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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I was just wondering if my sister is getting the most out of her oncologist and if her scans for her stage are normal. Sara has stage 3b diagnosed Sept 09 and did the 1 year of interferon which she finished this past Feb. She was having routine 3 month scans which included MRI's and CT's however she only had 1 PET scan right after diagnosis as well as only 1 brain MRI.  At her last visit when she finished her interferon the oncologist told her he would be moving the scans to every 6 months. He told us that repeated use of the scans every 3 months could pose long term risks. My sisters primary was 3mm and ulcerated and had a mitosis of 15/mm and she had microscopic involvement in the sentnial lymph node. We just want to make sure that we are being proactive and as aggressive as we can be. 

1. My first question, is it standard to not give a PET scan for routine scans and use it just for a baseline? And rather have MRI's and CT's?

2. Is it standard to move scans to every 6 months when she hasn't even been NED for 2 years yet?

We are looking into switching oncologist and going to University of Wisconsin Madison Comprehensive Cancer Center, but would like to know if this would be the same course of action that most dr's take for stage 3... any insight would be greatly appreciated!!

Thanks so much,
Jessica (Twin sister diagnosed with stage 3b) 

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Carmon in NM's picture
Replies 1
Last reply 5/6/2011 - 11:07pm
Replies by: lhaley
Yesterday my husband and I met with our new radiation oncologist and we both really liked him. Dr Schroeder is young, energetic, interactive and very up to date with his knowledge of current research and treatments for melanoma. Best of all, he was on the same page as we are regarding prophylactic whole brain radiation (WBR) and radiation therapy.
 
Like us, his feeling was that WBR should be held back as a last resort treatment for me if I should have recurrance in my brain that cannot be managed with gamma knife surgery. He talked about with the size of the tumor that bled last year, I most certainly had other melanoma cells in my brain. The fact that I have had no recurrance in nearly a year is an excellent sign and to him means that most likely my body has handled them on its own.
 
On using radiation therapy on the adrenal tumor site as a prophylactic treatment, I was on the fence on it and would have agreed had he thought it was a good idea. But he didn't. He said with no active disease there or anywhere else, there was nothing for him to focus on and since the adrenal gland is located in the middle of a lot of organs including the bowel and spine, it would be too easy to also damage organs that either couldn't be repaired, or repaired with great difficulty and all of it life threatening.
 
So the decision we all agreed on is that I should enjoy the summer with a break from any treatment! And he will continue to follow my case with consultations after each of my three month scans. I feel very good about that as I was impressed with his level of knowledge on melanoma and that he isn't a doctor who wants to jump into treatments just to be doing something.
 
So there you have it! My next scans will be on July 11th and we all hope that closing notation of 'No evidence of metastatic disease.' continues to show up on these scan reports too.
 
Carmon in NM - Stage IIIb 9/2008, Stage IV 6/2010 with brain and adrenal mets. NED since 4/13/2011 after craniotomy, gamma knife surgery and clinical drug trial with carboplatin, paclitaxel and temodar.
Carmon in NM: Stage IIIB 9/2008; Stage IV 6/2010 with brain and adrenal mets; NED since 4/13/2011. It’s not what happens to you, but how you react to it that matters. ~ Epictetus

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How long have you had mel, and what stage are you at now?

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TracyLee's picture
Replies 1
Last reply 5/6/2011 - 10:45am
Replies by: KatyWI

Today is my radiation consult for "the plan".

What should I be asking? I am getting two second opinions before beginning radiation.

My melanoma is scalp centered, with neck involvement.

Thanks

Never will I leave you, never will I forsake you. Hebrews 13:5 Cast all your anxiety on Him, because He cares. 1 Peter 5:7 Stage IV 5/16/11 Ipi - 4 rounds May - July 2011 BRAF expanded access trial 8/8/11

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teach's picture
Replies 2
Last reply 5/6/2011 - 10:57am
Replies by: dian in spokane, nicoli

I had an early melanoma removed in October  2007.  Recently, for the last month or so, the scar has become terribly itchy.  It is on my back, and I can't see it, so I had my husband take a look.  He can't see anything unusual, and he didn't feel any bumps.  I am somewhat concerned, since it has been so long since my surgery.  I just wondered if anyone here had had a recurrence with a symptom like this.   I am watching it, but don't want to be paranoid.  

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Hello everyone. I was diagnosed with Melanoma in-situ last June. I had my wide local excision on my calf and everything has been fine since.

I just had my checkup and had two moles biopsied. One came back as squamous cell carcinoma which they say they will freeze the remaining borders.

The other came back as an atypical/precancerous mole (that was the words the nurse used). She said I will need to have an exicision for the atypical mole. I was kind of stunned at the time so I didn't really question it but the more I look into things this seems to be a very agressive treatment, even with my history of melanoma.

I left a message for the derm to call my back. The lesion in on the back of my shoulder- kind of where my bra strap sits. I also have concern about there being enough skin for an excision. I am pretty thin and it sits right on top of a bone.

