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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jennunicorn's picture
Replies 12
Last reply 2/6/2016 - 1:48am

Does anyone have a great sunscreen they use every day that doesn't feel like they are wearing sunscreen? It feels like a neverending search for the right one. I have sport ones for when I am more active and don't care if I feel like I am wearing sunscreen. And I have face moisturizer with sunscreen in it that I like. But, finding that one for the whole body for just regular every day use seems difficult. I also hate the smell of most sunscreens. My derm recommended EltaMD sunscreens.. they are kind of expensive, not too bad, but before I go buying some, if anyone has tried it, do you like it for every day?

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jamieth29's picture
Replies 4
Last reply 2/5/2016 - 11:30pm
Replies by: Anonymous, jamieth29, Rita and Charles, Bubbles

Went in today for scan results and brain mri showed 3 spots. Two 3mm and one 4mm. The doctor wants to wait two weeks and do another mri to make sure they are mets as he said he's not convinced they are. They were not present on mri in June said there is no edema for whatever that's worth. I have a appointment with radiologist Monday. The body pet/ct was clear. The doctor wants me to go ahead and start nivo next week. He said i shouldn't do anything until we repeat scan. Don't know what else they could me it was pretty cut and dried they didn't show in June and are now present so...advice? Could hardly be around kids when i got home so scared that the kids will have to watch this play out.

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OkieJen's picture
Replies 11
Last reply 2/5/2016 - 11:24pm

So, just wondering if anyone else is worried about the new report on pregnancy and melanoma. I am 40 years old and diagnosed with a Stage 1a melanoma last September (0.25mm breslow depth reclassified from 0.4mm following a re-read at MDA and <1 mitotic figure). I had a subsequent WLE at MD Anderson in October. (no SLNs biopsies taken). I have a two year old daughter and when looking back at photos my melanoma was present when I was pregnant. I have a recheck appointment at MDA in April for thoracic radiographs (aka chest x-rays) and am seeing my local dermatologist for a skin re-check in February. According to the report, melanoma in pregnant women or women diagnosed soon after giving birth  (including stage 0 and stage 1) are at increased risk of metastases and their melanomas are more aggressive. Just wondering if I should be getting rechecks more often rather than every 6 months. Even more spooked now.

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Momofjake's picture
Replies 14
Last reply 2/5/2016 - 11:23pm

Hi my friends,

i have had a hard time getting on here since Artie. But I need a little advice. Jake has been on keytruda and a bone strengthener for almost 8 mo now. The first scan showed big improvement and the visible tumors shrank completely. Then Jake moved 15 min from home to try a light semester of college. He shared a room w his brother:) So glad he went! But next scan no shrinkage and it grew. 2 worst new mets--throat and rectum. All internal tumors remained--liver, lungs, spine, bones, sinus...he has normal side effects w white eyebrows, white side burns, some vitaligo and occasional mild rash that doesn't bother him and of course fatigue. he hasn't been out of his bed in 3 days. Today will be 4. It's been 10 days since treatment. He has severe aches and now a fever. Loss of appetite and now a little nausea. His last blood work showed his kidney numbers weren't great, liver struggling a little and tumor marker up again. Before this he has been very active. Fatigue though. He has moved back home to focus on his body. It's all he does 24/7. Sleep a lot, eat crazy healthy, try to gain weight, gym. He does nothing else and all his friends are gone. It's hard to watch. 

I do all I can for him. k. Day 4 or more in bed. TIME TO SEE THE DOCTOR??? He says it feels like flu and doesn't want to go in. 

Oh how I hate the many decisions. 

Thanks for getting thru the novel. 

Prayers and love to you all who are in this!

Kerri--mom of Jake

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Anonymous's picture
Replies 2
Last reply 2/5/2016 - 11:13pm
Replies by: Rita and Charles, Anonymous

My husband has been dealing with debilitating pain and swelling get in his ankles. The doctors say it's a reaction to the meds and to take benadryl. Can anyone tell me what is actually happening and if there is anything else he can do. He hates benadryl.


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Anonymous's picture
Replies 14
Last reply 2/5/2016 - 10:48pm

What would be a worse prognosis for stage 3. Having a ulcerated melanoma with micromets or having a macro node without ulceration. Just curious anon

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jc0709's picture
Replies 1
Last reply 2/5/2016 - 12:51pm
Replies by: casagrayson

Hi everyone,

Firstly, sending my very best wishes to everyone here who is fighting their own battle.

