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Any metastatic melanoma survivors?



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dawn144
Posts: 4
Joined: Mar 2003
March 5, 2003 - 7:51pm

3 months ago I was diagnosed with metastatic melanoma in my right frontal lobe. It turned out to be the size of a golf ball when I had it removed in December. I am only 29 and I am wondering if anyone else out there has any similar experiences.

The original melanoma was a small mole on my left arm which was removed when I was 21, 8 years ago. I never thought it would come back and here I am, in Florida, undergoing chemotherapy to battle this horrible disease.

Thanks for taking the time to read this and let's keep being positive so we can beat cancer.

Dawn
dawn144@excite.com

adroegmiller
Posts: 14
Joined: Mar 2003
March 7, 2003 - 5:19pm

Hi. I have not had metastic melonoma. I have had melonoma on my face and it was large and deep. I wanted to talk to you about really beating this cancer. Are you ready to succeed?

dawn144
Posts: 4
Joined: Mar 2003
April 5, 2003 - 3:42pm

Hey there!

I am ready to succeed...I am not ready to be beat, that's for sure. All is well with the chemo..so far anyway. I've had two MRI's so far and they have been clear :)

carrie2010
Posts: 8
Joined: Apr 2010
April 19, 2010 - 10:56am

I will be starting interferon A here in about two weeks, I am scared to death about it. I am 25 years old with 2 young girls , a husband who is in the military ( who will be gone for most of my battle with chemo) and family who is 12 hours away. Is this the type of chemo your on and if so what were/are your side effects? Mine was found in the back of my head with a little bit of lymph node in it. When they did the sentinel lymph node biopsy and removed the margins everything came back clear. The doctor said the chemo is a preventive measure. I am diagnosed with stage 3A. Most of the posts I've read on here says that's a high stage to have. I know your no doctor but from what your told / been through the chances of it coming back are high?

ckeeble93
Posts: 1
Joined: Apr 2010
April 22, 2010 - 10:37am

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.

DynamicDbytheC
Posts: 2
Joined: Nov 2010
November 11, 2010 - 6:45pm

Hi Charmaine,
I am stage 3 but am waiting for the pathololy reports to know what is next. I am scared when I see the range of survival statistics anywhere form 35-65% or less depending where I look.
Thanks for posting and giving me hope.
D

Guardianone 2000's picture
Guardianone 2000
Posts: 30
Joined: Jan 2012
January 8, 2012 - 10:17pm

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.

Guardianone 2000's picture
Guardianone 2000
Posts: 30
Joined: Jan 2012
January 8, 2012 - 10:13pm

Stage 4 met

I went to oncology last week and I was told the tumor in my lung was enlarged. Sarcastically said, my Dr. told me she didn't even need another Dr. to help see what she was looking at, because of the large size. That was the only laughing we were doing.

I knew that she was right, because I have been experiencing pain in my chest, again.
What we are not sure about is what the tumor is doing, because it is now 18 months since I had radiation in that lung and on that tumor. From what I understand 18 months is the time of radiation effects and some of this could be scar tissue or just fluid from the radiation. My oncologist told me she wasn't sure what to do at present and whether or not more radiation treatments could be done, due to the amount given previously.

I told her I was going to my Radiation Cancer Dr. on Friday the December 9, 2011 and we would wait to find out what could be done and more test if necessary. She agreed too, so we are waiting for the next step in my living with melanoma cancer.

Now as a side note: I went to my Eye Dr. at Duke yesterday on December 6, 2011 and again I was given news that my eye condition had deteriorated. I was told because of the radiation to my eye in 2003, my eye had more blood vessels growing inside and cutting off the ability for my eye to release fluids and therefore making my eye pressure to and in unsafe limits.

After consultation with the Dr.'s they decided to inject a medicine in my eye to stop the blood vessels from growing and allow my eye to drain properly. Then they put another needle in my eye to extract some of the fluid that was creating the pressure. Now, when I was done with this procedure the pressure was down to almost nothing and safe. I was given a prescription for more medicine and antibiotics to prevent infection.

I wish I could tell you how this felt, but I do not think you really want to know. They of course said they wanted me back in 6 months and that I might require more injections to fix the problem; however they weren't as optimistic as they had been in the past, because they considered this Glaucoma and I was told it was the worst stage of it and that eventually I could have my eye enucleated, if the pain became too bad. The one thing said that made me feel better was that because I am already blind in my left eye they could use laser to fix the condition or at least lessen the effects.

