Newly diagnosed Stage III – seeking advice what to do?

Hi Mark,

Sorry you are having to deal with this crappy cancer. I am stage IIIB and had similar choices to you. Back in December when I had to make my choice, there were no clical trials happening, so my options were Ipi or watch and wait.  I chose to do Ipi. My personal reasoning for that choice was due to my age and overall health. I am 29 and generally a healthy person. I figured if any side effects came up I would deal with them as they came. I did the four main doses at the adjuvant 10mg/kg without any major side effects. I will be doing the maintanence doses, next infusion is in May. The side effects I did experience and are still ongoing are fatigue, eczema flare ups (I have eczema already, so Ipi just made it extra hyped up), mildly itchy skin, joint pain (which is not new for me so feels similar to the eczema situation that it's being flared up by the Ipi) and dry eyes. All very manageable stuff. Others have had more serious side effects but have been dealt with and treated by their doctors. This choice isn't easy, we know. It's very personal and can feel very overwhelming. 

If I had the choice of a clinical trial I would have most likely gone with it. My reasoning on that is because being at stage 3, it feels easier to choose a trial, mostly because I feel like I've got time and health to contribute. It feels less scary and time sensitive than stage 4, if that makes sense. Interferon side effects, from what I have read, are kind of brutal and it's pretty obvious when someone goes on a trial like pembro vs. interferon which drug you're getting. You could always drop out of the trial if you feel you got interferon and don't want to put yourself through that. Or, you could travel to get the pembro vs. placebo, which I personally would rather do if I were to choose a trial. Placebo sounds scary, but at stage 3 that's basically saying pembro vs watch and wait, there's no difference between placebo and watch and wait. 

Those are my two cents, I know this is a crazy confusing time. I am sure you'll get some more good advice to help you decide. 

All the best,

Hi Mark,

Sorry you are having to deal with this crappy cancer. I am stage IIIB and had similar choices to you. Back in December when I had to make my choice, there were no clical trials happening, so my options were Ipi or watch and wait.  I chose to do Ipi. My personal reasoning for that choice was due to my age and overall health. I am 29 and generally a healthy person. I figured if any side effects came up I would deal with them as they came. I did the four main doses at the adjuvant 10mg/kg without any major side effects. I will be doing the maintanence doses, next infusion is in May. The side effects I did experience and are still ongoing are fatigue, eczema flare ups (I have eczema already, so Ipi just made it extra hyped up), mildly itchy skin, joint pain (which is not new for me so feels similar to the eczema situation that it's being flared up by the Ipi) and dry eyes. All very manageable stuff. Others have had more serious side effects but have been dealt with and treated by their doctors. This choice isn't easy, we know. It's very personal and can feel very overwhelming. 

If I had the choice of a clinical trial I would have most likely gone with it. My reasoning on that is because being at stage 3, it feels easier to choose a trial, mostly because I feel like I've got time and health to contribute. It feels less scary and time sensitive than stage 4, if that makes sense. Interferon side effects, from what I have read, are kind of brutal and it's pretty obvious when someone goes on a trial like pembro vs. interferon which drug you're getting. You could always drop out of the trial if you feel you got interferon and don't want to put yourself through that. Or, you could travel to get the pembro vs. placebo, which I personally would rather do if I were to choose a trial. Placebo sounds scary, but at stage 3 that's basically saying pembro vs watch and wait, there's no difference between placebo and watch and wait. 

Those are my two cents, I know this is a crazy confusing time. I am sure you'll get some more good advice to help you decide. 

