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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Nikkib's picture
Replies 5
Last reply 8/28/2016 - 7:07am
Replies by: debwray

Hi everyone. I am new to this forum. This week I was diagnosed with Melanoma after watching a very small change on my leg over some time. I am glad I got it checked out, as my GP didn't think it would come back as anything. My diansosis after the initial encision is Melanoma In Situ (no ulceration) supervening on active regressing compound melanocytic naevus. I was told this is good news as it is in situ. My concern is that on the report it states that the tumor was found in the top layer of the skin extending to the granular layer. it states however "in the papillary dermis most of the change comprises of an infiltrate of lymphocytes and melangophages with a small number of bland naveoid melanocytes. These changes represent active regression in a melanocytic tumor. There is no ulceration. Deeper levels wer performed which confirm the changes discribed.". This has me worried as there has been regression. Does this mean that they can't actually determine how big the melanoma was as it may have started to regress? Are they able to be sure it is insitu in this case? I am terrifed. I have been referred to a dermatologist who I see in two days to see if I will need a wider excision as the margin is only by 0.3mm at present. 

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snoopyinoc's picture
Replies 16
Last reply 8/28/2016 - 4:19am

My husband has stage IV melanoma.  Petscan showed mets in his liver, lower back, and shoulder. He had 4  combo infusion of nivolumab/ipimumab. His most current petscan showed NED. He now has to go every 2 weeks for infusion of nivolumab only. I'm writing about the side effects he has been experiencing. After the first infusion he had no side effects, after the second infusion he rashes, and after the third infusion he had rashes, severe headaches, lost of appetite, and severe fatigue. He was prescribed oral steriods which has helped with these symptoms. But recently he has noticed blood is his urine and will be seeing a urologist. We've read that long term use of oral steriods is not good for you so he has been trying to get off them. It has been almost 2 weeks since he stop taking the oral steriods. He feels constantly fatigue and does not seem to have an appetite today. Has anyone experience symptoms similiar to my husband?

Emi

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sallyandree's picture
Replies 3
Last reply 8/28/2016 - 2:50am

My significant other has Stage IV melanoma which moved from the original location (his back) to his stomach.  The melanoma has only traveled to his stomach and has not metastisized to other areas.  He has been on an Opdivo and Yervoy regimen since April (he has gone through 5 rounds).  A PET scan was done a week ago which revealed there has been no improvement, so we need to look at other options for treatment.  He is NRAS positive and the oncologist recommends putting him on molecular targeted therapy, specifically a combination of Binimetinib and Trametinib.  This has been quite a week with this news, but we are trying to hang in there.  

Has anyone who is NRAS positive gone through targeted therapy?  

Thank you. 

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landlover's picture
Replies 6
Last reply 8/27/2016 - 11:52pm

Soooo... back from the wonderful wedding of my daughter and back to dealing with M.  

I had a CT at the beginning of August which showed my previous 2 lung nodules had grown and I have a new one.  There were two present on my first CT scan in April prior to my CLND left neck.  I had been all ready to enroll in a clinical trial as stage 3C (pembro vs hi dose interferon or ipi) but due to the changes in the lung nodules I am now ineligible. 

My oncologist confered with the interventional radiologist and the IR doctor said that they could not safely do a needle biopsy because of the small size  (largest is 8mm) and location near to my diaphragm.  They want to wait 2 more months and re-CT and go from there, even though they agree this is most likely metastisis.

I have trouble accepting this plan.  I have asked about a VATs but they declined stating the invasive nature, also I asked why not just start treatment and assume this is melanoma but they will not do it without proof via biopsy.  So this puts me in the uncomfortable position of being probably stage 4 but not being able to get treatment and not being able to do a stage 3 clinical trial.

Just wondering if others have gone down this road and how it turned out for you?  I am tempted to "insist" on VATs but am not sure that they will do it even if I do.  

Thanks and wishing the best for all-

Peggy

Stage 3C, primary on neck, neck dissection May 2016.

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jvictoria's picture
Replies 3
Last reply 8/27/2016 - 3:14pm

Hi everyone.. well, I've been pretty down the last couple of months... had to be taken off the ipi/nivo trial due to side effects and a recurrence in a lymph node in my arm. Then came the news of nodules that grew in my lungs and failed lung biopsy to determine if it was metastatic.

Had full set of scans recently, CT, PET, MRI and was going to the surgeon for a chat about VAT to have the nodules removed. I'm fully thinking they have doubled or tripled since my last scan. In he comes and says, I won't be able to operate on you... you're nodules have shruken down to pre-treatment size and some are just specs now. The emotions, feeling and gratification are indescriable.

I keep on pinching myself... I feel like I'm in a dream.

It's not a cure, I still have to have scans every 3 months..., I'm having hormone issues (Pit/Thyroid). But, I lived another day... and I am thankful to all.

Thanks to all you that have followed and helped along the way. I'm not leaving. But, will keep posting and helping others as I can.

 

Juan

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JohnA's picture
Replies 8
Last reply 8/27/2016 - 10:53am

Hey folks, 

My wife has 4 brain mets and is about to get SRS next week for them at a major medical center.

Ipi+nivo eliminated all body and previous brain mets in 3 cycles, but these 4 new brain mets grew while on therapy. Bummer.

The question comes to what to do after the SRS.

I know of the data (thanks Celeste!) on nivo + SRS from the retrospective study from Moffitt released earlier this year. Basically, if you get Nivo within 4 weeks after SRS, outcomes are improved.

BUT - she's only had 3 cycles on Ipi+Nivo, so technically she could have 1 more Ipi+nivo.

Clearly, the concerns are that side effects will be enhanced in the brain by combining SRS and Ipi+Nivo, and if the side effects are bad enough then she'd have to come off treatment entirely and maybe miss the chance to have the Nivo maintenance doses.

