› Forums › General Melanoma Community › Melanoma came back
- This topic has 19 replies, 7 voices, and was last updated 5 years, 3 months ago by
Edwin.
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- January 12, 2019 at 2:28 pm
Hello, I recently finished 1 year of Opdivo. Thought everything was going great. They did a base scan to start for after medication and found multiple spots on my liver and lungs…. Completely surprised me. I had nothing on my last scan in April, had no side effects whatsoever during treatment. They did a biopsy on my liver and found out yesterday that it is melanoma again… Inoperable and incurable. I will be getting an MRI on my brain next week to make sure it isn’t there also. I will then be starting the Yervoy/Opdivo regimen.
I am at a loss on how to feel about all of this. I have changed my diet. I am so scared
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- January 12, 2019 at 5:18 pm
Dear Happygal,
so sorry to hear about your reoccurrence, but don't lose hope too soon… there are many options to choose from treatment wise, the combo beeing one of the best! People have turned incurable heavy burdens to NED and so can you! Since mono therapy worked for you, the chances are good that the combo will too!!
Stay positive and calm, you can do this!!!
Wish you all the best,
Patrisa
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- January 13, 2019 at 1:45 pm
I am sorry you are dealing with this and think Patrisa makes a good point. I would also be sure to discuss BRAF status (if you haven't already) with my docs as targeted therapy with a BRAF/MEK combo may be a treatment option if you are BRAF positive. Radiation to the liver (and other places) is sometimes an option as well. We have learned that when radiation is combined with immunotherapy, response can be improved. Here are some reports: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=radiation+and+immunotherapy
Make sure you are being seen by an oncologist well versed in melanoma treatment. Hang in there. You can do this. I wish you my best. Celeste
In case you are interested, here is a primer I put together on current melanoma therapies:
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- January 14, 2019 at 2:12 pm
Thank you Celeste,
I am not BRAF positive and it is too spread for radiation… I do have a very well versed Oncologist in melanoma and very thankful for that. thank you I do appreciate all responses. I will live each day and go forward. That is all I have.
Tyais
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- January 14, 2019 at 2:42 pm
This thread from the board may interest you if you haven't seen it: https://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/liver-and-adrenal-mets
c
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- January 15, 2019 at 2:08 pm
hey Happy Gal,
I can only imagine the anxiety and the feeling of devastation after recurrence. Being scared is probably pretty normal 🙂 I've been on this board for about five years and have seen many really turn the corner for the better after recurrence and this board is biased to those that are generally more advanced so treatments are getting way better and more effective. The science and the drug advancements are happening pretty fast now (even though it can seem that trials and phases take forever). I know it's a lot of gobbledy gook at times, what i really wanted to say is that we are here for you in solidarity and emotional support. I'm hoping the Brain MRI is all clear and the Yervoy/Opdivo begins hitting the liver/lung mets. Bubbles and Ed know way more, but often combined therapy can have much greater effect than one therapy alone (synergy).
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- January 15, 2019 at 2:35 pm
Also, from your profile, saw that you and your hubby are in the music business as band. My husband was in the business for 25 years (worked as a buyer with national chain and then with all the indy record labels through major label). I'm hoping that passion for music will help through all this, it definitely helps us deal. Sometimes we just rock it out. I was never into heavy metal (Sabbath, etc,) until the last five years….helps get the anger out 🙂
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- January 15, 2019 at 3:51 pm
HI Jackie, thank you for your words of wisdom… Yes music is definatley a healing entity in itself. My husband does the good old calssic country, it is good for the soul.
Thank you, Yes I am putting my hope and strength forward, looking into diet #1, go from there. We just have to be positive, I do know that. We live a fill life and I'm not going to stop until I can't do it anymore.
Tyais
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- January 15, 2019 at 7:18 pm
Nothing wrong with good old classic country! We live in Texas now and they are pretty big on country around here 🙂 One of the main categories my husband bought for was country so he got to meet many of the greats, including Johnny and June Carter Cash right before they passed 🙂 My husband would say Waylon was the best of the bunch though. It's nice to hear your passion for the music. I know they haven't found a strong correlation between diet and outcomes (even our oncologist Dr. Amaria at MD Anderson told me not to bother when I went a little bit nuts buying a juicer immediately after my husband's diagnosis),but it for sure doesn't HURT to eat healthy. Wishing you many more years of touring with your husband's band 🙂
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- January 16, 2019 at 5:24 am
Although I feel your frustration, you need to stay the course and remain positive in spite of everything. Attitude is everything! Counter it with all you got and do not rely only on standard medicine but use it in addition to. It took me two and a half months to get diagnosed and I was so extremely ill, I was like a real walking dead person petrified to look at myself in the mirror not to mention my body nor mind was not my own. I started on Gerson Cancer Diet Protocol……….yes it is severe, yes it is overwhelming but so is MELANOMA and within two weeks I was a totally different person. I felt more like myself, my acid reflux was gone, I had energy, life was returning back into my body, My family noticed also the immediate difference on multiple levels. I also used Essiac, Avemar, Botswelia Phytosome Extract, and few others…………if you are interested I could share. Please understand that I am not trying to sell you anything just open your eyes, do your own research and decide what if anything you want to use. I've been to four naturopathic oncologists and numerous medically trained U of M pharmacists and they have all approved these supplements so I am not the only cancer patient out there who is using them.