All the best,

Hi Mark,

Sorry you are having to deal with this crappy cancer. I am stage IIIB and had similar choices to you. Back in December when I had to make my choice, there were no clical trials happening, so my options were Ipi or watch and wait.  I chose to do Ipi. My personal reasoning for that choice was due to my age and overall health. I am 29 and generally a healthy person. I figured if any side effects came up I would deal with them as they came. I did the four main doses at the adjuvant 10mg/kg without any major side effects. I will be doing the maintanence doses, next infusion is in May. The side effects I did experience and are still ongoing are fatigue, eczema flare ups (I have eczema already, so Ipi just made it extra hyped up), mildly itchy skin, joint pain (which is not new for me so feels similar to the eczema situation that it's being flared up by the Ipi) and dry eyes. All very manageable stuff. Others have had more serious side effects but have been dealt with and treated by their doctors. This choice isn't easy, we know. It's very personal and can feel very overwhelming. 

If I had the choice of a clinical trial I would have most likely gone with it. My reasoning on that is because being at stage 3, it feels easier to choose a trial, mostly because I feel like I've got time and health to contribute. It feels less scary and time sensitive than stage 4, if that makes sense. Interferon side effects, from what I have read, are kind of brutal and it's pretty obvious when someone goes on a trial like pembro vs. interferon which drug you're getting. You could always drop out of the trial if you feel you got interferon and don't want to put yourself through that. Or, you could travel to get the pembro vs. placebo, which I personally would rather do if I were to choose a trial. Placebo sounds scary, but at stage 3 that's basically saying pembro vs watch and wait, there's no difference between placebo and watch and wait. 

Those are my two cents, I know this is a crazy confusing time. I am sure you'll get some more good advice to help you decide. 

All the best,

Putting the side effects of Ipi into context

I am Stage 3C. I am too phobic of hospitals and doctors for surgery. I was therefore offered Ipi and took it.

I know Ipi can have bad side effects but I do think that the side-effects are much better managed by clinic teams now that Ipi is part of everyday treatment. I think that the 1% death figure that you mention is probably based on out-of-date figures. Most clinical teams would take patients off Ipi if they showed the signs of severe negative effects.

In the UK, the standard dosage of Ipi is 3mg/kg. Patients have four infusions at 3 week intervals. There are no maintenance doses.

I am considered to have had bad side effects. My pituitary gland no longer works and I need thyroxine and cortisol hormone replacement in the form of daily pills. However I was never admitted to hospital and I only missed a few days of work.

Your situation

1. You have no evidence of disease at the moment. You have no way of knowing if any therapy is working! You would still have to 'watch and wait'.

2. I am intrigued by your doctor's comment about imuunotherapies maybe requiring solid tumours to induce the desired effect in the body. One of my doctors commented that the positive effects of Ipi were better if the 'tumour burden is low'. Maybe there is a 'Goldilocks zone' for Ipi!

3. Ipi response rates are low. Historically 15%. Could be slightly higher now that more data is available.

4. I would not touch interferon with a bargepole. I want a decent quality of life while I am living with this disease.

5. With therapies moving on so fast, maybe, as you say, there would be something better in the future.

My attitude

I understand your desire for 'a cure'. Personally, I find the notion of a cure counterproductive. I think of melanoma like a war going on in my body. The good guys are my immune system. The bad guys are the melanoma cells. I only do things that have a good chance of (a) knocking off bad guys, (b) keeping the good guys in good shape and (c) not causing too much collateral damage. I also always consider my quality of life. Good time now is more valuble than good time later that may never arrive.

Putting the side effects of Ipi into context

I am Stage 3C. I am too phobic of hospitals and doctors for surgery. I was therefore offered Ipi and took it.

I know Ipi can have bad side effects but I do think that the side-effects are much better managed by clinic teams now that Ipi is part of everyday treatment. I think that the 1% death figure that you mention is probably based on out-of-date figures. Most clinical teams would take patients off Ipi if they showed the signs of severe negative effects.

In the UK, the standard dosage of Ipi is 3mg/kg. Patients have four infusions at 3 week intervals. There are no maintenance doses.

I am considered to have had bad side effects. My pituitary gland no longer works and I need thyroxine and cortisol hormone replacement in the form of daily pills. However I was never admitted to hospital and I only missed a few days of work.

Your situation

1. You have no evidence of disease at the moment. You have no way of knowing if any therapy is working! You would still have to 'watch and wait'.