I will update everyone following my condition after I see the Dr.'s on Friday. Thanks everyone for your prayers and as God has blessed me, I hope and pray for Gods' will to be done and from there I will do whatever He has planned for me.

Please visit my website: bradleydallasnorth.net or .com

rosebud1942
Posts: 1
Joined: Mar 2003
March 7, 2003 - 5:36pm

Hello, I am a thirty year surivor of melanoma cancer to my right leg calf and right hip . I had chemo and radation which I suffer from the damages from them but I am alive.Keep your chin up and smile.E=mail me back and I live in Flordia too.Carolyn

julian
Posts: 1
Joined: Mar 2003
March 9, 2003 - 7:57am

Hi, my name is Julian.
I was diagnosed with metastic malignant melonoma @ 2 years ago. I am doing well, with no problems. I go every 3 months to my oncologist who is very good. I live in New Orleans and the cancer centre I have high regards for. I have read quite a few of the histories and I have not heard of Interferon being used. I was wondering if you were ever offered that option?

Take care Julian

carrie2010
Posts: 8
Joined: Apr 2010
April 19, 2010 - 11:00am

I am getting ready to start chemo and radiation her in about two weeks, if you don't mind me asking what damages did the treatments do to you?

mc1984
Posts: 1
Joined: May 2010
May 9, 2010 - 5:02am

Hi Carrie,

I did interferon back in 2008/2009. We stopped 9 months into the treatments because of neuropathy. I had stage 3 melanoma in 2008. I also had it twice in 1996. I still hurt today because of the neuropathy the pain Never stops. I pray you do not develop to many side effects. I also haven't slept through the night in over a year. I also have many sleepless nights. I quess I could be called Sleepless in Atlanta lol. If you ever need someone to talk to please don't hesitate to contact me.

Mark

APatient
Posts: 5
Joined: Apr 2003
April 7, 2003 - 3:31am

First I d like to ask a question. Why is it
I cannot post a messg on my own here? I see
no where on this board for me to start a new
topic? Why? Can you help?
Next......I had a rare melanoma removed from
my scalp this past Aug. I now have in 2003
a mass inside and on the outside of my spleen
don't know how long its been sitting there.
It was found by accident on a M R I of
abdomen. The melanoma in scalp was a
cellur blue nevus . Anybody have melanoma
show up in there spleen and what could
be done about it. Im being told that
the whole spleen will have to come out.
please respond anybody..............
thanks

penlop
Posts: 3
Joined: Oct 2003
October 11, 2003 - 4:09pm

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

jerseygirl
Posts: 2
Joined: Apr 2001
October 24, 2003 - 7:18pm

Dear Penny, My heart goes out to you. My sister-in-law has just been diagoused with metastatic melonoma. She will know by the eand of next week what her treatments will be. It started with a mole on her arm. Two months ago she had surgey.

It now is in her lungs and back. I have been diagnoused with stage 3 breast cancer. I have had bi- latheral mastectomey.It's been five years. Please don't give up hope. I won't for her.You can't for your child. God Bless You both.

millard
Posts: 9
Joined: Aug 2011
August 15, 2011 - 11:29pm

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

drewherndon
Posts: 1
Joined: Nov 2010
November 18, 2010 - 8:58pm

Try IL2

dfikaris
Posts: 1
Joined: Jan 2004
January 27, 2004 - 8:43am

My good friend was just diagnosed with metastatic melanoma in his left frontal lobe. He had a mole removed 2 years ago from his back and the margins were clear and they thought they got it all. It was 7x5x6 when they removed it. He also has metastases to his lymph nodes and bone. He is married with 2 young boys. Do you know where the best place to go is? Who is leading the way in the area? My prayers are with you and your family.

peterdaly
Posts: 52
Joined: Jan 2004
January 28, 2004 - 2:32pm

I would recommend you look into the clinical trials at the NIH/NCI in Bethesda Maryland. In my mind Steven Rosenburg, MD is THE GUY! You have to jump through some hoops to get into the trials but it is well worth it. I (
stage III, 1 1/2 years from diagnosis) went to their vaccine trial and a good friend of mine (Stage IV) has been in 3 of their trials now with great results. It means traveling (covered by NIH) but it's worth it to work with the world's experts.

