› Forums › General Melanoma Community › Newly diagnosed Stage IV – NEED ADVICE!
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Squash.
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- January 2, 2015 at 9:50 pm
I am a 31-year-old wife and mother of two. I live in rural North Dakota and have recently been diagnosed with Stage IV Melanoma.
In August of 2013, I had a mole removed from my lower left calf. It had a Breslow thickness of 1.95mm. My surgeon completed a wide excision and I had a skin graft. I also had a sentinel node biopsy which came back negative. A few weeks later I had a PET scan and it came back clear. I began seeing a dermatologist every 3 months. She found a small melanoma and an atypical melanoma on my back. I had them removed and continued care with her.In July of 2014 I found an enlarged lymph node on my left groin; I was 20 weeks pregnant at the time. My local surgeon removed the lymph node and it came back as melanoma. I was sent to Mayo Clinic in Rochester, MN because my local doctors didn't feel they had the skill set to treat me. At Mayo I had a head, chest, abdominal, and pelvic MRI (only an MRI because of the baby). The only thing that showed up was in my left groin. My doctors decided to perform a lymphadenectomy and found 4 lymph nodes involved. We decided to induce at 37 weeks and begin testing after that.I had my son on December 3 and a PET scan on December 8. The scan showed tumors on my right shoulder, left hip, lower lumbar, and several on my liver. I again went to Mayo. There I had a liver biopsy and it proved to be melanoma. I also had a head MRI which was clear. One of my tumors was tested for B-RAF, and that came back negative.My oncologist at Mayo prescribed chemotherapy – taxol and paraplatin. I go once a week for three weeks and then get a week off. I will do this for two regimens and then have another PET scan.From the basic research I've done, melanoma is not best treated by chemo. I have too much to live for to waste time with something that will not work.Where should I go for another opinion? What kind of drugs may work better for my case? What questions should I be asking?Thanks so much in advance for the advice.
- Replies
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- January 3, 2015 at 12:32 am
Check these sites http://mrf.findmytreatmentcenter.com/ or http://melanomainternational.org/web-resources/cancer-centers/#.VKc27WTF8Yc to find a different center.
I'm sure others will post with specific experiences at melanoma centers.
You might want to look at Tim MRF's post from 12-31-14 to get an overview of what's happening in treatment.
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- January 3, 2015 at 12:32 am
Check these sites http://mrf.findmytreatmentcenter.com/ or http://melanomainternational.org/web-resources/cancer-centers/#.VKc27WTF8Yc to find a different center.
I'm sure others will post with specific experiences at melanoma centers.
You might want to look at Tim MRF's post from 12-31-14 to get an overview of what's happening in treatment.
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- January 3, 2015 at 12:32 am
Check these sites http://mrf.findmytreatmentcenter.com/ or http://melanomainternational.org/web-resources/cancer-centers/#.VKc27WTF8Yc to find a different center.
I'm sure others will post with specific experiences at melanoma centers.
You might want to look at Tim MRF's post from 12-31-14 to get an overview of what's happening in treatment.
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- January 3, 2015 at 4:09 am
Ashley,
My research leads me to your same conclusion about melanoma and chemo. I'm actually very surprised mayo would recommend chemo as a course of treatment. If it were me I would probably be considering three options: Option 1 is starting Ipi with the hope it would be my silver bullet and knowing if it wasn't I could move on to Opdivo (nivolumab) or Keytruda (pembrolizumab). Option 2 would be to look for a combination trial with Ipi and Nivo or a anti-PD1 drug in combination with another drug. Option 3 for me would be a TIL trial.
Trials can be a hard road to navigate especially if you don't have an ocologist helping you. MRF does have a trial finder service that is free so you could try that. If you are interested in at least investigating that option and would like to find out more about it just let say the word in this thread and many of us can give you advice and maybe bring to light some trials that may be available to you.
Best of luck to you Ashley. Can't imagine what it must be like to have a new born and be facing this battle. Hang in there because there are some good options and options that are much better than chemo in my humble opinion.
