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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lovetheworld's picture
Replies 7
Last reply 6/19/2013 - 10:03pm
Replies by: POW, Pfitzge1, Anonymous, James from Sydney, lovetheworld

Hi everyone,

I'm a 20 year old male from Australia.

I have notice some new moles growing on my scrotum and the underside of my penis about a week ago and I'm concerned that it is scrotal melanoma.

The new mole on my scrotum is brown to black in colour, about 3-4mm, borderline is a bit irregular. I also notice some dark-coloured skin lesions scattered throughout my scrotum.

The mole on the underside of my penis is relatively small and black in colour, also has a irregular border.

I feel a weird itching sensation from the those two moles occasionally (i traced the feeling without look).

I showed my GP my new moles yesterday, he said I should get it checked and referred me to a dermatologist but I have to wait until the upcoming Monday.

I have a few questions:

1. Based on the symptoms, is scrotal melanoma possible?

2. If the melanoma is on my scrotum does it mean that it spreads quicker? (Since the skin on the scrotum is thinner.)

3. Can I get all my suspicious moles removed on Monday? Or do I need to wait for another surgical date? I really don't want to wait for the melanoma to spread before I remove it.

Thank you all for your precious time.

I am really worried, my mid-semester exams are near and I can hardly get into the mood for study.

I can't sleep at night without thinking and checking my moles.

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JerryfromFauq's picture
Replies 1
Last reply 8/31/2011 - 3:00pm
Replies by: Tracy Chicago

Some body likes MDA and dislikes Melanoma!  JackieW asked me to post this for her since she coouldn't get it to post for her.

http://www.mdanderson.org/publications/promise/issues/summer-2011/mulvas...

Jim Mulva is the CEO of ConocoPhillips. His wife, Miriam, is his support system and a powerful force in her own right. What’s most impressive, however, are the gracious demeanors and philanthropic hearts that guide their professional and personal lives.
       Their recent $5 million contribution to the Miriam and Jim Mulva Fund for Melanoma Research, for example, reflects their goal to help a team of doctors at MD Anderson make advances in melanoma in a way that provides tangible success and helps patients. The gift will support the research of Patrick Hwu, M.D., chair of the Department of Melanoma Medical Oncology; Elizabeth Grimm, M.D., Ph.D., professor, departments of Experimental Therapeutics and Melanoma Medical Oncology; and Jeff E. Lee, M.D., chair of the Department of Surgical Oncology and co-director of the Melanoma and Skin Cancer Research Program.
         “They’re working hard to map tumors through individualized therapy, to eradicate the tumors and save lives,” says Miriam. “We’re proud and pleased to be a part of that. We met the doctors, and they’re so committed to and excited about what they’re doing. It was contagious.”

ConocoPhillips has been involved with MD Anderson for many years, says Jim.
“We refer our employees and retirees from all around the world there because it’s the premier cancer institution in the world. I’m proud to be affiliated with, help and know MD Anderson.”

The Mulvas’ relationship with MD Anderson took on a more personal note four years ago, when their youngest son Jonathan was diagnosed with melanoma just three weeks before his wedding.

Jonathan’s diagnosis came as a complete surprise, says his mother.

“He had an annual physical exam including a visit to the dermatologist,” says Miriam. “He went to MD Anderson after finding a malignant mole on his forehead. They did such an incredible job, and we were so pleased with everyone from the administration to the doctors and surgeons.”

Jim Mulva has been on The University Cancer Foundation Board of Visitors since 2003 and has enjoyed seeing the fruits of his labor firsthand.

“It’s just a natural fit for us to want to support MD Anderson,” he says.  “It’s such an incredible institution, and while it’s very large, it’s still very personal. Everyone there is committed to what they’re doing. It’s inspiring to see.”

