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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TinaW's picture
Replies 1
Last reply 9/3/2017 - 7:32am
Replies by: youngann

I'm not sure what that means, but my oncologist is sending me to an ENT dr to find out what is going on. It feels like I have a pill stuck in my throat, it's not painful, but is very uncomfortable if my throat gets dry. Does this sound familiar to anyone? I heard that interferon may have caused some issues, I was on it for a year.

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jrtufo's picture
Replies 9
Last reply 9/3/2017 - 5:01am
Replies by: jrtufo, J.bun, Anonymous

Hi caring friends

I've been off of the vem/cobi combo for a week and I can't get the itching under control.  The severity of my rash is subsiding but no ammount of steriod cream, atavax, or zyrtec seems to help.  Oatmeal baths provide in-the-mommen relief, Arinca is good for about 30 minutes, but I can't sleep, can't sit still, pretty much going nutty with the itching.  Help!

Julie T

JulieT

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I'm not sure what that means, but my oncologist is sending me to an ENT dr to find out what is going on. It feels like I have a pill stuck in my throat, it's not painful, but is very uncomfortable if my throat gets dry. Does this sound familiar to anyone? I heard that interferon may have caused some issues, I was on it for a year.

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I'm not sure what that means, but my oncologist is sending me to an ENT dr to find out what is going on. It feels like I have a pill stuck in my throat, it's not painful, but is very uncomfortable if my throat gets dry. Does this sound familiar to anyone? I heard that interferon may have caused some issues, I was on it for a year.

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jbronicki's picture
Replies 9
Last reply 9/2/2017 - 9:45pm

Hi all,

Sorry, haven't been on in a while after Josh passed away, just too sad.  But we just came through Harvey here in Houston and rain has stopped.  We live just south of the Med Center where MD Anderson is located. I know MD Anderson had to evacuate and not sure if there are any patients from the board that need place to stay or help of any kind.  The roads should clear soon and my husband and I can help with anything that's needed, transportation, food, extra room, coordination help etc.  Not sure if anyone from the board are currently getting treatment here, but if you need anything, please feel free to email me at jbronicki@gmail.com or jbronicki@uh.edu.  

Hugs

Jackie

 

Jackie <3

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Coconnor16's picture
Replies 1
Last reply 9/2/2017 - 4:56pm
Replies by: Jubes

I have become adrenal insuffient from my treatments of Yervoy and use of prednisone during my treatment . I am  5 of 8 maintanence doses of Yervoy and the Yervoy has been reduced to 3 kg but I still have low cortisol and I want to get off prednisone. My endocrinologist just increased my daily dose of prednisone to 5mg to try to wake up my adrenal system. Has anyone experienced this as well ?

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Kate_b's picture
Replies 6
Last reply 9/2/2017 - 1:57pm

Hello all,

 

I appreciate this forum and the wisdom collected through your individual experiences. Thank you in advance!

 

I had a very fortunate diagnosis of stage 1 superficial spreading melanoma with a depth of 0.77, no ulceration, no lymphovasculer involvement, no neurotropism, no satellite lesions and all margins were cleared from the excision. I am thankful for what came back from pathology and so was the medical staff that broke it all down for me. However, they now want me to do a wider excision now. Why would this be necessary?  I err on the conservative side when it comes to medical interventions and don't want to be cut if I don't have to be. Does this sound like they want to cover their legal behinds so they're being overly aggressive? I'm open to all opinions.

 

I do hope this doesn't read as whining when so many of you are bravely enduring serious long term treatments. Thank you for being on this forum.

 

kate

 

 

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Anonymous's picture
Anonymous
Replies 3
Last reply 9/2/2017 - 1:22pm
Replies by: Anonymous, Ridingaroundwith27Jennifers, J.bun

So my brother noticed a new lump distal to the primary at beginning of month. Oncologist ordered CT/MRI/PET and results were all indicative of metastatic disease, damn it.  After meeting with his surgeon they decided it needed to come out asap. That's been over a week now, still no word from the oncologist or surgeon regarding a tentative date for surgery. I personally would be calling every day asking for updates, but I'm impatient. My brother is much more laid back even though I know the waiting is brutal for him. Just wondering if anyone here has a general idea of what "asap" means in this new crappy world of cancer?

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Linny's picture
Replies 4
Last reply 9/2/2017 - 10:37am

Sometimes this board gets a bit scary so I thought I'd follow suit with what another poster did a short while ago and offer hope to those of you who are newly diagnosed.

When I was diagnosed near the end of 2010 with an unknown primary, I was a complete basket case. Saw Dr. Sharfmann at Johns Hopkins on August 30 and am still NED. Life has been good so far. Am grateful to have a facility like Hopkins close to where we live. 

If you're newly diagnosed and scared to death, there is hope. When I was diagnosed there weren't many offerings at all in terms of treatment, even for those who were at Stage IV. This has dramaticlly changed and continues to change for the better.  I do feel we are on the cusp of controlling, if not even curing, melanoma.

 

Stage III, Unknown Primary; 1 positive node in left axilla

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mjanssentx's picture
Replies 5
Last reply 9/2/2017 - 10:18am

...I never know if I should post good news at this point but you know what, good news is good news.  For newcomers, I was diagnosed as a 3A patient 2.75 years ago.  I was one of the last patients to get Interferon.  At the time, it was the only approved treatment for Stage 3 patients...but I survived it after a pretty miserable 2015.

Anyway, after 2 years of quarterly PET scans and annual brain MRIs I continue to show no signs of reoccurrence (NED if you will)....got my last scans 2 weeks ago and did the happy dance.  My underarm still hurts where they did the full nodal removal but I can live with that.  More importantly my confidence and attitude toward life in general has improved dramatically.  My son got married a few months back...and my wife look forward to planning an extended life together after 32 years of marriage.

Just wanted to post to encourage others that have been diagnosed recently and are scared to death like we were.  I used to cry myself to sleep for almost 2-3 months after being diagnosed, lost 25 pounds, and clouds were out everyday.  Looking forward to Yellowstone next month...

Stay strong.

Michel

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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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