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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sseuregitong's picture
Replies 7
Last reply 5/1/2016 - 12:33am

Hi everyone,

I was recently diagnosed with a large (10mm) melanoma behind my ear. I'm a 30-year-old male in fairly good health. As far as I know, I have no family history of melanoma except a half-sister who was diagnosed with stage I about 10 years ago and has had no further complications. I live in Korea, where melanoma is extremely rare. I don't speak the language well, so my treatment has been very stressful and often confusing. My test results so far have been good, though.

PET/CT - no evidence of distant metastasis

Ultrasound of lymph nodes - no evidence of metastasis

Wide excision biopsy - no evidence of local metastasis

While I'm of course happy about these results, I have a few concerns about my treatment here.

1) I did not have a sentinel node biopsy. From what I've gathered online, a sentinel node biopsy is standard procedure for Stage IIC, especially for a melanoma as large as mine. I will be asking my oncologist about this when I see him again in a couple days.

2) My dermatologist told me that one year of high dose Interferon Alfa injections is mandatory treatment for Stage IIC in order to prevent recurrences of melanoma. However, when I met with my oncologist, he told me it is optional, and many doctors think the severe side effects outweigh the potential benefits. Further research online suggests that Interferon is not particularly effective in reducing recurrence rates. Is Interferon necessary/worth the risk for treatment of Stage IIC?

Thank you for your help!

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HopefulOne's picture
Replies 4
Last reply 4/27/2016 - 5:18am

My husband has a world-class neurologist and awesome melanoma specialist at Jefferson in Philly. Our oncologist reviewed my hubby's recent MRI results with us and showed us a "white" area that seems to be at C4 and has a hook to C5. She said the neurologist had no idea what it is but didn't think it looked like cancer. I'm baffled that someone of his caliber can't guess at things it could be. They are doing a PET Thursday to see if it lights up. It just keeps bothering me ... Was wondering if anyone else has run across something like this. Thanks. Kimberly

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Bradley75's picture
Replies 10
Last reply 4/27/2016 - 4:16pm

I was diagnosed stage 3b last year.  I have been NED my lymph node dissection last May.  The past few weeks I have been dealing with a headache that just won't go away.  The initial thought was a side-effect of my Leukine.  I have been off shots for 12 days now and still have the headache.  Mayo wants me to have a brain MRI this Thursday.  I am freaking out about it because I have heard many horror stories.  I have read posts on here about them from time to time and that adds to my concern.  Anyone have experiences to share that can help calm me down? 

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Anonymous's picture
Anonymous
Replies 4
Last reply 4/26/2016 - 1:23pm
Replies by: exfakebaker, Janner

Hi!  I am a pre-melanoma person at this point.  I am a redhead/pale skinned person who grew up in the era of everyone using tanning beds (I'm 31).  Used them every spring from March-May or so, then spent the summer with sunscreen on my face/shoulders and not really anywhere else (on weekends).  Usually had a tan until about August, then let it fade out.  This went on from about age 16-30, with a couple springs/summers that I sat out on because of pregnancy or one year when I didn't think tanning was good for me at age 25.  Also remember having sunburns as a child.  However, to my knowledge, there isn't melanoma in my family (other skin cancers though).

I used to see a dermatologist once a year (for 2-3 years) when I was 24-27.  Nothing ever found, but did get the tanning lecture.  I moved to another state and didn't have a dermatologist anymore for 3 years, during which time I also wasn't tanning much (pregnancy).  

Last spring, it occurred to me that I hadn't had myself looked over in awhile.  Also, I had been tanning for about a month when it all just started to seem like a bad idea to me and I had a gut feeling I should do something about it all.  Scheduled an appointment at the Dermatology and Skin Cancer Center of Kansas City with a nurse practitioner and got in to see her.  

