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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lhaley's picture
Replies 17
Last reply 11/18/2010 - 5:27pm

We always tell people that just because you have a new symptom it doesn't mean it's melanoma. Then it happens to you and automatically mel is the first thing I thought about.  I've been having headaches, lightheadedness, memory issues ect.  I did have a traumatic brain injury about 6 months ago but it had gotten better, then went back to issues again.  But, the MRI I had yesterday was clear!! 

I didn't realize how hard it was to admit to the oncologist that I was having problems. Denial was easier to deal with!

By the way, don't ever put a paper shredder on a top shelf. The motors do fall off when reaching to get it down!!  Even though I still don't feel great I am greatly relieved!


Stage IV  NED 1 month  PET scan Dec. 7th

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ValinMtl's picture
Replies 6
Last reply 11/18/2010 - 12:46pm

Well, I did a beautiful wipeout in front of the hospital, tripping on my shawl...hitting my chest on a jutting out cement pillar, then landing on the knee, of course the monster leg with lymphedema. I certainly had loads of attentive people around me, embarrassing plus! As I was falling all I could think of was please don't cause any delays in treatment but I was able to make it to the oncology ward in a wheelchair!. So I sit here very sore today.

Had my 4th treatment yesterday.  The good news, doctor is seeing a noticeable difference in the tumors, some are actually drying up and the purplish motling on the leg is diminishing, now I have to wait for a scan.  I almost didn't get the treatment as my platelets are very low but since it was my 4th treatment and not 3rd the doctor decided to go ahead with it (he warned me no falls, no aspirins)...will now have to visit CLSC about a mile from my house for blood tests each week until platelets improve (beats travelling to the hospital which is about a 1 1/2-hour drive).

Now my question for the ipi warriiors: I have now had 4 treatments,and a scan in 2 weeks and another scan 12 weeks after that, at that point they decide whether there is a need to continue, or not (wouldn't that be nice) OR of course, if it doesn't work then on to another treatment.  There is a 3-month wait between ipi rounds, is this the norm?

So, just to update those planning on ipilimumab..cutaneous tumors have certainly stopped spreading on my leg (I had 100s after waiting about 5 months for trial to come to Montreal), most are not raised but rather 'flat' now, and some are dried up (yehh!). Praying I get good results with my scans. I really haven't had any significant side effects, a few slight headaches in the beginning, a touch of fatique and inappropriate gas.



Live Laugh Love Nothing is worth more than this day!

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dian in spokane's picture
Replies 3
Last reply 11/18/2010 - 9:16am
  UC Berkeley Junior, 20, Dies After Battle With Melanoma
 Jenna Bockmiller

Jenna Bockmiller

By Jeffrey Butterfield
Contributing Writer
Wednesday, November 10, 2010

Described as an avid indie rock lover, an active sorority member and an unfaltering friend, UC Berkeley junior Jenna Bockmiller died after a six-year battle with melanoma on Saturday. She was 20 years old.

Friends said Bockmiller, a sister of the Delta Delta Delta sorority and intended psychology major, pursued her interests, including her devotion to music, despite the significant burden of frequent doctors' appointments and treatments for her illness.

"She had the best taste in music," said Delta Delta Delta President Joyce Chang. "She was the one who introduced me to Coachella. That says a lot."

According to UCLA junior Piper Akol, Bockmiller taught herself to play guitar and piano and would spend time helping with her brother's band as well as attending and working at concerts. She said Bockmiller got to meet the Strokes - one of her favorite bands - through the Make-A-Wish Foundation.

Akol, one of Bockmiller's best friends since middle school, said Bockmiller did not allow her illness to control her life and was able to complete all requirements in time to graduate with her high school class despite the time restraints of being a melanoma patient.

"She was very resilient," Akol said. "She was not dealt a great hand in life. Most people don't have to deal with this ... But she didn't complain. She was honest, enthusiastic, funny, everything a girl could want in a best friend."

Friends said Bockmiller demonstrated her dependability and enthusiasm through her participation in her sorority.

"Even if she was tired and wasn't feeling that well, if she had committed to helping out at an event or something, she was there and she helped," Chang said.

Bockmiller's battle with cancer began when she was diagnosed at age 14, toward the end of eighth grade. Radiation treatments damaged her spinal cord, making walking difficult and running impossible, impacting her love for athletics like track and field. She was in remission for about four years before relapsing her freshman year at UC Berkeley.

