Any metastatic melanoma survivors?

sbillinghurst said:

Update
I asked before whether "it" depended upon diet, but I did not specify what. The next girl said she definitely did not eat sugar. On this page we all have been diagnosed or a loved one has, so it is not about a diet to prevent cancer, it is about a psychological response to the natural impulse to eat food that makes a person healthy but does not feed a cancer, if such food exists. Since the doctors have not said much about diet to me, it is probably harebrained to worry about diet. The cancer is the only thing growing in a cancer patient's body. Stable disease (SD), progressive disease (PD), complete response (CR), partial response (PR), in no particular order, were used by one author
http://jjco.oxfordjournals.org/cgi/content/full/35/9/507
but these are terms for use when radiation, surgery, chemotherapy, and biological therapy might be tried, and people may be switched from one to another in a span of weeks, when life expectancy is on the order of months, and I am glad of that. I bet the growth rate of a cancer depends upon its mutations. I have a fast one. My time scale up there was long. It got to be ten centimeters in its longest diameter (LD), so, these designations are to be taken with a grain of salt. It doesn't have to spread to adjacent lymph nodes, and five years symptom-free is not out of the woods. It doesn't have to metastasize to the most common organs. It's only a little bit predictable. If you don't get it in Stage I the prognosis is grave, no matter how shallow. Getting it means doing more than the doctors are willing to do. Don't be misled by something they say. If you've ever had it, insist on PET/CT scans every six months. It's not really curable. The whole medical approach needs top-to-bottom reform. Why have loved ones drive you home or stay with you in the hospital? Why let dermatologists monitor it without instruments? Why can't a tumor be partially resected? What is it that allows a tumor to have a border with normal tissue which constantly migrates into the normal tissue, vascular, bone, or soft tissue, and become nonresectable by virtue of the necessity for hacking two centimeters into good tissue to allow the wound a clear border to close? It grows quickly and can be found anywhere, so it just kills in almost every recurrent case. It is really two diseases IMO, and the term "early detection" as applied to moles and not metastases, given the long latent period, is medical hogwash.

Since I posted on the sixteenth, Starting Monday, April 26, I am to receive interleukin-2 alone. That is toxic, but it is not enough. It is my belief that vaccines have shown efficacy and should be standard.

ACS:: Dietary Supplements: How to Know What Is Safe:

http://www.cancer.org/docroot/ETO/content/ETO_5_3x_How_to_Know_What_Is_Safe_Choosing_and_Using_Dietary_Supplements.asp

Vaccine
hi, I've seen mention of "vaccines" but didn't see any response on what was in the response about vaccines or what they are to where to find them. Do you have any information you could share? I have a family member w/stage IV melanoma that does not appear to have yet spread to any organs but are knocking on the door. thank you-

Any metastatic melanoma survivors?
Am like you searching for answers My dad had a mole on his cheek we removed it in 2009 and now we found out that it is in lunges and the stomach anyone experience and survived such cancer in those areas?

Same here
Dawn I am 40 and was originally diagnosed with a Clarks level four 15 years ago on my shin. They removed a golf ball size tumor in I'm groin and did A complete node dissection of my pelvic and groin areas this past January. I opted for a trial instead of the chemo because of the sickness and little help it seems with interferon chemo for melanoma. I am not happy for what has happened to you but glad to meet someone who is going through what I am. It is scary. I have two boys 8 & 11 and fighting like you!

Meg1414 said:

Here's another....
I just found this site today and it's amazing that there are so many of us! I was diagnosed 8 years ago with stage 4 metastatic melanoma. It had started as a mole on my left foot and spread to 1 lymph node in my thigh. I did 1 year of interferon, and besides lymphedema in my leg now, I'm doing fine. However, now I am trying to get pregnant. I don't have an oncologist anymore (he retired a couple years ago) and wondered if anyone knows about my chances of getting pregnant after interferon. I remember that they told me there was a chance that I couldn't then, but that was a long time ago. Wishing all of you the best!

How Bad is your lymphadema?
How Bad is your lymphadema? That scares me more than anything. I am back to working about Hal time and I'm a rehab manager in a skilled nursing facility so I'm on my feet all day. I'm also single mom with two kids and my doc keeps warning me about he lymphedema. So I'm just curious how your is and what u are doing with or about it?

snickers1 said:

Melenoma Stage IV
I am new one here. I was diagnosised with Metestatic Melanoma Stage IV. I had a enlarged lymphnode on the L side of my neck. Had surg. to remove 47 lynphnodes on that side and a muscle. We can not find a primary, so this is what scares me. I am on my 4th of 5 radiation treatments. They told me there is no Chemo for Melenoma. Then I will start Luekine an injection for the immune system. Have you started Chemo, I am interested to hear that you are getting Chemo. Let me know how it goes and what it is! Take care