2. I am intrigued by your doctor's comment about imuunotherapies maybe requiring solid tumours to induce the desired effect in the body. One of my doctors commented that the positive effects of Ipi were better if the 'tumour burden is low'. Maybe there is a 'Goldilocks zone' for Ipi!

3. Ipi response rates are low. Historically 15%. Could be slightly higher now that more data is available.

4. I would not touch interferon with a bargepole. I want a decent quality of life while I am living with this disease.

5. With therapies moving on so fast, maybe, as you say, there would be something better in the future.

My attitude

I understand your desire for 'a cure'. Personally, I find the notion of a cure counterproductive. I think of melanoma like a war going on in my body. The good guys are my immune system. The bad guys are the melanoma cells. I only do things that have a good chance of (a) knocking off bad guys, (b) keeping the good guys in good shape and (c) not causing too much collateral damage. I also always consider my quality of life. Good time now is more valuble than good time later that may never arrive.

Putting the side effects of Ipi into context

I am Stage 3C. I am too phobic of hospitals and doctors for surgery. I was therefore offered Ipi and took it.

I know Ipi can have bad side effects but I do think that the side-effects are much better managed by clinic teams now that Ipi is part of everyday treatment. I think that the 1% death figure that you mention is probably based on out-of-date figures. Most clinical teams would take patients off Ipi if they showed the signs of severe negative effects.

In the UK, the standard dosage of Ipi is 3mg/kg. Patients have four infusions at 3 week intervals. There are no maintenance doses.

I am considered to have had bad side effects. My pituitary gland no longer works and I need thyroxine and cortisol hormone replacement in the form of daily pills. However I was never admitted to hospital and I only missed a few days of work.

Your situation

1. You have no evidence of disease at the moment. You have no way of knowing if any therapy is working! You would still have to 'watch and wait'.

2. I am intrigued by your doctor's comment about imuunotherapies maybe requiring solid tumours to induce the desired effect in the body. One of my doctors commented that the positive effects of Ipi were better if the 'tumour burden is low'. Maybe there is a 'Goldilocks zone' for Ipi!

3. Ipi response rates are low. Historically 15%. Could be slightly higher now that more data is available.

4. I would not touch interferon with a bargepole. I want a decent quality of life while I am living with this disease.

5. With therapies moving on so fast, maybe, as you say, there would be something better in the future.

My attitude

I understand your desire for 'a cure'. Personally, I find the notion of a cure counterproductive. I think of melanoma like a war going on in my body. The good guys are my immune system. The bad guys are the melanoma cells. I only do things that have a good chance of (a) knocking off bad guys, (b) keeping the good guys in good shape and (c) not causing too much collateral damage. I also always consider my quality of life. Good time now is more valuble than good time later that may never arrive.

Mark – sorry to hear of this struggle, I know it's a tough spot to be in.

I've read the other very thoughtful responses and the only thing I have to add it is the experience my wife has had over the past 15 months.

She's diagnosed with mucosal melanoma, which behaves differently and recurs at different rates than cutaneous, so please take that into account when reading my comments.

She's 47 and we have a 1st grader, and knowing the recurrence rates and OS (5-yr estimates are mostly around 20%, but that was before immunotherapy) – so she wanted to 'be agressive' and did an adjuvant therapy that involved chemo (cisplatin and temodar).  It was very hard on her and took 6-months to feel normal again afterward.  There was not an adjuvant option for ipi to us when we were deciding.

There was 1 study to support use of chemo(a phase ii clinical trial). At this point, now that he cancer has distant recurrence, she feels like the chemo probably did little or nothing (of course, who knows, maybe it bought her 12 months?) But now she's feeling run down and not really wanting to do the Ipi-Nivo combo, but that's the one that has data to support it's efficacy!

So, bottom line is I guess I'd wonder what data there are to support use of Ipi as adjuvant therapy. If none, then I might want until it is warranted to use it as it's currently approved.