"I felt like she was wiser about everything, about life in general, because of her experiences," said UC Berkeley junior Eileen Libove. "Jenna never let petty things upset her."

In 2008, Bockmiller received a Courage Award from the Melanoma Research Foundation. Melanoma survivor Suzanne Lescure, who met Bockmiller through the foundation, said Bockmiller's mother was extremely involved with the foundation and dedicated to helping her daughter overcome the cancer.

On a personal online fundraising page that encourages donations for the Melanoma Research Foundation, Bockmiller wrote earlier this year about how her illness changed how she perceived her life.

"I have an appreciation for life that many other people my age don't," Bockmiller wrote. "I look at every day as a blessing and the things that I do, no matter if it's something I want to do or not, is something I get to do, and am therefore grateful."

Bockmiller's memorial service will be held on Nov. 13 at Moraga Valley Presbyterian Church at 11 a.m.



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2atlascedars's picture
Replies 5
Last reply 11/18/2010 - 8:46am

I am scheduled for a SNB and WLE (with skin graft) on my acral lentiginous melanoma on my heel this coming Friday (diagnosed 10/26), and I am finding it difficult to ensure that I will be covered by my insurance for my upcoming procedures.

Here are the details:
I was referred to a cancer center by my dermatologist (who is in my insurance network...Aetna), but only 1 of the three doctors caring for me at the cancer center is in my insurance network. I called the insurance company and they told me to have my dermatologist file a referral and pre-certification for the other two doctors. I did this, but the dermatologist's office staff told me that they should only have to provide the referral (which they have already done). They said that they are not prescribing the surgery, so they shouldn't be involved with the pre-cert. I also spoke with the Managed Care Representative at my cancer center and she said that if one doctor at the center is in my insurance network, then they all are because they use the same take tax code.

So...I have spoken with 3 different individuals involved in my care and they all said something different.  

Does anyone know the best way to handle this so I don't wind up with massive un-covered medical bills following my treatment and procedures?

Mark from California

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Lauren mom to Jenna's picture
Replies 42
Last reply 11/18/2010 - 12:22am

I am very sad to tell you that Jenna passed away over the weekend at the age of 20. 

She responded beautifully to the BRAF/MEK combo.  We could watch the sub-qs shrink and disappear.  The internal mets were reduced to about half the size by her first CT scan.  She was feeling so much better, but starting to get some headaches.  An MRI was suspicious for leptomeningeal mets, but not conclusive, and an LP came back without any melanoma cells, so we were able to continue on with the trial and double her dose in hopes that we could get enough of the drug into her CNS to control whatever was going on.  With the addition of some new meds to help decrease the intra cranial pressure, it was under control for the most part until last Tues. A new MRI showed both lepto mets and multiple small brain mets.  A multiple location, simultaneous hemorrhage of these small mets took her out of the cancer.  Our neurosurgeon said he had never seen an event like that before.  We can only attribute it to the mercy of God as He continued to have his hand on Jenna through this entire 6 1/2 year process. We experienced a lot of joy, and made the most out of every experience.  I am incredibly blessed to have been able to see her through, and learn from her amazing attitude.  She would joke that she felt like the knight in Monte Python's Holy Grail movie that keeps getting appendages chopped off yet continues to yell at his opponent "come back and fight, this is just a mere flesh wound".  Well, melanoma may have continued to reduce her life, bit by bit, but she did not let it take her spirit, and she lived her life with grace and enthusiasm until the very end.

I know that there has been a lot of discussion on the board about the BRAF and inhibitor drugs and whether or these drugs cause the disease to go to your brain, creating some fear in doing these trials.  It is my understanding that if you get the opportunity to fight melanoma long enough it will probably find it's way to your brain.  In Jenna's case, she had such extensive disease before we could get her an opening in the trial, that it had too much of an opportunity to get there.  These drugs are amazing, they can give you your life back quickly.   Without question, the best available treatment, and we should collectively be fighting to get more trials open and cut through the red tape.  It is hard enough fighting cancer, but fighting "the system" to get a drug that you know can extend your life (living) is just too cruel.

 Thanks to all who post links to research and share their stories and support here.  Your dedication to the board and one another carried us farther down the path than we thought we could ever go.

Fight On!!


