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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Anonymous's picture
Anonymous
Replies 7
Last reply 1/20/2016 - 5:22pm
Replies by: Scooby123, Gene_S, emagdnim83, Anonymous

My husband has been fighting Melanoma since 2011. It was diagnosed stage 3B but progressed to stage 4 in 2014. Overall he has been successful, killing 14 metastasis in 5 years. But we found out last week despite his most recent treatment the cancer spread to his lung. He's feeling very defeated and I understand why. I've been here with him through the entire journey. But lately he sleeps until 5 every day and has no interest in taking care of daily tasks. He's had a short fuse and flips out if I don't do something right or try to wake him up or suggest he does anything. We are waiting to see if anything more can be done, so I'm sure it has a lot to do with the stress. I just need to know I'm not alone in dealing with this. I hope the short fuse gets better and we don't have to have this anger become a new norm. It is difficult to bear!!!

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Anonymous's picture
Anonymous
Replies 7
Last reply 1/28/2016 - 11:22am

Can anyone tell me if during your IL-2 treatment while receiving infusions the week in the hospital, if you needed someone there with you?  My husband will be starting a new trial and while in the 5 days I wont be able to be with him. I worry that he will feel too sick at times to be able to either ask the staff for things he needs, or to get them himself....like a snack or something.

He doesnt want me there as he says he will be well taken care of and feels more at peace when I am home with our children. The hospital is 3 hours away and he doesnt really want either of parents there either. They are not a good support system for him. Instread of focusing on his needs, etc. they are torn and apart and so distraught (they are both in their late 70's) over this they upset him more.

Anyway, I would just like to know how feasible it is for him to do this without me?  I dont want to be worried sick if I am not there, even though I can be there if need be at any moment.

thanks.

 

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karima49's picture
Replies 2
Last reply 1/20/2016 - 8:43am
Replies by: Rita and Charles, Mat

Hi there. My mother was just diagnosed with Stage 4 melanoma in December 2015. It has spread to her lungs, liver, thyroid and just recently her bones and spine. She has been on the Mekinist and Tafinlar combination for 2 weeks now. I personally haven't seen much of a difference but she said she definitely has. She says she feels more aware. My question to you all is, has anyone been on this combiation of meds and also used the cannabis oil? I have researched the oil itself and it has done some amazing things. I got my hands on some (which is not easy) and my mother is scared to try it that it may interfere with her meds. I'm trying not to give up hope and want her to try anything there is that may help. Can anyone that has experience this please respond and let me know if we should try this or ask the doctor or...? My mother is my very best friend and I'm so scared of losing her. Thank you. 

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btcedarr's picture
Replies 5
Last reply 1/21/2016 - 10:20pm
Replies by: btcedarr, Anonymous, AshleyS

Hi. I am new to this site and have been following it awhile before posting. I was diagnosed on 10/13/15 with melanoma on my calf after a shave biopsy. The mole had been there my whole life and I saw no considerable changes, never itched or anything, but the dermatologist suggested it be biopsied during my annual exam. I had a WLE and SLNB on 10/22/15. I am healing well with after a bad cellulites at the SLNB incision and some stitch spitting at the WLE. I was staged T1b, at least .59mm, mitotic rate of 3, breslow III/IV. Nevoid and desmoplastic. WLE had clear margins and SLNB was negative. I now have checks every 3 months.

My question is in response to some posts of very similiar experiences and then finding it in the lymph nodes years later. If it wasn't there initially, is this usually another primary or it was missed initially. As you can tell, I am confused.....

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Scared99's picture
Replies 4
Last reply 1/20/2016 - 6:15am

I wanted to thank those of you who responded to my biopsy question.   I was hoping for a few more pieces of information from those of you with melanoma knowledge. 