NanLHTJC
Posts: 1
Joined: Jan 2004
January 31, 2004 - 5:59am

Peter . . . I am very interested in specifically what were the three kinds of trials that your Stage Iv friend underwent in Bethesda, with Dr. Rosenberg. And could you be more specific on what "doing fine" entails. Thanks NLHTJC

Jdecelis
Posts: 4
Joined: Feb 2004
February 19, 2004 - 9:36am

I was first diagnosed with melanoma 4 1/2 years ago and 1 and 1/2 years ago it became metastatic with multiple tumors on and around my right breast. The original site was on my right side.

I visited a Dr. Morton in Santa Monica, California who injected the tumors with BCG, a tuberculousis vaccine to stimulate the immune response. The tumors began to puss out within weeks and were surgically removed with a mastectomy. A few months later more appeared above the original breast area and again injections into the tumors with BCG. They pussed out and some tumors disappeared and what was removed was necrotic (dead).

Occassional tumors appear on the skin in the same general area and have been removed.

Tried Lukine and Interfuron therapies but became resistant to the first and had lowered white cell counts with the second. Taking nothing now but will cat-scan/contrast or Pet scan in another month.

Most of my doctor friends thought I had 6 months but 18 months later still going strong.

John

ninja
Posts: 9
Joined: Aug 2004
September 2, 2004 - 11:42am

John,

I am very interested in your story. Could you please tell me more about the vaccine you received in Santa Monica. What hospital did you go to?
Thank you and take care,
Ninja

ninja
Posts: 9
Joined: Aug 2004
August 24, 2004 - 12:03pm

Hi Peter,

Could you please tell me more about these vaccin trials?

Thank you.

Ninja

apaige
Posts: 1
Joined: Apr 2004
April 7, 2004 - 6:02pm

my dad was recently diagnosed with metastatic milignant melanoma he had a tumor removed from his lower back but recently found out there are leasions in his brain,and the melanoma spread to his lympnotic system .he is very dizzy,and in pain.if there are any positive and encouraging words from any survivors of this kind please let me know.I am praying everyday ...i am so scared, these are stories you here about and now im living it.

PatCross
Posts: 4
Joined: Sep 2004
September 15, 2004 - 12:31am

apaige, Iam a matastised melanoma survivor I was diagnoised 20years ago I went to the University of Colorado a Doctor Bill Robinson was doing a experimental program with Interferon,I was one of three that survived out of 67 in the study. I know that it is still a very hard cancer to get a hold of,but if you can I would suggest that you call the University and get any information you can about new treatments and where you need to go to get it, good luck to you and God bless your father and family it was the scarious event in my life, please feel free to drop me a line anytime bye PC

grassland
Posts: 1
Joined: May 2004
September 20, 2004 - 8:05am

Dear Dawn, I hope you are well. Please advise as to your current treatment. Have you heard of BRAF? Also, are you getting radiation. I am in Buffalo, NY and my father has metastatic melanoma to the lungs. Please write. Take Care.

yalleh's picture
yalleh
Posts: 35
Joined: Jul 2009
October 15, 2009 - 5:52pm

I have been battling for almost 5 yrs now. I had 5 tumors in my brain, 7 in my lungs and about a dozen others... Down to about half a dozen. The good news is it sounds like yours is a slow moving Melanoma but still the odds arent good. Mine is a very fast moving (uber aggresive) Melanoma.... but I'm uber stubborn and as of late have a chemo that seems to be helping. Keep up the good fight.

ihatemelanoma1
Posts: 1
Joined: Nov 2009
November 2, 2009 - 10:30pm

Hi Yalleh! Right now my nana is fighting melanoma that has spread to her brain. no other evidence of metastatic disease...just poof! to her brain. she is 72 has 2 tumors in her brain and has been treated with interfuron when she was cancer free,brain surgery to remove what they could of the tumor, had SRS on what was left over...which grew, and even after that a second appeared. She's undergoing 14 fractions of whole brain radiation given at a 2.5gy dose. I was wondering what your course of treatment has been? I'm really interested in your story!

Feel free to email me. I would like to chat with someone who has been through this and beat it...I can tell my Nana your inspirational story.

Anyone else who has dealt with Metastatic Melanoma to the brain or who's loved one has dealt with it, feel free to email me as well. Her prognosis is poor and we could use any and all inspiration.

Thank you!!