Brian
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- January 3, 2015 at 4:09 am
Ashley,
My research leads me to your same conclusion about melanoma and chemo. I'm actually very surprised mayo would recommend chemo as a course of treatment. If it were me I would probably be considering three options: Option 1 is starting Ipi with the hope it would be my silver bullet and knowing if it wasn't I could move on to Opdivo (nivolumab) or Keytruda (pembrolizumab). Option 2 would be to look for a combination trial with Ipi and Nivo or a anti-PD1 drug in combination with another drug. Option 3 for me would be a TIL trial.
Trials can be a hard road to navigate especially if you don't have an ocologist helping you. MRF does have a trial finder service that is free so you could try that. If you are interested in at least investigating that option and would like to find out more about it just let say the word in this thread and many of us can give you advice and maybe bring to light some trials that may be available to you.
Best of luck to you Ashley. Can't imagine what it must be like to have a new born and be facing this battle. Hang in there because there are some good options and options that are much better than chemo in my humble opinion.
Brian
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- January 3, 2015 at 4:09 am
Ashley,
My research leads me to your same conclusion about melanoma and chemo. I'm actually very surprised mayo would recommend chemo as a course of treatment. If it were me I would probably be considering three options: Option 1 is starting Ipi with the hope it would be my silver bullet and knowing if it wasn't I could move on to Opdivo (nivolumab) or Keytruda (pembrolizumab). Option 2 would be to look for a combination trial with Ipi and Nivo or a anti-PD1 drug in combination with another drug. Option 3 for me would be a TIL trial.
Trials can be a hard road to navigate especially if you don't have an ocologist helping you. MRF does have a trial finder service that is free so you could try that. If you are interested in at least investigating that option and would like to find out more about it just let say the word in this thread and many of us can give you advice and maybe bring to light some trials that may be available to you.
Best of luck to you Ashley. Can't imagine what it must be like to have a new born and be facing this battle. Hang in there because there are some good options and options that are much better than chemo in my humble opinion.
Brian
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- January 3, 2015 at 4:14 am
Hi Ashley,
Sorry for so much blessing and so much chaos rolled into a few short days. You need a melanoma specialist as soon as possible!!! Ipi (yervoy) would be a first line, FDA approved, appropriate treatment option that you could start IMMEDIATELY!!! If your melanoma is BRAF negative then the BRAF inhibitors would not be effective for you, but there are many other options. You could always take either of the anti-PD1 products (Nivolumab, now called Opdivo) or (MK3475, now called Keytruda) if your tumors do not respond to the Yervoy. TIL, IL2, and radiation….are all more viable options, I fear, than the one you are getting currently. You can search this site for these treatments options. You can use the bubble to the top left of my blog to search for explanations and some of the latest data. If you develop specific questions, there is a wealth of information and support from readers here as well.
I wish you my best. Celeste
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- January 3, 2015 at 4:14 am
Hi Ashley,
Sorry for so much blessing and so much chaos rolled into a few short days. You need a melanoma specialist as soon as possible!!! Ipi (yervoy) would be a first line, FDA approved, appropriate treatment option that you could start IMMEDIATELY!!! If your melanoma is BRAF negative then the BRAF inhibitors would not be effective for you, but there are many other options. You could always take either of the anti-PD1 products (Nivolumab, now called Opdivo) or (MK3475, now called Keytruda) if your tumors do not respond to the Yervoy. TIL, IL2, and radiation….are all more viable options, I fear, than the one you are getting currently. You can search this site for these treatments options. You can use the bubble to the top left of my blog to search for explanations and some of the latest data. If you develop specific questions, there is a wealth of information and support from readers here as well.
I wish you my best. Celeste
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- January 3, 2015 at 4:14 am
Hi Ashley,
Sorry for so much blessing and so much chaos rolled into a few short days. You need a melanoma specialist as soon as possible!!! Ipi (yervoy) would be a first line, FDA approved, appropriate treatment option that you could start IMMEDIATELY!!! If your melanoma is BRAF negative then the BRAF inhibitors would not be effective for you, but there are many other options. You could always take either of the anti-PD1 products (Nivolumab, now called Opdivo) or (MK3475, now called Keytruda) if your tumors do not respond to the Yervoy. TIL, IL2, and radiation….are all more viable options, I fear, than the one you are getting currently. You can search this site for these treatments options. You can use the bubble to the top left of my blog to search for explanations and some of the latest data. If you develop specific questions, there is a wealth of information and support from readers here as well.