Lauren mom to Jenna

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jnaakins's picture
Replies 9
Last reply 11/17/2010 - 9:10pm
Replies by: Janner, Anonymous, jag, jnaakins

I am asking because I recently had a large melanoma in situ removed. I am more than usually concerned because I lost my brother in February to Melanoma. I know the statistics say that the "cure" for melanoma stage 0 is surgical removal, but Im wondering what the odds are of it coming back, with my family history?

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Anonymous's picture
Replies 1
Last reply 11/17/2010 - 8:10pm
Replies by: glewis923

I have been watch for a post by Kevin. I know that his scans after IL2 treatment were disappointing.

I have been away from the board a few weeks so I am praying that Kevin is doing OK.

Would appreciate anyone posting to let us know how Kevin is doing.


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Karen wife of Phil's picture
Replies 5
Last reply 11/17/2010 - 2:18pm

My husband and I have been lurking in this community for quite awhile gleaning much needed information and inspiration. He has actually posted a few times but has had trouble recently with passwords...not very technically savvy I'm afraid. Anyway, we need some input on what is happening with him right now.

In Sept. of 2008 he was diagnosed stage IV with MUP. He had a lemon sized tumor in his right lung which has not changed since then. He has had tumors removed from near his lower spine and several from his intestines. On Nov. 4 he finished his final dose of compassionate trial of Ipi. The next day we ended up back at the cancer center for an emergency CT scan because of pain in his stomach. They found a new intussusception  (folding over of the intestine) which in him usually indicates new tumors. The surgeon who also read the CT saw some things on the other side of the abdomen. As is usual with surgeons he wants to cure with the scalpel. We feel this may be the progression of the tumors before the regression. We are thinking if he can deal with the pain, it might be prudent to take a watch and see attitude. Phil has had so many abdominal surgeries that this is the last thing he wants to do. Has anyone else had a pretty severe progression and then a regression? We really would like some input from anyone who has dealt with this. This board has been such a wealth of info...we so appreciate everyone here!

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Laurie from maine's picture
Replies 7
Last reply 11/17/2010 - 11:41am


I had hoped to go to the melanoma symposium last night but couldnt make it down from Maine.  Did anyone go?  I really like Dr Lawrence and Dr Hodi and would be interested to hear how it went and if any new info was brought up.  I was also hoping to run into people from this site, oh well.


laurie from maine

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killmel's picture
Replies 2
Last reply 11/17/2010 - 11:38am
Replies by: Anonymous, bcl

Hi Linda,


Any update on how Cass is doing. We all responded a few months ago whe she need help. Would appreciate know if our prayers are working for her.

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Melanoma Mom's picture
Replies 29
Last reply 11/17/2010 - 10:18am

My 14 year old very athletic son was recently diagnosed with melanoma. In the Spring I noticed that he would shift around a lot in the car, trying to get comfortable. After finding a bloody discharge in his boxers, I asked my husband to have a "guy to guy" talk with him, thinking it was hemorroids. He told his Dad that he had a "wart" hear his bum and just assumed it would go away. We had our Pediatrician look at it. He agreed it was a wart, but because of its size and location near the anus, he referred us to a Dermatologist. The Dermatologist agreed it was a wart and that he would freeze it over 2-3 visits. The first freezing was in late July and then another two weeks later. When we returned to do the third treatment, the Derm. suggested we do a biopsy to see what virus we were dealing with, as it wasn't shrinking. He assured us he wasn't worried and certainly was not thinking it was cancer. 10 days later he called us from his home and said that he had never in his 25 years of practice been so shocked to get a diagnosis like this on an adolescent and that he had the lab double-check that they hadn't confused slides. He recommended we get follow-up care in Boston as soon as possible (we live in Maine).

We met with Oncologists at Dana-Farber and a surgeon at Children's Hospital soon afterwards. While their Pathologists had not found the biopsy to be definitively melanoma, we all agreed that the "wart" needed to be removed. In the meantime, the biopsy was sent to various specialists around the country as well as Paris. It was also decided that two other spots that popped up in July, one on his inner arm and one on his torso, that originally looked festered would be removed. These had also been frozen by the Derm. so they weren't able to tell the original formation. There was also a strange colored spot on his outer arm that had been there 10+ years that had the Dermatologists at Children's completely stumped. 

