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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NYKaren's picture
Replies 3
Last reply 5/29/2013 - 9:05pm

Hi everyone,

As many already know, I have been on Zelboraf, intermittent dosing, since the beginning of the year. Three weeks on, two weeks off.
During the last off period, previously-flattened (meaning disease-free) mets on scalp/ear began growing again.

As some also know, I've been trying to get into an anti PD1 trial for close to 2 years now. The restrictions have always stopped me, or when a new trial opened, I didn't have the measurable disease required, having been a partial responder to several therapies. So when I had this "progression", which halted upon resuming Zel, I photographed it & sent to onc. We decided together that since this will LIKELY turn into measurable disease, to stop Zel yesterday. MRI of brain & CT of chest & abdomen scheduled for 2 weeks from today. he said MRI should pick up measurable disease. I just feel that now is the time, because if PD1 fails me, I still have working Zel in my back pocket. Of course I'm second-guessing myself that I should have started last week, etc. etc. I guess that if after 2weeks they're growing but not to 1cm required, I can postpone a week. But as our beloved Boots used to say: Don't Look Back; Don't Back Down.

That's my story and I'm sticking to it, albeit nervously.
Karen

Don't Stop Believing

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In the United States, the wholesale acquisition cost of Tafinlar is $7,600 for a 30-day supply and Mekinist will be $8,700 for a 30-day supply, according to a spokesperson for GlaxoSmithKline. 

Read more: UPDATED: GlaxoSmithKline gains FDA OK on two genetically targeted melanoma drugs - FierceBiotech http://www.fiercebiotech.com/story/glaxosmithkline-gains-fda-ok-two-genetically-targeted-skin-cancer-drugs/2013-05-29#ixzz2UivZHflI

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then Thorocotomy...now "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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Hello again,

 

So my husband's stress test is next tuesday, his lymphnode surgery to remove all on the right side is 6/6 at Moffit, then the lung surgery is 6/20 at Moffit.  He is over the top with stress and I am keeping calm in front of him.   It is so overwhelming for him to go through, but there isn't a real alternative at this point.   Help me understand what to expect, and how to help him prepare.  We started walking today, a little to get his stamina up again, I am guessing low carb, high protein diet would be best.  Please let me know what you know from your experience.

 

Thanks, Mary

Hugs to all, patients and care givers.

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Anonymous's picture
Replies 2
Last reply 5/29/2013 - 10:42am
Replies by: Linny, Janner

I am really scared. Until today, melanoma was hardly on my radar. But the other day, a colleague came up to me after a meeting and suggested I get the mole on my arm checked out. I took her seriously because I have been wondering if it has been changing over last few months myself, but clearly haven't been paying enough attention, or I would have been to the doctor already.  I went today and the doctor took it really seriously, I was shocked. He asked me all sorts of things including family history of melanoma.  I am travelling at the moment, have an appointment with a specialist next week to have it excised and checked. The doctor I saw today made me promise to get it out as soon as I was home and definitely in no more than a week or so. Of course have been looking on internet today and reading, and my instinct says that this is a melanoma. It fits almost of those abcde or whatever things (except family history). Have been hoping to find some reassuring statistics saying that only a small proportion of spots sent off for testing are melanomas but can't find anything of the sort, which is making me worried. I can't stop crying, I am really nervous. Am I realistic to be worried?  Are there any reassuring statistics out there? I really appreciate your taking the time to read this and any advice you might be able to provide. 

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Anonymous's picture
Replies 3
Last reply 5/29/2013 - 9:45am
Replies by: Janner, Anonymous

My husband got diagnosed as lentigo maligna of the left ear auricle from a punch biopsy. (Mar, 2013)

He had a wide excision surgery at another hospital (Apr, 2013) and here is the exact copy of the post-surgery pathology report.

------------------------------------------------------------------------------------------------------------------------------------

Name of the specimen:  Skin

Test items:  Gross Photo (2ea)

                      Immun[ki-67(M1B1)]

                     Immun[Melanoma Ag(HMB45)]

                      Immun[S-100]

                     Immun[Melan-A]

                    [Resected Specimen]no more than 6  Histopath Exam

 

<GROSS DESCRIPTION>

The specimen labeled as  “left ear choncha area” consists of a portion of choncha, measuring 3.0X2.8X1.0cm. The skin shows a dark brownish pigmented lesion, measuring 0.7X0.4cm. It is 1.0cm, 1.0cm, 1.3cm, and 1.1cm apart  from the superior,  inferior, anterior and posterior resection margins. Multisected and representative sections are embedded in block A1 to A8.

