› Forums › General Melanoma Community › Boost some confidence in my husband and others!
- This topic has 39 replies, 11 voices, and was last updated 8 years, 10 months ago by
Rita and Charles.
- Post
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- March 25, 2015 at 3:31 pm
For those of you who are NED survivors, I would just like to see some statistics. Make it short and sweet. My husband is IIIc, resected at the moment and is hopfully getting approved for the ipi/nivo 2 arm blind trial in the next 2 weeks. We know he will get one or the other. So I just want a roll call and Im going to print it out for my husband whom has been emotional just to let him see the hope I see daily looking at this forum!
List:
Diagnoses date
Stage
How long NED
What treatment used
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- March 25, 2015 at 3:46 pm
I also forgot to ask, my husband does not eat his fruits and veggies like he should, what diets are suggested if any? Or supplements? I see lots of talk about people booting the immune system and diet changes.
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- March 25, 2015 at 6:13 pm
I was diagnosed as stage 4 at 38 years old (Oct 2012). It was in many lymph nodes throughout my upper body and in my liver.
Have been on MK-3475 (Keytruda) drug trial since then (highest dose)….no end date for treatment. It took the drug 3 months to reverse most of the metastatic melanoma, and about 6 months to totally reverse everything.
I've been NED since Dec 2013. Doing great, working fulltime, and no real side effects. Best of luck to you all, Laurie
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- March 25, 2015 at 6:17 pm
And I changed my diet to eat mostly raw organic fruits and veggies right away. I believe that has made a huge difference in how I feel and how few side effects I have from treatment. Laurie
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- March 25, 2015 at 6:17 pm
And I changed my diet to eat mostly raw organic fruits and veggies right away. I believe that has made a huge difference in how I feel and how few side effects I have from treatment. Laurie
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- March 25, 2015 at 6:17 pm
And I changed my diet to eat mostly raw organic fruits and veggies right away. I believe that has made a huge difference in how I feel and how few side effects I have from treatment. Laurie
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- March 25, 2015 at 6:13 pm
I was diagnosed as stage 4 at 38 years old (Oct 2012). It was in many lymph nodes throughout my upper body and in my liver.
Have been on MK-3475 (Keytruda) drug trial since then (highest dose)….no end date for treatment. It took the drug 3 months to reverse most of the metastatic melanoma, and about 6 months to totally reverse everything.
I've been NED since Dec 2013. Doing great, working fulltime, and no real side effects. Best of luck to you all, Laurie
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- March 25, 2015 at 6:13 pm
I was diagnosed as stage 4 at 38 years old (Oct 2012). It was in many lymph nodes throughout my upper body and in my liver.
Have been on MK-3475 (Keytruda) drug trial since then (highest dose)….no end date for treatment. It took the drug 3 months to reverse most of the metastatic melanoma, and about 6 months to totally reverse everything.
I've been NED since Dec 2013. Doing great, working fulltime, and no real side effects. Best of luck to you all, Laurie
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- March 25, 2015 at 6:58 pm
Aundrea,
I replied on your past post, but would like to add a bit, especially since you wrote about exporing the statistics behind various treatments.
When I was diagnosed Stage IV, and both before and during treatment in a clinical trial, I felt it very therapeutic to write down some of my personal thoughts and share them with family and friends on a blog. One of my blog posts was about statistics for the cancer patient. You can find the blog post here:
http://daveschronicle.blogspot.com/2014/03/statistically-speaking.html
I am a physician with both an MD and PhD and have a background in physiologic research. Even so, I do not read outcome statistics about melanoma. There are subtle, but important differences between looking at a patient, looking at a patient population and looking at oneself as a point in a statistical analysis.
Throughout the journey you and your husband are now experiencing, one of the most important things to do is remain positive, remain optimistic. This is difficult to do when one attempts to absorb all of the statistics about our disease.
DVD
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- March 25, 2015 at 6:58 pm
Aundrea,
I replied on your past post, but would like to add a bit, especially since you wrote about exporing the statistics behind various treatments.