The surgery took 4 hours and he was released that day. The surgeon felt things went very well and he got clear margins. We returned the following week to learn that the "wart" had definitely tested as melanoma. The two spots from July were pre-melanoma (can't remember the medical term for that) and the 10+ year old spot was benign. Next up was PET/CT/brain MRI. Those all returned clear of tumors,  thank GOD. 

Two weeks ago a SNB was performed and they took 4 nodes. Again, our son was amazing and left for home the same day. This Thursday, November 18, we will receive word as to whether the cancer has spread to his nodes and what they suggest for treatment.

We continue to be shocked by this terrible turn of events. Our son is so bright (attends a private prep school), plays three seasons of sports and also rides his bike long distances - Maine to Quebec in two weeks this past summer. He feels, acts and looks the same as always. We have no family history of melanoma and believe me, the sun has never shone on his anus! None of our children have ever had a bad sunburn. The physicians all seem very perplexed with this strange case. They have ordered genetic testing for the 23rd.

Please keep my son in your thoughts and prayers. His dream is to attend the United States Naval Academy and become a Navy Seal. 

At this point, we welcome encouragement and stories on "beating the beast". If anyone knows of other young melanoma fighters, we would love to be in touch with them.


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Carrie's picture
Replies 8
Last reply 11/17/2010 - 9:45am

It's been a while since I have posted on here.  Here is a little background on my family...My mom was diagnosed with MM 3 1/2 years ago with four primary melanomas (deepest one had her staged at IIC).  She moved to Stage IIIB after several intransit mets were removed near the site of one of her primaries.  She has been NED for 2 1/2 years and is doing great!  Six months after my mom's originial MM diagnosis, my sister was diagnosed with MM with two primaries.  Fortunately, she is staged at IA.  She has been NED since her diagnosis.  Doctors have suggested there is a good possibility of our family having the familial atypical multiple mole melanoma syndrome.  We have not done genetic testing.

With that being said, I have been closely monitored by my dermatologist twice a year for skin checks.  I have a number of biopsies done with 3-4 moles being mildly to moderately atypical.  I just recently had a mole removed from my upper chest area.  My derm called me today with the results.  That mole was moderately atypical, however, the mole also had some characteristics that melanomas tend to have.  She started telling me what those characteristics were, but she immediately lost me on that.  On Monday, I'm going to get her to fax me a copy of the path report.  The following week, I'm going for a re-excision. 

I was wondering, is this normal?  She said none of my other moles that were atypical had these characteristics.  Should I request to have another pathologist look at the biopsy?  I have always thought that an atypical mole was atypical and melanoma was melanoma.  She has really confused me!  Any advice would be appreciated!



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bcl's picture
Replies 5
Last reply 11/17/2010 - 2:00am
Replies by: bcl, Anonymous, kwahlbin, glewis923, lhaley

And if you are reading this, please also plan to advise us in future (on both boards) when you are changing something as significant as the site URL  - I  gave the old one out to a stranger and am not sure now if she will ever find the support she needs.

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washoegal's picture
Replies 8
Last reply 11/17/2010 - 12:51am

First the good news!  I am now 8 months NED!  Yahoo!  Quick review:  Diag Jan. 2010  3.1mm tumor RT , March 2010 SNB 2 nodes microscopic amounts of cancer, complete Lymph Node Dissection.  No other treatment.

My original Onc, who was in Santa Monica California, is now at Yale.  I followed up with the Dept head who is a brilliant man and has written tons of paper on melanoma.  However, he is not the doctor for me.  The nurse came in with the good news, the doctor follows up with  " if you survive melanoma" and starts giving statistics about recurrence rates, etc.  Boy, how to ruin a happy day! make a long story short, I don't think this is the guy for me.  If I need someone fighting for me, I'd like someone a little more positive.  Would like some recommendations:  San Francisco, Santa Monica, UCLA area, all OK.  Unfortunately, Nevada has no Melanoma specialists.



Stage 3

Life is too short to be anything but happy. Falling down is a part of life, getting back up is living.

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Charlie S's picture
Replies 6
Last reply 11/16/2010 - 8:42pm

Some time ago, when this was MPIP, an upstart Don W started a website that to this day isstill maintained by him  hosted by Coleen, a melanoma survivor that runs an internet hosting company where people submitted photos of people and events relative to melanoma who chatted here and met one another.

It's worth a look to understand the history and community that existed because it matches names with faces.


Charlie S

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