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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Grace999's picture
Replies 3
Last reply 5/12/2014 - 2:19am
Replies by: Grace999, Anonymous

Hi all,

i recently embarked on what was to be a 3 month trip around the globe... About two weeks ago while taking a shower, I noticed that a mole on the inside of my leg- that once had been raised, the color of my skin, but seemingly harmless- had turned a light brown color. A couple of days later, I noticed it had become even darker with a crustiness growing on top of it. I was burned very badly in this area about a year ago and have been keeping an eye on this thing ever since...

See it here: https://www.flickr.com/photos/77986407@N05/14169595603/

If I were at home, of course I would have it checked out immediately. However, I have about a month and a half left in my trip (which is very wide and taking me to places which don't necessarily give me access to good healthcare, let alone dermatologists). I'm wondering if this is so pressing that I need to return to the states immediately to have it looked at? How quickly does this grow or spread?

Thanks for any advice.

Your nervous traveller,

Grace

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sweetaugust's picture
Replies 26
Last reply 5/12/2014 - 11:02am

Hi there,

Just curious on your ages out there....what age were you diagnosed with stage 4 and how old you are now?

I was diagnosed with my primary melanoma (stage 2) at 26 years old, then went stage 4 at 38 years old and now just turned 40.  I'm doing great.  Just wondering how many of you out there are around the same age range? 

Laurie

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awg's picture
Replies 18
Last reply 5/12/2014 - 11:59am

Today was my first Interferon treatment. The day started at 8am with Oral Compazine for nausea, ibuprofen, 25mg IV Benadryl, 1000mL or normal saline for hydration, IV Zofran for nausea and finally the Interferon. The entire first day process took about 4 hours but should now go a little faster since I have one in the books.

I felt pretty good until about 4 hours after the treatment ended. I experienced all the FLU like sysmpoms, have a low grade fever. I did expel my lunch but I really think that was my fault for eating the wrong lunch. I will not make that mistake again. The worst part was the joint pain, chills and very mild shaking while felling hot. The worst of the symptoms (I hope) went away or deminshed in about 2 hrs and 30 min. 

I know everyone feels different during Interferon but I wanted to share my 1st experience since I have noticed many recent post about Interferon.

It is a very personal choice and I spent alot of time researching the subject to make a decision I was comfortable with.

I want to thank my family for all the worderful support and everyone on this board for all the information and your willingness to share your experiences.

 

Allen

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giggley's picture
Replies 3
Last reply 5/12/2014 - 5:19pm
Replies by: giggley, MattF

Hi! I just recieved a diagnosis of Melanoma yeserday, and was in such shock I didn't ask the questions I should, just mindlessly left the office with the book they gave me! They scheduled a surgery consult apt for me already, but I don't know exactly what I am facing here, since the report is in medical-ese.

 

Melanoma, focally present at one perihperal margine (see comment)

Non-Ulcerated.

Breslow Thickness: 1.1 mm

Mitotic Index: 4 (4 dermal mitoses per square milimeter)

Comment: Sections reveal an asymmetric compound melanocytic proliferation comprised of confluent nested and solitary melanocytes within the epidermis with abundant pagetoid extention. In focal areas, the epidermis is consumed by melanoma, but no definitive ulceration is seen. Melanoma extends to the dermis as discohesive mests and irregular groups of large melanocytes that fail to mature with descent. Ballon cell change is noted. An area of melanocytes in mitosis is seen within the dermis, measuring four per square millimeter. No lymphovascular or perineural invasion is seen.

 

anyone able to translate that into english?

**********************************************************************

Where are we going? And what's with the handbasket?

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rgrand's picture
Replies 5
Last reply 5/12/2014 - 7:13pm

Hello everyone. Thank you all for your efforts and support here. I apologize for the long post...