I wish you my best. Celeste
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- January 3, 2015 at 5:52 am
Please as another suggested see a melanoma oncologist you need specialist treatment. As to chemo treatment I am not a doctor but the spouse of a melanoma fighter who sadly lost her battle after 31/2years at stage four. My wife had il-2 and yervoy without a response and was on a TIL trial right up to the point of implanting cells when due to new cancer spread she was no longer able to have cells implanted. After that since Pd-1was not yet approved she did have chemo with vinblastin, cisplatin and Temador . This did shrink her tumors and for five months helped until it spread a second time to the brain. As others stated I cannot understand chemo at this point I would think yervoy or PD-1 would be far better choices. Please get another opinion on treatment and again see a melanoma specialist . I wish you the best, also I think you could be a good candidate for TIL at M. D. Anderson or NIH. But they both would want PD-1or Yervoy first tried I believe. Fight this beast you are young and can beat it with the best of care.
Daniel
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- January 3, 2015 at 5:52 am
Please as another suggested see a melanoma oncologist you need specialist treatment. As to chemo treatment I am not a doctor but the spouse of a melanoma fighter who sadly lost her battle after 31/2years at stage four. My wife had il-2 and yervoy without a response and was on a TIL trial right up to the point of implanting cells when due to new cancer spread she was no longer able to have cells implanted. After that since Pd-1was not yet approved she did have chemo with vinblastin, cisplatin and Temador . This did shrink her tumors and for five months helped until it spread a second time to the brain. As others stated I cannot understand chemo at this point I would think yervoy or PD-1 would be far better choices. Please get another opinion on treatment and again see a melanoma specialist . I wish you the best, also I think you could be a good candidate for TIL at M. D. Anderson or NIH. But they both would want PD-1or Yervoy first tried I believe. Fight this beast you are young and can beat it with the best of care.
Daniel
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- January 3, 2015 at 2:56 pm
I had tumors in generally the same areas as you as well as one in my brain and one in my lung. I am also braf negative. The good news is that Keytruda is working wonders for me. You first have to try Yervoy. If Yervoy doesn't do the trick, then you would be eligible to try Keytruda. Nivo and Yervoy work well in combination, too. My point is there's treatments that really work!!! I hope you don't have to travel too far to find a melanoma specialist. My first oncologist was top notch but he said he was not a specialist in Melanoma and pointed me in the right direction. I live in Virginia so I can't recommend anyone in your area. I hope and pray that you feel well enough to enjoy your baby and that the chemo at least stalls things…especially the lumbar mets. Of all of my tumors, the lumbar has caused the most pain. My liver mets disappeard after 2 rounds of Yervoy, but I had to stop due to pituitary problems. Surgery and SRS took care of the brain tumor. Now all the other tumors are shrinking or resolved. I also was a patient at NIH and if that is a route you choose, you will get world class care. I've heard great things about MD Anderson as well as Moffitt in Florida but surely there is something closer to you. I am now treated by Dr. Evan Lipson/ Johns Hopkins and Dr. Michael Atkins at Georgetown where I receive the Keytruda infusions. All my best to you….I really hope you find a melanoma expert soon, that your current treatment is not causing you too much discomfort and that you'll have a great 2015!
Terrie
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- January 3, 2015 at 2:56 pm
I had tumors in generally the same areas as you as well as one in my brain and one in my lung. I am also braf negative. The good news is that Keytruda is working wonders for me. You first have to try Yervoy. If Yervoy doesn't do the trick, then you would be eligible to try Keytruda. Nivo and Yervoy work well in combination, too. My point is there's treatments that really work!!! I hope you don't have to travel too far to find a melanoma specialist. My first oncologist was top notch but he said he was not a specialist in Melanoma and pointed me in the right direction. I live in Virginia so I can't recommend anyone in your area. I hope and pray that you feel well enough to enjoy your baby and that the chemo at least stalls things…especially the lumbar mets. Of all of my tumors, the lumbar has caused the most pain. My liver mets disappeard after 2 rounds of Yervoy, but I had to stop due to pituitary problems. Surgery and SRS took care of the brain tumor. Now all the other tumors are shrinking or resolved. I also was a patient at NIH and if that is a route you choose, you will get world class care. I've heard great things about MD Anderson as well as Moffitt in Florida but surely there is something closer to you. I am now treated by Dr. Evan Lipson/ Johns Hopkins and Dr. Michael Atkins at Georgetown where I receive the Keytruda infusions. All my best to you….I really hope you find a melanoma expert soon, that your current treatment is not causing you too much discomfort and that you'll have a great 2015!
