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 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:(

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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

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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? 

 

 

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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.

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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...

 

 

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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

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DennysGirl's picture
Replies 6
Last reply 6/8/2015 - 10:35pm
Replies by: DennysGirl, Jubes, DZnDef

Hubby is stage 4, brain, lung, liver and bones. He is coughing ALL the time. He hasn't slept more than 3 hours a day for the past 6 days. He's exhausted and it's so hard watching him dealing with this. Dr says his lungs are clear, no fluid. We have tried cough drops, warm tea with honey, straight honey, and a humidifier. He hasn't started treatment yet. Plans are to start Teflinar and Mekinist next week if all paperwork goes through. 

Any suggestions to help with the constant coughing would be greatly appreciated! His body can't fight if he's always exhausted from no sleep because of the cough!! 

Renee~loving wife fighting for her hubby! 

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jualonso's picture
Replies 2
Last reply 6/5/2015 - 8:05am
Replies by: jpg, Janner

Hi friends, after a rough time i would like ask for and advice. After 2 doses of keytruda brain metastasis was discovered. WBR was applied, i felt like crap. Now they offer to me fotomustina, i think quemo. Any experience with this.?????????

 

 

 

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Anonymous's picture
Anonymous
Replies 2
Last reply 6/4/2015 - 11:57pm
Replies by: Janner, Toby0987

Stage 3b amelanotic , mitosis 18. 2 yrs NED. Just got call from original derm that I hadn't been coming in for skin checks?! Really two years it took them to realize this but that isn't my question. I had growth on chest that was cracking open and bleeding, derm said it was just a nuisance spot and froze it. This is the same derm that said my melanoma was basal cell. Should I have let her freeze it or did I just make a big mistake

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las630's picture
Replies 8
Last reply 6/5/2015 - 10:36am
Replies by: las630, Patina, KMick, Anonymous, _Paul_

Good evening,

I am newly diagnosed with Malignant Melanoma.  I had a mole removed last month and it came back Malignant Melanoma (Breslow 1.2 with ulceration and 2-3 mitoses per mm2).  I met with a surgical oncologist 2 weeks ago, and I am scheduled for a WLE with SLN biopsy on June 19th.

I live in Fallbrook, CA and my dermatologist suggested I see the surgical oncologist at Loma Linda Medical Center in Loma Linda, CA (1 1/2 hours away).  I am willing to drive any distance to get the best treatment. 

Does anyone have any suggestions of great melanoma specialists in the southern California area or do you know if Loma Linda is highly recommended?  Temecula/Fallbrook/Murrieta/Vista/Escondido/Oceanside/Poway/San Diego??

I am insanely nervous, and the more I research, the more nervous I become.  I am a very upbeat and positive person and I am always super strong for other people, but deep down I am crazy worried and upset.  I always feel like laughter is the best medicine, and I always joke about everything, but internally I am really scared and I find myself crying when I am by myself and not keeping busy.  Does anyone else have the same feelings?  How have you been able to talk about your feelings??

I don't know, I guess I'm just rambling.  :)

thank you,
Lisa

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Replies by: kathycmc, Janner

I am undergoing a biopsy tomorrow, and the strong suspicion is nodular melanoma. It is a 4-4.5mm blood blister like lesion on my left buttock, and by the look of it there are few other things it could be (that being said, I pray for unlikely good news, but do not expect it). The doctor is doing an excision biopsy and that lead to some questions to my mind, as I reel with the potential news, and he seemed a little reluctant to answer many until the biopsy came in. He is also my GP, not a derm etc.

Is this disease *always* progressive? I mean, if someone was Stage IA or IIA, for instance, will they always progress to a different stage? It seems like from reading, so many start at Stage I or II and still end up Stage IV eventually. Are there people who have beaten NM on a permanent basis, or does it always come back? Is remained NED an unrealistic expectation even in a good prognosis?

I know more than a few people who have battled melanoma, but not nodular. They are all fine, at some level and have made some recovery. I have never met anyone with nodular, so I have no experience.

Finally, a question about luck. Does anyone ever come out of this clean? They biopsy it, they cut it out, and they get it all, no more issues? Or is the nature of nodular such that even at 1A you are going to battle it for the rest of your life?

Please forgive any resounding igronance or accidental insensitivity of these questions from a guy just trying to wade into a pool I think I will be thrown in in a few days. It is terrifying and numbing, and a world no one thinks they are going to be a part of until they are. Now I just want hope and the strength to do battle with this thing, and that begins, well, at the beginning.

Thanks for your patience.

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kezzercorn's picture
Replies 2
Last reply 6/8/2015 - 5:13pm

Hello, I'm new to this forum, I'm very glad to have found you.
I was diagnosed ten years ago with stage 2 melanoma and have just received the pathology report for a Spitzoid nevi ,polymorphic melanocyte nests have been found in the papillary epidermis. As there is so much controversy over histological diagnosis of Spitzoid nevi and Spitzoid melanoma I'm concerned about not being offered a wide excision, I'm over fifty which I gather raises the chance of an atypical spitzoid being malignant by 50%.I'm quite worried as my first melanoma wasn't taken seriously initially.
I'd really appreciate any advice.Thankyou.
Kerry

Kerry

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Hello,

I have been on the Tafinlar/Mekinist (Dabrafenib/Trametinib) combo for about 6 weeks now.  When I began I experienced some mild joint aches but they went away after only a week.  After that I felt great!

Well they have returned and the intensity has increased.  I wake up feeling achy all over my body and it doesn't go away unless I take 2 ibuprofen (400mg total).  I have to do this 2-3 times per day to keep it away.  I don't like taking this much ibuprofen. 

Has anyone else experienced this and do you have any suggestions for managing it?  Dose reduction?  Drug holiday, heat, etc??

Thanks
Mark

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las630's picture
Replies 10
Last reply 6/7/2015 - 12:58pm

Good afternoon,

I am due to have a wide local excision and sentinel lymph node biopsy done on 6/19.  I asked my surgical oncologist about recovery time, but he said it just depends on once he gets in there and how big the incision ends up being.

 

Can some of you lovely folks share with me how your recovery went?  And how long until you felt ok to go back to work?

 

Thank you and God Bless

Lisa

p.s.   the site is on my left inner leg by my knee where it bends, and the doctor said the lymph node biopsy will likely be the lymph nodes in my left groin.

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Hello all,

We received an inquiry from a reporter at a national publication working on an article about cancer drug costs. The reporter would like to speak with people who are having trouble paying for the cost of their medicines/drugs. If you are experiencing this challenge and would like to speak with the reporter to share your story, please email me at media@melanoma.org.

Thanks!
 

- Lauren, MRF

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