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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NSNewf's picture
Replies 3
Last reply 3/20/2018 - 8:10pm
Replies by: Bubbles, Anonymous

Stay informed and know your sources.


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Anonymous's picture
Replies 9
Last reply 3/20/2018 - 4:31pm
Replies by: adrianc, Anonymous, NSNewf, DaveNB, Rob578, Bubbles, GeoTony

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Casey301's picture
Replies 7
Last reply 3/20/2018 - 4:21pm
Replies by: Casey301, bjeans, Janner

Hi all,

I recently had a shave biopsy, I believe it was a deep shave. I didnt know that an excision is suggested when a mole is suspicious, so now I am questioning why the doctor removed it with a shave biopsy. My pathology results are:

diagnosis: compound nevus with moderate atypia at the dermoepidermal junction, dysplastic nevus, see note.

note: the lesion appears narrowly excised (focally very close to the base). If any pigment remains or recurs at this site, complete conservative re-excision would be prudent. 

Gross description: the specimen grossly was oval shaped, measuring 6 x 5 mm on the surface and 1 mm deep. It was divided into two sections on the long axis. All of the tissue was submitted for processing. 

Miscroscopic description: there is elongation of the rete ridges with atypical melanocytic proliferation in single cells and nests. The epidermal component is seen to extend beyond the confines of the dermal component. Papillary fibrosis is noted. Dermal nests show maturation. 

The report doesnt seem to mention if its definitely not malignant or not. Do I need an excision to be 100% sure? Or can I be sure this isnt melanoma? I made an apt with my doctor anyway to discuss the results and ask for an excision biopsy. I would like it all removed anyway. I didnt understand what narrowly excised and focally very close to the base meant. It sounded like the shave wasnt adequate?

any help would be appreciated, thanks. 

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Anonymous's picture
Replies 4
Last reply 3/20/2018 - 11:26am
Replies by: Janner, Anonymous

Hi All, 

i just noticed a spider like “mole” on my hand today. It looked so shallow but still a little bit brown. I never noticed it before. I had three atypical moles before and panicked at once. However, when I rubbed it really hard with my finger and soap. It was almost gone. I am on a business trip today and cannot call my dermatologist and I am so stressed now. Can melanoma appear overnight or rubbed off by hand? I thought it might be some ink stick to my hand, but still so hard to wash it off. Thanks 


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Rob578's picture
Replies 24
Last reply 3/20/2018 - 7:31pm

7 Health Benefits of Bee Propolis

Monday, November 20th 2017 at 6:30 am
Written By:
GreenMedInfo Research Group
This article is copyrighted by GreenMedInfo LLC, 2017

Bees make more than honey.  They also make a waxy substance called propolis. And this "bee glue" is a powerful health balm.  In fact, studies show it has anti-cancer properties.
Dr. Seema Patel of the Bioinformatics and Medical Informatics Research Center, San Diego State University conducted a comprehensive review of the literature on propolis and cancer.  Dr. Patel found laboratory and animal studies supporting propolis efficacy against cancers of the:
• Brain
• Pancreas
• Head and neck
• Kidney and bladder
• Skin
• Prostate
• Breast
• Colon
• Liver
• Blood 

Propolis is astoundingly complex and contains as many as 300 active compounds.  These components were found to fight cancer in a variety of ways including:

Preventing the growth of new blood vessels to feed cancer cells (anti-angiogenesis)
• Preventing the spread or metastasis of cancer from one organ to another
• Halting cancer cell division
• Inducing apoptosis or programmed cell death