Color key:   yellow: anterior,  red: superior,  blue:inferior,  green: posterior,  black: deep

 

FINAL  DIAGNOSIS :

Skin, ear, choncha, left, wide excision:

  1. Primary  tumor diagnosis:  Lentigo malignant melanoma
  2. Level of invasion(Clark level):
    1. Confined to the epidermis,

With all tumor cells above the basement membrane

      Note) Use only with thickness 1.0mm or less than 1.0mm(otherwise omit)

      3. Epidermal  ulceration:  Absent

      Note) Difined as the absence of an intact epidermis overlying a major portion of the primary melanoma

 

      4. Mitotic rate: 0/mm2

      5. Resection margin:  Margins  are free of tumor (superior: 1.0cm, inferior:  1.0cm, anterior: 1.3cm, posterior: 1.1cm, deep: 0.4cm)

      6. Additional features:

Lymphovascular invasion:  Absent

Neurotropism: Absent

Intraepidermal pattern(lentiginous)

Cell type(epithelioid)

Associate nevus(not  identified)

Lymphocytic infiltrate(non-brisk)

Desmoplasia: Absent

Tumor regression: Absent

      Note)  1. The result of immunohistochemistry;

HMB45: Positive

Melan-A: Positive

 S-100: Positive

 Ki-67 labelling index:  <5%   

                2.  Mapping is done.

                3. Intradepartment consultation is done.

------------------------------------------------------------------------------------------------------------------------------

 

I left what looks like spelling errors to me like “choncha” and “difined” the way they are, as I am not exactly an expert on these things.

 

My questions are:

  1. What is “lentigo malignant melanoma”? I have seen information about “lentigo maligna” and” lentigo maligna melanoma” but I have never heard of “lentigo malignant melanoma”.  Is it a spelling mistake? Or is it something else?
  2. Our dermatologist had said “lentigo maligna” is different from “lentigo maligna melanoma”, in that the former is a precursor to cancer, for which wide excision is required to prevent it from becoming a cancer. He said that unlike the latter, PET scan is not necessary for “lentigo maligna”.

But the surgeon he referred us to said “lentigo maligna” is one of the four major types of melanoma and prescribed PET-CT and CT scan, saying the parotid gland possibly has to be removed. This confusion and the conflicting information was the major reason why we changed hospitals.

Anyway, our new surgeon(a very specialized ear-reconstruction surgeon) said, after the surgery was done and the final pathology report was written, that my husband’s final diagnosis “lentigo malignant melanoma” is correct, but it is still the same diagnosis as the initial biopsy result. This doesn’t make any sense to us. Who/what should we trust and what should we do?

      3. What do the items in the parenthesis mean? And the result of the immunohistochemistry?

Intraepidermal pattern(lentiginous)

Cell type(epithelioid)

Associate nevus(not  identified)

Lymphocytic infiltrate(non-brisk)

       4. Is there a chance that the bad cells have spread to other parts of the body, because the initial punch biopsy cut into the tumor? One of the surgeons who did the surgery(a resident) mentioned it. This makes me really scared.

 

The whole medical process seems to be very disorganised and it is very confusing and disappointing.  I live in an Asian country where skin tumors are very rare and my husband is a Caucasian.  I couldn’t find any information on these anywhere in my native language. I will really appreciate your help. Thank you very much for reading this long post.

 

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Anonymous's picture
Anonymous
Replies 7
Last reply 5/29/2013 - 7:45am
Replies by: Anonymous, Janner

"Severely atypical compound melanocytic proliferation consistent with at least melanoma in-situ arising in association with a compound dysplastic nevus with features suggestive of partial regression and with foci suspicious for early invasive melanoma extending to a depth of approximately 0.30 mm.  The differential diagnosis would include melanoma in-situ arising within a compound dysplastic nevus that either has been irritated or undergone partial regression or a early superficially invasive melanoma arising within a compound dysplastic nevus with regression.  I favor early invasive melanoma because some of the melanocytes within the papillary dermis demonstrate similar cytologic atypia to the ones seen in the epidermis.  The atypical melanocytes extend to a depth of approximately 0.30 mm.  The stage would be pT1a.  The melanocytic proliferation appears narrowly excised in planes of section.  A re-excision as clinically indicated is recommended."  Also goes on to say, "Dermal mitoses are not identified."  There is a lot of vocabulary here I don't understand what it all means, but I know melanoma is serious.

