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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Wife_WilliamR's picture
Replies 7
Last reply 3/8/2017 - 1:34pm

I have been a "creeper" on this page since 2010, but never posted.  Sorry we are all on here and have to meet like this!

In 2000 my husband William had a Stage I melanoma removed from the back of his hand.  In 2010 it returned to his elbow (stage IIIc), he had surgery to remove, 5 radiation treatments and tolerated 5 months of Interferon.  It returned to the elbow and small lung nodules in August 2014.  He had multiple surgeries on his arm.  He started Ipi/Opdivo combo trial at Johns Hopkins from December 2014 - October 2015 and although that seemed to keep his slow growing melanoma at bay it was not eradicating it.  Dr. Sharfman recommended we go to NIH for TIL therapy.  He received TIL during the month of February 2016 along with 4 doses of Keytruda.  Until November 2016 the small lung nodules remained stable, but started showing signs of progression.  Docs at NIH recommended the Urelumab/Nivolumab trial which would be back at Johns Hopkins for us.  We also went to Memorial Sloan for a second opinion with Dr. Postow who thought the trial was a reasonable next step for us.  William started the trial 1/6/17 and after 4 treatments the scans show minimal growth.  He is to stay on the trial and get rescanned 4/21/17.  If in April there is growth then they would remove him from the trial.  I am looking for thoughts on what would be next to try - he is BRAF negative but does have the NRAS mutation.  We have "heard" things like TVEC and chemo could be the next step.  I am the one who does all the "research" for William and am terrifed I am missing the best opportunities for him.  (We live on the East coast, but can travel for treatment.)  Thank you in advance for anything you have to offer!!

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Mikalias's picture
Replies 4
Last reply 3/7/2017 - 12:21am
Replies by: Mikalias, Anonymous

I was diagnosed with a rar form of melanoma on my right ear lobe stage 2.  It was biopsed and removed and just below it they took out 3 centenal lympth nodes but 6 months later a stage 4 tumor apeared right below where my ear lobe used to be that ws atatched to my parotid gland.  The Oncologist told me I had 5 months to live with chemo but I told him I was having extreme pain becuase the tumor was pushing against my arotid gland so he sent me to have radiation treatment and that solved the pain problem but it did not get rid of the tumor.  When I came back after the radiation treatment (month later) the oncologist told me that Kiaser had approved of a new treatment called immunothearapy and promptly put me on Yervoy and after 4 treatment all the tumors (11 in my liver, 7 in my lungs, and one inside my bone on my right shoulder) were reduced to inactive lesions or what he called photopenic which I think means totally gone. My primary was still there and the question I have is, does radionion treatment on the primary caused it to be immune to the Yervoy treatment?  After two years i'm now back on immunotherapy becuase there is 3 leasion on the liver that are starting to light up on the combined pet/ct scan and he is now giving me Keytrudia.  after 3 treatment the 3 tumors are getting smaller but the primary on my neck is still the same size and I have a possible new tumor under my right jaw on the neck so it looks like the Keytrudia wont work on tumors that are received radiation treatment and the mets from that tumor are possibly immune also.

 

Any comments? 

 

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Replies by: cancersnewnormal

Interesting article ofrom the New York Times today on health and who to tell if something is up...

This part reminded me of how much we teach and help each other:

When patients seek out others with similar illnesses, their knowledge grows exponentially. “It’s more scalable, less serendipitous,” he said.

Even my mother, when she broke down and divulged her operation to a friend, who happened to have the same condition, radically changed her course of treatment.

Dr. Wicks’s research shows that patients who participate in peer groups have learned tips about drug sequencing or little-known specialists that proved critical to their care.

“The value of a tweet-length piece of information can be the difference between life and death,” he said.

Keep Calm and Lurk. - What a great heading!

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Anonymous's picture
Anonymous
Replies 2
Last reply 3/5/2017 - 3:40pm
Replies by: messedmelanocytes, Anonymous

Hi Everyone,

Firstly thanks to all of you for being here, you have anchored my sanity for the psat few weeks since hearing the words MM from my doctors office. I have been roaming around the internert but mostly on this site to reeducate myelf about MM.

My first education on this subject was back in 1995 when my Father died of this illness. I was in my 30s then, I was told I have his skin so this disease will come one day for me too. So, I started visiting dermatologists annually and had many biopsies of moles, all of which were negative. After ten years of annual visits and negative biopsies I dropped off in both my visits to dermatologists and my attempts to understand MM. I had always been sun smart, wore sunsreen, knew the right ones to use, never had a sunburn, never visted a tanning bed, avoided mid day sun or prolonged exsposure. So, I fugured I had out smarted the threat.