At that visit, she looked me over completely and found one mole that she "didn't like" and burnt a spot of "precancer" off my face (a place where I said I get a recurring/scaly zit frequently).  That spot seems to be fine.  The spot on my middle back, the mole she didn't like, turned out to be severly abnormal (not melanoma but they described it as "imminent") and required an excision.  That was quite a scare and totally changed my attitudes on tanning.  I monitor sun exposure now and don't tan, but I fear the damage has already been done.  

When I went in for my excision, I was then seeing a "real doctor", so I asked her to look me over as well.  She described herself as "OCD about moles".  She found four more moles she didn't like, and I pointed out a pinkish spot on my upper back that concerned me.  All 5 were biopsied.  The moles were all atypical but normal, and the pink spot was moderately abnormal, requiring a second excision.  She noted that I have "weird moles all over", but only biopsied four of them.  I really do have lots of moles all over (not like google pictures of 'atypical mole syndrome', but a lot on my back, stomach, and legs.  It would be nearly impossible to biopsy them all.

That was all last October.  I haven't been back to the dermatologist since then, although I do have an appointment coming up with the nurse practictioner again in a week and a half.  I think the upcoming appointment has stirred up my hypochrondria/health anxiety.  I have been checking my skin over, and have found several atypical moles (on my legs) that concern me.  Unfortunately, I wasn't doing self skin checks rigorously since the second excision because I made the mistake of letting myself feel like the worst was behind me for a few months and let it all go for peace of mind.  Anyway, I have found several moles and at least one pink spot on my back.  I am unsure if they've changed much if at all, but I would assume they've all been there for the past few months.

Does anyone else have these spots/atypical moles all over themselves?  What do you do to stay on top of it all?  Am I going to end up looking like a scarred/pincushion because of all the mole removals and excisions (better than cancer, I understand that much)?  Have I already done too much damage and this is my penance?  Just looking for other points of view and stories while I wait for the appointment.  I've been lurking in the forums and everyone seems supportive and very helpful and I wanted to join and get some perspective from people who've had similar experiences as nobody I know in real life does!

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Kimberann0912's picture
Replies 3
Last reply 4/26/2016 - 9:11pm

I was diagnosed in May 2012 with melanoma at 23 years old and 6 months pregnant with my second daughter. I went to what they call a salud clinic which is a half priced clinic in my opinion. The doctor for one, had his nurse Call me to tell me I had melanoma but she knew nothing! I couldn't even talk to the doctor himself! And she called me on a Friday at almost 5 pm! I saw a surgeon that following Monday he never even told me a stage. Saw an oncologist and he didn't explain much of anything. I had a local wide excision as well as sentinel node biopsy done July 2012 and it came back clear. I have just been seeing a dermatologist regularly. Until one day I heard of someone that it reoccurred in after 5 years. Now I'm like what!!! Was I supposed to be getting yearly pet scans and blood work?! Nobody said anything. My original melanoma was a 1.1 mm with a mitosis rate of 1 per 2. I don't even know what stage that would have been!!! Help! 

Kimberly A. Smith 

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Patrisa's picture
Replies 1
Last reply 4/25/2016 - 2:14pm
Replies by: DZnDef

Dear fellow fighters,

 

I just wanted to share with you words from my fathers oncologyst....

Today he had his 3month check up (and his 5th dose of Keytruda) and his largest (5x5cm subcutaneous melanoma) is now smaller than 1cm (it can not bee seen anymore, just felt under skin)...Other smaller ones have completely dissapeared.... She said he has AMAZING results (we just have to wait for CT in May to see how he s doing "on the inside (mets in his lungs).... She said she has never seen such good results in such a short period on Keytruda.....

Now, what i am aiming at is: My father hasn t changed his diet at all (he is diabetic - but doesn t follow hid diet  rigorously). What we did the moment we realized his melanoma has returned, we made him start drinking aronia (chokeberry) juice every day....I have read that it has amazing health benefits, among them also anti cancerous activity and he has been drinking it every day for past 4 months....

Maybe this juice helped him achieve such good results? I really want everyone of you to give it a go, it really can t hurt, because it is really healthy stuff, but we kinda feel it helped him achieve AMAZING (as the doctor put it) results....