When I was diagnosed Stage IV, and both before and during treatment in a clinical trial, I felt it very therapeutic to write down some of my personal thoughts and share them with family and friends on a blog. One of my blog posts was about statistics for the cancer patient. You can find the blog post here:
http://daveschronicle.blogspot.com/2014/03/statistically-speaking.html
I am a physician with both an MD and PhD and have a background in physiologic research. Even so, I do not read outcome statistics about melanoma. There are subtle, but important differences between looking at a patient, looking at a patient population and looking at oneself as a point in a statistical analysis.
Throughout the journey you and your husband are now experiencing, one of the most important things to do is remain positive, remain optimistic. This is difficult to do when one attempts to absorb all of the statistics about our disease.
DVD
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- March 25, 2015 at 6:58 pm
Aundrea,
I replied on your past post, but would like to add a bit, especially since you wrote about exporing the statistics behind various treatments.
When I was diagnosed Stage IV, and both before and during treatment in a clinical trial, I felt it very therapeutic to write down some of my personal thoughts and share them with family and friends on a blog. One of my blog posts was about statistics for the cancer patient. You can find the blog post here:
http://daveschronicle.blogspot.com/2014/03/statistically-speaking.html
I am a physician with both an MD and PhD and have a background in physiologic research. Even so, I do not read outcome statistics about melanoma. There are subtle, but important differences between looking at a patient, looking at a patient population and looking at oneself as a point in a statistical analysis.
Throughout the journey you and your husband are now experiencing, one of the most important things to do is remain positive, remain optimistic. This is difficult to do when one attempts to absorb all of the statistics about our disease.
DVD
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- March 25, 2015 at 7:31 pm
Diagnosed February 2011 at IIc. Progressed to IIIc in September 2012. Became Stage 4 in January 2013.
Cut it out of my intestine two weeks later. Been NED ever since with no additional treatment (so 14 months and counting). Next scans in May…
Relative to diet, I can sympathize with him as I hate fruits and veggies as well… as a result I consume very little of them. I eat meat. I drink alcohol. I exercise frequently and have no physical limitations from the bowel resection. Tell him to hang in there.
Kevin
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- March 25, 2015 at 7:31 pm
Diagnosed February 2011 at IIc. Progressed to IIIc in September 2012. Became Stage 4 in January 2013.
Cut it out of my intestine two weeks later. Been NED ever since with no additional treatment (so 14 months and counting). Next scans in May…
Relative to diet, I can sympathize with him as I hate fruits and veggies as well… as a result I consume very little of them. I eat meat. I drink alcohol. I exercise frequently and have no physical limitations from the bowel resection. Tell him to hang in there.
Kevin
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- March 25, 2015 at 7:31 pm
Diagnosed February 2011 at IIc. Progressed to IIIc in September 2012. Became Stage 4 in January 2013.
Cut it out of my intestine two weeks later. Been NED ever since with no additional treatment (so 14 months and counting). Next scans in May…
Relative to diet, I can sympathize with him as I hate fruits and veggies as well… as a result I consume very little of them. I eat meat. I drink alcohol. I exercise frequently and have no physical limitations from the bowel resection. Tell him to hang in there.
Kevin
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- March 26, 2015 at 10:16 pm
My husband is IIIC. He was diagnosed 3/2013. He received 4 doses (3mg/kg) of Ipilimumab as part of the Ipi vs Interferon trial. He did not receive maintenance doses due to hypophysitis. He remains NED two years after diagnosis (and we've had a fabulous 2 years!). He was never able to look at forums or read much because it caused him too much anxiety. That became my job. The only use I can see for looking at statistics is in the initial phase when you need to realize that this is a serious diagnosis and then plan for how to move forward– as you have done in looking into the Ipi vs Nivo trial. After that, there is no point. Your husband is unique and his is the only statistic that matters. If there were 100 of him perhaps statistics might be of use but he is one. It will get easier! The initial period after diagnosis is really challenging. There really is a lot of hope now for people who are diagnosed with high risk melanomas!
Take Care,
Kate
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- March 26, 2015 at 10:16 pm
My husband is IIIC. He was diagnosed 3/2013. He received 4 doses (3mg/kg) of Ipilimumab as part of the Ipi vs Interferon trial. He did not receive maintenance doses due to hypophysitis. He remains NED two years after diagnosis (and we've had a fabulous 2 years!). He was never able to look at forums or read much because it caused him too much anxiety. That became my job. The only use I can see for looking at statistics is in the initial phase when you need to realize that this is a serious diagnosis and then plan for how to move forward– as you have done in looking into the Ipi vs Nivo trial. After that, there is no point. Your husband is unique and his is the only statistic that matters. If there were 100 of him perhaps statistics might be of use but he is one. It will get easier! The initial period after diagnosis is really challenging. There really is a lot of hope now for people who are diagnosed with high risk melanomas!
