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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Hstevens0072's picture
Replies 3
Last reply 5/21/2013 - 7:46am
Replies by: Hstevens0072, Janner, kylez

....what is the status of the chat room? I've tried to get in a few times recently but just get a blank screen. I thought there was a temporary fix??

"The key is don't go to the funeral until the day of the funeral" ~ Valerie Harper

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Anonymous's picture
Replies 1
Last reply 6/13/2013 - 7:57am
Replies by: gostan


I am new to this forum & I am so lucky I found you. Everyone is so helpful & informative.

I am participating on a MERCK PD1 trial. I have been a completer responder for over 6+ months. I just had my routine MRI Brain & CT scans. My scans showed NO tumors in my body BUT my brain MRI showed a 7MM brain met of the posterior left frontal subcortical.

My doctor is waiting for Merck to decide if I am going to be kicked off the trial. I am not sure if other sponsors (e.g. BMS) let you radiate a brain lesion and then go back on the trial.

I would sincerely appreciate any input about your experience with being on a trial and then getting a brain met. Were you able to stay on the clinical trial?? Did you radiate your brain lesion and the continue with the clinical trial? Who was the sponsor of your clinical trial?

I realize that every clinical trials have different protocols but is there are general rule when it comes to getting a brain met while participating in a clincal trial??

Thank you so much for taking the time to read my post and responding.

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The Melanoma Research Foundation continuously looks for innovative ways to raise awareness of melanoma and push for further research into new treatments.  One of the ways we do this is by speaking with media outlets on important topics related to melanoma education, research and advocacy. 

To help us spread these important messages, we are looking for volunteers willing to share their melanoma experiences with the media.  Depending on the opportunity, this may range from a personal story to a treatment plan.  If you are interested in helping the MRF raise melanoma awareness by speaking with the media about your personal experience, please take a few minutes to complete a short survey by visiting:

Thank you for your consideration.  The MRF will be in touch with you as media opportunities arise that match your experiences.  If you have any questions about this survey, please contact the MRF’s communications manager Lauren Smith at lsmith@melanoma.orgor 202-347-9675. 

With many thanks,

The MRF Team 

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Janner's picture
Replies 2
Last reply 8/17/2013 - 11:45am
Replies by: Anonymous, Kim K


Lungs, back, brain all look good after one round of IL-2.  Still recovering from the stroke and radiation and still experiencing some pain, nausea and fatigue, but at the moment Dian appears to be a complete responder to IL-2.  I'm wishing she dances with NED forever and has a quick recovery from all the rest.



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Ranisa's picture
Replies 2
Last reply 5/22/2013 - 3:28pm
Replies by: Ranisa, BrianP

A friend just called and has been diagnosised with Melanoma.  I am only familiar with docs in the midwest.  Can anyone recommend a dermatlogist and oncologist in the Portland OR area that is a Melanoma specialist?  Thanks!

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Melanoma Treatment Harnesses Immune System to Combat Cancer Cells


Published: May 15, 2013

Cancer researchers are growing increasingly enthusiastic about harnessing the body’s own immune system to fight tumors. And new research shows that two drugs that use this approach may be even better than one.

Researchers reported on Wednesday that a combination of two drugs from Bristol-Myers Squibb shrank tumors significantly in about 41 percent of patients with advanced melanoma in a small study. In few of the 52 patients in the study, tumors disappeared completely, at least as could be determined by imaging.

“I think it was really the rapidity and the magnitude of the responses that was impressive to us,” Dr. Jedd D. Wolchok of the Memorial Sloan-Kettering Cancer Center, said in a telephone news conference organized by the American Society of Clinical Oncology.

Dr. Wolchok’s study, and others on the immune system drugs, will be perhaps the most closely watched items at the society’s annual meeting, which begins on May 31 in Chicago.

The drugs are also generating huge interest on Wall Street, which projects billions of dollars in annual sales. While Bristol is generally considered to have a lead, Merck and Roche are not far behind with similar drugs.

