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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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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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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molly's picture
Replies 7
Last reply 11/18/2010 - 11:36pm
Replies by: JuleFL, ValinMtl, Sharyn, Tim--MRF, lhaley, King, Anonymous

Sherron ask that I post for her and let you know that Jim was admitted to the VA Hospital yesterday and received blood transfusions. Jim is very weak and Sherron is not sure when he will be allowed to go home. She is waiting for the doctor to make his rounds this morning. The doctors told Jim he will need transfusions every 2-3 weeks. Sherron ask that you please keep them in your prayers.  

Thank you for your care, concern, and support.


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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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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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MaryMary73's picture
Replies 17
Last reply 12/23/2010 - 2:22pm

I live in Canada (Toronto to be exact) so our health care system is quite different from the US. The actual medical care in Canada is basically the same as in the US but we are not charged for any medical procedures or surgeries (including staying in the hospital for any length of time, medications received during the hospital stay, etc etc) that we have done (unless it is cosmetic). We do pay for our own medications but for those of us who have insurance coverage through our employers, we are usually covered from 80% to 100%.

In the US, I know it is very different. What happens if someone suspects he or she has melanoma and they do not have insurance coverage? How much would it cost for a visit to a family doctor? A dermatologist? A biopsy to see if a suspicious looking mole is melanoma? Surgery to remove healthy skin around the melanoma (once diagnosed) in order to attain clear margins?


The only real wisdom is knowing you know nothing -Socrates

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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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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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Springbok's picture
Replies 3
Last reply 11/16/2010 - 12:19pm
Replies by: Lori C, dian in spokane, Anonymous

I went to a talk here in Calgary, a few weeks ago, in which the Gerson approach to health and curing cancer was promoted. SInce then , I have found a number of other clinics in Europe, Mexico and North America (eg. the Hippocrates Health Institute in Florida) which practice similar "treatments" - usually lots of natural juice, strict diets, and enemas aimed at purging the body of toxins and cancer cells (or starving the cancer cells).

The Gerson Institute, in particular,  makes some specific claims about improving the prognosis of those with Melanoma. However, there are a number of rebuttals of their claims on the Internet from the established medical profession , including teh American Cancer Society.  These note that none of the Gerson claims have been proven by peer reveiw or experiment.

No doubt these clinics charge an arm and a leg for treatment, with questionable results (though a fresh juice diet can't hurt).

I wonder if the board members have any personal experience with these clinics, because drinking a glass of fresh juice every hour sure sounds  preferable to  engaging in "chemical warfare" and surgery that the cancer hospitals of the world promote?



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davekarrie's picture
Replies 1
Last reply 11/20/2010 - 11:00pm
Replies by: kellie1979

After reading my path report a bit more, the initial stage is set at Ib, T2a with no info yet on N or M.  Therefore, there is a good chance that the melanoma did not spread, right?   I go to mayo clinic next week for consult on 24th and surgery on 26th.  I do have a few more suspicous moles they will need to look at though, but the more I read about stage I the better I feel.  My path report does mention occasional mitosis, so not sure what that means. I am also at Breslow depth 1.5mm and clarks 4. thanks.

Live life to the fullest and enjoy each day! #noonefightsalone

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Suzan AB's picture
Replies 3
Last reply 11/16/2010 - 8:12am
Replies by: Suzan AB, Dynasysman, Fen

Waiting sure does suck the big one.  I believe it is one of the major stressors for me, the not knowing...Here's the deal.  Waiting for confirmation that the nodes or I should say tumors in my right lung have doubled in size and  had uptake are melanoma (please tell me it was a mistake).  Seeing Dr. Daud next tuesday for options.  I was hoping to hear from someone yesterday, but alas the PET scan disc was sitting on someone's desk.  UGH!  I was hoping to get whatever out before Dec. 1 when my deductible goes up to the astronomical amount of $10,000.00.  yes, you read that right. 

Going though loads of emotions at the moment...

Suzan AB

Stage IV

Presently...One Day At A Time.

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rj's picture
Replies 7
Last reply 11/21/2010 - 3:18am
Replies by: rj, djpayn, lhaley, Jim in Denver, TAC, Janner, Anonymous

Ron has had a 3 mm spot on his lung ever since the original scan in March of 2009.  We were told at the beginning (not by our melanoma specialists) that it was NOT melanoma.  At his follow up appt with the surgeon last week, one of the doctors said it COULD be; hence the watching.  My question is this----wouldn’t it show uptake on the scans if it were melanoma, and can melanoma just sit without growing for a long time?  If anyone has had similar circumstances, I’d appreciate information.  Thanks--Betsy 

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CaptAaron's picture
Replies 22
Last reply 11/19/2010 - 12:11pm

Good evening fellow warriors.  Just wanted to introduce myself to the board and see if anyone can shed some light on a treatment option I'm facing.  I'm a 31 year old father of 2 boys.  I'm active duty Air Force stationed at NASA's Johnson Space Center in Houston, TX and I'm a marathon runner.  I was diagnosed in July of this year (2010) with a 1.15mm spot on my upper left back.  A WLE and SNB later revealed clear margins and one of three lymph nodes removed showing a microscopic level of melanoma present (<10cells in a 1cm diameter sample according to the pathology report).  I then went on to get additional surgery at MD Anderson.  The surgeon removed 22 additional lymph nodes on my left side and all were clear.  CT/PET/MRI's all clear of any metastatic disease.  Since my diagnosis I've made incredible lifestyle changes to include going vegetarian except for fish occasionally, cut out all carbonated beverages, caffeine, alcohol, diary and most anything that isn't organic.


My medical oncologist recommended two potential paths for treatment.  One was a pegylated (sp) Interferon trail which was dependent on whether I had a specific genetic tissue type.  Blood tests revealed that I did not, and therefore the other treatment recommended was the standard Interferon regimin of 4 weeks HD and 11 months self injections.  I completed the 4 weeks of IV treatment not last Friday, but the Friday before.  I mus say that it was quite miserable most of the time and the depression effects hit me hard.  I've been trying to work as much as possible, but I'm also getting the "chemo brain" effects and dealing with that at NASA is not the best thing to have happen either.  Headaches, depression, fatigue, bad tasting food are all very real side effects for me, and I'm not liking the idea of continuing this for 11 months.  My oncologist is definitely leaving the option up to me, and doing a good job of explaining the minimal benefits of Interferon to me, stressing that it is a patient choice.


So my question is kind of an obvious one...what do you all think would best in this situation?  I'm all for fighting cancer and fighting hard, but the costs have to at least equal the benefits, and it doesn't seem like there's strong evidence out there to help that case.  As I sit here and type this even my head is throbbing and I feel like melting into my chair from exhaustion.  I like the idea of counting on the 4 weeks of IV treatment to be "good enough" and the 11 months of additional treatment to be the "enemy of good enough"...but is that the case?  I know it's a dilema that's been debated on this forum before, but I thought I'd re-introduce it, along with myself.  Thank you for your inputs and your time fellow warriors.--Aaron

2010 Stage IIIC - Lymph node dissection; Interferon 2011 Stage IV lung mets; Yervoy 3/4 only; surgery & BRAF next Through faith & prayer we will be provided with peace & healing.

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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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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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