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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On Thursday, November 5th, the MRF will host it's 3rd annual Wings of Hope for Melanoma gala in Philadelphia. 

Join the MRF and the Susan Fazio Foundation for Melanoma Research (co-host of the event) as we honor Christine L. Egan, M.D., Dermatology Ltd., Clinical Associate Professor of Dermatology, Perelman School of Medicine at the University of Pennsylvania, with the MRF's Humanitarian Award.  The MRF will present its Courage Award to Phyllis Schantz and Paul Skibinski* for their courageous battles with melanoma.

*Award accepted posthumously by Sarah Yeoman

The event will feature exquisite small plates, cocktails and one of the city's best views at the Downtown Club in Philadelphia. 

If you or a loved one are in the Philadelphia area, please join us.  Tickets are still available and directly benefit the MRF's mission to promote research, education and awareness of melanoma.  Purchase your tickets at:  Thank you.


Joe Fazio

MRF Board Member

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DZnDef's picture
Replies 2
Last reply 10/28/2015 - 3:05am
Replies by: DZnDef, stars

I watched the whole series and found there is definitely some worthwhile information here.  All 9 episodes are now available to watch until midnight Sunday EST for free.  No need to provide your email address.  The only thing they're selling is the series itself.  It is eye-opening and thought-provoking.  I would encourage folks to watch Episode 9 - survivor stories.  Also, Episode 3 had a section on Melanoma and the Rigvir therapy in Latvia.

These episodes are geared towards those that are curious about natural and alternative treatments for cancer, either on their own or combined with conventional treatments.

Again, no need to provide your email address (so no pesky mailing lists).  Just watch the episodes that interest you until midnight Sunday.  See what they have to say and make up your own mind.



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

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JoshF's picture
Replies 6
Last reply 10/27/2015 - 11:08pm

My derm called and said intial tests showed lump isn't a cyst and something about lymphocytes being present and blue cells..sorry it was like Charlie Brown's teacher talking. I was upset with him because now it's being sent out for further testing. He said it still can be a number of things but I told him I've been down this road before and with my history, it should've been tested from the start for melanoma. He has "basic" path in his facility so when anything is suspect he sends out. Now I have to wait how many more days??? This derm has been great for 5 years; feel like ball was dropped here.

So I freaked out and emailed my oncologist to have scan moved up which she will not do because she can;t say it's melanoma and if it is pathology will dictate what she wants to do in regards to scan. She's great and I feel like a jerk because I get so worked up with her. I just can't help but second guess everything now....everytime I think I have this beat...

I appreciate everyone's support and responses over the years. This forum has been great to vent. Wishing you all nothing but the best.



Let's work for better treatments....for a cure!!!!

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Bearsworth's picture
Replies 6
Last reply 10/27/2015 - 7:49pm

Just had scans done last week and they found a swollen lymph node. I have hade 2 WLE's on my back and lymph nodes removed in my left and right groin.  Had the deep ones removed in my right.  Experience shows that this is Melanoma as well but the biopsy hasn't been done yet.  It is scheduled for this week.  If this comes out as positive for Melanoma, we are looking to do IPI/NIVO treatment.  Obviously I am very nervous and am praying the biopsy is benign.  If anyone could help with some of these questions I have, I would appreciate it. 


1.  Will the meds affect my lymphadema in my legs?

2.  Will I have to get a port?

3.  What kind of side effects/symptoms should I expect?  ( I am a healthy 42 yr old other than Melanoma)

4.  How long after your first dose did you end up with side effects?

5.  Will I be able to function normally throughout the day with my job?  (Desk Job)

6.  Will exersize help or have adverse effects to the side effects? (Walking and light jogging)





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triciad's picture
Replies 9
Last reply 10/27/2015 - 1:39pm

Dear Fellow Warriors,

I have been battling this disease for the past six years,  Originally diagnosed at Stage IIIB.  Did a year of interferon, radiation, leukine, and yervoy.  Last week's scans showed mets to spine, lungs, liver, and belly.  I used to come here daily to stay on top of treatments and be inspired by the warriors battling this disease.  Whenever I could, I gave some advice on treatments I had, but I really didn't have the experiece to chime in often.  Unfortunately, I have been out of touch for the past few years taking care of my aging parents.  Now, I'm just at a loss with my latest scans.  I would greatly appreciate any input you can offer.

I am a teacher, so I'm not sure what to do about school.  Do you think I should resign immediately?  I don't want to die during the year on my students.