Kristen
kristensloan@ymail.com

yalleh's picture
yalleh
Posts: 35
Joined: Jul 2009
November 4, 2009 - 9:38pm

My course of treatment is the entire gamet and all the tricks in the book known to Oncologists. I started off with an 8 inch skin removal on my back as wells as all the lymph nodes in my arm pit (from stage 2 to 3). I did 1 month of high dose Interferon followed by 12 months of the inject yourself every second day (this was Stage 3 Melanoma). The tests came back clear with no Melanoma for almost a year after Interferon. It was then found that I had progressed to stage 4, so I become a lab rat for a new trial chemotherapy. After 3 months it showed no progress so I did biochemotherapy along with 3 other known Melanoma chemotherapies (IL-2 + abraxane, decarpozine and one other ). The tumors showed no more progression but it also had not gone away. SO I stayed on Abraxane and decarpazine in the hopes that we could contain the tumors in my hilar lymph node and my upper right lung. We would then remove the lung and lymph node. The tumors did not stay contained, they were now spread all over the lungs and throughout the body (but not the brain). I then went on another trial (which by the way is the one that is working but was not approved by the FDA because it has not shown high enough success). After three months it had further progressed and was now in the brain. I was taken off the trail so that I could get stereotactic raditation in the brain. I had to wait a month (off of treatment) before I could get the radiation on three tumors. So I did the radiation (at which time I now had 5 tumors in the brain but they could only work on three of them). I was then was tested again a month later. This time it showed that the tumors operated on were stable and the other two had gone away. I was then rushed back on the trial that looked like it worked and now here I am.

I'm sorry to say that I cant say I have beat it, I still have tumors in my lungs, brain and throughout the body, but I can say I'm in a much better position than I was almost a year ago.

I can tell you that what helped my wife more than anything is to focus her energy on something positive. She did a walk to raise money for melanoma (the website is AIM for Melanoma). I would also suggest (coming from the side of the person with cancer) that you live in the moment, spend as much positive time with your Nana as possible and if you can only spend a little time with her make sure it is good time for both of you. I know I had to shoulder the burden of many family members and its not fun or easy to do. I know I really appreciated a smiling face and a good joke (even if the joke was at my expense.. not sure if your Nana wants you to make fun or tease her).

Hopefully this helps and good luck for you and your loved ones

shumba
Posts: 5
Joined: Jan 2010
January 4, 2010 - 7:05pm

hi yellah
sorry about your condition,your story is simarlar to my wifes,she had a melanoma removed from her back 4years ago it was huge as it was misdiagnosed as a cyst,2 yrs ago she had a section of her intestine removed as it had colapsed,a melanoma was found inside{again missed}she now has them in her lung and liver and had 2 tumors removed from her brain on the 17/12/09 ,we find out what further treatment is needed this week,what interests me is the treatments you received as up until now they have only monitered her condition,and surgically removed the tumors,did you insist on them or were they offered to you,please let me know if anything has really helped,
keep on fighting and good luck

Misdiag1Fauq
Posts: 5
Joined: Mar 2007
January 21, 2010 - 2:41pm

Has she had the BRAF/NRAS/KRAF or C-kit tests? These are used for targeted therapies that are just in trials.

Terrified_mom
Posts: 3
Joined: Feb 2012
February 13, 2012 - 12:53pm

You are about as close to my son's (26yrs old)diagnoses as anyone here. He was to start a trial that was FDA approved in the USA but not yet available here except by "Special Access" namely the trial. The day he was to start we had our world come down on us and were told he had 7 brain tumours with 2wks without treatment and 2+months with to live... another doctor said with the Radiation he could have as much as 7 months. My son was EXCELLENT health before all this started in fall 2010 and at one point thought we were out of the woods but all that was happening was the hospital just never bothered to call us on the new scans last summer to say it had spread to his Ilium (one on each side) and a sub centimetre lesion within his liver... 3 months wasted before we found out.. well that was Jan 31 2012 when we got the devastating news about the brain tumours and he started Radiation immediately with the drug Decrodan (sp?) he is being weened off at the moment and last night was insanely hard. Tomorrow Valentines Day is his last Radiation treatment and honestly I have no clue what is in store after that until we see the doctor. He did tell us he could do the trial after the brain mets were treated but I have read different since then so just don't know and the emotional roller coaster is brutal for both of us. The steroid is causing rage outbursts and vomitting all kinds of thing thrush can't walk without assistance... ANY of this?? Have you gone thru?? and how are your tumours now? What other things have you tried?? Willing to swap emails/numbers to speak off the discussion boards We are currently doing fundraising to get the funds together to take my son elsewhere for better treatment as our local Cancer Clinic rank the bottom of the list and just last week the Head of Cancer Care at the hospital was let go with a hefty severance for not properly over seeing the program.. BTW WE WILL NOT GIVE UP RESEARCHING OR FIGHTING TO FIND TREATMENT ~ My son is a HARD CORE FIGHTER and we believe there's something out there ~ we just have to keep looking. God Bless everyone on here and may this disease leave your bodies so that you may all,live life with little to no limitations Chele