On 3/14/14 my GP noticed that I had a "dirty area" on my foot and didn't make much of a fuss about it. I had, on that day, a basal skin cell carcinoma that was on the back of my neck shaved off as well by the dermatology department. About three weeks later I got concerned about the discolored patch of skin on the sole of my foot because it didn't wash off and so I did a google search. I found similar pictures with those who were diagnosed as melanoma so I immediately contacted my doctor and they had another doctor look at it who was filling in for my doctor who was away on some continued educaton or training conferences. I do not know how long the patch of spotty brown/black areas have been on my foot. They are not raised or ulcerated.

My father died of metastatic melanoma in 1991 at the age of 61. I am now 54.

After the second visit and some photos they sent to the dermatology department, I received a call from the dermatologist the next day who wanted to see me immediately. I went in and she biopsied two spots on my foot with a 4mm hole punch. She punched and got most of the darkest spot, but left some behind because it was larger than 4mm, and another site nearby that had a different look to it, more like tar stains from the beach.

I received the biopsy results two weeks later and it came back as melanoma. I don't entirely understand the report. My BIL who is a doctor has told me that it's not in-situ, but it's about as good as it can get without being in-situ and that it looks like it's in my favor of being treated.

The dermatologist told me (and it's mentioned in the report along with a SLNB discussion) they would remove the area and graft some thigh skin off if it came back as melanoma (she's away right now too!) so I haven't spoken with her in a few days. She said I should be getting a call from the plastic surgeon to schedule the surgery, but I have yet to hear from that person. Do things normally take this long to get done? I'm going through Kaiser Permanente...and their seeming lack of aggressiveness is worrying me. They may be awaiting the results of a PET scan that I had done just two days ago to determine the timing for the surgery too. The Oncologist seemed to suggest that when I met with him.

I don't yet know what stage I'm in and am, obviously, worried given my family history and the large area on my foot that's discolored (about 2" x 2").

Here's what the pathology report says:

"The overal impression is that of a melanoma, which is Clark's level II, Breslow epth of 0.4mm, non-ulcerated with a tumor mitotic index of <1 per mm2. The in situ component and the invasive component are transected at side section epidermal and dermal margins. The diagnosis was rendered due to many atypical features seen in part B, and they include variation in nest sizes, confluence, adnexal involvement, diffuce pagetoid spread, and cytologic atypia. Part A is characterized by increased single units of atypical melanocytes with focal crowding/confluence. The proliferation is also transected at side section margins. Part A likely represents the edge of the melanoma.

In part A, there is an increased number of si ngle melanocytes along the junction. The meanocytes display hyperchromatic nuclie with irregular contour. Immunostains with Melan-A and MiTF highlight the slightly increased number of melanocytes along the junction with rare suprasal melanocytes. Nested forms are not seen.

In part B, there is an atypical meanocytic proiferation. There is a predominant junctional component wich is comprised of variably sized nests with bridging between the nests leading to confluence. The meanocytes are also involving acrosyringium. Pagetoid upward migration of single meanocyutes is seen across a broad front. The melanocytes display peomorphic nuclei with cherry red nucleoli and meanized cytoplasm. Similar atypical melanocytes are focally invading the dermis, and extend to the maximal depth of 0.4mm. Careful search reveal junctional mitotic activity; however fails to reveal conspicuous dermal mitoses. Melanin pigment is also seen difusely in teh conrified layer. Prominent pigment incontinence is also seen at the base."

Thank you for your help and support. I've not been able to go back to my day job because I'm just so depressed and can't focus. A 54 year old man should be such a cry baby!!!

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Scuba Doc's picture
Replies 2
Last reply 5/12/2014 - 8:39pm
Replies by: Bubbles, rosa1

Anyone know if any hospital starting the Expanded Access Program ( EPA ) for MK-3473 (Lambrolizumab/Pembrolizumab) is allowing melanoma patients to participate in the  EPA without having taken Ipilimumab first?

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Replies by: BrianP, JerryfromFauq

So of the trials available, those two seem like the most promissing. I am currently stage III, but am preparing for the inevitable IV, which is when I'll be ellegible. 