I just had my first dose of Keytruda.  I'm wondering if anyone knows if this drug works on the kinds of mets I have.  Also, I have increasing pain in my back where the bone mets were seen.  Any ideas for pain management.  Does it intensify quickly?  At first, I just thought I pulled a muscle.

Thanks for any help you can offer.

God bless all of you for the battle you fight or help others fight daily!


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emagdnim83's picture
Replies 5
Last reply 10/27/2015 - 12:03pm

Hi everyone,

i've posted a few times about my fathers journey with metastatic amelanotic melanoma. A few Days ago i've posted about him here:

We didn't do WBR because our oncologist and the folks at the pallative station in our hospital told us he wouldn't benefit from it and it would just be a additional burden for him. He would have to stay two more weeks in the hospital for the radiation treatment and maybe just get a few weeks more to live. He has multiple mets, including one "big one", in the brain which have bled last weekend and started growing only 5 weeks ago (last CT Mid September didnt show any brain mets). He is in the hospital since last monday. First days were hard (could barely speak and concentrate, didn't remember much, bedridden, was very very confused, slept very much, did barely eat and drink, karnovsky 20%). His condition is now a lot better (maybe thanks to cortison and pain meds), he is able to have a conversation, does eat and drink very well (even beer and wine!), he even is able to walk some steps (with someone helping him a bit). Sometimes he is still confused and talks about strange things and his short-term memory is very bad. But all in all he is now in a suprisingly good condition. He will leave hospital tomorrow and we can bring him home.

He doesn't get any cancer treatment at the moment. His first and last Nivolumab-Infusion was 4 Weeks ago @ 3mg/kg. Our Oncologist says it will not help him anymore and since he has now multiple brain mets (plus mets nearly everywhere else) it wouldn't help fast enough if it would help with brain mets at all.  Plus, he thinks that the side effects (he was very short of breath after his first dose) would be a additional burden now.

Should i try to convince him to give him at least one more infusion with for example at least 1mg/kg to lower side effects? I really have a hard to just not do anything now. Another doctor who visited him in the hospital said he could have even "some months" left (if the mets don't decide to bleed again!) because his blood test results were pretty good and his general state has improved so much in the last few days... 

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Anonymous's picture
Replies 3
Last reply 10/27/2015 - 9:06am

Hi All,

I recently posted about a strange side effect from Keytruda that I started having about 6-7 months into treatment. Cramping and soreness all over my neck and torso with severe movement restriction. My newest scans showed a further shrinking of the tumour in my lung to 3 cm x 1 cm and my bloods were all good although the inflammation markers were a little high.

I have been put on steroids for a week- 25 mg prednisone and it improved a lot. Now we are weaning me off 5 mg per week to see how I go. We will not continue with the Pembro until we have it under control and i suppose there is a chance that they may not put me back on unless the cancer starts to grow again... scans again in 3 months. My doctors said there are cases where the drug keeps working even after it has been stopped and they are hoping that in my case.

Has anyone else had to stop Keytruda and go onto sterooids because of side effects, and did your cancer start to grow again after an initial good response? How long till it started to grow again?



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mdoh's picture
Replies 5
Last reply 10/26/2015 - 9:58pm
Replies by: kylez, mdoh, Kim K, Christine.P, Jubes

Hello all - I was diagnosed with stage 2a melanoma in June.  Oncologist did a baseline CT scan in August and saw some spots on my lungs and thyroid, so I'm going back for another CT scan/ultrasound in early November.  Scanxiety is building.  My question is - Do I need to get my yearly mammogram if I'm getting these CT scans? Would prefer to avoid any unnecessary radiation.

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triciad's picture
Replies 6
Last reply 10/26/2015 - 6:50pm

Does anyone know if Keytruda crosses the blood-brain barrier?  

Thanks for your help!


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Anonymous's picture
Replies 2
Last reply 10/26/2015 - 6:33pm
Replies by: Anonymous

My sister was diagnosed with stage 1A melanoma, 0.6mm clark III (3) mitosis <1mm2, her primary was located in the middle of es left clavicle. She had the WLE last november 2014 but was not done the SLNB. Every day I keep thinking about a possible recurrence, my fear is latent each day, and continue reading and instructing myself about this terrible disease. Every day I check this forum in search of stories, stories like my sister. Many people have told me it's unlikely the melanoma has metastasized to lymph nodes or other parts of her body, that she is low risk. I have lately seen some stories that even with stage 1a or a thin melanoma, have been found melanoma cells on the lymph nodes or after few years have passed from stage 1 to stage 3 or 4.
I do not know what happen to me but every time my sister tells me that something hurts her or when she get sicks I always associate her sickness with melanoma.
What could be the symptoms of a recurrence, either a local or distant recurrence? How could I know if we are present of a recurrence?
Pardon my concern and I hope you can help me.
Thank you and I pray for you all, and hoping a final cure could be found very soon!!!!

