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 11/10/2017 - 6:32pm

I'm in my early 30s and haven't had the flu in over 20 years. I've had the flu vaccine twice during that period and both times I got sick, not flu but some cold like symptoms right after the shot.

So normally I wouldn't want the vaccine, but since I'm going to be around so many people with compromised immune systems, I'm thinking about it this year.

There's some reports of exaggerated immune response to the vaccine while on pd1 inhibitors, but no thorough studies that I've seen. Does anyone have experience with that?

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mrsaxde's picture
Replies 9
Last reply 10/22/2017 - 8:11am

Hello everyone. I wanted to give everybody an update on my status in the anti-LAG-3 trial.

Cycle 2 is finished for me, and I had my end of cycle scan on October 6. As before, the news wasn't terrible but it also wasn't clearly positive. My chest lymph nodes are slightly larger than they were in the scan I had at the end of cycle 1. There is another node in my chest that is measurable now under the RECIST criteria, and an enlarged node in my right armpit that Dr. Sharfman said had been there, but was now also large enough to be measurable.

Dr. Sharfman said that he would have liked to see things going in the right direction, but that the results were not enough to make him recommend that I come off the trial at this time. He said that some people have responded slowly to the anti-LAG-3 antibody, and given that the cancer is still confined to my lymph nodes he wanted to give it one more cycle.

So that's where things stand. Dr. Sharfman seemed visibly disappointed that I hadn't responded better, but he seemed to think there is still a chance that my response might ramp up. My next scan is in early December. At that point it looks like it may be decision time about other possible treatments.

-Bill

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Anonymous's picture
Anonymous
Replies 2
Last reply 10/19/2017 - 10:18am
Replies by: Anonymous, Janner

i've had this mole for a long time. It is smaller than 6mm in diameter and the only thing "off" about it is the variation in color. It is not raised what so ever. Should i be concerned and consult a derm?

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betsyl's picture
Replies 1
Last reply 10/20/2017 - 3:02am
Replies by: Jubes

Found this new video posted just a few days ago.

https://www.youtube.com/watch?v=CdnkSf_3CUI&feature=em-subs_digest

Good stuff.

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Found this new video posted just a few days ago.

https://www.youtube.com/watch?v=CdnkSf_3CUI&feature=em-subs_digest

Good stuff.

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Julie in SoCal's picture
Replies 22
Last reply 10/22/2017 - 4:17pm

Good Afternoon, Friends!

I have good news to share!  I am officially a NERD again!  That is I had scans last week and I have No Evidence of Recurring Disease!  How about them apples!?! 

So do the happy dance with me!

I am now 2/3rds of the way through the Lung Cancer Triathlon.  Surgery- check, Chemo- check!  The radiation phase is next and I think I start up this coming Friday.  I've never done radiation, so this will be a new experience for me.  I think I'm going to tell myself it's just like going on a ride at Disneyland!!

Mel seems to be in check, or at least I haven't found any new intransits.  So it's all good!

So looking forward to being done!  But, I'll stop complaining. it is working and for that I'm grateful!

Thank you friends!

Shalom!

Julie

Stage 3c  (TXN2cM0)-- 2008 WLE, SNB, LND, HD-INF, GM-CSF, (intransits) 2013 IPI, (intransits) 2014 PEMBRO, (intransits resected in 2017)

Stage 3a 2017 NSCLunc Cancer VATs; Carboplatin & Pemextred;  radiation

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Bekah274's picture
Replies 4
Last reply 10/18/2017 - 9:19am
Replies by: Anonymous, Bekah274, MelanomaMike, brendon

Hello, 

sorry to be a bother, may be a case of google has freaked me out. I have a mole on my chest, I’m a 27 year old female.  I’ve had it for as long as I can remember, in the past 2 years it’s started to develop black spots. I went to my doctor who looked at it and said the black spots were due to fake tan.  

However, I hardly put it on and it scrubs off... recently more black spots have appeared, it’s raised and not symmetrical, although it wans’t Symetrical 2 years ago and was only slightly raised.

is this something anyone has heard about before, I’m worried I go back and seem as though I’m panicking... sorry for the trouble.

