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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buckytom's picture
Replies 5
Last reply 5/14/2013 - 12:23pm

Working through my doc at Mayo I started the 14 day on/14 day off Leukine treatment on April 23 - last of the first round treatments was on May 6. Did not have any side effects the first week - started to feel it second week - but the worst was the week AFTER i was done with treatments, still feeling very fatiged/achy/headache yet today - 6 days after my last treatment. Does anyone have any experience where their side effects came after their last treatment? Just trying to gauge when I can expect to feel a little better - and what the next round of treatment might be like.

Any help would be appreciated!


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mike_nj's picture
Replies 29
Last reply 5/18/2014 - 12:53am

Just wanted to post that my yearly scan was clear and now almost 9 years out since progressing back in August of 2004.  Blood tests will be done next week.

Lately, I have been reduced to chest X-rays on an annual basis, after going through all the frequent Ct & PET scans in the early years.

I had my recurrence from a stage 1A lesion on my right upper arm in 2004 after a 5 year interval, and then had 17 nodes removed from my right axilla with 1 macro sized positive node, followed by 5 doses of radiation, followed by 10 shots of the mel43 vaccine in a clinical phase 2 trial developed at UVA.  I started a supplement in 2004 regiment that I pretty much keep up every day with mostly items from the Vitamin Shoppe.  Lymphedema developed in my right arm and I wear a compression sleeve and sometimes I use the FlexiTouch masage machine but my arm garment is pretty much ruined from wear.

 Very few stage 1A lesions recur overall, so I just accepted the "bad luck" as my surgeon pointed out, and moved on.

So, I am thankful to God for this grace period in this stage 3B holding pattern, and I pray for the well being of all fellow patients here and their caregivers

I hope this post gives some new patients some added hope.  Since my recurrence, I see that treatment for melanoma have been changed very rapidly and I pray that more good choices for adjuvant therapy become available to patients that have a higher risk of recurrence and that the treatments for stage 4 melanoma can halt or fully eradicate this disease.

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I am stage IIIC since July 2012.  I had a relative small fatty tumor on the underside of my forearm close to elbow.  This happens to be the same side where I had the lymph node dissection late last year.  They have told me the fatty tumor was nothing and has not shown up on any scans.  Over the last 4 days though, I started having a little pain and it began to swell and is tender to the touch.  Has anyone heard of melanoma attaching or spreading to benign type tumors?  I believe I need to have it checked immediately.

Thank for any comment.

Everyday is a Gift so Fight Strong, Live Long

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Replies by: mel123, Anonymous


Hi there - I went to the doctors recently about an itchy mole that I had on my bottom.  She thought it was fine but said it was up to me if I wanted to see a dermatologist.  So I decided it would be a good idea to get it checked.

Upon arrival I was immediatly told it was 'suspcious' and she wanted to remove.  She asked if I sunbathed nude because of where it was, to which I confirmed I didn't, never have and that part of my body had always been covered up.  She clearly didn't want to believe me as she went on to say that I probably wore something more skimpy when I was younger.  I know this is not true and can see from the whiteness of my skin in that area that it doesn't see sun.  What I can tell you is I have olive skin that easily tans, I hardly have to see the sun to get colour.  I have always put sun cream on and the most of an issue I had was prickly skin on my arms and chest when I was a teenager (which was caused by the suncream blocking my pores -especially waterproof types- so I tried a million different types, until 'allergy' type sun cream was invented and helped).  So if I was going to have anything that was sun related I would fully understand if it was on my arms, legs etc that have seen the sun, but not on my botton.

Anyway that evening she took it out, said that she thought it would be fine.

A week later, I had a call to come back and was told that it was melanoma, but the good news it was less than 1mm.  I was told I needed to return so she could remove more of the area and then would need to return every 3 months for the next 3 years.  I left in total shock, not really knowing what to say.

That evening I researched all over the internet and got progressivly scared at the information.  How it could spread, life expectancy etc.

Next day I went back and had more of the area removed with 11 stiches.  Whilst I was there I told her again that I have always been covered in that area, but again she said it must have been when I was younger.  I asked a few more questions to get clarification - ie so this is a stage 1 and what about my other moles and what else will happen and left not really knowing much more than I'll get a call or letter to confirm the results from the latest area she removed in a few weeks, to book an apointment with the nurses to get the stitches removed and she'll see me somepoint in the future...

So I'm confused, I have melanoma on a part of my body that didn't see the sun, but I'm told its sun related.  I am covered in moles and freckles and always have been.  I tan easily but always put sun cream on.  I'd say most of my moles and freckels are not of an even round shape, they are all mostly of odd shapes, again they've always been like this since I can remember.

So I don't know anymore, I don't know if I should be scared that every 3 months I'm going to have more and more removed, that its spread, that I'm going to see my 2 year old grow up.  If we are going to be able to have the other child we were just planning for now.  Its all just not clear for me.

