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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BrianP's picture
Replies 3
Last reply 9/1/2017 - 12:56pm

Study on over 8,000 patients with .5 to 1.0 mm cutaneous melanomas on the results of their SLNB.  I found it interesting that the younger patients had a few percentage points greater likelihood of having a positive lymph node than the older patients.  Opposite of what I would expect.

http://www.practiceupdate.com/journalscan/38873/3/4?elsca1=emc_enews_top...

Says "Patients with a tumor less than .76mm without ulceration or mitoses had an overall low rate of nodal positivity regardless of age."

 

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malui's picture
Replies 5
Last reply 9/1/2017 - 10:36am

In the middle of July I found a swollen lymph node in my groin area.  Making sure it was nothing, I went to the doctor the next day to get it checked out.  2 ultrasounds, 1 biopsy and 1 month later, turns out there were malicious cells in the lymph node pointing towards melanoma.  The doctor then checked my entire body and found nothing that points to a primary tumor.  Her best guess was a pinpoint sized dot under my toe nail.  It has been about 2 days and I am currently waiting to see a specialist. 

In a nutshell I’m scared.  I am in my early 30s, with a wife and 2 young kids who are the joys of my life.  I have told my wife a thousand times that I cannot wait to watch them grow up and get married and get to meet my grandkids.  I am trying to stay positive but there are so many thoughts and emotions running through my head.  Right now, it seems like waiting is the hardest part.

I don’t know what I’m really looking for by posting here.  I guess really just positive thoughts and advice on how to get through the unknown parts.

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Anonymous's picture
Anonymous
Replies 11
Last reply 9/1/2017 - 9:43am

I've had this dark mole on my shoulder for about 7 years. Last year the derm diagnosed it as sebhorrheic keratosis. Since then, it looks a little different, developed a dark red border and made me nervous. It's small. About 3 mm, on my shoulder and dark, almost black. It's a tiny bit raised. A new dermatologist today said it looked concerning and removed it. I asked her if she thought it was melanoma but she did not give me answer. I'm very worried to the point I can't eat, sleep, work. How would I know if it's nodular? It never grew in size for the past 7 years, just developed this reddish border. I have horrible anxiety. I don't know what to do.

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Xanthe12's picture
Replies 3
Last reply 9/1/2017 - 12:51am
Replies by: Patrisa, Anonymous, Nemesis

hi I have within the last few weeks told I have skin cancer, so far on my arm and leg. The melanoma on my arm was 3.7mm Breslow superficial spreading with 4 mitoses and ulceration. In a few weeks I am getting further skin removed around the area and a lymph node biopsy. Also i am BRAF wild type - what does this mean?

Is this bad? What is the likely outcome?

I hope to hear from you soon

Linda

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Carole K's picture
Replies 10
Last reply 8/31/2017 - 9:42pm
Replies by: dibo, Nicky, dodgedh2, Carole K, Rocco, DebbieH, SOLE, Anonymous

Hi Everyone,

Someone posted below asking if there are any long term survivors. Yes, there are several long term survivors .  I will post on my fb page and on the fb Melanoma pages asking them to come here to check in.  One is Kathie K, David from Wi, Debbie H, and there are more.  I will do my best to get them here.  They are all awesome people.  I saw Fen replied to your post as well as Janne.  Both are a huge source of information.  Hang in there..  

Love and Light

Carole K

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Dhva's picture
Replies 1
Last reply 8/31/2017 - 7:16pm
Replies by: J.bun

New lump (4x3x4 cm) found on 8/5. (Dark freckle noted in surgical site of primary 7/15).Positive PET scan 8/15. Appointment with surgical oncologist 8/24.  No communication from oncologist and results from tests found on the patient portal. Waiting to find out a surgical date. How long does it typically take to set up surgery in a case of probable recurrence?

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dabernethy's picture
Replies 2
Last reply 8/31/2017 - 10:23am
Replies by: Ed Williams, Bubbles

In May I was diagnosed with Level 4 Melanoma on my back and a precancerous spot. As soon as I was diagnosed, I had a mammogram and pap test. I had both spots removed in June, along with biopsies of lymph nodes. I also had an MRI and PET Scan. Those came back as Stage 3A Cancer, angiolymphatic, but it did not spread to any organs. I went in on August 15th to have those lymph nodes removed from my neck and under my arm.

A week after surgery I went in to have a drain removed. I was told my pathology report was not available. I go in on Sept 5th to have bloodwork, the last drain removed and to discuss immunotherapy. Interferon and Yervoy are the two suggested. Wait and see is not suggested. Then I got a call that they decided to do another mammogram. Not sure if I should be concerned. Well, of course I am concerned. 

I'm reading mixed signals on both of the treatments though. I did check with my insurance, and both are approved. I would love to hear from others who have gone through this and have suggestions. Or suggested questions to ask my doctors. Thanks to these forums, I've learned that I need to start a probiotic, and I am asking that question as well so I know it's in my chart. 

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Anonymous's picture
Anonymous
Replies 8
Last reply 8/31/2017 - 10:07am
Replies by: cancersnewnormal, jrtufo, Anonymous, Bubbles

Hello, my mother was diagnosed with Malignant Melanoma in 2014. She had undergone surgery wide excision and reconstruction on left lower part of abdomen and hip region. In 2016, she had left inguinal LN recurrence and  went through Left ileo inguinal block dissection. Currently, she is detected with BRAF v600 mutation. PET scan shows metastatic liver, spleen and bone lesion.