Of course, we made a different decision, and that one might have paid off in other circumstances, you just never know. We asked 6 docs and 2 said don't do the chemo (wait and use Ipi-Nivo if it recurs), 2 said do it (why not, it might give you a few % better chance), and 2 said they could be convinced either way – we even convinced one of them during our visit by siting data.  

The point is that when there's a lack of data, you can't make a 'right' or 'wrong' decision, there are often very good reasons to do either, and in our case at least, it was my wife's decision in the end since no one else to take the therapy for her.

I know you'll come to some clarity around this and find the right answer for you. Good luck-

Mark – sorry to hear of this struggle, I know it's a tough spot to be in.

I've read the other very thoughtful responses and the only thing I have to add it is the experience my wife has had over the past 15 months.

She's diagnosed with mucosal melanoma, which behaves differently and recurs at different rates than cutaneous, so please take that into account when reading my comments.

She's 47 and we have a 1st grader, and knowing the recurrence rates and OS (5-yr estimates are mostly around 20%, but that was before immunotherapy) – so she wanted to 'be agressive' and did an adjuvant therapy that involved chemo (cisplatin and temodar).  It was very hard on her and took 6-months to feel normal again afterward.  There was not an adjuvant option for ipi to us when we were deciding.

There was 1 study to support use of chemo(a phase ii clinical trial). At this point, now that he cancer has distant recurrence, she feels like the chemo probably did little or nothing (of course, who knows, maybe it bought her 12 months?) But now she's feeling run down and not really wanting to do the Ipi-Nivo combo, but that's the one that has data to support it's efficacy!

So, bottom line is I guess I'd wonder what data there are to support use of Ipi as adjuvant therapy. If none, then I might want until it is warranted to use it as it's currently approved.

Of course, we made a different decision, and that one might have paid off in other circumstances, you just never know. We asked 6 docs and 2 said don't do the chemo (wait and use Ipi-Nivo if it recurs), 2 said do it (why not, it might give you a few % better chance), and 2 said they could be convinced either way – we even convinced one of them during our visit by siting data.  

The point is that when there's a lack of data, you can't make a 'right' or 'wrong' decision, there are often very good reasons to do either, and in our case at least, it was my wife's decision in the end since no one else to take the therapy for her.

I know you'll come to some clarity around this and find the right answer for you. Good luck-

Mark – sorry to hear of this struggle, I know it's a tough spot to be in.

I've read the other very thoughtful responses and the only thing I have to add it is the experience my wife has had over the past 15 months.

She's diagnosed with mucosal melanoma, which behaves differently and recurs at different rates than cutaneous, so please take that into account when reading my comments.

She's 47 and we have a 1st grader, and knowing the recurrence rates and OS (5-yr estimates are mostly around 20%, but that was before immunotherapy) – so she wanted to 'be agressive' and did an adjuvant therapy that involved chemo (cisplatin and temodar).  It was very hard on her and took 6-months to feel normal again afterward.  There was not an adjuvant option for ipi to us when we were deciding.

There was 1 study to support use of chemo(a phase ii clinical trial). At this point, now that he cancer has distant recurrence, she feels like the chemo probably did little or nothing (of course, who knows, maybe it bought her 12 months?) But now she's feeling run down and not really wanting to do the Ipi-Nivo combo, but that's the one that has data to support it's efficacy!

So, bottom line is I guess I'd wonder what data there are to support use of Ipi as adjuvant therapy. If none, then I might want until it is warranted to use it as it's currently approved.

Of course, we made a different decision, and that one might have paid off in other circumstances, you just never know. We asked 6 docs and 2 said don't do the chemo (wait and use Ipi-Nivo if it recurs), 2 said do it (why not, it might give you a few % better chance), and 2 said they could be convinced either way – we even convinced one of them during our visit by siting data.  

The point is that when there's a lack of data, you can't make a 'right' or 'wrong' decision, there are often very good reasons to do either, and in our case at least, it was my wife's decision in the end since no one else to take the therapy for her.