 

Since my dermatologist visit in July I have been obsessing over my moles and regretting many past decisions of mine.    Most of my moles are very dark and in the skin,  When I google them it appears they are junctional nevus.  I had one biopsied in July and it came back very mild atypia.  I am nervously waiting my two other biopsy results from this week.   These moles  started appearing in my 20's and I continue to get them popping up in my 30's.    How much higher risk does this place me for melanoma ?  I have about 7 of them about the size of an eraser or slightly smaller and around 100 very tiny ones that you cant see unless you are on top of me.   I had one derm tell me i was very high risk and want 6 month visits.   Another tell me not to worry about them and wanted to see me every 3 years and the last one told me I have a slightly higher risk and wanted to see me every year.  

 

I am also getting conflicting info on the link between melanoma and the sun.   I had a ton of sun exposure my entire life.  I usually get a slight burn in the spring and usually get very dark by the end of the summer.   I also used tanning beds in my 20's.     I feel like this has also raised my risk significantly.    No one in my family has every had melanoma.  

Does hair color, skin type and eye color elevate the risk as well ?   I have very dark brown hair,  dark green eyes and am unsure of my skin type.   I do not think I am fitzpatrick skin type 1  or 2 as I do get very dark...  I might be a fitzpatrick skin type 3 ?   

Thank you all.... I am looking for any info you all can provide.

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Over 2000 folks come together!

http://melanomainternational.org/safefromthesun/

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stevecathy's picture
Replies 4
Last reply 1/16/2016 - 12:47pm

My husband had reaccurence Mets in transit found at 3 month dermatologist check. He had just finished 4 infusion of yervoy. Went back to ctca in Chicago Wednesday this week , oncologist did ct scan now has small nodule in right lung too small to biopsy. Now he is to start mekinist and tafinlar hopefully next week. Wanting to know thoughts and anyone experience with this combo treatment. Thank you and blessings

Cathy Jewell

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Anonymous's picture
Anonymous
Replies 2
Last reply 1/17/2016 - 10:16pm
Replies by: Anonymous, jamieth29

I have a recurrence in my groin area which they wont operate on as I am on keytruda with mets in a few different places in the body. I dont really want to do radiation but I dont think there are any other options.

Does anyone have experience with radiation to the groin ie number of treatments, side effects, strategies to help with coping.

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Anonymous's picture
Replies 5
Last reply 1/15/2016 - 10:46pm
Replies by: KMick, Azcaddyman, Anonymous, Empire

I was just diagnosed.  Dermatologist excised.  It was 4mm, which I understand is relatively large.  Have been referred to a Surgical Oncologist.  I expect discussion/suggestion of SLNB.  How soon should this be done?  What is the typical wait for such a test?

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Anonymous's picture
Anonymous
Replies 6
Last reply 1/26/2016 - 12:35pm
Replies by: _Paul_, Nanners10, Anonymous, jennunicorn

Hello

I was on this board almost two years ago and it was very helpful. Thank you so much for that!! Was looking for Melaoma Specialist in SF Bay Area for my mom.

 

Mom went to Stanford and had a WLE on her right leg almost two years ago (where melanoma mole was) and SNB. The SNB came up negative. The past month she has had swelling in right leg (swelling has since gone down with more exercise and water). HAs had slight swelling ever since SNB so was not to concerned but it did get quite bad and her primary care DR sent her in for sonogram to rule out DVT and do a more focued one on lymph. What has come back is that one inguinal lymph glad is enlarged with blood supply and highly suspicious for mailiganancy.  The Melaoma Dr was suprised and said it would be very rare based on her original melanoma.  From what I have read on the board and overall it can happen. My mom is upset and concerned about her care at Stanford.. who she should be talking to and what next process is.. As of this point trying to get ultrasound guided biopsy, but also considering second opinion with UCSF. Though not sure would see her till recuurecence confirmed? My other Question include  -At this point should primary dr be guiding care.. she has talked with Melanoma Dr? -Is single Biopsy the way to go or should a PET scan be done first? 

 

Any input appreciated!!!!!

Thanks!!