Terrie
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- January 3, 2015 at 4:26 pm
Ashley, I totally agree with you about not wasting time. You have gotten great advice here to seek out an oncologist specializing in melanoma. Also, you are very fortunate to have developed Stage IV now as opposed to just 3 years ago (more or less). As others have mentioned we have new immunotherapy drugs (Yervoy and the two very new anti-PD1 drugs Keytruda and Opdivo) that have changed the playing field for us stage IV patients. Please don't take me the wrong way, of course it’s horrible for anyone to progress to stage IV, it’s just that you have such a better chance of beating it today.
Hey Terrie, even though I live in Seattle, I was flying out to Johns Hopkins monthly a couple of years ago when I was in the GVAX trial that Dr. Lipson was running. He is a very thorough Dr. and a bright and dedicated researcher. You are in good hands!
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- January 3, 2015 at 4:26 pm
Ashley, I totally agree with you about not wasting time. You have gotten great advice here to seek out an oncologist specializing in melanoma. Also, you are very fortunate to have developed Stage IV now as opposed to just 3 years ago (more or less). As others have mentioned we have new immunotherapy drugs (Yervoy and the two very new anti-PD1 drugs Keytruda and Opdivo) that have changed the playing field for us stage IV patients. Please don't take me the wrong way, of course it’s horrible for anyone to progress to stage IV, it’s just that you have such a better chance of beating it today.
Hey Terrie, even though I live in Seattle, I was flying out to Johns Hopkins monthly a couple of years ago when I was in the GVAX trial that Dr. Lipson was running. He is a very thorough Dr. and a bright and dedicated researcher. You are in good hands!
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- January 3, 2015 at 4:26 pm
Ashley, I totally agree with you about not wasting time. You have gotten great advice here to seek out an oncologist specializing in melanoma. Also, you are very fortunate to have developed Stage IV now as opposed to just 3 years ago (more or less). As others have mentioned we have new immunotherapy drugs (Yervoy and the two very new anti-PD1 drugs Keytruda and Opdivo) that have changed the playing field for us stage IV patients. Please don't take me the wrong way, of course it’s horrible for anyone to progress to stage IV, it’s just that you have such a better chance of beating it today.
Hey Terrie, even though I live in Seattle, I was flying out to Johns Hopkins monthly a couple of years ago when I was in the GVAX trial that Dr. Lipson was running. He is a very thorough Dr. and a bright and dedicated researcher. You are in good hands!
-
- January 3, 2015 at 2:56 pm
I had tumors in generally the same areas as you as well as one in my brain and one in my lung. I am also braf negative. The good news is that Keytruda is working wonders for me. You first have to try Yervoy. If Yervoy doesn't do the trick, then you would be eligible to try Keytruda. Nivo and Yervoy work well in combination, too. My point is there's treatments that really work!!! I hope you don't have to travel too far to find a melanoma specialist. My first oncologist was top notch but he said he was not a specialist in Melanoma and pointed me in the right direction. I live in Virginia so I can't recommend anyone in your area. I hope and pray that you feel well enough to enjoy your baby and that the chemo at least stalls things…especially the lumbar mets. Of all of my tumors, the lumbar has caused the most pain. My liver mets disappeard after 2 rounds of Yervoy, but I had to stop due to pituitary problems. Surgery and SRS took care of the brain tumor. Now all the other tumors are shrinking or resolved. I also was a patient at NIH and if that is a route you choose, you will get world class care. I've heard great things about MD Anderson as well as Moffitt in Florida but surely there is something closer to you. I am now treated by Dr. Evan Lipson/ Johns Hopkins and Dr. Michael Atkins at Georgetown where I receive the Keytruda infusions. All my best to you….I really hope you find a melanoma expert soon, that your current treatment is not causing you too much discomfort and that you'll have a great 2015!
