MPIP: Melanoma Patients Information Page

The MPIP is the oldest and largest community of people affected by melanoma hosted through the Melanoma Research Foundation. It is designed to provide support and information to caregivers, patients, family and friends. Once you have been touched by melanoma—either as a patient or as a family member or friend of a patient—you become part of a community. It is not a community anyone joins willingly. But if you must be part of this group, you will find no better place to find the tools you need in your journey with this cancer, and the friends who can make that journey more bearable.

The information on the bulletin board is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

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Draino's picture
Replies 2
Last reply 1/28/2013 - 10:33pm
Replies by: Rick from NC, NYKaren

Have you taken IL2?  Do you have any lingering side effects over time?

I had 54 doses of IL2 4 years ago and continue to have problems with hearing, memory and focus.

Trying to determine if this due to IL2 or if there are other factors involved.  I do not believe it is related , but just want to check.  I am in my mid forties, so hopefully I am not aging to quickly :)

I am still NED, so I am very grateful for IL2. 

I am also thankful that IL2 is not the only durable treatment available now. 

thanks for any feedback.

"By Endurance we Conquer" by Ernest Shackleton

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Anonymous's picture
Anonymous
Replies 4
Last reply 1/28/2013 - 8:41pm
Replies by: Janner, Anonymous

I have received many biopsy report before but this one I am having trouble decoding.
The biopsy ......... is an inflamed compound nevus with partial dermal regression.
Any help would be appreciated.

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Hello to all the old timers. Allen Carr from here in MIami FL Checking in. IT has been over three years since I visited the MPIP. I have been doing fine. Last three or Four PET/CAT scans have been negative. Shaking hands with NED again. For you that don't know me I have been dealing with Melanoma since 1996 when a spot on my back started bleeding and biopsy showed it to be Melanoma.  IN 1999 it went into both lungs. Surgery for both a week apart. In 2002 it went inot my Pulmonary artery even after a year of interferon and 32 months of GM-CSF. God has been good to me and through of holistic medicine I am no longer a Stage IV  person but now NED. Just thought I would check in and thank again all the people that have helped me in the last 17+ years of deealing with this Insidious disease. I talked to Jeff Patterson the other day for a short talk. Keep in touch with Martie Wrock another loing time survivor. I miss the old BB people but not the agrevation that sometimes went on. 5 years ago I was diagnosed with prostate cancer but it is under control with the hormone therapy "Lupron" last PSA was 0.3

Some of you people met my wife Carol in get togethers but I lost her to Brain Cancer last May. She is in a better place no Pain no more Chemo or surgery. I have her up in Lake Worth at the south FL National Cememtery and visit her often.

 

My Pat Net is under Allen C and I believe my home phone number is listed. MY email is redneck_77@att.net if any one wants to get in touch with me. I turned 79 this month and feeling fine and willing to help anyone that wants to hear about my road to NED.

 

May GOD Bless each and every one of you dealing with this disease and if there is anything I can do please email me and we can talk.

 

Allen Carr

Have a great day and a better tomorrow

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Anonymous's picture
Anonymous
Replies 0

I have received many biopsy report before but this one I am having trouble decoding.
The biopsy ......... is an inflamed compound nevus with partial dermal regression.
Any help would be appreciated.

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Anonymous's picture
Anonymous
Replies 0

I have received many biopsy report before but this one I am having trouble decoding.
The biopsy ......... is an inflamed compound nevus with partial dermal regression.
Any help would be appreciated.

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Gene_S's picture
Replies 8
Last reply 1/28/2013 - 12:37pm
Replies by: Gene_S, Linny, JerryfromFauq, jag, Anonymous

I wonder how many people drink and eat this poison and then also use sunscreen/sunblocker and can't figure why they have melanoma?

---------------------------------------------------------------------------------------------------------------------------------------------------

A KILLER IN YOUR FRIDGE

SWEET POISON..A MUST READ !!!

In October of 2001, my sister started getting very sick She had stomach spasms and she was having a hard time getting around. Walking was a major chore. It took everything she had just to get out of bed; she was in so much pain.

