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
Replies 2
Last reply 8/3/2015 - 1:59pm
Replies by: Ginger8888, Anonymous

My Dr said they changed the upper limit of the normal range from 100 NG/ML to 50 NG/ML, due to Increased risk of hypercalciuria.  What is the recommended level we really be at?

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Anonymous's picture
Replies 5
Last reply 7/26/2015 - 4:21pm
Replies by: Anonymous, mrsaxde, jamieth29, SABKLYN

Can anyone shed some light on what will happen in my first meeting wtih the surgical oncologist? What will he do in that appointment? 



Christine P. 

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jamieth29's picture
Replies 10
Last reply 7/29/2015 - 3:35am

Well after signing papers for a trial in chicago Wednesday i got home and for some reason was looking at my scar. As i looked closer i noticed a bunch of small tiny dots up and down my scar very small. I immediately freaked out and called the derm to biopsy them. Again the cancer is back. Not sure how we are going to approach this. I'm pretty positive there is just to many to resect and even if the surgeon can I'm not sure it is worth it. The spots keep coming back very fast. My last scan was june 16th and mri was june 10 and so far have been clear. I did have the deeper groin dissection on june 25 because of positive node biopsy seen on june 16 scan. I have had no radiation or treatment just surgery since my diagnosis in april. I have had doctors tell me radiation doesn't work but the radiologist thinks it might. My question is anyone have experienced anything like this? As of right now the trial is out because i have to be ned. My onc. At home thinks maybe radiation then ipi. I am seeing surgeon monday and then Dr Luke in Chicago on tues to get his opinion. Limb perfusion will not work because its too high on groin. Does systemic treatment work on superficial legions? If I'm 3c unresectable should that open up pd-1 to me and would it be worth trying them as first line drug? Also wondering if braf drugs might work on this although i don't want to use them this early. I'm going insane with this crap it just keeps coming. Any help is appreciated thanks.


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Mat's picture
Replies 16
Last reply 7/29/2015 - 11:27pm

Earlier this week I posted that I thought I was having a weird side effect from Keytruda.  I'm having pain behind my left eye and my vision in that eye is "off".  I went to an eye institute which ruled out inflammation in the eye (e.g., uveitis) and my pituitary panel came back mostly normal.  I moved-up a regularly scheduled brain MRI thinking that maybe I had inflammation of the optic nerve (neuritis)--but it turns out that I have a new 15mm brain met that's pressing on my optic nerve.  My last MRI (which was clear) was on June 1st, so--as we know--things can change quickly.  (I've stressed in earlier posts the importance of Stage IV patients receiving routine brain MRIs.)  I've had 2 brain met previously--one in 2013 and one earlier this year.  Both were smaller and in "better" locations and were treated with gamma-knife.  Based on initial discussions, it sounds like this one may not be a candidate for gamma-knife, but rather a proton beam procedure or surgery.  It's unclear based on these discussions the degree to which my vision will be at risk.  I'll know more on Monday.

Of course, dealing with the brain met is only the first order of business.  I'll also get scanned this week, after having now moved up those scans as well.  My last scans while on Keytruda (at ~14 weeks) on June 1st were stable with some minor reduction.  I have one small lung met (less than 1 cm) and several small liver mets (less than 3cm).  I'm now at ~22 weeks.  A treatment decision is likely coming.  Unfortunately, having done BRAF-MEK, ipi and Keytruda, the next step is not obvious. 

I'll report back as I learn more over the next week.  Thanks.

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stars's picture
Replies 21
Last reply 7/31/2015 - 11:29am


I'm sure this topic has been done before, but things change over time. I'm really curious what changes, if any, people have made to their diet and lifestyle after a melanoma diagnosis. My instinct is to try to clean up my act a bit - I don't really drink or smoke, but I'm reading up on plant-based diets and working towards getting a bit more exercise and balance in my life. The book I'm reading is The Complete Macrobiotic
Diet by Danny Waxman - I don't know if I can implement all the changes, but I can certainly do some and they line up pretty well with e.g., the Harvard Healthy Eating Plate.  Thoughts?



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davekarrie's picture
Replies 2
Last reply 7/24/2015 - 4:56pm
Replies by: RaquelP, dfeng

I am worried that I have a possible lung met.  My history: I had a 1.5mm mel in Nov 2010, went micro to 1 lymph node, 42 nodes removed under left arm,  been NED since.  Have been healthy since about 1 month ago when I started coughing.  Cough has been getting worse, went to dr. last fri, thought maybe infection, have been on antibiotic for 1 week, not better. Got chest xray the other day and dr. said there is a 3cm spot on right lung. I go see my oncologist next Tue sure they will do scans.  Hoping this is some sort of infection and not a lung met, but preparing myself for the worse and wanted to touch base with this awesome group if this is the case. Thanks for any input. Dave

Live life to the fullest and enjoy each day! #noonefightsalone

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DebbieH's picture
Replies 10
Last reply 8/9/2015 - 12:02am

I used to frequent this board several times a day, for years, but something happened and I wasn't able to log-in.  Long story short, I put in my old password tonight as a lark and here I am.  I don't see many names that I recognize (hi Janner!) but for those who might remember me, I'm still doing fine nearly 14 years after stage 3C and interferon. 

I see some things never change and as I was scrolling I saw anonymous posts actually telling someone to fire her oncologist for suggesting interferon as she was about to start it.  Argh.  Yes, we know now it cannot cure melanoma.  We do know that in a small subset of people it can delay recurrence and what is wrong with that?  For me these extra 14 years have been wonderful.  It was NOT a wasted year.  Jeesh - let's not bash each other's treatment decisions.  It would be easier if we had better options that worked for a large number of patients but we aren't there yet.  We all do what we think is best for us.  It feels good to be back.  Good luck to us all.

