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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Scanphobia sure doesn't get any easier...I want to believe I am still NED...I want to believe it will be a clear...YET...I worry they will find something...People tell me not to worry and think positive...If I think positive and it's not good...then I am totally destroyed...if I think the worse and it's a clean set of scans then I am relieved...this will probably never change!

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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ladyinnh's picture
Replies 13
Last reply 10/19/2012 - 11:11pm

Good afternoon all, I'm hoping I can get some advice from you.  I was diagnosed with Stage 3b melanoma in October 2009 and just completed a total of 10 months of Interferon.

My son is 17 months old now. Two separate oncologists have given me different advice regarding trying to get pregnant again. One said wait 3-5 years to try and one said 6 months to a year.  I'm 35 and my husband is 38.  I really want to try to have another child as soon as its safe but that beign said there is much talk that women can have reoccurences of melanoma when pregnant becuase your estrogen levels rise so much.

I've been told its a huge risk and I've been told it may never reoccur.  Even my oncologists dont' seem to have any clear information about how at risk I am of getting this again.

I could really use some advice, referrals to doctors I could call re: this and information.

Thanks all in advance!

One day at a time!

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sharmon's picture
Replies 11
Last reply 12/13/2010 - 4:44pm
Replies by: Jim in Denver, sharmon, Anonymous

Hi everyone,

Brents scans this past last week, after 9 months, where mixed.  Some measured a tiny bit larger than 2 months ago, but not as big as the baseline scan from February.  His doctor did not take him off the trial, for which he was grateful,  saying there is not significant growth.  Yesterday he is telling me he has some strange (discomfort in the lung area near where the growth was measured to be the most).  He will be scanned again in February. 

We are looking into the plan B for the next treatment.  He was retested for a whole list of mutations and is negative.  The NRAS and GNAQ results are still not available.  He was Braf negative when he went on the trial.  The arm  of that  trial he started in Feb. was for solid tumors and he did not have to be  Braf positive to begin treatment.

He feels fantastic,  great appetite, high energy, and no real pain to speak of.  His breathing is good also. 

We know that CT scans can show different things at different times and are not perfect.  This could account for the difference from this scan to last.

We also know that most trials require that you not have previous treatment with inhibiitors.  I am aware that it is not going to be easy to move onto the next treatment and want to have some options in mind aheard of the game.

Anyone out there who has failed  a MEK inhibitor and has moved on to another trial?  Your input and feedback would be greatly appreciated.

God Bless you all.

Sharon and Brent

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Carmon in NM's picture
Replies 3
Last reply 12/13/2010 - 8:09pm
Replies by: Lori C, lhaley, King

On Wednesday I'm scheduled for a full body CT and brain MRI to see if I am responding to the carboplatin/taxol/temodar Phase II trial I'm on. For such a long time (nearly two years) I didn't even think about scans but after brain mets in June followed by an adrenal tumor found in September, I find I am definitely thinking about this one. It isn't with the terror I had during that first year but flashes of anxiety are definitely popping up.

Plus, my oncologist, who I absolutely have loved and had total faith in, announced she is leaving UNM to take a wonderful position in the northeast in February.. She has assured me that all of her patients will be assigned to top oncologists and that she will leave them with a complete treatment plan. I trust her in this too and she has been such a caring doctor that I can only wish her the best - she deserves a life too!

The second infusion was much harder than the first one. I was hit really hard on the third day, no serious nausea, just extreme body and nerve pain. Also, the oral temodar caused me to faint one night resulting in a dislocated rib. I was so mad! It wasn't bad enough that I felt so horrible, then I couldn't breathe either! I actualy questioned my resolve to get through six cycles but just like the first time, on day eight it all passed and my usual optimism set in and I knew I can get through seven really hard days if it means defeating this beastie.

I find that about all I can manage to eat on days three through seven is broth and soft foods. It isn't that it makes me sick but that I have no appetite at all so I stick to nourishing things that I can easily get down. But boy, when day eight gets here, my appetite comes back with a vengence and I eat everything I can for the next three weeks to try to maintain my weight. Guilt free eating!

So if the scans show no new tumors and stable or reduced disease, I'm on for four more rounds. The next one on Dec 20th which means just like Thanksgiving, I'll be feeling the worst right through the holidays. But hey...I feel that I'm not doing this just for myself, I'm doing it for my husband, my family and all of the friends who have been there for me every day while my husband works out of state. The friend who rushed me to the hospital and saved my life when an undiagnosed brain tumor began bleeding into my brain. And the ones who have showed up every day to feed our horses and take care of outside chores when I've been too sick to.