Giving back is one of the Mulvas’ top priorities. Both Jim and Miriam are involved in numerous charitable efforts supporting education, youths and medicine.
  “We’ve been blessed,” says Jim. “What we have is not necessarily ours, and it’s important what we do with it. The kind of commitment, clinical work and research going on at MD Anderson to extend and save lives takes financial resources. The more we all do this together in a national way, the more we’ll help MD Anderson with its mission of Making Cancer History®.”

Video at www.makingcancerhistorycampaign.com.

 
I'm me, not a statistic. Praying to not be one for years yet.

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JerryfromFauq's picture
Replies 10
Last reply 5/8/2014 - 12:08am

Has anyone tried this software program?  i'm interested in it for my wife.

 

http://www.wrc-inc.com/westsales/instructions.php?prodIndex=0

 

I'm me, not a statistic. Praying to not be one for years yet.

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Anonymous's picture
Anonymous
Replies 3
Last reply 8/27/2011 - 11:29am

I'm 3 yrs Ned from being diagnoses stage IIIa.
Just had an abnormal pap smear...is this something I tell my oncologist about?...or just wait 6 months til it's retested?

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Lisa13's picture
Replies 1
Last reply 8/26/2011 - 3:49pm
Replies by: emilypen

I've had a hiatal hernia and acid reflux for years. I just started Yervoy 2 weeks ago and both of these conditions have worsened. My acid reflux is so bad today that I'm dizzy, nauseus and have burning in my chest. 2 of these symptoms can be side effects of Yervoy, so I"m not sure which one it's related to.  That being said, does anyone whose been on or is currently being treated with Yervoy experience any of these symptoms? Especially if they had prior stomach issues.

Lisa - Stage 4 lung mets

Many impossible things have been accomplished for those who refuse to quit

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NYKaren's picture
Replies 7
Last reply 8/31/2011 - 3:45pm
Replies by: Richard_K, NYKaren, JerryfromFauq, Anonymous

Hi,

If anyone is a Sloan patient and did IL-2 at Yale New Haven, can you please tell me what the process is, i.e., once the decision was made, how long before you actually went to Yale for treatment?  Did it have to be pre-approved?  I have Empire BC-BS, who didn't need pre-approval for Ipi, because they considered it chemo, wondering about the process for IL-2. 

Even though Ipi killed some surface cells, the Mel is still there underneath and I'm sure I see a slow spread.  It's now abbuting my ear and eye and spreading upwards and downwards as well.

Wolchuk is back on Thursday & I'm seeing him @ 8:15 a.m., but I'm so wound up and nervous, I'm hoping someone on this board has been a sloan patient who went to Yale.

ALSO, I cannot get onto the link for Jane's list of what to bring for I-L 2.  Does anyone have the list?  You can post it here or email it to me at karenb613@aol.com

Thanks,

karen

Don't Stop Believing

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hoffmana1's picture
Replies 4
Last reply 8/26/2011 - 11:24am

My husband is a stage IV 13 year survivor.  His story is complicated, as he never received adjuvant therapy due to a second diagnosis of sarcoidosis of the lungs. Anyway, all has been well and though he is short of breath lately, I just noticed two very dark red/purple "blood blister" type spots on the underside of his scrotum. Is this something else, or could it be melanoma again? Has anyone else experienced getting mets so far out from the primary diagnosis? Is this even possible?

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I'm me, not a statistic. Praying to not be one for years yet.

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jax2007gxp's picture
Replies 8
Last reply 8/30/2011 - 8:31pm

Hello all,

I've read about patients and caregivers being trained in massage by a lymphedema specialist.  Tonight, I was watching a television program which featured a high-end spa where they perform a "lymphatic massage" technique.  The woman being interviewed explained the benefits of this sort of massage for folks with a weak immune system, but never mentioned people whose lymph nodes had been removed.  Does anyone have experience with this sort of massage? 

On a slightly side note, I'm considering a short getaway prior to my lymphedectomy.  Should I skip massage treatments?  Could massage spread the melanoma???

Looking forward to any thoughts on the subject.

