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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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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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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Anonymous's picture
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.




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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?








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


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?



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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.



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carol b's picture
Replies 13
Last reply 9/29/2011 - 7:10pm

I was wondering if anyone on here can tell me about having a baseball size melanoma tumor removed from under they arm. What all do they cut out and what am i to expect pain wise and recovery time. I am a little scared and concerned. Any comment will be appreciated because i have been looking it up on the computer on other sites and it seems like a horror story so i thought someone on here has had it done and could give me some correct advice.. Thank You in advance...

Carol b

Believe all thing are possible, believe faith can move mountains, believe in the healing power of prayer and never ever give up on your dreams

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mwilson's picture
Replies 5
Last reply 9/29/2011 - 5:04pm


I'm new and hate to meet you all this way.  I was diagnosed as a Type II diabetic last July 2010.  This July 2011 I had a mole on the back of my calf looked at by  a dermatologist and after excision and biopsy, found it was melanoma.  Since it was deep, I then had a WLE and a SLNP with finding of one micro metastis.  Well, so much for happy news in the month of July!

I'm Stage IIIa. I've just had a brain MRI and will have a CT/PET tomorrow and then meeting with the oncologist next week.  He is setting up a referral for me with UofA AZ Cancer Center in Tucson.  Dr. Cranmer. 

The surgeon has recommended that the rest of the lymph nodes be removed.  My hesitancy lies in the fact that my mom had lymphadema and I fully understand the problems managing it.  I did find a meeting at the Phoenix Wellness Community next week that focuses on lymphadema so will go there open minded and increase my knowledge.  I'm just not sure of having the surgery. 

The oncologist and I have talked about 4 weeks of interferon.  My question is - is there any problem with taking metformin and interferon that anyone knows of?  The doctor was looking on line and could not find a reference. 

We are thinking that I just monitor my blood glucose more closely than I usually do.  I don't have a problem with high reading - I'm kind of middle of the road but under decent control with an A1C of 6.4.

Thanks for all the information that you put on this board.  It has surely made me more educated.




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piii's picture
Replies 12
Last reply 9/29/2011 - 7:20am

New to this site and to tell you the truth I never talk on boards but I never thought I would have cancer. I was diagnosted on 7/21/11 with a depth of 1.45mm no ulceration. I had the node bi and left arm pit was pos. I am waiting for my drain to be removed after having 41 lymph nodes removed from my left are pit. The drain has been in for 4 ½ weeks and can’t wait to get it out of me. Looks like Friday. One node came back with melanoma but the doctor said it was extranodal extention present.  My question is should I push for Radiation. I see from the board that melanoma is resistant to radiation but I am concern about cancer cells “floating” around and finding an organ. Also they tell me the risk for recurrence is higher because of extranodal extention.  Is that the case? Also I do plan to start interferon as soon as the drain is out. I am a young man at 41 and want to do everything I can to fight this. Anyway thanks for reading.


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Charlie S's picture
Replies 12
Last reply 9/29/2011 - 6:13am

Though I have my own standard for flu shots, wondering what other peoples  oncs are telling those who are undergoing or who have underwnet  treatment  for melanoma.

A nuance to be sure, but I am curious knowing that melanoma is the sum of all the parts and not singular.


Charlie S

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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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sss's picture
Replies 4
Last reply 9/29/2011 - 2:46am

Just finished 2nd month of Zelboraf treatment. Appointment with oncologist went very well. Labs are still improving and several subq tumors are no longer palpable!  Scans set for end of 3rd month of therapy as was set up by the clinical trial protocol. Have received 3rd month commercially from specialty pharmacy without issue, since trial now ending.

Remaining hopeful and positive that results continue to be positive


Life goes on as usual. There is no other way.

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