle is never easy. I only lasted 6 months because I developed interferon induced retinopathy, I had a blind spot in my left eye. The doctors were hopeful that it would correct itself, but it has not.
I hope you can find support as you go through this; family, friends your church. Good luck and God bless.
-
- May 28, 2015 at 3:16 am
Hi Courtney,
I started Interferon treatment in March 2013. My 1st 4 treatments were at the cancer center but from week 5 I did them at home. The injection itself is not painful at all, a very small gauge needle. If you ask 10 people that have been down that road you would get 10 differnt responces because it seems to afect everyone differnt. Another man and I were in the treatment area and started week 1 together. As we progressed his only side affect was that he was tired. For me I suffered with the worst headaches I have ever had. They would last about 6 days after every treatment, just when I was feeling half way decent, it was time for the next treatment. This is a battle we are waging and battle is never easy. I only lasted 6 months because I developed interferon induced retinopathy, I had a blind spot in my left eye. The doctors were hopeful that it would correct itself, but it has not.
I hope you can find support as you go through this; family, friends your church. Good luck and God bless.
-
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