The doctors are suggesting either to go with Zelboraf or Chemo therapy. Can you please suggest, will Chemo be useful in case of Malignant Melanoma?

If we go with Zelboraf 960mg, 4 tablets in every 12 hours, will this help? I wanted to check, how effective Zelboraf is, and will it help curing Malignant Melanoma? This medicine is not readily available in our country and if it is, the suppliers are sellig at a very high rate.

Can you please help me decide if I should go with Chemo therapy or Zelboraf? 

Your quick respose is highly appreciated.

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ashlee12's picture
Replies 17
Last reply 8/30/2017 - 4:45pm

So I have questions about melanoma that I'm not to sure about . How does it spread and how does it get into lymph nodes? Is it a by blood thing?? 

 

Also so I read its a fast spreading cancer... Does that mean it can spread in a week a year ?? 

i currently have stage 0 so I wanna know what can happen

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GAngel's picture
Replies 12
Last reply 8/30/2017 - 4:16pm

Dear Karen,

It's been weighing heavy on my heart that you may not have seen my reply back to you on a previous post of yours wherein you stated that Tafinlar is dabrafenib and mekinist combined.  I want to make sure that you know that you have the wrong information as Taflinar is NOT the two combined.  Please read my reply to you regarding this subject which I pasted below.  I just wanted you to realize that you are not presently taking the combo if you are only taking Tafinlar and you should contact your oncologist for further clarification and so that you can start taking the Mekinist (trametinib) with the Tafinlar (dabrafenib), if that was your intention.

"Tafinlar is not dabrafenib and mekinist combined. These are absolutely two separate drugs. Dabrafenib is the scientific/generic name for the drug being sold by GlaxoSmithKline under the trademark name of Tafinlar and Trametinib is the scientific/generic name being sold under the trademark name of Mekinist. These drugs can only be dispensed through a specialty pharmacy and will come separately and the Mekinist(Trametinib) is delivered in a cold package and MUST always be refrigerated. Although I have heard of at least one person who was unable to get their insurance to pay for the combo because of the lack of FDA approval our insurance covered both drugs and so have many other insurances, apparently.  At least give it a try as your doctor is not prohibited from prescribing both drugs.  I may be wrong, however, I believe that obtaining FDA approval of the combo will help prevent any insurance coverage issues." 

Wishing you all the best!

Love and blessing to you and yours!

Gina 

"Don't worry about anything; instead, pray about everything. Tell God what you need, and thank Him for all He has done."- Philippians 4:6

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Jewel's picture
Replies 2
Last reply 8/30/2017 - 12:40pm

Hi there,

My husband just got the latest results from his scans. The good news is the Oncologist told us that my husband is stable, no melanoma. He precedes to tell us a 1-1/2 in mass has showed up on my husband bladder which for some reason he thinks has very little chance of being melanoma. My husband also has an enlarged prostate. An appointment is being made with an eurologis asap. Not sure what to think of these results but if it isn't melanoma then that would put us at 2-1/2 yrs NED with Yervoy. Trying to remain positive. Thanks for listening.

Jewel

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Anonymous's picture
Anonymous
Replies 2
Last reply 8/30/2017 - 11:04am

Just wondering if anyone else has experienced headaches while on this combo?

Thanks.

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Happy_girl's picture
Replies 27
Last reply 8/30/2017 - 7:50am

I know this topic has been brought up before.  I have tried to do a lot of research about it on my own. Is there a true correlation between pregnancy and melanoma.  I was diagnosed 6 weeks After giving birth to our first baby.  She will turn 1 in a month. ( hard to believe! :). We are not ready to have another one yet, but I have just been thinking about if it's a reality or not to even think of having another baby.  I went to mskcc for a 3rd opinion.  The dr I saw there, when having more children was brought. Up, said wait about 3 years.  My oncologist at the james center (Ohio state) said wait a year.  I'm just curious what your thoughts and opinions are.  I want to have another one, but also don't want to leave my daughter and husband.  I'm not sure what to think. Help! 

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While having a biopsy on my butt today (laughs allowed), my derm asked me if I used a roll-on or a stick deodorant.  He said a study out of Europe indicated using a stick deodorant allowed you to feel enlarged but not painful nodes easier than you might otherwise do.  So if you're not that picky on the type of deodorant you use, and your melanoma location might drain to your axilary nodes, a stick brand might be a simple self-check tool.

http://www.MelanomaResources.info

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Jdc's picture
Replies 6
Last reply 8/29/2017 - 11:22pm
Replies by: Jdc, BrianP

Hi all, I finally got in to  melanoma specialist for my second opinion. unnfortunatley it was after i started 1 round of ipi, the specialist advised me that a pdl1 test should have been done as was not. He sent for the test and it was positive pdl-1 and also braf positive. he advised that i not resume ipi and start on keytruda along with radiation on another spot on lung that grew from 6 to over 9mm in 3 months. I had some pituitary swelling about 4-5 weeks after ipi infusion causing severe headaches and some vision changes.Wondering if anyone knows if keytruda will effect this also? i see the doc this friday ill update more then. Thank You all!!

Joe

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