Take Care,
Kate
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- March 26, 2015 at 10:16 pm
My husband is IIIC. He was diagnosed 3/2013. He received 4 doses (3mg/kg) of Ipilimumab as part of the Ipi vs Interferon trial. He did not receive maintenance doses due to hypophysitis. He remains NED two years after diagnosis (and we've had a fabulous 2 years!). He was never able to look at forums or read much because it caused him too much anxiety. That became my job. The only use I can see for looking at statistics is in the initial phase when you need to realize that this is a serious diagnosis and then plan for how to move forward– as you have done in looking into the Ipi vs Nivo trial. After that, there is no point. Your husband is unique and his is the only statistic that matters. If there were 100 of him perhaps statistics might be of use but he is one. It will get easier! The initial period after diagnosis is really challenging. There really is a lot of hope now for people who are diagnosed with high risk melanomas!
Take Care,
Kate
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- March 27, 2015 at 1:25 pm
Thanks for the replies! I know every case is unique but I so much enjoy seeing how so many have come such a long ways in their own personal journey. I love hearing the postive stories, it gives you hope. I have 4 people whom are very close to me with different cancers right now and all were diagnosed within 1 months time. It's a bit overwhelming. My husband and his mother both found out with in weeks they had cancer. Im constantly reserching every second I get to learn about each one.
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- March 27, 2015 at 1:25 pm
Thanks for the replies! I know every case is unique but I so much enjoy seeing how so many have come such a long ways in their own personal journey. I love hearing the postive stories, it gives you hope. I have 4 people whom are very close to me with different cancers right now and all were diagnosed within 1 months time. It's a bit overwhelming. My husband and his mother both found out with in weeks they had cancer. Im constantly reserching every second I get to learn about each one.
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- March 27, 2015 at 1:25 pm
Thanks for the replies! I know every case is unique but I so much enjoy seeing how so many have come such a long ways in their own personal journey. I love hearing the postive stories, it gives you hope. I have 4 people whom are very close to me with different cancers right now and all were diagnosed within 1 months time. It's a bit overwhelming. My husband and his mother both found out with in weeks they had cancer. Im constantly reserching every second I get to learn about each one.
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- March 27, 2015 at 8:18 pm
Hi Aundrea, I am stage 4 and presently on blind 3 arm stage 3 clinical trial of Ipi and Nivo or both together. I am not Ned and many of us that are getting the new drugs may never be. They consider my response to be what is called a partially response, where the tumors decreased in size and have remained stable with no new tumors. You talk about doing some research to help educate yourself, if I may give you some suggestions. Some of the leading names in the field are, Dr. Mario Sznol, Dr.Jeffrey Weber, Dr Omid Hamid, Dr. Jedd Wolchok, Dr. Suzannne Topalian, Dr. Antoni Ribas. There are others but these are some of the main ones involved with the new Immunotherapy trials and research. They all have made video's that are on youtube. I have put up some examples on older post if you are interested. Wishing you and your husband the best. Ed
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- March 27, 2015 at 8:18 pm
Hi Aundrea, I am stage 4 and presently on blind 3 arm stage 3 clinical trial of Ipi and Nivo or both together. I am not Ned and many of us that are getting the new drugs may never be. They consider my response to be what is called a partially response, where the tumors decreased in size and have remained stable with no new tumors. You talk about doing some research to help educate yourself, if I may give you some suggestions. Some of the leading names in the field are, Dr. Mario Sznol, Dr.Jeffrey Weber, Dr Omid Hamid, Dr. Jedd Wolchok, Dr. Suzannne Topalian, Dr. Antoni Ribas. There are others but these are some of the main ones involved with the new Immunotherapy trials and research. They all have made video's that are on youtube. I have put up some examples on older post if you are interested. Wishing you and your husband the best. Ed
