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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Hi Guys, just wanted to get this out there because I had a lot of trouble locating this information. I am currently receiving Opdivo and had severe diarrhea and stomach issues with it. My oncologist put me on steriods but everytime I came off the symptoms returned, until a nurse friend of mine suggested trying Immodium! It worked!!!! I take two immodium bascially every 24 hours, a third if needed, and I'm great! I can eat and drink anything I want and my oncologist is A-OKAY with this! 

Some background on me: I am Stage 3B, first diagnosed in Oct. 2014 with melanoma in my parotid gland (neck behind ear), I had the gland removed along with a neck dissection to remove all lymph nodes which came back clean. We did 25 rounds of radiation just to be sure. Thought we were in the clear when in April of 2015 I woke up with facial paralysis on the right side. ER doctors thought it was just Bells Palsy but because of my history did a CT just to be sure. Low and behold the melanoma had spread to my brain and was bleeding. A crainitomy later I was feeling great, slowly my smile came back and all was right with the world. I did one round of gamma knife radiation and flew off to London and Spain to celebrate! Once in Europe I became serisouly ill and couldn't eat or drink anything. I quickly lost weight and was getting sick all the time. I came back to the USA and underwent both a upper and lower endoscopy. They located a polyp and removed it and sent me home. After an uncomfortable 24 hours I went back to the ER where they found A LOT of air trapped in my chest and knew the perforated my bowel. With the fear of a colonostomy bag in my future a wonderful surgeon was able to repair my perforated bowel but also found several large tumors requiring him to remove 20 and 30 cm of my small and large instestines. I've since healed and had 10 treatments of Opdivo, with the only side effect being the diarrhea. At first it was 6,7,8,9,10 times a day, anytime I came off steriods. On the random advice of my friend in nursing school with no Oncolgy experience I took immodium and BAM! it worked! I really hope this helps some other people out there on Opdivo or Yervoy. From what my oncologist has said the diarrhea can be even worse on Yervoy. But perhaps the immodium can help just the same for any folks on that medication. Also one last piece of advice I prefer the CVS or Walmart brand gel caps, they are 1. cheaper (wooohooo!) and 2. the name brand dissolves in your mouth immediatly and it chokes you going down leaving a horrible taste in your mouth, so just a quick FYI there! Hope this helps someone else out there! 

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AshleyS's picture
Replies 9
Last reply 10/29/2015 - 1:48am

Hey folks,

Has anyone on Opdivo/Keytruda found any links between diet how you're feeling? I'm having one of my "bad days" today - lots of cramping and diarrhea. I've been trying to make a connection between my diet and these "bad days" but I haven't found a link. I also don't see anything that I'm doing differently on the good/great days. I haven't cut out any foods and eat a variety of fruits, vegetables, meats, and grains. I don't drink alcohol and occasionally eat sweets. I go for walks daily, work out with a trainer twice a week, and constantly play with/chase my two little ones. I get a fair amount of rest, but have a baby who wakes frequently at night. I know that treatment may not alway be easy, but if others have found ways to make it easier, please share!

FYI, I'm not looking for a way to cure my melanoma with diet. 


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Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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Angsta39's picture
Replies 7
Last reply 10/28/2015 - 1:14pm

I was diagnosed with Stage IIIB after two surgeries to remove the intial cancer from my leg, a sentinal lymph node biopsy, and having the rest of my lymph nodes removed from my right groin. When I went to see my Medical Oncologist, she offered me three treatments. Interferon, Peg, or Biochemo or just to watch and wait. She explained that none of the treatments she offered would change the 60% chance of the mel coming back within 5 years, so I decided to just watch and wait instead of dealing with the side effects she told me I may have from the treatments. I have tried to find data on each one of these treatments and if they really work or if I'm better off keeping to the watch and wait. I gave read threads where people have been NED for years from doing these treatments so it makes me question myself and my doctor. Could anyone who has been through these treatments please share your story with me so that I can be more educated on all of this. Thank you in advance for your help.  

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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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