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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Anonymous's picture
Anonymous
Replies 2
Last reply 9/27/2016 - 1:29pm
Replies by: Anonymous, debwray

Hi everyone,

I'm brand new to posting but have been lurking for a couple of months. I have a LOT of moles so have been monitoring them fairly closely for a number of years and have been on a 6-month skin check schedule with my derm for the last 3 or 4 years. I have had several moles removed in the last 10 years that were in various stages of dysplasia. I had a mole removed from my upper back in May of this year that came back melanoma in situ. In a lot of ways I was not shocked because my father died of cancer (not melanoma) and my mom died from a retinal melanoma that metastesized to her liver and other organs so I certainly had the family history. The mel was removed and then I noticed a dark mole on my left cheek that was not very big but that I had not noticed in previous months and it looked really strange (in a bad way) so just had it biopsied earlier this month and it also came back as MIS and will get it excised in a couple of weeks. I had just kind of come to terms with the first MIS and was really taken aback with this second one because I didn't expect to have another mel in such a short time period. I have felt anxious, depressed, sad, but grateful and know I am very, very lucky to have caught both of these in the early stages. But it has really rocked my world and left me depressed and not knowing what the future holds for me. I look at all the moles I have and think they ALL look questionable at this point as I am super-scrutinizing everything. I know that is unreasonable and I think it is just a stage that I need to get through. I have an appointment with my derm next week just to sit down and discuss my situation to answer my questions and see if there is anything else I could be doing (other than the obvious and important things of staying out of the sun, wearing sunscreen and long sleeves, etc.)

I guess I just wanted to "unload" all my feelings on the boards and most of all wanted to say thanks to everyone for posting all the great information and stories about what they are going through. I am trying foremost to educate myself about mel and be super vigilant on my monthly skin checks. I had my husband take a lot of photos of my body so I can compare against them every month. I have a lot of moles on my back, which are a lot more difficult for me to monitor and I get very anxious about those especially having this 2nd mel. Thanks for letting me tell my story and to vent my feelings and emotions and thanks for all the communal support each and every one of you provide! I have found it so helpful.

Gail

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mom3girlsFL's picture
Replies 3
Last reply 9/27/2016 - 1:25pm
Replies by: Yvette, debwray, Patrisa

Hi All,

Just wanted to post real quick recent scans show NED!!! After being on (sometimes off) various doses of tafinlar mekinist combo I am mel free! Wow, can't even believe it! 

Have been on almost a year so i was honestly not expecting the good news.  Even the last lingering 2mm lung nodule has disappeared.  Oncology appointment tomorrow. Not sure where we go from here...any thoughts?  Will i be on meds indefinitely?

Ugh, just trying to enjoy the news and clearing "thoughts" from my head!

Laurie

2002 stage 1

2010 stage 3 - radical groin dissection

2015 stage 4 - lung, retroperinoteal/para aortic - Taf/Mek combo

Do not fear tomorrow, God is already there.

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Julie in SoCal's picture
Replies 15
Last reply 9/27/2016 - 1:02am

Greetings Friends,

Yesterday I saw the Rock Star and did the "paper work" and body work (blood, ekg, and pee in a cup) to join INCB 39110-17.  I'll have to have scans again but provided lung tumor is still there (short of a miracle, there's no reason it wouldn't be) I'll start Day 1 Cycle 1 next Wed- Phew!  Maybe this roller coaster ride is coming to a full and complete stop or at least maybe slow down a little.

I don't know if I'm on the JAC1 or PI3-k arm, but either way I'll get it a drug with Pembo and I've responded Pembro well in the past. So I'm hopeful.

Meanwhile I'm tired.  All the hurry up and wait has been stressful.  Not knowing what the plan is has taken a toll. I'm very glad to have a plan.

Thanks again for being fellow companions on this wild ride.