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SDFun's picture
Replies 7
Last reply 10/18/2017 - 10:35am

Hi

 

I just got a voice my from teh billign depatment at the hospital my onoclogist is at that implies that insucne will not cover this testing and it may be $5000. I was wonderign what other people have learned? Did you have the testing and if so did your insuance cover all or a portion of it

 

Thank you

 

Nancy

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Dreaf01's picture
Replies 7
Last reply 10/20/2017 - 8:07pm

I just wanted to seek some advice from warriors on this board because I am kind of stuck and feel like I have no where to get advice from. Back in Dec. of 2016 I had a WLE and groin SLNB for Melanoma stage 1b 1.5mm not ulcerated, 4 mitosis, clark level IV. The margins came back clear and the SLNB was negative. Since the surgery I have had a small lump right near the SLNB scar. I have had 2 ultrasounds on the lump and both came back stating the lump is a normal appearing lymph node. How accurate is ultrasound? My surgeon stopped seeing me since I moved out of the area and I am now following up solely with the Dermatologist. I do have "pulled muscle" type pain in my groin area since this surgery, is this normal? I have to admit being a single mom to a 1 year old during this has caused me a lot of anxiety, but I feel like I cannot get anyone to take my concerns seriously. I have headaches and backaches and I feel like my concerns do not seem to be concerns of the PCP. I know with my stage I would not usually be referred to an Oncologist so I am wondering who I should discuss my concerns with. Thank you for any advise you can give !

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Jeff_in_FL's picture
Replies 5
Last reply 10/20/2017 - 8:04pm

Hi all,

Thought I would run this past you ...

May 8, 2017 I had an excision on my right calf ...Nodular variety. The VA surgeon did a pretty good job (flap method). Up until recently, I haven’t had any issues with it, but now there is a small pea size bump under the skin. Probably nothing at all, but I thought I would get some opinions while waiting for my VA appointment in early December. Wondering if this is a real common thing.

Thanks :)

Jeff

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Good morning - 

I had the tumor removed and a node biopsy done last week.  The tumor site came back clear but one of the three nodes showed a microscopic measurement - 1/20th of an inch.

I'm having a CT/PET scan done this week along with meeting with a medical and surgical oncologist.

Any advice as to what questions to ask the Dr I meet with?

I don't have an actual staging from the pathology but have been told I will most likely start immunothereapy and monitoring from there.

Donita 

Donita

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Anonymous's picture
Anonymous
Replies 5
Last reply 10/17/2017 - 8:42am

Just a question.  I was diagonosed with melanoma in situ in August and had surgery in september.  The initial bioposy had removed all melanoma.  I am switching health insurance companies.  On questionare it asks if you have cancer and treatment.  Do I mark yes or no?  I see a lot of different opinions regarding melanoma  in situ being cancer or not.  thanks.

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skylark's picture
Replies 10
Last reply 10/23/2017 - 12:37pm

Getting the melanoma diagnosis last month was surreal -- and really frightening.  Now I'm recovering from a Wide Excision (about 6 inches long) on my upper thigh and SLNB in the groin.  At three days out, the incision from the SLNB isn't bothering me too much, but the WLE incision is really swollen, especially at each end of the incision. It looks like two volcanoes!  Still uncomfortable to stand for even a short time.  Is this normal and if so, how long does it take for the swelling to go down?  I'm trying to stay off my feet as much as possible, but that's not helping with the worrying about what's next.  Any words of wisdom greatly appreciated.

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Anonymous's picture
Anonymous
Replies 7
Last reply 10/16/2017 - 1:45pm
Replies by: Janner, Benjamin, SDFun, Anonymous

https://ibb.co/mfK25m

I one day noticed this black/darkbrown spot on one of my moles. It is located on my trunk on the right side. The mole feels a little "puffy" and is about 6mm in diameter on the widest spot (being oval). I haven't seen any changes in it since i started tracking it (only 2 weeks ago). As for my other moles they all seem to be darkbrown or a bit lighter shade of brown with a darker brown center or spot so this one is not a complete "ugly duckling". The black/ darkbrown spot is darker than the darker spots on other moles though.

Wondering if i should keep tracking it on my own or see a doctor? And if the mole does not evolve is there any chance of it being dangerous?

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Nell's picture
Replies 4
Last reply 10/15/2017 - 10:21pm
Replies by: Nell, Anonymous, jennunicorn

I have had 27 infusions of Keytruda.  This week I have been miserable with what feels like a nasty Urinary Tract Infection. My regular doc has taken 2 samples, and the bacteria that should be making me feel like this are not there. Could I be developing a new side effect to Keytruda after all this time?  I know UTI is not a usual side effect, but there seems to be no reason for me to feel like this.  I wish you all well.  I pray this disease can be a treatable one for each of us.     Thank you, Nell

One voice can make a song; one life can change the world.

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