By March 2002, she had undergone several tissue and muscle biopsies and was on 24 various prescription medications. The doctors could not determine what was wrong with her. She was in so much pain, and so sick she just knew she was dying.

She put her house, bank accounts, life insurance, etc., in her oldest daughter's name, and made sure that her younger children were to be taken care of.

She also wanted her last hooray, so she planned a trip to Florida (basically in a wheelchair) for March 22nd.

On March 19, I called her to ask how her most recent tests went, and she said they didn't find anything on the test, but they believe she had MS.

I recalled an article a friend of mine e-mailed to me and I asked my sister if she drank diet soda? She told me that she did. As a matter of fact, she was getting ready to crack one open that moment.

I told her not to open it, and to stop drinking the diet soda! I e-mailed her an article my friend, a lawyer, had sent. My sister called me within 32 hours after our phone conversation and told me she had stopped drinking the diet soda AND she could walk! The muscle spasms went away. She said she didn't feel 100% but, she sure felt a lot better.

She told me she was going to her doctor with this article and would call me when she got home.

Well, she called me, and said her doctor was amazed! He is going to call all of his MS patients to find out if they consumed artificial sweeteners of any kind. In a nutshell, she was being poisoned by the Aspartame in the diet soda.. and literally dying a slow and miserable death

When she got to Florida March 22, all she had to take was one pill, and that was a pill for the Aspartame poisoning! She is well on her way to a complete recovery. And she is walking! No wheelchair! This article saved her life.If it says 'SUGAR FREE' on the label; DO NOT EVEN THINK ABOUT IT!I have spent several days lecturing at the WORLD ENVIRONMENTAL CONFERENCE on 'ASPARTAME,' marketed as'Nutra Sweet,' 'Equal,' and 'Spoonful.'In the keynote address by the EPA, it was announced that in the United States in 2001 there is an epidemic of multiple sclerosis and systemic lupus. It was difficult to determine exactly what toxin was causing this to be rampant. I stood up and said that I was there to lecture on exactly that subject.

I will explain why Aspartame is so dangerous: When the temperature of this sweetener exceeds 86 degrees F, the wood alcohol in ASPARTAME converts to formaldehyde and then to formic acid, which in turn causes metabolic acidosis. Formic acid is the poison found in the sting of fire ants. The methanol toxicity mimics, among other conditions, multiple sclerosis and systemic lupus.

Many people were being diagnosed in error. Although multiple sclerosis is not a death sentence, Methanol toxicity is!

Systemic lupus has become almost as rampant as multiple sclerosis, especially with Diet Coke and Diet Pepsi drinkers.The victim usually does not know that the Aspartame is the culprit. He or she continues its use; irritating the lupus to such a degree that it may become a life-threatening condition. We have seen patients with systemic lupus become asymptotic, once taken off diet sodas.

In cases of those diagnosed with Multiple Sclerosis, most of the symptoms disappear. We've seen many cases where vision loss returned and hearing loss improved markedly.

This also applies to cases of tinnitus and fibromyalgia. During a lecture, I said, 'If you are using ASPARTAME (Nutra Sweet, Equal, Spoonful, etc) and you suffer from fibromyalgia symptoms, spasms, shooting, pains, numbness in your legs,
Cramps,
Vertigo,
Dizziness,
Headaches,
Tinnitus,
Joint pain,
Unexplainable depression, anxiety attacks, slurred speech, blurred vision, or memory loss you probably have ASPARTAME poisoning!' People were jumping up during the lecture saying,'I have some of these symptoms. Is it reversible?'

Yes!
Yes!
Yes!
STOP drinking diet sodas and be alert for Aspartame on food labels! Many products are fortified with it! This is a serious problem. Dr. Espart (one of my speakers) remarked that so many people seem to be symptomatic for MS and during his recent visit to a hospice; a nurse stated that six of her friends, who were heavy Diet Coke addicts, had all been diagnosed with MS. This is beyond coincidence!

