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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AnnaBanana30's picture
Replies 10
Last reply 6/4/2015 - 1:57pm
Replies by: CWeclaw, Anonymous, AllyNTAus, AngelaM, teri0915, natasha, bdhf

Has anyone developed melanoma while pregnant or shortly after?

I just think it's intresting that two moles on my body changed while I was pregnant with my son and turns out they were both melanoma in situ. I just wonder if there's a link since your body chemistry changes so much while your pregnant.

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Anonymous's picture
Anonymous
Replies 3
Last reply 6/4/2015 - 10:34am
Replies by: jessnflip, Anonymous, Andrew1725

I was recently diagnosed with melanoma.  They did a 1cm and think I am going to be fine.  It was found during my routine check.  After something like that you start to pay attention to everything.  I have a small mole like mark (slightly raised) that has been there for a few years.  Hasn't changed in color or shape or size (purplish). The dermatologist has seen it several times and told me I could keep it.  Don't want to be paranoid...want to take his advice.  Have to assume he knows what he is looking at.  Plus all that I read...you are looking for change.  True?

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Anonymous's picture
Anonymous
Replies 12
Last reply 6/3/2015 - 10:58pm
Replies by: Anonymous, yunielth, Hollywood, Janner

Hi everyone.  I am a 30 year old male and I was recently diagnosed with stage 1b melanoma/ mitotic scale 2/ Clarke level 2/ no ulceration.  They did not do a SNLB because the mole was located in the upper center part of my back.  Anyways,  I feel like I want to do a SNLB but I don't know if it's possible since I am a month out of wide local excision.   Anyways, can they reopen me up and check the lymph nodes?  I would appreciate if anyone with a similar situation can put in their input.  Thanks- Mark

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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 6
Last reply 6/3/2015 - 4:40pm

Good morning,

I had a mole removed from my leg about a week and 1/2 ago.  The dermatologist called me last week and said that it came back as malignant melanoma and that I needed to see a surgical oncologist.  I saw the surgical oncologist on Thursday and they said I need to have a wide excision and a SLN biopsy.  However, my surgery date is not until June 19th.  The waiting is kind of making me crazy!  :(

 

My path reports from the shave biopsy showed malignant melanoma, 1.2mm breslow thickness, positive ulceration, 2-3 mitoses per mm2.  Can anyone tell me the statistics of someone who ended up having lymph node involvement with this type of path report??

 

Thank you,

Lisa

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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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Anonymous's picture
Anonymous
Replies 8
Last reply 6/3/2015 - 6:47am
Replies by: Anonymous, amelanomajourney, Janner, arthurjedi007

Hello everyone.
First of all forgive me for my bad English (its not my mother  but Spanish)
Since the diagnosis of my sister (Superficial spreading melanoma, stage 1A melanoma Breslow depth 0.6 mm, clark III) last year, there is no day in which I dont wake up or dream about it, the scared of a possible recurrence in the next months or years terrifies me.
I have been searching at the internet the odds of a possible recurrence. I have read many people with stage 1 become stage 3 or 4, according to statistics is very low probability, the vast majority are "cure", but always read these things happens, which is my greatest fear.
I suffer in the flesh every time I read some reviews of this kind, I know how hard it is or how bad it could be.
I have read many stage 2 or 3 dont receive any treatment, the interferon is contraindicated. I do not understand why is not possible to not use immunotherapy as used with patients of stage 4, there are evidences of effectiveness in most patients.
No reason why my sister had melanoma, no one in my family that I know has been diagnosed, she now lives in Germany, but we are from Cuba. My theory is that being in Cuba his body was adapted to the sun and produced the vitamin D3 that her body needs and when she moved to Alemnia where almost no sun did not produce this vitamin, and possible her immune system defenses go down and then appeared of the melanoma. Is it possible?
Another question, Is recommended to take vitamin d3, always use sunscreen and take other supplements such as green tea, CoQ10, IP6 Inositol, Omega3 etc?
Thank you very much to all and a lot of strength and encouragement for all.
Yuni