I'm Jen. I have been browsing this forum for a couple of weeks but feel now I would like to introduce myself in the hopes of finding support from others going through similar. Sadly, we have a lot of history of cancer in our family but no skin cancer as yet, so it helps to be amongst others who can relate.

I had an excisional biopsy yesterday on my 4th left toe, for a suspicious mole to be removed. I have known for years about a small freckle-like mark in this place, but in recent months I took a closer look and my husband agreed it needed checking out. It has increased in size, raised from the skin, and changed in appearance quite significantly. Not sure about everyone else, but between my toes is certainly not a place I look at much!!

It is now 6-7mm, a mixture of colours, with a dark network when you look closely, pinky areas, dots, lines. Very different compared to my other freckles and moles (I have quite a lot).

I saw my GP in December who did an urgent referral, saw Dermatologist on Christmas eve, then plastic surgeon in Jan, followed by surgery yesterday. All the people I've seen so far haven't said much about it, just that it has concerning features and needs to be excised. Makes me worry more that it can only be one thing due to the lack of discussion. Surgeon said up to two weeks for results, and I am booked for a follow up appointment on 24th Feb.

I am in a lot of pain today, but it's nothing compared to the worry and anxiousness I am feeling.

I'm not expecting a great amount back, as I'm sure its quite an unusual place to have a mole removed from! Just wondered if anyone may be experiencing similar, and how you all cope with waiting for results?

Kind regards



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karima49's picture
Replies 3
Last reply 2/5/2016 - 9:59am
Replies by: Anonymous, marta010, Scooby123

My mother was diagnosed with Stage 4 in December 2015. She has been on the Mekinist/Tefnlar combo for about a month now. She has had a major problem with nausea and vomitting. She went to DR 2/1/16. She is now to cut dosage in half. Once in morning and once at night instead of twice in morning and twice at night. It seems to be doing a little better but she is still just so weak. She can only do something for about 10 minutes and then she needs to rest. Is anyone else experiencing this and is there anything helping you? She has lost 23 within about 2 months. They want her to eat more to see if that helps get some strength back. Please help with any suggestions. Thank you. 

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Azcaddyman's picture
Replies 4
Last reply 2/5/2016 - 9:56am
Replies by: Anonymous, Azcaddyman, Janner, gregor913

OK here's a quick summary of what's going on


I went to my dermatologist to have a large lesion on my neck looked at. Although I was convinced it was melanoma, he insisted I was wrong. He suspected it was a bcc. He did a small shave biopsy. The pathology report showed ssm at least .60mm deep. No mitosis, nothing unusual except regressive changes at the base of the biopsy. I was referred to a surgical oncologist. Because we didn't know the actual depth I was scheduled for a slnb and wle. I went in for my procedure about 3 weeks ago. The lymph node biopsy failed. They couldn't get the radioactive tracer to drain into the lymph system. My surgeon did remove some tissue that showed some pickup of the dye but wasn't sure it was even a lymph node. 

Last week I went in for a post op follow up. The pathology report from the wle/slnb showed that the tissue was not a lymph node. Although it was cancer free. The "residual" melanoma was .8mm deep. No mitosis. Stage 1a. I was told at that point that since my tumor wasn't deep enough no further testing would take place. 

Now OK I understand how this works, you can't add the first biopsy to the final excision to determine depth. So this means my true staging info was lost because my dermatologist didn't do the right thing. However, is this important? At first they wanted to do a slnb but when that failed, is it OK to just say I'm OK? Would I be crazy to ask for an ultrasound study of my lymph nodes? My Dr assures me that the chances of spread are so low that there's no need to be concerned. So should I just relax? I get my stitches out next week. That will probably be my last appointment and after that I'm on my own. 

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Replies by: andie1059, jamieth29

Hi all,

I'm new this forum so I appreciate your support and patience! I just found out that my cousin’s husband has metastatic stage IV melanoma. It’s spread to the superior part of his left lung, but nowhere else. He’s 32, and from what I've seen, he’s an amazing father and overall guy. His wife is currently pregant, complicating things further. 

He is Romanian, as is most of my family. I haven’t lived there for many years and I don’t know the health care system well, but it doesn’t look very promising. According to Romanian law, cancer patients have the right to receive free medication, but drugs are very hard to find. They can be bought abroad, but this is a solution only for people who can afford it.