1drusX
Posts: 1
Joined: Jan 2010
January 22, 2010 - 5:10pm

Dawn,

I had a melanoma tumor removed in 1997 and I'm still here. Mine also started as a mole then invaded my lymph nodes, then my brain. I did radiation and a vaccine study. Jesus got me through it.

I didn't do chemo, just radiation, but I still had trouble eating. It was very important to get good nutrition so I had a ton of juice during that period, and that really helped me out.

Keep smiling, keep laughing, start planning what you'll be doing in five years, pray, pray, pray, and you'll make it!

nmcmcn
Posts: 1
Joined: Jan 2010
January 30, 2010 - 12:12pm

my grandad has 4 metastatic melanoma tumors in his brain that originally came from having a mole cut out of his back 3 years ago. he has had 4 sessions of intense radiotherapy but doctors have said that they can't cure it. I've read that some of you have said that you were given a vaccine test. can you remember the name of the trial?
thank you for help in advance and good luck to everyone !

DynamicDbytheC
Posts: 2
Joined: Nov 2010
November 11, 2010 - 6:47pm

is waiting for pathology reports and scared.

Kisma
Posts: 41
Joined: Dec 2009
January 25, 2010 - 11:35am

I have had two cases of melanoma and several BCC. All of them in moles. You beat it once, you will beat it again and continue to do so. Like many of us here, we pay attention to our bodies and skin. Its a battle we will beat.

Keep your spirits up!

sbillinghurst
Posts: 3
Joined: Apr 2010
April 16, 2010 - 8:37pm

march 1 swelling in armpit
march 10 see doc
march 14 see physical therapist
march 16 see other PT, tells me to see orthopedic surgeon
march 20 ortho orders MRI
march 20 MRI
march 25 MRI leads to referral to oncologist
march 30 orthopedic oncologist is out of network
april 1 appt with oncologist, biopsy
april 4 diagnosis of melanoma, must be stage IV
april 6 PET/CT scan ordered
april 10 PET/CT shows no brain or lung tumors, but tumor is fast growing, has doubled in size, and reaches up above collarbone into neck, inoperable ("nonresectable")
april 14 appt with director of clinical trials, object is to treat systemically.

this means that no tumors can be completely eliminated, just reduced in size. IL-2 however, I believe, has in 10% of cases resulted in complete remission. IL-2 has bad side effects, and I see some stories on that subject here I have not read.

I wonder just when to expect brain tumors. I feel something in my head. Maybe I have been laying in bed too long. Certainly if the doc hasn't started treatment he must believe there is time. But, PET scans can't see a tumor if it is too small, so, if they were already there, how long does it take for them to get large enough to cause symptoms?

Or does it depend on diet?

donnaannand
Posts: 1
Joined: Apr 2010
April 20, 2010 - 1:57am

Hi,

I'm 28 and 3 years ago was diagnsed with melanoma on my back, sentinal node biopsy came back clear however a CT scan last Aug showed it in my lungs stage IV. Doctors wrote me off, i went to mexico on the Issels programme and found it was in my brain so have had gamma knife radiation. I have just returned from the IAT clinic in the bahamas and feel extremely well. Have a CT scan this week and am waiting on the results of yesterdays brain MRI today so fingers crossed. Have changed me diet to organic vegan with fish and am doing juicing, definately no sugar and take lots of supplements, infrared saunas special baths (H2O2 bicarb and epsom salts) and coffee enemas, you name i'll try it!

Not ready to give up by a long shot so will see what results the scans bring!

All the best to everyone.

