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.

Expand/ Collapse Topic
 
Replies By
View Topic

Good afternoon, everyone.

Mary Mendoza at MRF encouraged me to post our studies on this page.

We are again fielding a study for which we are hoping to interview 25 people who have been diagnosed, and are currently treating advanced Melanoma (stage 3 III or IV)

These one-hour interviews will take place at your convenience, at any time during the next three or four weeks.  We are pleased to offer to you an honorarium of $100, as a thank-you for taking part in the interview.  I promise that this is not a sales presentation, of any sort--strictly opinion research.

If you would like to participate, please call me, as soon as possible, so that we can set up an interview with you.  My direct number is 212.289.0087, or you can send an email, if you prefer, at pfcresearch@verizon.net.

Thank you, and warm regards,

David Leonard

Director of Research

PFC Opinion Research

New York, NY

Login or register to post replies.

baesill's picture
Replies 3
Last reply 4/19/2017 - 10:03pm
Replies by: baesill, miaka618, Scooby123

I am a 33 year old woman with stage 4. I just started ipi plus nivo a week ago. What side effects suggest pituitary issues? Is there anything specific I should look out for? Is it possible to catch damage to the pituitary early and avoid loss of function?

Login or register to post replies.

Julie in SoCal's picture
Replies 13
Last reply 4/20/2017 - 4:45pm

I'm not sure how I created the anon post below, but it was not intended.  Sigh...

Greetings Friends!

I have some good news and some bad news.  First the good news!  WE HAVE KICKED MEL TO THE CURB!!!! I have completely responded to the Keytruda  and am currently No Evidence of Recurrent Disease (NERD) for Melanoma.  But wait, there's more.  Also I move from Stage 4 back down to Stage 3c.  This is awesome and worthy of a celebratory happy dance, but unfortunately it's uniquely connected to the bad news.

Last Thurs I had a biopsy of the mystery meat in my left lung and it came back as adenocarcinoma, non-small cell lung cancer, not melanoma. So the plan is to have surgery to remove the lung lobe with the tumor "Larry" in it and some lymph nodes  If the cancer has not spread to my lymph nodes, then surgery should be all that I need.  If it has spread, then I'll need more treatment, but I'm getting ahead of myself. I'll deal with that only if need be.

Right now this is all I know.  The hospital is organizing all that is needed for surgery, but it's not an emergency.  I'll let you know.

So this is the news.  Thanks again friends for walking with me in this.

Shalom,

Julie

Stage 4  (TXN2cM1b)-- 2008 WLE, SNB, LND, HD-INF, GM-CSF, (intransits) 2013 IPI, (intransits) 2014 PEMBRO, (intransits and lung met) 2016 VATs

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 1
Last reply 4/18/2017 - 5:18pm
Replies by: MikeW

Greetings Friends!

I have some good news and some bad news.  First the good news!  WE HAVE KICKED MEL TO THE CURB!!!! I have completely responded to the Keytruda  and am currently No Evidence of Recurrent Disease (NERD) for Melanoma.  But wait, there's more.  Also I move from Stage 4 back down to Stage 3c.  This is awesome and worthy of a celebratory happy dance, but unfortunately it's uniquely connected to the bad news.

Last Thurs I had a biopsy of the mystery meat in my left lung and it came back as adenocarcinoma, non-small cell lung cancer, not melanoma. So the plan is to have surgery to remove the lung lobe with the tumor "Larry" in it and some lymph nodes  If the cancer has not spread to my lymph nodes, then surgery should be all that I need.  If it has spread, then I'll need more treatment, but I'm getting ahead of myself. I'll deal with that only if need be.

Right now this is all I know.  The hospital is organizing all that is needed for surgery, but it's not an emergency.  I'll let you know.

So this is the news.  Thanks again friends for walking with me in this.

Shalom, 

Julie

Stage 4  (TXN2cM1b)-- 2008 WLE, SNB, LND, HD-INF, GM-CSF, (intransits) 2013 IPI, (intransits) 2014 PEMBRO, (intransits and lung met) 2016 VATs

Login or register to post replies.

Janner's picture
Replies 13
Last reply 5/1/2017 - 1:40pm

Hi everyone!

Just posting a little positive news here.  It's often easy when reading this site to think every early stage person progresses.  What we don't see is those that move on and have no reason to post.  It's the 25 year anniversary since my first melanoma primary was removed in 1992.  Seems like a world ago.  No internet, no information, no support system back then.  I didn't know a single person who had had melanoma.  Even the medical library at my local university had only gloom and doom information.  What a difference to today.  This is amazing website of people and information - we are all so much better informed today.

