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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Doug-Pepper's picture
Replies 3
Last reply 10/1/2012 - 1:40pm
Replies by: Doug-Pepper, Mandi0280

We went for Doug's routine appointment with his oncologist for blood work & chest x-ray last Tuesday. A small spot showed up on his left lung, so he was scheduled for a PET scan on Thursday. We were very anxious as you all know. We were to go in Monday morning for the results. His wonderful Dr. called Friday afternoon with clear scan results. So thankful. Next month will be 2 years Ned. My heart breaks for so many on here. I also know that we have to share any good news to give hope to others. Still juicing in the morning & trying to avoid processed food & taking lots of supplements. Prayers going up for others facing this disease... Pepper.

"God is our refuge & strength, an ever-present help in trouble." Psalm 46:1

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JerryfromFauq's picture
Replies 3
Last reply 10/1/2012 - 6:16am

Received my Lab Corp CBC results from the 14th.   
WBC  was 3.6 vs the 2.57 on the 8th (Ref: 4.0-10.5).
RBC         3.11 vs the 1.99 on the 8th (ref: 4.14-5.8)
HGB         10.6 vs the 7.5 on the 8th (ref: 12.6-17.7)
Not great, but much better than I started the month! 

Supposed to get another CBC done this week.  Feel like the counts should be about the same. 

Hopefully I can start back on the Gleevec.

The past month is the first time that the WBC has dropped below the normal range.  The RBC has ran between 3.13 and 3.6 for the last two years on the Gleevec.

The HGB has ran in the 10.s for the last two years (7.5 is  the point they do transfusions).

I'm me, not a statistic. Praying to not be one for years yet.

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sjl's picture
Replies 5
Last reply 10/1/2012 - 2:03am

My husband had his 3rd round of carbo/taxol for his stage 3 mucosal melanoma today.  Before the treatment, they did a scan and his tumors have shrunk 75% plus a second primary lung cancer is shrinking before they got to the radiation they are going to do!  The doctor is very happy and said that sometimes, with mucosal, they can get a durable response with chemo.  Anybody here have mucosal?  I'd like to hear of your expeeriences.  He will have at least two more rounds of chemo and another scan in 6 weeks to see how things are.  So many people are praying for him and our prayers are being answered.

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swissfarm7's picture
Replies 18
Last reply 9/30/2012 - 9:22pm
Replies by: _Paul_, Mickey n Jo, swissfarm7, Anonymous, Tim--MRF, mel123, POW, audgator

Hi, all!  Two months into my husband's journey with melanoma, I could use some contact with others on the same path.  This past summer was quite the roller coaster.  In June, we traveled with our five boys to Europe, spending most of our time in Hans's native Switzerland.  No sooner did we return home than Hans received a cancer diagnosis.  From the Swiss Alps one week to the Seattle Cancer Care Alliance the next ~ talk about a rough landing! ;-) 

Hans had a wide local excision and sentinel lymph node biopsy in late July.  Melanoma was present in one of two nodes, and the following month he had a lymph node dissection.  He recovered well and none of the nodes showed further evidence of melanoma.  Hans isn't a details kinda guy while I'm a Type A researcher, preparing to write a doctoral thesis (or so it seems!) on a subject I never wanted to know about.  He took the results to mean he'd "beat" cancer.  If only!  Talking with the medical oncologist the other day brought him face to face with the reality that he's Stage IIIB (T4bN1aM0 to be specific). 

So.  Now what?  The question anyone in this situation faces.  Hans of course has to follow a surveillance regimen, with regular dermatological visits and CT scans.  This is where my first question comes in.  I've read in several places that Stage III patients should have scans every 3-4 months for the first couple of years after diagnosis.  Our oncologist suggests every 6 months, staggered with the dermatology appointments, due to the exposure from frequent scans.  (Our surgical oncologist also mentioned that they're doing scans less often now.)  What's your thought on this, and what sort of management plan have you followed?

