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 7
Last reply 9/24/2015 - 10:52pm
Replies by: geriakt, Anonymous, clthomas2131, kylez, ronald duclos, mrsaxde

Hi there - I am new to the site.  I am starting the Ipy versus Nivo trial soon and was wondering if anyone has been in it / is in it now / is signing up for it?  It is the blind trial so you don't know which treatment you are getting.  I am curious about the dire sounding side effects and what experience anyone has had dealing with them.  I have been told they are auto-immune related - colitis, hypothyroidism, pituitary issues, etc.  Thanks so much for any thoughts.  

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Millykamp's picture
Replies 7
Last reply 9/24/2015 - 10:03pm

Well got the phone call 


the SLNB showed melanoma cancer...   Can I ask what will I be expecting?  I go see the doctor on Oct 7th and get set up for another surgery 


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holy moly melanomy's picture
Replies 4
Last reply 9/24/2015 - 4:44pm

Hello All!  I am wondering if I can pick your brain on something.  How do you get doctors to have a little bit of concern about your health?

Along with Melanoma, I also have Ulcerative Colitis throughout my entire large intestine (DX 2007).  The last couple of years I have had this pain that I assumed was the U.C.  July of this year I had my 2 year colonoscopy and everything looked better than it has in years - no ulceration, very minimal inflammation - which is great news, however it doesn't explain the pain.

Pain is all day, every day.  Mainly lower right side, achy at best - sometimes more crampy.  A few times a week I will get an intense stabbing pain that luckily only last a few seconds.  I can actually feel my intestines throbbing during "bad days". 

Following the great colonoscopy, I went back to my PCP (Kaiser) and informed them about the pain.  She suggested a PAP and an ultrasound to check my internal lady bits: uterus, fallopian tubes, ovaries and bladder are tip-top shape.  Back to the drawing board.

Two weeks ago, I passed blood. The following day, I got up to go to the bathroom and couldn't stand up straight because of the pain - I thought I was going to collapse.

Last Friday I saw a Gastro doc who ordered several blood panel tests and everything is in the normal range except for my lymphocytes being out of range low - some others are right on the cusp of being either too high or two low (examples: C-Reactive Protein, Basophils & RBC Nucleated).  She also gave me an anti-spasmodic to take and she assured me this would help with some of the pain. 

Fast forward to almost a week later - not really helping.  Tuesday morning @ 3am I was lying in bed and had the sharpest pain that I have had yet.  I wrote the doctors and told them what is going on and asked for a scan or something (which I'd love the pill camera just for the damn science of it).

I got a response this morning saying that "it's likely I have IBS".  I cried.  IBS doesn't bleed.  IBS doesn't wake you from a sleep for pain.  How do I get them to be concerned??!

"Everything happens for a reason"


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Replies by: Scooby123, Bubbles

It's a long story for me but when had melanoma removed in 2011 but GP kept saying for a year it was nothing I was then treated by a surgical team who said if it comes back it would by by your lymph nodes. We will check you every 3 months for 5 years. I was still not convinced it was clear but they said it was. I was checked every 3 months and on my 4 year i did on times attending checks complaining some thing was not right , but was told it will be my arthuritus playing up and everything was ok. I had a bowel problem which when I told my doctor who I was under he said well we will do a one off scan. Not sure he wanted but due to my other issue he did one. Then going to the appointment for results was told I had 3 tumours on liver 2 on lungs and lymph node involment . I was told no cure started me on ippi cus I do not have the braf gene. Ippi reduced tumours by 50% so I would think 1.5 would be my biggist tumour. Does anyone have surgeons that would remove them now they have shrunk or is it watch wait. I am having a second opinion at another hospital but advice from you guys would be appreciated . I feel I do not trust them anymore after what I have been through. Hope this makes sense 

Scooby ❤️

Just to add I was right from the start I was not clear and it went straight through my body not my lymph nodes. I had six mels at the bottom of my back inside my body not on skin .




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AnitaLoree's picture
Replies 1
Last reply 9/24/2015 - 11:10am
Replies by: _Paul_

Thx Paul for posting yesterday re your Keytruda fatigue, taking a break, now trying modafinil with good results.  Fatigue from Keytruda bugs my husband too so spoke w our oncologist @ today's exam/infusion. He says the latest is a tweaked form: Nuvigil (armadafinil), apparently less SE's/interactions.  Is being used in several glioblastoma trials bcs fatigue such a big problem for glioblastoma folks. (Didn't get into if Kaiser is involved in any). We will pursue this next month. Husband's celebrating 1 yr anniversary on Keytruda and continues PFS. So grateful for this extra time and don't want to mess anything up! Will tread carefully but would be great to have some energy again. Peace, perseverence and +++++mindset to all you tough mel warriors. A.L.

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my son jake, 18, had his scans yesterday. He has been on keytruda for 3 months now. He looks amazing! All visible tumors are gone. He has a heavy tumor load w 20 in his liver and also lungs. Plus many in his spine, ribs, femurs, muscles etc. the new scan showed many bone mets gone. His spine only had 2 left. His ribs are almost clean, femurs too. His lungs and liver have stable mets with less activity. He did get one new tumor in his chest. 