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bkinman's picture
Replies 2
Last reply 5/28/2013 - 9:59pm
Replies by: NYKaren, aldakota22

I have been on Z since Feb 2013 with only one "holiday" from the med.  liver met shrank from 4cm to 2.2 from Feb to Apri while on met. Have been having the joint pain associated with Z since the beginning. Yesterday afternoon started having some mild discomfort in my right shoulder blade exascerbated when I take a deep or semi deep breath.  Go worse as the night wore on.  Now sharp pain on deep breath.  Has anyone had the joint pain in your shoulder blade or do you think it could be something else?

I had some small nodules in lungs on scans in Feb and April.  no change in April. Too small to call mass. No PET yet to see if they show up hot. Also, have lytic lesions on spine. One causing fractured verterbrae.  Had radiation on it Sept 2012. Have not had any pain from fracture in couple months.

Do you think this is just from Z or could it be lung mets or bone mets? I figured I would give it a couple days and see if it got better like the joint pain from the Z does; if not, then I go see my Oncologist. Thought I would ask you guys in meantime.

 

Thanks in advance.

Becky in Alabama

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Replies by: POW, Rebecca and Bob

 

Hello,
I am stage 4 melanoma survivor who is assessing the risk of pregnancy after cancer.  I have been in remission for 6 years and would love to start creating a family.
 
I am in the process of researching everything there is to know about pregnancy and melanoma.  I have found many studies about stage 1, 2 and even stage 3, but am yet to find anything on stage 4 survivors.  Is there anyone out there that is a stage 4 survivor that has had a successful pregnancy or know anyone who has?
 
 Thank you in advance for any help you are able to offer me.
 

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Replies by: POW

I'm now more nervous than before. I took your advice and I just picked up a copy of my pathology report here is what it says:

SURGICAL PATHOLOGY REPORT

MICROSCOPIC DIAGNOSIS:

Skin, left medial foot (excisional biopsy):
ULCERATED NODULAR AND INFILTRATING MELANOMA (BRESLOW DEPTH >5 MM), EXTENDING TO THE DEEP MARGIN. Immunostains (Melan A, cytokeratin 5/6, cytokeratin 7) are confirmatory. Positive and negative controls stain appropriately. Focal lymphatic invasion is noted. Dr. Sahmel has seen the slide and concurs.
Only a small amount of possible in situ melanoma is seen. While this can be explained by ulceration, clinical correlation is recommended to exclude metastatic melanoma.

SYNOPTIC

Procedure: EXCISION
Specimen Laterality: LEFT
Tumor Site: MEDIAL FOOT
Tumor Size: 1.5 CM IN WIDTH
Macroscopic Satellite Nodule(s): NOT SEEN
Histologic Type: UNCERTAIN BECAUSE OF MINIMAL NATURE OF IN SITU COMPONENT.
Maximum Tumor Thickness: > 5 MM
Clark Level: AT LEAST LEVEL 4
Ulceration: PRESENT
Margins: DEEP MARGIN POSITIVE FOR INFILTRATING MELANOMA. Because of the polypoid nature of the lesion, there is essentially no lateral margin to the specimen that is distinct from the deep margin.
Mitotic Rate: HIGHLY VARIABLE; UP TO 5 PER SQUARE MM IN SOME AREAS.
Microsatellitosis: NOT SEEN
Lymphovascular Invasion: PRESENT
Metastases: UNKNOWN
Pathologic Staging (pTNM): T4b NX MX

DBD/dbd

Gross Description: blah blah blah

This is concerning to me. Can someone give input as to what this means?

Thank you.