It sounds like opdivo or yervoy (or a combination of this and other treatments) are the best chances he has right now, which just can’t be found in Romania. Out of pocket, these drugs cost an obscene amount of money -- which no one in my family has. Does anyone have any suggestions or new avenues to consider? I have no idea how payment for drugs or how loans work in Europe.


I've done some intiial research into clinical trials in the US and in Europe, and I was wondering if anyone here has any more information on them? From my cursory research, it seems that clinical trials in the US are open to non-US citizens, although I imagine this would be a barrier regardless. I live next to a major cancer center in the US that is recruting patients for a trial for his type of cancer. If there was a chance he could be accepted into one of these trials, I could take him to appointments and he could stay with me. 


It sounds like health visas can be a little tricky but manageable if you have the logistics figured out (a citizen sponsoring you and proving that you have the money to afford your stay, etc.). My family could afford to fly him out here and cover the basic costs of his care, but obviously can't afford the whole treatment itself.  


I guess the real question I have is about timing. How long is the process to get into a clinical trial? I assume that he doesn't have a ton of time, but it also doesn't seem like there is an alternative in Romania. Could anyone describe what the evaluation process is and generally how difficult it is to get accepted? I'm planning on calling some of these trials on Monday to see if I can find out more. 


I've never had an experience with cancer before, and I'm just really down. I would appreciate any thoughts from people who know more about this type of cancer, or just have any ideas at all. Thanks so much.

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JackieH's picture
Replies 2
Last reply 2/4/2016 - 9:47pm
Replies by: mdoh, WithinMySkin

Every year on the anniversary of my first diagnosis I revisit this site where I used to scan all messages looking for posts that gave me hope. So I write this esp. for newbies  to remind people there are many of us who no longer visit this website.  My  daughter was 9 when I was diagnosed with my first melanoma (stage  2b) I was diagnosed w my second primary 2 yrs later. My daughter is now a young woman of 23. I hope my message might help give some comfort to others.    


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katie1's picture
Replies 9
Last reply 2/4/2016 - 9:36pm

Given the recent FDA approval of adjuvant Ipi, I wanted to let people know my husband has been NED now for 30 months since starting the IPi vs Interferon trial. He was in the 3mg/kg arm of Ipi.  He only received the 4 induction doses due to side effects. He is stage IIIC (T4bn2cM0- with deep amelanotic nodular lesion).  He had rash and itching beginning after the first dose (and then ongoing which was treated with topical steroid and benadrly), ocular (after 3rd dose-resolved with steroid drops). and He also started with minor diarrhea after 3rd dose which coninued on and off managed by Immodium.  Following the 4th dose he developed hypophysitis.  He was treated with high dose steroids and all his hormones returned to normal.  However, after his taper from steroids he went into adrenal crisis and has been steroid dependant ever since (due to adrenal insufficiency). It took a little over a year for the dosage required to stabilize (required higher dosage of hydrocortisone over time).  He is currently doing really well and is very thankful for the trial option.

I wish all of you starting on Ipi the best.  Report all side effects even if they appear minor to your oncologist right away.  Make sure you are being treated by a melanoma specialist with experience treating these side effects.


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gregor913's picture
Replies 11
Last reply 2/4/2016 - 9:01pm

Hey everyone so I finished my second dosing of ippi and have my 3rd scheduled for Feb 15. Right now my oncologist has me scheduled for 4 doses total of the 10mg/kg. If everything goes well after all 4 doses here is my next question. I was reading the yervoy website for preventive care and it says that you should have the 4 initial doses then every 12 weeks for 3 years maintenance doses.

Was just wondering the people who are taking ippi right now if there onc has them scheduled for the maintenance doses because mine does not. Do you need the maintenance doses?

thanks Greg

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jmm1052's picture
Replies 17
Last reply 2/4/2016 - 8:41pm

I have read with great interest the topic on IIIa using IPI- my husband will start the 10g dose in 6 weeks. We have been told that at the moment there is no other treatment than interferon and no trials for his level. The possible side effects are pretty much zero which is phenomenal- if you do get any you are to report them immediately to the doctor as any of them can be life threatening. Since this was just approved in Dec 2015 I realize not many have had experience with it yet but I'd really like to hear from anyone who has actually done any treatments   My husband has Stage IIIb with no idea where it first presented. He felt a swelling in right groin area and it turned out to be melanoma- very large 5 cm and was removed along with all of the nodes in the area this month. We are waiting for it to heal before treatment begins. At the moment he is NED but we are seeing issues with fluid buildup from the complete dissection of the nodes in that area. Has anyone had experience with any of this? 

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