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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I am a family nurse practitioner who's good friend lost his mother to melanoma.  He was nine years old and his mom was in her early thirties.  Despite this family history and my friend's objections, his two daughters (both in their 20's) regularly tanned both on the beach and in tanning booths.   Their parents dragged them in to a dermatologist during their late teen years, who neither discussed their family history, suntanned skin, nor UV radiation exposure; and who told them to come back for another skin check in 5 years.  Needless to say, my friend and his wife were filled with dismay.  

I am also a board member of the National Academy of Dermatology Nurse Practitioners, because it is clear that melanoma is optimally  treated when detected early...and, primary care nurse practtioners and their patients are the people who need to detect melanoma in its earliest stages.  Because 41% of  patients in the U.S.A. lack access to dermatology specialist care, it is imperative that the public and primary care providers know everything possible about melanoma detection and treatment.  

There is no reason that only dermatology specialists should limit information to generalists or the patients and their families.  For this reason I invite everyone who wishes to learn more about current Melanoma treatment options, dermoscopic surveillance for skin cancers, treatments of other skin cancers, and Melanoma research to come to our conference in Clearwater Beach, Florida.  You do not have to be a nurse practitioner or medical provider to attend.  We welcome you to become empowered, check out the program and consider taking an educational trip where you can hear what leaders in the Melanoma treatment world say to other healthcare providers about Melanoma and other skin cancers.  Here is the web address:

I look forward to meeting you at this wonderful conference on the beach in Florida....Sunblock and Sunblocking Clothing required.

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yoopergirl's picture
Replies 9
Last reply 3/26/2012 - 2:27am

I had my eyes checked again yesterday and I still have the Uveitis and am back on the prednisone drops and dilating ones, he said that I should not have the last infusion if they suggest it at the Carbone Cancer center next appointment, I said the Oncoligist never mentioned the side effect with my eyes at our meeting so will have to mention it to him. I have read that only 1% of people get this while on the drug. I am looking for any input on this. If these drops don't help by next Weds then he may have to put some shots in my eyes, something that I just cringe at so hoping and praying that the drops do the job.  

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MaryD's picture
Replies 15
Last reply 3/18/2012 - 9:30pm

I always preface a post like this by saying that I will never take this news for granted and am so humble to be a stage IV survivor and able to share it.   Today I had my six month scan and was fortunate to find out it was clear again.    Eleven years, 5 recurrences, and 5 treatments (INF, vaccine trial, radiation, Ipi, and 6 mos of pulsed IL-2) later, I am now able to celebrate a 3 1/2 year anniversary since my last recurrence.

Having been on this board for almost all of those eleven years, I have seen many losses, victories, and met some truly amazing people along the way.  I can only hope that this kind of news gives hope to those that need it on this journey.

And now I will get myself a nice glass of wine!   :) :)

Best to all . .


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LynnLuc's picture
Replies 3
Last reply 3/15/2012 - 5:34am
Replies by: aldakota22, MaryD, melmar

My scans are fine, blood work fine...had my is the skinny I will share...
Saw Dr Weber and he thinks my rash/hives on my hands and soft parts of my feet of
probably side effects from Anti-PD-1. It has been there since mid December.
He says I am doing fantastic and would hate for me to stop...I told him I
can live with it...but so far my hands and feet have NOT gotten worse since
my infusion today, so I am hoping it is NOT related! my trial it is required to be NED ( no evidence of disease)
which could be by chemotherapy, surgery or immunotherapy or radiation.
Some who enter the trial start right out of surgery and such, so their NED
is somewhat questionable, if you know what I mean. Anyways, 29 people
are/were enrolled. 2 progressed and died of brain mets.
1 progressed and was put on another immunotherapy and is again NED. 1
progressed ( and this is the kicker....he now experienced spontaneous
REGRESSION of his melanoma! 25 remain stable and NED.
This is week 72 of my Anti-PD-1/vaccine trial (MDX 1106)

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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ElaineLinn's picture
Replies 5
Last reply 3/16/2012 - 9:22am

Its been a while since I have been on here to update you all. But it has been a hard few weeks in the hospital. I finally got to go home on Monday. I decided to do a part of a clinical trial called Bendamustine , I had to have 3 IV infusions before the brain surgery , then after the last infusion I had to go directly to surgery.. So far so good very little sideeffectrs But still particially blind because of the tumor, but the dr. seems to think that my sight willl return, but if not I am ok with that as long as I am alive to raise my kids. They put my IPPI on hold untill after the radiation on the brain then I should be back to that. Lets pray that the 2 IPPI will cure my lung mets so I can work on this brain now . Thank you all for your thoughts and prayers. Also I am sorry for all the miss spellings but I cant see to well LOL

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Replies by: aldakota22, deardad

This is quite a good start! A neck lymph node almost gone as well as a small met just under the skin. Can't tell about the tumors deep inside lungs and other places but why should they behave differently?

