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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JoshF's picture
Replies 11
Last reply 5/13/2016 - 11:05am

So blood test came back positive for HLA-A2 which got me an appt at Loyola to discuss the Adoptive Immunotheraphy Trial. I was under impression that it was TIL but apparently it's different. Anyone really know key differences? The trial investigator explained that T Cells come out of blood vs. tumor. I have some other questions I'm waiting for a response for but please chime in. My current oncologist thinks this is great option and can show promising results. I'd just like to know that since it's not TIL, do they remove tumor? Is there chemo involved? All questions I guess that will be answered next Thursday.

In the meantime, I've been considering looking at some of the things that Celeste, Ed and Gary have thrown out there. Trying to sort everything out in my head, get through each day while holding onto hope. I know there's many out there who have been in a bad place and are still here doing well. I just want to be there with's what I want for all of us. Blessings to you all!!!




Let's work for better treatments....for a cure!!!!

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Nell's picture
Replies 5
Last reply 5/12/2016 - 6:55pm

Had my 3rd infusion of Keytruda today.  Blood tests show my thyroid is beginning to act adversely to the treatment. Both tests show it is overactive which has never been a problem before. . Dr. said this will be watched carefully. Can this result in permanent problems? Dr. said I may need thyroid meds.....Do you sometimes have to stop Keytruda because of this?If someone can enlighten me about keytruda and the thyroid I would really appreciate it. Today has been a bit unsettling as I was hopeful I could avoid side effects since I have had to stop both Yervoy and Tafinlar/mek before.........Plus! My melanoma specialist is leaving and accepting a new position elsewhere.....I have been feeling really positive for awhile but tonight I am kind of bummed.......Thanks for the help!

One voice can make a song; one life can change the world.

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Has anyone developed lymphedema NOT caused as a result of surgery and/or chem/radiation?


Is Lymphedema an indicator of cancer in the absence of surgery and/or chemo/radiation?


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DZnDef's picture
Replies 6
Last reply 5/18/2016 - 5:53pm

I just found this site today as my sister invited me to participate in a "fun run" they are sponsoring.  I know most of you have probably already noticed it.  I am posting it here because it is the easiest site to navigate about melanoma that I have yet seen.  It looks like the survival data is out of date (2009 - pre Yervoy, Keytruda, Opdivo), but it still told me worthwhile information about my own Stage IV disease.  Please let me know if this site has been discredited somehow.  It looks pretty legit to me (but what do I know).

I am linking directly to the Stage IV page (because that's where I'm at) but the previous page lists all the stages.  Also looks like a pretty up-to-date list of melanoma specialists (I say that because my own specialist is listed at his new location).

Maggie - Stage IV (lung mets unknown primary) since July 2012

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karinaaa's picture
Replies 5
Last reply 5/13/2016 - 10:35pm

Diagnosed with melanoma in 2015, interferon knocked out my liver (enzymes up past 1200 after a week on high dose, should be 300 max) and I received no further treatment. An ultrasound for an unrelated issue revealed that one of my ovaries is looking worn out and my reproductive system looks "normal for a premenopausal woman". Thing is, I'm 21. I'm pretty sure interferon had something to do with this since I've been having some subtle-but-new signs of something hormonal going on post-chemo, and I can't think of anything else to explain this. High doses can induce menopause after all, and after everything my liver went through, it's conceivable that its ability to break down and remove excess estrogen was impaired, which led to estrogen buildup and ovarian damage (among other symptoms I actually noticed before the ultrasound, that could be attributed to high estrogen levels). So... am I completely off track here? Think it's possible?

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maryb-z's picture
Replies 4
Last reply 5/10/2016 - 9:11pm
Replies by: maryb-z, jamieth29, jenny22

I connectected with Jamie here, through email amd texting. I haven't received any resposne from him lately and haven't seen any posts from him. Has anyone heard? I know he consulted with Bubbles (Celeste) a lot. Thanks. Just concerned.

