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.

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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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Hello, I'm new here. Was instructed by someone on another message board to come here, post my report, and ask for "Regs or Janner".  Thanks in advance to all for your thoughts and advice, it is appreciated.

I had a small mole removed recently, after the pathology report came back the dermatologist said we needed to do further excision.  This is the first mole I've had removed with any suspicious findings.  Basically, the findings are equivocal, they say that they cannot exclude melanoma and report recommends conservative re-excision. This has already been scheduled, basically I need to know what questions to ask.

*********
DX: Lentiginous compound nevus dysplastic type with severe dysplasia, extending to all the margins with postinflammatory pigmentary alteration. Conservative re-excision is advised.  Comment: Pagetoid extension of melanocytes are seen. Special stains are pending.

Tissue measured 0.3x0.3cm in greatest dimension. Entire specimen submitted in one cassette.

Dermoepidermal junction contains a primarily nested melanocytic proliferation. Within the superficial dermis, discrete nests of melanocytes with slightly smaller nuclei are present. lateral to the dermal portion of the lesion moderately atypical melanocytes proliferate which bridge and fuse adjacent rete and are associated with a superficial fibrosis of the papillary dermis.  There is a proflieration of solitary melanocytes at the dermal-epidermal junction. In the superficial dermis, melanophages and scattered mononuclear cells surround capillaries.

Immunohistochemical studies reveal with anti-melan-A stain, a diffuse melanocytic hyperplasia with focal pagetoid extension of melanocytes.

Comment: it is difficult to exclude an early, evolving malignant melanoma in situ, superficial spreading type, arising in association with compound nevus dysplastic type with severe dysplasia, extending to all the margins.

*********

The pathology analysis was done by dermatopathologists, reviewed by a fellow as well as intradepartmental review session (all from a teaching hospital in NYC). All agreed on report.
 

My question is -- what stands out for you? what should I be asking my doctor? In the NYC area who should I ask for a 2nd opinion from?  what will they be able to tell from this larger excision, if anything? if they still can't tell if it's melanoma, then what?  Also, I'm in my mid-late 30s, female, if that's of use to know.

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Manubuzzi's picture
Replies 5
Last reply 5/6/2011 - 4:27pm

 

Greetings to all, 
 
Hope you are doing well. 
My mom already had two weeks of whole brain radiation and already finished a session of 6 days with temodar.  Since then, she has regained some speech abilities and her motor skills have (slightly) increased.  However, now, we have a new worry:  her concentration, comprehension, and memory have noticeably worsened.  She confuses colors and body parts, she cannot remember the names of her children, she has a hard time understanding orders, and she confuses her words.  At times she has moments of clarity where she is completely lucid and coordinated, but those moments are getting fewer and farther between.  
 
Has any one of you suffered these types of confusions with radiation treatment?  She does have several brain tumors, and maybe those are to blame for her current state, but I just cannot believe that they have advanced so quickly in so little time.  Please write me with your experiences or ANY advice you have.
 
A hug from Argentina,
 
Manuel
Son of patient

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Anonymous's picture
Anonymous
Replies 0

Hi Jim,

 

Came across one of your all posts & wondered how you are doing with your decision to have scans early or continue with the drug you are taking at Angeles clinic.

Decisions are always difficult when it come to treatment but I know that you will make the correct choice for you.

Please keep us posted.

Wishing you the best

Douglas

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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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I'm curious if anyone on Medicare has gotten Yervoy since FDA approval? I have found out that BMS does not have any assistance for those on Medicare. In calling Medicare, they cannot tell me if they can help. I was told they don't pre-approve, that my doctor's office can call an access number and talk to someone. I have a call into my doc's office and hope they will be able to find something out.