My question is, does this mean Jake has years to live now? I mean he has no side effects to speak of. He plays tennis everyday and is a very healthy kid--other than stage 4 Mel!! 

Anyway, Jake is truly my miracle. I hear in my mind daily, "I answered your prayers". No matter what happens from here I feel so grateful! Jake is back to his life! 18 is a great time to live. 


kerri-mom of Jake

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BuzzBrown's picture
Replies 6
Last reply 9/23/2015 - 9:45pm

I have recently had wide local excision and lymph node removal. My DR reported that the cancer had not spread to my lymph nodes. My Breslow thickness was 2.65. My Clark level was IV. There was no ulceration. Mitotic rate of 2.  I go back for a surgical follow up in a couple of weeks.  I feel at a loss right now. I'm not sure what to do next. I almost feel that not enough has been done. I've not had an MRI and that makes me nervous. What if the cancer skipped that lymph node they took out and went somewhere else?  Also, to my knowledge, they did not do any genetic mutation testing on my cancer. The doctors really haven't told me much of anything other than the cancer hadn't spread. Should I be asking for additional treatment as a preventive measure or even a second opinion?  I just don't feel reassured yet that everything has been addressed.  I do have a family history of cancer. If anyone has any advice on questions to ask or other avenues to pursue please let me know. I just want to make sure all my bases are covered. I don't want to go back in 3 months for a checkup only to find out something was missed because I wasn't aggressive enough in my own treatment.  Thank you!

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ldub's picture
Replies 3
Last reply 9/23/2015 - 7:24pm

For those of you in Michigan or close to it, I just received a mailing for a free melanoma seminar at UM Ann Arbor on October 3.  It looks like a presentation that is being put on in conjunction with AIM at Melanoma.  Sessions include National Opinions on the State of Melanoma, Surgery in the Era of More Effective Therapies for Melanoma, Keeping Up with Changing Treatments for Advanced Melanoma and Importance of Clinical Trials.  It may be useful for anyone recently diagnosed and/or their families to gain a better understanding about managing this disease and learning about the most current treatments.  To register, the flyer instructs you to go to and click-on Symposiums.

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Never Gonna Stop's picture
Replies 21
Last reply 9/23/2015 - 4:02pm

As I was approaching the start of my interferon therapy (for stage 3A), I was troubled that there were seemingly few stories out there of people tolerating the treatment well. As I'm pretty deep into my treatment now, I wanted to share my experience to give hope to some of you earlier in your journey.

I have done the month of infusions, and I am now in my 5th week of injections. I'm not going to say that it's been a fun time, but interferon has not been the terrible monster that I had feared it would be.

The treatment is a constant series of peaks and valleys, but I'm surprised that the valleys aren't as low as I expected. Personally, the flu-like symptoms tapered very quickly. I felt horrible the very first night, kind of crappy the second night, but after that, in general, I rarely woke up at night from discomfort. The biggest problem became the burning sensation in my skin and the "pins and needles" feeling, but those have tapered off as well. I received 2 weeks off before my injections, and so the flu-like symptoms returned for the first night, but immediately tapered afterward.

I had 2 days of nausea during my infusions, but none sense. I have frequent stomach "uneasiness" on my injections, but it doesn't progress to bad nausea. It can be hard to get moving in the morning after my injections because my body feels a little "heavy." Sometimes I have some pretty bad joint pain, but Advil is a lifesaver.

I do warn to keep on eye on the mental side effects. I feel like my temper is shorter, and I'm slightly more irritable, and sometimes I feel like my motivation to do things is down. All of these things come in waves though, and I often feel COMPLETELY normal.

Going into interferon, I decided to be extremely proactive about my health. I slept more, decreased my stress levels, renovated my diet (healthy lean meats and veggies...cut out sweets and processed carbs), and I started a nutrition system. Feel free to message me with any questions on the diet or nutrition system, but I truly feel like living as healthy as possible has helped me to thrive through this interferon treatment.

Everyone is different of course, but it is possible to take this beast of a treatment head on and do very well! And, so far so good...I had a PET scan two days ago, and it was all clear!

I have cancer, but cancer doesn't have me!

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arthurjedi007's picture
Replies 22
Last reply 9/22/2015 - 9:41pm

I'm kind of upset. Maybe it's the fevers and tumor pains from not having pd1 in so long. I dunno. I wanted to share my md Anderson experience and see maybe this is normal for them and I'm just silly for expecting more. I dunno.

On the 4th I finally made it to md Anderson. I was excited to finally be in the number one cancer place. Kind of neat how their sign marks through cancer.

Went to the melanoma waiting area. Was only a couple patients there. Did the typical fill out forms and wait 20 minutes or so.

Got called back and did the typical registration. Then went back down and way over and did the typical blood draw.

Then back up to the melanoma waiting area. Got called back for the typical vitals and small room. The first nurse was the typical optional trials for tumor and blood bank research.

Second nurse came in and asked some questions about my history.

