lilred75

Thank you all for so much love and support! Well, my week has been a bit unusual. My dr appt. was rescheduled for Wednesday because my doctor was out sick. But I spoke with the nurse and she told me that it appeared my scan results showed no change and no abnormal results, so all appears to be good! I will get the official report Wednesday from my doctor, but it seems all is well on the "interior:. However, I got a call today from my derm dr, and a mole she removed last week came back as melanoma stage 1. Very thin, no node involvement, and has no affect on my "status" or life longevity. I just need to have the margins cleared, and that is that…but now I wonder…can I still be considered NED since October 2007? It hasn't reoccurred internally…aw screw it! I can make my own rules and I say I am still NED! 🙂

Thank you all for so much love and support! Well, my week has been a bit unusual. My dr appt. was rescheduled for Wednesday because my doctor was out sick. But I spoke with the nurse and she told me that it appeared my scan results showed no change and no abnormal results, so all appears to be good! I will get the official report Wednesday from my doctor, but it seems all is well on the "interior:. However, I got a call today from my derm dr, and a mole she removed last week came back as melanoma stage 1. Very thin, no node involvement, and has no affect on my "status" or life longevity. I just need to have the margins cleared, and that is that…but now I wonder…can I still be considered NED since October 2007? It hasn't reoccurred internally…aw screw it! I can make my own rules and I say I am still NED! 🙂

My apologies to you as well for not posting sooner. To be honest, I couldn't even tell you what kind of radiation it was. It was maybe a total treatment of 6 sessions over a couple three weeks? It was target specific, and I did not have hardly any side effects. I was in grad school at the time, and the only problem I had was some fatigue and redness. 

Looking back, I would say the spot that was radiated was likely not melanoma. It popped up on a scan, they gave me the option to do nothing, and just wait and see, do radiation, or do chemo. Being aggressive, I said let's do something, but was against chemo. I felt the IL-2 was still doing its job, and did not want to wipe it out with chemo. I actually ended up changing oncologists because my original one was against radiation, and wanted me to do chemo. Even though radiation was not known to show good results with melanoma, I felt it was better than doing nothing, but not drastic like chemo. I have no scientific basis for my conclusion, but I just feel like had I done nothing, the spot would have resolved itself by the next scan because it was not cancer. I have no regret doing radiation though, because it was such an easy treatment, and mentally made me feel like I was doing everything I could. I do think my willingness to stand up to my first oncologist and say no, this is what I want and if you won't do it, I will find someone who will, is what saved my life. I truly feel had I done chemo, I would not be here today because it would have wiped out the IL-2 working in my body.

So…I am very out of the loop these days about what type of treatments are being used. I have heard tidbits that radiation is showing more promise, but I have no clue what the treatments are like now, compared to what I had. I tolerated both times I had it very well- prior was on my left axilla area as a 'clean up' after original surgery, but not sure if that is typical.

My apologies to you as well for not posting sooner. To be honest, I couldn't even tell you what kind of radiation it was. It was maybe a total treatment of 6 sessions over a couple three weeks? It was target specific, and I did not have hardly any side effects. I was in grad school at the time, and the only problem I had was some fatigue and redness. 

Looking back, I would say the spot that was radiated was likely not melanoma. It popped up on a scan, they gave me the option to do nothing, and just wait and see, do radiation, or do chemo. Being aggressive, I said let's do something, but was against chemo. I felt the IL-2 was still doing its job, and did not want to wipe it out with chemo. I actually ended up changing oncologists because my original one was against radiation, and wanted me to do chemo. Even though radiation was not known to show good results with melanoma, I felt it was better than doing nothing, but not drastic like chemo. I have no scientific basis for my conclusion, but I just feel like had I done nothing, the spot would have resolved itself by the next scan because it was not cancer. I have no regret doing radiation though, because it was such an easy treatment, and mentally made me feel like I was doing everything I could. I do think my willingness to stand up to my first oncologist and say no, this is what I want and if you won't do it, I will find someone who will, is what saved my life. I truly feel had I done chemo, I would not be here today because it would have wiped out the IL-2 working in my body.

So…I am very out of the loop these days about what type of treatments are being used. I have heard tidbits that radiation is showing more promise, but I have no clue what the treatments are like now, compared to what I had. I tolerated both times I had it very well- prior was on my left axilla area as a 'clean up' after original surgery, but not sure if that is typical.

My apologies to you as well for not posting sooner. To be honest, I couldn't even tell you what kind of radiation it was. It was maybe a total treatment of 6 sessions over a couple three weeks? It was target specific, and I did not have hardly any side effects. I was in grad school at the time, and the only problem I had was some fatigue and redness. 

Looking back, I would say the spot that was radiated was likely not melanoma. It popped up on a scan, they gave me the option to do nothing, and just wait and see, do radiation, or do chemo. Being aggressive, I said let's do something, but was against chemo. I felt the IL-2 was still doing its job, and did not want to wipe it out with chemo. I actually ended up changing oncologists because my original one was against radiation, and wanted me to do chemo. Even though radiation was not known to show good results with melanoma, I felt it was better than doing nothing, but not drastic like chemo. I have no scientific basis for my conclusion, but I just feel like had I done nothing, the spot would have resolved itself by the next scan because it was not cancer. I have no regret doing radiation though, because it was such an easy treatment, and mentally made me feel like I was doing everything I could. I do think my willingness to stand up to my first oncologist and say no, this is what I want and if you won't do it, I will find someone who will, is what saved my life. I truly feel had I done chemo, I would not be here today because it would have wiped out the IL-2 working in my body.

So…I am very out of the loop these days about what type of treatments are being used. I have heard tidbits that radiation is showing more promise, but I have no clue what the treatments are like now, compared to what I had. I tolerated both times I had it very well- prior was on my left axilla area as a 'clean up' after original surgery, but not sure if that is typical.

