1. < Melanoma & Skin Cancer

Looking for success stories for Uveal Melanoma Metastasizing to liver?

Posted by Marlene Eckert @me1229, Aug 4, 2024

I was diagnosed with OcularUveal Melanoma in 2023I had successful radiation treatment. My recent scan of the abdomen shows 8 highly suspicious lesions in my liver yet none are big enough to biopsy. My next scan is 8/9 and I see an oncologist 8/12. I also have a 2nd opinion scheduled at MD Anderson in Jacksonville, Florida, my hometown. I am trying to remain positive that I can beat this. I have changed my diet to reduce all sugar, trying to eat very healthy, walking, and trying to reduce stress. I have 2 books, one I just finished titled How to Starve Cancer and another The Metabolic Approach to Treating Cancer. Anyone out there with advice or success stories they can share with me? Do’s and Don’ts ?

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leigha67 | @leigha67 | Feb 15 11:37am
In reply to @sszantay "Hi Marlene, I’m the sszantay, Sue, mentioned above. I believe you are doing everything you can..." + (show)
@sszantay

Hi Marlene, I’m the sszantay, Sue, mentioned above. I believe you are doing everything you can to ward off “cancer”. What we’ve been told most of our lives, “what we put into our bodies will decide how well our body takes care of Us”. I can only speak for myself but I’m not all in on that saying. I don’t think we did anything wrong to get uveal melanoma.
I believe it’s ok to be a “sponge”…..use, talk, share whatever you need to get through the tuff times. I personally think the word “ Suspicious” scares everyone but I’ve found that others who have this word in their scans comes back just fine. Don’t assume the worst until it hits you in the face. Go out with friends, family etc and laugh & enjoy because today you don’t have liver “c” .
Your in my prayers!

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Sue, I apologize for commenting on a post that wasn't directed toward me, but your words are so encouraging. I'm just beginning this uveal melanoma journey and so frightened, which I know isn't good for the body, but I'm beginning to read and research and becoming more and more determined to do everything I can to fight this. Your advice and sharing touched my heart and makes such sense. Thanks, Leigha.

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leigha67 | @leigha67 | Feb 15 11:47am
In reply to @me1229 "@leigha67 I’’m still great. My next round of scans will be March 4th. I’m praying I..." + (show)
@me1229

@leigha67 I’’m still great. My next round of scans will be March 4th. I’m praying I just remain stable with no growth in the lesions.

Where was your radiation done and who is your oncologist. Make sure you write down all your questions before going to them.

When you had your radiation last year did you have them do a biopsy to determine the likelihood of metastasis? I opted for that biopsy and results indicated a 50/50 chance of spreading so I came out on the bad side of the 50! LOL.

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Hello @me1229, I'm so happy to hear from you. I have been so terrified and just speaking (typing...) to others in this boat is such a blessing. YAY at no lesion change. I'm so happy to read you're stable! My radiation was done in Boston. I live in Tucson and begin seeing an oncologist at U of A next week. I have a retinal oncologist who diagnosed this. I didn't opt for the biopsy as I was too frightened of poking the bear (possibly releasing more cancer cells) and I was told in Boston that treatment was the same regardless. When I saw my retinal oncologist yesterday morning, he became quite angry, raised his voice and almost shouted that was why he'd sent me to Boston in the first place, said that it was proven that having the biopsy wasn't dangerous, and that treatment was different depending on the results. I've been in tears since. I wish that he were more compassionate, but at least he has given me good recommendations so far and I'm grateful for that. I'm currently reading 'how to starve cancer'. I'm determined to fight this with all my might. I'll lose weight, do intermittent fasting, read everything I can find, juice, eat healthy, take supplements...I have people who depend on me and want to be there for them, as I'm sure most of us do. That's enough of my moaning. I'm sure we've all felt the same things. How has your experience been? Have you read good things that are helpful? What things work best for you and bring you peace, if I may ask?