Jacki

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carol b's picture
Replies 3
Last reply 8/30/2011 - 8:39pm

I had 3 tumors removed under my arm. Now they want to do radiation. Problem is i have had radiation before for breast cancer. Now they question is how serious will it be if thr radiation treatments overlap just a little. I was told it could cause lymphodema and tissue death,, Like a Chance of getting it.. The problem is they give me 2 options. A 5 day high dose radiation or a 20 dose low ratidiation. The 5 day treatment increases my chance of lymphodema and tissue death by 15% and the 20 treatments a 10% chance, now thats added to the 20% chance that i already have of getting lymphodema after surgery.. I have not had any lymphodema after surgery. So bacially i want to know do you think it will be ok to do the 5 day treatment and just take the chance of lymphodema and tissue death.. i have been so lucky so far with no problems. I just need a second opinion on here. I live 3 hours away from treatment. So the 5 day just makes more since to me. just need some answers about the treatment, and opinions as well... thanks in advance for answering...prayers to all on here who are going thru the same thing and even worse things, its a horrible disease.

Carolb

Stage 4

Believe all thing are possible, believe faith can move mountains, believe in the healing power of prayer and never ever give up on your dreams

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kris herrington's picture
Replies 15
Last reply 8/27/2011 - 11:31pm

Hi,

 

I am stage 4 and was told to go to the NCI for thier treatment with Steven Rosenberg. Has anyone been thru this? What was it like and did you have sucess?

 

Thanks!

Kris

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JerryfromFauq's picture
Replies 3
Last reply 8/25/2011 - 9:26am
Replies by: Terra, nickmac56, MariaH
I'm me, not a statistic. Praying to not be one for years yet.

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heg50heg's picture
Replies 2
Last reply 8/25/2011 - 5:10pm
Replies by: AlanM, JerryfromFauq

After 2 and one half months of interferon I had to stop treatments due to getting pancreatitus . Would interferon cause this. My doctor does not want me to start it back up after getting so sick. Will that amount of interferon do me any good or will I be more acceptible to advancing to stage 4 melanoma since i did not complete it.

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glewis923's picture
Replies 9
Last reply 8/26/2011 - 8:02am

After i completed 7 SRS (Novalis TS) and WBR  4 mths. ago, then Yervoy i finished in mid-May;  I'M ALIVE !    still no telling which brain tumors are completely dead or what, but no "meaningful" new ones.  My speech sounds like Donald Duck - Drs. don't really know why except possible brain stem pressure or something.......BUT....my lung tumors have all shrunk a tad and definately seem to be stable- as brain too.

Next week I start the Roche Vermufumib (now whatever it's called-raf)  still PLX 4032.  I cannot praise my local small-town oncologist enough for helping me weed through things- ie.:  the "big" know-it-all hospitals/ Drs. who know /control all but tell you very little at times, but  control your destiny!   

Anyway, Very HOPEFUL and grateful that I've been given a 3rd or 4th chance (lost count).   Wishing ALL of you the best.

Love from Grady Lewis Family.

I'm Here for Now, I've got the rest of my life to die; and if so, old age could be overated and God does exist.

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jax2007gxp's picture
Replies 15
Last reply 9/5/2011 - 10:20pm
Replies by: jax2007gxp, JerryfromFauq, Anonymous, mcanova, lhaley, flynn, awg

Hello all,

I saw the surgeon today.  Assuming the insurance company approves the PET (I was told that insurance companies are making this difficult lately) and it is clear, the surgery is scheduled for 9/9.  He is planning to remove the superficial nodes from my right groin and will only take the deep ones if it makes sense to do so.  I know the more missing nodes means greater risk of lymphedema.  This really isn't what I'm wondering about though.  He said that he would remove a vein from the area and then detach/reattach a muscle in order to protect the area where the nodes were removed.  Has anyone experienced this movement of the muscle or removal of a vein?  I had not read about it anywhere and I'm wondering what to expect afterward.

As always...thank you so much for any feedback you may have for me.

Jacki

 

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