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Anonymous's picture
Anonymous
Replies 3
Last reply 6/2/2015 - 10:36pm
Replies by: Janner, Anonymous

I recently went for my routine skin check and the dermatologist took a shave biopsy as he didn't feel it was anything serious. The report came back superficial spreading malignant melanoma from a respected pathologist...the report said the recommended treatment was a 1cm we and careful flow up (visits every 3 months for 2 years..then every 6 for 3)...when I asked the stage..said as low as you could go above 0..and when I asked about lymph nodes...was told early enough not to worry. Does this sound right?...I have a follow up this week and am going to ask for a copy of my pathology report. I assume that if it were a stage 2 or higher...I would have been given my options...got the call on a Thursday and had the incision on Friday...I asked them why so soon..and they said even though it was caught early..want to remove melanoma as soon as possible...obviously..I agree with that...but then your min thinks that it was spreading fast...you here people waiting... my dermatologist is very reputable and he knew I was upset waiting for the report..so I assume he had my best interest at heart.

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yazziemac's picture
Replies 14
Last reply 6/2/2015 - 7:11pm

Just wanted to let you know that my sweet Pete passed on to the next life on Friday night, at home, in the arms of his family.

 

Yasmin

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DennysGirl's picture
Replies 12
Last reply 6/2/2015 - 7:04pm

My husband had melanoma removed 12 years ago from forehead. he is now 47 and It"s back, Stage 4. HIs largest is in his right lung and is inoperable becuase it"s too close to his heart.  Also small leision on brain, neck, spine, ribs, pelvic and knee bones. small tumor in liver. He was diagnosed 4 weeks ago and are still waiting for results back from Mayo on BRAF. We hope to hear a plan of treatment on Thursday. 

We have been reading on Yervoy and also on Keytruda. It is all very scary. If you have any advice on what types of questions to ask or treatments to ask about, it would be apreciated!  The dr has advised us to start the process of long term diasability....Any thoughts? Right now we are using our local hospital that has a Cancer center. The Dr says he can send us to Northwestern in Chicago if we would like but he says that he doesn't feel that they would give us any better options or treatments.....Any thought?

Thank you again! It has been very inforative reading posts on here and encouraging too! 

Renee~loving wife fighting for her hubby! 

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Anonymous's picture
Anonymous
Replies 6
Last reply 6/2/2015 - 6:39pm
Replies by: kylez, Anonymous

Can anyone clarify this for me?

If someone has the NRAS mutation, is that considered wild-type?

Thank you.

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I have a likely case of Nodular Melanoma presenting at this point as a 3.5mm diameter bloodblister like lesion on an old mole. I am getting it biopsied tomorrow (June 3) and will not know for sure that it is, though the Doctor seems to suspect it greatly. Otherwise I am without symptoms. 

The problem is, my wife and I have a once in a lifetime, pretty much non refundable trip to Europe starting Friday, June 5-June 22. Are those 18 days going to literally mean the difference between life and death for me, if I do not deal with this until I get back? 

I am worried (actually scared out of my mind is a better way to put it) as can be, obviously, but do not want to break my wife's heart either by cancelling the trip or destroying my potential prognosis and killing myself. I am in a tough place.

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georgiegirl's picture
Replies 1
Last reply 6/2/2015 - 9:50am
Replies by: Janner

I noticed a new freckle on my neck, I honestly can't remember how long ago, a couple of months, a bit longer?

It's now about 2.5-3mm in diameter, round, clear borders, raised and firm to touch. Colour-wise it's very dark brown, with a slightly blue black appearance under bright light. It's definitely grown noticeably in a fairly short time.

I've spent hours googling pictures and have convinced myself it's a nodular melanoma because it looks just like the pictures I've seen. It's raised but it feels as if it's a little deeper under the skin too.

It's about halfway between my jawline and collarbone, 4 cm from the midline. I have a palpable cervical LN about 1cm and firm on the same side. But I often have these ones come up.

Trying to get an appointment with a dermatologist today.

I'm terrified, can anyone give me any advice? It's not very big in diameter but that doesn't help if it's a nodule melanoma, right?

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