Donna

sbillinghurst
Posts: 3
Joined: Apr 2010
April 24, 2010 - 10:18am

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

sailingmaxi
Posts: 1
Joined: Jan 2011
January 22, 2011 - 1:22pm

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-

Iwearblackforme
Posts: 6
Joined: Apr 2011
April 10, 2011 - 10:55pm

Hi the cancer vaccines are similar to vaccines for diseases children take. But they are different too. I am in a cancer vaccine trial. My tumor was MAGE-A3 protein based so I am in a trial (phase III CLINCAL NOT FDA approved double blind study) at Emory in Atlanta. It is a nationwide study with about 6 of us in Atlanta in the study so far.
So far side effects are tiredness and they say flu like. I have Just found I was tired and irritable the night of the shot and the next day and a little more emotional. Nothing else really. Don't know what theresults will be yet. Just started this month.

rianna
Posts: 2
Joined: Aug 2010
August 16, 2010 - 1:33am

Hello Donna

How are you? did IAT treatment worked. I am trying to do a search about that clinic if it works for melanoma.

Thank you in advance

Meg1414's picture
Meg1414
Posts: 3
Joined: Aug 2010
August 19, 2010 - 12:30pm

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!

turtlegur_22
Posts: 1
Joined: Dec 2010
December 8, 2010 - 5:52pm

i was diagnosed also with this cancer stage 3 and wanted to get pregnant my doctor from military base said it was fine because interferon is given to pregnant women for other things also not to sure for wat but he said if i had wanted to get pregnant during treatment that i could. and your not on it anymore so should be fine i am only 21 so not sure if age plays a part in this hope this was helpful.

millard
Posts: 9
Joined: Aug 2011
August 15, 2011 - 11:16pm

Increasingly, clinics are giving up interferon as statistics show it will not prolong your life.
You need a better doctor or a better clinic. You are young and need something to effecttively protect you.
If thats all the military will do, then try the VA.

I sure wish you luck.

Lin

turtlegur_22
Posts: 1
Joined: Dec 2010
December 8, 2010 - 5:55pm

Hi, i was diagnosed with this cancer also stage three a , my oncolgist from a military base said it was safe for to get prenant on treatment because they give interferon to pregnant women with other diagnoses not sure for wat exactly but i was told it was safe for me to do so. Im sure sent you been off a while shouldn't be hard, im only 21 but dont think age play a part in this. Well hope this was helpful good luck!!!

Iwearblackforme
Posts: 6
Joined: Apr 2011
April 10, 2011 - 10:58pm

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?

young_survivor
Posts: 1
Joined: Jan 2011
January 18, 2011 - 5:50pm

im not sure about any statistics, but i was diagnosed with melanoma stage 2 in early october 2010 im 14 and had surgery early november 2010 i have a massive scar (8inches ) on my right arm reaching from a bit below my sholder to a bit above my elbow. im pretty sure im the youngest in florida so far

snickers1
Posts: 2
Joined: Jan 2011
January 26, 2011 - 12:56pm

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

furkidsmom's picture
furkidsmom
Posts: 11
Joined: Jun 2011
June 18, 2011 - 11:44pm

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.

millard
Posts: 9
Joined: Aug 2011
August 15, 2011 - 11:13pm

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

Kmilan
Posts: 1
Joined: Mar 2011
March 18, 2011 - 5:22pm

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?

jessicarhodes's picture
jessicarhodes
Posts: 15
Joined: Mar 2011
April 8, 2011 - 10:25am

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

Iwearblackforme
Posts: 6
Joined: Apr 2011
April 10, 2011 - 11:03pm

Wow so sorry to hear about your daughter! Prayer is magical. I had melanoma on my shin 15 years ago and didnt get a single checkup for the past 10 years. I found a lump in my groin by chance in january and am so happy to say it had not spread further. I ha all the lymph nodes removed on my groin and pelvic areas but am not convinced we hot it all because of being told the same thing 15 years ago! I will say a prayer for you and your family!!

Guardianone 2000's picture
Guardianone 2000
Posts: 30
Joined: Jan 2012
January 9, 2012 - 1:22pm

Jessica,

Imagine traveling to Duke Medical Center for what is called a Hail Mary chance for life. A team of physicians, the top oncologist in the world are reviewing your case file and assessing your condition to determine what course of treatment is left or available. When they have completed their evaluation, the decision is made, there is nothing can be done to save or prolong your life.
In 2004, I was sent home with less than 2 months to live (stage 4). The melanoma tumor which started in my left eye had metastasis throughout my lymph system, liver, lungs and brain.

