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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ljhncj12345's picture
Replies 3
Last reply 5/9/2014 - 9:07am

I had to bring the love of my life and best friend home on hospice over the weekend. He was responding to Tafinlar Mek combo but one of his brain mets started bleeding last week. He made the decision to come home on Hospice. Thanks to everyone on this board for all of your help. I was not a frequent poster but got lotsof support and help  from many of you the last year and a half

 

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starletwoman2007's picture
Replies 2
Last reply 5/9/2014 - 4:02pm
Replies by: kpcollins31, mary1233

Hi I have been hearing all the good things about Pd1 but wondered whether any patients have found it successful and how they have found it x

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Randy437's picture
Replies 3
Last reply 5/9/2014 - 4:48pm
Replies by: tcell, kpcollins31, gaby

My first grandchild was born this morning (number 2 on the way in August.)  When I moved to stage IV 6 1/2 years ago, I wasn't certain I'd live to walk my daughters down the aisle, much less see grandchildren.  NEVER GIVE UP.

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Jayjame's picture
Replies 4
Last reply 5/9/2014 - 7:59pm
 
 
My dad just found out he has stage 4 melanoma. Doctor said the disease already spread from his rectal to liver and I saw a lot of spots in his liver that doctor can't do the surgery. I'm so worry. He has only one option for treatment is ipilimumab (yervoy.) Doctor said that medicine only 10%-15% response. If the medicine respone, he can live 6-7 years. If not, he is done.

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aquamak's picture
Replies 3
Last reply 5/9/2014 - 8:15pm
Replies by: SABKLYN, aquamak, gaby

I am officially 1 year NED today!  I know it is a small step but it is a big one for me.  One year ago I was in surgey at MSKCC having a neck dissection and parotidectomy.  I chose watch and wait and participated in a Phase 1 Dendritic Cell vaccine at MSKCC.  I have been scanned evry 3 months with the exception of my anniversary this month (oncologist does not want to do scans this time as no symptoms and last 2 scans were clean).  Shooting now for 18 months and longer!

Mela-No-More

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gaby's picture
Replies 4
Last reply 5/10/2014 - 7:10pm
Replies by: Teochasse, gaby, Fen

Hi! My husband was diagnosed in 2012 stage3a melanoma , because he had micrometastasis in the sentinel node , the rest (12)  were clean. He had in 2012, 38 years old. He started in October 2012 with high doses of pegylated interferon for two months and after that continuous average dose to date. He was positive despite the side effects of pegylated interferon and was determined to complete the two years of treatment. He had from the diagnostic CT every 6 months thank God for all normal except when some nodes increased in size. So the oncologist  decided to make a pet. The result was very bad, there are many hot spots in the pelvis iliac chains, with SUV 2,7  other 2,1 other 1,5. The internal organs are clean.

The oncologist said he can not be certain that these nodes have melanoma and he can not make biopsy because nodes are too small. So he recommended repeat the pet in two months.  The oncologist believes nodes shine in the pet because they are inflamed by interferon. Also said that the iliac nodes can not be removed with surgery, that's very bad news….. you know if iliac nodes can not be removed with surgery?

So, Today we have the report of the second PET, and I am very very nervous ... If you increase suv is very bad news, your prognostic will be worse. I have fear because they can not remove the lymph. My husband has no options? my husband is very worn by treatment with pegylated interferon. He's not in good physical condition even though he has 40 years old.

Someone had a recurrence in nodes that can not be removed with surgery?

I have much fear. I feel that the situation has no control.

Regards

Gaby (from argentina)

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vicuk's picture
Replies 2
Last reply 5/11/2014 - 8:49am
Replies by: Anonymous, SABKLYN

I've not posted for a bit. Helen's scans have gone to every 3 months instead of every 2 and she is still doing really well. She is on GSK Tram/ Dab trial and has been for coming up to two years now. From being told she had 6 months to live with drugs to where we are now...She had her latest scan yesterday and we got results today and everything is stable/ reduced to a fatty deposit. Long may it last!!!

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michaelinsocal's picture
Replies 20
Last reply 5/11/2014 - 8:45pm

Hello everyone. Forgive me if this topic has been asked before. I am scheduled to undergo Interferon Alpha treatments next month.

it will be a 12 month program, 4 weeks of beonh given the drug through IV and 11 months of self injected shots. 

Ive done quite a bit of research and understand the side effects from the most common to the severe. I'd like to get feedback as well as any advice on how to deal with it initially and any helpful tips to survive the entire 12 month process.

i am planning on returning back to work, however just part time and claim partial disability until I can work myself back up to a 40 work week. I work retail grocery and being on your feet for 9 hours a day will be a challenge.

 

thanks in advance. Any feedback is appreciated.

Michael

 

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Mzimm1234's picture
Replies 4
Last reply 5/11/2014 - 9:54pm

Hi everyone! I have a worrisome situation that I would love feedback on. I'm wondering if any of you have had a similar experience. 

I was diagnosed with melanoma in situ on my right forearm almost a year ago. I had the WLE and have had regular skin checks since. I've had many moles removed but so far no others have come back melanoma. This past week I woke up one morning with a large, tender lymph node in my left groin. It seemed to pop up overnight. I immediately though the worst--melanoma.

I visited my dermatologist the next day and we scheduled a biopsy for next week. He was encouraging, noting that if the in situ had spread, which would be extremely unusual, it would likely have affected the nodes under my right armpit. He said he would be much more concerned if this were the case. 

I am trying to remain calm until next week, but I keep jumping to the worst case scenario. I have also had a pretty bad cold for the past week or so, could the lymph node have swollen due to infection? If anyone has had similar experiences or any insight I would really appreciate hearing from you. As always, the waiting is the worst!

Thanks so much!

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Anonymous's picture
Anonymous
Replies 3
Last reply 5/12/2014 - 12:01am
Replies by: casagrayson, jmmm, Anonymous

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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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