I know you'll come to some clarity around this and find the right answer for you. Good luck-

Hi

I am almost in the same situation as you. I am home recovering from a lymph node dissection on my groin. Right now I am wondering if I am ever going to feel normal again. I had an inginual node test positive for melanoma after being on scans for about a year. The surgeon said everything looked fine but I am waiting for the pathology report. Yes I am a nervouse wreck. I am not sure what will be offered as the next treatment as my Pet/CT scan was clear. I am not looking forward to any of this.

 

Thanks again to everyone posting its a lot of info to take in!

 

Hi

I am almost in the same situation as you. I am home recovering from a lymph node dissection on my groin. Right now I am wondering if I am ever going to feel normal again. I had an inginual node test positive for melanoma after being on scans for about a year. The surgeon said everything looked fine but I am waiting for the pathology report. Yes I am a nervouse wreck. I am not sure what will be offered as the next treatment as my Pet/CT scan was clear. I am not looking forward to any of this.

 

Thanks again to everyone posting its a lot of info to take in!

 

Hi

I am almost in the same situation as you. I am home recovering from a lymph node dissection on my groin. Right now I am wondering if I am ever going to feel normal again. I had an inginual node test positive for melanoma after being on scans for about a year. The surgeon said everything looked fine but I am waiting for the pathology report. Yes I am a nervouse wreck. I am not sure what will be offered as the next treatment as my Pet/CT scan was clear. I am not looking forward to any of this.

 

Thanks again to everyone posting its a lot of info to take in!

 

Thank you for all of the information.  Mark I appreciate your spelling things out so clearly, am wishing the best for you and will be following your posts.

 My journey has just begun, I had a primary site on my neck in Nov 2015, noticed a swollen lymph node on my neck this March which was biopsied and is positive for melanoma.  I am getting MRI brain, CT neck, chest and abd in a few days then will be going to meet the team at the University of Michigan melanoma clinic.  I am trying to get educated before my visit.  I know that I am currently a stage lllB and hopefully will not be anything other than that after the scans and surgery.

I would love to hear from anyone that has gone to U of M, also anyone who has had the neck dissection.

Thanks for all of the support.  It makes a huge difference.

Peggy

Thank you for all of the information.  Mark I appreciate your spelling things out so clearly, am wishing the best for you and will be following your posts.

 My journey has just begun, I had a primary site on my neck in Nov 2015, noticed a swollen lymph node on my neck this March which was biopsied and is positive for melanoma.  I am getting MRI brain, CT neck, chest and abd in a few days then will be going to meet the team at the University of Michigan melanoma clinic.  I am trying to get educated before my visit.  I know that I am currently a stage lllB and hopefully will not be anything other than that after the scans and surgery.

I would love to hear from anyone that has gone to U of M, also anyone who has had the neck dissection.

Thanks for all of the support.  It makes a huge difference.

Peggy

Thank you for all of the information.  Mark I appreciate your spelling things out so clearly, am wishing the best for you and will be following your posts.

 My journey has just begun, I had a primary site on my neck in Nov 2015, noticed a swollen lymph node on my neck this March which was biopsied and is positive for melanoma.  I am getting MRI brain, CT neck, chest and abd in a few days then will be going to meet the team at the University of Michigan melanoma clinic.  I am trying to get educated before my visit.  I know that I am currently a stage lllB and hopefully will not be anything other than that after the scans and surgery.

I would love to hear from anyone that has gone to U of M, also anyone who has had the neck dissection.

Thanks for all of the support.  It makes a huge difference.

Peggy

Hi Mark,

Sorry you have joined our club.  You have had many detailed and thoughtful answers to your question of which treatment option to go for at this stage.  My answer is simple.  Try the ipi therapy and don't worry about the side-effects.  Cross that bridge when you get there, and you may not need to.  Everyone responds differently and the assumption of adverse effects does no good.  The mind is a powerful thing.  Its the reason they have a placebo group in many trials. Compared to the options you are considering, I'll join others here in thinking Yervoy is the obvious choice.  Best to you in whatever your personal decision is.

