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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Socks's picture
Replies 2
Last reply 5/27/2014 - 4:15am
Replies by: JerryfromFauq, hbecker

I've been away for awhile trying to get my life back on track and dealing with my mom being sick.

I've been told I'm technically stage 3c but Dr. Lao (U of M Melanoma Clinic) said that my prognosis is better than that would normally indicate. I did have an 8+ mm nodular melanoma removed but it had no satellite lesions or anything; there was no ulceration; 4 lymph nodes came back positive in the SNB, but one was 10%  cancerous, two were 5%, and the last was ~2%. The 26 lymph nodes they pulled out during the dissection all came back negative.

My tumor was tested but came back BRAF negative, so I didn't qualify for one of the local ipi trials. The other was ipi vs interferon double-blind, and I do not want interferon. After a great many scans, I seem to be NED; I go for my first follow-up exam July 11, and I'll alternate between driving out to Ann Arbor to see Dr. Lao (as I will in July) and seeing my local dermatologist. We're doing wait and watch, pretty much.

I'm hoping for advice on where to go from here. I'm very diligent with my sunscreen (50 SPF even though I know that reapplying regularly is more important) and I have a UPF 50+ sun hat and skirt. Are there other things y'all recommend? Dr. Lao says the likelihood that I'm "cured" and the melanoma never comes back is ~40%, which is pretty good for stage 3c, yes? I just want to make sure I'm doing everything I can to stay NED.

Thanks for your help. :)

"Be who you are and be that well." - Saint Frances de Sales

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Anonymous's picture
Replies 2
Last reply 5/27/2014 - 8:08pm

I was just wondering how many of you are either ned or stable? What Treatment worked for you? Just wondering how successful treatments actually are?

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brittanyx's picture
Replies 6
Last reply 5/27/2014 - 8:45pm

I'm 19, and a little over a month ago I was diagnosed with stage lll melanoma. Some days I struggle emotionally and mentally. But other days I have positive thoughts and have hope. I registered on this website to talk to people because I think that would help me through this. Anyonne else feel the same?

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My mother was diagnosed with Stage III Mestatic Melanoma last April (2013).  It was originally found in her lymph nodes in her upper right groin area.  They removed 4 lymph nodes from this area last April.  She had 5 radiation treatments following this surgery.  She was then accepted into the Yervoy Clinical trail at the 3mg level.  She started those infusions at the end of last summer but was only able to have 4 of them; the last one was administered at the end of last October.  Her doctor stopped her Yervoy treatments due to the severe joint pain she developed; it was debilating.  She has also experienced severe itching.  She has been on Prednisone since November, starting with a strong dose, down to a maintenance dose now.  Fortunately she never experienced any colitis or digestive issues, but had 1 mass removed from her right breast last October and another one in the same area this past March.  She now has a 2+ inch spot on her liver she will have vascular surgery on in the upcoming weeks.

When she is not on the Prednisone the joint pain and itching returns.

Has anyone else suffered the debilitating joint pain from this treatment, and if so, how long did it last, did it eventaully go away once the Yervoy was out?  She is terrified it will effect her for the rest of her life. 

Thank you!


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Anonymous's picture
Replies 1
Last reply 5/27/2014 - 10:53pm
Replies by: Anonymous

When does Long Term Care insurance come into play versus medical health insurance?

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DUSTILANE's picture
Replies 3
Last reply 5/27/2014 - 11:03pm
Replies by: SteveH230, GrammyM, POW

Can anyone tell me about this? 


I was doing some looking on the internet about my husband losing so much weight with this cancer and I came across this....


I am so confused and scared.  My husband just won't eat.  he is continuing to lose weight and has just lost interest in everything.  All he does is sleep.




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tcell's picture
Replies 7
Last reply 5/28/2014 - 3:28am
Replies by: tcell, Anonymous, Mat, BrianP, cpeters2498, hbecker


I couldn't post this earlier as I had to celebrate with friends and family but wanted to give all of you some good news and hope!

For those of you who don't know me (I have not published my story in my profile) I am a stage IV newcomer, dx in early Feb of this year, amost died in hospital as my mel was dicovered pretty late but with god's help and some luck survived and was put on the GSK combo right away as I am BRAF+. Tumor burden would not allow waiting for Ipi to kick in. I am 35 years old and father of a 2 year old daughter.

I am being treated at Vienna university hosptial (Austria) by a group of people specialized in mel.

Had 2 large mets on liver, one on left adrenal gland,, lots of small mets on pleura and and peritoneal, one on the left lung, 2 bone mets (TH-10, hip bone).