Terrie
-
- January 3, 2015 at 5:52 am
Please as another suggested see a melanoma oncologist you need specialist treatment. As to chemo treatment I am not a doctor but the spouse of a melanoma fighter who sadly lost her battle after 31/2years at stage four. My wife had il-2 and yervoy without a response and was on a TIL trial right up to the point of implanting cells when due to new cancer spread she was no longer able to have cells implanted. After that since Pd-1was not yet approved she did have chemo with vinblastin, cisplatin and Temador . This did shrink her tumors and for five months helped until it spread a second time to the brain. As others stated I cannot understand chemo at this point I would think yervoy or PD-1 would be far better choices. Please get another opinion on treatment and again see a melanoma specialist . I wish you the best, also I think you could be a good candidate for TIL at M. D. Anderson or NIH. But they both would want PD-1or Yervoy first tried I believe. Fight this beast you are young and can beat it with the best of care.
Daniel
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- January 3, 2015 at 5:15 pm
Wow Ashley. This should be a time of great joy with your new baby but now you have to fight this.
Ive been treated at mayo as well but with keytruda pd1. I can't put words in their mouth but I believe their treatment decision was probably to get something working quickly since you can't have braf.
if I were you while you are on this treatment and feel ok enough to at least make calls I would try to get into a pd1 ipi combo trial. I think that is at moffitt which is a long way. For closer there is the university of Chicago which is a couple hours from mayo. Dr Gajewski is supposed to be pretty good especially with immunotherapy. Probably worth the little extra distance in my opinion.
Artie
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- January 3, 2015 at 7:57 pm
If you need financial assistance or other navigation help go here for help to get to a specialist: http://melanomainternational.org/who-we-are/patient-access-grants-apply
Or try another doc at MAYO and explain your concerns about current treatment.
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- January 3, 2015 at 7:57 pm
If you need financial assistance or other navigation help go here for help to get to a specialist: http://melanomainternational.org/who-we-are/patient-access-grants-apply
Or try another doc at MAYO and explain your concerns about current treatment.
-
- January 3, 2015 at 7:57 pm
If you need financial assistance or other navigation help go here for help to get to a specialist: http://melanomainternational.org/who-we-are/patient-access-grants-apply
Or try another doc at MAYO and explain your concerns about current treatment.
-
- January 3, 2015 at 5:15 pm
Wow Ashley. This should be a time of great joy with your new baby but now you have to fight this.
Ive been treated at mayo as well but with keytruda pd1. I can't put words in their mouth but I believe their treatment decision was probably to get something working quickly since you can't have braf.
if I were you while you are on this treatment and feel ok enough to at least make calls I would try to get into a pd1 ipi combo trial. I think that is at moffitt which is a long way. For closer there is the university of Chicago which is a couple hours from mayo. Dr Gajewski is supposed to be pretty good especially with immunotherapy. Probably worth the little extra distance in my opinion.
Artie
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- January 3, 2015 at 5:15 pm
Wow Ashley. This should be a time of great joy with your new baby but now you have to fight this.
Ive been treated at mayo as well but with keytruda pd1. I can't put words in their mouth but I believe their treatment decision was probably to get something working quickly since you can't have braf.
if I were you while you are on this treatment and feel ok enough to at least make calls I would try to get into a pd1 ipi combo trial. I think that is at moffitt which is a long way. For closer there is the university of Chicago which is a couple hours from mayo. Dr Gajewski is supposed to be pretty good especially with immunotherapy. Probably worth the little extra distance in my opinion.
Artie
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- January 3, 2015 at 8:26 pm
My daughter just became stage IV to liver. They did an embolisation and started her on YERVOY immediately. we will wait to see if she's BRAF but I would encourage you to go another route than chemo. Prayers your way!
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- January 4, 2015 at 12:20 am
Hi Ashley,
I am sorry to hear your news. I was diagnosed stage 1 in 2008 when my wife was eight months pregnant with our first daughter. I was diagnosed stage 4 when my wife was eight months pregnant with our second daughter. I was released from the hospital (after lung surgery to remove my met) five days before my daughter was born. I'd like to offer you different advice because it seems as if we have had somewhat similar paths.
