Waiting on my oncology consult…

Jennifer, firstly I'm so sorry that your world has been turned upside down like this… melanoma is such a total shock, it's hard to believe that some little fleck on your skin can cause this huge upheaval and mental / physical pain. The good news is, this board is THE BEST. You will find advice here from other people in your shoes, all willing and wanting to be a helping hand/shoulder to cry on. It's a scary diagnosis and I remember just recently reading a thread on hear about stage III being a kind of twilight zone where you can't always access immunotherapies and often watch and wait. I think the user is Celeste/Bubbles and she is truly a fountain of knowledge on this. I'm fortunate to have only had thin melanomas (stage 1) but I've had three of them which is stressful. That's something for you to be aware of, perhaps. Now that you have had one, you many find yourself facing another at some stage. That said, people who have had melanoma get so vigilant with skin checks that the second is usually found early and thin. All the best and you have found the right spot for advice and support.

Jennifer, firstly I'm so sorry that your world has been turned upside down like this… melanoma is such a total shock, it's hard to believe that some little fleck on your skin can cause this huge upheaval and mental / physical pain. The good news is, this board is THE BEST. You will find advice here from other people in your shoes, all willing and wanting to be a helping hand/shoulder to cry on. It's a scary diagnosis and I remember just recently reading a thread on hear about stage III being a kind of twilight zone where you can't always access immunotherapies and often watch and wait. I think the user is Celeste/Bubbles and she is truly a fountain of knowledge on this. I'm fortunate to have only had thin melanomas (stage 1) but I've had three of them which is stressful. That's something for you to be aware of, perhaps. Now that you have had one, you many find yourself facing another at some stage. That said, people who have had melanoma get so vigilant with skin checks that the second is usually found early and thin. All the best and you have found the right spot for advice and support.

Jennifer, firstly I'm so sorry that your world has been turned upside down like this… melanoma is such a total shock, it's hard to believe that some little fleck on your skin can cause this huge upheaval and mental / physical pain. The good news is, this board is THE BEST. You will find advice here from other people in your shoes, all willing and wanting to be a helping hand/shoulder to cry on. It's a scary diagnosis and I remember just recently reading a thread on hear about stage III being a kind of twilight zone where you can't always access immunotherapies and often watch and wait. I think the user is Celeste/Bubbles and she is truly a fountain of knowledge on this. I'm fortunate to have only had thin melanomas (stage 1) but I've had three of them which is stressful. That's something for you to be aware of, perhaps. Now that you have had one, you many find yourself facing another at some stage. That said, people who have had melanoma get so vigilant with skin checks that the second is usually found early and thin. All the best and you have found the right spot for advice and support.

I am in the UK, so I am not the best person to give advice on treatment options in the US. However, I read your post last night and it was one of those that stuck in my brain, so I have decided to post a reply.

Hopefully others who are more familar with the complexities of the US system will point you in the best direction for your research.

However, one of your options will be what is often called 'watch and wait'. This is where you don't have any more treatment but you follow your doctor's advice about monitoring your health (for example examinations and scans) in case some melanoma cells slipped past your last lot of treatment (in your case, the surgery).

I think 'watch and wait' is a misleading description. It should be 'live your life while getting yourself super-healthy so that your immune system is in the best possible state to seek out and eliminate melanoma cells'.

Also treatments for melanoma are evolving very quickly. In the UK, two 'new' treatments (both immunotherapies) have been approved for general use since I was diagnosed in February 2015. So while you 'live your life while getting yourself super-healthy so that your immune system is in the best possible state to seek out and eliminate melanoma cells' an even more effective treatment might be approved for use in the USA.

My last treatment (15 months ago) was the immunotherapy ipilimumab (trade name Yervoy, often called 'ipi'). If ipi works (it does in about 15% of people) it fires up the person's immune system to eliminate the melanoma cells. I was one of the lucky ones. I had tumours, Ipi worked and my tumours shrank so much that they are undetectable. So now I am like you, NED (no evidence of disease) but with that thought in the back of my mind that a few melanoma cells may have escaped and be lurking. That thought very much comes to the front of my mind when I go for a scan!