Diet soda is NOT a diet product! It is a chemically altered, multiple SODIUM (salt) and ASPARTAME containing product that actually makes you crave carbohydrates.

It is far more likely to make you GAIN weight!

These products also contain formaldehyde, which stores in the fat cells, particularly in the hips and thighs. Formaldehyde is an absolute toxin and is used primarily to preserve 'tissue specimens.'

Many products we use every day contain this chemical but we SHOULD NOT store it IN our body!

Dr. H. J. Roberts stated in his lectures that once free of the 'diet products' and with no significant increase in exercise; his patients lost an average of 19 pounds over a trial period.Aspartame is especially dangerous for diabetics. We found that some physicians, who believed that they had a patient with retinopathy, in fact, had symptoms caused by Aspartame. The Aspartame drives the blood sugar out of control. Thus diabetics may suffer acute memory loss due to the fact that aspartic acid and phenylalanine are NEUROTOXIC when taken without the other amino acids necessary for a good balance.

Treating diabetes is all about BALANCE.. Especially with diabetics, the Aspartame passes the blood/brain barrier and it then deteriorates the neurons of the brain; causing various levels of brain damage, Seizures, Depression, Manic depression, Panic attacks, Uncontrollable anger and rage.Consumption of Aspartame causes these same symptoms in non-diabetics as well. Documentation and observation also reveal that thousands of children diagnosed with ADD and ADHD have had complete turnarounds in their behavior when these chemicals have been removed from their diet.

So called 'behavior modification prescription drugs' (Ritalin and others) are no longer needed.Truth be told, they were never NEEDED in the first place!Most of these children were being 'poisoned' on a daily basis with the very foods that were 'better for them than sugar.'It is also suspected that the Aspartame in thousands of pallets of diet Coke and diet Pepsi consumed by men and women fighting in the Gulf War, may be partially to blame for the well-known Gulf War Syndrome.

Dr. Roberts warns that it can cause birth defects, i.e. mental retardation, if taken at the time of conception and during early pregnancy. Children are especially at risk for neurological disorders and should NEVER be given artificial sweeteners.

There are many different case histories to relate of children suffering grand mal seizures and other neurological disturbances talking about a plague of neurological diseases directly caused by the use of this deadly poison.'

Herein lies the problem: There were Congressional Hearings when Aspartame was included in 100 different products and strong objection was made concerning its use. Since this initial hearing, there have been two subsequent hearings, and still nothing has been done. The drug and chemical lobbies have very deep pockets.

Sadly, MONSANTO'S patent on Aspartame has EXPIRED! There are now over 5,000 products on the market that contain this deadly chemical and there will be thousands more introduced. Everybody wants a 'piece of the Aspartame pie.'I assure you that MONSANTO, the creator of Aspartame, knows how deadly it is.

And isn't it ironic that MONSANTO funds, among others, the American Diabetes Association, the American Dietetic Association and the Conference of the American College of Physicians?

This has been recently exposed in the New York Times. These [organizations] cannot criticize any additives or convey their link to MONSANTO because they take money from the food industry and are required to endorse their products.Senator Howard Metzenbaum wrote and presented a bill that would require label warnings on products containing Aspartame, especially regarding pregnant women, children and infants.

The bill would also institute independent studies on the known dangers and the problems existing in the general population regarding seizures, changes in brain chemistry, neurological changes and behavioural symptoms.
The bill was killed.It is known that the powerful drug and chemical lobbies are responsible for this, letting loose the hounds of disease and death on an unsuspecting and uninformed public. Well, you're informed now!

Please print this out and/or e-mail to your family and friends.

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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My father's melanoma has unfortunately spread to the liver, lungs and bone, in addition to still being in the original site in the foot.  Does anyone know of any late stage clinical trials that might be available?  I have heard there are some specifically to late stage melanoma. His doctors are starting him on a new round of chemotherapy again and radiation for the foot, but he really needs a systemic treatment.   He received Yervoy and MDX1106 in a clinical trial last year but that didn't work at all, and then he was excluded from future trials b/c his creatinine was affected.  He received chemo and an isolated limb infusion.  Nothing worked.  As you can imagine, we are all in shock and desperately seeking another opinion.  Do you know of anything that might be out there?  He is currently getting treatment from Sloane Kettering.