Anyway, i just wanted to contribute to this wonderful forum and maybe help in a way.....

Best wishes to all of you....!

 

Patrisa

 

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Hamlet1987's picture
Replies 6
Last reply 4/25/2016 - 5:40am
Replies by: Hamlet1987, Janner, MoiraM

Hi guys

I am looking for some information but was not able to fine it anywhere. 

Hope someone has an idea. 

In October 2015 I noticed a new big mole on my inner right tigh. It was around the size of a pencil eraser and dark brown. 

Didnt worry too much until i read up on skin cancer. Was in Europe in December and had it checked by a dermatologist. He checked it with his tools and said it looks normal. He also shaved it of during the consultation. Now there was a tiny bit of black on it which kind of worried him and he wanted to have it checked in the lab. Since my health insurance does not count in Europe I asked him if it was really necessery. He agreed to shave it of and take another look at it. I left that day without the biopsy. 

So, now im getting kinda paranoid and regret not having the biopsy done. 

Im back home and want to a dermatologist the other day. Told her my story and concerns. Showed her pictures of the mole and she wasnt worried. However, she said we coulndt do a sking biopsy since the mole has been removed  completely. 

Now my question is, can I still have this checked out? And how?

Im going back to another derm this week and probably want a skin biopsy. They should still be able to trace this if there was any cancer in it right?

Looking forward to your advice. 

Thanks guys!

Cheers

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GreggL's picture
Replies 7
Last reply 4/27/2016 - 8:17am
Replies by: Anonymous, Ed Williams, JuTMSY4, geriakt, GreggL, Bubbles

A couple months ago they found a tumor on my lower right lobe of my lung. Of course all my family and friends were saying it's probably nothing but I knew better. I've never had a tumor on my lung in my entire life, now being off Interferon for almost 5 months they find one. I had surgery to remove the tumor on 4/6/2016 and it wasn't pleasant to say the least. The were considering doing the needle guided biopsy then decided with my history just to be safe and cut it out. The surgeon came in the next day and said we don't have to wait for the pathology report he said it was melanoma which moved me to stage IV. I was actually ok hearing that because I already had two months to prepare since they first found the tumor. They said I did not qualify for a clinical trial right now because I had already been through Interferon, had so many surgeries and now there is no evidence of disease since they just cut it out. She said if it ever came back again I will qualify for one. My oncologist did want to start me on Keytruda though for at least one possibly two years. Her thought was that hopefully it could kill any microscopic melanoma that the scans won't pick up. The day I went in for my first Keytruda treatment (4/20) she said she would be giving my Opdivo instead. I was actually kind of happy to hear that after the little bit that I have read about both meds. I was wondering what your thoughts might be on that? Deciding to switch to Opdivo instead of the Keytruda that she originally planned on. I will say I'm a combat vet and I go to the VA so I was curious if price might have played a role? Would love to hear your thoughts. Thanks...

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laulamb's picture
Replies 14
Last reply 4/29/2016 - 1:03pm

Hello! 

I has a melonoma on my back and had wide area incision and sental lymph nodes removed.  The surgeon called to tell me cancer was found in 1 of the 3 lymph nodes but it had not broken through the capillaries.  He said that was very good.  Can someone please explain that?  He would like to remove more lymph nodes but I told him my oncologist had a PET scan set up for this Friday 4/29 and I am meeting the oncologist to go over the results on 5/3 in the morning and then follow up appointment with the surgeon in the afternoon of 5/3.  

The surgeon wants to wait to see the PET scan results (surgeon did say, which I am sure will be negative) and then will discuss with the oncologist the next step. 

I guess this would make me Stage III ... Can anyone give me any recommendations or feedback from this information?  

I am very sad and trying to hold it together but I was so expecting to hear there was no cancer in lymph nodes. I even met with the oncologist before surgery and he assures me with my tumor size of 1.3 mm I had nothing to worry about.  

Thanks in advance for any replies.