I know this will sound impossible to newly diagnosed people, or those still in the first years of fear, but in many ways this disease has been an incredible gift by bringing me closer to the people I love and of learning to live fully in each moment with humor and joy. For everone else out there waiting for results, struggling to get through treatments, or caring for loved ones who are facing those things, I wish you peace and joy through the holidays and beyond! Carmon

Carmon in NM: Stage IIIB 9/2008; Stage IV 6/2010 with brain and adrenal mets; NED since 4/13/2011. It’s not what happens to you, but how you react to it that matters. ~ Epictetus

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Melanoma Mom's picture
Replies 13
Last reply 12/14/2010 - 3:01pm

Today our 14 year old son starts Interferon. Please keep him in your thoughts and prayers! 

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Anonymous's picture
Replies 2
Last reply 12/12/2010 - 7:35pm
Replies by: Sharyn, Anonymous

It has been awhile since Sharyn has posted. I am worried. Anyone know how Sharyn is doing????

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mimi0201's picture
Replies 6
Last reply 12/21/2010 - 10:22am

My husband has returned home from 7 days in the hospital after receiving 8 bags of IL-2.  We could use some reassurance that the numerous side effects will ease.  He's experienced most of the anticipated effects, with some extras.     He's pretty unresponsive, so it's had to judge what might be his biggest complication.  Kidney function is impaired, but lasix is helping with that.  I'm feeling kind of cast adrift, and could use some encouragement from IL-2 veterans.  Thanks.

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Anonymous's picture
Replies 4
Last reply 12/12/2010 - 4:02pm
Replies by: Anonymous, Janner

I had an odd mole on my finger in my teens.  It always caught my eye.  It eventually disappeared.  I've had early stage melanoma.  Should I worry that that mole, years ago, was a melanoma that regressed?  Or is it normal to have moles regress in teens/early twenties?

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claudia-uk's picture
Replies 4
Last reply 12/14/2010 - 9:07am

My husband has mucosal melnoma which has spread recently.

We received the CT scan results but don't quite understand them. We will have a hospital appointment in a week but it would be good to hear what other people are thinking:

Multiple sub-centimetre pulmonary nodules (left upper lobe 4mm, middle lobe 5mm.

No enlarged lymph nodes

Multiple hepatic lesions. Largest 5.7cm, this is heterogeneous and lies within segment 5/8.

A 1cm peritoneal nodule is present.

No focal bony involvement.


Does that all sound very bad? 5cm sounds already quite big.

Husband will start with chemotherapy in a week, but only 2 or 3 cycles and then he will go on to Ipilimumab compassionate trial.

We asked for PD-1 trials, but they are not available in the UK yet. As he has mucosal melanoma he is not eleigible formany trials and he was also tested negative for braf and c-kit, which seems that his only possibility at the moment is Ipi.


Thanks for your help!


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EmilyandMike's picture
Replies 1
Last reply 12/11/2010 - 7:46pm
Replies by: Lori C

Hello everyone:

I recently found a fundraising link for Tom McLaughlin who was featured in the NY Times article on melanoma clinical trials back in September. The story of Tom and his cousin was so sad.  I wanted to thank him for doing the interview and exposing the treatment of melanoma patients in these trials.  His mother sent me a link to the video below and it it a good one to share. Perhaps MRF has some suggestions on what we can do as individuals to make sure clinical trial rules are clearer and more fair.  These trials are the only real option for most people with advanced melanoma and because melanoma isnt like most cancers the clinical trials should reflect this!  And it really pisses me off that there arent more trial options for stage 2/3 which would logically seem to be the best time to do treatment - BEFORE it spreads.  Melanoma is so unfair but these clinical trials should not be.

Video from Nov

NY Times article from Sept

Fundraiser for Tom


Thanks for listening - felt like venting


wife of Mike, stage 3a

Our experience with melanoma:

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Anonymous's picture
Replies 0


Hi Linda,

Happy to see you post. I have been wondering how Cass is doing. She is in my prayers and I always think about her.

Any update on Cass would be great, we all care about her.

Tell Cass Jan sends her love & hugs.


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killmel's picture
Replies 15
Last reply 12/15/2010 - 1:12pm



I am a newbie here and not sure if I am posting correctly to get some info from MPIPers who are taking or have taken PLX Braf or GSK Braf or IPI compassionate use 

I am  stage 3 unresectable with a few tumors in my leg. First dx 2006. So far, just have had surgeries.