The doc's head nurse comes in and asks questions and does a physical exam. She says if my kidney tumors are a different cancer they cannot treat me. She also said she will not bother having the trial nurse see me. So when she leaves I'm in tears wondering why I came here. She also gave me a card with the only number to call is the melanoma number which I already had.

Then the doc comes in. The first thing he says is he wants to do multiple biopsies and genetic testing to try and figure out why the medicines haven't worked for me. He also said pd1 and things only work when the person already has the cells in them that can beat the cancer. He also talked about what I think is some type of til and some other things. He wants scans right away. The biopsies right away. And to start the keytruda il10 trial asap. So I'm thinking finally I'm impressed and everything is going to be great.

So the trial nurse talked to me and said due to the holiday she couldn't get the trial started on the 10th but she will shoot for the 17th. She gave me a card how to call her. Also the doc came back and said he would like me to do the optional biopsy part of the trial so he can do more testing and studying of my tumors so I did that.

On the 5th they did a ct and head MRI. Except they didn't do the MRI contrast since that almost killed me at NIH.

The 6th to 8th I was too sick with fevers and feeling awful so couldn't go home. Called the trial nurse on 8th and she said there was lots to get done to make the 17th happen.

On 9th the business financial lady called saying it would be 7 to 10 business days for approval and they just submitted it. She said nothing could happen until then. I start to say not even the doc's biopsies but she didn't let me finish and said nothing can happen. So I'm in tears again.

On 10th I left a message with trial nurse we are going home. I could not get rest in the hotel and only got 2 hours sleep plus the fevers so my parents were getting worried. Trial nurse says she'll keep trying for the 17th. Suddenly someone calls about the biopsy so scheduled that for 21st.

Back home with fevers and feeling crummy. Plus lots of pain from tumors since I'm overdue for my pd1. On 14th trial nurse ok getting my xgeva at home but if I get pd1 might push start date. So opt not to get pd1. Only thing holding up trial is financials so she gives me their number and wants me to call her if I hear it is approved. I call them and still not approved. She also said she would push the start date to the 24th.

On 16th I call financials a couple times and it gets approved. I leave message with trial nurse financials are approved. She calls back and says the treatment area is overbooked on the 24th. They have 58 patients that day. Also for some reason they aren't letting her schedule it for the 25th although they aren't overbooked that day. I say something to the affect that's odd. This is md Anderson. The number one cancer place in America. She didn't know quite what to say.

Soooo. That's my experience with md Anderson so far. I really hope things get better. If not I'm not going to make it much longer like this. Too many tumors and pain and fevers and keep losing weight. I'm sorry I sound depressed. I know others are going through more than me.


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Rita and Charles's picture
Replies 2
Last reply 9/22/2015 - 8:23pm
Replies by: wasserd, marta010

Hey there, my husband has been having great results on the braf combo trametinib/tafinlar - from his June PET to his late August CT, his lung tuomor shrunk by half, lymph nodes regressed and no new tumors in his lung. Yay!  Recently though his left ey has gone completely fuzzy, he can't see out of it.  After going to his opthamologist today he learned he as Iritus - evidently 1% of people have eye side effects.

He has been prescribed a steroid eye drop, we haven't heard from his oncologist yet if this will in anyway affect his tafinlar usage. We don't want to stop or stall using the combo - it is working.

Any similar findings out there??

Thanks, Rita


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JakeinNY's picture
Replies 10
Last reply 9/22/2015 - 8:15pm

I haven't been on our site for about 2 years, but I'm so happy to find out today that my PET/CT scan was negative. I'm now 8 years NED since my surgery performed by Dr. Dennis Kraus (thank you Dr. Kraus!) in New York. Although my surgery was done at Sloan Kettering, I am tremendously grateful to my oncologist, Dr. Anna Pavlick at NYU, for the fantastic advice, warmth, and general down-to-earthness she has always shown. I would tell anyone with melanoma to go to Dr. Pavlick at NYU. Her and her staff are the best and they strictly deal with melanoma. If you don't love dealing with Dr. Pavlick, you will not like dealing with any doctor! I thank God that I chose to go with her after my surgery back in 2007.

Do the best you can.

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Anonymous's picture
Replies 0

im donating zelboraf two boxes (vemurafenib) anyone interested send me an email and ill send you a response, it would have to be through my oncologist, ok? just to check you have been prescribed the medicine



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Anonymous's picture
Replies 0

im donating zelboraf vemurafenib two boxes, anyone interested? leave you email and ill send you a response there

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Millykamp's picture
Replies 5
Last reply 9/22/2015 - 4:55pm

Made a post and have NO CLUE where it is..  


Ok ok I got an embarrassing question to ask 


I had WLE and SLNB done 5 days ago 


my WLE doesn't hurt at all  my SLNB does., I still have a dressing on it and some kind of derma bond tape of some source. They said it to stay on till I see the Dr. a few weeks 


The SLNB was done on the shoulder armpit area not quite under the armpit. Anyways. It hurts, even on my side of the breast.  I am wondering is it because do they cut deep? Cut into the nerves??   




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