The oncologist addressed adjuvant therapies, and naturally interferon was mentioned.  He presented the pros and cons and stressed that there's no right or wrong choice.  We're aware that the potential benefits aren't quantifiable, and that the treatment, while tolerated differently by different people, can have a profound effect on one's lifestyle.  We're really outdoor-oriented, athletic people; more significantly, we own and operate an organic dairy farm.  Needless to say, a year of suppressed activity would be challenging for Hans ~ and the rest of us.  His kneejerk reaction was, "No way!".  And I totally get that.  But as a guy in the prime of life (he's 45) with five children, the youngest of whom is 7 years old, something that potentially delays the progression of an aggressive, insidious disease may be better than nothing, kwim?  So, much as I worry, reading about the toxicity of interferon; much as I hate the thought of how it may affect him (and us); and much as I hate that we'll never know if it did any good anyway ~ I'm leaning toward it.  As for Hans, I think he just plain doesn't know what to do.  Really, how on earth does one make this decision?!

There is a clinical trial comparing interferon to ipi that Hans may be eligible for ~ although he wouldn't know going in, of course, which drug he'd receive.  While some aspects of the trial would be free, others would not, and our insurance won't cover research trials.  As it is, our insurer has actually denied coverage for all the treatment Hans has received thus far.  A long and ridiculous story, but suffice it to say I'm in an ongoing effort to appeal their decision.   Only mentioning it in the context of the trial and our need to consider financial aspects. 

Good grief, this become quite the novel.  Thanks to those who have read this far, and to anyone who can offer words of encouragement or advice.  I'm so weary of hearing well-meaning but uninformed people exclaim, "At least it's only skin cancer!".  Sigh.

Cheers,

Colleen

Keep on keeping on.

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DanielM's picture
Replies 14
Last reply 9/30/2012 - 2:59pm
Replies by: _Paul_, MikeWI, washoegal, Janner, lunchlady, Anonymous, Gene_S, DanielM

            

               On August 03 the melanoma was removed of my skin (back). Based on the pathologist report, on August 10, the oncologist determined that it was on stage two, almost three. He suggested treatment like stage 3 with interferon. I will look for a second opinion in Houston, Tx( MD Anderson). But I am really scared of the secondary effects of the medicines available: interferon,http://skincancer.about.com/od/livingwithskincancer/a/interferon-side-effects.htm, Yervoy, Zelboraf, etc.

There are so many organic effects, including brain damages (of short duration...suppose). Actually, besides this cancer problem my overall health is good. I have metabolic syndrome (Diabetes, HBP, and triglycerides and cholesterol problems), but all those issues are in control with the parameters in good range. I made extensive research for these problems and together with my doctor with medicine, exercise and supplements I am in good health condition. Otherwise, these medicines for melanoma are a nightmare for anybody. The oncologist told us about that the interferon may provoque sucidal issues, and I researched that also affects your reasoning skills.

What I love more for my daily life and my work, as Mathematics teacher, is my capacity to teach Math to my students and teach them decision taking skills. I need to collect the most information available to deal with this new huge problem in my life,

Thanks and never give up to your life,smileyyes

DanielM

Do not give up never-try to be the best in what you do forever.

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kpcollins31's picture
Replies 1
Last reply 9/30/2012 - 8:35am
Replies by: triciad

Reached stage IIIC a couple weeks ago after a lump in my arm turned out to be a lymph node swollen by melanoma. Surgery yesterday to remove the cancerous lymph node in my left arm and to perform another sentinal lymph node biopsy. Arm is sore as would be expected. The mapping process this time around seemed much more thorough to me - nice work by the folks at Wake Forest Baptist Health Center. They very clearly identified 4 lymph nodes. The locations were surprising to me since they were in my upper arm (between my armpit and elbow). My first SNLB over a year ago took some lymph nodes below my armpit area which was much further away from the original melanoma site. Interestingly, the cancerous lymph node that was biopsied about 2 weeks ago did not get mapped - they speculated that the biopsy might have damaged the lymph pathway.

Now it is the waiting game again. Pathology results expected in a few days. Hoping that none of the other lymph nodes contain signs of melanoma. If they do, I am just going to ask them to put in a zipper down there :).