My onc gave me 2 options.

1. Braf inhibitor (Onc says average durable long term response 6-8months) or 

2. IPI compassionate use (Onc says could have severe autoimune side effects, response rate average 20%.)

My onc did mention trials combining Braf & MEK drug willbe coming available. Anyone in a BRAF/MEK combo drug trial?

So here I sit, weighing benefits ve risks of Braf vs IPI. I sincerely would appreciate any feedback.

Thank you so much for taking the time to post a reply.


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alicia's picture
Replies 20
Last reply 3/25/2011 - 12:48am

Hello everyone, this week has been crazy!!! Ill give you a bit of my hx: in 2006 I was diagnosed with my first primary melanoma stage 3. It was a Clarks level IV with sentinel node (+). I did interferon treatment 35wks shy of 11 mo. July 2010 I was diagnosed with 2nd primary Mel Clarks level 2 it was thin so no SNB just WLE. Now here we r in dec 2010 and I have 3rd primary Mel this report says Clarks level IV at least and probably will have residual when WLE is done. The problem is I already had big surgery to lt groin in 2006 and this new primary in lt lower back. Surgeon is referring me to Duke because he thinks I will need LND because where lymphatics were disrupted during 1st surgery a sentinel node can not be detected. He put me thru lymphoscintogram and found that lesion drains to both groins nodes. Has anyone else experienced this and what should I expect from node dissection to both groins. It's been over a year since I've had a pet scan and makes me worry what could be going on inside my body. Anyone else going to Duke???? Who is the best surgeon for this??? Thank you all in advance I'm so scared:(

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LynnLuc's picture
Replies 2
Last reply 10/11/2011 - 4:30am
Replies by: Anonymous, King

12 weeks have come and gone...had my last doses on Wednesday in the 12 week trial titled "

Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy Comprising gp100:209-217(210M) Peptide, MART-1:26-35(27L) Peptide, gp100:280-288(288V) Peptide, NY-ESO-1 Peptide, and Montanide ISA 51 VG in Patients With Resected Stage IV Melanoma". Had to have a couple days of thyroid scans...and as the radiology doc says.."Ms Lynn it appears yout thyroid has conked out and we need to find out why!" My onc says it's expected and actually a good sign the immunotherapy is working since my T 4 is elevated...I don't have any of the good side effects like losing weight and having energy etc etc...I am butt dragging tired! My onc does want me to see the endocrine doc week I have my CT/MRI scans ( eeeek!!!) to follow up with the trial and see where I am at and another apheresis...hoping to still be NED and will continue to do this trial another 12 weeks....Dr Weber says for now he doesn't want to change a thing as I am doing extremely well

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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Melanoma Mom's picture
Replies 64
Last reply 6/29/2013 - 11:08am

First off - I am not a medical expert .... I am just a Mom who has a 14 year old son who was diagnosed with melanoma this past September. While it had not spread to his sentinel nodes, the lesion was 14mm so we're talking serious melanoma. He starts Interferon on Monday, Dec. 13th.

I wanted to speak with a physician who would complement the amazing team we work with at Dana-Farber. I  was able to meet with a physician in my area that has become very interested in the nutritional approach to curing cancer and other illnesses, after his own cancer diagnosis in the 1990's.

While nothing is 100% certain to help inhibit melanoma, these are some of the herbs that we spoke about. Dr. S was also extremely supportive of eating a healthy diet with foods that would contain many of these vitamins/herbs. But because I am dealing with a teenager, it will be easier to approach some of these from a supplemental  approach, while also planning to instill new recipes into our evening meals. (Indian, etc.)

I have two sources of information - "The Definitive Guide To Cancer, third edition" by Lise Alschuler and Karolyn Gazella. I have an article titled, "Nutrition and melanoma prevention" published in 2010. If you would like a copy of this article E-mailed to you, please leave your E-mail as a reply and I can send it to you. The book is readily available at bookstores.

After studying the literature, the supplements that I plan to add to our son's diet are:



Panax Ginseng

Vitamin D

I toyed with Fermented Wheat Extract (not germ!) - also known as Avemar - but the cost is extremely high - about $200 for a month's supply - so I won't be starting with that initially. 

I would suggest any supplements that you add to your diet should be presented to your Oncology team. I am thankful that our son's Oncologist supports these extra measures. 

So, no major rocket science going on here, but it's worth trying!

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