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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nickmac56's picture
Replies 5
Last reply 10/2/2011 - 8:01pm

My wife went in for her second gammaknife treatment to pick off two brain tumors. Her scan was ten days ago. They did the pre-treatment MRI this morning and found three more - all three had emerged during this ten day period. Obviously not a good sign - means the cancer is fast growing up there. She was able to have the gammaknife treatment and they went after all five. They will scan again in 30 days. But likely the next treatment for her head will be whole brain radiation. She's pretty emotionally distraught this evening, even though she came through it fine. No side effects yet, even though one was in the speech center. 

We have the weekend to recover - then she has a golf ball size sub-q tumor on her upper arm removed Monday. Then a week later - maybe start a new chemo. 

This disease is just terrible.


Her motto: "Don't wait for the storm to pass, love dancing in the rain".

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Ashykay's picture
Replies 2
Last reply 9/30/2011 - 7:58am

Just thought I'd provide an update on Mum...and ask for some feedback in the Yervoy area of things.

A couple of weeks ago, my Mum got the ok to start on chemo and then Yervoy with respect to her tumour/s. The doctor said though that she couldn't start until start of October as their lab was closed for renovations, so they couldn't formulate the vaccine for her. This has been an incredibly frustrating and almost ridiculous process. I think it's bull that we have had to wait 4 weeks to get this done just because they are renovating their lab.

Mum has had her pain coming back...last night she was really bad. She will probably be back on morphine soon too (she was on it when intiially diagnosed, but then when she had radiation, although it didn't shwo any progress with shrinking the tumour, her pain signifciantly reduced). I'm really worried that because of these doctors who play with people's lives, this whole Yervoy thing might have come too late. She hasn't had any scans in about a month or two we don't know whether it's growing or what.

I just wanted some feedback as to whether anyone has been in this pain before they start Yervoy and have found that Yervoy has improved it??

Sorry for my angry comments, but right now I am a really worried and scared daughter...and unfrotunately I don't think I could forgive the medical profession for their "renovations" if this has come too late. Need some reassurance.... :(

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Dynasysman's picture
Replies 10
Last reply 10/2/2011 - 9:34am

Just learned that the scans I took yestereday make me NED.  So one year after I first found the lumpy lymph node (Melanoma of Unknown Primary), seven months after a PET-CT revealed a second tumor in the same space (but my ONC misread it), three months after an ultrasound-biopsy confirmed it, I am NED and one-year progresion free.

Look, melanoma is a sneaky, nasty disease, so you never know what comes next.  But for those of you just entering Stage 3 or first discovering an unknown primary, it's not an immediate death sentence.  And for those of you who "got it early", well, maybe you did!

Never give up. Never give up. Never, never, never, never, never give up. WInston Churchill It ain't over 'til it's over. Yogi Berra My 20th anniversary is only 9+ years away. Personally, I'm thinking champagne & oysters. Now I just have to get there

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jaredmiller16's picture
Replies 9
Last reply 10/3/2011 - 7:58pm


Been seeing a derm twice a year for the past five years. Nothing has ever come of it, but my last visit he decided to remove a mole that looked different than it had in the past. Turned out to be Stage 1. He said we caught it early and I have 95% survival rate....But I am not buying. Too many times I have heard of people being diagnosed with Stage 1 and then three, six, or twenty years later they have a reoccurrence. So now, I am stuck in the dead depression funk knowing any day, I am going to be six feet under.

Why does melanoma do this? Especially in comparison to to other cancers? Should the treatment for Stage 1 be changed? Is early detection really the key? Or does it just buy you a few more years? Sorry to sound grim about all this, but so many close to me have died of this evil thing and I think its just about time they found a cure! My mom's doctor said Melanoma is a cancer they're the closest with, but, I'll take that with a grain of salt. Thoughts?

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Terra's picture
Replies 10
Last reply 10/2/2011 - 10:44am
Replies by: Terra, Vermont_Donna, Lisa13

Hi - could anybody who was a late responder to ipi let meknow what your side effects were like i.e. did you get them while on the treatment or not until you were responding?  (I know it is a long shot but just wondering?)

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Anonymous's picture
Replies 8
Last reply 9/30/2011 - 7:55pm
Replies by: JerryfromFauq, LynnLuc, lhaley, jim Breitfeller, Anonymous


I am a newbie & trying to understand the RESPONSE difference between IPI & anti-pd1 or anti-pdl-1

If a patient does NOT respond to IPI, why would the patient possiblly respond to anti-pd1 or anti-pdl-1.

