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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So the T-Vec injections I have been getting don't seem to be working on their own and my oncologist has decided to start me on Opdivo. I have read all of the side effects from their website, but I would really like to know what other patients have encountered being on this drug. 

Got PET scan results back and a spot was found on my left breast that now I am having to get biopsied to see if it's breast cancer or my melanoma spreading, so I'm not sure if the above treatments will continue, but I already have one scheduled for the 26th, so any help wouldl be greatly appreciated. Thanks in advance. 

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landonm's picture
Replies 3
Last reply 4/8/2016 - 9:26pm
Replies by: Janner, landonm

Hi.  I am a 57 year old active healthy (was!)  individual.  I had a very thin (.35mm) melanoma removed from my neck by wide excision in Nov. 2015.  Because of the thinness no further treatment except skin checks were recommended.  Fast forward to March of this year: I noticed an enlarged lymph node near the excision site and watched it for about a month before calling my dermtologist.  She was concerned enough to refer me to a sugeon but said it was most likely not melanoma.  Unfortunately, it was.  I am now awaiting scans and have been referred to the Melanoma Clinic at the University of Michigan but won't see them for 3 weeks. 

Naturally, I am pretty concerned.  Does anyone else have a history of this kind of quick progression from a small lesion?  I have been reassured by the melanoma clinic nurse that 3 weeks wait will not change anything, but it seems like a long time! 

I've been reading other's stories- an am glad there is a place for us to meet and talk.

Thank you!

Peggy Landon

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Anonymous's picture
Replies 3
Last reply 4/9/2016 - 7:50am
Replies by: MoiraM, Anonymous, casagrayson

so I never told my mother I have stage 3 melanoma. The lymph node biopsy was such that they could not rule out stage 3 so I am only going for cat scans and sonongrams. No chemo. I'm 52. its been 6 months. How do I share this with my mother?

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Anonymous's picture
Anonymous
Replies 6
Last reply 4/8/2016 - 5:33pm

I'm a member of a Facebook support group for melanoma patients in the UK. Some fellow members have failed to respond to ipilimumab / yervoy or pembrolizumab / keytruda. They have also tried dabrafenib but the disease has become resistant. TILs is available but not on the NHS and is expensive if you are self funding. T-vec is not available for patients who have bone or lung mets. What treatments or trials can I suggest to them ? Mel J

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Anonymous's picture
Anonymous
Replies 28
Last reply 4/21/2016 - 6:27am
Replies by: UriahPH, jennunicorn, MoiraM, casagrayson, AllysonRuth, Anonymous

I looks terrible I'm so scared I literally can't breathe! 

 

Its irregular, has dark pigment. I've just seen a doctor who referred me to a Derm. She said she's not too worried about it but how can she not be with its characteristics?

 

Here are some images.

http://imageshack.com/a/img922/3856/4yfOm7.png

http://imageshack.com/a/img921/3748/GHz1SA.png

 

by looking at it, what are the chances of this not being Melanoma?

 

 

 

 

 

 

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keepthefaith11's picture
Replies 5
Last reply 4/9/2016 - 10:38am

My dad had his first scan yesterday since initial diagnosis back in December. Everything looks good with the exception of the lymph node area where he had the surgery back in January. I am not sure what they saw but they want to follow up with an ultrasound. Wondering if it could be scar tissue from previous surgeries? Anybody know what could show up on a CT scan as far as the lymph nodes? I guess they saw something with one of the nodes but cannot feel any enlargement when examining him.

He finished his second infusion of Yervoy about a month ago. Had to discontinue treatment due to liver side effects. Also had a full round of radiation to the lymph node area in the armpit.

Thanks!

Annie

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khubes's picture
Replies 2
Last reply 4/9/2016 - 3:16pm
Replies by: Mat, Maria C

Hey all, I came across this article and thought I would share. http://www.onclive.com/web-exclusives/expert-always-use-frontline-immuno...

 I know Mat mentioned looking for response rates for people on the combo after failing pembro - it looks like Dr. Luke is going to be running a trial looking into this, as he is quoted saying, "I am going to launch a clinical trial in which we are going to treat patients who received PD-1 as a single agent who progress with the combination of pembrolizumab plus ipilimumab at a low dose. We want to determine if the combination is just as good in second-line as first-line, because then we can avoid exposing the patients to the side effects until we know that they need them." 

We may have to wait a bit longer to get this data but at least it's on their radar!  

Best,

Katie 

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Sgarceneaux's picture
Replies 3
Last reply 4/8/2016 - 11:54am
Replies by: Becky, Anonymous, Janner

My 11 year old daughter was just diagnosed with an atypical Spitz tumor that started in the scalp and now has moved to the lymph nodes in the neck. The initial pathology was done at UCSF and further test are being done at Sloan Kettering. We are currently seeing our local Pediatric Oncologist/Hematologist who has advised us to hold tight  for the test results to come back and do a PET scan in 2 weeks. I am looking to get a second opinion as not to waste time and he said he would facilitate this for us but I want to make sure I go to the best place for this second opinion and don't waste anymore time. Does anyone have any experience with this type of tumor and where the best place would be to go? Any info would be greatly appreciated. 

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Tamlin's picture
Replies 2
Last reply 4/7/2016 - 12:03pm
Replies by: jennunicorn, Anonymous

Hi

I had a fine needle aspiration biopsy on enlarged lymph node and haven't been feeling great since. I have mild flu like symptoms and sometimes a dull ache in the back of my leg and constantly tired.  Can this be related? 