First, be direct with family and friends. Ask for help. Tell them you don't need their pity-you need frozen dinners made In dishes that don't need to be returned! When people are intruding tell them you need space. Some people will get it, some won't. No matter what, please realize that your family comes first. That means you too! Be specific. People want to help. … Have someone come over so you can rest, get a foot massage, accept help, …
Second … Enjoy your baby. My second daughter just turned three in October. She has me wrapped around her finger. I now realize that she was born at the perfect time because she saved me from self pity. She gave me hope.
Good luck to you and your family.
Brendan
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- January 4, 2015 at 12:20 am
Hi Ashley,
I am sorry to hear your news. I was diagnosed stage 1 in 2008 when my wife was eight months pregnant with our first daughter. I was diagnosed stage 4 when my wife was eight months pregnant with our second daughter. I was released from the hospital (after lung surgery to remove my met) five days before my daughter was born. I'd like to offer you different advice because it seems as if we have had somewhat similar paths.
First, be direct with family and friends. Ask for help. Tell them you don't need their pity-you need frozen dinners made In dishes that don't need to be returned! When people are intruding tell them you need space. Some people will get it, some won't. No matter what, please realize that your family comes first. That means you too! Be specific. People want to help. … Have someone come over so you can rest, get a foot massage, accept help, …
Second … Enjoy your baby. My second daughter just turned three in October. She has me wrapped around her finger. I now realize that she was born at the perfect time because she saved me from self pity. She gave me hope.
Good luck to you and your family.
Brendan
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- January 4, 2015 at 12:20 am
Hi Ashley,
I am sorry to hear your news. I was diagnosed stage 1 in 2008 when my wife was eight months pregnant with our first daughter. I was diagnosed stage 4 when my wife was eight months pregnant with our second daughter. I was released from the hospital (after lung surgery to remove my met) five days before my daughter was born. I'd like to offer you different advice because it seems as if we have had somewhat similar paths.
First, be direct with family and friends. Ask for help. Tell them you don't need their pity-you need frozen dinners made In dishes that don't need to be returned! When people are intruding tell them you need space. Some people will get it, some won't. No matter what, please realize that your family comes first. That means you too! Be specific. People want to help. … Have someone come over so you can rest, get a foot massage, accept help, …
Second … Enjoy your baby. My second daughter just turned three in October. She has me wrapped around her finger. I now realize that she was born at the perfect time because she saved me from self pity. She gave me hope.
Good luck to you and your family.
Brendan
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- January 4, 2015 at 3:38 am
Thank you all for the advice. Your information and positive stories were exactly what I needed. We've contacted NIH, Moffit, and MD Anderson. I think we'll start with Houston and go from there.
Ashley
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- January 4, 2015 at 12:32 pm
Hi Ashley,
Sorry to hear your news!
My wife (33yrs old) and I are going through something similar. She was first diagnosed during her pregnancy (her first) and then progressed to Stage IV by the end of it, two days after our daughter was born, they had scan results indicating tumors in her bones, lungs and mostly liver and spleen.
She was in a pretty dire condition, so they put her on the BRAF/MEK combo right away (she tested positive) which did wonder – she started gaining strength and within a week or two was able to walk outside again. She then felt great for 5 months and had significant tumor reduction and even a PET negative scan after a couple of months of treatment.
Shen then progressed with new (bone) and enlarged tumors and have started on PD1 just before Christmas. She now has had 2 infusions.
A couple of thoughts:
– Agree to see a real melanoma specialist, it makes a world of difference. I honestly think my wife wouldn't be alive right now if we hadn't moved to a better hospital.
– See if your MD thinks you need a quick boost (my wife did and the BRAF/MEK combo did the job, maybe that's why your doctor has recommended chemo) or if you have the time to go through Ipi and then onto PD1.
– For my wife having this happen so shortly after our first daughter was born was a shock but soon after a blessing as well -> she gives some much laughter & joy and will to live! I would recommend getting help, because you probably need all the sleep you can get to fight melanoma.