Fast forward to Jan 2017 at my annual physical my GP recommended i see a dermatoogsit for two moles she didnt like the look of. One biopsy came back as MM in situ and the other as dysplatic nevi. Wide excision was recommended for both. Last month, the wide excision showed them both to be MM in situ. I dont fully understand the pathology report which says:

Microscopic:

1) An increased number of abnormal melanocytes disposed as solitary units and in nests are present at the dermo-epidermal junction and above it.

Diagnosis:

1) Melanoma in Situ, residual, completely excised

2) Scar tissue , Negative for Malignancy  

Note: 1) This neoplasm is located 3.8 mm from the closest lateral margin 

The plastic surgeon said I must go back to have more removed from #1 because the margin in not wide enough.

My questions on the pathology report, if anyone knows are, 

1)what does the residual term mean for #1 site?

2) what is the refernce to scar tissue for #2 site? Why is it negative for malignancy? Does that mean the biopsy saying MM was wrong? Or is it possible that the biopsy reomved all of the malignant melanocytes? Why does it not say how wide the margins are and no mention of a neoplasm?

3) why is there a microspcoic description for site #1 but not for site #2?

4) does the reference to the dermo-epidermal junction mean that this was almost a stage 1 rather than an in situ?

Outside of the pathology reports, I also have some in general sort of questions.

1) Should I consider genetic testing, would that be of any benefit to me? My Father's father died of prostrate cancer and  he also had a brother die of pancreatic cancer. If I understand the genetic information on MM, these are all involving similar gene mutations.

2) How can there be a link between MM and the immune system not recognizing the cancerous cells if the circulatory system does not meet the epidermis where the Melanoma in situ resides ?     

3) Can the process of biopsy and excision introduce the malignant melanocytes to the circulatory system increasing the risk of them travelling to other organs?  

4)  Going foreward what lifestyle changes do most patients make? Do you avoid all sun, pretty much avoiding going outside at all when it is sunny? Is it too late now to benefit from a change of habits for me?

I am going back to the dermatologist this week to have more moles looked at and to take mole mapping pictures i have that were done 20 yrs ago. I will feel muich beter if she says she sees no additional sites of concern, somehow though, I think this is unlikely. So, then I will wait and hope that if they are biopsied there are no more mm in situ or worse found.  

I know I am lucky because what has been found was caught early, I am worried though about a few other moles now, which I read is a common reaction at my stage in this situation. It is taking a really big toll on me mentally. If I didn't have the family history I would feel like I will be one of those people who deal with this and then never hear from MM again. But because of my genetics it is so hard to be optimistic, I feel like I'm stanidng in front of a firing squad just waiting to hear the guns fire.

I want to exploit my good fortune in find this early, but im not sure how to best do that.

Thank you all for being here, your electronic hand holding is increadibly valuable.   

  

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UBContributor's picture
Replies 5
Last reply 3/5/2017 - 3:40pm
Replies by: J.bun, UBContributor, jennunicorn, Anonymous

Forum folks, what is the regular follow up should be in my case? I keep hitting odd drs who recommend me nothing, but I can see you all being followed up, well and regularly.

Mid Nov 2016: dx-ed by dermatologist Dr Porres of MD, he gave me a very basic report "MM, margins are clear", no stage, depth or mitotic rate. A week later he made 5 mm cutting of the skin around the initial spot and sent me home saying nothing else is needed ever, no follow up.

Early Jan 2017:  After reading Internet and consulting here with you, guys, I found a different hospital, got pet scan, more skin cut and 2 lympnodes removed in groin, all is clear. Here the drs suggested to get MRI annually if i wish, nothing else.

Don't I need at least a dr's check 3- or 6 monthly? The mole was an inch above ankle bone, pencil eraser size, nasty looking, colorations, thicker, I would say, most probably stage 1b. 26 y.o, male, otherwise totally healthy.

Thank you for support. 