Data released Wednesday from an early-stage study of Roche’s drug, which is known as MPDL3280A, showed significant tumor shrinkage in 21 percent of 140 patients who had a variety of cancers including lung, melanoma and kidney cancer.

The studies are small and they did not compare the drugs with a placebo or with another treatment, and it is unclear if they will lengthen lives. Moreover, it is unclear how long the effects will last, though there are signs that for many patients, it could be a year or more.

Cancer cells often successfully hide from the body’s immune system by preventing T-cells from attacking them. The new drugs basically work by disabling brakes on the immune system, allowing the T-cells to attack the tumors.

One of the drugs in Bristol-Myers’ combination is Yervoy, which was approved as a treatment for melanoma in 2011. Yervoy disables an immune system brake called CTLA-4. It shrinks tumors in only about 10 percent of patients, but the effects can last for a long time.

The other drug in its combination is nivolumab, which is not yet on the market. It disables a brake known as PD-1, which sits on the surface of T-cells. Tumors can produce a protein called PD-L1, which binds to PD-1 and makes the T-cells inactive.

Nivolumab, and the drug being developed by Merck, called MK-3475, are antibodies that bind to PD-1, while Roche’s drug binds to PD-L1. It is not clear yet which approach is better.

It may be possible to test tumors for the presence of PD-L1, and use the drugs mainly for those patients, where it is expected to work more effectively.

It is also not clear yet how many types of tumors the drugs will work for. All the companies are targeting melanoma, a deadly skin cancer, because there is evidence that it is sometimes controlled spontaneously by the immune system. The companies also have data for lung and kidney cancer. Roche’s study showed some effect in colorectal and head and neck cancer as well.

Bristol-Myers’s stock rose 5 percent on Wednesday, even though the results of the study were not released until 6 p.m., after the close of regular trading.

Mark Schoenebaum, the pharmaceutical analyst at ISI Group, said investors were hoping the combination of the two Bristol drugs would significantly shrink tumors in at least 50 percent of patients.

He said in a note on Wednesday that the overall shrinkage rate was perhaps a bit below expectations but added that for many patients, the shrinkage was more than 80 percent.

“The point is that the depth of those responses is pretty incredible,” he wrote.

Some experts say that tumor shrinkage, a measure that evaluates conventional chemotherapy drugs that poison cancer cells, may understate the effect of these new drugs.

“Sometimes it takes awhile for the immune system to be revved up,” said Dr. Gary Gilliland, who leads cancer drug development at Merck.

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Anonymous's picture
Replies 9
Last reply 5/21/2013 - 11:04pm

I have had two tiny lung nodules since January ( 2 mm and 3 mm). In march I had a CT scan on lung. Both nodules grew about 1 mm. I had a MRI of brain in April which was clear and a CT on lower body which was clear. Last week I had a CT on lungs again to qualify for IPPI/anti-pd1 trial. I found out I have 7 more tiny nodules in both lungs plus the two nodules have grown about 2 mm. None of the nodules are 1 cm to qualify for study. The biggest is 8x8 mm. Plus I just last week got a 2 inch blister on my upper thigh where I deal with lymphedema. There are doing a biopsy this week. What are my options? Should I wait to get in study or start IPPI right away? Is it possible to do targeted radiation and then immunotherapy ? Can they do surgery on that many lung nodules? I already had one lung nodule removed by surgery before January . I am desperate for advice!!!

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casagrayson's picture
Replies 3
Last reply 5/21/2013 - 5:23am
Replies by: aldakota22, POW, BrianP

I am rather new here, and don't know many people well.  I do, however, follow PeterO's blog @   Sadly, today's post shared news of Peter's passing early this morning.  