After 3 months of combo with full dosage, no side effects I got the results of the first CT scans last Friday:

- peritoneal and lungs are clear
- all other mets on vital organs show considerable shrinkage (no idea why there is no percentage in the report)
- bone mets are stable

Going ahead with BRAF / MEK. hoping and praying that they will keep doing such a great job for a while. Anti-PD1 might become available in Europe outside of trials in fall of this year but I hope to be able to stay on BRAF / MEk for longer!

Aside from the meds I have changed my diet completely to mainly vegetables and fish, meat only exceptionally. I am taking vitamin d and k as supplements.

I often read in posts in this forum "My husband is on BRAF / MEK now which should keep him going for 10 months"!"
I cannot say how long it is going to be fine for me but I am really actively trying to avoid to let the statistic median value enter my mind that strongly! My oncologist told me of people who have been on Dab only for more than 2 years and still going! I am aiming for the best not for the average!

I know that immunotherapy can be much more long-lived than the inhibitors but do not underestimate what they can do for you. For me they have saved my life!

All the best,

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Just wondering....

I've now gone through two winters in Boston while on the anti-pd1 MK-3475 treatment for my stage 4 melanoma.  I have noticed that in the winter my side effects seem to be worse than in the warmer summer months.  I feel so much better in the warm months and experience almost no side effects.  Where in the winter, there seems to be a pressure or squeezing on my organs.  Has anyone else noticed that in the dry, freezing weather that their side effects from the treatments seem to be worse?


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Anonymous's picture
Replies 1
Last reply 5/28/2014 - 3:03pm
Replies by: Ashley

So, have ipi-related colitis after 3rd infusion.  Within 36 hours of the start of a period of diarrhea not helped by Immodium, I start on Prednisone (now at 100 mg/day) and Endocort, i.e., got on it quickly.  Diarrhea stopped within a day.  However, still having bloody stools (more bright red than dark, but some dark) at each movement.  No abdominal pain other than minor cramping around movements.  Have been on steroids for about 2.5 days.  Should the bleeding have stopped by now?  Of course, I'm in touch with my melanoma specialist and scheduled for a CT scan and colonoscopy in the coming days.  Just curious if anyone has useful experience to share.  Thanks.

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Eva's picture
Replies 2
Last reply 5/28/2014 - 5:17pm
Replies by: Eva, Janner

Hi there, 

Fistly, I do not have melanoma. Several years ago, I did have a large BCC in a birthmark on my lower back, with very little sun exposure to that area.  Lots of AK's frozen in my face surely due to sun damage (farmer tan).  I spent a major part of my 61 years outdoors, some in the tropics and also at high altitude.  Mostly, but not completely covered skin...  

Sometime between my 6 months skin checkups this "keep an eye on this one" old atypical mole on my middle back changed color to black and was biopsied.  The nurse called me and said it was a mildly dysplastic nevus with clear margins.  So no further surgery was needed and I received a 3 months appt for next skin check.  When I left the derm's office it was more like - pending biopsy report, we'll see you in a year and I was proud of the upgrade! I could even cheat this summer and go out between 10 and 4.  After all next checkup was a year away...

So, are sites of already removed dysplastic nevi still a concern?  Pretty sure this was the only one I had.  Could be the derm being very causious since I did not notice the color change.  

Still got to find a perfect mirror combination to make inspection possible without contorting myself...

Trying to take a picture of my back with my phone for this dyslexic person may prove futile for a while longer. At least it's comical!





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Anonymous's picture
Replies 4
Last reply 5/28/2014 - 5:34pm

Is there anyboy who's been down this trail  thats's around to talk about it ?

Sometimes no news is the best news!

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Aussielyn's picture
Replies 2
Last reply 5/28/2014 - 5:48pm
Replies by: Aussielyn, tcell

Just wondering if anyone knows definitely whether or not turmeric is contraindicated when on GSK's dabrafenib & trametenib . I have been putting some in my juices (fresh) & having powder in water as well. My chemist & Dr think it's ok but are not 100% sure. Thinking now it's best to stop till I find out for sure. 

Would appreciate a response if anyone knows. Thanks,Lyn 

Heal with every inhalation and let go of cancer with every exhalation.

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SamC 23's picture
Replies 0

Yesterday I had an EBUS performed to check my lymph nodes. A biopsy was done and showed no signs of MET!!! A wedge resection was completed to remove the node from my left lung. It's still unclear what may have caused the growth and enlarged lymph nodes. Possibly something I inhaled that could have caused this infection.

Kudos to St Lukes Hospital Bethlehem, PA and my Thoracic surgeon Dr. Burfeind. I can not say enough about these people. Now time to recover and be thankful for everything in life! 

Keep a positive attitude towards life, don't let yourself get down in those moments. Remember the people that love, care, and that are praying for you. In the end you will be the on succeeding!

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