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 3
Last reply 9/15/2016 - 10:23pm
Replies by: Anonymous, miaka618

Hi all-


I have a question in regards to PET scan results.  I was diagnosed stage 3B earlier this year.  Post CLND right groin.  Currently in clinical trial and have received 5 doses of Keytruda thus far.  On my recent PET scan it was all clear except for the following note:

FDG uptake in the right adnexa likely 

reflects a functional ovarian cyst. This finding is centered on 

CT transaxial slice 158 where the SUV maximum is 5.23. This is a 

new finding since the prior PET/CT scan. The area of abnormal FDG 

uptake measures approximately 11 x 10 mm. There is no new FDG 

avid lymphadenopathy in the groins, pelvis, retroperitoneum or 

the mesentery there are no FDG lesions in the liver or spleen. 

My oncologist has initially mentioned that I will not need further follow up of this since this can be expected with a premenopausal woman.  I am awaiting follow up as I have emailed for further clarification.  The SUV seemed high to me.  I don't want to jump to conclusions however I do want to be very aggressive in investigating.  Thoughts?  



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Anonymous's picture
Replies 1
Last reply 9/15/2016 - 9:58pm
Replies by: Anonymous

Hi everybody:

I was wondering whether you know of any good mole mapping or fotofinder services in Los Angeles or Southern California?  Also, I was wondering if these places take patients that are not high risk?

Thank you!

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Hukill's picture
Replies 6
Last reply 9/15/2016 - 7:12pm

My first 44 months(was supposed to be only 6 months) in the Army my face was exposed to radiation almost on a daily basis with plastice safety glasses as my only protection. Ten years later I had my first basel cell while still on active duty. That was in 2002 and until June of 2015 I had 15 basel and squamos cancers removed from my face area. In June of 2015 I had 2 melanomas, one on my forehead and a stage 2B to the lower left of my crown. The stage 2B took 3 surguries and I was left with a huge hole in the back of my head. The PET Scan was negative. On June 8th this year while drying off after a shower I felt a knot in my lower left neck and immediately I knew what it was. That was on Friday. Monday morning I called my onocology surgeon and he asked If I could come see him then. I live 3 hours away from Audie Murphy VA Hospital so I left to go see him. He scheduled me for surgury the next Monday and a PET scan that Wednesday. The Pet scan results came back before my surgury. The results were not positive on the knot in my neck but had multiple tumors in both lungs consistant with melanoma that were not there in my last PET scan a year earlier. The knot in my neck was matatisized melanoma. The diagnosis was stage 4 non-surgical mataisized melanoma in both lungs. I have had more than my share of horror storys dealing with the VA over the years but with my cancer they have been excellent. I am the first veteran at Audie Murphy hospital to receive the yervoy/opdivo combo mainly because I am the first veteran whose overall health was good enough to risk the side effects. The cost of these drugs for my treatment is $800,000 and had to be signed off by a finace board which only took 2 days. Within  a month of my diagnosis I received my first dose of drugs. I had my 4th and last combo on 9/9/2016. I now have 4 doses of opdivo then back to the combo. The VA has really came through on my treatment. Before my first treatment they gave me presciptions for steriod cream for the rash and steriod pills  that I could take if serious side effects developed but could only take I they told me to. I have been very lucky on side effects. After the first I did get a rash on my arms, chest and shoulders but only 3 or 4 spots itched and no burning. The steriod cream took care of the itch. I had a lot of fatigue the firat 4 to 5 weeks and ran fever for 6 weeks which is just now going away as it comes and goes. I took motrin every 4 hours to keep it under control. I did not have an appetite the first 4 or 5 weeks and lost 27 pounds. I tell people nothing beats the melanoma diet, all you have to do is wake up to lose weight. I have continued to work with usually working 3 to 4 days a week. I spent 3 days in the hospital running test for infection due to the fever but it was determined the fever was just a side effect and no infection. My dr did a CT scan at 8 weeks due to several chest xrays looking good. The scan had several tumors so small they could not determine if they were gone or not, 3 tumors were smaller and 2 were slightly larger. My guess is that 27 days passed between my PET scan and my first dose of drugs so I assume the tumors had continued to grow and have probably skrunk. I think I have been luckier than most on the side effects as I have been mowing the yard, and still doing all the things I did before my diagnosis. I am looking forward to my scan at 14 weeks.

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TeachinKansas's picture
Replies 4
Last reply 9/15/2016 - 1:32pm
Replies by: jbronicki, Joycem, debwray, Anonymous

I am having a wide local incision and a sentinal node biobsy done next Friday.  I REALLY want to go see my son compete on Saturday.  What are the chances I will feel up to it?

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rabbits68's picture
Replies 14
Last reply 9/15/2016 - 12:22pm

After 17 months on Mek combo, it has outsmarted the melanoma. Scans showed progression back into the bones. So I am being put on the Ipi/Nivo combo. Anyone care to share experiences with those drugs?
I know God's got this and I keep thinking about a song that says Learning to Lean on Jesus. That is the only true source of strength.