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deeczar's picture
Replies 8
Last reply 5/28/2013 - 2:02pm
Replies by: POW, deeczar, NYKaren, Anonymous, jmmm

Quick rundown... 2004 Mole left ankle biopsy Melanoma 1.05 mm, Clark's level IV, neg ulceration , miotic rate 2/mm2. I had a wide Excision and negative sentinel lymph node biopsy.
Jan 2011 new nodular lesion left shin area, melanoma
March 2011 wide excision and skin flap
Sept 2011 2 nodular looking lesions left shin area
Dec 2011 ILP MDAnderson with Melphalan and Dactamycian (I know I spelled that wrong sorry) not very successful .
May 2012 2 more lesions ..revealed dermal s100-positive spindle cell proliferation similar to the one seen in previous biopsy.
Dec 2012 Clinical Trial ILP with Temozolomide .. Unsuccessful, removed from trial and proceeded with 5 wide excisions and skin graft Feb 2013
March 2013 1month later finished skin graft on shin and had reexcision on 2 areas where the margins were not clear and skin graft on ankle where I found Sub Q?
May 2013 found new suspicious lesion left calf .. Referred to medical oncology at MDA
They had been talking about treatment with Zelboraf since I am BRAF positive, but I thought I understood it to be used as a last resort type of thing, and that people become resist to it after a short period of time. So far all my scans up until now are clear. So would another treatment be better before Z ?
I sure would appreciate any advice you have. It's late and I'm tired and worried so I hope I haven't confused anyone too much. Thanks ahead of time.

Dee

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Tiggerific47's picture
Replies 7
Last reply 5/28/2013 - 1:07pm
Replies by: kylez, NYKaren, jmmm, POW, Janner

My mom has melanoma.  It started in her nail bed 15 years ago.  She was clean, then 2 yrs ago it showed in her lymph nodes.  Those were removed, she went on a clinical trial of Ipi, but had to stop due to a seizure and then her brain showed two nodules.  They were high dose radiated and gone.  Then it showed in her lung 3 nodules.  As of 6 weeks ago one had just reached 1cm in size so she could go on a clinical trial for anti pd 1, but had to wait a total of eight weeks after having gammaknite radiation of the areas in her brain that keep popping up.  She went for her scans last week and we found out she has another two in her brain that are soo small, but now she has 3 lesions on her liver that are maybe 1 cm in size.  She wants to get on anti pd 1 badly.  At this time we are being treated at the melanoma center at Yale in Ct.  If she can clean up the tumors in her brain and keep it clean for another eight weeks that would be good, although the only trial that is being offered is a randomized Anti Pd 1 trail with basic chemo.  She wants nothing to do with general chemo.  We are wondering if anyone knows or can suggest and Melanoma centers that we can research and maybe seek treatment.  We are willing to travel and really would like to find a non randomized study.  Any suggestions would be greatful.

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Kelly7's picture
Replies 1
Last reply 5/28/2013 - 1:05pm
Replies by: hbecker

Happy Memorial Day!

I just wanted to update you on my brother's situation. 

To sum up:

3 tumors on Lung, stage 4(original site was on his back 4, 7, and 9 years ago)

IL2 (2 weeks in the hosptial, 20 bags total) February 2012

Yervoy  April -June 2012 (4 injections over 2.5 months, serious colitis in August-September) 

Latest scan May  2013, One tumor remains, intensity has shrunk. Doctor wants to cut out the last tumor, located on the outside of lung.

 

Surgery scheduled for June 6th! 

Will keep you updated. Hope this is the break we have been begging for.

 

 

 

 

 

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ad2424's picture
Replies 2
Last reply 5/28/2013 - 10:14am
Replies by: jcmp, Cindy VT

 

I'm telling my experience in the hope that it can help others. It took me a year and a half to get the courage/strength (mental) to write this.

In 1994, I had a mole removed from my back which was determined to be melanoma. I had a WLE but no treatment. In June 2011, I had a funny looking mole on my chest removed which was metastatic melanoma. Through VAT, I had a portion of my lung removed in July 2011.

I began to research adjuvant clinical trials. I was considering a trial with Dr. Webber. At my first three month scan on October 20, nodules were found throughout my lungs. So much for an adjuvant trial. They were all very small, measuring less than 1 cm. Since they were not big enough for me to qualify for a clinical trial, my choices were IPI (20% 5+ year survival in latest stats), IL-2 (stats below), or Zelboraf. I chose IPI but decided to scan again in one month, because after discussions with my doctor, we wanted to make sure they were viable and really growing.

