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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awillett1991's picture
Replies 5
Last reply 11/2/2012 - 10:02am

Just finished 2nd dose of Ipi and diagnosed today with 2 brain mets - 4 mm and 6 mm. Bummer since only been off Zel 4 wks and was told brain was all clear. Anyone have experience with doing radiation in between Ipi treatments? I think there were some trials based on some effects they had seen at Sloan where radiation seemed to have turbo charged Yervoy and it then attacked the melanoma all over the body like crazy. Looking at SRS to zap these 2 critters as soon as possible.


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rrrule32's picture
Replies 4
Last reply 10/31/2012 - 9:03am
Replies by: rrrule32, Theresa123, deardad, Anonymous

When the Melanoma tumors create a resistance to Zelboraf, do they become more aggressive than they were before taking Zelboraf?  Do the tumors grow faster once the Zelboraf stops working?

Thank you for your input,


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Colleen66's picture
Replies 13
Last reply 11/3/2012 - 5:22pm

Hi all.  Basically, I had a growth that started last winter.  In June I wanted it removed for cosmetic purposes.  Turned out it was melanoma.   I've had the wide excision surgery and sentinel node removal.  The cancer in my leg is now clear but the node had cancer.  It is stage 3a.  Now comes the choices of treatment.  

1.  Do nothing.

2. Do the lymph node removal in the left groin.

3. Do the interferon treatment. 

4. Combination of 2 and 3.

5. Go into a trial. 20% chance for the surgery, 80% chance in the no surgery group.  The no surgery group gets ultrasounds.  Both groups may choose the interferon treatment if they choose.  

I am uncomfortable knowing that the cancer is still in me.  My family all have their own opinions but I am really scared and having difficulty weighing the risks vs. Reward.

I am 47 of Irish ancestry.  Fair skin, freckles, blue eyes.  The Doc told me I am now high risk for recurrence.  My oncologist is also the head of this trial.  She is of the opinion that I should do the trial, bias?  I don't know.  My immune system is already compromised as I have hypothyroidism,  celiac disease and sjogrens.  I am also bi-polar, severe depression, anxiety disorder and a few more acronyms.   My psych issues have been stable except for the anxiety, for obvious reasons.  

Do you guys have any insight for me? Anything at all will be helpful.



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Laurie from maine's picture
Replies 7
Last reply 10/29/2012 - 9:11am

I have a question for people who have had radiation vs craniotomys and how they did

I am having a cranitomy tomorrow.  I had a tumor SRS in june and unfortunately the area has kept slowly swelling to the point that we need to take that out.

Meanwhile they found another 1cm met on the other side.  I was told that the surgeon would rather I try radiating second  tumor because that one is by my temple and trickier.  I am just wondering if people would suggest to just do a craniotomy on the second one (once i have recovered from first) or do SRS again and hope that I dont have to deal with time frame of swelling again


The reason I ask is I have been off any treatment since april when I finished Ippi. I feel my time is runing out to hope the ippi is keeping my tumors under control that long.  I have bad pain in side and tumrs in lung, liver, adrenal and in arms and legs all being kept fairly stable for now but you can understand why i want to get brain hopefully clear so we can start a new treatment.

I did BRAF but it only worked for 3 months with me.  My doctor is hopeful that we can clear brain asap and get me into pd-1 trial.


so question is would you do craniotomy on second (risking possibility of right hand being effected by surgery) or do radiation and hope that it worked on this tumor?


I realize that a lot depends on how well i recover from tomorrows surgery, but they say it should be easy


thank you for your help - you are all in my prayers

laurie from maine




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Caretaker's picture
Replies 18
Last reply 11/1/2012 - 4:58pm


Been reading for a while; this is my first post. I'm caretaker for the most wonderful man in the world, diagnosed stage IV & metastisized all over his body at the end of June, including a tumor on each of his frontal lobes. He had a heart attack 3 weeks later, which postponed the start of Z until the end of July, app. 3 months at this point.

At first, Z was working like gang busters, and 2-month MRI, cat scan, and pet scan showed progress. His energy level was up,and he even gained a couple of pounds.

