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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Brent Morris's picture
Replies 6
Last reply 3/20/2018 - 8:36pm
Replies by: Mat, Bubbles, bjeans, GeoTony, 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

BMorris

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Coconnor16's picture
Replies 5
Last reply 3/20/2018 - 7:36pm

Just had my 3rd ACHT with cortisol test and my readings were faintly readable . Has anyone else been dealing with this issue and what are the side effects ? I’ve been told I will have a adrenal replacement therapy the rest of my life. I don’t mine it but really don’t want to keep taking pills forever??

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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.
________________________________________
References
[i]http://www.beelab.umn.edu/prod/groups/cfans/@pub/@cfans/@bees/documents/article/cfans_article_435997.pdf
[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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Jsneathen21's picture
Replies 9
Last reply 3/20/2018 - 4:55pm

I am 26 years old it took approximately 2weeks for the dermatologist to tell me my results of this even... They sent it off for second opinion at a university even.. To tell me today I have this? And that it's rare in my age group and at all!! Does any one know anything about this rare type? Please let me know thank you!

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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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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 news...so 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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samiam's picture
Replies 6
Last reply 3/20/2018 - 10:21am
Replies by: samiam, Jamie1960, Janner, Anonymous

Two weeks ago, I went to my dermatologist for an abnormal mole on my mid-back. I'm a 34 year-old male. The derm did a punch biopsy and the results have come back positive for "malignant melanoma  approximately 0.2 mm in thickness." The notes say "The melanoma is only focally present in the dermis. The lesion extends to the lateral margins." it also says "Abnormal melanocytes disposed as solitary units and in nests are present within the epidermis and the upper part of the dermis"

Other information from the pathology report:

Mitoses/mm^2: <1

Regression: present

Ulceration, intravascular involvement, satellite metastasis, and neurotropism are all absent. 

T classification: T1a

Now, I thought the T1a classification and 0.2mm thickness was relatively good news, but my dermatologist wasn't willing to comment much and said that we still won't know the stage until I get a wide excision (scheduled two weeks from now). I definitely was not getting "good vibes" from her about my outlook, but I may be looking for the worst.

My questions: Is the stage determination (T1a) from a punch biopsy unreliable? Should I worry that regression is present? Do you see anything else that would cause you to worry about this being more than T1a?

Thanks for your help in advance.

 

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Mapes84's picture
Replies 5
Last reply 3/20/2018 - 6:10am

Hello all! I was hoping to gain some insight as to why my derm may have decided to perform a shave biopsy on my last appointment. Her decision to do this is causing me some anxiety!

A little history: I was diagnosed with a melanoma in situ in 2009 at the age of 25. I had a WLE (no SLNB), and haven't had any problems since. I have been attending my check ups twice yearly, and I have had two other spots biopsied since the melanoma. My derm performed punch biopsies for both of these. One of them came back atypical, but they were both benign.

I had a check up on Thursday, and I showed my dr. a spot that has had me particularly concerned. I noticed one day that it had a strange appearance (irregular border, two shades of brown) and made a mental note to "watch it", as I had a check up approaching within the month. Almost overnight, the spot (which had been completely flat) started to feel elevated. A few days later, it started scabbing. Eek.

Anyway, predictably, she said she would do a biopsy "to be on the safe side". As usual, I turned and looked the other direction while she performed the biopsy because that stuff turns my stomach :p . Suddenly, I felt her putting a bandage on, and I realized that it was over way too quickly. I asked her if she had performed a shave biopsy this time, and she stated that she had. I asked her (politely) why, since we have never done this before. She stated, "I have my reasons" (?!), then mumbled something about catching it really early if it was anything bad.

I don't claim to be a doctor, and I don't know a ton about this stuff, but I was under the impression that shave biopsies are a big no-no if melanoma is even remotely suspected. Was this done out of laziness? I don't understand. Is it time to look for a new dr.?

I am still awaiting biopsy results, but my next question is this: I am aware that a shave biopsy can interfere with staging if melanoma is present. Can a shave biopsy result in a false-negative? This is really bugging me.

Thank you in advance!

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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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Amanda&#039;s Mom's picture
Replies 5
Last reply 3/19/2018 - 7:56pm

My daughter now has to decide on a clinical trial of Cavatak & Ipi or standard of care of Tveck(sp?).  Has anyone done this trial?  ANy suggestions?  She is 34.  

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

Greetings;

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?

Thanks,

Ted

Ted

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bjeans's picture
Replies 10
Last reply 3/19/2018 - 6:59pm
Replies by: Bubbles, bjeans, Linda5, Janner

My husband had an SLNB - actually 3 SLN's - and a WLE on 3/9. The SLNs didn't look abnormal, though the surgeon said that didn't mean the melanoma hadn't spread. And it had - to the right axillary and supraclavicle SLNs. 3C. 

It wasn't unexpected, given Breslow (9+) and ulceration, but still was a gut punch with tears (mine). OTOH, we've been impressed and comfortable with the melanoma center team, and assuming no negative surprises from a brain MRI, CT, labs, EKG, etc., he'll be in a 2,000 patient study for nivo/ipi (modified) or nivo, with the first infusion 4/6.

Good timing - the day we met with our oncologist, he had just found out the study was closing four days later. He changed our appointment time so he could answer all of our questions and spent two hours with us. We met with the research coordinator for another couple hours.

And thank you all. Reading Bubbles' *important!* primer and thoughtful guidance, and posts by so many of you has grounded me - and my husband. He's a calm one-step-at-a-time guy; I'm not. But thanks to you and the people at the center, much of the terrible first days' anxiety and terror has dissipated. Information and a plan helps.

This is bad stuff but we're lucky: for the study, the melanoma center being <30 minutes away, for a nearbyoffice my husband can work in on infusion days (if he feels well) instead of driving into the city, for options if he can't complete the study. Plus a $50.00 per visit debit card from the drug company for date night. It could be worse. 

Beth

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Anonymous's picture
Anonymous
Replies 13
Last reply 3/19/2018 - 12:08pm
Replies by: Hukill, GeoTony, Anonymous, Bubbles, Mark_DC, bjeans

Hi, 

My husband is on approx his 18th Nivolumab treatment.  He has been pretty lucky in regards to side effects.  The only thing really bothering him is that his mouth is so dry, and he seems to be losing his sense of taste.  He doesn't have much saliva at all, yet he sometimes gets a thick slimmy substance around his gums and on the roof of his mouth.   This has been going on for about three months. None of these conditions are listed as a side effect for Nivolumab. We have mentioned it to the Dr. who has made some suggestions to help with the dry mouth but won't commit one way or the other if it's a known side effect.   

I searched on this forum and found others who have had issues with the dry mouth, but nothing about impaired taste. (Other then some older post from people on Interferon).  

So I am wondering if anyone else has experienced this.   We want to make sure that the treatments are the cause and that there isn't something else going on.

Also curious if it will most likely be permanent.

Thank you!

 

 

 

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jjk17's picture
Replies 5
Last reply 3/19/2018 - 8:40am
Replies by: jjk17, Edwin, marta010

Hey Y'all!! I know I haven't posted in a while, things have been pretty uneventful which is ok! I will be on Infusion #5 next week. My question for anyone is, has anyone expierenced headaches while on the Optivo?? I have been having then quite freaquently during the week and no matter what i take really takes them away....My Oncologist said that this shouldn't be a side affect and possibly wants to get a brain MRI. Just wanted some input.

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