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1 reply
leigha67 | @leigha67 | Feb 15 11:50am
In reply to @leigha67 "Hello @me1229, I'm so happy to hear from you. I have been so terrified and just..." + (show)
@leigha67

Hello @me1229, I'm so happy to hear from you. I have been so terrified and just speaking (typing...) to others in this boat is such a blessing. YAY at no lesion change. I'm so happy to read you're stable! My radiation was done in Boston. I live in Tucson and begin seeing an oncologist at U of A next week. I have a retinal oncologist who diagnosed this. I didn't opt for the biopsy as I was too frightened of poking the bear (possibly releasing more cancer cells) and I was told in Boston that treatment was the same regardless. When I saw my retinal oncologist yesterday morning, he became quite angry, raised his voice and almost shouted that was why he'd sent me to Boston in the first place, said that it was proven that having the biopsy wasn't dangerous, and that treatment was different depending on the results. I've been in tears since. I wish that he were more compassionate, but at least he has given me good recommendations so far and I'm grateful for that. I'm currently reading 'how to starve cancer'. I'm determined to fight this with all my might. I'll lose weight, do intermittent fasting, read everything I can find, juice, eat healthy, take supplements...I have people who depend on me and want to be there for them, as I'm sure most of us do. That's enough of my moaning. I'm sure we've all felt the same things. How has your experience been? Have you read good things that are helpful? What things work best for you and bring you peace, if I may ask?

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Also, I'll send out prayers for your lesions to remain stable during the next round of scans!

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Marlene Eckert | @me1229 | Feb 15 7:28pm

Dr. Mussalem gave me some good nutrition info I would be glad to share with you if you’d like. She is completely plant based but I opted to take a lot of her advice but I eat fish, chicken and turkey, no red meat. If you want to send me your email address I’ll be happy to send that to you.

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1 reply
Marlene Eckert | @me1229 | Feb 15 7:34pm

@leigha67 It is my understanding that the biopsy on the Ocular tumor is only for determining your odds of it spreading, not to determine treatment. When it does metastasize, as mine has done in my liver (NOTED by radiology as HIGHLY SUSPICIOUS) that is when a biopsy is done to determine treatment. But, my biggest lesion is only 5mm which is too small to biopsy.

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leigha67 | @leigha67 | Feb 15 9:02pm

@me1229 I'd be so thankful for any advice you can share! I am not sure of the correct procedure for sending email. The system will not permit me to post my actual addy.
I thank you for your sweet, kind and seriously reassuring words. I was told this cancer affects about 6 in a million people. I'm glad we've connected! I am rooting for you!!!

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Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 15 9:53pm
In reply to @me1229 "Dr. Mussalem gave me some good nutrition info I would be glad to share with you..." + (show)
@me1229

Dr. Mussalem gave me some good nutrition info I would be glad to share with you if you’d like. She is completely plant based but I opted to take a lot of her advice but I eat fish, chicken and turkey, no red meat. If you want to send me your email address I’ll be happy to send that to you.

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Hi @me1229, this forum is a public forum. Rather than posting email addresses publicly, it is advised to use the private message function.

I’d also like to point out that by sharing in the forum, you are helping many members and encourage you to post the nutrition tips from Dr.Messallem here.

You and @leigha67 might appreciate this video with Dr. Dawn Mussallem, a physician in the Robert and Monica Jacoby Center for Breast Health where she leads the integrative medicine and health program within the Breast Center. Dr. Mussallem is a cancer survivor herself and shares information about food and diet that helped her and has helped her patients.

Cancer Fighting Foods https://connect.mayoclinic.org/event/cancer-fighting-foods/

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1 reply
Marlene Eckert | @me1229 | Feb 16 7:37am

@colleenyoung How do I use the private message function? I would love to connect with @leigha67 on a personal level if she is willing. Thank you in advance.

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1 reply
leigha67 | @leigha67 | Feb 16 8:00am

I'm looking very forward to connecting with you and I hope that you are having a good day. We're off to ER to investigate a little pain that might be a kidney stone or nothing, but best to have it looked at. I'm taking my phone so I can keep reading, connecting and researching. 🙂

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2 replies
leigha67 | @leigha67 | Feb 16 8:07am
In reply to @colleenyoung "Hi @me1229, this forum is a public forum. Rather than posting email addresses publicly, it is..." + (show)
@colleenyoung

Hi @me1229, this forum is a public forum. Rather than posting email addresses publicly, it is advised to use the private message function.

I’d also like to point out that by sharing in the forum, you are helping many members and encourage you to post the nutrition tips from Dr.Messallem here.

You and @leigha67 might appreciate this video with Dr. Dawn Mussallem, a physician in the Robert and Monica Jacoby Center for Breast Health where she leads the integrative medicine and health program within the Breast Center. Dr. Mussallem is a cancer survivor herself and shares information about food and diet that helped her and has helped her patients.

Cancer Fighting Foods https://connect.mayoclinic.org/event/cancer-fighting-foods/

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@colleenyoung
I see there is a brief period where new members can't private message. I'm not able to send yet. How long will that be?

Thanks,

Leigha

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