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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Replies by: Sherron, Lori C, JuleFL

I am trying to sort through my own feelings and emotions of the past two years - being a caregiver for Will, the whole nutty clinical trial process, doctors who should know what they are talking about but didn't - all of it.  I'm also trying to write about it, hoping that my experiences might be interesting and even useful to others. 

If anyone would like to dialogue with me about these things, please email me!  Brennan07at     I am still grieving in a way that I cannot quite understand - I thought I was well aquainted with grief but found out this was a very different experience than any other I've ever had.    I have tremendous guilt, anger, and just sadness. 

I know many people have had wonderful hospice experiences.  Unfortunately, I did not.  The hospital we took Will to was entirely unused to dealing with people undergoing advanced cancer treatment (it was a local community hospital, same hospital Bill went to two weeks ago) and pushed a DNR and hospice from the moment we arrived.  The hospice team insisted on pushing their views at every turn, and I had to fight extremely hard to get Will treatment while waiting for actual information and facts (from his oncology team at Rush and from test results).  They did not want to do any acftive treatment; so sure they were that it was futile.  I kept wanting facts, they kept treating me like I was insane.  "He's very sick", they kept telling me.  I wanted to scream, "Yes, not having recently arrived on this planet, I'm aware of that!  I've been taking care of him for a year and a half!"  In the aftermath, they (the hospice people) kept sending me "How to get through your first Christmas without your Loved One" booklets and such (I'm Jewish) and warning me against "feelings of anger". 

Well, I have a lot of anger - towards a system that forces patients to sift through insane amounts of highly techinical information at the most difficult time of their life to unearth appropriate clinical trials, towards pharmaceutical companies that are motivated by profit solely, towards Md/Ph.Ds who should , but do not, have any idea what they are talking about at critical junctures when lives depend on them - and that's not even touching on insurance companies.  I was also completely unprepared for the emotions I would experience as a caregive; how focused I became on Will to the degree that I really felt we were one person - and then when I lost him, felt absolutely ripped in half. 

Anyway,, I would really like to talk (I do best via email but can do phone) with others on some or any of these subjects! 


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Replies by: Janner, lhaley

Hi all,

I am just looking for some thoughts about an issue that has just come up today for me.  I was diagnosed with melanoma recently (0.82, Clarkes IV, mitotic rate<1, no ulceration, no regression, brisk lymphocytes) on my lower foot not that far from my toes and had a WLE with skin graft and SLNB which came back clear thank goodness.  I have been sitting still for almost three weeks now which has been very hard on me and my family as I have a two and a half year old and a 3 month old baby.  The graft still hasn't healed all that well.

Today in a clinic appointment with a resident/registrar (the surgeon is on holiday still) I realised that the circular dent in my foot is actually not around where the mole was, but around half a cm out and up toward my thigh, rather than down toward my toes.  This means that rather than a 1cm margin from the edge of the melanoma it is more like 0.5cm as far as I can tell.  This seems to have come about because of the way the dermatologist had left the scar.  She did take a photo but I am not sure if it will show where it is located on the foot or if it is just of the melanoma itself.  The margins on the tumour were clear with the initial biopsy and there was nothing further in the WLE tissue on microscopy/staining. 

I can not quite believe this is happening and I have only just realised this.  I am also very concerned that it looks like the depth of the excision only goes down to the fat layer rather than fascia (the district nurses dressing my foot daily also think this).  Obviously this will all need to be discussed with the surgeon when he comes back but I am anxious to try and figure out what to do as I need to get it done asap if I need to go back to theatre.

Any comments would be really welcomed, I am finding this whole thing unbelievably difficult to digest and what this means for me and my family.

Thank you.

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Solodad's picture
Replies 14
Last reply 7/18/2011 - 6:57am



I posted this on Cancer Compass, then found this board. Seems like maybe a melanoma-specific board might be worth a try. Anyway, here's my story.