A couple of weeks ago his energy level began dropping slowly. Within the past week, he began behaving/thinking/not remembering as one who has Alzheimer's. His oncologist put him in the hospital Friday (when she came back from her vacation). His heart meds need recalibrating as his bp and pulse were too low, and another brain mri was taken. Today we found out he has "multiple new lesions" on the brain. We don't know how many, and this oncologist doesn't do hospital visits. (I know. I wish we'd known that when we started but we're pretty new in town.) He's losing weight again (app. 45 pounds total so far), no energy, and gets emotionally upset easily and constantly.

I'd like to know if any of you have had Z work for 3 months and then quit?

If this was you, would you try a different chemo? Would you try an alternative and, if so, which - Gerson's, baking soda and maple syrup, high dose Vitamin C, other??

And also, if this happened to you and Z kicked back in, please let me know that, too!

Thank you for reading, all, and please keep sharing your wonderful stories!



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Lauras News's picture
Replies 11
Last reply 10/29/2012 - 5:17am
Replies by: Anonymous, Janner, Lauras News

I have two doctors with differing referals for my next procedure. The md who performed the removal referred me to dermatology surgeon. She specializes metobolic balancing/anti aging/hormone balancing/vitamin deficency. My family practice md of 20 years strongly suggests oncology surgeon. Both doctors recommend Seattle Cancer Care Alliance after final dignostic procedures.

I can have wide excision w dermotogist Nov 1. I have not seen this dr previously. I should hear from the Oncologist in the next couple days. From some reading on this site, it sounds like i may need to have first lymph noid tested before wide local excision. Does a dermatologist do this procedure? I also have other moles/sites that need to be looked at/tested that have not been looked at by a dr.  Will an oncologist do this?

Any anwers/advice/suggestions. Feeling overwhelmed with decision and some pressure to hurry to have the rest of the bad cells removed.

Lab report:

Malignant melanoma in situ with  associated atypical compound nevus. 

Immunohistochemistry reveals a maturation pattern and low  proliferation rate compatible with a melanocytic nevus in the dermal compound of the lesion. The lesion extends to the peripheral margins of the specimen. Complete removal is recommended. 

Received specimen is 1.4 x 0.8 x 0.3 cm portion of skin. 

Sections show skin with a poorly-circumscribed and asymmetrical proliferation of cytologically atypical melanocytes in the epidermis and in the dermis. Inreaepidermal atypical melanocytes are present in superficial epidermal layers in several area. The dermal componant of the lesion appears biphenotypic having either a small nevoid or larger epithelioid cell appearance. The lesion extends to the peripheral margins of the specimen.

HMB-45 strongly labels junctional melanocytes highlighting the cells present in superficial epidermal layers. Labeling decresaes with progressive decent in the dermal component. MIB-1 Labels the nuclei of some keratinocytes, but very few of the melanocytes in the dermal component of lesion are labeled. This represents a maturation pattern and low proliferation rate compatible with a nevus in the dermal compoent of the lesion.

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alabama girl's picture
Replies 5
Last reply 10/26/2012 - 8:56pm

I went for my CT scan yesterday and they found nothing. I was diagnosed last year with stage IIIB. It was 9mm deep and micromets in 2 lymph nodes which i had only radiation on the nodes and did not remove all. Anyway, I am thrilled to make it to the 1 year mark. Melanoma is such a scary thing to do with. Now if in March of next year, I can say i am 1 yr NED with the breast cancer also, that would be great!!

I read all of the posts and my heart goes out to all of those who are not getting good reports and dealing with this monster. You are all in my thoughts and prayers!

Keep fighting and hanging in there, all your warriors!!

. Don't tell God how Big your storm is, Tell the storm how BIg your GOD is!

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Now if we could just get this growth AFTER lymphatic system surgery could it reduce edema?


The paper

Y.R. Cha et al., “Chemokine signaling directs trunk lymphatic network formation along the preexisting blood vasculature,” Dev Cell, 22:824-36, 2012.