Having said all that, I have mets in my liver and lungs and have undergone two ipi/novo combined tretments before my liver enzymes skyrocketted and now I am on high doses of prednisone and cellcept. On the good side, my first CT scan, just this christmas indicated 50% tumor shrinkage across the board!
I don't know what the future holds however during my own extensive research into stage IV survivors of any cancer I have found that they have all changed their diets among other things. This is the KEY because cancer is not a single organ disease but an entire body disease and as such environment impacts it whether we like it or not. You can order The Gerson Therapy by Charlotte Gerson and Morton Walker book for under $20 and you can teach yourself. It will be lifechanging for you as it was for me.
Best of luck and stay strong…..just another curve in the road of life!
Melanie
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- January 16, 2019 at 12:16 pm
I am glad that you feel that what you are doing is working for you, Melanie. However, in the effort to provide factual, statistically accurate information to all on this board, it is important to note that there is absolutely NO scientific evidence to support the use of the Gerson Diet to prevent or ameliorate cancer of any sort, particularly melanoma. Indeed, I have personally known it to be "life changing" for many, having watched folks using it pass rapidly from melanoma as well as other cancers, albeit they were often using it in lieu of effective cancer treatment. While there is some data out there supporting coffee (and lots of other substances) in the effort to control, cure, or prevent cancer and melanoma:
https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=coffee
– they are referencing it as something one ingests orally rather than up the old poop shoot.
I hope that you have made your oncologists aware of ALL your alternative treatments/supplements as they are not always benign. Here is evidence to support that statment:
As to your comment…."during my own extensive research into stage IV survivors of any cancer I have found that they have all changed their diets among other things."
ALL????? Hmmm….it seems you missed a good many of us on this board!!! I am a 16 year melanoma survivor (and researcher)!!! Further, I have been a Stage IV melanoma patient for 9 years and NED for over 8!!!!!!!! Having SURVIVED melanoma brain and lung mets (treated with SRS to the brain, surgery to the lung, and nivolumab [opdivo] as a single agent in a 2 1/2 year trial) with NO FURTHER TREATMENT, LIFE STYLE, or DIET CHANGES!!!!!!!!!!!!!!!!
That said, I DO believe in ANYTHING that will aid melanoma patients, so long as there is data to support those claims. I do believe in eating a healthy diet. I do believe in a life style that provides exercise, rest, and as much peace of mind as one can attain in a busy world combined with the burden of a melanoma diagnosis. I do believe in personal choice. However, we need to be sure that what we "advise" is described honestly with any testaments based in fact – as in demonstrable data or clearly stated as simply personal experience. Melanoma sucks. Choices are hard and personal.
To each of you, whatever you decide is the best treament option for you – I wish you my best. Celeste
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- January 19, 2019 at 5:00 am
The first thing I did when I knew I have multiple tumors throughout my body was google stage IV survivors and watched every video I could find. I picked up on few things each said and researched it further in detail. I went to two medical drs who are also naturopathic oncologists and have a long waitlists. Of course being stage IV and not even diagnosed with melanoma I was placed on emergency waiting list. From my own research, they reconfirmed most of what I knew. Once I had my liver biposy results and melanoma stage IV was confirmed, they even went further and explained how alternate treatments are done in Europe. Cancer is a systemic disease and melanoma is no exception and should be treated as such. I am by no means against current medical treatments which should be first line of course but I would not rule others. Eating organic fruits and vegetables and prividing your diseased body with proper nutriotion it needs cannot be a bad thing for anyone much less a melanoma patient. Besides, I thought we live in a free country and are able to make our own decisions after we are well informed. All I was trying to do is to provide information which helped me and that may be helpful to others. God only knows that conventional medicine doesn't have the answer to all our issues as many patients have recurrances of disease. I am not selling anything that you cannot purchase in a local grocery store and have no self-interest of any kind. No "Miracle Cures". in the end, it's just a suggestion and let everyone make their own choices.
Melanie
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- January 20, 2019 at 6:13 am
Actually my oncologist at Beaumont hospital recommended my naturopathic oncologist as a part of an integrative medical team which includes physiotherapists, dieticians, etc. all to help fight cancer. Life has thought me that there is always more than one way to skin a cat and since I plan to be here for a long time I will fight with all I have. We all have choices. After all why are we here? I am here to learn from each other, share our experiences and provide encouragement and support. By the way, eating 80% organic fruits and vegatables and 20% other will not be detrimental to your health. To each his own. I wish you the best.
Melanie
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- January 20, 2019 at 6:37 pm
Melanie,
I often buy organic fruits, vegetables and milk. Growing organic crops is good for the environment and safer for farmers. However, I have seen no evidence that eating organic food helps in cancer treatment. Nutritional supplements are not regulated in the United States. You never know what is in a nutritional supplement. It is safer to avoid nutritional supplements. Organic food must meet government standards. Organic food is as safe as other food.
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- January 16, 2019 at 12:47 pm
Hi Melanie, I will let Celeste's post stand as my response as well. When, I read bull shit about Gerson, I tend to go off, so I was glad to see Celeste gave you a polite respond to your dangerous and not accurate advice. I am living proof that bad eating habits and no exercise during treatment and oh ya lot's of rum+ coke cures melanoma!!! Now, would any sane person take that advice and run with it as a treatment approach!!! But it is my testimonial of my melanoma journey with melanoma in my brain and lung over the last 5.5 years, oh, I forgot to add that I also had SRS radiation to my brain and Nivo treatments going on 5 years for what that is worth!!!!
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