In addition, propolis was found to mitigate the side effects or toxicity of chemotherapy drugs used in the treatment of cancer.
Bees make propolis by gathering resin from pine and other cone-producing evergreen trees.  They blend the resin with wax flakes and pollen, and take it back to the hive. There they use the sticky mess to patch holes, seal cracks and build panels in the hive.
But propolis does more than architectural duty.  It also acts as an antiseptic barrier protecting the hive from contamination and from external invaders like mice, snakes, and lizards. In fact, the name propolis comes from the Greek meaning "defense of the city."
The antimicrobial properties of propolis protect the hive from viruses and bacteria. Researchers found that bees living in hives coated with propolis have lower bacteria in their body and also 'quieter' immune systems.[i]
And propolis doesn't just benefit bees. For thousands of years folk medicine practitioners have used bee glue to treat abscesses, heal wounds, and fight infection.  In fact, propolis was listed as an official drug in the London pharmacopoeias of the 17th century.
Modern studies confirm a long list of health benefits offered by propolis.  A search of PubMed shows over 2,000 studies on bee propolis.  Here are just a few of its health benefits.
1. Anti-Microbial Action
Propolis has a wide range of antibacterial properties.[ii]  It is also has anti-fungal and anti-viral powers.  In one animal study, applying a propolis solution to wounds helped speed healing in diabetic rats.[iii]
In children, propolis has been found to:
• Prevent respiratory tract infections
• Remedy symptoms of the common cold
• Prevent middle ear infections
2. Heals Burns
A 2002 study from the Journal of Alternative and Complementary Medicine found that propolis may promote the healing of minor burns.[iv] The researchers compared a propolis skin cream with silver sulfadiazine, a drug used to treat burns.  Study results showed propolis was just as effective as the drug in treating second-degree burns.
3. Prevents Dental Cavities
Greek and Roman physicians used propolis as mouth disinfectant. Modern studies show it may be effective in the treatment of periodontitis and gingivitis.
Many studies have also found that extracts from bee glue limit bacterial plaque and reduce tooth caries.[v]
Other studies show that propolis may even help regenerate dental pulp,[vi] as well as bone tissue,[vii] and cartilage.[viii]
4. Treats Parasites
Preliminary trials show propolis may eliminate parasites.  In one study people who took propolis had a 52 to 60% success rate in eliminating the parasite giardiasis.[ix]
5. Wart Removal
In a single-blind, randomized, 3-month trial, 135 patients with different types of warts received oral propolis, echinacea, or a placebo.  The results were reported in the International Journal of Dermatology. Patients with plane and common warts achieved a cure rate of 75% and 73%, respectively. The results were significantly better than those associated with echinacea or placebo.[x]
6. Beats Drug for Genital Herpes

Propolis is more effective than a common drug for treating genital herpes according to a study published in Phytomedicine.[xi]
For 10 days, 90 men and women with genital herpes applied either an ointment containing propolis flavonoids, or acyclovir (a drug used to treat herpes sores), or a placebo ointment.  The patients applied the ointment four times a day.
By the study's end, 24 out of the 30 patients in the propolis group had healed.  Only 14 of 30 in the drug group, and 12 of 30 in the placebo group were cured.
Like honey, the composition and health benefits of propolis will vary depending on the trees and flowers and the location where it is produced. You can find propolis in its raw form directly from a local beekeeper.  It's also in the "cappings" of honey – a crunchy mixture of pollen, propolis, and bees wax.
Propolis is also available without the honey. But extracts or tinctures of propolis are more convenient to use.  They are popular for boosting the immune system, and for their anti-inflammatory, antioxidant and anti-microbial properties.
You can also find propolis formulations for colds and flu-like symptoms, wound healing, acne, cold sores, genital herpes, and dermatitis.  They are available as creams, ointments, lotions, toothpastes, and mouth washes.
Oral propolis formulations can be found as pastes, lozenges, liquid extracts, tablets, and capsules.
However, if you have an allergy to honey or bees, you may also have a reaction to products containing propolis.
For more information visit Green Med Info's extensive research page on bee propolis. Are you a research buff or health professional? Check out our latest feature upgrades in the Founder's video here.
[ii] Grange, J. M. and Davey, R. W. "Antibacterial properties of propolis (bee glue)." J R.Soc Med 1990;83:159-160. 
[iii] McLennan SV et al, "The anti-inflammatory agent Propolis improves wound healing in a rodent model of experimental diabetes." Wound Repair Regen. 2008 Sep-Oct;16(5):706-13. doi: 10.1111/j.1524-475X.2008.00421.x.

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nat75's picture
Replies 2
Last reply 3/20/2018 - 11:06am
Replies by: nat75, ThinkingPositive

I posted a couple times on here about mole and last was about nurse telling me  biopsy was abnormal. I was stressing out, when I went to app dermatologist told me biopsy was basal cell I was pretty relieved. But while doing exam he found something called cutaneous horn on back of my neck. He said often it turns out to be squamous cell and took another biopsy. At this time I was pretty  numb with good news bad couldn't really think of questions I should ask. I know his is a melanoma board but does anyone have any experience or info about cutaneous horns? Does anyone know of a good squamous cell board or site ? I cannot find much information on this subject.