The finding

The lymphatic system, a constellation of vessels, capillaries, and nodes throughout the body, has always been difficult to study. Brant Weinstein, of the Eunice Kennedy Shriver National Institute of Child Health and Human Development, and colleagues discovered chemokine markers that guide lymphatic vessel growth during development. It’s a “major contribution to our understanding of the development of the lymphatic vasculature,” says Marc Achen of Peter MacCallum Cancer Centre in Australia, who was not involved in the study.

The technique

Weinstein’s group used transgenic embryonic zebrafish to track the formation of fluorescently labeled lymphatic vessels. The researchers mounted fish embryos in methyl cellulose, submerged them in flowing water, and imaged them with time-lapse confocal or two-photon microscopy.

The vessel tracks

The group looked at gene expression patterns for factors that might act as guidance cues. They tested the tissues surrounding the developing lymphatic network as the vessels migrated to new locations or sprouted new branches. One set of chemokine genes was expressed just before vessels arrived, then turned off. When the group knocked down the genes for those chemokines and their receptors, “we got lymphatic formation defects,” said Weinstein, whereas overexpression caused lymph vessels to form where none normally would.

The application

Researchers recently discovered that tumors stimulate the growth of new lymphatic vessels, which could be a major highway for the metastatic spread of cancer cells. As a result, there’s a great deal of interest in what signals lymph vessels to form, and these chemokines may be part of it, says Weinstein.

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

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JerryfromFauq's picture
Replies 2
Last reply 10/26/2012 - 10:22pm
Replies by: POW, JerryfromFauq

By Paula Spencer Scott, senior editor
Last updated: October 23, 2012

Has your loved one with Alzheimer's disease, Parkinson's, chronic lung disease, or certain other chronic conditions and disabilities lost out on Medicare coverage of therapy services because likelihood of medical or functional improvement couldn't be shown? A proposed major rules change should make qualifying for help much easier.

What has happened:

Following a national class action lawsuit, the government has agreed to a settlement plan that would allow Medicare patients to continue receiving such rehabilitative services as physical therapy, occupational therapy, and some skilled care either at home or in a nursing home.

As Gill Deford, the lead lawyer with the Center for Medicare Advocacy, explained to The Washington Post:

“If you have a chronic condition, by definition you are not improving. Our view is that Medicare regulations were intended to allow people to maintain their health status. They don’t have to show they are getting any better. The point is to allow them not to get any worse, if possible.”

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

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Replies by: JerryfromFauq
Bayer’s Stivarga® (regorafenib) Tablets Approved by U.S. FDA for Treatment of Metastatic Colorectal Cancer

Wayne, NJ, and South San Francisco, CA, September 27, 2012 /PRNewswire/ — Bayer HealthCare and Onyx Pharmaceuticals, Inc. (NASDAQ: ONXX) announced today that the U.S. Food and Drug Administration (FDA) approved Bayer’s Stivarga® (regorafenib) tablets for the treatment of patients with metastatic colorectal cancer (mCRC) who have been previously treated with currently available therapies (including fluoropyrimidine–, oxaliplatin– and irinotecan–based chemotherapy, an anti-VEGF therapy, and, if KRAS wild type, an anti-EGFR therapy).1 The approval of Stivarga is based on results from the pivotal Phase III study (CORRECT) that demonstrated improvement in overall survival (OS) and progression-free survival (PFS) compared to placebo in patients with mCRC whose disease had progressed after approved standard therapies.2, 3

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

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aldakota22's picture
Replies 12
Last reply 10/29/2012 - 7:23pm

Had my 2 month checkup with Dr. Anna Pavalick at NYU Clinical Cancer Center.Very Happy news.As for scans that were done Aug.22 the conclusion is that "Z" is doing its job.There is only a trace of the disease.About 1% detected.Next visit is not till Dec.19.with scans not till late Feb.2013.I have been on full doseage of "Z" 13 1/2   months.I now can go forward wiyh wellness physical checking my choletersol.prostate exam and colonostophy.When originally diagnosed with stage 4 in late Feb.2011 primary doc did not even worry about any other  health issues.Now Dr.Pavalick insist on the phyiscal.We can beat this beast.Too those others who are fighting this disease and offer support it iis the greatest feeling knowing that i am not fighting this alone.Love the support from the cheer leaders who offer words of kindness .support and prayers,Thank God for all the loving family and freinds I have to fall back on in this time of need.  Al

