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.

Expand/ Collapse Topic
 
Replies By
View Topic
Anonymous's picture
Replies 6
Last reply 6/10/2015 - 8:44am

My husband was diagnosed last month with stage IV BRAF melenoma. No primay site found, but it is in his duodenum and may have some spots on the mesentery of the small bowel.  He had one lymph node removed from  under his left arm that was also BRAF melanoma.  He has just started on his chemo meds. He is taking Tafinlar + Mekinist.  3 days in he is doing well with it and so far has a wonderful appetite.  Any one with any information or experiences with these two drugs?

Login or register to post replies.

Eileensulliv's picture
Replies 6
Last reply 6/10/2015 - 12:46am

On Thursday, I had a CT scan before my usual doctor appointment and Nivo treatment. The doctor said a preliminary look shows I am down to two tumors... One in my lung, and one in a lymph node in the mesentery bowel. Both tumors have shrunk approximately 50%! in a few days I should have the final report with actual measurements and tumor count, but what I heard in the office was incredibly encouraging news!!! 

I then went for my treatment. They give me a bag of Benadryl first, since I broke out in hives during my second treatment. Halfway through the Nivo, I woke up and vomited, had a fever and erratic heartbeat. I didn't really realize what was going on because I was so out of it. The fever and nausea persisted through Friday. Now I am just dealing with the usual GI issues. The nurse called me the next day and said they think the reaction was due to the funky cocktail mix of CT contrast, Benadryl, and Nivo on a fairly empty stomach. She said they are also considering reducing the Benadryl dosage, which would please me! I hate sleeping through all of this and then feeling groggy for hours...

 

I'm still on cloud 9 though! I feel like I won the lottery!!!

Eileen 

Login or register to post replies.

Gordknight's picture
Replies 7
Last reply 6/10/2015 - 2:45pm
Replies by: Aundrea, Gordknight, Anonymous, Squash, Janner

Hi everyone. Sorry to be a bother. I can tend to be a hypochondriac but advice here always helps. I was diagnosed with stage 1a melanoma clark lv 2, .22 mm depth, no ulceration and less than one mitotic figure on the left side of my neck back in october 2014. Had wle done in november (initial lesion was removed with shave biopsy with clear margins). Wle excision tissue also came back clear. Since then i had one small issue where a part of my wle bled and needed re- excision to be safe. Came back with some abnormal squamous cells but derm said its nothing to be concerned about. That was a month ago.

Now i have found a hard lump a bit above and back behind my wle scar. Not sure if its a lymph node or what but i think it is. My dilema is im out of town till august first. Im going to go see an insta care doc today but dont know how much help that will be. How concerned should i be? Hard to not freak out and let my mind go to dark places.

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 0

I have not heard from Robbier for a long time. I would like to know how she is doing.

Login or register to post replies.

liberty04281's picture
Replies 5
Last reply 6/8/2015 - 9:04am

After finishing Yervoy treatment I had my second scan. The first scan after I received the last infusion showed a small increase of one nodule in my lung, and there was nothing new. Seven weeks after I had another scan, which was good this time. Almost all of a few nodules that I had in my lung shrank, almost disappeared. My oncologist said it is a very good news, and I am among 10% of the patients who had this good redpond.
It is a good news, and I am very hopeful. The next scan is in two months
Liberty

Login or register to post replies.

273c's picture
Replies 3
Last reply 6/7/2015 - 9:12am
Replies by: Bubbles, 273c, mrsaxde

My husband had surgery (lymph node tumor and one between liver and kidney) last week so at the moment he is NED.  We are waiting on pathology and some recovery from the surgery before we head down the path of IPI, ipi/Nivo or maybe just Nivo.   

 

So here is the wildcard, my husband has been itching for months.  He also has several patches of vitiligo.  Itching to the point of a precription antihistamine.  The day after his tumors were removed the itching stopped but by day four after surgery it has started up again although not nearly as bad. 

 

Anyone have itching caused by the melanoma?  Anyone else with pre-immunotherapy itching? What happens when you add in an immunotherapy that then causes itching?  How do you tell if the immunotherapy is working if there are no tumors and you are already have itching/vitiligo? 

 

Thanks,

Kathy

Login or register to post replies.

Just saw this: http://www.bidnessetc.com/41406-amgen-inc-amgn-tvec-gets-green-signal-fr.... Sounds like another step towards virus therapy.

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 5
Last reply 6/8/2015 - 12:27am
Replies by: casagrayson, Anonymous, 273c

I apologize if I'm overreacting and I also apologize for taking everyone's time incase this is a false alert.