 

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Anonymous's picture
Anonymous
Replies 4
Last reply 1/17/2016 - 2:57pm
Replies by: Anonymous, Ed Williams, geriakt, Scooby123

Ive been sick since dec 31st with a really bad cold that I caught from my daughter.  I actually tested positive for the adeno virus. Had a fever for  8 days straight and was in the hospital for 4 days. Last friday was my last fever until last night. Started feeling week and took my temperature and it was 103. I took a fast tylenol and within a hour was back down to 98. My question is on each side of my neck I have a swollen lymph node maybe the size of a marble that are a little tender. I had a ct scan of my neck in hospital and all they seen was inflammation and congestion. Is this anything to worry about or is this just from my body fighting off infection. I have Yervoy scheduled for monday. Will I be allowed to do Yervoy or will the yervoy push me over the edge and make me super sick. Can somebody do yervoy with a cold? Thanks

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Scared99's picture
Replies 3
Last reply 1/15/2016 - 7:52pm
Replies by: Anonymous, Scared99, Janner

Hey guys and girls,  I am new to the forum and apologize but I did not know where to turn.   Let me start by saying I have not been diagnosed with Melanoma.   I am 35 years old in good health.  

My concern is in July of last year I had my first full body scan since 2005 with a new Dermatologist.   I have always had alot of moles.   On my torso I have 7 that are around 4mm  and about 60-100 tiny pin point sized moles.  I was an idiot in my 20's...  I used tanning beds during my 4 years of college and 2 years after.   I sun bathed and rarely used sunscreen when outside.  I would only burn the first sun after the winter so I was ignorant and did not think I needed sunscreen because I would get very dark.  I regret all this now and it makes me sick.   My dermatologist in July commented on my moles and said that I had several funky looking ones and I need to consider having them removed at some point.    She biopsied one on my back that I never noticed and it came back very mild atypia.   She called me in and explained that I have a very high risk for Melanoma because of this atypical mole  and would need checkups every 6 months.    I had several noticable moles on my torso and she did not comment on them at all. 

Fast forward to this Dec.... I made an appointment with a new dermatologist closer to my home.   I had another scan with him.   He photographed a mole on my leg and said it was an inflamed nevis but wanted to watch it.   He scanned all my moles and said everything looked good.    He wanted to see me in 3 years,,, unless I noticed a change in the mole on my leg.   I was somewhat in shock after my visit in July and asked him if I had any atypical moles.   He said the only one that I noticed is the one on you stomach it looks somewhat atypical.   He asked me when I noticed it and I said I remember freaking out about it in 2003.    I went to a derm back then and they did nothing.   He said since it has not changed since then keep an eye on it and if you notice anything please come back in.    So the two differing attitudes of my dermatologist's confused me.    I made a 3rd appointment which I had Yesterday.

The third derm did a body scan on me.  He commented on my moles and said you know you have a good deal of moles.  Keep an eye on them.    He went right to the mole on my stomach and told his nurse we will get this one off.     He did not ask me about the history of the mole or anything.     This alarmed me and I asked him does this look like melanoma ?   He reponded it does not scream melanoma but it looks different from your other moles so I want to investigate it..  So he measured it and shaved it off.    It was 4mm directly above my belly button.    Right now I am confused and scared about the whole situation.   I did not notice ANY change in that mole since I first noticed in in 2003.    I am playing the what if game at the moment and making myself sick.    THe derm in July did not even pay it any attention,  the second derm in Dec made a fleeting coment on it and this derm wants it off.     Should I be alarmed about this ?  I am worried that this has been a melanoma for along time and no one did anything .