No One Fights Alone

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knittingirl's picture
Replies 1
Last reply 5/10/2016 - 9:42am
Replies by: Anonymous

I was diagnosed stage 3b in September 2015 ( lymph node in my left groin). I have been treated then at UCSF. First I had a  ipi/nivo combo but had to stop after the 3rd infusion due to severe colitis that lasted 1 month and a half. I had a scan beginning of February and was declared NED. I went through surgery in March for a CLND of left groin and the pathology confirmed the scan: no cancerous cell. I was so happy !

I had an other scan last week and my manubrium and pubis bone show a SUV of 9.5 and 8 . Oncologist wants me to get an MRI this Friday.  Is there any other explanation ( except cancer) that could explain this high level of SUV ? I am confused as I thought that my immune system would still be active 5 months after the last infusion of ipi/nivo.

Is there anyone who went through ipi/nivo and see his tumor disapeared and few months later got a recurrence ?

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sister of patient's picture
Replies 14
Last reply 5/15/2016 - 12:49am

Hi all - Just reporting in case it's of any benefit to anyone else.

My sister just had a 2nd infusion last Thursday. Woke up Friday with tinnitus and it's progressed today to where she couldn't even stand to listen to one of her favourite CDs (Adele - the undulations really made it go wacky!!) - said it was like her whole ear was starting to vibrate.

Read all I could find on here this aft about tinnitus and she is calling her onc. But of course it's all scary - maybe just really bad congestion in her sinuses, maybe pituitary gland affected and cortisol levels falling, maybe brain mets (she was clear before but that brain scan was 4 mos. ago).

Otherwise, tolerating 2nd infusion really well and starting to feel way better. After first infusion, she was ill for two weeks and then felt better but visit with onc prior to 2nd found she should've been on a drug that they took her off several months ago when she went on Taf/Mek (something for stomach acid - a common drug that ulcer patients take). As it's way better, we're hoping the stomach med was the "missing piece" of the puzzle.

Update, she called onc - nurse isn't concerned about the tinnitus at all BUT they are concerned because her vision has been steadily deteriorating for weeks. They knew that last week and now, all of a sudden, they seemed to be concerned??? Geez!!

I am making inquiries about how to get a 2nd opinion - we're here in ON, Canada though - not easy!!!

Best thoughts, always, for all on here!!!! 



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The WOW first! Because we all need to know that even when it looks like there is a set back things can still work out.

In January of this year my Mom's MRI was still showing all 28 brain tumors that were treated by gamma knife.  This last week she had her 3 month follow up MRI.  Her radiologist only saw the area of her brain where the craniotomy ocurred and one tumor that was treated in August of 2015.

Nothing else was visible! Nothing!

So, either the remaining evidence of the 27 treated tumors is completely gone OR they are now so small that the MRI can't "see" them.


My Mom, 78 year old, was diagnosed with Stage IV in November of 2013. We didn't know it at the time, but she also had 3 brain mets that the radiologist missed!  Lucky for us we saw a second and then a third opinion. The third doctor had his radiologist look at her MRI and they found 3 brain tumors. (Even I knew there was a problem when I saw the screen...) 

My Mom ended up having not 3 on the MRI.  8 of 9 brain mets were gamma knifed in early December of 2013. The radioncologist missed 1 of the 9, but we would not know that until April of 2014. 

She started Yervoy 4 days after the first gamma knife treatment and did really really well. She only did 3 of the 4 infusions and got colitis, but even with that we saw a huge decrease in the subcutaneous tumors.

Unfortunately, we found in accidently (another misdiagnosis!) that my Mom had 17 more brain tumors on top of the ones treated in late 2013. Needless to say it was a bit scary, but we didn't know there were that many. - We had switched all of her care to USC in Los Angles when we were told by a neuroncologist that we need to wait and see how the new tumors progressed before we talked about gamma knife. (Idiot!) - Within 24 hours we saw her new radiologist and we have been thrilled with her care and the results.