Can anyone help advise in anyway please?

Thank you.

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Hi all,


My wife has had her 3rd dose of Yervoy last week. The day after she had some bad dizzy spells. Since then she has had small what she call waves of dizzy spells.....but they do not seem to last that long...this morning so far nothing...just curious if anyone has experianced this as well. Thanks

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Leaf's picture
Replies 7
Last reply 8/30/2013 - 1:20pm


My father has Stage IV Melanoma.  I don't really know a lot of information, nor do I understand a lot of, but I want to help anyway I can.

I'm going to try my best to explain the situation, but like I said, I don't know a lot, so perhaps I will try and keep this more general.

The insurance company denied payment for a PET scan my father had last August because they deemed it to be "not medically neccesary."   He has appealed it and it is currently being "reviewed."  I have been trying to do some research, and believe that PET scan application would clearly be classified as Staging, something that is in fact neccesary.

I feel that this scan was clearly neccesary and the insurance company is just trying to see what they can get away with.  However, more recently, my father has had two more scans to see if it has spread further.  If they deemed the August scan as not neccesary, I'm sure they will try and do the same with the two recent ones.

Obviously, the doctors need to prove the neccesity and write to the companies, but I wanted to know what others have done in situations like this.  

Please share any advice/experience.

Thank you.

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randallgford's picture
Replies 2
Last reply 5/13/2013 - 6:58am
Replies by: randallgford, NYKaren

My husband had 15 days of WBR and after a week had 3 SRS treatments for 2 lesions

near spine/lower back. He lost alot of weight. He also just completed 4 weeks of Zelboraf

and his blood work has improved dramatically and he had a node sticking out on his neck that

disappeared. He has tumors on lungs, liver, and abdomen- the doc wants to wait til 8 weeks

on Zel so he will be scanned again in 4 weeks.

They have just started weaning him off steriods- he was doing 3 a day, now 2 a day for

a week, then 1 a day, then 1 every other day then off. The Doc said it is a difficult

weaning process, fatigue and dizziness, possibly headaches. But he is more fatigued than

he even was during/after the WBR. He can hardly stand up, but he is not in pain.

Can the steroid withdrawal really do this? He sleeps constantly and is so weak. Any similar experiences?

. He has been on the steroids about 2 1/2 mos. Thanks, Vicki

Never give up!

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Anonymous's picture
Replies 6
Last reply 5/13/2013 - 12:37pm
Replies by: kylez, POW, washoegal

Hello everyone,

I am a "newbie"to this site. I am still learning how to use the site so forgive me if I make any mistakes. 

I think that you are so wonderful to help each other & share experiences. I am lucky that I found you and I need your help.

I am a stage 4 patient. After doing IPI, I was cancer free for over 12 months.

This week I had scans and I got devastating news. I have a "5" mm lesion of the posterior left frontal subcortical white matter. This is my first brain met and I have NO tumors anywhere else. I am very scared. Getting a brain met was my worse fear in life.

I just moved to  Southern California. I am considering crainotomy  and Novalis SRS ( not Cyberknife or Gamma Knife)

I would sincerely appreciate  any input and experience you have with Novalis SRS & crainotomy.My main concern are these 4 areas:

1.  SIDE EFFECTS- Comparing SRS & Crainotomy:  How has your experience (side effects) with SRS or Crainotomy effected your health that you still are having problems dealing with long term side effects? What is your experience with side effects

2.  STERIODS & ANTI-SEIZURE MEDS-I have read past  MPIP posts using the search function that because of side effects of SRS & Crainotomy that you have to take steriods & anti-seizure medicine. Is that true? For both the SRS & Crainotomy are steriods & anti-seizure medicine necessary? What is your experience with steriods & anti-seizure medicine.

3.  MORE THAN 1 BRAIN MET-I have heard that if you have 1 brain met, you will probably get more because more  microscope cells are highly likely in the brain. Has anyone just had 1 brain met and for how long ago was that???

4. RECOMMENDATION for a Radiation Oncologists or Neurosurgeons in SOUTHERN CALIFORNIA area that you had a good experience/outcome with and what the MEDICAL FACILITY? If you had a bad experience, I would also find that valuable information too.

Thank you so much for taking the time to read my post & to reply. I am sorry that my post so long but I have lots of anxiety over my brain met and lots of questions.


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JoWen's picture
Replies 7
Last reply 5/14/2013 - 8:51am

Hello....I am new to the bulletin board and have been reading through posted topics, not knowing exactly where or how to begin, Knowing that much detailed information is needed, I hope I have included all that's important.  We are at a point of not knowing which of the options given are the right to choose....any info would be greatly appreciated.