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Anonymous's picture
Anonymous
Replies 11
Last reply 1/17/2016 - 6:06pm
Replies by: scots, AshleyS, kylez, G-Samsa, Anonymous

Has anyone recently been through this treatment? I have read several articles/stories about this treatment but they all seem to be 3 to 4 years old so I do not know where they are now. I'm looking at the trial at NIH. I'm looking for some other treatments because ippi/ nivo did not work for me and I'm braf negative. I'm also looking at another trial at Duke and I'm working on a consult at MSKCC for a different opinion. I'm leaning towards the trail and if that treatment dose not work then I will try the the TIL treatment.

thanks 

scot

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Azcaddyman's picture
Replies 6
Last reply 1/15/2016 - 11:54am

I had a large melanoma lesion on the back of my neck (it's the first picture in the melanoma picture gallery). I was diagnosed through a small shave biopsy (maybe 20% of the surface. Barely a scratch). The pathology report showed no clear margins. Depth of biopsy was only .66mm deep. So my tumor was at least that deep. No mitosis, nothing remarkable on the biopsy other than ssm at least .66mm with signs of regression present at base. Again this was only a small spot sampled on a large (3" x 1.5") lesion. However all the data my pathologist has go go on put me at pt1a. I was referred to a head and neck surgical oncologist. She scheduled my wle and decided we would go ahead with a slnb due to the incomplete staging from partial biopsy. 

 

I had my surgery yesterday. I look like I was attacked by a shark. Again this was a large lesion. The surgeon  cut the back of my neck ear to ear and used a flap to close the wound so I have this nasty "U" shaped scar under the line from ear to ear.. But that's another story.

 

Here's my issue/question. After they injected the radioactive tracer I was told to move around/exercise for 30 min followed by 30 min laying in that nuecular imaging machine (don't know what it's called). I was told the dye wasn't draining from the injection site. I was given another shot and made to rub the area for 30 min. Back into the machine. Still not draining (nurses were accusing me of not exercising or rubbing correctly). Now I was made to walk the hall of the hospital with squishy balls in my hands and asked to exercise my arms and hands while I walked back and forth. I was getting quite the amused audience. So yeah I felt like a fool. Now back in the nuecular lab I was told the Dr wasn't allowing me to leave there until they found the right nodes. Back into the machine. Still not draining from injection site. Now they change their mind and tell me the Dr will just use a handheld scanner in the or to find the node. After surgery my Dr said she couldn't positively id any sentinel nodes. She did mention that there was some tissue showing increased radiation (which she did cut out ) however she wasn't even sure it was a lymph node let alone the sentinel node. 

 

I asked if that would impact her ability to correctly stage me. Remember the inadequate initial biopsy already made that a challenge. I was told she could clinically stage me even without the sentinel lymph node results. 

How? Isn't the definition of stage III lymph node involvement? I asked if they're would be any follow up imaging (pet-mri-ct) performed. My Dr said they don't do that. If she was suspicious enough she would use a sonogram to look for enlarged lymph nodes. 

Important information: I'm also a c.o.p.d patient and on a high daily long term dose of prednisone. This is the same drug used to treat lymphoma because it reduces swelling in the nodes. Knowing this how effective could a sonogram even be?

Is this a problem or am I worried for nothing? Anyone else experience a failed slnb and if so how did your Dr's handle it. Should I run like mad to another Dr? I'm limited on what my insurance will cover and I already chose what should have been the absolute best option available to me. I'm being treated at fox chase cancer center in Philadelphia PA. 

 

Oh p.s. 

Immediately adjacent to the scar is a spot (lump, bump) that has been rapidly growing and evolving that I already suspect could be modular melanoma. Of course this was completely ignored and now would be a nightmare to treat given its now moved location adjacent to a scar line. Although I admit this could be simply my own paranoia. Although the evolution is apparent thanks to the many pictures I was taking to chronical my melanoma. 

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katieherwig's picture
Replies 1
Last reply 1/15/2016 - 11:43am
Replies by: marissav

I'm doing some research on taking Plexus and would appreciate anyone's feedback. I'm currently on Keytruda and Tafinlar capsules. I'm considering multi vitamin, cleanse, probiotic, and the slim drink. 

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