In July of 2010, the removal of a mole on my left bicep led to a stage IIIa diagnosis (one lymph node with 1mm focus of cancer cells). Had the SNB, then a full axillary node removal from left armpit (no positive nodes there). I did not do the Interferon for reasons I won't go into here, but radically changed my diet and added various supplements which supposedly are beneficial. (AHCC, Astragalus, AveUltra, Vitamin D, Modified  Citrus Pectin, Boswellin, Bromelain, Beta Glucans, Reishi and Maitake capsules, Melatonin, Flax oil and flax seed, juicing (vegetable and fruit), broccoli sprouts, organic produce, no meat, no cheese, no processed food, no soda, no sugar, no alcohol, etc. etc. etc.) 

The thing is, I can't think of anything else but melanoma for more than a few minutes at a time. I feel constantly worried and on the verge of bursting out in tears. I'm constantly researching one thing or another about melanoma online and it pretty much always turns out to be more bad news. Every little twinge or ache in my body makes me worry. I keep having regrets about not doing the Interferon treatment, and wonder if there is anything else I could be doing. The website always turns out to be a total waste of time, since there's either nothing for which I qualify (a good thing, I suppose), or it's so far away and so complicated that it won't work for me, or there's no guarantee I'd even get what they're testing. Worst of all is the thought of not being around for my young son, who doesn't even know what's going on with me yet.

I guess I'm just looking for some feedback, some advice or support, or some... well, I don't know. I don't have anyone with me or near me to give me a pep talk or clue me in on things I should be aware of. I thought maybe just hearing from others might help  somehow. How do you "disconnect" your mind from melanoma? How do you turn off the worry?

- solodad

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Replies by: LynnLuc

Do You Have Questions that You Would Like Answered during the Vaccines & Melanoma Therpay Webinar


Join us on Monday, January 10th at 7:00pm (EST) for an overview and up-to-date spotlight on vaccines & melanoma therapy. Presented by MIF Scientific Advisory Board Member,  Dr. Jedd Wolchok, MD,  PhD, Director, Immunotherapy Clinical Trials at Memorial Sloan-Kettering Cancer Center. Be sure to register today!


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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killmel's picture
Replies 1
Last reply 1/4/2011 - 8:08pm
Replies by: Linda J

Hi Linda,


I read in a post that you going tomorrow to sign consent forms to start the trial. What trial are you doing? I read that you were interested in the BRAF/MEK combo trialis is that the trial you are doing??

I would like to get info on this BRAF/MEK combo trial. I have been looking for info on this trial. Would you know the clinical NCT clinical trial number.

Linda, I wish you lots of success with your new trial. If you have any info on the Braf/MEK combo trial (like criteria requirements and exclusions) , I would sincerely appreciate you shaing the info. Perhaps the doctor/study nurse at PMHH might be able to tell you. Thanks

Stay Well,


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nicoli's picture
Replies 13
Last reply 11/2/2011 - 1:43am

I'm starting biochemo ( the University of Colorado cocktail) Thursday the 6th. Will be in the hospital for one week, home for two weeks then back in for one week, etc. for a total of 3 months. I would really appreciate prayers and I will try to keep in touch to let you know how it's going and what others can expect if they choose this treatment.

Nicki, Stage 3b

Be strong and take heart, all you who HOPE in the Lord. Ps. 31:24

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Linda J's picture
Replies 1
Last reply 1/4/2011 - 8:35pm
Replies by: emilypen

I hope everything went well today.
I'm going tomorrow to sign consent forms to start the trial. How long did it take for the trial to start from the time you signed the forms? I feel new nodes pop up everyday and I feel like the treatment can't start soon enough.

I am hoping that you got good news this week and I'm hoping for miracle results for me too.
All the best,
Linda (I'm from Barrie)

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MarioR1's picture
Replies 4
Last reply 1/4/2011 - 8:01pm

Does anyone know if they still make the black "Fight The Beast" bracelets. Mine of 6 yrs finally broke.