A year or so went by and my Mom had great results between the Yervoy and the gamma knife, but did had a reoccurrence that needed to be treated with a craniotomy in June of 2015. We then found out that she had another brain tumor in August of 2015, which was treated with gamma knife. She started Keytruda in September of 2015. - My Mom had few side effects from all the treatment, with the exception of colitis and thrush. She went back to the DMV and retook all of her tests after the gamma knife treatment and has been driving since early 2015... No cognitive issues to report. Thank Goodness!

Can't recommend her doctors or USC in Los Angeles enough. I can't imagine that she would still be alive or have all of her faculties without them.

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Rita and Charles's picture
Replies 9
Last reply 5/10/2016 - 11:28pm

So new scan results, the BRAF/MEK combo is stil working - right tumor shrunk, no new organs affected, left lung mass showing in last PET scan not showing as significant on latest CT, lymph nodes affected still show uptake but no new change......So stable, stay the course.  BUT, the last months in particular the Tafinlar/MEK has affected Charles even more - more nausea, more tatique, a terrible quality of life - always in pain.  But stabel right?

I am going to take a leave from work, Charles is at home and sick each day, sick for the last 9 months....we need a break, a chance to grab a few happy months. So we spoke with oncologist, of course not happy at the thought of stopping treatment.....we tried to lower dose, but still Charles is sick from it...lost 11 more pounds from the end of March to our May appointment.  We went to the islands in April, Charles so sick - he stopped meds after 3 days then spent 6 days enjoying family more.

So we return home, timing is weird as we have to dream of running away to the islands for 6 months....go off meds, do bucket list.  But of course, no decison is easy.......without meds, will the melanoma monster explode, we come back and then go back to Braf/mek to shrink and then onto immunotherapy?  Is 6 months of happiness worth the risk? We make a decision and then frighten ourselves it's the wrong one.

If we stay here, go right to guarantee that will work, side effects, etc.....they grow and then we hope it kicks in.

I hate to bring this topic up as i see so many warriors, go from one thing to the next then the next....and we have only been at this a year.  But we are a few bucket lists knowing the costs may be great? or stay the course, just switch up the therapy......

Where we are going, treatment would not be available.........we are sure, we are not sure.......are we insane?  Will we look back 3 years from now and ask how could we have done this? or in 3 years, could he be worse, and we ask ourselves why in God's name didn't we grab a small window of time to just escape and be happy - then get back on the merry go round.

I don't expect any magic answer...........has anyone out there stopped, gotten off the merry go round, then jumped back on...

Confused, do you ever know what the right choice is in this shell game of tumors and lymph nodes, just waiting to kill you.



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Anonymous's picture
Replies 0

I was diagnosed in 2001 with a medium size ocular melanoma and had plaque radiation in early 2001.  All my check ups had been great since then, with the tumor shrinking slowly (which my doctor told me was good, much better than quickly which he said could mean it was an aggressive tumor).  He was one of the doctors in the COMS study. I went every 6 months every year.  This year, after 14+ years, the doctor was surprised when the ultrasound showed the tumorr looked a little elevated.  I told him that I had been hit in the eye in the fall while playing with our son's 48 pound dog and got a black eye.  He sent my ultrsounds/scans of the eye out to other eye cancer specialists in the US and asked what they thought.  Hey felt it was possible I had dried pooled blood in the back of the eye from the hit.I have a cataract on that eye, so they always used ultrsound to measure.  He fletthey sould take the cataract off and have a betterlookat the back of the eye.  In the meantime,my chest x-ray and liver function tests were all normal.  I also had an ultrssound of the liver.It showed  some vague, ill-defined lesion on my left lobe of my liver.  Then, I had an MRI.  they used two different contrasts on two different days as the first contrast was blurry.  It showed a few very small spots. In  follow up with my doctor, she said she had spoken directly with the radiologist, and he said he was unable to determine what the small spots are.  Now,she has suggested doing a pet scan to see if it shows anything.  I am scared and anxious, which has always produced more acid in my stomach.  The past couple of weeks have been the pits.  Any thoughts?  HELP!