Part of me has wild hopes that this may work 100%...but part of me prefers to be prepared to a future set-back in order to avoid too much disappointment.  

This Braf stuff seems a bit sci-fi to me - IT IS JUST TOO EASY especially after 3 years of chemos and ipi. CAN'T BE TRUE!

I'd rather take as litle of it as possible (having heard about potential NRAS mutations and dormant cancer cells possibly being activated by the drug).

Doctors say that minimum treatment is 2 months even if everything seems to have gone.

I'd be happy to hear about your experience with duration of Zelboraf intake and effect!



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Kimberly Duncan Watts's picture
Replies 3
Last reply 3/15/2012 - 6:51am

Wow I couldn't believe they were so big. No wonder I had such pain! Thx to all for your responses! I appreciated each of them. Hoping now I really am NED! Appt at Roswell the 21st, will ask about radiation. And I've never been tested for ckit so that's next too! Prayers n positive thoughts to all.

I can do all things through Christ who strengthens me.

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ad2424's picture
Replies 5
Last reply 3/16/2012 - 3:47pm
Replies by: TSchulz, NYKaren, cltml, ad2424

I did a course of IL - 2 in December. This was myu first treatment of any kind. I have lung nodules measuring 7 mm and smaller. I tolerated 8 bags week one and 5 bags week two.

I had a scan 6 weeks after treatment which showed stable disease and a scan 12 weeks after treatment which also showed stable disease.

My question is whether or not to do a second course of treatment or not.

My doctor (Dutcher, St. Lukes Roosevelt in NYC) is recognized as one of the foremost experts in renal cell carcinoma, and also treats patients for melanoma. She has treated over 500 patients with high dose IL - 2. Her opinion is that I am a resoponder, that there is no data to show that doing a second course of treatment has proven benefit, and that I should scan in another 3 months.

I know many doctors recommend a second course as standard protocol. Does anyone know if there is data to show a second course of treatment has benefit? Thanks.

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himynameiskevin's picture
Replies 11
Last reply 3/17/2012 - 7:57pm

Tomorrow I'll be one week into Zelboraf. So far so good I think. No noticeable side effects yet, possibly some fatigue and weakness, but I've been experiencing that quite a bit the last two months as my sleep schedule and normal activity have been out of sorts, and with the other two meds I'm on. I've been avoiding the sun as recommended. I think being on the drug has done a lot for me mentally, doing something proactive has me feeling pretty optimistic and hopeful.. I've been feeling close to my ol' self the majority of this last week. This morning though about 20-30 mins after my dose, right before breakfast, I suddenly felt fatigued and kind of shaky. Having two seizures a month and a half ago, the fear of having another or not knowing this feeling I was experiencing.. paranoia and anxiety arose and I think was making it worse. I stayed calm, breathed deeply and the feeling faded after a few minutes, but it's kind of left me shaken me up today and has made me a bit nervous. I read that there is a rare side effect with Zelboraf that can effect you heart rate or something that can lead to dizziness and fainting. Sounds scary... not helping with this nervousness I was just getting over... But hopefully it wasn't that.. maybe it was nothing.. maybe it was a mini anxiety attack, maybe I didn't drink enough water with the dose, or maybe it was from a lack of a good nights sleep and an empty stomach.. I don't know. :/ Anyway, besides this little thing today, I'm feeling pretty good all things considered. I've got an appointment with my oncologist in a week to schedule scans and what not. Hopefully they'll say something good. And that's it for now. As always, thanks for the support, thoughts, and lending listening ears from time to time. It is all so appreciated. -Kevin  

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Judy D's picture
Replies 5
Last reply 3/20/2012 - 6:20pm

Thought I could go to Hawaii with my daughter especially if I was carefull, WRONG!  I stayed under the umbrella, used high spf sunsreen but still got severely burned or more like sun poisoned.  Severe blistering on my feet, swelling and rash on arms and back. I just want to warn others to be extremely careful so that this wont happen to you.  Vacation to Mexico not going to happen.

Phillipeans 4:13 I, we, you can do all things through Christ who strengthens me.