I do not understand that if you take the breaks of your immune system with IPI, how is different than taking the breaks off with anti-pd1 or pdl-1?

Why could a patient who was not a responder with IPI, possible get a response by taking anti-pd1/pdl-1 after taking IPI.

Is taking anti-pd1 drug or taking anti-pdl-1 make a difference? Can you get a  better response by picking one over than other?

Thanks for all you great info.


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piii's picture
Replies 3
Last reply 9/30/2011 - 2:55pm

I am meeting with the radiologist next Tuesday to decide if I will do radiation on my left arm. I had 41 LNs removed 4 ½ weeks ago and one came back with extranodal extention. I started out at RI hospital with a great surgeon and have decided to move to Dana Farber cancer center as they are one of the best in my area. I have not seen a medical oncologist at RI but my surgeon there does not think the risk is worth the benefits. My oncologist at Dana Farber is on the fence and leaning toward not doing it. She did say she would support my decision.  So I was for doing it but now I am on the fence.


Anyone out there that has gone through this? I would appreciate your input.




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Lisa13's picture
Replies 8
Last reply 10/2/2011 - 7:23am

I caught my daughters cold yesterday which happens to be the first cold I've had in a year.  I had my 3rd infusion of Yervoy last Thursday and was wondering if being sick and having a weakened immune system (at the moment) is going to affect this drug.  I know we're all bound to get sick during the cold/flu season, but I hate feeling defenseless right now when all I want is a powerful immune system. 

Lisa - Stage 4 - lung mets

Many impossible things have been accomplished for those who refuse to quit

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Earlier studies have shown that many forms of tumour also have a higher expression of the COX-2 enzyme, which is not found in normal tissue but which plays a key part in inflammations and the development of cancer. As regards tumours, it has previously been shown that for unknown reasons COX-2 is induced in tumour cells; a phenomenon often associated with poor prognoses. Further, the knowledge that COX-2 inhibitors reduce the risk of cancer has led to their use in clinical studies for cancer prevention. CMV in turn, greatly and specifically stimulates the synthesis of COX-2 and is thus a possible control signal for tumour growth. COX-2 inhibitors also reduce the production of CMV. The researchers now show in their paper, which is published in the Journal of Clinical Investigation, that tumour growth decreases when CMV is inhibited.

"Our experiments on mice show that tumour growth declines by around 40 per cent when antiviral drugs or COX-2 inhibitors are used separately, and by no less than 72 per cent when used in combination," says Professor Söderberg-Nauclér, adding that this effect is achieved without using chemotherapy.

I'm me, not a statistic. Praying to not be one for years yet.

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JerryfromFauq's picture
Replies 4
Last reply 10/1/2011 - 10:47am

Mistletoe and solid tumors


Posted 19 Jul 2010 in General Cancer Research

One of the most obvious differences in the practice of oncology in the United States and in Europe is the differing attitude towards mistletoe (Viscum album). European oncologists have used extracts of mistletoe for the past 90 years and such usage is no longer controversial there. By some estimates, 40 percent of French (Simon 2007) and up to 60 percent of German cancer patients receive this botanical extract (Schönekaes 2003). On the other hand, the use of Iscador and other mistletoe extracts is virtually unknown in the United States. Both Europe and the US have well trained and highly competent oncology communities, yet they differ profoundly on this, as well as a number of other issues concerning cancer treatment. This difference is a vivid illustration of the effects of cultural norms on medical practice (Payer 1998).
Iscador is an extract of the white berries of the mistletoe plant, an unusual evergreen plant that grows as a kind of parasite in trees across Europe. Globular mistletoe is a familiar sight in Germany, especially in the winter when it stands out in the bare branches of various deciduous trees. Mistletoe has a fascinating history. According to Roman authors, mistletoe was used medicinally by Celtic priests, who gathered it using golden scythes (to avoid contaminating the specimens). Much later, Rudolf Steiner (1861-1925), the founder of Anthroposophical Medicine, introduced as a cancer treatment (Steiner 1985).
The key question is whether mistletoe has anticancer effects or not. If it does not, then European doctors should stop using it (or recognize it as a placebo). If it does work, then American oncologists should adopt it as a useful adjunctive therapy. (No one I know regards it as a cure).
Earlier this year, I discussed several positive studies with mistletoe. Since then, several additional studies have added weight to the pro-mistletoe argument. Jessica Burkhart, Stephan Baumgartner, et al. of the University of Bern, Switzerland, investigated the effects of mistletoe on the adverse effects of the drug cyclophosphamide (Cytoxan) in cell line studies. The article appeared in Alternative Therapies in Health and Medicine in May-June 2010. The experiment involved normal white blood cells (peripheral blood mononuclear cells, or PBMCs) as well as a T-cell leukemia Jurkat cell line. Cells were first pre-incubated with mistletoe extract. Then a form of cyclophosphamide was added. After that, mitochondrial activity and replication were both measured.
The results were that mistletoe extract “strongly stimulated” healthy PBMCs but not malignant Jurkat cells. The level of activity of these cells was doubled by the addition of mistletoe (197 percent with the lower dose and 225 percent with the higher dose). In addition, mistletoe partially protected healthy PBMCs, but not malignant cells, from the damage inflicted by cyclophosphamide.
This is further scientific confirmation of the purported uses of mistletoe to reduce the adverse (side) effects of a widely used form of conventional chemotherapy. Mistletoe exerts immune modulating as well as direct anti-proliferative effects. Mistletoe may also increase levels of various anti-cancer cytokines including tumor necrosis factor (TNF-alpha).