For me, the 1st primary wasn't my only encounter with melanoma.  I had two more primaries 8 and 9 years later.  But nothing since 2001.  My adoptive parents have both have melanoma - it is what took my Dad.  And my birth Mom and half-sister have both had melanoma.  I can't seem to escape it nowadays.  It has also brought me some amazing friends from this website from way back.  (I've been on this site since 2001).  I'm just so thankful we have the support and resources and information available to us today that was sadly lacking 25 years ago!  And treatments!  The world is an entirely different place in regards to treatments for melanoma. 

Carry on, I wish everyone well, and remember despite how it appears here, MOST early stagers do NOT progress!

Janner

http://www.MelanomaResources.info

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 13
Last reply 4/19/2017 - 3:24pm

I'm not sure if this is an appropriate post for this forum. If not, then I apologize in advance.

After browsing the internet, I came to the conclusion that this board has the most knowledgeable people concerning melanoma.

 

Many months ago, I noticed a spot on my lower leg that is slightly above my ankle. I wouldn't call it a mole, but it is a somewhat lage, very irregularly shaped spot with an uneven border. I honestly couldn't tell you how long the spot has been there, but I can say with 99% confidence that it has been very near to the same size (if not the exact same) for at the very least half a year and possibly extending years into the past.

I do not, however, believe that this is a birth mark but I really don't know. Recently, I became very paranoid at the thought that I could have skin cancer.

I am in my 20s at a university so I went to the healthcare center where I saw a doctor. He simply looked at the spot and said the only cancer that would be located there would be malignant melanoma. He looked at it for a bit and said that it looks "nothing like" that and that was basically the end of the appointment within literally a few minutes.

The doctor was not a dermatologist, but was/(is?) board ceritified for oncology. 

I have two questions.

1. What is the likelihood that the doctor was wrong and it is melanoma? 

The more I read about melanoma on the internet, the more paranoid I get. I was hoping that he would refer me to a dermatologist who would biopsy the spot but am actually more concerned that he didn't do this at all.

2. What action should I take (if any)?

I told my mom about my want to see a dermatologist, but I don't think I will be able to get an appointment for many months.

Thank you for your time

Login or register to post replies.

DocPain's picture
Replies 11
Last reply 4/18/2017 - 8:53am

I know that everyone responds differently to opdivo/yervoy, but how long did the side effects last for you? I would think less than three weeks given the first nfusion cycle, but that's a bit unnerving to think 12+ weeks of constant side effects for four rounds. Did the side effects abate any when you went single agent?

Doc Pain

Login or register to post replies.

matthew111's picture
Replies 4
Last reply 4/27/2017 - 12:57pm
Replies by: jennunicorn, matthew111, Anonymous

I am 26 and had a mole check about  in june 2015 and the derm looked at the moles with a dermatoscope and said they were all fine, since then they have not grown larger, but I recently had a appt with a new derm to look at a mole on my arm that was hurting when I went out in the sun and who who did a mole check and and wanted to remove 2 different small, flat moles, but wanted me to come back and do it at another appt. and didn't want to remove the one on my arm that was bothering me. He also only looked at them with a magnifiying glass and not a dermatoscope. I am wondering if he just wants to remove them to make money. They also asked me if I had a family history of melanoma and I said I thought my dad had it, but it turns out he didn't. Part of the problem is one of the moles they want to remove is on my ankle, above the sural nerve which is just half a millimeter below the skin. I know this because I had orthopedic ankle surgery before. They also told me a nurse would give the numbing shot not the doctor, I am very nervous that the needle will hit the nerve and give me nerve damage.

The moles they want to remove dont even look suspicious apart from being dark, one on ankle is 2mm tall 2.5mm wide, one one back is  5mm tall by 4mm wide and the one on my arm that actually bothers me is 8mm in all directions. They are all mostly flat. I get alot of anxiety from going to the doctor becasue I was harmed by a negligent doctor before  and will be sick with worry and insomnia at the thought of getting them removed especially the one on my ankle and the though of nerve damage, espically because I already have pain walking due to joint problems.

I will upload pics of moles

ankle http://imgur.com/ajgO3oV

back http://imgur.com/z8t2bXF

arm http://imgur.com/TxJhJu0

I have a couple questions

1. I know melanoma can affect people of any age, but dosen't it affect mostly older people?

2. Does nodular melanoma mean the mole is raised?

3. If a mole is near a nerve should I go to a derm or plastic surgeon to have it removed?

4. Do you think my moles (especially ankle) are suspicious?

5. Do you think the new derm wants to remove the for money only?

Login or register to post replies.