So, I'm an 19 year old boy/guy who lives in scandinavia, Just 10 days ago I noticed a little brown spot on my leg, it sorta looked like a wannabe mole of some sort. It was about a milimeter wide I believe, but over the past 10 days, it has grown and today it started to bleed.

It feels somewhat dry and I can feel that it's not just the skin, it's below the skin aswell, when I squeeze it I can feel that it goes about 1 - 1.5 cm down into my leg, as if it has roots or something. Everytime I squeeze it, it bleeds, I've washed it with alcohol to prevent it from getting infected, it doesnt hurt nor does it itch.

And being the curious type, I couldnt resist but to google this which lead me here, I found some pictures that were alike and some that were not but they all kept highlighting the name "melanoma" which has been branded into my mind now.

I havent been able to sleep all night due to the fear of it being melanoma and the more I google this the more anxious I feel about it, and since it's a weekend and hospitals are closed unless it's an emergency, I can't get any professional feedback other than post images to people who are experienced with this and hope that some of you can guide me. 

Here are two images of what it looks like on my leg. Not sure if its safe for work, it might look a bit nasty... 

 

http://s5.postimg.org/8et7phtqe/20150606_092536.jpg

 

http://s5.postimg.org/bzp38py9y/20150606_092528.jpg

 

I can post more if it's necessary, sorry for the bad quality. I don't really know what else to say, does this look like melanoma? and if it is, what stage could it be at? am I in danger? How long does it take for it progress/evolve? I'm extremly anxious about this,  I'm sorry.

I know most people here have gone through things I wouldnt dare to imagine and I really admire you all for your strength, I thank you all in advance, and I'm really sorry for taking your time.

 

Here are a few notes that could help:

- I'm pretty healthy

- I don't use any chemicals on my body nor do I go outside often, i'm rarely exposed to the sun.

- When I was younger I used to have a skin disorder which made my skin lose its pigment/it turned white, so they had to do UV treatment which cured me.

- Nobody in my family is known to have suffered from cancer or any sort of cancer as far as I know.

Login or register to post replies.

arthurjedi007's picture
Replies 6
Last reply 6/8/2015 - 7:35am

They cancelled the radio frequency ablation I was supposed to have Wednesday. It was to burn the mass in my spinal canal at the t10 level before it gets like last year when it almost paralyzed me. Also doing some cement and things. Instead I'm to see a surgeon who wants to remove the mass and that vertebrae. Last year they couldn't do the surgery because the artery supply the tumor also supplies the spinal cord. Also last year they commented they would have to use long rods because of the radiation which now is more like every vertebrae I've had radiation. they said they cancelled because the ablation could not get all the cancer. My doc had told me radiation at best gets 80% so I was already expecting this to be similar.

The recovery from ablation should be at most 3 days. The recovery from regular surgery I'm thinking could be months or never. So for ablation I would still be ready for the trials if I can get in. With regular surgery I could not do any trial until recovered. Currently I'm on pd1 for over a year but every scan has showed some stuff keeps growing and last scan had a new tumor of 5 by 4 cm on kidney.

I had cryo ablation scheduled at mayo and like an idiot when I met the local doc I decided to cancel that. I've since got that rescheduled for the week of the 29th. Cryo is freezing the stuff plus they will do some cement and things.

So I think I know I should get to mayo and get the ablation done rather than doing the regular surgery. But I'm not sure. It would be awesome to be recovered from the regular surgery and not have to worry about thst t10 paralyzing me. But then what about these huge rods that span many vertebrae. Also the cancer seems to grow rapidly sometimes even on pd1 so what shape would I be in.

That area has already been radiated twice but I'm waiting to hear from my radiation doc anyway to see if it can be done again.

So I'm not sure what to do? Any thoughts?

Artie

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 5
Last reply 6/25/2015 - 7:35pm
Replies by: natasha, casagrayson, Anonymous

Hello,

i was just diagnosed with melanoma a few days ago. Had a mole that I thought looked different and went to a dermatologist. He told me it didn't look like anything but that he would remove it so that I could be rest assured. Got a call 5 days later telling me it was melanoma. I am devastated. My husband and I had plans to start trying for a second baby this summer (have a healthy 1.5 year old). I have no idea what stage I am. I have to go for MOHS surgery on the 19th of June. I'm really hoping I caught it early but I keep wondering how long it's actually been there as cancer. And I keep reading about future pregnancy causing even stage 1 melanomas to metastasize during prenancy with moms ending up with stage 4 shortly after delivery. As if a cancer diagnosis wasn't enough, now I may not be able to have more children. If anyone has any experience dealing with this or any information on the surgery I would greatly appreciate it. I'm still in shock and don't want to think of all of this:(

Login or register to post replies.