I'm thinking of first going with BRAF/MEK/PD-L1 combo because it seems like it's less drastic (TIL trial involves first nuking my entire immune system and being a bubbleboy for a month). 

From lurking around the forum, it seems like BRAF/MEK combo is almost always a temporary bandaid, and the cancer tends to come back. Is this always the case? Is the combination with PD-L1 meds more likely to result in long-term remission, or should I go straight to TIL?

How effective is BRAF/MEK/PD-L1 and TIL at preventing brain mets? This is my worst fear. Given my line of work, even mild cognitive impairment could ruin me.

Anyone who's been through either is welcome to share their experience. How'd it turn out? What side effects did you get?

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DZnDef's picture
Replies 10
Last reply 5/12/2014 - 10:44pm

Hi all,

I am Stage IV with  mets in 1 lung (13mm, 6mm, 3mm).  Unknown primary, and no mets anywhere else (yet).  BRAF V600E

I have seen several doctors all of whom want to start treatment right away but I am still weighing my options.  Here are the treatment paths that have been offered to me:

1)  Yervoy followed by Anti - PD1 if Yervoy fails - (Dr. Steven O'Day, Beverly Hills, CA)

2)  Clinical Trial # CMEK162B2301 - MEK162 and LGX818 BRAF inhibitor OR Vemurafinib (blind study) - Dr. John Fruehauf, UCI Medical center

3) Stem Cell vaccination trial (don't know number but here's a link to their site describing the trial) http://www.californiastemcell.com/cancer-stem-cell/  - I don't have a doctor for this one yet, just found it, but it looks promising (either 67% or 50% success rate, I'm unclear.  Seems way too high).  I have been emailing with the trial contacts who have forwarded my information to the head doc.  Waiting to hear back.

4) Surgical removal of all mets (lung surgery) - Doctor Shigeru Chino, (he removed my first met in 2012 from my right lung - which was misdiagnosed)

Apart from the surgical excision in 2012, I am a melanoma treatment virgin.  Does anyone have experience with any of these treatments?  Is there a particular sequence I should try them?  From what I've read on their site, option 3 is the "easiest" on the patient (fewest side-effects) and seems to have a reasonable success rate.  I just haven't read/heard much about it.  Option 1 seems good in that I know Dr. O'Day has loads of experience with these drugs.  But I'm concerned about my newly super-charged immune system going rogue (I'm deaf because of autoimmune problems).

I am currently seeing a Holistic practitioner of Naturopathic Oncology (Dr. Kristin Stiles Green, N.M.D., Thousand Oaks, CA) who is working on getting me to optimal overall health prior to starting any drug treatment.  She will also work with me during treatment in an effort to minimize any side effects and keep me otherwise healthy.

This is such an important decision and I just don't feel "qualified" to make it.  My loved ones just look on helplessly and tell me its my decision.  I'd welcome any input/advice/personal relevant experiences.  I will make my own decision for ultimately what feels right for me, but I would like more input from others before deciding.

Thanks so much for your help, everyone!

Maggie

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cbs805's picture
Replies 6
Last reply 5/13/2014 - 8:18am
Replies by: Tina D, cbs805, sweetaugust, Anonymous, arthurjedi007

Interested to hear how patients are doing on expanded access PD1.  My husband has had chemo, surgeries, radiation, Cyberknife, 2 rounds of ipi and now 2 doses of PD1.  After first dose his LDH was lower and he has been feeling better than he has in a year.  He was diagnosed in April 2013.

CBS805

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Erin_H's picture
Replies 6
Last reply 5/13/2014 - 8:27am
Replies by: Tina D, BrianP, Erin_H, Linny

Hello all

 

Sadly after 13 yrs melanoma returned. My primary was on my face and the new tumor was removed from my hip. 

Both times all scans came back clean and did not spread at the time. After getting the a-ok from the scans this time, I have been acting like I had Stage II in 2001 because the tumor this time was localized. Then I spoke to a doctor friend who gave me a reality check about the scariness of distant recurrence. 