Saturday, May 18, 2013

The life that is truly life
We write with grateful but heavy hearts to share the news of Peter's passing this morning, May 18th, at 7:30 a.m. The loss we feel is profound, and yet we rejoice in faith that he is even now entering into the light of God's presence. He went in peace, surrounded by our prayers.
For those of you who are in the area and would like to come, a memorial service in honor of Peter's life will be held next Friday, May 24 at 2:30pm at Calvin Presbyterian Church in Corvallis. The reception following the service will be held at our home.
These past few weeks have been intense and sad, as we've cared for Peter in his steady decline. For those of you who are counting, Peter's death comes just a few days short of the 2-4 month prognosis his doctors gave us in March. If Peter were here to write this post, he'd certainly have plenty of conjectures about how and why his cancer went the way it did towards the end and what it all means medically. The truth is that we will never know - we simply rest in thanksgiving for Christ's presence with us, the Great Physician who knows the inner workings of our bodies and ordains the days of our life, and the moment of our death. Cancer did not have the final word in Peter's story. His journey has only begun now that he has passed into the "life that is truly life" (1 Tim. 6:19), where we trust he will live with God forever in his resurrected body.
We want to thank you all for your prayers, kind thoughts, phone calls, blog comments, messages, and words of encouragement during this time - our whole family has felt your care so deeply and truly sense our unity in Christ's love. We're especially thankful for the season of Pentecost that is now upon us, and trust that the Holy Spirit will come to our hearts to illuminate and console, as Jesus promised. We do not mourn as those who have no hope.

Strength and Courage,


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Strength and Courage,


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Gene_S's picture
Replies 1
Last reply 5/19/2013 - 1:57am
Replies by: Anonymous
Join Us!  The NaturalNews Healing Summit will be available
(online) at no cost - starting Mon. May. 20th - details below:

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

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bikerwifee's picture
Replies 7
Last reply 5/21/2013 - 9:50pm

Been a while since I posted. I do check on the board each day. Lynn finished the aberaxene wasnt much help. Talked about a clinical trial in Charlotte if brain was stable but the did a mri of brain. The 32 spots they treated are desd are dying only empty cavitys but of course there was 7 new ones and they offered gamma knife ahain they say it works so good for Lynn just dont know if hes up to the sixth one or not. They are talking about temador not to sure about that either. I dont think we have many options left. Lynn been really sick this week guess he picked up a virus at hospital Monday and on top of it the place they cut off on back got
infected. Its devasting the Drs havent give us much hope and Lynn wants to fight so bad

I have missed talking to my family on her and I have been wonder about gabsound.

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Been a while since I posted. I do check on the board each day. Lynn finished the aberaxene wasnt much help. Talked about a clinical trial in Charlotte if brain was stable but the did a mri of brain. The 32 spots they treated are desd are dying only empty cavitys but of course there was 7 new ones and they offered gamma knife ahain they say it works so good for Lynn just dont know if hes up to the sixth one or not. They are talking about temador not to sure about that either. I dont think we have many options left. Lynn been really sick this week guess he picked up a virus at hospital Monday and on top of it the place they cut off on back got
infected. Its devasting the Drs havent give us much hope and Lynn wants to fight so bad

I have missed talking to my family on her and I have been wonder about gabsound.

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So I posed a question on another post about Melanoma shopwing up in a different set of nodes other than the SLN 

It is about 9 months since diagnosis and surgery.

I could absolutely swear the "contours" of my right arm pit are different than the left.

I don't see my oncologist for about 5 weeks.

I see my neurologist in 2 weeks for a botox treatment for headaches and facial spasms. (Melanoma was on right cheek at base of ear.) 

Neg SLN Biopsy

over 1mm

mitotic 5/mm2

vertical growth 

clarks IV+

so anyway can you actually feel if the shape of your armpit is different is that nodes...i see people getting up in there and I just dont' know what to feel for lol

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lrkg1234's picture
Replies 10
Last reply 5/19/2013 - 11:24am
Replies by: lrkg1234, kylez, aldakota22, Anonymous, MattF

We had a pretty crazy week at MD Anderson and not very good luck with our MRI, varying reports etc.  We still don't totally understand it and have had 3 opinions.  Please read below and let me know what you think. 