So I am doing the 'living my life' option. I do not see it as the 'watch and wait' option.

I can tell from your post that you will make the 'right' decision about treatment. (The 'right' decision is the one that is best for you and your family and it varies a lot from person to person.) 

All the best to you and your family.

I am in the UK, so I am not the best person to give advice on treatment options in the US. However, I read your post last night and it was one of those that stuck in my brain, so I have decided to post a reply.

Hopefully others who are more familar with the complexities of the US system will point you in the best direction for your research.

However, one of your options will be what is often called 'watch and wait'. This is where you don't have any more treatment but you follow your doctor's advice about monitoring your health (for example examinations and scans) in case some melanoma cells slipped past your last lot of treatment (in your case, the surgery).

I think 'watch and wait' is a misleading description. It should be 'live your life while getting yourself super-healthy so that your immune system is in the best possible state to seek out and eliminate melanoma cells'.

Also treatments for melanoma are evolving very quickly. In the UK, two 'new' treatments (both immunotherapies) have been approved for general use since I was diagnosed in February 2015. So while you 'live your life while getting yourself super-healthy so that your immune system is in the best possible state to seek out and eliminate melanoma cells' an even more effective treatment might be approved for use in the USA.

My last treatment (15 months ago) was the immunotherapy ipilimumab (trade name Yervoy, often called 'ipi'). If ipi works (it does in about 15% of people) it fires up the person's immune system to eliminate the melanoma cells. I was one of the lucky ones. I had tumours, Ipi worked and my tumours shrank so much that they are undetectable. So now I am like you, NED (no evidence of disease) but with that thought in the back of my mind that a few melanoma cells may have escaped and be lurking. That thought very much comes to the front of my mind when I go for a scan!

So I am doing the 'living my life' option. I do not see it as the 'watch and wait' option.

I can tell from your post that you will make the 'right' decision about treatment. (The 'right' decision is the one that is best for you and your family and it varies a lot from person to person.) 

All the best to you and your family.

I am in the UK, so I am not the best person to give advice on treatment options in the US. However, I read your post last night and it was one of those that stuck in my brain, so I have decided to post a reply.

Hopefully others who are more familar with the complexities of the US system will point you in the best direction for your research.

However, one of your options will be what is often called 'watch and wait'. This is where you don't have any more treatment but you follow your doctor's advice about monitoring your health (for example examinations and scans) in case some melanoma cells slipped past your last lot of treatment (in your case, the surgery).

I think 'watch and wait' is a misleading description. It should be 'live your life while getting yourself super-healthy so that your immune system is in the best possible state to seek out and eliminate melanoma cells'.

Also treatments for melanoma are evolving very quickly. In the UK, two 'new' treatments (both immunotherapies) have been approved for general use since I was diagnosed in February 2015. So while you 'live your life while getting yourself super-healthy so that your immune system is in the best possible state to seek out and eliminate melanoma cells' an even more effective treatment might be approved for use in the USA.

My last treatment (15 months ago) was the immunotherapy ipilimumab (trade name Yervoy, often called 'ipi'). If ipi works (it does in about 15% of people) it fires up the person's immune system to eliminate the melanoma cells. I was one of the lucky ones. I had tumours, Ipi worked and my tumours shrank so much that they are undetectable. So now I am like you, NED (no evidence of disease) but with that thought in the back of my mind that a few melanoma cells may have escaped and be lurking. That thought very much comes to the front of my mind when I go for a scan!

So I am doing the 'living my life' option. I do not see it as the 'watch and wait' option.

I can tell from your post that you will make the 'right' decision about treatment. (The 'right' decision is the one that is best for you and your family and it varies a lot from person to person.) 

All the best to you and your family.

Jennifer:

I am sorry to hear of your diagnosis. I am glad that you followed up on the mole and caught it while still Stage III.

Patients who are diagnosed Stage I or Stage II are generally released with no follow up except very regular skin exams. Patients who are Stage IV engage in a course of treatment to try to kill the cancer cells that have spread to other organs.