Gary

Hi Mark,

Sorry you have joined our club.  You have had many detailed and thoughtful answers to your question of which treatment option to go for at this stage.  My answer is simple.  Try the ipi therapy and don't worry about the side-effects.  Cross that bridge when you get there, and you may not need to.  Everyone responds differently and the assumption of adverse effects does no good.  The mind is a powerful thing.  Its the reason they have a placebo group in many trials. Compared to the options you are considering, I'll join others here in thinking Yervoy is the obvious choice.  Best to you in whatever your personal decision is.

Gary

Hi Mark,

Sorry you have joined our club.  You have had many detailed and thoughtful answers to your question of which treatment option to go for at this stage.  My answer is simple.  Try the ipi therapy and don't worry about the side-effects.  Cross that bridge when you get there, and you may not need to.  Everyone responds differently and the assumption of adverse effects does no good.  The mind is a powerful thing.  Its the reason they have a placebo group in many trials. Compared to the options you are considering, I'll join others here in thinking Yervoy is the obvious choice.  Best to you in whatever your personal decision is.

Gary

My dad was diagnosed with Stage 3C back in December. He chose to go with the Yervoy. After two infusions he had a spiking fever of 104 then his liver enzymes went up by 10 times normal range. This was a severe reaction. They put him on steroids and within a week the enzymes were back to normal. Not a big deal at all. Even with enzymes that high he did not feel unwell at all. Actually he felt great once the fever went down. So even with severe side effects they are so good at controlling it now and knowing what to do, that there is actually probably little worry. He had to discontinue treatment which was unfortunate, but we feel at least he got 2 infusions. Better than nothing if he is a responder. If he could do it all over again, he would not change a thing.

Just wanted to let you know about someone who had some serious side effects but still managed them really well. Best of luck to you!

Annie

My dad was diagnosed with Stage 3C back in December. He chose to go with the Yervoy. After two infusions he had a spiking fever of 104 then his liver enzymes went up by 10 times normal range. This was a severe reaction. They put him on steroids and within a week the enzymes were back to normal. Not a big deal at all. Even with enzymes that high he did not feel unwell at all. Actually he felt great once the fever went down. So even with severe side effects they are so good at controlling it now and knowing what to do, that there is actually probably little worry. He had to discontinue treatment which was unfortunate, but we feel at least he got 2 infusions. Better than nothing if he is a responder. If he could do it all over again, he would not change a thing.

Just wanted to let you know about someone who had some serious side effects but still managed them really well. Best of luck to you!

Annie

My dad was diagnosed with Stage 3C back in December. He chose to go with the Yervoy. After two infusions he had a spiking fever of 104 then his liver enzymes went up by 10 times normal range. This was a severe reaction. They put him on steroids and within a week the enzymes were back to normal. Not a big deal at all. Even with enzymes that high he did not feel unwell at all. Actually he felt great once the fever went down. So even with severe side effects they are so good at controlling it now and knowing what to do, that there is actually probably little worry. He had to discontinue treatment which was unfortunate, but we feel at least he got 2 infusions. Better than nothing if he is a responder. If he could do it all over again, he would not change a thing.

Just wanted to let you know about someone who had some serious side effects but still managed them really well. Best of luck to you!

Annie

Hello Mark!

I am 3b (T3bN2aM0), diagnosed at age 46 in 2000, primary on right lower leg, 2 positive lymph nodes in my right groin. All my groin lymph nodes were removed at the same time of the wide excision on my lower leg. I never did any scans at that time, just CXR and labs. The only treatment offered was interferon, I managed to do 8 doses and called it quits. So I guess I am in the wait and watch group. So fast forward 15 years. I still worry, but I don't let it affect my life. I do still see an oncologist about once a year. I did get a PET scan about 6 years ago just to ease my mind, it was completely negative. My post today is just to let you know that stage 3 does not necessarily progress to stage 4. I am sending positive thoughts to you and your family.