First doctor Patel calls us and says there are several areas on the brain that look like tumors, not sure how many, maybe some are scar tissue. She says that the radiologist says there was no contrast, but there clearly was and that she had other doctors agree that saw contrast.  She begins to tell us about possible SRS or Whole brain radiation.  I asked if she remembered that Scott has already had both SRS and Whole brain radiation.  She had not remembered that so things would obviously be different now.  She was not sure then if she could possibly be looking at scar tissue from the previous treatment.  NOT comforting, or cool waiting for several more days for an explanation.  The scan was done on Sunday and we didn't have an amended written report until yesterday, after we were back home in Indy.  


Here are the two reports, the preliminary and the amended. 


Technique, MRI of the brain without IV contrast-diffusion, axial T2 and axial flair were included. 

Findings:  There are areas of new T2 FLAIR hyperintensity in the left insula and bilateral left greater than the right anterior temporal lobes concerning for new foci of metastatic disease.  The previous enhancing lesions demonstrated are not well evaluated due to the noncontrast technique.  There is likely numerous enhancing lesions that have increased or that are new, however, cannot be evaluated due to noncontrast technique.  The orbital structures are unremarkable.  There There is no evidence for acute infarction.  The paranasal sinuses are clear.  There is mucosal thickening in the right mastoid air cells.  The left mastoid air cells are clear. 

Impression.  LIkely other foci of metastatic disease, however cannot be seen due to current technicque.  MRI with contrast is recommended. 


OK, then nothing else happens, no new MRI, just a change in report.  Here is the new ammended report. 


It appears that the patient had IV contrast, which was not pushed over to PACS and given that now these images have been pushed over, it is noted theat the patient is status post IV contrast.  Multiple enhancing lsions as dtailed below:  then goes on to list a total of 7 lesions.  Some of these are new when compared with the prior. 

So, my question is what is reality? 

We got the disc yesterday in the mail and gave it to the radiation oncologist office here.  He calls my husband last night and says that it might not be so bad as 7 tumors, it might just be 2 and then treatment would be possible.  He is home with a busted knee until for a week and a half and says that we can deal with it then, or see someone else.  He does not believe it will make a difference in Scott's treatment to wait a week or so. 

This is just craziness. I think they clearly screwed up the MRI at MD Anderson.  Bad news is hard enough to take, but it would be nice not to be told a few different things.  What does everyone think of these reports?  What does it exactly mean to "push" these images over? 

Thanks for the help.  Lisa

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SDJanku's picture
Replies 4
Last reply 5/18/2013 - 11:50pm
Replies by: Janner, malika, SDJanku

Our 3 year old boy, Gideon, had what we thought was a wart show up in November of last year, it was in the very center of his cheek. We thought it was a pimple, but it kept growing and was soon about 4 mm wide and tall and raised. We took him to the pediatrician, who tried to burn it off like a wart. Instead of turning black and falling off, it turned bright red, bled a lot and grew fast - it was 7 mm wide and 7 mm tall and 3mm above the skin when they sent us to the dermatologist. Derm did shave biopsy and those are the meausrements of what they removed three weeks ago. They sent it to pathology. It has grown to be the same size before shaving it in just three weeks and we see growth daily!

Pathology came back as unclear between atypical spitz nevi and malignant melanoma. I understand it is difficult to tell. They sent it back for further testing.

In the meantime, we were referred to an ENT to do a WLE (Wide Local Excision). We are being told the cut will be about three inches long (on his face) and will leave a good scar - it will go fairly deep too, since they predict that the mole goes deep.

The doctors we are seeing are not specialist with melanoma, and I understand juvenile melanoma is really rare. We live near Portland, OR and about three hours from Seattle, WA. We have family in Michigan and Minnesota and are willing to travel wherever to find the best treatment. Does anyone have any recommendations?

Also, what questions should I be asking the docs? Should they be doing a sentinal node biopsy? What else should I be asking?

There isn't much out there for kids - so any help is really appreciated!

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