AVeryHopelessPerson's picture
Replies 2
Last reply 4/18/2017 - 11:09am
Replies by: Hukill, Anonymous

So I had my boyfriend get a melanoma specialist that he sees twice a week (or so) and looks at his test results. (He gets X-rays) he started on Immunotherapy and will get another dose in a week and Will be X-rayed the day after the immunotherapy. As far as we both know, the cancer hasn't spread yet but it didn't change size. (It didn't get smaller) I believe he had some lymph nodes removed when he got surgery (around the end of February) he has been in the hospital since the end of February. However my hope is slowly decaying because I keep getting thoughts about him dying. I can't stop crying while we both don't talk. I'm very afraid about what will happen next because there's no cure to melanoma and I read so many patient stories about it. 

Login or register to post replies.

Replies by: Mat

With all of the advances in immunotherapy (which is amazing!) I'm wondering why there aren't tests to prove a systemic response to immunotherapy.

i wouldn't want to injected dead melanoma (if that is even possible). But it seems like there would be a test of some sort to show that our immune system is attacking melanoma cells or is not attacking them. For unresectable patients the evidence is obvious but for us resected patients it would be nice to definitively know if we are durable responders.

Diagnosed Jan 2017 (unknown primary). Surgery Feb 2017 (Speech impediment resulted from ad-hoc submandibular gland removal during CLND). Ipi started Mar 2017 - ended May 2017 (Hypophysitis)

Login or register to post replies.

Bobman's picture
Replies 4
Last reply 4/16/2017 - 10:28pm

And the waters  are filled with shark's  to quickly  rubber  stamp  a big "No".

Since my last post , I  have  been  navigating  the system  to get to UCSF, and to their  credit ,  the university  has been helping  me quite  a bit . They now have all the needed pathology , scans, and referrals  on me , and have been working  hard to help me get there .  I was supposed  to be there this Tuesday , the 18th. But after my insurance  denied  my appeal  to the original  denial,   my appointment  has been canceled .  I'm   still arguing  my case with the medical  director  who denied  me coverage .  His reasoning  was "You have an oncologist , and dermatologist  here."

Of course  no one here is a melanoma  specialist , and I've  been around  this board long enough  now to know what I   need, not to mention  no one here knows  what to do with me at this point. So, UCSF has rescheduled  me for May 9th. They're  still  hoping  it gets resolved  by then,  as do I  . But even if  I  get denied  yet again , I  am  making the trip. My thinking  is get my foot in the door asap,and get eyes  on me that will know what to do .  I refuse  to let some shirt who doesn't  know anything about me,  and is trying pinch pennies  stop me from getting  where I need  to go. 

I swear , navigating  the system  is as frustrating  as the disease  sometimes .

Open to any suggestions  how to push this along ,but come hell or high water, I'll be at UCSF  on May 9th.

 

Aloha  to all in fight ! 

Bob

We are one.

Login or register to post replies.

WithinMySkin's picture
Replies 7
Last reply 4/19/2017 - 3:30pm

Hi fellow warriors!

This Easter, while being with friends and family, I began thinking of this family. I hope all the classic voices are hanging tough, and a “howdy-do” to the new names here. I pop in every once in a while to read, but I haven’t been posting. But today, I really wanted to reach out to everyone.

Last week was my 2 year anniversary of my diagnosis – stage 3B. Many of you will remember my battle as I progressed to 3C with in-transits and a CLND of my left groin. 8/30 nodes positive, one “grossly positive with extracapsular extension”. I changed my diet, my lifestyle, moved cross country for treatment, and was still progressing. I tried Interferon and still had another in-transit. And then I went on the Ipi/nivo combo, which created severe side effects and I had to stop after only 2 infusions. I haven’t had any other treatment since.

BUT IT WORKED! My last scans few scans have come back squeaky clean and I’ve been bumped to 6 month checkups. I’ve never been so happy to be ignored!

I know everyone on here is battling – for themselves or for a loved one. And I urge you to keep up that battle. Easter is a symbol of spring, of life, of rejuvenation. Of rising up and rising above. Believe in yourself and rise above this awful disease.

Every side effect I had and every lifestyle change I made was worth every moment I have outside of the hospital now. I cannot encourage you all enough to do what is best for YOU. Find a doctor you trust. Forge your own path. This is your journey, no one else has to walk in your shoes. Heck, I quit my job and moved cross country to see a doctor I trust. My parents were furious. But looking back, it saved my life.

This is an amazing family. You guys saw me through some tough times. And I want to thank you from the bottom of melanoma-free heart. And to all of those people still battling – KEEP FIGHTING!!! We’re all here for you. So lots of internet hugs to everyone today!! If you ever want a pen pal, or to vent about melanoma, or just want to check in, you can reach me on my blog -- www.withinmyskin.com

Lauren

WithinMySkin

www.Withinmyskin.com

 

Login or register to post replies.

baesill's picture
Replies 6
Last reply 4/19/2017 - 3:39pm

Before my stage 4 diagnosis I was dealing with low grade fevers in the evening. I was told this was rare symptom of metastatic melanoma. I have two small mets on my liver and normal liver numbers and normal LDH. I also have a cluster of nodules in one lung and several enlarge do lymph nodes in my chest.

