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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Replies by: jenny22, jamieth29, geriakt


Great news! This evening the FDA approved ipilimumab (Yervoy) as an adjuvant therapy for Stage III melanoma patients who have had their tumors removed through surgery.This is the first new adjuvant treatment in 20 years! The MRF issued a statement with more information, which you can read by following this link:


Lauren - MRF

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Christine.P's picture
Replies 6
Last reply 10/29/2015 - 11:39pm

I start my first dose of the combo on Monday and was just wondering how long the treatment takes. I've seen one person say the treatment is 2-1/2 hours long and wondered if that varies by person and dose or if that's pretty standard.

Also - are all four doses of the combo the same duration? I feel lucky that I get to try this new combo, but am also getting nervous. I know side effects vary quite a bit, but the waiting to see what will happen to ME is a little nerve-wracking. I try not to think about it most of the time, but it does creep into my thoughts. 

Thanks to all of you on this forum. I appreciate the honesty, candor, and support shown to everyone who posts. 

Christine P. 

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Anonymous's picture
Replies 3
Last reply 11/9/2015 - 11:06am
Replies by: Anonymous, CHD

Hi, just wanting to see if there is anyone out there with vulvar cutaneous melanoma?  I have seen posts from several with mucosal-type but wondering about cutaneous.  Would love to hear your stories and what you have been treated with, and how you are doing.  Thanks for sharing!


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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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Hi All, 

In 3rd week of taf/mek combo. Having low fever (99-100), chills, dizzy and fatigue. Think I may call onc to report to see if there is something to ease the fever/chills occuring during day and night. Has been consistent the past 3 days/nights.  Currently can only treat with Tylenol because of meds I take for auto immune disease.

Trying to stay optimistic telling self meds are working which is why I'm having side effects! I'm worried he will lower dose which I dont want to do-I can manage, if I have to. Does that make sense?

Thanks for any input!

Do not fear tomorrow, God is already there.

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Debbieamccoy's picture
Replies 3
Last reply 11/2/2015 - 10:10am

I'm stage 4 with mets to liver getting yervoy and nivo second round next week. I want to plan a surprise trip to Disney for my children and grandchildren but afraid to plan ahead for April . So far I feel great except for nausea . Anybody with suggestions 

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braunerk's picture
Replies 10
Last reply 10/29/2015 - 10:48am

FDA approved Imlygic (t-Vec) today

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1derdog's picture
Replies 8
Last reply 11/2/2015 - 10:24am

My husband had two Keytruda infusions & his tumor near his pancreas increased. He had another four infusions & his scan showed stability, with a slight decrease & no spread anywhere else.  

My question is is this good progress after six treatments. His oncologist thinks the sweet spot for Keytruda to work is around 10 - 12.  I would appreciate any of your personal experiences and/or opinion.  

Thus board is a heaven sent.  

Thank you

caregiver (wife

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Anonymous's picture
Replies 4
Last reply 10/29/2015 - 11:29am

Has anyone heard from Janner lately?

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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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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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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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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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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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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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