Laura 

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Replies by: Emma_Melbourne, stars, Anonymous

I am in Australia, and just diagnosed, and I wasn't given staging which fits the model that Americans are using.

 

Can someone tell me what stage you regard this as in the USA please?? (I know it's below the epidermal and into the dermal layer.)

 

Here's the info I have on my Synoptic report:

Malignant melanoma, superficial spreading subtype

Site: Right forearm

Clark level: 2

Breslow thickness: 0.25 mm

Ulceration: absent

Cell type: Epithelial

Mitotic index: Nil

Lymphovascular invation: Not seen

Neurotropsim / desmoplasia / satellites: Not seen

Features of regression: Present

Associated naevus (type): Displastic junctional naevus

 

Microscopy:

There are atyypical melanocytes at the dermo-epidural junction and small numbers of atypical melanocytes in the papillary dermis. The junctional melanocytes show nested and confulent growth and pagetoid spread. The dermal component is surrounded by a dense lymphcytic inflammatory infiltrate.

 

Thanks in advance for any help you can give me.

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DZnDef's picture
Replies 7
Last reply 4/25/2016 - 5:32pm
Replies by: sweetaugust, Anonymous, DZnDef, Brent Morris

For any of you curious about this series showing an alternative medicine take on cancer treatments but did not want to provide your email address to watch it, all episodes are available for free the rest of this weekend with no sign up of any kind required.

 

https://go2.thetruthaboutcancer.com/agq/replay/

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JohnA's picture
Replies 5
Last reply 4/24/2016 - 2:42pm
Replies by: Mat, Maria C, Ed Williams, JohnA

Hey folks, 

My wife has metastatic mucosal melanoma in liver, lungs, and rib, and she has what looks like a very small brain met or perhaps it's a previous hemorrage that is deep inside her brain.  

1 doc is not sure it is indicative of melanoma and so not sure about doing SRS or taking a wait and see to observe how Ipi-Nivo works on it.  She's about to start the combo and they could observe after 4 weeks or so to see if SRS is necessary.

Another doc suggests do the SRS right away and start the combo right away.

We're talking about major institutions with advanced melanoma teams: Johns Hopkins and U of Michigan.

So, given there's a slight discrepancy, we're considering seeing someone at Sloan Kettering. However, my wife is feeling super fatigued and just not wanting to travel for another appt. 

Questions:

1) what do you think about getting a 3rd opinion? Given the places we're considering, is there somewhere we've missed that would be especially experienced at dealing with brain METs? I've gotten the impression that SRS is so common, that it's done very well in most major medical centers.

2) Does anyone know if there are data to suggest that wait and see would be a good or bad idea in a case like this?  

3) We know SRS is enhanced by Ipi-Nivo, but does sequence matter? That is, could you do SRS after round 1 or round 2 of Ipi-Nivo and still get the bumb, or do you need to do SRS first before starting the combo?

Thanks for your input!

John

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MoiraM's picture
Replies 6
Last reply 4/27/2016 - 12:57am

I realised today that is a year to the day since my first Ipi infusion.

Good points: My tutours shrank and could not be distinguished from normal tissue in my last CT scan.

Bad points: My anterior pituitary gland is permanently damaged, so my body does not produce many of the hormones it should and living with inactive adrenal glands tuns out to be a bit tricky. Also my gut is still weird from the Ipi.

Other points that others may identify with:

1. My doctor said right at the start that if the Ipi worked, that would be 'a good thing'. When I turned out to be a responder (which was a total shock - I'm not the kind of person who pins my hopes on a 15% chance), 'good' became 'if you make it to three years you should make it to ten'. Despite reading everything I could get my hands on, I could not work out my chances of making it to three years without more evidence of melanoma. My husband and I decided on 50%.It seems a good enough guess after we looked at all those graphs and tables.

2. Scans. They don't get any easier with practice. I have a CT scan sceduled for Monday. I can fine until about a week before the scan. Then I have the scan. Then I have an appointment with my melanoma consultant a week afterwards. So I am a bit shaky for these two weeks. I don't like admitting it though, because I am one of the lucky ones. Ipi worked for me. I feel I am being ungrateful.