Shalom,

Julie

 

 

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

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Anonymous's picture
Anonymous
Replies 3
Last reply 9/27/2016 - 12:21am
Replies by: Wbatz, Bubbles, Anonymous

I had melanoma removed from my right foot, lymph nodes from my right thigh. I'm on my 5th dose of lectures and so sore and exhausted, I can barely get through a day. I used to play several sports, that's over with for now. Has metrics had this effect on anyone else?

Thanks

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DZnDef's picture
Replies 10
Last reply 9/26/2016 - 11:02pm

I've been mostly offline since my broth4er's death and am not caught up with everyone.  I hope you are all proficient beast-takers now.  I had a setback.  After 4 years of confining the beast to my lungs it finally spread.  I noticed a lump in my right hand one month after my brother's death.  Followed  by more lumps just under the skin in August.  Before I could make it to a scheduled CT I woke with double vision and signs of stroke.  A CT at the ER showed 7 brain mets.  Started Taf/ MEK today.  Liver is clear so that's good.  Hope these drugs do gthe trick and go easy on me.  Hard to type.  Lack of control of left hand.  I had a good 4 years so no regrets.  Grief and stress will do a number on you though.  Don't worry, be happy.  That's the secret to good health!

 

Cheers!

Maggie

Maggie - Stage IV (lung mets unknown primary) since July 2012

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BrianP's picture
Replies 11
Last reply 9/26/2016 - 10:49pm

Tumeric comes up from time to time on here.  Thought this was a pretty interesting article.  Study results toward end of article.  Bottom line is supplements didn't show much benefit but adding tumeric spice to foods seems to have a positive impact.

http://mashable.com/2016/09/20/turmeric-experiment-superspice/#8OvNB89clmqW

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Esmith123's picture
Replies 2
Last reply 9/26/2016 - 7:31pm
Replies by: jennunicorn, Anonymous

Hello, 

It takes a long time to see a derm where I live so I have come to this forum to ask Melanoma questions. I have a tanning history so I am trying to keep myself informed about how to check my moles and what to look out for. I have had a spot in my armpit for about 5 years now. It is weird shaped and has not changed that I know of. It's under 3 mm but was wondering if it would have grown much since noticing it 5 years ago? I am trying to be as careful as I can be and get as much information as I can regarding melanoma. Did your melanoma conntinuously grow each month or year?

Thank you in advance.

-Emily

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Elana's picture
Replies 2
Last reply 9/26/2016 - 3:46pm
Replies by: Elana, WithinMySkin

Hey Everyone,

I was diagnosed with Stage 3B in late June 2016. I joined the interferon/ipi vs keytruda clinical trial and was randomized to the standard arm and went with interferon. I know that decision is somewhat controversial but that's not what I am posting about here.

After 2 weeks of high dose interferon infusions we had to hold because my LFTs were off the charts. My AST was in the 500's and my ALT was in the 200s. A week later one of my LFTs was still 5x the normal limit so we decided to drop from the trial in order to not miss out on 2 full weeks of HD infusions (which my oncologist felt was the most important part). We waited 4 more days until my LFT's were in the 80's (ALT) and 60's (AST) to restart treatment. That was this past thursday 9/22. They restarted me on a 33% dose reduction (21 million units or something like that). 

Yesterday, after my infusion when I was leaving MGH, I felt like I was having epigastric pain. It felt like a lot of pressure or gas. I thought maybe it was heartburn and I took some tums and rested for a bit before I went to ultimate frisbee practice where I ran around for 3 hours without any problems. Then last night when I went to lay down in bed I felt this overwhelming pain and pressure in my epigastric area. It was not a burning sensation like heart burn. It kept me up most of the night and eventually I realized it hurt more on my right side. This morning it hurts to walk around and breath deep and the pain is dull but hurts more on my right side, just about where my liver should be. I don't have any jaundice, nausea, or any other symptoms. My stools are light brown and not clay colored. The pain goes away when I sit upright. I told all this to the nurses and a doctor took one look at me and said I was fine. 