Cynthia

Hello Mark!

I am 3b (T3bN2aM0), diagnosed at age 46 in 2000, primary on right lower leg, 2 positive lymph nodes in my right groin. All my groin lymph nodes were removed at the same time of the wide excision on my lower leg. I never did any scans at that time, just CXR and labs. The only treatment offered was interferon, I managed to do 8 doses and called it quits. So I guess I am in the wait and watch group. So fast forward 15 years. I still worry, but I don't let it affect my life. I do still see an oncologist about once a year. I did get a PET scan about 6 years ago just to ease my mind, it was completely negative. My post today is just to let you know that stage 3 does not necessarily progress to stage 4. I am sending positive thoughts to you and your family.

Cynthia

Hello Mark!

I am 3b (T3bN2aM0), diagnosed at age 46 in 2000, primary on right lower leg, 2 positive lymph nodes in my right groin. All my groin lymph nodes were removed at the same time of the wide excision on my lower leg. I never did any scans at that time, just CXR and labs. The only treatment offered was interferon, I managed to do 8 doses and called it quits. So I guess I am in the wait and watch group. So fast forward 15 years. I still worry, but I don't let it affect my life. I do still see an oncologist about once a year. I did get a PET scan about 6 years ago just to ease my mind, it was completely negative. My post today is just to let you know that stage 3 does not necessarily progress to stage 4. I am sending positive thoughts to you and your family.

Cynthia

Hello Mark! Welcome! Everyone here is fantastic, and it seems as though you’ve already done a ton of research. I’ve been pondering on your situation, as I’m IIIC, but on a different path. Even though I’m only stage III, I’ll be starting the Ipi/nivo treatment the end of this week. I have had multiple in-transits, and one presently growing, so my doctor is allowing me to go to the next stage treatment.

I have also tried interferon and it’s NOT easy. I got through 7 treatments before I had to start skipping doses due to my liver enzymes skyrocketing. Not to mention how crappy I felt. While on interferon, I had my most recent in-transit pop up…so in my mind, it didn’t do its job.

But your situation is a bit different. You haven’t had anything positive from your SLN biopsies, which is great news! I know you want to treat this beast, but with nothing in your SLN, I’d err on the side of caution. A SLNB isn’t foolproof, but you’ve had 2 now with both being negative. Again, a very good sign that it hasn’t traveled too far.

You keep mentioning your job, which you seem to love. Treatment via trial will definitely keep you from traveling for work. And trials are a TON of time and energy and money. The trial you mention that involves a placebo – why take off work to watch and wait? You can do that while doing what you love. So I’d say don’t do that trial. The one close by, youll KNOW if youre in the interferon segment. It may, if anything, delay a recurrence. But again, you won’t be able to work.

So then the question is will you be able to sleep at night if you DON’T do anything? What’s your level of anxiety about watching and waiting? I think that’s the big question. You may be able to work while on Ipi (not sure on this one) and do what you love while getting treatment. If you cant sleep at night knowing you’re not getting treatment, then definitely do the Ipi. Any side effects are minimal compared to peace of mind. On the other hand, if you’re ok with watching, then wait. I know it seems like a cop-out to wait, but treatments are changing and getting better constantly.

None of these decisions are easy to make, but nothing you choose is right or wrong. So you absolutely have to chose what’s right for YOU. The best piece of advice I’ve gotten is to believe in your medicine, whatever that may be. So chose what you can stand behind. I swear, most days cancer is more a mental battle than a physical one.

Keep us updated and the best of luck to you!!
Lauren

Hello Mark! Welcome! Everyone here is fantastic, and it seems as though you’ve already done a ton of research. I’ve been pondering on your situation, as I’m IIIC, but on a different path. Even though I’m only stage III, I’ll be starting the Ipi/nivo treatment the end of this week. I have had multiple in-transits, and one presently growing, so my doctor is allowing me to go to the next stage treatment.