 Approximately 6 weeks ago, my fiance (age 63) had a "mole" removed from his neck, just above the shoulder line.  Phone call from PMD came and stated it was "malignant melanoma" Seen by general surgeon the following week and his affect just didn't sit well with me and immediately know a second option was going to be obtained.  Upon receiving the path report it stated the following:  Malignant Melanoma, Nodular, 2.5mm in thickness extending to the base of the biopsy with a separate portion of tissue showing a mm thick portion of melanoma.  Greater than 10 mitosis per millimeter squared. mm of ulceration. Melanoma seen in vascular spaces.  Clark level IV (deeper invasion cannot be excluded)  No perineural invasion.  Tumor infiltrating lymphocytes - non brisk.  cautery effect. incompletely excised.

Consulted with a melanoma surgical oncologist at the James Cancer-Research Institute @ OSU and surgery was scheduled two weeks later for a wide excision and sentinel node biopsy.  Day of the surgery, lymph node mapping performed and 2 sentinel nodes were removed.  Of the two, one showed metastatic malignant melanoma.  Of the five supraclavicular nodes, none showed evidence.  The path report also states that the largest focus of metastatic malignant melanoma measures approx 3mm in greatest dimension for the positive sentinel node.  Lesional cells are present in the lymph node parenchyma and capsular sinus.  No extracapsular extension is identified.   An incidental predominantly intradermal melanocytic nevus is present in the excised site. The positive node stained positive for Melan-A, HMB-45 and Tyrosinase.

The surgical oncologist set up an appointment with a medical oncologist for evaluation of systemic therapy options this Tuesday.  She gave two options...the first was completion of node dissection vs. MSLT2 participation.  She stated that a full body ct would be scan is not done because she said these are microscopic cells and would not be picked up.  She also mentioned that with treatment option 1, the node dissection, the pharmacological treatment is interferon, which is not her choice because of the severe side effects.

We are trying to process and fully understand what lies ahead and what is the right decision moving forward.  I sincerely appreciate any information based on the results above.  

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Sandy11's picture
Replies 7
Last reply 5/14/2013 - 3:32pm

Any recent experience with Chemo?  My husband completed IPI treatments in December.  IPI was awesome against the lung mets, but hasn't touched other tumors.  He also is among the not so lucky 2% that came away with Adrenal gland issues.  (Currently controlled with hydrocortisone)  He is not symptomatic and no mets in vital organs... that's the good news and he's still positive and fighting the fight.  He ws negative for the BRAF gene, so the doc says the next treatment option would be chemo.  We know that doesn't have the best track record against melanoma, but anyone have experience to share?  Nothing happening right now as my husband is feeling pretty well and plans on enjoying the summer. 

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I don't visit up here much...hanging out mostly in Bad Ass Melanoma Group on Facebook...I talked to just before her mega incident and wondering how she is doing now...Lynn

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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Thandster's picture
Replies 3
Last reply 5/13/2013 - 1:07am
Replies by: JerryfromFauq, washoegal, Anonymous

Curcumin, coq10 ubiquinol, and IP-6. Any dosage recomendations are appreciated.

(1 Peter 5:7 NLT). Give all your worries and cares to God, for he cares about you

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abrowell's picture
Replies 4
Last reply 5/13/2013 - 9:28pm
Replies by: AllyNTAus, KnowThyself, Anonymous, Linny

hi all.  i am new to these boards as a user but have been reading them for the last few weeks--so helpful.  my husband had a mole removed from his bicep in march, was diagnosed with melanoma in early april.  the tumor was .8, with no ulceration and to trace of mytotic rate.  we were told the standard of care is to breathe a sigh of relief and do nothing. he's 45 with three kids (13, 12, 10).  it didn't like not knowing if the cancer had already spread, even though he was such a low risk for spread (something like 96% chance it had not spread).  i researched and found that at 40 years old and .75+ depth, SNB was starting to be recommended.  so we pushed and got it done.  unfortunately, two of four lymph nodes removed were cancerous (i don't know the details yet...macro/micro, etc.).  he just had a petscan on friday and will have lymphandectomy (sp?) on tuesday.  so this weekend and the last week has been awful and we are hoping for some good news.  i think he is stage iiia and we are hoping to stay there.

so here are several questions.  1) has anyone had such a "small" tumor that has spread to lymph nodes?  2) he feels perfectly fine, perfectly healthy, besides the surgical spots.  i'm guessing that from reading here that that means nothing and we'll find out soon enough whether it has spread to organs and other lymph nodes?  3) we are at stanford, and i feel very good about his surgeon.  he has only recommended petscan...should one get other scans or is this fine for now?  4) i know for the oncology portion that cal pacific and ucsf are highly recommended; has anyone stayed at stanford for the melanoma oncology (dr. reddy)?  5) finally, a good friend whose husband died of liver cancer recommended a doctor who runs a company called "good medicine."  you meet with this group (multiple doctors, nurses and researchers), they review all your records, and they can help recommend where you might be treated, with whom, etc, based on your needs as a family and the doctors' expertise, your stage, etc.  they are not specific to cancer or melanoma.  has anyone used a group like this? 

thank you for any thoughts you have.