Also my first biopsy site has a black spot in it.. .I didn't have stitches does anyone know what might be causing this? After this new subject I'll stop making new post here since I don't have melanoma, thanks everyone for your help in my last post

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Shelby - MRF's picture
Replies 3
Last reply 3/19/2018 - 9:55pm
Replies by: CancerSpouse, Bubbles

Dear MPIP Community:

We have secured several dates for the MRF's 2018 Patient Symposia Series and I hope you can join us at an event near you. Registration for most events is now open and draft agendas can be found on each event page. Register for a symposium by going to our Educational Programs page. 

Here is the current list of patient symposia. 

  • April 7 - City of Hope Cancer Center - Duarte, CA
  • April 14 - Northside Hospital - Atlanta, GA
  • April 20-22 - CURE OM Patient Symposium - Denver, CO
  • May 5 – The Ohio State University/The James – Columbus, OH
  • May 11 - Abramson Cancer Center/UPenn - Philadelphia, PA
  • May 14 - UNC-Chapel Hill - Chapel Hill, NC
  • May 19 - Seattle Cancer Care Alliance - Seattle, WA
  • September 21-23 - Pediatric Melanoma Summit - Grapevine, TX

We hope to add a few more soon. If you have any questions, please let me know at or (202) 742-5945. 

All the best,

Shelby - MRF

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Hukill's picture
Replies 2
Last reply 3/19/2018 - 9:07pm
Replies by: CancerSpouse, Bubbles

I had just read where you can get nivo at 480mg every 4 weeks instead of 240mg every 2 weeks. I went to get my 41st treatment friday and my dr put me on the 4 week schedule which was great for me. I have been driving 5 hours round trip every other week since 06/2016. I do not feel any different from the higher dose and my dr told me I should not at this stage. 5 more treatments then we plan on stopping.

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tedtell1's picture
Replies 2
Last reply 3/19/2018 - 7:16pm
Replies by: tedtell1, Bubbles


I have been kind of miserable after my second treatment. I am getting NIVO every two weeks. Finally so miserable with soreness in all my sinuses, throat and coughing I went to ER. Diagnosis; Uvulitis; swelling of the uvula. Has anyone had that. Once doc looked down my throat he could see it was inflamed. Negative for strep and flu. Doc says no way of knowing if it is reaction to therapy or virus. Thoughts anyone. Had an oral steroid and it seems to have calmed down a bit this morning. Still lots of coughing and uncomfortable, and I really need to go back to work tomorrow. Any one with similar experiences?



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Hi everyone,

I was diagnosed with Stage 1 superficial spreading melanoma on my shoulder blade in 2015. 

I’ve been going to 3 monthly skin checks since.

I had my Dr remove a larger mole from my mid back 2 weeks ago, which I was notified the following day is atypical, lots of changes happening.. I head back today for wider margins.

Is this normal for Atypical moles? 

Any idea how much gets taken as a rule of thumb? I’m guessing not as much as when they took wider margins for my melanoma but just want to know what to expect.

I haven’t got the path report yet.

I’m located in Qld, Australia.



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Brent Morris's picture
Replies 7
Last reply 3/20/2018 - 8:36pm
Replies by: Mat, Bubbles, bjeans, GeoTony, adrianc, vivian, Anonymous

Is MPIP a greeting card or a platform for patient advocacy?  Can’t we do both?

Having seen the debate for several days precipitated by the limits of the forum being pushed and at times exceeded, I think it is time to ask a basic question:  Is this forum to function only as a source of emotional support?  In other words, is it to be solely an “online greeting card”?  One that can simply say: “So sorry.” “Hang in there!” or “Great!” - in other words - thoughts and prayers.  Without a doubt support is incredibly important.

