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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Tim--MRF's picture
Replies 1
Last reply 10/2/2011 - 4:02am
Replies by: JerryfromFauq

MRF has established a partnership with Cosmopolitan Magazine.  As part of that we have created a web page for donations.  Anyone who gives $10 or more gets a special bracelet Cosmo designed. 

Here's the neat part.  When you make the donation you have the option of leaving a comment.  The comments people have left are amazing.  Just a few words, but a lot of passion.  We have comments from patients, friends, family members. 

Might be worth taking a minute or two to read through them.  I found it inspiring.  One person is 23 year survivor of Stage III melanoma!

Here's the link:  www.firstgiving.com/cosmopolitan

Tim

 

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LynnLuc's picture
Replies 18
Last reply 10/2/2011 - 4:00am

Two years ago yesterday I had my biopsy at Mayo Clinic and they told me I had stage 4 melanoma. They also said I would be dead in 6-9 months. Happy to report I am still here and still NED. Had my latest scans on June 8 and my booster of MDX 1106!

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then Thorocotomy...now "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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deardad's picture
Replies 4
Last reply 10/1/2011 - 11:38pm

Hi my dad is 10 months down the track after his original diagnosis of stage 3. He had a craniotomy for a single met 5 weeks ago. Now he has 4 mets in liver and one in his spleen. He starts B RAF in a week. A CT scan is organised before he commences the drug but Im wondering why they haven't also arranged an MRI? There is one booked for 2 months after surgery but should we wait this long? My concern is that his original met in the brain doubled in 6 weeks and bleed, and I'm hoping he might be a candidate SRS rather than another craniotomy. What would you do?

Has anyone heard of positive stories with liver mets? My dads cannot be resected apparently. We are living every day like life will end in months and its so heartbreaking. I need some hope.

Nahmi in Melbourne

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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

King/Kathie

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

http://defeatosteosarcoma.org/2010/07/mistletoe-and-solid-tumors/#commen...

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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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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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.

1. http://www.time.com/time/specials/packages/article/0,28804,2075133_20751...

http://defeatosteosarcoma.org/2011/06/cracking-cancers-code/

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.

2.  http://www.sanger.ac.uk/about/press/2009/091216b.html

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

Hi,

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.

A

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Anonymous's picture
Anonymous
Replies 8
Last reply 9/30/2011 - 6:58pm

My husband was diagnosed with Melanoma in May.  He had a swollen gland that the Doctors thought was an infection and after testing it was confirmed that it was cancer.  He had a radical neck dissection in June and the tumor was removed and he is now in Stage 3c and underdoing Interferon treatments.  So far everything has been going pretty good until two days ago when he noticed a bump on his neck near the surgery site.  He is going to see the oncologist tomorrow to have it checked out but I was wondering if anyone has experienced this?  I'm wondering if it could be an infection or if it is another tumor.

As many of you can relate, our life has been turned upside down.  He is 42, we've been married for 19 years and have two teenagers.  He is the love of my life and I worry about him so much.

Thank you

Be a fountain not a drain

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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.

 

Thanks

Peter 

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hi guys, its been 11 years since I was first diagnosed with melanoma. I am still currently Stage iiiib but I am still alive and well even after my third primary melanoma.  I have been doing my best as an ambassador speaking on tv and radio trying to raise awareness of melanoma and helping to raise funds for research to get a cure.  As a long term survivor I hope that for the newbies diagnosed with melanoma that even though this disease can be frightening, there is always hope. dont give up.   

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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?

 

thanks,

Em

 

 

 

 

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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 either...so 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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Terra's picture
Replies 2
Last reply 9/30/2011 - 2:41am
Replies by: Anonymous, MichaelFL

Hi,

Derek's scans show extensive spreading to the lung, muscle, bone, kidney, and innumerable mets in the liver.  This has really scared us.  He started this trial last Thursday at PMH.  

Is there anyone enrolled or previously enrolled in this phase 1b trial?  If so, could you please share your experiences and hopefully success?

Terra

 

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cdnewt's picture
Replies 7
Last reply 9/30/2011 - 1:00am

Hi all.... thanks for this great board.   I have learned a lot here in a short time.  I am, I think, IIIc (3mm melanoma removed from my back, followed by 2cm wide excision and sentinel node biopsy.  Of the 6 nodes removed, 1 had a macro (>1cm melanoma), and the other, a micro.  

 

Anyways, I am looking for information on the best medical centers dealing with Melanoma.  Right now I've been pointed at Sloan-Kettering, but I was wondering about other opinions and centers I should be aware of as well.

 

thanks.

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