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KMT2003's picture
Replies 6
Last reply 11/8/2012 - 9:34pm

August 23rd I went for scans and found that I had new areas of concern in my bones in the lumbar area of my back. We started doing many biopsies which kept coming back inconclusive for melanoma. In the meantime, I noticed a lump in my breast that concerned me as well. I had a set back with getting that tested at first too but it did finally come back as melanoma in October... We were discussing Z or trials combining Z with other drugs and doing scans when things kept getting worse for me. I had been dealing with back pain for several months and not being able to do normal things like getting dressed, walking without pain etc. October 16th I was admitted to the hospital after doing on ultrasound for a very swollen and painful leg. I had a blood clot... My doctor was also a little concerned that I could have had a clot in my lungs too because I couldn't talk in complete sentences. However, we did not find any after doing tests so that was great news. I had just gotten my first shipment of Z in the mail that day so we took it to Tampa with us. Our goal for me to be discharged was to get the pain under control from the tumors and my calcium levels in my blood were too high... I was there for about 5 days. My doctor and I decided it was best to skip the trials and start the Z right away. I have been taking it now for about 8 days and am feeling much better than I have in the past few months... No side effects yet but I am wondering when and if they will start??? I am having to still rest my leg due the the clot. I am taking fragmin injections every night before bed plus a variety of other pills along with daily blood work to keep an eye on my calcium levels. I am just glad that am starting to feel better after a long frustrating few months. I hope to be on the road to recovery and share my success with anyone else fighting this nasty beast. Stay positive and aggressive with the doctors! If my husband wasn't as aggressive these last few months I feel we would still be dealing with speed bumps instead of treating this...


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Jls377's picture
Replies 3
Last reply 11/19/2012 - 11:26pm
Replies by: Jls377, Mandi0280, Valentine

I am looking for any bit of guidance and am so grateful for any responses. My cousin was diagnosed with stage 3C Nodular Melanoma a month ago. He went to his primary to have an infected mole on his neck looked at as was misdiagnosed for about a month and a half before the primary burned off the area and had it biopsied. A lot of time was wasted. He had surgery on his neck to remove the tumor and verify that lymphnodes in the area had been impacted. He then had a second neck surgery to remove a second tumor that appeared after the first surgery. The surgeon said that he wanted to hold off on doing a neck dissection because he may need to go back in with several more surgeries to removed new tumors as they sprout up. They are suggesting a series of radiation for several months. Overall the doctors have been less that optimistic and seem to be taking the attitude that it is so aggressive that they need to treat as it evolves. This includes radiation and then regular ultrasounds/pet scans to catch any new tumors and then they would do additional surgeries. I am really looking to hear feedback on any successful treatments people have experienced. Also what ones to steer clear of. There is also a thermotheapy that has come up as an option. The doctors have told him that he is too far along in the staging to do many of the cancer trials or chemo. Any feedback would be so helpful! Positive stories would be uplifting!. I am open to hearing about any and all treatment options including more holistic approaches. Thank you for taking the time to hear our story.

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Richard_K's picture
Replies 10
Last reply 11/6/2012 - 2:22pm


The good news - Yesterday I got the results from my last scans.  Everything is stable, no change, and I’m thrilled to have completed 32 months on Zelboraf.

The not so good news - For the second time in a row, my bilirubin is high and I am on another one week holiday.  Assuming the bilirubin returns to normal with a retest next week I will restart Zelboraf but probably at 720mg twice per day.

I’m looking forward to breaking that 3 year mark and I hope bilirubin cooperates.


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Tina D's picture
Replies 9
Last reply 10/26/2012 - 9:46pm

I have been back on Zelboraf for a few weeks now and my eyes have been somewhat bloodshot for the past few days and my vision is not as clear as usual. I intend to see an eye Dr if it doesnt clear up, but was wondering if anyone else has experienced this? I can still see to read, and such, but it is slightly blurry and my eyes are burning a little. None of it is terrible... but it is noticable.



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