Kevin

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POW's picture
Replies 2
Last reply 9/29/2012 - 7:56pm
Replies by: aldakota22, Mickey n Jo

My brother is Stage IV with mets in brain, lungs, adrenal, and intestines. Had WBR in early July and started Zelboraf in late July. He had no problem with side effects. MRI in early September showed old brain mets stable, but 3 new ones appeared. Clearly, Zelboraf wasn't doing what we wanted in the brain. However, we didn't know what was happening in the rest of his body. Was Zelboraf working there?

So he stayed on Zelboraf for 3 more weeks (total 2 months) and got CT scans yesterday. All non-brain tumors shrunk by 50% or more; several small ones gone entirely (including adrenal), and no new ones. That's great! We don't know what's going on with the brain-- did those mets get started in the 4 weeks before he began Zelboraf? Is Zelboraf doing some good in the brain but just not enough? Nobody knows. Zel is too new for anybody to have much experience with it. Trying to schedule gamma knife at Moffitt now. Will continue Zelboraf for 2 more months and then repeat MRI and CT. Overall, very good news. Champagne tonight for all!!

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JerryfromFauq's picture
Replies 2
Last reply 9/29/2012 - 4:02pm
Replies by: JerryfromFauq, jag
 

An Emerging Role for Anti-inflammatory Agents for Chemoprevention.

Source

Division of Gastroenterology Massachusetts General Hospital, Harvard Medical School, 55 Fruit Street, Boston, MA, 02114, USA, achan@partners.org.

Abstract

There have been a number of promising recent developments in the prevention of colorectal cancer. This book examines in detail important aspects of the current status of and future prospects for chemoprevention of colorectal tumors, particularly using anti-inflammatory drugs. Research into the mechanisms that lead from early colorectal adenoma to colorectal cancer is discussed. The role and modes of action of available anti-inflammatory drugs, such as aspirin, celecoxib, and sulindac are described and recent data from trials of aspirin are reviewed. In addition, the possible impact of nutritional agents with anti-inflammatory properties is considered, and strategies applicable in those with a high level of genetic risk are evaluated. An important feature of the book is its interdisciplinary perspective, offering highly relevant information for gastroenterologists, internists, general practitioners, oncologists, colorectal and gastroenterological surgeons, and public health practitioners.

PMID:
22893197
[PubMed - in process]
I'm me, not a statistic. Praying to not be one for years yet.

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Maureen038's picture
Replies 12
Last reply 9/29/2012 - 3:14pm

My husband just found out results of his lung biopsy and his one cm lung nodule is melanoma. He met with a surgeon today. He was stage II in March and now we are dealing with stage IV! I am so scared!! They will remove the nodule very soon, but he will be dropped from the study because the interferon didn't work. We live in the Washington/dc area. My husband is also negative for c-kit and BRAF which really limits our choices. Does anyone have any recommendations? yervoy? Anti pd-1? Supplements? I am desperate to help my husband and keep my sanity at the same time. We are seeing a melanoma specialist at WHC, but we are scheduling a second opinion at Hopkins. Thank you for any help!
Maureen038

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Dhoke3's picture
Replies 7
Last reply 9/29/2012 - 4:28am

Hey all, I recently found out I had melanoma in situ. I was very lucky to see my dermatologist only a month after I noticed the spot and had it removed. I now know though about sun smarts. I dont go out in the sun with out sunscreen... hat... the usual... My question is that I get very frusturated when going to the beach with friends or hanging out with people who just want to "lay out" and "look healthy". I cried the day I realized I had no tan lines on my body because I was so happy,  to me that was what it meant to be healthy, but other people have different points of view. How do you handle being in situations where other people are laying out in the sun and you are hanging out under your umbrella? I often will hear people  saying things like "Oh why are you hiding under there! Come on out and get some color on your skin!" And I want to crawl even farther under that same umbrella. Any advice would be greatly appreciated! Thank you! :) 

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Anonymous's picture
Anonymous
Replies 4
Last reply 9/28/2012 - 11:20am
Replies by: Liz C, Anonymous, Janner

A shave biopsy in early July, reviewed by 2 top dermatopaths and UCSF, indicates likely MIS.  Am trying to figure out how to proceed to get the highest possiblity of cure (most important) while minimizing scar visibility.  