Mostly I am just wondering if anyone else has ever had these symptoms?  What it might mean? Should I ask to get my LFTs re-checked? I have my last day of infusions for the week tomorrow.

In general I have been doing great with the interferon treatments, my oncologist cannot beleive it. I am 29 and was in the best shape of my life when I was diagnosed. I have continued to stay active and only really ever have symptoms on the first 2 days of treatment, and they are managed well with excedrin/tylenol/zofran.

Any info people might have is greatly appreciated. Thanks!

Best,

Elana

If you are interested in my whole story, I have been writing a blog: https://schwamingcancer.wordpress.com/

Elana

Stage 3B 6/2016

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Momofjake's picture
Replies 7
Last reply 9/26/2016 - 1:06pm

Quick question,

Jake is finally debating ipi. I felt a little inspired at 4am:) If he is going to give a new treatment a shot, wouldn't a combo be better?? Why not ipi/nivo?? Or what else? He has done: interferon, biochemo, rafiation(tons), pembro, and TAF alone due to side effects. I read his scan report. It's pretty darn good compared to 4 mo ago! It feels like he has a shot at clearing this out even more if he tries a combo. I think he is about to give up, go natural and feel good as long as possible without hospitals and feeling crappy. I want to give him some hope❤️

Thanks all--Kerri

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CindyCo's picture
Replies 7
Last reply 9/26/2016 - 12:07pm

I was wondering if anyone could give us advice as to whether to have a surgical oncologist or colorectal surgeon perform my mother's surgery.  She will most likely need an APR resection and inguinal lymph node removal.  We have an appointment with a colorectal surgeon (who has great credentials and used to be chief of surgery) this Tuesday, September 27, but we cannot meet with a surgical oncologist until October 4 (he has a packed schedule because he is in demand). 

Because we are currently inclined to take the earliest surgery possible, does anyone have any insight as to whether we should hold out for the surgical oncologist or vice versa? 

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WithinMySkin's picture
Replies 26
Last reply 9/26/2016 - 10:46am

Hello all my fellow fighters! I feel as though we've had some seriously tough times lately. Reading through the board can be so difficult some days because my heart hurts when there is bad news. I know the flood of emotions that you all go through, and I'm right there with you. The stress, the anxiety...I've been there, and I will be back there soon with my next scan in October (fingers crossed for good news!) But I wish I could reach out and hug every single one of you who are going through a tough time right now!

 
So I started thinking. How can I help? How can I make this situation better? I know a lot about my own anxieties, but how can I help other people feel less anxious about what we're all going though?
 
Then it dawned on me. I have worked for almost a decade in the operating room as a neurophysiologist and an anesthetist. That's what I really know best, and for most people surgery is terrifying, even though it's really quite normal for me. So let's start there.
 
What scares you the most about surgery? What do you wish you knew about general anesthesia or the O.R. that would help calm your nerves? What questions can I answer for you all? How can I help?
 
*Please refrain from asking questions specific to your condition. I don't know everything and I'm not your doc, but I'm always here to give you an internet hug! And if you don't want to post here, you can always reach me at my blog.
 
Hope all is going well in your battle and keep fighting!
Lauren
 

WithinMySkin

www.Withinmyskin.com

 

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MoiraM's picture
Replies 4
Last reply 9/26/2016 - 2:14am
Replies by: MoiraM, debwray, Polymath

I joined a forum in the UK because my melanoma specialist nurse hinted that she would really like me to. The forum is an obvious first port of call for people with melanoma in the UK, because it is part of the website of the biggest UK cancer charity. Even so, it isn't very active and there was no one contributing with endocrine side effects of immunotherapy.

My problem is, what do you say to people who have been diagnosed with malignant melanoma (or whose relative has been diagnosed with it) and are absolutely convinced that they (or their relative) have been condemned to death?