DebbieH, stage 3C after interferon and no scans (yeah I'm really outside of the box - lol).

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Beezer's picture
Replies 7
Last reply 7/25/2015 - 8:45am

Just one hour ago I got the news from my brother in law, that my darling sisters fight is coming to an end, she had only one keytruda infusion but had deteriorated so bad in the past two weeks that after scanning her a few hours ago they informed my brother in law that she is too far gone and there is no point with the keytruda any longer as my darling little lamb had lost her battle and now must go back home to die, as I write these lines I am utterly shattered I really thought this drug would help extend her life it's even harder for me right now as she lived in Austrslia and I'm in Ireland, I had hoped so much to go to see her soon but my husband was hospitalised with a pericardial effusion and he's not well so I am nursing him and feel so so useless no being able to hold my sister and tell her how much I love her Oh God I'm so sorry for my emotional outburst at the moment but I'm sitting here in the dark and am torn in half. If anybody is reading this and knows anything about how long she might have I could prepare the rest of our family tomorrow as we all live here. She has lost the use of her hand and legs and is sleeping a lot and her husband ( my hero) told me that she really does not know what's happening as her cognitive awareness gone too, he thinks this is a little blessing as she very happy in her own little unaware state Thankyou for reading 

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Christine.P's picture
Replies 8
Last reply 7/24/2015 - 2:11pm

I just had biopsies done on two moles and the doctor said both came back positive for melanoma. The mole I went in to have checked is very large - all total about an inch-and-a half around/wide and you can actually see some below the skin. The second was a small, but "protruding" mole on my left arm. 

The doctor did a scrape biopsy on my arm and a punch biopsy on my leg. My confusion is this. The prelimary pathology report gives details for the scrape biopsy - but NONE for the let. I have the full report. What does this mean? 

The doctor did tell me I need to have both melanomas removed (of course) and senitnal node biopsies for both sites as well. 

Any informaiton will be appreciated. Thank you!


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Anonymous's picture
Replies 1
Last reply 7/28/2015 - 7:08pm
Replies by: DianaD


I thought I would give this a try. My finance is who I am writing about, not myseld. He is 22 years old and has moles on his body his entire life. He has had them checked around 6 years ago. Well, recently he has been having night sweats every now and then and he also has a couple "holes" on the sole of his foot. I read online that these could be linked to melanoma.. and since he has so many moles that does not surprise me. He also has developed two moles on his scalp that have caused grey hair to form.. I read that those are nothing to worry about but as his fiance and him only being 22 I am FRIGHTENED. I guess what I am on here asking is... because he had these "spots" on his foot and occasional night sweats is he in danger of having melanoma??? We go to doctor in September but so scared to wait that long.


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jvictoria's picture
Replies 13
Last reply 7/28/2015 - 11:38am

Hello all,

Melanoma Stage III, I have already distal thumb amputation and sentinel node which came back with two positive nodules.

I'm currently scheduled for Lymphadenectomy 7/31 but have been told it would be a good idea to get scans (PET/MRI) done before; some doctors are saying do scans before, some say do it after surgery. Doing before would mean 3-4 week postponement of the Lymphadenectomy.



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Anonymous's picture
Replies 2
Last reply 7/23/2015 - 4:25pm
Replies by: stars, Anonymous

Good afternoon:

I was dx with stage 1b melanoma last June, had a WLE and SNB based on mitioc rate.  Recently I noticed a small red slightly raised spot on my lower back.  It's further down then where the original lesion was so it's not in my scar.  I have a derm appointment in September so I'm going to keep an eye on it to see if it' get's larger.    Could this be melanoma that has spread from the original spot and would it be red?   

Wishing everyone blessings.


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mrsaxde's picture
Replies 4
Last reply 7/24/2015 - 2:15pm

After getting what my doctor called a "mixed" response to Yervoy, he decided to start me on Keytruda. My most recent scans, the last being a CT scan in May, revealed that internally, my disease appears to be stable. There is one lesion in my right lung that has not changed since last November, and the CT scan picked out two very small lesions in the same lung that were not present on a PET scan that was done in February. But the doctor said they were so small that they may have been there, but they were too small to be caught by the PET scan.

So internally there doesn't appear to be much going on. But I keep getting new skin lesions, which is why the doctor decided to go ahead with Keytruda. A couple of lesions that have been there for a while don't seem to have gotten any larger. In fact, they may have shrunk ever so slightly. But I've had another 4-5 small lesions appear near the site of the orginal excision.

Anyway, I'm looking to hear from people who have received Keytruda following a partial response to Yervoy. What response did you get to Keytruda? From what I've read, the response rate for Keytruda is lower than that for Yervoy. But if you have at least some response to Yervoy, does that mean that you'll have at least a partial response to Keytruda?

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rabbits68's picture
Replies 3
Last reply 7/28/2015 - 5:50pm
Replies by: rabbits68, Aussielyn, dfeng

3 month scan showed tumor regression in lungs, liver and bone! One has disappeared! I am having a few side effects from the meds. Anyone experienced back pain or joint swelling?  My wbc count is getting low and doctor has mentioned adjusting dosage. I am so thrilled about scan but am scared about wbc level.  Any personal experiences? 

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Anonymous's picture
Replies 2
Last reply 7/25/2015 - 7:15am
Replies by: jpg, Anonymous

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