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Anonymous's picture
Replies 2
Last reply 9/14/2016 - 10:15am
Replies by: Hukill, Treadlightly

i recently had surgery to have a clarks level IV removed and just got the path back have not been to doctor yet since surgery but in my path report it says reperative changes consistant with previous operative site,lentigious,incidental findings, margin free . thats all it says what does this mean??? whats incidental findings


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Anonymous's picture
Replies 5
Last reply 9/14/2016 - 8:45am

Has anyone here ever had a baby after being diagnosed with melanoma? Any reoccurrence? One dr told me no more babies and the dermatologist said she had never heard of that and she didn't see a problem with it. My husband and I want a big family and it is breaking my heart thinking of not having more kids. Please any advice or links would be helpful! I've been researching so much but can't find much information!

thanks everyone in advance! 

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Hello everyone! I am curious if anybody out there has been in this clinical trial? I am a Stage 4 patient who completed 4 doses of Ipi ( October 2015 - December 2015) and was not a responder. I did 2 follow up Pet Scans after treatment on Dec 17th and January 28 which showed my main tumor (chest wall) was still growing..and now I have several subcutaneous tumors around my upper torso, but mainly seeming to favor my left side of my body. I have a great melanoma specialist who has been working with my husband and I but is now recommending I move forward with a clinical trial. I shouldn't be surprised at how invasive the pre-testing for a clinical trial is but sometimes it feels overwhelming. I handled the Ipi really, really well with very little side effects besides some minor itching but I always get nervous when it comes to new drugs. This trial includes taking the pills (epacadostat) every day and the infusion of nivolumab every two weeks. Has anyone been through this? Side effects? Reponses to the treatment? We've been going through this for almost a year and I feel like we're starting to grasp at treatments because we keep getting let down every time I have a scan update. Very frustrating but I'm also very determined to WIN! any input would awesome! Many thanks and love! Niki

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Aida Ballesteros's picture
Replies 8
Last reply 9/13/2016 - 11:17pm

My dad had just being diagnosed with in situ melanoma on august, he got the mole and some good skin removed, but i am worried sick of the chances of the cáncer coming back as in a mole or something else, do you think we should make an appointment with a melanoma specialist for some extra tests? What are your experiences with in situ melanoma?

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Marilynliz's picture
Replies 1
Last reply 9/13/2016 - 8:32pm
Replies by: jennunicorn

I am just starting my journey. I am looking at either Wake Forest of UNC. I would also appreciate any oncologist recommendations. I actually live closer to the Hickory/ Mooresville/Statesville area but would be willing to drive the distance for comprehensive care. Any recommendations would be appreciated. Thanks.


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Kim Tucker's picture
Replies 10
Last reply 9/13/2016 - 12:43pm


After countlss hours of researching and reading your stories, I am adking for input on my 63 y/o father.  Please see history below.  I appreciate any and all comments, thoughts, similar personal stories, etc.  Thank you all~
Treatment History

August 26, 2016~Upon surgical excision (with anesthesia) of scalp lesion performed by Dr. Arrington-Penninsula Plastic Surgery, Salisbury, Maryland, it was learned that unlike the numerous other removals of basal and squamous cell cancers my father had undergone, this was in fact Melanoma. 

Pathology : Superficial Spreading Melanoma
Thickness Greater that 6mm
Mitotic Rate 4.1/mm
Present Perineural Invasion
Pathologic Stage: pT4a

Margins were not clear and both peripheral and deep margins were involved by invasive melanoma.  

8/30/16 Seen by Dr. Anthony Tufaro-Johns Hopkins Kimmel Cancer Center
Currently waiting on schedule of MRI and CT scans to determine if present in organs. Sentinel Node Biopsy scheduled in approx 4 weeks (earliest possible) with additional removal of disease to aquire clear margins.  This will also include skin graft. 


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rabbits68's picture
Replies 3
Last reply 9/13/2016 - 12:01pm
Replies by: rabbits68, JoshF

I am now 17 months into Mek combo and have had very little issues until this month. Started as pain in back and legs that went away and now seems to be a little more persistent. After 4 days in a row, decided to call the oncologist. I am having CT and MRI, am praying this is nerve or muscle related and not bone Mets (which I had before). I know the statistics with Mek and am concerned it has stopped working, but it seems like a sudden onset. This makes me anxious.

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Anonymous's picture
Replies 5
Last reply 9/12/2016 - 10:56pm
Replies by: JerryMary34, Ed Williams, Bubbles, Anonymous

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jenny22's picture
Replies 3
Last reply 9/12/2016 - 9:50pm
Replies by: Anonymous, jenny22

Hi to all, and Kerri in particular-

I found myself thinking about you, and Jake today......

Wanted to send good thoughts and HUGE well wishes for his scans tomorrow.  I am sure you must be having BIGTIME "scanxiety".

Keeping my fingers and all other bofy parts crossed for some good news for Jake.




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