I have also tried interferon and it’s NOT easy. I got through 7 treatments before I had to start skipping doses due to my liver enzymes skyrocketing. Not to mention how crappy I felt. While on interferon, I had my most recent in-transit pop up…so in my mind, it didn’t do its job.

But your situation is a bit different. You haven’t had anything positive from your SLN biopsies, which is great news! I know you want to treat this beast, but with nothing in your SLN, I’d err on the side of caution. A SLNB isn’t foolproof, but you’ve had 2 now with both being negative. Again, a very good sign that it hasn’t traveled too far.

You keep mentioning your job, which you seem to love. Treatment via trial will definitely keep you from traveling for work. And trials are a TON of time and energy and money. The trial you mention that involves a placebo – why take off work to watch and wait? You can do that while doing what you love. So I’d say don’t do that trial. The one close by, youll KNOW if youre in the interferon segment. It may, if anything, delay a recurrence. But again, you won’t be able to work.

So then the question is will you be able to sleep at night if you DON’T do anything? What’s your level of anxiety about watching and waiting? I think that’s the big question. You may be able to work while on Ipi (not sure on this one) and do what you love while getting treatment. If you cant sleep at night knowing you’re not getting treatment, then definitely do the Ipi. Any side effects are minimal compared to peace of mind. On the other hand, if you’re ok with watching, then wait. I know it seems like a cop-out to wait, but treatments are changing and getting better constantly.

None of these decisions are easy to make, but nothing you choose is right or wrong. So you absolutely have to chose what’s right for YOU. The best piece of advice I’ve gotten is to believe in your medicine, whatever that may be. So chose what you can stand behind. I swear, most days cancer is more a mental battle than a physical one.

Keep us updated and the best of luck to you!!
Lauren

Hello Mark! Welcome! Everyone here is fantastic, and it seems as though you’ve already done a ton of research. I’ve been pondering on your situation, as I’m IIIC, but on a different path. Even though I’m only stage III, I’ll be starting the Ipi/nivo treatment the end of this week. I have had multiple in-transits, and one presently growing, so my doctor is allowing me to go to the next stage treatment.

I have also tried interferon and it’s NOT easy. I got through 7 treatments before I had to start skipping doses due to my liver enzymes skyrocketing. Not to mention how crappy I felt. While on interferon, I had my most recent in-transit pop up…so in my mind, it didn’t do its job.

But your situation is a bit different. You haven’t had anything positive from your SLN biopsies, which is great news! I know you want to treat this beast, but with nothing in your SLN, I’d err on the side of caution. A SLNB isn’t foolproof, but you’ve had 2 now with both being negative. Again, a very good sign that it hasn’t traveled too far.

You keep mentioning your job, which you seem to love. Treatment via trial will definitely keep you from traveling for work. And trials are a TON of time and energy and money. The trial you mention that involves a placebo – why take off work to watch and wait? You can do that while doing what you love. So I’d say don’t do that trial. The one close by, youll KNOW if youre in the interferon segment. It may, if anything, delay a recurrence. But again, you won’t be able to work.

So then the question is will you be able to sleep at night if you DON’T do anything? What’s your level of anxiety about watching and waiting? I think that’s the big question. You may be able to work while on Ipi (not sure on this one) and do what you love while getting treatment. If you cant sleep at night knowing you’re not getting treatment, then definitely do the Ipi. Any side effects are minimal compared to peace of mind. On the other hand, if you’re ok with watching, then wait. I know it seems like a cop-out to wait, but treatments are changing and getting better constantly.

None of these decisions are easy to make, but nothing you choose is right or wrong. So you absolutely have to chose what’s right for YOU. The best piece of advice I’ve gotten is to believe in your medicine, whatever that may be. So chose what you can stand behind. I swear, most days cancer is more a mental battle than a physical one.

Keep us updated and the best of luck to you!!
Lauren