Thanks, mario

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Would you mind emailing me at


Lisa - Aust

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Gracie's picture
Replies 5
Last reply 1/12/2011 - 4:08pm

 On Dec. 15th, I received my 5th dose, 1st of maintenance, of Ipi or placibo with minimal if any side effects up to this point. On Dec. 23 I woke up with a rash behind my ears.  I stopped using any lotion or perfume and within three days, had a raised, welt- like rash around my neck and shoulders. I use hydrocortizone cream with little relief.  It has not changed in 10 days.  It itches if I touch it.  I can't think of anything that could have caused the rash.  I have appt. with Oncologist on Wed the 5th. Has anyone experienced small welts in the form of a rash due to Ipi treatment?  Is it unusual to have rash around neck and shoulders? 

Gracie, 3b

cancer is in my life, but is NOT my life

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The Gambler's picture
Replies 7
Last reply 1/6/2011 - 12:15am

The subject is not my wife .....Mine is the lovingwife Deb not to be confused.She is my life Piolot weather on the back of our bike on an adventure or next to me with support and all the love she can give and give.

Well I thought I was done with Mel as of last July giving up my lymph Nodes and we were looking forward to December  fresh exam and PET Scan with a new good outlook for the new year. Well then came the phone call from the Onc and's back more melanoma and another tumor.Altho the lymph nodes,lungs,liver and assorted vital organs all not showing currently  (good for us )...but  it has found it's way to my brain it is a tumor the size of a golf ball  ( I could have been more satisfied with a big toe instead ).Well the next 4 days were full of all the worst possible Ideas of what was coming up next.Today was the meeting with the neurosurgeon for Deb and i learn our fate.Our warrier Bill58 has been fresh in our memory so we hold on for some promise.The surgeon was went through every item of every detail  to the point Deb and i could feel confident ( how do you go from terrified with brain surgery to be OK with it ? ).Well it is going to be surgery and not radiation unless he is forced he favors surgery to be least amount of potential other complications.I asked the question of how long did it take to grow in the brain and his estimate was about 6 weeks,he told me as fast as Mel spreads and grows I do not have the luxury of time the longer it growd the more damage happends i am already notice issues in speech.

.I still feel one of the best things i can do as take in all the best nutritional foods and a couple vitamins to support my immune system as best you can....OH yea and to make sure my wife knows daily I love her.

Well off we go to kill some Mel ass,,,wish us the best..

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LynnLuc's picture
Replies 4
Last reply 1/4/2011 - 9:37pm

Just bummed and walking back in my mind again...

In 1992 0r 1993 ( I forget!)  I had that spot on my neck that looked like a flat brown long freckle about 1 in long. The Army doc's sent it off to Walter Reed ( my ex was stationed in Stuttgart) and the report came back as Lentigo maligna and that that it was not likely to spread to other parts of my body although it was still melanoma... told me not to worry...

Then in 2000it came back in the same place as the purple round spot raised up like an eraser on a pencil.

Gross Description:

 Diagnosis: Malignant Melanoma. Clark's Level 3. Tumor Thickness 1.45mm. The Margins of Excision appear uninvolved. Consider re-excision.

 Microscopic Description:

Within the dermis is a tumor composed of sheets of mildly atypical melanocytes some of which are pigmented. The pattern is consistent with malignant melanoma and involves a widened papillary dermis. Unequivocal invasion into the reticular dermis is identified. There are a few atypical melanocytes within the epidermis although pagetoid spread is not a prominent component. Tumor thickness is measured 1.45 mm. The margins of excision appear uninvolved. A re-excision  is a consideration. Correlate clinically.


SO..I went back and had it re-excised...and  5 sental lymph nodes removed from my neck...all were clear. Nothing was recommended as follow up.