It doesn't seem to have any correlation to the patient's staging. Often it is someone who is stage 1 or stage 2.

I guess I could just not reply but that seems mean when they are reaching out. Also, it is often only after they reply to my response that I find out that they are not being swayed by facts or logic.

 

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

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Anonymous's picture
Anonymous
Replies 6
Last reply 9/25/2016 - 11:32pm
Replies by: Patina, Anonymous

Hello:

I recently had a melanoma scare.  Everything is fine now.  I want to get continuous screening from a dermatologist that is a melanoma expert.  All dermatologists I found are mainly cosmetic.  Any recommendations of melanoma dermatologists in LA or the OC area?  Or Southern California?

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Redlo8's picture
Replies 5
Last reply 9/25/2016 - 11:24pm
Replies by: Redlo8, Anonymous, MoiraM, debwray

Hi Everyone,

 

My wife is 55 and has Stage 4 Metatastic Melanoma, She has been on Keytruda for 18 months. It is doing its job very well with all "spots" gone or shrinking significantly.

She has a few of the common side effects like tiredness, skin irratations etc but one that seems a little less common is a lip reaction.

Her bottom lip (top lip is fine) has swollen to twice its size and is constantly bleeding or forming a blood blister, overnight it scabs up only to fall off in the shower and start the process all over again.

While not extremely painful it certainly looks very nasty. Along with this her gums also regularly bleed and she has bad breath from the constant blood in her mouth and the innability to brush her teeth very hard.

I have searched all over the internet for other peoples's stories that may offer a solution but have been unable to find many references to this ailment.

Her doctors have prescribed so many different creams and ointments, speciality bandages etc but nothing has made much difference, if anything they make it worse. The most effective product to date has been petroleum jelly, it is not a cure for the lip but it seems to hold it at the current level for a long time.

She has had this now for approx 12 months with it steadily getting worse.

Has anyone had this issue or know of a product that may help the situation? I often wonder if it is psoriasis (she got this on her hand and arm when Keytruda was first injected) but this cleared up after using a product called Moo Goo. Unfortuantely this product hasn't helped her lip.

Any info would be greatly appreciated, and if anyone would like some positve news on Keytruda or would like to ask questions please feel free to ask.

Kind Regards

 

 

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Anonymous's picture
Replies 5
Last reply 9/25/2016 - 3:03pm
Replies by: Ed Williams, debwray, Anonymous, MoiraM

Hi,  I have been scanning these boards and have been inspired and immpressed by the knowledge that exists here.   I know I probably have a very unique situation that probably no one can offer much help with but I wanted to ask in case.  Here is my background.  I had a legion on my arm removed in 2008 that came back "atypical spitz nevus" with heavy lichenoid inflammation.  I had it further exised and have never gave it much thought since.  In 2015, I had a suspicous mole on my toe removed that they pathologist kept sending off for 2 and 3rd reviews.  However, when the final consensus came back it was determined it was fine.  That place on my toe grew back (was a shave biopsy) and the dermatologist did not seem concerend.  However at my last 6 month checkup, he looked at it and said he would have it excised completely since it continued to grow back and given the fact that I was pregnant.  So, I went to the surgeon to have this done.  However the surgeon recommended against the removal due to risk to the baby.  So, I decided to wait till after delivery.  Over a year ago, I had read of the Oncoblot Test (an early detection cancer blood test) and decided to take it.  Well, to my suprise the results came back last week Positive for melanoma.  The blood test is suppose to be able to detect a tumour that is 2mm or larger.  Which is why they call it early detection, however from what I am reading on melanoma 2mm does not seem that early.  So, now I have this information that I have melanoma but am not even sure where.  Plus the fact that I am 8 months pregnant.  I thought about trying to get into MD Anderson as I feel my case is unique.  I am not sure what to do.  I did call the surgeon about my toe and they indicate I can not be seen untill November 21! 

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