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- March 27, 2015 at 8:18 pm
Hi Aundrea, I am stage 4 and presently on blind 3 arm stage 3 clinical trial of Ipi and Nivo or both together. I am not Ned and many of us that are getting the new drugs may never be. They consider my response to be what is called a partially response, where the tumors decreased in size and have remained stable with no new tumors. You talk about doing some research to help educate yourself, if I may give you some suggestions. Some of the leading names in the field are, Dr. Mario Sznol, Dr.Jeffrey Weber, Dr Omid Hamid, Dr. Jedd Wolchok, Dr. Suzannne Topalian, Dr. Antoni Ribas. There are others but these are some of the main ones involved with the new Immunotherapy trials and research. They all have made video's that are on youtube. I have put up some examples on older post if you are interested. Wishing you and your husband the best. Ed
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- June 22, 2015 at 3:29 am
My husband was just diagnosed with metastatic melanoma – 2 cm right lung, and 3-4 cm subcarinal lymph node "lit up" on the PET scan. FDG activity in pereneal sp?, 4 cm aortic aneurism………we only met with doctors last week, NEED hte brain MRI done this week. Surgeon needed to present to the Tumor Board. I have great referral for melanoma specialist at UCSD, currently we are at Scripps Green Hospital in La Jolla, CA – we are supposed to talk "plan" tomorrow with oncolgist and surgeon. It seems to be moving SLOW…reading everyone's treatment, it seems like we should be doing more…..the one month long process of biopsy diagnosis of stage 4 melanonma has been get news, wait. get more news, wait more.
Sorry, I didn't mean to jump into your post – one thing I can add. My friend is a nutritionist that immediately told us to get off all sugar, eat organic, berries, veggies – you can't eat enough to boost immune system. She also sent chart on foods ot build non acidic environment. I feel there is so much to learn! GREAT to hear someone stage 4 and is NED for so long! Any other feedback good…..
Good luck to your husband, mine too is terrified. Me too.
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- June 22, 2015 at 3:29 am
My husband was just diagnosed with metastatic melanoma – 2 cm right lung, and 3-4 cm subcarinal lymph node "lit up" on the PET scan. FDG activity in pereneal sp?, 4 cm aortic aneurism………we only met with doctors last week, NEED hte brain MRI done this week. Surgeon needed to present to the Tumor Board. I have great referral for melanoma specialist at UCSD, currently we are at Scripps Green Hospital in La Jolla, CA – we are supposed to talk "plan" tomorrow with oncolgist and surgeon. It seems to be moving SLOW…reading everyone's treatment, it seems like we should be doing more…..the one month long process of biopsy diagnosis of stage 4 melanonma has been get news, wait. get more news, wait more.
Sorry, I didn't mean to jump into your post – one thing I can add. My friend is a nutritionist that immediately told us to get off all sugar, eat organic, berries, veggies – you can't eat enough to boost immune system. She also sent chart on foods ot build non acidic environment. I feel there is so much to learn! GREAT to hear someone stage 4 and is NED for so long! Any other feedback good…..
Good luck to your husband, mine too is terrified. Me too.
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- June 22, 2015 at 3:29 am
My husband was just diagnosed with metastatic melanoma – 2 cm right lung, and 3-4 cm subcarinal lymph node "lit up" on the PET scan. FDG activity in pereneal sp?, 4 cm aortic aneurism………we only met with doctors last week, NEED hte brain MRI done this week. Surgeon needed to present to the Tumor Board. I have great referral for melanoma specialist at UCSD, currently we are at Scripps Green Hospital in La Jolla, CA – we are supposed to talk "plan" tomorrow with oncolgist and surgeon. It seems to be moving SLOW…reading everyone's treatment, it seems like we should be doing more…..the one month long process of biopsy diagnosis of stage 4 melanonma has been get news, wait. get more news, wait more.
Sorry, I didn't mean to jump into your post – one thing I can add. My friend is a nutritionist that immediately told us to get off all sugar, eat organic, berries, veggies – you can't eat enough to boost immune system. She also sent chart on foods ot build non acidic environment. I feel there is so much to learn! GREAT to hear someone stage 4 and is NED for so long! Any other feedback good…..
Good luck to your husband, mine too is terrified. Me too.
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