3. Why am I still working? I have an important job that I believe in but it is stressful and very hard work. I have an ongoing 'modified working' certifiate but I always go in and even end up doing more when my colleagues don't do their bit.There are other oprions but I cannot bring myself to take them.

4. I have the best husband in the world.

Other points that I doubt anyone will identify with:

1. I knew I had melanoma for years before I sought treatment because I have a phobia or doctors and hospitals. I honestly expected to be too ill for treatment by the time I could not hide how sick I was. That was the plan. Only it didn't work out like that.

2. In return for (a) various doctors putting up with me behaving as if I have a phobia of spiders and they are are 6 foot tarantulas and (b) them coming up with a treatment plan that meant I have not been admitted to hospital, I had a lot of therapy. The first course of treatment was to teach me to control the panic attacks and the seond to try and mitigate the actual phobia. The second involved CAT (cognitive analysis theraphy) and EMDT (eye movement desensitization therapy - which they use to treat PTSD) It's easier. The phobia has not gone. I now know that my childhood was not in the 'normal' range.

3. I used to say 'I can do death but I can't do doctors'. I think it is still true. I am definitely not where I expected to be or going anywhere I expected to go. It's all very weird.

All comments welcome.

 

Stage 3C Ipi/Yervoy responder with phobia of doctors/hospitals and pituitary dysfunction caused by Ipi/Yervoy

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Christine.P's picture
Replies 7
Last reply 4/23/2016 - 12:03pm

Hello everyone - 

I am stage 4a, on nivo for 6 months, and have questions for anyone who had/has brain mets that were sympotmatic. I have my next infusion on Tuesday and will be asking my oncologist about this then, but she won't know about patients' experience. 

I know and don't expect anyone to be able to tell me if I need to be worried, but sometimes it just helps to share an experience with those who get it, you know? 

So, for about a week now I have been waking up every morning with a bad headache. Already a migraine sufferer, I wasn't all that worried at first. These don't feel like my migraines as they are across my head (behnd my eyes mostly) rather than in one localized area. I also get nauseated and have actually been nauseated all day every day for this week. OTC meds take the edge off the headaches, which is good. 

The other thing - and the thing that actually concerns me - is the dizziness and the difficulty I seem to be having reading on the computer. (I teach online so I do spend a lot of time on the computer, but no more than usual these past months). I cannot follow the page when I scroll without squinting and I always feel like there is a slight - I don't even know how to describe it - pressure? in my head behind my eyes making it difficult to focus mentally. I wish I could describe it better. It feels like a heavy "fog" that makes my eyes feel unfocused and my brain slow and awkward. 

I've had days with this inability to focus occasionally throughout my life - but never all day every day for an entire week. This seemed to just come up out of the blue last weekend and I'm feeling a little stressed about it. Could it be some kind of delayed side effect of the nivo? 

Again, I know that no one can say if this is even anything except my doctor and probably some scans, but if anyone can share experiences that may be similar, I think I would feel better. Or at least I won't feel alone. 

Thank you for listening.

 

Christine P. 

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Jubes's picture
Replies 9
Last reply 4/25/2016 - 7:00pm

I love celeste's blog. I can't comment on it as I don't have a google account. Recently she posted a fun piece sharing the frustration of bullies, be they the conventional medicine or homeopathic type. 

I don't want to start an either/or debate. There have been so many. 

I am so lucky to have common sense doctors who give me the very latest medical science has to offer and are still fine with my seeing psychics and native Indian spiritualists, as they say they don't care who cures me as long as I am cured. 

Anyone who does not see the time and effort, intelligence, logic and expertise in celeste's excellent(free) blog, or her contributions here, is sadly missing the most informed help they could get. 

Thanks celeste!!

ps finally started remicade yesterday for the Pembro induced ankylosis spondyloarthritis and hoping for the best. Pet scan end of April but feelin good!!

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