I couldn’t even be given experimental chemotherapy, because it would have no affect crossing the blood barrier in the brain. When the Dr. told me this, I looked up and said, “Thank You Lord, now You and I can work this out together.” My Dr. looked at me like I was crazy and then he told me, “They would keep me comfortable until I was gone.”
As we left the hospital, I was in shock. I had to try and comfort my sister who had driven me that day. I was on large doses of morphine for the pain and was unable to drive myself. She was really upset about what the Dr’s. had said. I told her everything was going to be alright. Everything was in God’s hands, not mine nor the Doctor’s.
On the way home I shut my eyes and started thinking about the things I was going to miss. I wasn’t even going to see my daughter graduate High School later that year.

I thanked God for all the blessing’s I had had in my life. I never asked God to save my life. I did say “Lord, You know I have been all over the world helping people and if it is Your Will for me to come home, then I am ready; however if You give me the opportunity, I will write three books in Your Honor.”

In 2005, I fulfilled my covenant with God and I am here today. I still have seven nods in my lungs. After the second book was written, my doctor’s and I realized I had had a miracle occur. All the cancer was out of my body. I was immediately tested again with cats, pets, bone scans, x-rays and labs.

In May 2010, I had stereotactic radiation to stop the bleeding and kill the nod that grew into a tumor. I’ve had surgery, radiation, pain medicines and thank God for Dr.’s and scientist.
The rest of this story can be found on my website: bradleydallasnorth.net

Don't give up on God or yourself, nothing is easy about this disease.

lloyd03
Posts: 2
Joined: Jan 2012
January 19, 2012 - 8:53pm

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 :D
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

Guardianone 2000's picture
Guardianone 2000
Posts: 30
Joined: Jan 2012
January 21, 2012 - 12:50pm

I am so happy for your inpenetrable Faith. read my stories or articles here and on the messageboard, Spiritual, etc.... does using Jesus' name help or hurt religion. If you need someone to talk to about your situation and cancer I would be honored to share. I always praise God!!! I am also very thankful...

David

Iwearblackforme
Posts: 6
Joined: Apr 2011
April 10, 2011 - 10:40pm

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!

millard
Posts: 9
Joined: Aug 2011
August 15, 2011 - 11:06pm

Yes, I have that too. Went from my arm to my axilla nodes which I had all removed. Surgeons took their time and cut around and may have spread it more. None the less for now they cannot find more cancer.

I am a stage three c.

I got mine around 2009 from a Mexican laser doc that used wrong laser on a birth mark. He knew not to do it but wanted the money.

Brain cancer is a different animal. In San Diego there is a clinic that only treats brain cancer.

How are you doing?

Lin

Terrified_mom
Posts: 3
Joined: Feb 2012
February 13, 2012 - 1:46pm

@ Metatastis (Millard ) PLS tell me about this San Diego clinic ~ PLSSSSSS ~ we can connect offline if you wish swap email/numbers I will give u mine if u r more comfortable that way but just pls promise to call or I can take yours We r willing to listen to anything truthful by those who have been there.

zuhlkekk
Posts: 2
Joined: Feb 2012
February 2, 2012 - 3:23pm

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

felicia_frankli...
Posts: 1
Joined: Feb 2012
February 11, 2012 - 11:40pm

my husband has had melanoma cancer since he was 17yrs old he tried to tell his mom that he had it and she told him he was lying so he just over looked it well when he was about 27 yrs old he was out on his own and decided to start the fight on this cancer thats when he found out what type of cancer he did have when he went to get it checked on it was at stage 3 there was a mole on the side of his face the cancer tumor was wraped around his jaw, eye socket, neck and sholder and going into his tempel region that was all taken out by surgery and he went through radation treatment here locally he had about 9 months of radation then he was in remission for like 7 months it came back around his heart which means he had stage 4 melanoma they put him on IL-2 and VEGF-trap for one treatment his body did well with the IL-2 but the VEGF-trap almost blew up his heart so the stopped the treatment immedatly and after 5 months of the IL-2 treatments it stopped the cancer in its tracks from going any farther to his heart then it shot down to his adrenal glands so they put him on a treatment called Yervoy he has made it past the 4th treatment which is farther than some has made it to hes a little weak on walking and on couple of other things but hes a fighter and he will never give up willingly he will go as far as his mind and body will let him he just had a cat scan today and we go back to Pittsburgh Friday to see how they looked i pray to god that we get good news that it has been treated and is gone....my husband is now 30 yrs old and most of the drs he has seen locally has said he wouldnt have seen til the end of the month, next month, the end of this year, next year, or even see 30 well he has proved all of them wrong he will be turning 31 in August :)