However, anyone who deals with serious medical conditions like melanoma knows that the interface with the medical system is difficult and fraught.  Medical professionals and doctors in particular, are far from perfect. They are often time challenged and poor communicators.  Everyone has learned that the best you can do by yourself and for your loved ones is to be your own advocate.  Advocacy means that you attain as much knowledge and understanding as you can about your specific disease and you participate in shaping your care by taking an active role with those who care for you. You cannot have that knowledge and understanding without substantive information.  In fact, those without a “medical” background often benefit from translation of clinical data into common sense.  If there are individuals with the ability and willingness to digest and present the scientific and medical jargon into real life terms then I think they should be valued and encouraged.  The inclusion of the sources is a real benefit as well.  Not only to those with the interest in reading the data for themselves, but as a resource for their providers, and proof that the information is authentic.  This is the key to advocacy.  It is the way to help patients shape their own care.  It is sharing knowledge and understanding.  Providing information is not the same as telling or deciding for others what to do, it is enabling advocacy.  To me that is an essential and unique role for this forum.  Let the forum be the best that it can be!

Brent Morris, MD


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Antonio's picture
Replies 2
Last reply 3/18/2018 - 2:56pm
Replies by: Antonio, Janner

Hey there 

I m a member who lives in Italy . My father  , 75 years old, was diagnosed for an atypical spitz tumor in 2005. Tumor was successfully removed but in 2014 they Found mets on his lymph nodes that were surgically removed. 

His case was really complex and rare but we were confident that the mets would no spread in other in other parts of the body . 

He had a scan a couple of weeks ago and doctors found mets on his lungs and liver . We were all shocked .

He s a braf negative and will start a immunotherapy very soon . 

He lives on a sunny island, and  doctors advice him to have some sun protection when he goes out . Has anybody experience some sunburn from opdivo 

But most important question does anybody knows more about atypical spits tumor that  is rare ,and with  unpredictable potential . 

Thank you this forum is just fantastic!

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Raco's picture
Replies 6
Last reply 3/20/2018 - 1:01am
Replies by: Raco, Linny, dessie, Bubbles

6days ago on March 12, 2018 I had CLND under my left are, my Dr noted that he removed a 

sack of lymph nodes and sent to pathology. No results yet.

question: Has anyone had issues with the back of

my upper arm feeling numb and from time to time I 

get needle pain around the 5.5” incision area. 

Will not see surgeon until end of next week for follow up 

And to have my drain tube removed, as of now

i getting about 4.oz in each 24 hr period but it will

be removed When it’s down to 1oz every 24 Hr period

THE next plan is to start on Opdivo every two weeks for a year

any feedback appreciated 





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Replies by: TomW, keepthefaith11, Anonymous, Bubbles

My father was just diagnosed with stage IV on 3/5/18. His PET scan on 3/2 revealed at least 20 lesions in his brain, and metastasis all over his body including brain and bones. My family has been through a roller coaster the past 2 weeks and we’re looking for any encouragement or advice as we navigate through this new world of cancer.

He was hospitalized on 3/4 due to swelling in his brain, they began full brain radiation on 3/5. Dr. Panares is his oncologist at St. Jude, however we have not been thrilled with his treatment plans or aggressiveness.  We have a family consult with Dr. Hamid at Angeles Clinic on Monday and hopefully will see if there is anything more they can do to treat this.

His team at St. Jude does not seem to work together in a timely matter, when every second counts this becomes very frustrating. We have an oncologist, radiation oncologist, neurologist, and ICU doctor all working on this yet it seems they all have different ideas on what is happening.

My dad is unable to walk much, speak or swallow, although he does still understand what is said to him. We realize that at this point he is probably not eligible for clinical trials but are wondering if anyone else has been in this situation before and what you recommend? Or any advice on Hoag hospital, USC, UCI, or UCLA?

Any advice is appreciated- thank you all and thankful that this forum exists!

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geriakt's picture
Replies 4
Last reply 3/18/2018 - 9:47pm

I was diagnosed as 3B April 2015. After tumor removed and nodes removed in Sept 2015 I entered in to a clinical trial of 50 weeks of NIVO (25 treatments of Nivo). During that time  and until November 2017 I have had full body CT scans every 12 weeks. All negative. I finished Nivo treatment Sept 2016 and now I am on CT scans every 6 months.

My question is when can I move to CT scans every year or just stop. The CT scan are very expensive at about $5000 each out of my pocket.  I stopped contributing to the clinical trail because the CT scans at the treatment hospital cost $5000 each out of my pocket since I have a high deductable.  My other option is having CT scans at an Imaging Center for $2500 each.


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