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Anonymous's picture
Anonymous
Replies 14
Last reply 3/12/2017 - 1:33pm
Replies by: Anonymous, jennunicorn, JustJaren, Bubbles, Ed Williams

First of all, sorry for my bad English.
I'm 21 years old middle eastern female and a mother for a new baby for the first time.
Two suspicious lesions was removed today. One of them resembles SSM and the other one looks like nodular melanoma, both lesions are dark black and nasty looking. I noticed them during my pregnancy.
I'm in a deep mood depression and loneliness which I haven't told any one from my family about this except my husband. I just don't want to but my family in stress and worry. My husband is very supportive but he is expecting that my results will be totally benign, but for sure it's not! I feel like I got my PhD in skin cancer due to the hours I've spent in the last few months googling about melanoma and I'm really sure I have it. Instead of enjoying with my new baby I'm thinking about my death all the time and what the future had hidden for me, will I even live until the age 30? Will I be able to see my little girl growing? Only God knows.
I'm so sorry guys but I found this community very supportive and I really don't know what to do by this stage:(

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Bobman's picture
Replies 9
Last reply 3/8/2017 - 9:51pm

I think  I  finally  got  someone's  attention . 

It's  taken a pound of flesh, and some changes  in providers  to get here, but I  am more confident  now than at any other  time on this wild ride. Getting  the biopsies  I  knew  needed  to be done has been like pulling  teeth  with a couple  of  previous  dermatologists ,causing  me to venture  into stroke territory  by resisting  the urge  to choke  the s#&!  out of them. But the 3rd one may be the charm. He calls me a "special  " case. Isn't  that special ?  Like music  to my ears. With hundreds  of lesions  on my body , I  do realize  that they're  looking   for that ugly  duck, but on me it's  not ugly enough  to catch the eye of the average  dermatologist . This guy trusts my judgment .  I assured  him I am not a masochist , and  if I  say it's  changing , it needs to go away. Of course  I  have all the pathology  to back me up,and I   have found  8 out the currently  10 melanomas . He wasn't  a believer  at first , but after his full body examination  last week , which was thorough , he said everything  looks "okay  ". I pointed  to my belly  and said how about taking this guy off right here. He said it didn't  look worthy , but would if it made me feel  better .  That was number  10. He called  me yesterday , picked my brain ,and was definitely  now intrigued . How sweet it is.

Epidermatropic  metastatic  melanoma . Word's  I  would  have  never  heard this life were it not for  this  forum .  A thoughtful  reply to one of my posts  awhile  back brought  it up ,when I was freaking  out about my 6th,or 7th,or 8th primary .  Known as the "InSitu mimicker " ,epidermatropic  metastatic  melanoma  is a very rare for of melanoma . Well  documented , I  started throwing  this big word around  trying  to get someone  to at least rule it out,since it's  criteria  is fitting  me like a glove these days . I finally  found  a pair of ears. Although  my dermatologist  has not heard of it,nor would  I  have  expected  he had...but now he's  curious . Since it is something  that can be tested , and ruled out. Toss in a couple  hot pet scans , a hot MRI from the past year,and I'm  off to the races!

What a relief ! 

Aloha , 

Bob

We are one.

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BrianP's picture
Replies 2
Last reply 3/5/2017 - 1:59pm
Replies by: 45_dps, Ed Williams

Sounds like these trials would be available for stage III resectable patients.  I wasn't aware of these type trials being available in the US.  Would be an interesting option for some patients if they were available.

http://www.oncologytube.com/video/neoadjuvant-therapy-in-bulky-stage-iii...

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CindyCo's picture
Replies 5
Last reply 3/6/2017 - 12:19am

Mom's CT shows progression to liver and lungs, in addition to her inguinal lymph nodes.  We are very devastated.

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Anonymous's picture
Anonymous
Replies 4
Last reply 3/25/2017 - 10:20am
Replies by: sandys, UBContributor, Anonymous

Hi,

I was diagnosed with stage 1a Melanoma in December and had a WLE.  It was located on my upper right back. Tonight I noticed a lump on my left temple, just by my hairline. It is just under my skin, about the size of an m&m. Could this be a swollen lymph node or in any way related to my melanoma?  I am not sure if I am being ridiculous  or reasonable to worry about this.

Would be so grateful for any replies!!

 

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Stlmag's picture
Replies 2
Last reply 3/15/2017 - 2:06pm
Replies by: Stlmag, maryb-z

Is there anyone receiving Imylgic injections  ?       Husband got first treat today. Only 6 people in Mississippi that I know about.

 

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evuasm's picture
Replies 11
Last reply 3/16/2017 - 8:38pm

Hello Everyone,

Unfortunately, I am new to this forum!