Thanks 

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Anonymous's picture
Anonymous
Replies 10
Last reply 4/8/2016 - 10:39am
Replies by: Nanners10, jade1111, jennunicorn, fortiz, Anonymous, Janner

I have recently been diagnosed (yesterday) with melanoma present in a lymph node in my groin.  I previously had a thin melanoma diagnosed 9 years ago 0.65mm treated with WLE.  No other treatment was warranted and based on the pathology, treatment would not be different today.  I live in Northern California and pursued being seen at Stanford and UCSF clinics just to ease my anxiety after my original diagnosis.  Had tried to really move on from the terrifying experience and took the advice of someone on this board to stay off of it unless I needed to be here.  Well, 9 years later here I am.  Recently I felt a lump in my groin and found out yesterday that it does contain melanoma cells.  Met with a oncological surgeon today.  I am waiting for insurance approval to move ahead with MRI of brain and PET scan.  Hoping that these come back clear.  At this point I am hoping someone can point me in the right direction.   Should I return to UCSF for consultation there as well?  Elsewhere?  Suggestions for providers in Northern California?  Meeting with surgeon today was in my local area.  After clear scans he can do groin dissection in about two weeks. That seems like a long time to wait with cancer in my groin?    I want to be sure to receive the very best in treatment and am overwhelmed with trying to care for myself, body and mind, my small children and at the same time making sure that I receive the best medical care available.  I have not had the best experience up to this point.  Any tips?  Ever so grateful and encouraged with success stories on this board.

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Marie with 4 boys's picture
Replies 2
Last reply 4/12/2016 - 4:50pm
Replies by: ashley_k, jennunicorn

I had my WLE a week and a half ago (biopsy said in situ), and had my return with the surgeon today. We discussed pathology report. Good news - it was all in situ (biopsy said extended to the margins). Bad news, the in situ extends microfocally to the tips and lateral margins. This is in a giant congenital nevus that is fragmented like a large freckle/mole area on my arm. So, I'm now to see a mohs surgeon and a plastic surgeon to discuss my options. My surgical oncologist (who only deals with melanoma), thought the entire nevus will most likely need to be removed, and skin grafts done. The nevus is huge - covers from elbow to shoulder and half way around my arm (appx 11 in x 5 in). Anyone here had large areas removed and skin grafts? Or any other thoughts for me? Thanks so much.

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Sfern5's picture
Replies 9
Last reply 4/13/2016 - 4:12pm
Replies by: cheris, Sfern5, pookerpb, Bubbles, Anonymous

 Does anybody have any information about difficulty with a cough/coughing up blood And  endless " bronchitis" while on Keytruda?

 They postponed a couple of my treatments to put me through pulmonary exams and cardio exams and came to the conclusion I have bronchitis not pneumonitis which would be a side effect of the immunotherapy.    But it won't go away. It's been about 2 1/2 months of and was coughing and pain in my lungs. My tumors are gone but I'm exhausted. We've tried all kinds of  decongestants, steroids and whatnot. Nothing's working. Any insight would be appreciated. Thanks.

Cancer, Schmancer.

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Anonymous's picture
Replies 3
Last reply 4/7/2016 - 6:47pm
Replies by: DZnDef, Anonymous

Two years ago a derm said a spot on my back had to be removed.  Like a fool I did not get a second opinion and did it.  Turned out to be a very slow growing type and probably unnecessary given my age and other other chronic health issues.

Now a dark spot appeared suddenly on my wrist, purple to start with, then browner, not a mole. About the size of a pencil eraser.  Seemed to fit the bill better for melanoma than the early one.  But it is fading fast a week after I noticed it.  What does this mean?  

There are only two derms in my town and I don't want to go to either one of them.  Big city a distance away also had two derms that I consulted after first surgery.  Not impressed with them either.  Why is it so hard to get a competent derm who doesn't rush into surgery, doesn't get annoyed with being asked for a second opinion.  I went to 4 in all and wasn't unreasonable, kept going because I knew I needed to find a good one for future reference.

If this is melanoma regressing, does it need treatment?  Keep watching it?  Do what about this?  If I go to another knife happy derm and he/she carves out a ditch like the one in my back, I may lose function in my hand because there isn't much between skin on wrist and the tendons, muscles, bone that operate my hand.

Any opinions?

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Mat's picture
Replies 11
Last reply 4/12/2016 - 10:47am

So I had my first scans since I started on the ipi-nivo combo in January.  I received the first 3 combined infusions, but then had diarrhea that required the use of prednisone to get it under control.  Out of an abundance of caution, we paused the fourth combined infusion and I moved into the nivo-only portion of the treatment (had my first nivo-only infusion the same day as my scans).  I'm now 11 weeks into the treatment.  My scans were stable--nothing new and no change in my existing tumor burden (which is considered relatively low--but could always be lower!).  I was hoping for better (and continue to hope for better), but I'll certainly take it.  I feel very fortunate to have the opportunity to even try this treatment (which was only FDA approved shortly before I started).  In the meantime, my kids--who were 4 and 2 months at the time of my Stage IV diagnosis in 2013--will be 7 and 3 in a few weeks.  While I would love to get this melanoma monkey off of my back, I'm grateful for each day.

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