Is there anyone out there that is facing something similar with distant recurrence and any advice. I'm going to visit a few specialists. 

I had Stage II at 24 and now Stage IV at 37 and I have a beautiful 2 year old that I want to see grow up. 

-Erin 

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jangle's picture
Replies 10
Last reply 5/13/2014 - 12:31pm
Replies by: Tamils, POW, Anonymous, Becky, AnitaLoree, kylez, jangle, mau

My nephew (12 year old) is at Kaiser in Oakland CA with metastatic melanoma in his central nervous system.  They are getting BRAF results this afternoon I believe.  He was hospitalized with vomiting and a seizure 2 weeks ago and had several spinal taps before the melanoma was confirmed by a surgical procedure.  Sorry for the sketchy info - I will add more details and clarify when I can.

I am trying to help them locate suitable specialist docs or clinics in the area (or anywhere for that matter) that they could be referred to.  As I understand the situation, Kaiser doesn't currently have a suitable specialist and will refer them out, but I don't know how hard the process will be nor what it will involve.

We need to act fast and I'd like to help them get through the red tape if possible.

Thanks for any help or experience you can share.

joe

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JoshF's picture
Replies 8
Last reply 5/13/2014 - 2:03pm

Hi all-

well it's been 3 months since I had scan after completing trial of ipi then HD IL-2. I did ipi Oct-Dec last year and then IL2 in Jan. Scan on Feb 17...NED. Scan yesterday....NED!!!! Obviously I'm very happy but I can never lose uncertainty. First question I ask is what is prognosis in comparison to other patients who've responded like me. Is it the IL2 or ipi...or both???? It's like I almost feel guilty or it's too good to be true. Am I crazy or is this normal? 

So my oncologist gave me option of scan in mid August or push it out to beginning of Oct. she felt comfortable waiting as she said there is no disease to track. Am I crazy for doing this? The rationale is over exposure to radiation as like many of you...I've had my fair share of runs through the tube! The study I'm on requires scan in Oct-Nov as this is the 1yr time frame.

i hope everyone here is well. This site and many of the people have been a tremendous resource & support. I can only hope that treatments that have a broader scope in helping people are in the near future....c'mon PD-1!!!!

josh

Let's work for better treatments....for a cure!!!!

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ray39's picture
Replies 3
Last reply 5/13/2014 - 3:21pm
Replies by: ray39, sweetaugust, Anonymous

Still waiting on biopsy results but been doing research.  Why did I have what appears to be a shave biopsy?  The growth appears to be gone but the research I've done doesn't recommend this for melanoma situations.  Man this is frustrating!   The punch biopdy would have given a better idea of depth it appears.  

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Linny's picture
Replies 2
Last reply 5/13/2014 - 11:07pm
Replies by: Anonymous

This looks like a good trial for Stage III patients. You may want to ask your doctor about this one!

 

A Study of the BRAF Inhibitor Dabrafenib in Combination With the MEK Inhibitor Trametinib in the Adjuvant Treatment of High-risk BRAF V600 Mutation-positive Melanoma After Surgical Resection. (COMBI-AD)

This is a two-arm, randomized, double-blind Phase III study of dabrafenib in combination with trametinib versus two placebos in the treatment of melanoma after removal by surgery. Patients with BRAF V600E/K mutation-positive cutaneous melanoma that has been completely removed by surgery but who are at high-risk for recurrence [Stage IIIa (lymph node metastasis >1 mm), IIIb or IIIc] may be eligible. Subjects will be randomized to receive either dabrafenib (150 mg twice daily) and trametinib (2 mg once daily) combination therapy or two placebos for 12 months

http://clinicaltrials.gov/ct2/show/NCT01682083

Stage III, Unknown Primary; 1 positive node in left axilla; currently participating in GSK DERMA (MAGE A3 vaccine) trial

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