The November scan showed some minor growth and so it was time to begin. I changed my mind though. I decided to first go with IL – 2.

There were a few reasons I made this decision. (a) I was otherwise very healthy and in good shape
(51 y/o, 5’8”, 150 lbs, running 2 miles a day). (b) The nodules were small and growing very slowly.
(c) There was belief among experts that one therapy might help a subsequent therapy.
(d) Finally, I wanted as many chances to kill this as possible. As a noted melanoma oncologist told me at the time:
High-dose IL-2 is still considered as a first therapy in this situation (it can eradicate disease, it doesn’t
burn any bridges, and appears to make subsequent immunotherapies work better).

I knew the treatment would be rough, but I also knew that I was in good hands. Dr. Janice Dutcher in New York had done more of this type of treatment than anyone else in the country. IL-2 has a 6% complete response and 10% additional partial response (http://www.ncbi.nlm.nih.gov/pubmed/10685652). Not great odds, but again I wanted as many chances to kill this as possible.

I suffered through three week-long stays in the hospital (Monday through Friday actually). After staying home one week after each week in the hospital, I was able to go back to work. It took a while but I am back to running 2 miles a day.

The good news, for now at least, is that my nodules have been stable since then. That makes about a year and a half. So, maybe I'll get a few more months of stability, maybe a few more years, or maybe my next scan will show the stability has faded. My main reason for writing this is because I think IL-2 has a bit of a bum rap. Yes it is harsh. But for those in certain circumstances such as me, it was not an unreasonable step as a first option. 

 

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Tiggerific47's picture
Replies 3
Last reply 5/28/2013 - 10:01am
Replies by: Anonymous, jenn84

My mom has melanoma.  It started in her nail bed 15 years ago.  She was clean, then 2 yrs ago it showed in her lymph nodes.  Those were removed, she went on a clinical trial of Ipi, but had to stop due to a seizure and then her brain showed two nodules.  They were high dose radiated and gone.  Then it showed in her lung 3 nodules.  As of 6 weeks ago one had just reached 1cm in size so she could go on a clinical trial for anti pd 1, but had to wait a total of eight weeks after having gammaknite radiation of the areas in her brain that keep popping up.  She went for her scans last week and we found out she has another two in her brain that are soo small, but now she has 3 lesions on her liver that are maybe 1 cm in size.  She wants to get on anti pd 1 badly.  At this time we are being treated at the melanoma center at Yale in Ct.  If she can clean up the tumors in her brain and keep it clean for another eight weeks that would be good, although the only trial that is being offered is a randomized Anti Pd 1 trail with basic chemo.  She wants nothing to do with general chemo.  We are wondering if anyone knows or can suggest and Melanoma centers that we can research and maybe seek treatment.  We are willing to travel and really would like to find a non randomized study.  Any suggestions would be greatful.

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Quick rundown... 2004 Mole left ankle biopsy Melanoma 1.05 mm, Clark's level IV, neg ulceration , miotic rate 2/mm2. I had a wide Excision and negative sentinel lymph node biopsy.
Jan 2011 new nodular lesion left shin area, melanoma
March 2011 wide excision and skin flap
Sept 2011 2 nodular looking lesions left shin area
Dec 2011 ILP MDAnderson with Melphalan and Dactamycian (I know I spelled that wrong sorry) not very successful .
May 2012 2 more lesions ..revealed dermal s100-positive spindle cell proliferation similar to the one seen in previous biopsy.
Dec 2012 Clinical Trial ILP with Temozolomide .. Unsuccessful, removed from trial and proceeded with 5 wide excisions and skin graft Feb 2013
March 2013 1month later finished skin graft on shin and had reexcision on 2 areas where the margins were not clear and skin graft on ankle where I found Sub Q?
May 2013 found new suspicious lesion left calf .. Referred to medical oncology at MDA
They had been talking about treatment with Zelboraf since I am BRAF positive, but I thought I understood it to be used as a last resort type of thing, and that people become resist to it after a short period of time. So far all my scans up until now are clear. So would another treatment be better before Z ?
I sure would appreciate any advice you have. It's late and I'm tired and worried so I hope I haven't confused anyone too much. Thanks ahead of time.

Dee

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