I was on the compassionate Ipi trial, which I finished Dec. 29, 2010.I have ocular and cutaneous melanoma. My first scan after the course was not good, with new liver lesions and lymphadenopathy. It was decided to scan again in Feb. My Feb. scans showed one less liver lesion and some reduction in a couple others, still lymphadenopathy. It was felt I was having an inflammatory response and that I also was eligible for re-induction, should I need it. April 7th scans showed decrease in hepatic metastases(now down to 4), decrease in multiple mesenteric metastases and retroperitoneal adenopathy BUT increase in size & number of mediastinal nodes. They're not sure if this is progression OR  Ipi/Yervoy doing it's thing. I'm scheduled for another scan May 24th. I'm hopeful, as all the abdomen STUFF looks better BUT am being pro-active in looking into getting Yervoy if upcoming scans don't look so good!

Thanks,

Nan

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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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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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Shelby - MRF's picture
Replies 9
Last reply 5/6/2011 - 10:05am

Hello everyone! 

We have had several requests for some change regarding the viewing of posts on the bulletin board.  We were able to get a quote on making an internal change to the website so that users can sort posts by personal preference, either by last reply date OR by original post date.  This will hopefully help with the issues that have been brought to our attention.  The quote was just given to us but we have given them the go-ahead to make these changes.  Once we have an estimated date that this will go into effect, I will announce that in this message.  Thanks so much for your patience, understanding, and input and please don't hesitate to contact me if you have any questions/concerns regarding this change.  Have a wonderful day!

Shelby - MRF

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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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CLPrice31's picture
Replies 7
Last reply 5/5/2011 - 5:41pm

I am not sure if you all have seen this. It was brought to my attention on Facebook from another melanoma warrior. I posted it on my blog, on facebook, and thought you all would love to see it as well. One of the beautiful ladies in the video emailed me today and thanked me for sharing the video with others. I believe I can speak for all Melanoma Warriors in thanking her for making this. It is EXACTLY what we need to promote melanoma awareness!

http://www.youtube.com/watch?v=_4jgUcxMezM&feature=share

 

Share it. :-)

"The odds are that the...the odds mean crap. So people should face it, and they should fight." ~Grey's Anatomy. http://adventurewithmelanoma.blogspot.com

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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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Carmon in NM's picture
Replies 2
Last reply 5/5/2011 - 3:08pm

It's been a long time since I had any fear or anxiety about seeing doctors so I was very surprised when I had a full blown anxiety attack yesterday about today's appts to see a neurologist and radiology oncologist to discuss whole brain radiation and radiation therapy at the adrenal tumor site. I ended up taking xanax for the first time in nearly two years.

I think what set me off was that I never expected to be NED again. I figured the best I could hope for was stable disease and that treatment decisions would be as easy as just continuing to move forward. Now here I am adjusting to having no measurable disease after a year of brain surgery, gamma knife surgery and chemo in a clinical drug trial so suddenly I have a whole lot to lose again. I'm just sharing this so that newer folks to this disease will know that all of us have our ups and downs, even after you've gotten the incredible news of being NED!

After my onc suggested WBR and radiation therapy as a prophylactic treatment, I dove back into the information stream and my husband and I have agreed to hold WBR as a last resort only. I have had no met activity in my brain for a year now so it makes no sense to us to take the risks of WBR as a preventative when there may be nothing to prevent. Plus, if I have active cells somewhere else in my body that later on migrate to my brain and throw a party again, then I would have lost that WBR option. So we are sticking to regular scans and hoping that if anything turns up, we can use gamma knife again to treat it.

I'm on the fence about radiation therapy to the adrenal tumor site though. It makes sense to me to do a prophylacic treatment there to make sure no stray cells are still living after chemo but I'm concerned about the affects to my body since the radiation would be happening in an organ intense area. So hopefully after today I'll have enough information to make that decision as well.

And just so you know, today I woke up happy, confident and with my sense of humor back intact again!

Carmon in NM - Stage IIIb 9/2008, Stage IV 5/2010 with brain and adrenal mets (craniotomy, gamma knife, clinical trial with carboplatin, paclitaxel, temodar) NED since 4/13/2011

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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boot2aboot's picture
Replies 13
Last reply 5/5/2011 - 12:41pm

I am curious to find out if anyone else got an initial diagnosis of IIIC? what treatments did you start? how were the results?

don't back up, don't back down

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