– My wife became a vegan and eats a diet of mosty organic fruit, veg and nuts – with some soy. She drinks protein shakes to stay strong and takes all kinds of supplements: B12, quercetin, resveratrol, CoQ10, turmeric, Zylfamax. She also takes cannabis oil.
That's probably it for now, feel free to reach our for any support & questions!
Rick
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- January 6, 2015 at 2:06 am
Sorry to hear about your wifes diagnosis.
Good to hear you are taking proactive steps with supplements and diet.
One thing i would say about diet is that I think from what i have researched that a high red meat diet is better for people with melanoma than a vegan diet.
For hard tumours a vegan diet is recommended but not so with blood or immune based cancers.
I base that on what i have read on Dr Gonzalez's website who is an alternative cancer speacialist with a proven track record in treating cancer patients.
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- January 6, 2015 at 2:06 am
Sorry to hear about your wifes diagnosis.
Good to hear you are taking proactive steps with supplements and diet.
One thing i would say about diet is that I think from what i have researched that a high red meat diet is better for people with melanoma than a vegan diet.
For hard tumours a vegan diet is recommended but not so with blood or immune based cancers.
I base that on what i have read on Dr Gonzalez's website who is an alternative cancer speacialist with a proven track record in treating cancer patients.
-
- January 6, 2015 at 2:06 am
Sorry to hear about your wifes diagnosis.
Good to hear you are taking proactive steps with supplements and diet.
One thing i would say about diet is that I think from what i have researched that a high red meat diet is better for people with melanoma than a vegan diet.
For hard tumours a vegan diet is recommended but not so with blood or immune based cancers.
I base that on what i have read on Dr Gonzalez's website who is an alternative cancer speacialist with a proven track record in treating cancer patients.
-
- January 4, 2015 at 12:32 pm
Hi Ashley,
Sorry to hear your news!
My wife (33yrs old) and I are going through something similar. She was first diagnosed during her pregnancy (her first) and then progressed to Stage IV by the end of it, two days after our daughter was born, they had scan results indicating tumors in her bones, lungs and mostly liver and spleen.
She was in a pretty dire condition, so they put her on the BRAF/MEK combo right away (she tested positive) which did wonder – she started gaining strength and within a week or two was able to walk outside again. She then felt great for 5 months and had significant tumor reduction and even a PET negative scan after a couple of months of treatment.
Shen then progressed with new (bone) and enlarged tumors and have started on PD1 just before Christmas. She now has had 2 infusions.
A couple of thoughts:
– Agree to see a real melanoma specialist, it makes a world of difference. I honestly think my wife wouldn't be alive right now if we hadn't moved to a better hospital.
– See if your MD thinks you need a quick boost (my wife did and the BRAF/MEK combo did the job, maybe that's why your doctor has recommended chemo) or if you have the time to go through Ipi and then onto PD1.
– For my wife having this happen so shortly after our first daughter was born was a shock but soon after a blessing as well -> she gives some much laughter & joy and will to live! I would recommend getting help, because you probably need all the sleep you can get to fight melanoma.
– My wife became a vegan and eats a diet of mosty organic fruit, veg and nuts – with some soy. She drinks protein shakes to stay strong and takes all kinds of supplements: B12, quercetin, resveratrol, CoQ10, turmeric, Zylfamax. She also takes cannabis oil.
That's probably it for now, feel free to reach our for any support & questions!
Rick
-
- January 4, 2015 at 12:32 pm
Hi Ashley,
Sorry to hear your news!
My wife (33yrs old) and I are going through something similar. She was first diagnosed during her pregnancy (her first) and then progressed to Stage IV by the end of it, two days after our daughter was born, they had scan results indicating tumors in her bones, lungs and mostly liver and spleen.
She was in a pretty dire condition, so they put her on the BRAF/MEK combo right away (she tested positive) which did wonder – she started gaining strength and within a week or two was able to walk outside again. She then felt great for 5 months and had significant tumor reduction and even a PET negative scan after a couple of months of treatment.
Shen then progressed with new (bone) and enlarged tumors and have started on PD1 just before Christmas. She now has had 2 infusions.