Thank you.

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Rick from NC's picture
Replies 2
Last reply 1/28/2013 - 11:42am

Is anyone planning to go to the UNC Melanoma Symposium in Chapel Hill on Feb 6?

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squirrell68's picture
Replies 2
Last reply 1/28/2013 - 1:01am
Replies by: Ali, jag

I haven't posted for a little while but just a quick recap, my brother has received biochemo at the Sheba Centre in Israel for liver and brain mets. His brain mets were treated with SRS in August. He has an unknown primary with suspected mucosal melanoma. He has now completed five cycles and has had a partial response, last MRI was clear and the liver mets reduced by about 80%. He is feeling really well, back at work and exercising. He is BRAF and CKit negative.
His Oncologist is now recommending ipilimumab as the next step. I would like to hear from any of you who have gone onto ipilimumab after biochemo, I was thinking he would continue on IL2 low dose as maintanance but maybe this is only if you have a CR, we have lots of questions to ask next week but any advice would be great. Tracey

Determine to keeping fighting.

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Redhorse's picture
Replies 3
Last reply 1/26/2013 - 11:00pm
Replies by: Gene_S, Redhorse

Just had more melanoma cut off right shoulder. Also have metastic prostate cancer. Have been having severe pain in left armpit, and down left side, and arm. Had biopsy and Dr. Had to cut below left shoulder blade, and go inmwith his hand to find out what type of cancer I had for the prostate cancer.

Going in for another CT scan. I believe most of this is from agent orange. Got ischemic heart disease, stent inserted in 2011. Worried that I might be doming down with non hopkins lymphoma.

Anyone here dealing with pain inmthe armpit?

Mike

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Anonymous's picture
Anonymous
Replies 0

  As a stageIV paient  I am wondering if the new drugs rumored to be approved this year can be expected to be covered by insurance plans?Does any one have any idea what the costs of treatment  might be ex: anti-Pd1 and the other one I can not recall .Mind is having trouble focusing today for some raeson.Any thoughts on subject or info  greatly appreciated.  Thanks

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alankravitz's picture
Replies 3
Last reply 1/26/2013 - 11:50am
Replies by: aldakota22, Anonymous

I am a Stage IV melaonoma survivor and melanoma activist. I have been invited to participate in the Patient-Centered Clinical Trial Summit at the Partnership in Clinical Trials Conference. This gives me a unique opportunity to present a patient perspective to key stakeholders in Pharma, the CRO industry and the regulatory community. I am looking for additional patient input concerning the design, conduct, financing and analysis of clinical trials as well as the regulatory process.

The entire Translational Research Model in the US and internationally is under scrutiny by groups at home and abroad. ( see for example: the Conference on Clinical Care Research sponsored by the Friends of Cancer Research in November of 2012). We are close to significant changes in how our FDA will regulate Breakthrough Therapies under PDFUA 5. However, the international picture is not as good: requirements for approval such as  endpoint selection, randomization, comparator arms, use of placebos, and etc. are all based on antiquated notions of what constiutes scientific proof. They treat all diseases alike, they were designed to evaluate synthetic chemical treatments. They do not recognize that critical diseases like metastatic melanoma require a different approach to clinical trials because too many people are dying and because new targeted and immunologic therapies may not yet cure but have higher response rates, more durable responses, more tolerability and more practical benefits than the Starndard of Care. With the globalization of the pharmeceutical marketplace and the globilization of clinical trials to reduce costs and problems of patient recruitment, the problem of  differential standards has been exacerbated. I intend to use as an example the recently announced BMS Phase 3 trial NCT01721772) of anti-PD-1 (BMS-036558). It is the breakthrough therapy that saved my life (Extended 1B Trial) and an excellent example of the need to change regulatory practices and trial design now. As I am fond of saying , we need anti-PD-1 and we need it now!  If we want participatory medicine, we must participate not only at the level of personal choice but at the policy level.