So sorry it has taken me so long to reply. My whole family has been super sick, and my husband recovering from shoulder surgery, so January has been a total mess!

I was originally diagnosed at stage III in spring 2004. I progressed to stage IV in spring 2006. I finished my final treatment and was NED starting October 2007. All along I was asking my doctors what their thoughts were on pregnancy if I could get NED. Initially (in 2004) they were wary about it unless I was 5+ years out. But over time the stats have really not made any conclusions that pregnancy increases chance of reoccurrence. Yes, hormones can make the body do crazy things, one of which may be cell mutation causing cancer to resurface. Bottom line, no one will ever really know because who is to say if someone has a reoccurrence that the pregnancy is what caused it, or that it would have happened regardless. At 1 year NED my husband and I really starting talking about trying (we weren't getting any younger!). My oncologist said he would prefer to see me be at least 2 years out, but he support me in whatever I decided, and would do whatever was needed to help monitor things in the process. His belief was the cancer would reoccur, or it wouldn't, and pregnancy was not really a determining factor in that. So I think I was about 1.5 years NED when I went off the depo shot. I knew it may take a while to get things working again. It did take us a while, and we were actually looking at IVF when I found out I was pregnant. Adyson was born December 2010, so I was about 2.5 years NED. My husband and I came to the conclusion that we had to be okay with the fact I may get sick again, either during pregnancy, or after, and we could not live with any regrets if I did get sick. He also had to be okay with being a single parent. So far, we have been very lucky and I have remained NED through both pregnancies. 

If I had been a few years younger, we may have waited longer than 2 years, but I can't say for sure. My thought was I am healthy now, let's take advantage of it! Maybe not the best approach, but it worked for us ;).

It's a tough decision, but whatever you do, you just have to commit to it, and never look back with regret.

Congrats on your 3.5 years! That is terrific! Please let me know if I can help in any way. 

~Alison

So sorry it has taken me so long to reply. My whole family has been super sick, and my husband recovering from shoulder surgery, so January has been a total mess!

I was originally diagnosed at stage III in spring 2004. I progressed to stage IV in spring 2006. I finished my final treatment and was NED starting October 2007. All along I was asking my doctors what their thoughts were on pregnancy if I could get NED. Initially (in 2004) they were wary about it unless I was 5+ years out. But over time the stats have really not made any conclusions that pregnancy increases chance of reoccurrence. Yes, hormones can make the body do crazy things, one of which may be cell mutation causing cancer to resurface. Bottom line, no one will ever really know because who is to say if someone has a reoccurrence that the pregnancy is what caused it, or that it would have happened regardless. At 1 year NED my husband and I really starting talking about trying (we weren't getting any younger!). My oncologist said he would prefer to see me be at least 2 years out, but he support me in whatever I decided, and would do whatever was needed to help monitor things in the process. His belief was the cancer would reoccur, or it wouldn't, and pregnancy was not really a determining factor in that. So I think I was about 1.5 years NED when I went off the depo shot. I knew it may take a while to get things working again. It did take us a while, and we were actually looking at IVF when I found out I was pregnant. Adyson was born December 2010, so I was about 2.5 years NED. My husband and I came to the conclusion that we had to be okay with the fact I may get sick again, either during pregnancy, or after, and we could not live with any regrets if I did get sick. He also had to be okay with being a single parent. So far, we have been very lucky and I have remained NED through both pregnancies. 

If I had been a few years younger, we may have waited longer than 2 years, but I can't say for sure. My thought was I am healthy now, let's take advantage of it! Maybe not the best approach, but it worked for us ;).

It's a tough decision, but whatever you do, you just have to commit to it, and never look back with regret.

Congrats on your 3.5 years! That is terrific! Please let me know if I can help in any way. 

~Alison

So sorry it has taken me so long to reply. My whole family has been super sick, and my husband recovering from shoulder surgery, so January has been a total mess!

I was originally diagnosed at stage III in spring 2004. I progressed to stage IV in spring 2006. I finished my final treatment and was NED starting October 2007. All along I was asking my doctors what their thoughts were on pregnancy if I could get NED. Initially (in 2004) they were wary about it unless I was 5+ years out. But over time the stats have really not made any conclusions that pregnancy increases chance of reoccurrence. Yes, hormones can make the body do crazy things, one of which may be cell mutation causing cancer to resurface. Bottom line, no one will ever really know because who is to say if someone has a reoccurrence that the pregnancy is what caused it, or that it would have happened regardless. At 1 year NED my husband and I really starting talking about trying (we weren't getting any younger!). My oncologist said he would prefer to see me be at least 2 years out, but he support me in whatever I decided, and would do whatever was needed to help monitor things in the process. His belief was the cancer would reoccur, or it wouldn't, and pregnancy was not really a determining factor in that. So I think I was about 1.5 years NED when I went off the depo shot. I knew it may take a while to get things working again. It did take us a while, and we were actually looking at IVF when I found out I was pregnant. Adyson was born December 2010, so I was about 2.5 years NED. My husband and I came to the conclusion that we had to be okay with the fact I may get sick again, either during pregnancy, or after, and we could not live with any regrets if I did get sick. He also had to be okay with being a single parent. So far, we have been very lucky and I have remained NED through both pregnancies. 

If I had been a few years younger, we may have waited longer than 2 years, but I can't say for sure. My thought was I am healthy now, let's take advantage of it! Maybe not the best approach, but it worked for us ;).

It's a tough decision, but whatever you do, you just have to commit to it, and never look back with regret.

Congrats on your 3.5 years! That is terrific! Please let me know if I can help in any way. 

~Alison