A couple of thoughts:
– Agree to see a real melanoma specialist, it makes a world of difference. I honestly think my wife wouldn't be alive right now if we hadn't moved to a better hospital.
– See if your MD thinks you need a quick boost (my wife did and the BRAF/MEK combo did the job, maybe that's why your doctor has recommended chemo) or if you have the time to go through Ipi and then onto PD1.
– For my wife having this happen so shortly after our first daughter was born was a shock but soon after a blessing as well -> she gives some much laughter & joy and will to live! I would recommend getting help, because you probably need all the sleep you can get to fight melanoma.
– My wife became a vegan and eats a diet of mosty organic fruit, veg and nuts – with some soy. She drinks protein shakes to stay strong and takes all kinds of supplements: B12, quercetin, resveratrol, CoQ10, turmeric, Zylfamax. She also takes cannabis oil.
That's probably it for now, feel free to reach our for any support & questions!
Rick
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- January 5, 2015 at 5:53 pm
Hi Ashley,
I was diagnosed as stage 4 back in Oct 2012. I am writing just to put you at ease a little bit and give you back your hope. 🙂
I started a clinical trial for MK-3475…which has now been approved by the FDA in September and is now called Keytruda.
I am doing great and have been living a basically normal life throughout treatment, working full time no problem, and am considered stable and quite healthy. My melanoma had spread from a primary on my right upper arm from 12 years prior. It had spread to several lymph nodes in both my arm pits, behind my chest wall plate, wrapped around my heart and I had a mass on my liver. All of that disappeared or shrank within the first 6 months on treatment and now seems to basically be gone. I also switched my diet to one that is mostly raw organic fruits and veggies to give my immune system as many healthy nutrients as possible to help fight this.
I would suggest the same at the others….get to a melanoma specialist so that they are able to get you on the right treatment. And try not to worry and stress too much…that only makes everything worse. Try closing your eyes and taking ten deep breaths to relax yourself. It does really help.
Much heatlh and happiness to you and your family, Laurie
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- January 5, 2015 at 5:53 pm
Hi Ashley,
I was diagnosed as stage 4 back in Oct 2012. I am writing just to put you at ease a little bit and give you back your hope. 🙂
I started a clinical trial for MK-3475…which has now been approved by the FDA in September and is now called Keytruda.
I am doing great and have been living a basically normal life throughout treatment, working full time no problem, and am considered stable and quite healthy. My melanoma had spread from a primary on my right upper arm from 12 years prior. It had spread to several lymph nodes in both my arm pits, behind my chest wall plate, wrapped around my heart and I had a mass on my liver. All of that disappeared or shrank within the first 6 months on treatment and now seems to basically be gone. I also switched my diet to one that is mostly raw organic fruits and veggies to give my immune system as many healthy nutrients as possible to help fight this.
I would suggest the same at the others….get to a melanoma specialist so that they are able to get you on the right treatment. And try not to worry and stress too much…that only makes everything worse. Try closing your eyes and taking ten deep breaths to relax yourself. It does really help.
Much heatlh and happiness to you and your family, Laurie
-
- January 5, 2015 at 5:53 pm
Hi Ashley,
I was diagnosed as stage 4 back in Oct 2012. I am writing just to put you at ease a little bit and give you back your hope. 🙂
I started a clinical trial for MK-3475…which has now been approved by the FDA in September and is now called Keytruda.
I am doing great and have been living a basically normal life throughout treatment, working full time no problem, and am considered stable and quite healthy. My melanoma had spread from a primary on my right upper arm from 12 years prior. It had spread to several lymph nodes in both my arm pits, behind my chest wall plate, wrapped around my heart and I had a mass on my liver. All of that disappeared or shrank within the first 6 months on treatment and now seems to basically be gone. I also switched my diet to one that is mostly raw organic fruits and veggies to give my immune system as many healthy nutrients as possible to help fight this.
I would suggest the same at the others….get to a melanoma specialist so that they are able to get you on the right treatment. And try not to worry and stress too much…that only makes everything worse. Try closing your eyes and taking ten deep breaths to relax yourself. It does really help.
Much heatlh and happiness to you and your family, Laurie
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Tagged: cutaneous melanoma
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