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yoopergirl's picture
Replies 4
Last reply 3/15/2012 - 4:20pm

First of all I like the doctor, he is much more informed about Melanoma but he did tell me that he doesn't think the Yervoy worked for me since I have 4 new growths on my arm, he is ordering a cat scan and a MRI for the 26th, said a pet scan does not look at the brain. Also said he would have done the same thing as the other oncologist did, put me on high strength prendisone since my stay in the hospital was one of the bad side effects. I chose to stay with this doctor in Madison. He did mention maybe chemo or PD 1 if the yervoy did not work. I did read where sometimes the tumors grow while on this drug but he did not seem to think so, he will be consulting with Dr Albertini on Thursday. I came out of there pretty down in the dumps but I have to pick myself up and fight this cancer with everythin they can give me. 

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bikerwife's picture
Replies 5
Last reply 3/15/2012 - 10:44am

My name is Belva I am the wife of Lynn he is battling melenoma. I am new to this forum. Looking for support in dealing with dreaded disease. I feel alone and helpless. We have had WBRT by a doctor who never had any dealings with melanoma. Have had gamma knife to five lesions on brain. That was a breeze.

We have transferred to musc in charleston south carolina. Our new doctor and his staff are wonder. He is a melenoma specialist and very up to date. Had 3 ippi treatments after. Second noticed new tumor growth. Dr said this happens at times and didn't seem concerned. Iasked about blood work said it was good.

This is scary to watch. Thanks for listening and may God be with each of you. God heals and I'm holding on to this.

What God leads u to he will. Lead you through

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RC17's picture
Replies 1
Last reply 3/13/2012 - 5:14pm
Replies by: Janner

Has anyone been diagnosed with Melanoma years after a shave biopsy? In 2002 I had a shave biopsy on my back it came back Lentiginous Compound Nevus I had no further treatment. Last year my husband was putting sunscreen on my back and noticed a small brown spot was appearing in the middle of my scar. I went to my Dermatologist to have it removed, she said she has never had one come back as Melanoma. We were both shocked when it came back as Malignant Melanoma in SITU.

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Phyllis in IA's picture
Replies 6
Last reply 3/19/2012 - 10:01pm

My son lives in Chicago and has been seeing Dr. Shea at the Univ. of Chicago.  He's been very pleased with the care, but somehow because of the way they bill and the fact that his office is in a hospital, his insurance doesn't cover his appts.  He asked me if I knew of another derm in Chicago that would be highly recommended, and I told him I would ask here.  An added plus would be if it could be someone on the north side (he lives in Logan Square).


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Eileen L's picture
Replies 5
Last reply 3/15/2012 - 4:52pm

Hi to all. I am a Stage IV survivor, over four years since my Stage IV diagnosis. As some of you know, I had an unusually good response to Nexavar and have been on the drug with minimal side effects since initial treatment. I did get tested a few years ago and I am BRAF positive.

I am now faced with an adrenal gland tumor that has been there for three years, not doing much of anything until my last scan showed an almost doubling of size, It is now 5.4cm. Melanoma was confirmed by a fine needle biopsy, got the path report late last week. The plan is to remove that sucker and stay on the Nexavar. I am trying to avoid moving to another treatment for as long as possible, since I also have multiple sclerocis and psoriasis, both autoimmune diseases, that make me a questionable candidate for ipi and other immune based therapies. So my treatment options are limited and I want to preserve them for as long as possible. The thinking is that since I haven't had any new tumors in three years that perhaps the adrenal gland tumor were some errant cells and the Nexavar is still giving me significant benefit. The only other tumors I have had this time are two in my lungs that shrunk considerably during initial treatment and haven't grown for about three years. At my last PET scan they did not light up at all, so we think they might not be active at all. Both my general oncologist and Dr. Daud, at UCSF Melanoma Treatment Center, conccur with this plan. Which makes me very happy, because this is the direction I wanted to take when I heard the news about the tumor growth.

 I am hoping to hear in a few days what surgical technique is recommended. My oncologist is talking to the SRS guys, the laproscopic guys, and the regular surgical guys to see if I am a candidate for a less invasive surgery than just cutting me open. In the meantime I am concentrating on having lots of fun, being with the people who I love, and trying to get my taxes done!

BTW, are there any fellow Melanoma Warriors out there who are Kaiser patients in the SF/Bay area? Haven't met anyone in quite awhile and would love to network with you!

Thanks to so many on this board who have provided me with information and support over the last four plus years. I have an intuition that I have many days, months and perhaps years of life ahead of me, and I intend to live each day as fully as possible.

Love to all!

Eileen L


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