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BrianP's picture
Replies 1
Last reply 5/11/2013 - 12:17am
Replies by: JerryfromFauq

I never get tired of reading optomistic articles.  I love the sentence about one day melanoma being a chronic treatable disease.


NewsApril 30, 2013

Therapeutic Combos Make Inroads in Advanced Melanoma

IMNG Medical Media, 2013 Apr 30, B Jancin



WAILEA, HAWAII (IMNG) – “The past 2 years have been a really exciting time for those of us who have spent the last several decades” in the field of melanoma, said Dr. Allan C. Halpern, chief of the dermatology service at Memorial Sloan Kettering Cancer Center, New York.

“We are in a whole new place with a very promising future for turning stage IV melanoma into maybe a chronic disease for many patients, instead of a death sentence. For some patients, we’re already seeing what may be cures,” he said at the Hawaii Dermatology Seminar sponsored by the Global Academy for Medical Education/Skin Disease Education Foundation.

The greatest enthusiasm in the field now involves combining a pathway-targeted agent, such as vemurafenib, with an immunologic checkpoint blocker, such as ipilimumab. The vemurafenib knocks down 60%-70% of metastatic melanomas temporarily and the ipilimumab promotes durable responses.

But there’s a formidable economic obstacle to this approach: The strongest drug combinations often put big pharmaceutical companies in the uncomfortable position of having to cooperate with their competitors in expensive research projects. “A lot of the drug companies, to their credit, are finding ways to make it work,” Dr. Halpern said.

Dr. Halpern detailed the therapeutic history that has revolutionized the treatment of metastatic melanoma.

Prior to 2011 there were only two Food and Drug Administration–approved therapies for metastatic melanoma, dacarbazine and high-dose interleukin II. Both were unimpressive. The therapeutic dry spell has ended, he said. “There are for the first time in melanoma, instead of no hopeful drugs, a slew of hopeful drugs.”

Targeted therapeutic approaches, the result of laboratory insights into the molecular pathways to melanoma and the key genetic mutations involved, led to the development of vemurafenib, a selective, first-in-class BRAF inhibitor approved in 2011.

“Vemurafenib is an astounding drug. When you give it to a BRAF-mutated cell, it essentially turns off the cell’s metabolic activity.” When given to patients whose tumors test positive for the BRAF mutation, “it’s dramatically effective in 60%-70%.” But the response does not persist. “After about 6-18 months, the tumor develops resistance to the drug. It’s like somebody hit a switch to turn the tumor back on. The tumor comes roaring back, in the same places for the most part,” Dr. Halpern said.

As a result of this limited success, ongoing clinical trials are aimed at determining whether dual pathway blockade using combination therapy will provide more durable responses. Trials are underway with the oral BRAF inhibitor dabrafenib plus the oral MEK 1/2 pathway inhibitor trametinib. Other dual pathway combinations are also under study in melanoma.

The prospects are even more promising, according to Dr. Halpern, for immunologic checkpoint blockade, which is based upon the concept that some cancers progress because the immune system turns off prematurely and stops battling the malignancy. Ipilimumab is one such agent. An anti-CTLA-4 antibody, ipilimumab enhances T-cell activation and proliferation and has earned FDA approval as single-agent therapy in advanced melanoma.

Tumors often don’t begin to shrink until after 3-4 months, but the response is impressively durable in the roughly 30% of patients who respond to immunologic checkpoint blockade.

“These people look like they might be cured,” said Dr. Halpern.

Another important immunologic checkpoint molecule is PD-1. The anti-PD-1 agent known as MDX-1106 appears to be nearly as effective as ipilimumab, but with less toxicity. The early impression from ongoing clinical trials is that dual immunologic checkpoint blockade using anti-CTLA-4 therapy along with an anti-PD-1 drug provides synergistic anti-tumor activity.

Dr. Halpern reported serving as a consultant to Canfield Scientific, DermTech, SciBase, Quintiles, and Lucid.

SDEF and this news organization are owned by the same parent company. 

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Anonymous's picture
Replies 3
Last reply 5/13/2013 - 10:05am
Replies by: mellie, Anonymous, JerryfromFauq

To whoever may be open to this sort of thing: 


This will be my next step if excision doesn't take care of mine, or if it recurs....


I'm sure laws vary by state and country, so don't get yourselves into trouble trying to make it yourself, but do some research, I'm sure there are plenty of places that sell it pre-manufactured...


Worth a shot!

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