This year, at the American Society for Clinical Oncology (ASCO) meeting, Washington DC scientists presented the results of a phase I clinical trial on the use of European mistletoe extracts and the drug gemcitabine (Gemzar) in patients with advanced solid tumors (Mansky 2010).  Gemcitabine and osteosarcoma The product tested was Helixor (not the more common Iscador). These researchers’ conclusions were highly positive. They reported that the combination had limited toxicity, no alteration in gemcitabine uptake, good tolerability and a clinical benefit in 48 percent of patients. (This contrasts well with previously reported levels of benefit from gemcitabine alone.)
They concluded that the addition of European mistletoe extracts “may allow for use of higher doses” of gemcitabine and that the combination of mistletoe and this drug “warrant further study.”
Studies of this sort continue to chip away at the standard American oncologists’ contention that all useful treatments are routinely employed in US oncology hospitals and that any other ways of treating the disease are without scientific validity. This is simply not true. In fact, American oncologists could learn a great deal from CAM practitioners, if they would recognize that other cultures have different ways of approaching the same problems, and that have something valuable to contribute to the optimal treatment of cancer patients





I'm me, not a statistic. Praying to not be one for years yet.

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JerryfromFauq's picture
Replies 5
Last reply 10/1/2011 - 2:56am

Two interesting articles that shows how the Genome Project has affected cancer research.  The following is just a brief excerpt from the longer articles.


Eager to put genotyping into practice, doctors at MD Anderson and Massachusetts General Hospital, among others, have already begun using sequencing technology to guide treatment of patients in clinical trials. Even without the full genome map of certain cancers, clinicians are using known mutations linked to cancer to dictate which drugs patients receive. In MD Anderson's program, all lung-cancer patients are offered the chance to join a trial in which their tumors are genetically analyzed for some well-known genetic defects thought to play a role in cancer. About 15% of lung cancers, for example, show mutations in a gene that makes a protein critical for cell growth. Patients with this aberration can enroll in trials in which FDA-approved drugs targeting that mutation are being tested as a first-line therapy, instead of chemotherapy, for treating their disease, giving them a head start in gaining any benefits the drugs might provide. (At the moment, these drugs are approved only for patients with advanced cancer for whom other therapies have failed.)

Cancer experts aren't naive enough to believe that sequencing a tumor just once will reveal all they need to know. Cancer is constantly changing its offensive and defensive plans in response to whatever treatments doctors are using against it. The idea is to rebiopsy patients periodically and allow the dynamic genetic changes in the tumors to educate doctors about how aggressive the cancer is, whether it has developed resistance to drugs and even whether it has spread. "The concept is to let the tumor teach us how to treat patients," says Dr. Waun Ki Hong, head of cancer medicine at MD Anderson.

It's all part of the leap toward personalized cancer care, the therapeutic beacon toward which researchers and doctors have been navigating for a long time. "We fully expect that 10 years from now, each cancer patient is going to want to get a genomic analysis of their cancer and will expect customized therapy based on that information," says Brad Ozenberger, TCGA's program director. Only with more individualized therapies that match the right treatment with the right patient at the right time will the battle ultimately be won.


16th December 2009    Malignant melanoma genome contains 33,000 mutations

I'm me, not a statistic. Praying to not be one for years yet.