I am desperate for other stories involving fever as a symptom, but also as a side effect of ipi plus nivo (my current treatment).

Are fevers always a bad sign?

Login or register to post replies.

Henry 1990's picture
Replies 11
Last reply 4/18/2017 - 8:50am

Photos of the current situation are below, as well as what has happened, and most importantly, a few questions. And I have scheduled a digital dermoscopy for 24 April. (As I am writing this, it is April 16.)

In December, 2016, I somewhat scratched my upper stomach and there was something and when took a closer look I found an oval mole that, as it seemed, I had cut in with my finger nails at the lower side as a result of the scratch.

I didn’t think if the mole was there before or not, but later I started to realize that, hey, this mole definitely wasn’t there a few years ago, and maybe even a few months ago. All-in-all, I didn’t suspect anything dangerous at that point.

Then, at the end of February in 2017 or maybe somewhere in March, I somewhat found a dark-brown stripe at the lower side of that oval mole. It kind of was like broken and I was able to remove most of the dark pigment with toothstick and the toothstick tip got covered with dark-brown color too (so it was not  entirely solid). It was at that point when I suspected that it might be something bad but not necessarily and I removed the dark stuff and left it to heal.

As I remember, after a week, I didn’t notice the dark stripe and it was evenly colored but it was little more reddish perhaps. But now, in this month, somewhere in the first week of April, I noticed a new dark spot in that mole at that side.

By looking closer to that new darker spot inside the mole, I notice that it is not oval. At a closer look it appears as irregular shape, almost as scaled shape of x or +.  The diameter of the mole itself is 3mm at the longer axis and 2mm at the shorter axis. Based on touch and light reflections it is not entirely flat (as checked today). It is slightly elevated, particularly at the darker side and not necessarily at the lighter area.

The two pictures below show how it looked the first time I took a picture of the mole on April 10, 2017: 

[img]http://i.imgur.com/UdzbSSi.jpg[/img]

[img]http://i.imgur.com/boVMvWe.jpg[/img]

 

And here another three pictures show how it looks a week later, today, on April 16 (it has gotten little darker, and I’m worried that it has gotten slightly elevated as well):

[img]http://i.imgur.com/oKRXiZv.jpg[/img]

[img]http://i.imgur.com/mglwpNo.jpg[/img]

[img]http://i.imgur.com/eHUMLS8.jpg[/img]

 

I have tried to find similar cases by searching in Google, and I found one case study that seems to be sharing similarities with this one (Case 11, or case K - thickness 0.60 mm):

http://jamanetwork.com/journals/jamadermatology/fullarticle/209659

 

Now, based on what I have said, and in case that it might be fastly growing nodular melanoma, should I wait the 7 days ‘til I get checked by dermatologist who is specialized checking moles with digital dermoscope, etc., or try to get it removed faster by general board certificated local surgeon? (I’m afraid that local surgeon might not see the seriousness of that and not cut it out properly (I live in Tallinn in Estonia and I’m not sure how “punch biopsy” is in translation to Estonian language either), and maybe they’re not going to send it to proper or specialized biopsy or not sending it fast enough – and when it has been cut out that it then cannot be evaluated with digital dermotoscopy as it has been cut out, etc.)

My second question is that, should I go to the hospital where digital dermoscopy is performed and try to get an earlier appintment than on April 24 – which is 7 days from now? (When I went there on past Friday they first offered me appointment in July, and then I expressed that I suspect melanoma and I got appointment for April 24, which is 7 days from now as I am writing this.) Assuming it could be vertically growing melanoma, should I go there and try to get examined faster – and if so, what specifically I should tell?

And my final question, how quickly a fast-growing melanoma, starting from 0.5 mm thickness and about 3 mm in diamater could possibly grow internally in 7 days in a relatively healthy person? 

Could I slow it down by eating more C-vitamin, like a lot of red pepper in addition to war borccoli? I just started to take vitamin D3 as well as in Estonian winter is without sunshine and I haven’t gotten much Vitamin D since the last summer I guess.

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 12
Last reply 4/19/2017 - 9:10am

I have been recently diagnosed with stage 3a melanoma. I had a WLE and SLNB done 3 weeks ago. I had two lymph nodes removed and one came back positive with a very small amount of cancer in it. My oncologist and surgical oncologist both recommend that I have CLND. I don't know what to do? I don't like the idea of cancer possibly being in other lymph nodes but the possible complications of a CLND scare me. I do not want to get lymphedema, and was told I had a 30-40% chance of developing it after surgery. I don't know what to do? I definitely do not want to try Ipi because of the side effects. But, I am not 100% sure that I want to do the CLND. Does anyone have any advice?

Login or register to post replies.

Pages