This article from the April 2012 Dermatology Journal is influencing my decision greatly.  http://dermatology.jwatch.org/cgi/content/full/2012/406/

"To clear the melanomas, 6-mm margins were sufficient in 86% of cases, 9-mm margins cleared 98.9%, 1.2 cm cleared 99.4%, 1.5 cm cleared 99.6%, and 100% of lesions were cleared with 3-cm margins. The 9-mm margins were significantly superior to 6-mm margins (P<0.001).

My Mohs surgeon (former 11 yr. chief of derm surg at major medical center) is offering 2-3 mm margins to start with and immediate closure.  The plastic surgeon is offering a WLE with 5 mm to start, closure, and if that is not enough, the next cut is 5 mm further out past the first margin.  

In the article, 6mm margins has proven to be better -- and 9 mm is much better.  So, I'm considering wider margins than have been offered to me.  

It's very tempting to go with the Mohs surgeon -- the slow Mohs approach.   I will only accept path report on stained, permanent slides (with several en face cuts to the tissue so the margins can be examined well).  The path report will be done at UCSF -- where Mohs surgeons are trained. 

In this particular location, on the cheek, I'm unclear about WHEN the value of Mohs surgery starts to drop off (if it does?) and WHEN does WLE start to offer better cure.  Does the Mohs surgical site marking technique still carry much value -- if the best way to handle MIS is to keep expanding the margin until no more abnormal melanocytes are found? 

Thank you very, very much for any clarification you may be able to offer -- or documents to suggest.   

p.s. FYI, separating Mohs surgery from the pathology work (by sending tissue elsewhere) is considered by AETNA to not be Mohs surgery at all. 

  Aetna Note: 2012:  Note: Mohs micrographic surgery requires a single physician to act in 2 integrated, but separate and distinct capacities: surgeon and pathologist.  If either of these responsibilities is delegated to another physician who reports his/her services separately, the use of the Mohs micrographic surgery CPT codes is inappropriate.

 Source:  http://www.aetna.com/cpb/medical/data/300_399/0383.html

 

"A diamond is just a piece of charcoal that handled stress exceptionally well." —Anonymous

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I am hoping to find someone who also has Ocular Melanoma that can help me thru this!

I went to my eye Dr on July 26, 2012 to have him check a "shadow" that had developed in my right eye,

He saw "something" and immediately sent me to a retina specialist who would "see me as soon as I could get there"

Within 5 hours of getting out of bed that morning I had a diagnosis of melanoma..inside my eyeball! 4 days later, I am at the Universityof Cincinnati being scheduled for radiation plaque therapy.

My "official" diagnosis after biopsy and having the raditation implanted for 5 days is "Ciliochoroidal melanoma" that was 16.5mm acrossand 8mm thick. 

I am now legally blind in that eye and have a cataract beginning to cover the lense.  The Dr said the cataract can't be removed for 3-6 months. Has anyone here been thru this? Will my sight ever return?  While I am extremely thankfull that the treatment is working to shrink the tumor, I make my living driving a school bus! Obviously, I can't return to work with only one eye and am afraid I am going to use up all of my sick leave before the cataract can be removed.

Can anyone help me? 

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Kim41's picture
Replies 4
Last reply 9/27/2012 - 10:54pm
Replies by: Kim41, Charlie S

I am not new to this site and I thank all who give such great advice on here. Diagnsosed stage 3a in November 2011. Now I have a small hard nodule I can feel in WLE scar on left thigh directly in the center of the scar. I am to have a biopsy done on Sept. 26th and the dermatologist is going to try and remove it in her office. I also had a biopsy of 2 lymph nodes in my right groin that are slightly enlarged and mildly hypervascular just 2 days ago with FNA. Hoping this is all nothing and I really think it would be soon for me to have a recurrence. My original melanoma was 1.3 which was a shave biopsy so it could have been larger. It was nodular,spitzoid type with vertical growth. I know I am jumping the gun but what would my options for treatment be if it was a recurrence?  I also just had a CT scan for some upper right and left abdomen pain and it shows 2 denisities that are about 1cm each and they think they are hemangiomas but the filling affect of the dye was not normal. Should I push to have something more done to make sure they are not melanoma?  Hopefully this will all turn out to be nothing!!           Kim

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hola's picture
Replies 6
Last reply 9/27/2012 - 7:02pm

My dad was diagnosed in July 2011 (Stage 4), 18 years after the first outbreak !

