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 1/28/2016 - 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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Anonymous's picture
Anonymous
Replies 10
Last reply 1/28/2016 - 7:41am

Just wondering what to expect for my upcoming ipi/nivo treatments. I have heard some people respond without many side effects and some with quite a few. I was diagnosed 7 years ago with a melanoma mole on my right thigh, removed it surgically with very large margins. 5 years later a lump within the same region showed up. Again, surgery very similiar to the first. At the time interfuron was an option or observation. I decided to observe. 2 years later (now) I had a lump in front of my right ear biopsied and it tested positive for melanoma. A subsiquent PET was done and one other tumor was found in my abdomen under my liver on the messentary wall about the size of a softball. Wow have things changed. Anyone else have any similar situations? Just looking for some info as not much is to be had thus far.

FYI, I was originally supposed to start on a clinical trial a couple weeks ago in Portland Oregon. It was a combonation of Ipi and IL2. Just prior the insurance company denied the treatment and said they do not support clinical trials. It sounded like quite the 1-2 punch but I hope the ipi/nivo takes hold.

Thanks so much for listening. Scott.

Scott 

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Renate's picture
Replies 5
Last reply 1/27/2016 - 2:10pm
Replies by: Renate, AllysonRuth, Janner

I had a 1.3mm melanoma removed from my thigh and microscopic cells were found in one lymph node.  They did a MRI and PETCT Scan and the results were clean except there is a gumball sized hotspot on the PET Scan on the opposite side of my pelvis where the melanoma was found.  My dr thinks it is probably metabolic activity in my small intestine but to make sure they are going to do a CT Scan to see if its solid - Has anyone had anything like this???  This waiting and worrying is hard to handle.

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faisrum's picture
Replies 5
Last reply 1/27/2016 - 1:40pm
Replies by: dnovak, faisrum, Janner, JuTMSY4

Dear Forum members,

Yesterday ( 25th Jan, 2016 ), my 7 yr old boy was diagnosed with Spitzoid Melanoma. This information is hard to absorb for me, as if this is true, this is one of the rarest case. Am originally from asia, my boy came to this country when he was 1 year old. I have a brown skin and my son is having brown skin too. He never had sun exposure. Neither my family or my wife's family has a history of melanoma or skin cancer. 

My boy had a normal looking mole and overtime it changed color. We were planning to take him be seen by doctor. But last month my boy got hurt on his mole while he was playing. His doctor's visit and diagnosis started right away. His mole was shaved off from his arm and was sent for biopsy. The biopsy result came out with a dilemma as below:

It stated: Significant atypia is noted but the degree of atypia could possibly be seen with a traumatized Spitz Nevus. This case presents conflicting features. Although the lesion is superficial in sampling, the degree of nuclear pleomorphism and immunostaining pattern are worrisome for the possibility of a Spitzoid malignant Melanoma. Despite this, a diagnosis of a traumatized benign spitz nevus is more plausible in a 7 yr old patient. Given the diagnostic diemma, the case will be sent out for a second opinion.

And as stated in the beginning, I received the second opinon that it is Spitzoid Melanoma.

Dear members, I have no clue where to start with. I live in Allentown, PA. Please advise me how can I reach out to the best facilities that can further diagnose and treat this.

May God bless you all.

Best Regards,

M.Haque

 

 

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Anonymous's picture
Anonymous
Replies 2
Last reply 1/27/2016 - 12:00pm
Replies by: Anonymous, Fen

Just recieved scan results.   I have been on ipi/nivo treatment and appear to be responding.   No major side effects.  My results look like a response so far. It's been 6 months and I feel good.   I'm interested in the thinking about the longer term durability of the treatment.   What is the likelihood or relapse or additional mets.   Thanks  for feedback.   Chris.  

Chris. 

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Okay, so I was at work today and I noticed a black dot under the palm of my hand. It's about the size and looks like a sharpie mark on my hand. I could almost swear that it used to be a freckle but i can't find any proof (previous pictures) I didn't have any pictures of my hand where the dot is. 

What im asking is: is this worth going to a dermatologist to get checked out? Could it be a blood blister I just realized i had? Or should I just give it time and see what happens from there? I am currently flipping out and I don't know what to do 

anything helps I appreciate it a lot 

please email me personally: jrvermilya@me.com

i will then send a picture as I can't figure out how to tag it in the forum. Much Thanks

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Replies by: Bubbles, Anonymous, AllysonRuth, jamieth29

Big thanks to Eric for finding and sharing this one!!!  Here's my write up and a link to OncLive's report:

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/01/nivoopdivo-now-first-line-for-all.html

That's the best I undertand it with as much history as I could find.  Hope it helps.  Happy Sunday!!!  (Love that phrase, albeit slightly adjusted, Allyson!!!)