Hi everyone

I'm a stage 4 melanoma patient from Denmark having been on the BMS Ipi/Nivo phase 3 trial (checkmate 067) since Jan'14 ... and with amazing results!! I was declared NED already by Aug'14 and have experienced next to no side effects !!! as Im NED and still on the trial my considerations are for how long to stay on the drug (assuming im not even on the trial leg which only receiced Ipi during the first 3 mths:-) ... do any of you have information about or examples of patients having stopped anti-PD1s (Nivolumab or Pembrolizumab), then had a recurrence, started on anti-PD1 again and then seen further disease regression ?

Best regards

Claus

Login or register to post replies.

Anonymous's picture
Replies 2
Last reply 6/9/2015 - 4:21pm
Replies by: msrover06, Janner

In Feb. I was diagnosed with a melanoma in situ on upper left check just underneath my eye.  My dermatologist recommended a wide area excision done by a plastic surgeon, and I agreed. It was done, but the path report returned with a report that the margins were not clear.  Here are the comments:

"Mart-1 stain reveals irregularly distributed nests, confluent solitary melanocytic proliferations as well as intraepidermal pagetoid spreading, consistent with melanoma in situ (lentigo maligna).  Inked margins are narrowly clear of melanocyctic lesion (peripheral margins from both lateral sides are les than 1 mm to junctional melanocytic proliferation).  No definite invasive lesion is identified in the sections.  Additional margins are recommended if clinically feasible." 

I went to  Moffitt Cancer center where I saw a surgeon for a second opinion.  He suggested another surgery using "Slow Mohs" to insure all margins were clear.  That may leave extensive scarring due to the location near the eye. 

My dermatologist has recommended just waiting, keeping an eye on the area, and I already go in every three months, as I am a 66 year old who has spent a consider time in the sun growing up and have a lot of skin damage from such.  My mother and a sibling both had melanoma (my mother stage 4, dying eventually from it), my sibling stage 2, with no recurrence yet.).  

I am torn as to what to do.  Anyone have experience with another excision? 

 

 

Login or register to post replies.

Happyjim's picture
Replies 2
Last reply 6/5/2015 - 12:16pm
Replies by: Happyjim, Janner

So I had a blood blister like lesion on my left buttock (never seen the sun obviously) that came from the site of a rather innocent looking small mole. The lesion got to 4.5mm at its widest, 3mm at the narrowest. To be honest I have no idea how long it was there as it was slightly off the side of my butt. It could have been months but more likely weeks.

Yesterday I had it removed, he excised around it roughly a centimeter and to a depth of a couple of millimeters. He is not even positive it is melanoma but he said a flat out no when I asked him it was nodular, can i trust his confidence without pathology? Would nodular be obvious enough?

thanks for letting me vent. So anxious I can barely function.

Login or register to post replies.

Anonymous's picture
Replies 2
Last reply 6/8/2015 - 5:09pm

Hi!

I just read this article and was interesting to me, specially the last part. It says that SLNB doesn´t bring any survival advantage, neither chemo-, immuno-, or radiotherapy has been shown to provide a survival benefit.

It confused me, I know people who have been under lymph node dissection and adjuvant therapy and today are still NED. I know NED is very subjective, but a NED people could be 'CURE'? I mean why if all melanoma cells were killed by the adjuvant therapy? Or is it always a time bomb?

Here is the link of the article: http://www.practiceupdate.com/content/sentinel-lymph-node-biopsy-in-mela...

 

 

Login or register to post replies.

Ava Jean's picture
Replies 3
Last reply 6/5/2015 - 5:35pm
Replies by: ldub, Janner, Anonymous

Hello all, 

I'm 34 and was a diagnosed with melanoma in situ just a couple of days ago. The dermatologist told me that it has been completely removed but scheduled me in for a WLE in four weeks' time to be doubly safe. I consider myself very fortunate to have discovered it at such an early stage but am nevertheless shocked - and very frightened - by the diagnosis. I am very anxious by nature and have an 8 month old baby who I am currently looking after while on maternity leave. This unfortunately leaves me a little bit too much time to think and dwell, which has taken me to some very dark places. 

I was hoping someone could offer some words of wisdom/comfort that would hopefully help me put a little perspective on situation and cope a little better on a day-to-day basis.  

 

Thank you, 

Lisa

Login or register to post replies.

Pages