Metastatic melanoma newbie
Hi Snickers1 I was just dx'ed with Metastatic Melanoma, not sure what stage but I also have no known primary. large tumor on right side of my neck. Had a lumpectomy 3 weeks ago, facing Radical Neck Dissection next week. Then Dr. is talking 7 weeks rads and 1 year interferon... (must mean I have at least a year then). But I was on interferon before for my Hep C and it made me so anemic they took me off it after 2 months. I guess I am lucky as my PET scan showed no other cancer, but I have been told that although not unheard of M.M. with no known primary is unusual. I was also told that my kind of melanoma doesn't respond to chemo hence the immunosuppressive therapy. Am I correct in assuming there are other kinds of immunosuppressive therapy meds besides the interferon? This has all just piled up on me in the last month, so I am sort of overwhelmed by it all. If you or anyone could give me some feedback I would really appreciate it.

furkidsmom said:

Metastatic melanoma newbie
Hi Snickers1 I was just dx'ed with Metastatic Melanoma, not sure what stage but I also have no known primary. large tumor on right side of my neck. Had a lumpectomy 3 weeks ago, facing Radical Neck Dissection next week. Then Dr. is talking 7 weeks rads and 1 year interferon... (must mean I have at least a year then). But I was on interferon before for my Hep C and it made me so anemic they took me off it after 2 months. I guess I am lucky as my PET scan showed no other cancer, but I have been told that although not unheard of M.M. with no known primary is unusual. I was also told that my kind of melanoma doesn't respond to chemo hence the immunosuppressive therapy. Am I correct in assuming there are other kinds of immunosuppressive therapy meds besides the interferon? This has all just piled up on me in the last month, so I am sort of overwhelmed by it all. If you or anyone could give me some feedback I would really appreciate it.

Old medication
Interferon will not extend your life one day. More and more clinics give up prescribing it. There are more effective drugs out there now. My first quack prescribed interferon for a year and I did not go back. I knew nothing but got information from an expert on the web and got a different doctor IN THE SAME ONCOLOGY CLINIC who gave me four choices. that quack should have recommended one but thats ok. I have the web and figured out which was the best for me and I am on it now.

Take care of yourself and get another opinion and think about what I said.

God be with you.

Lin

penlop said:

Hi, I'm 33 and I just had whipple surgery to remove a mass in my bile duct. It ended up being melanoma and it has spread beyond the margin. I'm waiting to get my PeT scan and go from there. I'm desperately searching for anyone out there who has had this and has any advice for me especially concerning treatment. I'm so scared, and I have a 4 year old son...I want to fight this but the drs don't offer much hope. thanks, my email address is jpniles@mhtc.net. penny

Trials
Interferon will not help you. See a doctor that can make a vaccine or put you on a trial.

Some vaccines are no good, some are.

I am on MAGE and will know how its working when I have a scan in a couple months.

Take care

Lin

ckeeble93 said:

Intereron A
Carrie,

Hello, my name is Charmaine Keeble, and I live in Alabama. I was diagnosed in 1995, and then again, in 2002, I was diagnosed with stage 4 metastatic melanoma. Like you, I have two daughters ages 15 and 10 now they were 8 and 2 in 2002. I know how scared you must be at this time. If you need someone to talk to call me my cell number is 256.749.1161. I’m not crazy giving you my cell phone number. I just know how nice it is to talk to someone who has had and going through the same experience.

May, will be a year that I have been on Interferon A. I started May 2009 taken daily dosage's Monday through Friday. Since last June, I have been taken "Interferon A" shots three time a week which I give myself at home. The side effects for me were like having the flu all the time when I first started. Body aches, chills (mostly when I was taken it daily at the cancer center), and headaches. The pre-meds help a lot. There were a few times it felt like ice water was running through my blood and mood swings (still have). I have been able to continue with my schedule and my girl’s schedule. I may have slowed down just a bite, but I have learned only to do what you can, and you can’t will either take care of its self or finish it the next day. Remember the only way to being healthy is to take care of yourself first and then others I know it’s hard and to say and do when you have a family to take care. Talk to your girls, and explain to them. What is going own, believe me, I learned this the hard way. I also find it health for my girls to know everything that I am going through, and what they are going through.

I would love to talk more so please do not hesitate to call or email me ckeeble93@yahoo.com with any question you have.

I am David
Dear Charmaine,

Through his faith and a covenant with God, Miracles and medical history have been made.

While in Africa, David was shaving in front of a mirror, when he shut his right eye only to find he had no sight in his left eye. After returning back home to the United States, he went to his doctor and told him of the situation. After two precriptions of antibiotics and many test later the problem was still the same......surgery was required because of a melanoma tumor in the eye. They first wanted to remove the eye; instead they decided to put a radioactive plaque on the eye to kill the tumor at Duke Medical Center. The operation was a sucess; however what happened during or right after the operation was unexpected...