Best to you all.  Celeste

chaoticallypreciselifeloveandmelanoma.blogspot.com

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jennunicorn's picture
Replies 11
Last reply 1/26/2016 - 6:35pm

It has been over two weeks since my second infusion. My next one is on Monday, the 25th.

Not a lot different from the first infusion. Mostly just fatigue. Not that fatigue is easy, it's made it very difficult to work as much as I'd like to, since my job is very demanding. But, it's better than a lot of the other side effects. 

I noticed for about a week and a half after the second infusion that I had days where I wouldn't be hungry. Not that I was nauseous or anything, I just noticed that my usual (very active) appetite was not there. It's back this week, thankfully. My birthday is tomorrow and I'd really like to enjoy a nice dinner and some cake!

Of course, I stay realistic knowing that things could be very different after my third infusion, but, I will continue to think positive thoughts and hope for continued ease through the rest of my treatment.

 

 

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specka's picture
Replies 7
Last reply 1/26/2016 - 3:17pm

My husband is very sore. His ankles are extremely painful. He's 30 and says he feels like he's 90. I gave him a foot massage, that seemed to help a little. Any other suggestions? He isn't a pain killer kind of guy.

Rebekah

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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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Gothikchile13's picture
Replies 1
Last reply 1/26/2016 - 7:19am
Replies by: rosa1

Hello all. My dad was diagnosed with malignant melanoma under his right arm back in June. He's had many different therapies including radiation, keytruda, and one dose of chemo. Between having radiation and the chemo he developed sepsis pretty bad. Since then he has been very confused (though he still knows who me and my family are, he's just out of it).

He's had a few brain scans and the cancer hasn't spread to his brain or anywhere else really. After they did the first chemo treatment the doctor said that he was too weak to continue chemo and recommended we check him into hospice. He is completely unable to care for himself due to the confusion and weakness in his limbs from lack of activity. I'm just wondering if there are any other options then to let him rot in a hospice center.

I know it sounds really bad and there probably isn't any hope in this situation but I'm trying to do anything I can to help him.

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Anonymous's picture
Replies 2
Last reply 1/26/2016 - 12:02am
Replies by: jennunicorn, Janner

Hi, this is my first post on here so I'm sorry if this isn't the right place for this, I'm just starting to get very nervous and my regular dermatologist doesn't have an appointment for almost a year.

Anyway, I have a family history of melanoma (my uncle passed away a few years ago shortly after being diagnosed with aggressive melanoma and both my mother and sister have had "precancerous" moles removed) and have very light skin and despite always wearing sunscreen burn very easily and have suffered several sunburns severe enough to make my skin blister. I used to be regularly checked by a dermatologist for an unrelated skin condition and she remarked I should keep an eye on a mole I have on my elbow but I honestly forgot and haven't been for several years now. A year or so ago I started noticing new moles but they were small and I didn't think too much of them. Then about 6 months ago one very small one got very itchy and started bleeding periodically for a week or two, but the itchiness has since dissipated.  Then the other day I noticed yet another new but normal looking mole (small symmetrical distinct edges etc.) so I started checking the rest of them and see that the one on my elbow is about 5mm, asymmetrical and has blurry edges, but I honestly don't remember how it looked the last time my derm saw it or if it changed. None of my other moles seem to have changed including the one that was itchy and bleeding. I called my derm but she doesn't have an appointment for almost a year and my insurance won't let me see someone else. I asked my pcp about it but they said there was no point checking it out because it isn't raised or changing dramatically. 

I guess my question is do I need to be worried and if so, enough that I should pay out of pocket to see a different derm, or is it safe to wait the year and just keep an eye on it? I'm just really nervous because my uncle put of getting his mole checked and by the time they caught it there was cancer all throughout his system...

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Anonymous's picture
Replies 2
Last reply 1/25/2016 - 10:54pm
Replies by: ldub, Anonymous

Hi 

my Dermo successfully removed 2 melanomas last year . I have not had any diagnosed before . She says I only need to see her once a year for check ups / mole mapping . 

As melanoma is life threatening I am concerned that is not enough ? My back has hundreds of moles.

Also , she doesn't take photos of my back so she is not able to compare mole changes over time , surely that needs to be done ?

Thanks 

 

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Rocco's picture
Replies 9
Last reply 1/25/2016 - 10:09pm

Just had my annual visit to DFCI in Boston.  Annual CT (chest/abdomen/pelvis)  and  MRI  (brain) were clear!   Blessed to still be here.  Still praying daily, working and living life.  Prayers and good vibes to all dealing with melanoma.  

-Rocco, Stage IV in 2005, NED in 2009, Ipi 10mg/kg responder.   

Luke 1:37

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