As I prepare my thoughts, I need to know yours. You may respond here or to me directly at alankravitz@aol.com if you desire your comments to be kept private.

Alan

Make it Happen

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Carolmcq's picture
Replies 8
Last reply 1/26/2013 - 11:37am

Hello all,
Over four years ago I completed a month-long intensive interferon treatment and, after a return of the melanoma, I went through isolated limb perfusion. Tomorrow I learn how to put together a leukine injection and administer it to myself. It will be two weeks on, two weeks off for a year. I've read about the anticipated side effects, and am wondering if anyone in the community has experience with this therapy. How much will it impact my day-to-day life? Will I be able to still work a 40-hour week? Do I need to put weekend trips on hold during the two weeks on? Do side effects lessen after the first two weeks?

Thanks for any personal experiences! I realize that each person will experience it a bit differently, but at least your stories will help me prepare.

Best,
Carolmcq

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sjl's picture
Replies 6
Last reply 1/26/2013 - 10:38am
Replies by: Jim M., lou2, NYKaren, Tina D, jcmp

I've posted on here a number of times about my husband's fantastic response to carbo/taxol but it has quit working.  He's developed a new tumor on his neck and one other that had been shrinking is growing again.  He was given chemo in the beginning instead of Yervoy because his tumors were so agressive that there wasn't enough time to try anything else.  He needed a quick response and he got it and continued to respond extremely well until a few days ago when I noticed the new growth.  The chemo began in August.  He's not eligible for a clinical trial because of a second primary lung cancer.  So, for those of you who have been or are on Yervoy, what can he expect?  From what I can gather, it may take awhile for us to see results and I've read about the possible side effects.  First, we have to get it approved by our insurance company.  We have Highmark Blue Cross Blue Shield PPO.  Anyone know if they cover it or not?  We were told that he could continue to work and so on as usual.  Do most of you find that to be generally true?  And do you get good results with it?  There just don't seem to be a lot of options for him.  If this fails they said possibly more surgery or radiation.

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I am a Stage IV melaonoma survivor and melanoma activist. I have been invited to participate in the Patient-Centered Clinical Trial Summit at the Partnership in Clinical Trials Conference. This gives me a unique opportunity to present a patient perspective to key stakeholders in Pharma, the CRO industry and the regulatory community. I am looking for additional patient input concerning the design, conduct, financing and analysis of clinical trials as well as the regulatory process.

The entire Translational Research Model in the US and internationally is under scrutiny by groups at home and abroad. ( see for example: the Conference on Clinical Care Research sponsored by the Friends of Cancer Research in November of 2012). We are close to significant changes in how our FDA will regulate Breakthrough Therapies under PDFUA 5. However, the international picture is not as good: requirements for approval such as  endpoint selection, randomization, comparator arms, use of placebos, and etc. are all based on antiquated notions of what constiutes scientific proof. They treat all diseases alike, they were designed to evaluate synthetic chemical treatments. They do not recognize that critical diseases like metastatic melanoma require a different approach to clinical trials because too many people are dying and because new targeted and immunologic therapies may not yet cure but have higher response rates, more durable responses, more tolerability and more practical benefits than the Starndard of Care. With the globalization of the pharmeceutical marketplace and the globilization of clinical trials to reduce costs and problems of patient recruitment, the problem of  differential standards has been exacerbated. I intend to use as an example the recently announced BMS Phase 3 trial NCT01721772) of anti-PD-1 (BMS-036558). It is the breakthrough therapy that saved my life (Extended 1B Trial) and an excellent example of the need to change regulatory practices and trial design now. As I am fond of saying , we need anti-PD-1 and we need it now!  If we want participatory medicine, we must participate not only at the level of personal choice but at the policy level.

As I prepare my thoughts, I need to know yours. You may respond here or to me directly at alankravitz@aol.com if you desire your comments to be kept private.

Alan

Make it Happen

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