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DZnDef's picture
Replies 1
Last reply 5/8/2016 - 8:41pm
Replies by: landlover

To all you Mom's out there raising kids and battling this disease at the same time, I salute you!  I hope your kids spoil you rotten today as you deserve!

To all of you that sill have your Moms around, I hope you give them loads of kisses and squeezes.  As hard as it is for us to deal with this disease, imagine what it's like for them.  They gave us life and now they watch helplessly while we do battle to keep it.  Rough stuff.  My own Mom has two of her kids fighting this beast right now.  But we're both still here!  So for today, it's all good!

To your health, everyone!


Maggie - Stage IV (lung mets unknown primary) since July 2012

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JoshF's picture
Replies 19
Last reply 5/17/2016 - 11:18pm

Hello again everyone. I saw onc yesterday after CT Scan. She said that mass on left side near intestines is not invading intestines but in tissue surrounding...which apparently is a good thing. The reading of the PET scan by radiologist said there was no concern with the high SUV uptake...appared muscular in nature which after the CT Scan Friday was confirmed. Though there appears to be two small spots in lower back. So we moved to is a certain in both scenarios.

1. Transfer of Genetically Enginereed Lymphocytes. #01586403 So I guess you have to be positive for HLA-A2 antigen in your blood. They drew blood and I should know by Tuesday or Wednesday. They said it's 50/50 chance I'm positive. I have no idea what it is or means. Anyone have any insight into this trial? At first I thought it was a TIL trial. So blood results hinge on this...

2. Intratumoral Cavatak combo with Ipi. So I guess this is just ipi paired with injectable virus.

My onc likes both options at this point but wants that HLA-A2 test first because that could determine where suregery is done as Loyola University Medical Center has first trial. I have tons of questions that I posed to her that I'd like to pose here and ask anyone that can address please do.

1. Would TIL be a better option? I'm not sure I can get into that but shoud it be explored. Though she likes the promise of it, I'm not in a place where this treatment is needed.

2. I responded to ipi in past but apparently Nivo had no impact on me. Can the Nivo/ipi combo possibly provide a response...or keytruda? Some other type of combo. And can you respond a 2nd time to ipi. Her response was yes, people have responded 2nd time go around with ipi and have had durable responses. Clearly she feels ipi combo with virus is best path for me. I haven't see results but honestly I've been so beat down that I haven't looked.

3. What else is in pipeline that can provide benefit for me...a durable response. Apparently there is quite a bit but she never wants to put cart before horse. She feels these can be 2 good options that put me on the right path...I just can't help but wonder if there is something more.

Anyway, I'd like surgery ASAP. This seemed to come on quickly and like many of you I'm just plain tired of this shitty disease. I pray daily for all of us and give thanks for this forum. I try to peek in every now and then because I like to check in on people but really just stick to Celeste's blog. I saw that Charlie is back and it just pisses me off and make me even more upset. I hate to see the struggles but appreciate all the support...


Let's work for better treatments....for a cure!!!!

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Replies by: EkinIstanbul, WithinMySkin, Anonymous

Hello friends, 

My 1 year interferon treatment will be completed in 6 weeks. (stage3 melanoma) We have given breaks  in between every 2-3 weeks because of the low blood levels- side effects of interferon. Has anyone experienced this, do your doctors add the missing doses after 1 yr treatment and advise to continue a couple of more months to complete the full 1 yr? Many thanks and take care.. 

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btcedarr's picture
Replies 2
Last reply 5/7/2016 - 9:16am

I have asked my dermatologist and onc surgeon and have never received a straight answer. I was diagnosed 1b with clear margins after a WLE and a negative SLN. I keep reading about people in similiar circumstances that evolve into other stages without another primary. How does this spread???

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