You are in that in-between group. Until recently the two options were observation (regular skin exams to see if anything shows up) or Interferon, a one-year course of treatment that has marginal benefit in reducing the likelihood of recurrence. But melanoma treatment has changed radically in the past 5 years, with a dozen new therapies being approved after a drought of more than 13 years with no new drugs.

Recently one of the new drugs was also approved for adjuvant therapy. (Therapy for people who have had their cancer removed but are concerned about it coming back.) The news on this drug is mixed, however. It is much better than Interferon, but it also has much more serious side effects.

New data was presented at a recent cancer meeting in Copenhagen and the researcher said that this drug, Yervoy or ipilimumab, should only be used for Stage IIIc or other patients with high risk of recurrence, and should only be given by doctors with a lot of experience using the drug. I have known patients who took "ipi" and had no problems at all. I have known others who had a rough time.

The other option is to look for a clinical trial that is open for the adjuvant setting. Some of the other new drugs have fewer side effects and are also being studied for use in adjuvant patients. 

When you see your oncologist ask them about these options and ask for the data. Then do your homework and decide what is best for you.

If you have questions feel free to contact me.

Tim–MRF

Jennifer:

I am sorry to hear of your diagnosis. I am glad that you followed up on the mole and caught it while still Stage III.

Patients who are diagnosed Stage I or Stage II are generally released with no follow up except very regular skin exams. Patients who are Stage IV engage in a course of treatment to try to kill the cancer cells that have spread to other organs.

You are in that in-between group. Until recently the two options were observation (regular skin exams to see if anything shows up) or Interferon, a one-year course of treatment that has marginal benefit in reducing the likelihood of recurrence. But melanoma treatment has changed radically in the past 5 years, with a dozen new therapies being approved after a drought of more than 13 years with no new drugs.

Recently one of the new drugs was also approved for adjuvant therapy. (Therapy for people who have had their cancer removed but are concerned about it coming back.) The news on this drug is mixed, however. It is much better than Interferon, but it also has much more serious side effects.

New data was presented at a recent cancer meeting in Copenhagen and the researcher said that this drug, Yervoy or ipilimumab, should only be used for Stage IIIc or other patients with high risk of recurrence, and should only be given by doctors with a lot of experience using the drug. I have known patients who took "ipi" and had no problems at all. I have known others who had a rough time.

The other option is to look for a clinical trial that is open for the adjuvant setting. Some of the other new drugs have fewer side effects and are also being studied for use in adjuvant patients. 

When you see your oncologist ask them about these options and ask for the data. Then do your homework and decide what is best for you.

If you have questions feel free to contact me.

Tim–MRF

Jennifer:

I am sorry to hear of your diagnosis. I am glad that you followed up on the mole and caught it while still Stage III.

Patients who are diagnosed Stage I or Stage II are generally released with no follow up except very regular skin exams. Patients who are Stage IV engage in a course of treatment to try to kill the cancer cells that have spread to other organs.

You are in that in-between group. Until recently the two options were observation (regular skin exams to see if anything shows up) or Interferon, a one-year course of treatment that has marginal benefit in reducing the likelihood of recurrence. But melanoma treatment has changed radically in the past 5 years, with a dozen new therapies being approved after a drought of more than 13 years with no new drugs.

Recently one of the new drugs was also approved for adjuvant therapy. (Therapy for people who have had their cancer removed but are concerned about it coming back.) The news on this drug is mixed, however. It is much better than Interferon, but it also has much more serious side effects.

New data was presented at a recent cancer meeting in Copenhagen and the researcher said that this drug, Yervoy or ipilimumab, should only be used for Stage IIIc or other patients with high risk of recurrence, and should only be given by doctors with a lot of experience using the drug. I have known patients who took "ipi" and had no problems at all. I have known others who had a rough time.

The other option is to look for a clinical trial that is open for the adjuvant setting. Some of the other new drugs have fewer side effects and are also being studied for use in adjuvant patients. 

When you see your oncologist ask them about these options and ask for the data. Then do your homework and decide what is best for you.

If you have questions feel free to contact me.

Tim–MRF