Anyone aware of any data (experiences?) on which to pair with SRS (Nivo only or Ipi+Nivo) and how closely they should be paired in time? I imagine you want the brain inflamation to reduce from the SRS before starting anything new?

Thanks.

 

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Anonymous's picture
Anonymous
Replies 4
Last reply 8/27/2016 - 10:30am
Replies by: Gene_S, ldub, jennunicorn, Anonymous

So here it goes.... I have this mole on my scalp,always had it, it was about the size of a sharpie marker tip, well about a week ago my wife noticed it was bigger...a lot bigger, and dark,black in color and raised, so I set up an appointment with a dermatologist,got in quick, next day actually. The derm looks at it measures it, he says about 8-9mm, then looks at me and says it's benign. He says it looks fine because the edges look good. That's it nothing more, I tried asking questions, didn't let me get a word in, by that time I was pretty frustrated. He said he wouldn't even recommend taking it off because it's on my head and not really visible. He didn't give me an explanation as why it grew in size in a matter of months....should I be concerned, or am I overthinking this? Everything I read says that growth and color change is bad,I guess I just some opinions, should I get a second look at it from a different derm?

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I have been on MEK combo for 16 months and my last scan was in April and showing regression of tumors. This past week I have been having low grade fever and body aches, I haven't had this but one time when I first started meds. The pharmacist said it was rare that people development side effects this late on the meds. Does anyone have any experience with this? Or if it stopped working for you, how did you find out. My next scan isn't until April and I am concerned we shouldn't wait that long. I appreciate any feedback you can offer.

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sadlerla's picture
Replies 9
Last reply 8/26/2016 - 2:10pm

I was recently diagnosed with melanoma, 1.03mm no ulceration, Clark level 4. Dr scheduled me for a wide excision and lymph node biopsy. I haven't had so much as a cold for well over 2 years and now this. Lymph nodes are not swollen. If this has spread would I necessarily have not felt good since it would be in my lymphatic system? Is this early stages? Any advice or words to calm my nerves are appreciated.

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Shaneswife's picture
Replies 1
Last reply 8/26/2016 - 8:33am
Replies by: Anonymous

Hi

If your primary lesion is located on the left trunk and with a negative snlb on both sides, and your primary spreads to the right side lymph nodes is that considered a regional or local metastisis?

Thanks in advance.

Janis

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slh4448's picture
Replies 10
Last reply 8/25/2016 - 11:43pm

Hey everyone,

i know that there are several people who have been or are currently on Yervoy 10mg. I was just curious if you could share anything about the side effects and how long side effects lasted? I have my first infusion tomorrow morning.

Thanks all,

Stacy


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Anonymous's picture
Anonymous
Replies 8
Last reply 8/25/2016 - 10:50pm
Replies by: brewgirl68, Anonymous, Duffy's Mom, Polymath, btcedarr

My doctor told me on June 13/16 that I had melanoma. Stage 1b. I have since had it excised with 1.4cm and 2cm margins on the side and under, respectively. They say it's good news. Now my job is to be sun smart, do regular skin checks and try to figure out how to live my life with melanoma.

I am not a sun worshipper, but do love to be out enjoying activities like gardening, hiking, photography and kiteboarding. The latter is the easiest since I am completely covered in a full wetsuit, booties, gloves and helmet.

Since getting this diagnosis I have been afraid of the sun. I wake up in the morning and my first thought is "what can I wear that is safe and not too hot?"

I am weeks away from retiring. My husband has been patiently waiting for me to do so. We are all set to carry out our long prepared plans to travel in our RV through the southwestern US national parks and open areas. Now I am scared to do what we have worked so long to do. We are looking into having window film put on the RV windows to screen out UVA/UVB rays. Hopefull that will help and give me a safe shade place.

My question is could someone please, please tell me about clothes? I have spent more money on SPF clothing than on clothing in years.  Does everything have to be rated SPF 50+ to protect me? Plus, where can you buy SPF clothes besides on line?  Does anyone know if the Sunguard Laundry additive really works?

There must be a way to do this, but I don't feel at all confident about how. I don't want to make mistakes, due to my ignorance that will cost me my life. Any help will be deeply appreciated.

 

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stevecathy's picture
Replies 2
Last reply 8/25/2016 - 2:08pm
Replies by: stevecathy, Andrew1725

I am looking for thoughts?? Short version of my husbands journey. Diagnosis July 2015 , 3a . Originated on 4tg toe which was amputated. Lymph node disection 4 nodes positive 1mm or microscopic. Completed 4 infusions of yerovoy. Right after completing 4th dose , had 2 Mets in transit on thigh. So then ctca started mek/taf combo. He is still on mekinist and taflinar half dose since January. So far had 2mm and 5mm in lung , 5 mm gone in March 2mm still there June. Now last week's scan 2mm still same and reading states likely scar. With this we are over joyed with relief. Dr. Still want to continue combo. My mind wonders if he was responder to yerovoy as I read many have Mets in transit. So I have to wonder did ctca give enough time and is combo over kill. OK, this is not short , but my mind is always on overdrive. Just looking for thoughts. Thanks everyone

Cathy Jewell

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...so says a recent study.  I know sentinel lymph node dissection (SLND) is a hot topic and difficult decision for those of you recently diagnosed.  I put up a post today that includes the abstract of this recent study, links to prior posts re the odds of having a positive sentinel node as well as another that addresses the murky recommendations for and against CLND (complete lymph node dissection).  SLND is done with the needed wide excision, while the CLND is done later IF that is what you decide to do and is a seperate, different,  procedure.

So if any of that interests you, here's the link:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/08/sentinel-lymph-node-disection-important.html

Wishing you all my best.  celeste

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