Imagine yourself standing in front of a team of the world's greatest physicians and they are telling you that the tumor dropped cells. You have metastatic melanoma cancer in the lymph system and it has spread throughout your lungs, liver and even in your brain. David was told he was in stage 4. It was so bad they couldn't even give him any experimental chemotherapy. For most people that would be the sound of devastation, and unimaginable questions as to why? To David it was one of the greatest miracle's he ever received. David looked up and thanked the Lord for being so sick that he would not have to die through the poison in chemotherapy, nor suffer the indignity that comes with the treatments. David knew his imune system was working overtime and the experimental chemotherapy would destroy his imune system and any chances of staying alive, due to the severity and advancement of his cancer.

The doctor told David they would try to keep him comfortable until the end. David believed the Lord had other plans and through his faith, the Lord and he could work it out. Find out how the cancer was gone. From any and all physicians the words they are using to describe this incredible happening is ‘miracle or immune’ ?

David will take you on his worldwide adventures where he helped people all over the world, and where his faith was all he had. Learn how David was stripped of everything he was, except for his dignity. See how he fought for the justice and the truth all the way to the Supreme Court of the United States.

Three Swords of One Light/ Seven Miracles of Faith, contains seven miracles which happened in David's life and God's blessings bestowed upon him during his hardest times.

See how his faith actually moved mountains and how throughout his life doors were opened even before David knew he was even going to need it. Most of the time doors were opened only after another door was shut first.

Find out how and why I am still alive and what the the leading physician's in the world are calling a miracle....and medical history. This was in 2004.

jessicarhodes said:

metastatic melanoma
My daughter is 24 and she has it in her brain,lungs.breast,and throat.It metastisized to lungs in November and brain in january. She has done radiation to no avail. And is currently doing rounds of chemo. she has been battling melanoma for 6 yrs now. And yes many have survived this type of cancer. I hope we can add our loved ones to ths list

Keep up the fight, and know there are Survivors!
About 2 yrs ago in Aug. I had melanoma skin cancer on the right side of my back. They removed it and took a lymph node from under my right arm. All margins were clear = no cancer around the skin were the melanoma was removed. Until July 2011 when I had swelling under my right arm. I went in for a CT scan that showed the mass uner my arm was a lymph node and also showed leasions on my liver, left lung and left breast.... they remove the swollen lymph node that was tested positive for Melanoma Metastasis cancer.
Then I went for an MRI on my brain because that is one of the areas Melanoma Metastasis spreads, so they wanted to rule that out..and they did...good brain
They had me go in for a PET Scan to see if the lesions on my liver, lung, and breast were cancer... Mamogram and PET scan showed breast had no cancer
but the lesions on my lung and liver were cancer.
I have been going for chemo through an IV every 3 weeks. In January I will get another PET scan and that will tell me if I will continue with the treatment...do a New treatment...OR...NO treatment.
Although I have only been a Christian for about 10ish years, I put my trust in the Lord and in His Word " The Bible" He says.. He holds me in the palm of His hand, He says ...He will never leave me, His Word says... God will turn bad things into GOOD, His word says that... perfect LOVE throws out FEAR ...and if I have His perfect Love with me, and in me, what can I fear.... His Word says ....GOD has a plan for my life ....and so much MORE....I will hold onto GOD's Promises and Trust that they are for me
And so with TONS of Prayers from TONS of people all over the world.
ME being diagnosed with stage 4 cancer and about 7 Months of blooddraws twice ever 3 weeks and IV Chemo every 3 weeks= the drugs used were Zofram, Decadron, and Dacarbazine.
I was also drinking 4 or more 16oz bottles of waters per day and using high amounts of baking soda brushing my teeth and gargeling with it 2-3 times daily, and drinking it with a maple syrup chaser weekly, and a table spoon of honey with cinnamon weekly, they both helped with being tired and they are also known for healing qualities.
And with TONS of Prayers from TONS of people all over the world on facebook.
I was able to work about 3 weeks out of the Month and although my hair had some falling out it only thinned and I was able to have a short and sassy hair style
And even tough I was not able to find anyone who has had ( the same type of cancer) and was a survivor. I knew that it is GOD alone who HEALS ! and HE Can Do whatever HE will.
==Today I am HAPPY to Say==
I Am Cancer FREE = The PET scan results say NO Cancer.. Praise GOD.
So Keep the Faith and Keep Praying

Surviving
Dawn,

My fiancee had stage four melanoma ten years ago and has survived! He is a true testament to survival. Make sure that you spread the word to others about detecting melanoma early. There are some apps on smartphones for this. Checkout www.moledetective.com.

Kristi