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BrianP's picture
Replies 6
Last reply 10/26/2015 - 6:15pm
Replies by: BrianP, kpcollins31

Can anyone recommend a good melanoma surgeon.  My surgeon left Duke for a position in Texas.  I'm located in North Carolina and would like to stay in the Mid Atlantic area if possible.  The operation will probably be fairly complex to remove two tumors near my liver.  Thanks for any suggestions.


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mrsaxde's picture
Replies 6
Last reply 10/26/2015 - 12:44pm
Replies by: arthurjedi007, Gene_S, Sarahrenahan, Anonymous, mrsaxde

I walked into the bedroom this morning to find my wife watching one of those web ads about acetogenins. Since being diagnosed with melanoma in 2013 I have looked at alternative treatments to supplement the treatments the doctor has prescribed. I've tried Tagamet and mushroom extract in addition to Yervoy, and now Keytruda, with the blessings of my doctor. Both of those substances have been found to be of benefit for at least some melanoma patients.

Now I have a healthy dose of skepticism about these things on the internet, but I grabbed my laptop and googled "acetogenin." I was amazed to find that there are at least several scholarly papers that have found that acetogenins have anti-tumor properties. They apparently work on a cellular pathway that starves tumor cells of nutrients, or something to that effect.

In the months I've been hanging around this message board, I have never heard anyone else mention them. Apparently the primary source for acetogenins is Pawpaw extract. Has anybody tried them, have any experience with them, know anything about them? Like I said, I'll try anything that could possibly work as long as my doctor ok's it. And I intend to ask her about acetogenins when I see her a week from Monday.


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emagdnim83's picture
Replies 4
Last reply 10/26/2015 - 8:37am

My father is currently in the hospital, pallative station, because he has multiple (bleeding) brain mets. He can speak but forgets much, can't remember some names and is generally very confused (doesn't know what some everyday items are for and so on). sometimes it is a bit better but he isn't able to walk and is now bedridden and needs Nursing.

Oncologist said we could do a WBR but doesn't think that it would help him and would just be a additionally burden for him. It would give him a bit of time but he is sure that it would not be enough time to get his nivolumab treatment to work (he received just one dose 3 weeks ago). Furthermore the damages his brain already got due to the bleeding brain mets would stay like this and not get any better (is this true?). 

So we decided to not do a WBR and organize a pallative care for him at home. Oncologist says he has maybe 1 to 4 weeks left and we would like to have him home.

In the end, i am still battling with our decision, i am always thinking of maybe the WBR would give him time to benefit from nivolumab? May be he would be one of the few where it starts to work even after the second treatment? Oncologist said that even with WBR he maybe would die because of his lung mets which have "exploded" since he stopped Zelboraf. He has mets in liver, pankreas and spine, too.

I'm lost and thankful for every advice i can get. Thank you.

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Millykamp's picture
Replies 5
Last reply 10/25/2015 - 5:11pm

Hello everyone 


I had an CLND done a few days ago and one of the, came back positive. Anyways I am dealing with numbing in my arm and muscle spasm.... Is this always common? 


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scottr's picture
Replies 9
Last reply 10/25/2015 - 5:40am
Replies by: stars, Anonymous, geriakt, scottr, CHD, lmhl

Hi All!

I just recieved a diagnosis of Melanoma PT1A. Breslow .32, clark level 2, TIL -non brisk and the part that has me concerned was regression. Pathology report said regression present - involving over 75% of lesion. I keep reading differing opinions on this but many seem to think this has a significantly worse prognosis.

I dont have a family doctor just went to local med clinic. I was referred to a oncologist and am waiting to meet on Nov 12 in Ottawa canada.

So far a little dissapointed with care in that I presented on Sept 26th. So far I have not had any doctors perform a skin evaluation or perform lymph node palpation. I noticed a week ago that I have a small lump in my neck. My wife checked also and agreed that she felt something too.

Kinda just sitting here and sweating it out. I hate being paranoid and I know path report was pretty good except the regression aspect.

Any advice?


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