Anyway, I am curious to see what everyone thinks of this treatment plan. I can't find much information at all about WLE's for atypical moles.

Thank you in advance.

Amanda

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Anonymous's picture
Replies 1
Last reply 5/11/2011 - 4:43pm
Replies by: Linny

We just moved to Margate City New Jersey and need a great dermatologist for my husband.  We are willing to travel if necessary .  Any suggestions would be most helpful. 

 

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We just moved to Margate City New Jersey and need a great dermatologist for my husband.  We are willing to travel if necessary .  Any suggestions would be most helpful. 

 

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We just moved to Margate City New Jersey and need a great dermatologist for my husband.  We are willing to travel if necessary .  Any suggestions would be most helpful. 

 

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How do you treat low platelets? Steroids are not good for melanoma. Anyone had a long term treatmetn for platelets?

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Lisa13's picture
Replies 13
Last reply 5/6/2011 - 3:57pm

I just got a call from my oncologist regarding my CT scan. They found some very small nodules in my lungs (up to 20) and my oncologist wants to have me do another CT in a month to see if they've grown in size.  He also wants his radiologist double check the scans as well as not all nodules are cancerous.  Unfortunately, this means I won't be able to participate in the ipi trial in Montreal.

Has anyone had nodules turn up that arn't cancer?  I'm really trying to hold it together until I have something to worry about, but this is incredibly hard.

Lisa

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

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Jamietk's picture
Replies 9
Last reply 6/7/2011 - 11:29am
Replies by: Anonymous, bcl, nicoli, marster37, KatyWI

My friend and coworker was diagnosed with breast cancer last year. She also has a history of basal cell carcinoma and is fair skinned, has light hair, and lots of freckles. On Monday (Melanoma Monday). She got an email from Celsius Tannery explaining the benefits of vitamin D in regards to preventing or preventing a recurrence of breast cancer. They were recommending tanning to help prevent breast cancer recurrence. And, get this, during the month of May, any donations made to them are going straight to their breast cancer research to learn more about the correlation with vitamind D. Of course you have to go in person to make a donation. I agree vitamin D is important. My Surgical Onc at MDA has me on it. But I get it from a pill, not a tanning booth. I am disgusted that they are promoting the use of tanning beds to prevent breast cancer. And get this, her dermatologist is doing the same thing. Her derm told her because she has had breast cancer, it would be in her best interest to tan for 10 minutes, 3 times a week, to help prevent recurrence. So let's trade one cancer for another, right? That's the answer isn't it? And although I disagree with the tanning company, why are they promoting this during Melanoma month. Wouldn't it make more sense to do it during October? Sounds to me like they're also trying to down play melanoma month since all donations in May go towards breast cancer/vitamin D research. How sad to prey on someone with one cancer to sell their business and increase their risk of another cancer.

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adgesoph's picture
Replies 10
Last reply 5/6/2011 - 8:49pm

 

I just wanted to share that after a year of battling melanoma my dad has gone to be with the Lord.  Things went down hill quickly after not responding to IL-2, and braf and then b-raf for brain mets. We were hoping to give ipi a try but there just wasn't time. He fought to the very end and so badly wanted to beat this horrible disease.  His father and sister also battled melanoma and passed away.  

I wanted to say thank you for this forum and the knowledge and information you all share.  I admire all those that are fighting melanoma and hope and pray that a cure can be found.  Continue to fight and never lose hope.

My dad will be missed tremendously by many but we know that melanoma know longer has a hold of him.  

Here is my blog where I pay a little tribute to him if you're interested:

http://wwwourunexpectedjourney.blogspot.com/2011/05/forever-in-our-heart...

Thanks again for all you do and stay strong!!!

 

Adrienne

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I just wanted to share that after a year of battling melanoma my dad has gone to be with the Lord.  Things went down hill quickly after not responding to IL-2, and braf and then b-raf for brain mets. We were hoping to give ipi a try but there just wasn't time. He fought to the very end and so badly wanted to beat this horrible disease.  His father and sister also battled melanoma and passed away.  

I wanted to say thank you for this forum and the knowledge and information you all share.  I admire all those that are fighting melanoma and hope and pray that a cure can be found.  Continue to fight and never lose hope.

My dad will be missed tremendously by many but we know that melanoma know longer has a hold of him.  

Here is my blog where I pay a little tribute to him if you're interested:

http://wwwourunexpectedjourney.blogspot.com/2011/05/forever-in-our-heart...

Thanks again for all you do and stay strong!!!

 

Adrienne

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Shelby - MRF's picture
Replies 1
Last reply 5/11/2011 - 6:02pm
Replies by: Gene_S

The MRF has partnered with the Melanoma International Foundation to offer a free webinar to patients on Thursday, May 12, 2011 from 7-8:30pm EDT.  Please join Dr. Antoni Ribas to learn about The Changing Landscape of Melanoma Therapies.  Dr. Ribas, from UCLA, is a two-time MRF research grant awardee, once in 2006 and again in 2011.  To register for the webinar, please use the following link:

 https://www1.gotomeeting.com/register/269280121 

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