Metastases in the liver and lung. (4 on the lung and something between 13 and 18 mets on the liver)

After researching, we found out, that zelboraf was approved by the FDA, in Europe it was still only available through clinical trials, doc did not really want to make a second biopsie, which would have been necessary to get into the trial.

I started to fly once every 6 weeks to the US to get Zelboraf there until it got approved in spring 2012 here.

Last CT did not show any liver mets reamining, regarding to the result it is unclear if there are still any mets on the liver at all.

On the lung are 3 left which are greatly reduced up to 70% and way less solid, only one met kept its size (reduced by 10% in the past year)

Condition of my dad is quite good, only sideeffect he has is the sensitive skin (no sun) and sometimes problems with the feet. Age 69 

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laheasley's picture
Replies 1
Last reply 9/27/2012 - 1:20pm
Replies by: hbecker

I found a spot on my side near my left breast/bra line that looked like a blood blister.  This was about a year ago.  I picked at it with tweezers and a lance thinking it would drain and was no big deal.  By the time I was done, I had basically removed the "blood blister" (which by then I knew was not a blood blister, obviously).  Some time went by before I realized that it had grown back - this time larger.  It was 3/4 the size of a pencil eraser.  I wasn't immediately concerned and let it sit on the back burner for a while as life took over.  About a month ago, I finally got around to scheduling an appointment with my dermatologist.  Her first available appointment was last Tuesday, September 18.  On Friday, September 24, I got the results.  Melanoma - 0.42 depth - not the best news, but certainly could have been worse!  I am scheduled to have it removed next Monday, October 1, unless they have a cancellation this week.  I have so many questions and very little information.  First and foremost - how can they know that the depth is 0.42 when the dr. took a shave biopsy.  I have observed two spots (my husband calls them "roots") in the remaining tissue/scab area that are dark/black and coincide with the location of the original "blood blister" and the first area where it reappeared.  If there is still melanoma remaining, is there any way to find out the actual true depth of the original melanoma?  Does it matter?  Does that make a difference in treatment?  Next question:  My dermatologist told me that she would excise a 1 cm area around the melanoma.  Is that 1 cm radius from the central point or from the edge or 1 cm total width?  I'm wondering how big the incision will be and what to expect as far as recovery/scarring.  Third question:  What are the chances that they will find more melanoma under the surface that was not removed by the initial shave biopsy.  I spoke with the nurse today and she said that the normal shave/scraping removes the tumor and the excision is just to be sure that there is no further growth.  This seems questionable to me though because I can still see those two dark spots I mentioned already - the "roots".  Fourth question:  How likely is it that a second (or third or fourth) surgery will be performed to remove additional tissue.  Both my brother and a friend had to return for additional/second surgeries.  When I spoke to the nurse, she seemed to believe that a second procedure would be very unlikely.  Now I'm uncertain what to expect.  Question five:  Will the first surgery involve removal and testing of lymph nodes based upon the 0.42 reported depth or is that unlikely?  Six:  How is the pain?  Is ibuprofen/acetominophen effective at managing it or would it be a good idea to ask for something stronger than OTC?  Seventh and final question:  I bruise terribly and make really unattractive scars.  Would that have anything to do with the melanoma or are the two unrelated?  I have worried for some time about the bruising especially.  I will wake up with multiple bruises with no idea where they came from.  It just makes me think something more could be going on here.  Well, ladies and gentlemen, thank you so much for reading this long laundry list of questions and for any advice you can share.  I felt confident that everything was fine when she first told me my diagnosis, but over the weekend, I have started to feel very uneasy ... I can't explain it.  I just have a bad feeling about all this.  Any advice for me??

P.S.  My brother has had a serious melanoma removed with no further treatment required.  My uncle died from melanoma.   My mom thinks that my dad has had a few melanomas removed from his ears but she is not certain if they were melanomas or squamous cell carcinoma.  Pretty strong family history ... :(

The child is in me still . . . and sometimes not so still. (The World of Mr. Rogers)

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