In May and early June 2009 I was having trouble breathing and a few other issues I found out something was growing close to my superior vena cava and if they didn't stop it -it would cut off all blood to the top half of my body and I would die... when they used a Storz video mediastinoscope at Mayo Clinic and the surgeon found a very enlarged black right paratracheal lymph node they cold only get a few bits of tissue for biopsy purposes but they couldn't remove wasmetastatic malignant melanoma. They recommended radiation and Temodar and told me I would be dead in 6-9 was devastating... The surgeon said he would not consider surgery to remove it because of the dangerous location of it...he said it would need to get down to the size of a bb before he would consider surgery.

The chemo and radiation had was keeping the "thing" inactive...

In Feb 2010 while getting ready for a trial in Seattle I had a PET and my SUV local North Dakota onc didn't want to anything until it got "bad"...and decided it was time to go back to Mayo for another opinion again...this time I asked about surgery and they set up a consult...since I had no spread and it had just begun to show activity after several months- the surgeon agreed to do a Mayo onc was under the impression it was 4- 4.5 cent melanoma  in a single lymph node...the surgeon did say he saw a little spot from the initial tests a year before that had no changed in size or shape...but wanted to remove it by wedge resection as well...March 26, 2010-It was a rough surgery and he took out 3 lymph nodes...the middle one held the melanoma and it was actually 6.8 cent. A lot of the melanoma was necrotized and that is why it didn't show up on the PET. The tiny spot he removed  by wedge resection was just a lymph node and not melanoma..

Now I in the second 12 week cycle of my vaccine trial at Moffitt and I am still NED...I hope it never comes back...

I am feeling very blessed and I am also feeling very guilty...I want to know why I am doing well and some of my friends aren't...did my original diagnosis of Lentigo maligna play a role in it? I want to know why I am different...any idea's...Hey out there?? I have 3 friends not doing so hot right now and I am bummed out. 



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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Noramott's picture
Replies 1
Last reply 1/3/2011 - 7:53pm
Replies by: Janner

My friend had his melanoma behind his ear and was cut quite a ways  down on his neck. 


The report says:

Pre Operative Diagonsis:  238.2: Preop Dx Atypical Melanocytic Proliferation/Melanoma Accession


Archival material and the pathology report have been reviewed.  Some sections exhibited residual proliferating melanocytes with atypia however these are adjacent to the previous biopsy sight and demonstrate no evidence of dermal involvement and the margins are widely clear.

Gross examination:

The specimen is labeled "R neck lesion: one suture superior, two sutures inferior" and consists of a teardrop-shpaed tan skin, 5.5X3.7 cm, with attached subcutis tissue, up to .5 cm in thickness.  A single suture is present along one edge designating the superior margin with a double along with opposite margin marking the inferior margin.  The single suture will be assigned as the 12 o'clock position and the double suture the 6 o'clock position using clock face designation.  


Then he had other places removed and this is what it says:

1) Skin, Mid Superior Back:

Pigmented Compound Lentiginous Nevus with Archituectureal Atypia, Cytologic Pielmorphism and focally involved margins.

  2) Skin, mid inferior back

Pigmented compund nevus with focally involved margins.


So if anyone can help tell him what this means, that would be wonderful.  There ought to be a section at the end that says, "all these big words means blah blah blah."  Thanks for any help.


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Linda J's picture
Replies 1
Last reply 1/3/2011 - 7:32pm
Replies by: Anonymous

I am considering doing the braf/mek combo phase I trial at PMH in Toronto. Are people seeing good results with these drugs?

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kinthai82's picture
Replies 1
Last reply 1/10/2011 - 7:45pm
Replies by: kinthai82


Happy New Year!

My name is Cynthia Chen. I am a medical student in California and will be graduating in May of 2011. I have long been an advocate of raising awareness, fundraising, and research for melanoma.

I, along with one of my classmates, would like to create a video on melanoma awareness.  We want to recruit several people to put in the video who are either melanoma survivors or friends/family members who have lost someone to melanoma.

We are located in the Orange County and people from Los Angeles, San Bernardino, Riverside counties are welcome! 

If interested, please contact me via this post, email (, or call me at 510-717-9782, and I will provide more details.

Thank you for your time! We will win the fight against this awful cancer!

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