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King's picture
Replies 25
Last reply 10/1/2011 - 1:04pm

I know we all need to read some good news to balance the bad and sad news that is a reality on MPIP.

I am thrilled to report that I just returned from Moffitt and I remain NED at Stage IV.  My profile is up to date and I'll give a brief summary when I sign off this post.

Yes, I've had ups and downs like so many of us.  Yes, I have some discomfort from the extensive surgeries.  I have challenges with maintaining my weight.  Right now I have a rib fracture that was diagnosed on the scan.  But I am NED.  I wish there was a secret to share.  I know many of you are deep in battle and have to be so discouraged.

It was 6 years ago yesterday that I had my liver resection...70% of my liver was removed.  I was told at that time that if the surgery was not a success (or any of the very limited treatment options back then) that I had 4-6 months to live.

And I now can go 4 months until my next set of scans.

Thinking of all of you.  If I can help in any way, please email me.  Thank you so much for all the support you've given and knowledge you've shared over the 7 years that I now have been on MPIP.

Stay Strong


March 2004  Stage III Unknown primary

April 2004 Left groin lymph node dissection.....NED

May 2004-April 2005 Interferon

July 2005 Liver mets (3.3 cm. Grew to 4.5 cm at time of surgery)

September 2005 Liver resection/Gall Bladder removal....NED

December 2005-November 2006  Phase II Clinical Trial of GM-CSF

March 2008  Peri-Pancreatic Tumor; sub q on left hip/buttock

April 2008 Extensive surgery to remove both areas of mets....NED

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emilypen's picture
Replies 9
Last reply 9/30/2011 - 8:42am

Hi All,

So today we found out the results of Jason's 12 week scans.

Not good, the Dr. said most of his tumours have doubled in size. What is so confusing for us is that some of his sub q tumours have disapeared and others are flattening out and getting smaller. But he has at least

Jason has already been on P13k/Mek inhibitors, Braf inhibitors, Dacarbazine and now IPI. He is not healthy enough to qualify for IL-2 therapy.

Essentially we were given 3 choices;

1. Wait and see if he is a late responder to IPI scan again in 4 weeks and then in another 8 weeks after that.

2. Start a combination chemo on Monday  ( Carboplatin & Paclitaxel) See how he does with side effects and response.

3. stop treatment ( life expectancy less than 4 months)

There is an Anti PD-1 trial possible coming availble in the next few months that if he's healthy enough he may qualify for.

The Dr. said the chemo regimen would not effect the possible continuing effects of the IPI.


I think our main objective is keep him alive with a  good standard of living at least until our baby is born in Febuary. More time than that would be a gift.

Thoughts? Ideas?


Something we may be missing?








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boot2aboot's picture
Replies 7
Last reply 10/14/2011 - 12:26am

I don't know if anyone on this board knows or reads Dr Mercola's blogs...but these last few weeks he has been running stories about Dr Burzynski and how this doctor's drug trial studies got axed by NIH...his study was about certain peptides...whatever...anyway, i hate it everytime there is some sort of 'conspiracy theory'...because it is upsetting to hear people run their mouths about being a 'possible' cure for cancer that was denied by the government because of jealousy, idiocy, whatever and cancer victims missed the boat...

i used to like reading mercola but i am beginning to think THIS guy is a HOAX...and very irresponsible...i would think if there is ANY validity  in regards to burzynski, a drug company would be NUTs not to buy the patent...cures are BIG MONEY...just look at the cost of yervoy...but then again, desperation makes one doubt and doubt....

don't back up, don't back down

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mommymel06's picture
Replies 5
Last reply 10/1/2011 - 3:19am

I am at high risk for melanoma.


History of bad sunburns and over 100 atypical moles. I do not expose myself to the sun anymore...Meaning I COVER UP! Even on 100 degree days, but I have read the "damage has been done" because the burns occured when I was young.

I see the Dermatologist twice a year for a mole scan. However, in the past five years, I have only had four moles removed. All were normal, aside from an atypical mole.

If you were to look at me, you would think that I had melanoma...Seeing as I have so many moles which fit the ABCD discription, I am worried the derms (I usually see two each visit) are missing something. However, the doctors say they're all OK. Even one that recently elevated and got lighter (did not change, shape or size) they said was OK....And I got three opinions.

I know early detection is huge....But I am afried with all these moles, derms will never be able to distinguish between normal and melanoma.


Do you have any advice for me?

Melanoma is such a hard cancer to cure....And it terrifies me.

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