I have this longitudinal mole (8mm x 2mm) on the sole of my foot between two toes. I remember having this mole for at least 3 years (I am 38 btw). While looking at the ABCDE, the only thing reassuring is I feel it did not change in 3 years...

Recently, my stepfather got diagnosed with advanced melanoma and I started to google this and could not stop thinking about the mole under my foot. After more and more googling and more and more panicking, I called a dermatologist and got an appointment within 48 hours.

He looked at my lesion, said it was atypical and irregular and said that if it was him, he would biopsy it for further investigation. He did a punch biopsy and I was out of the building 30 minutes later.

I have another appointment in 2 weeks and he will tell me the results, and now I am panicking and I cannot think at anything else.

I wonder if there is a lot of benign lesion diagnosed after a biopsy, or most of them are melanoma. I also wonder if he made a punch biopsy because he was pretty sure I had melanoma or instead, because he can't know and just did a biopsy to rule it out.

Anyways, I wanted to express my feelings and maybe have a bit of support! ;) As soon as I have my result, I will post it here!

Have a nice day!

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jennunicorn's picture
Replies 50
Last reply 3/11/2017 - 2:54pm

I always love to see some of my fellow melahomies post good news on here, brings a bit of hope to our world that can be full of doubts and uncertainties. 

So, yesterday I got some good news of my own after my PET/CT scan on Tuesday... the left groin that we knew for sure had a recurrence of melanoma is now showing NO ACTIVITY on the PET scan and much smaller on CT!

The other lymph nodes that had been lighting up but we didn't really know if they were lighting up because of melanoma or because of the treatment (can't go around poking my whole body with needles to find out if every area that lights up is positive for mel) are now either not lighting up at all or have much less uptake and are all smaller in size. My spleen is also back to a normal size.. it was quite enlarged at my last scan.

This is the closest to NED that I've gotten in quite a while... doc won't throw that term out there just yet, but perhaps after the next scan in a few months I'll be able to use those lovely letters again. Continuing on Nivo only infusions every other week for a year... as long as everything continues on the right path.

As far as the anemia mystery, still don't have an answer for that. I am still showing as anemic on my blood tests. No iron deficiency. Reticulocyte count is normal, so it's not hemolytic anemia. Waiting on my B12 blood test results to see if I'm deficient in that. For now, the mystery continues. But, I feel pretty good.. besides my joints making me feel like an 80 year old some days. 

Enjoy the weekend everyone, sending love and hugs to anyone who needs a little extra right now.

Jenn -  IIIC - Ipi/Nivo (Yervoy/Opdivo); now on Nivo maintenance

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aziza's picture
Replies 4
Last reply 3/6/2017 - 10:15pm
Replies by: Anonymous, aziza, CindyCo, Bubbles

I am quite new here.

We are Thai and live in Thailand.  My mother, aged 77, found a breeding so she went to see an OB GEN doctor on January 13, 2017, at a small hospital. She had a biopsy and a results shows a malignant mucosal melanoma. She was referred to an OB GEN doctor at Chulalongkorn University Hospital. The doctor confirmed that the melanoma is at vagina and cervix. Not sure it started from cervix or vagina.

She had an operation on February 6, 2017, removing her ovaries, tubes, uterus, some upper part of her vagina. However, the doctor said he could not remove all dark spots in her vagina that he found during the operation.  The specimens have sent for more biopsies for BRAF and blood test for MSI. 

She will have a radiation (external beam) next week, which will last almost 7 weeks.

Melanoma is such a rare case in my country.  Mucosal Melanoma is even worse.

In case you have a similar case to my mother's, please advise me in what treatment that works well. Or if there is other methods that work, please let me know. 

I also have biopsies results.  Can I post them here? So you can help me.

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youngann's picture
Replies 9
Last reply 3/3/2017 - 1:28pm

I was diagnosed stage 3 in May 2016 and had a brain MRI before my CLND. When I went to see my onc last week, I asked if I should have a repeat MRI and she said that she doesn't recommend them unless a patient is showing symptoms.

After thinking about it, I wondered if it wouldn't be better to have them regularly before there are any symptoms...what are your thoughts on this? Are brain MRIs normally recommended on a regular basis for stage 3, or is it normal to wait until symptoms appear?

I have been having regular chest, abdomen & pelvis CT scans.

Thanks,

Ann

http://www.cafepress.com/daybreakdesigns

Home of the original "Crappy Shirt"

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