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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Surf Rower's picture
Replies 4
Last reply 10/18/2016 - 4:50pm

I am Stage 1A and preparing for a larger re-excision on my upper arm (with general anesthesia) since the first one didn't get it all. I am seeing a surgical oncologist now for the second one. He mentioned he was going to have the slide reviewed from the first excision, because it might not really be necessary. Preparing to call him back to check on this, I want to know what to ask.  The path report said Melan-A and CD68 were used but in some light googling I found (old) articles saying those were not the best markers, as they also show up in benign nevi. (My dermatologist was "surprised" that his biopsy came back melanoma, as the lesion was a pink/red small bump.) What do you think, and what should I be asking the oncologist, later today when he might call back.  Thank you!

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Anonymous's picture
Replies 14
Last reply 10/19/2016 - 1:27pm
Replies by: Bubbles, williez, Anonymous, Polymath, Ed Williams, Hukill, Patrisa

Hello folks,

Crossed the stage IV bridge from watchful waiting . No previous treatment other than surgery.

Liver mets diffuse confirmed by MRI after CT scan.

Have been given two treatment choices 

ipi 3mg for four doses every 3 weeks same time as nivo 1mg

then nivo 3mg every 2 weeks

OR pembrolizumab 2mg every 3 weeks.

LDH normal

Don't know pd1 expression but trying to find out as was in placebo wing of previous trial in that info is held on file- just not sure I can get to it.

IPI / nivo requires brain MRI and would probably start a week later than keytruda..

Have background eczema and arthritis that would probably flare with ipi..

Wrestling with the fact that neither may work but that ipi /nivo has best chance but worst side effects. Know I'm lucky to have the choices but really unsure. Do I flip a coin ?

Any advice or wise counsel very welcome-  Would be easier if ipi dose was lower-

Thanks to all

 

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Dear friends,

We are looking for one patient (advanced stage) and one caregiver in the Dallas, TX area who are interested in participating in a usability study for a pharmaceutical website. These are similar to focus groups, but they are one-on-one. The goal of the research is to make a more user-friendly website for patients and caregivers. Participants will be paid $100 immediately following their sesion. Sessions will take place in the Las Colinas area on November 8-10, but those interested participants who qualify will only need to attend one 75-minute session on one day. 

If you are interested in this opportunity, please send me an email at education@melanoma.org. Thank you for your help!

Best,

Shelby - MRF

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An ad popped up on my Facebook page today for a company known as Science 37. Naturally, I was very leary about giving them any of my personal contact info, and questioned the validity of their business at all. However, after doing some poking around the internet, this looks legitimate. I'm just curious if anyone has heard anything about this, and if it is something a patient or their caregivers would be comfortable doing? At this point, I am still rolling NED... fingers and toes crossed for brain and body scans in two weeks... so I'm not in a position to need this kind of "at home trial" option. Buuuuut, I can see both positive and potentially negative potential here........... 

https://www.pehub.com/2016/10/science-37-raises-31-mln/

 

http://cancersnewnormal.com

-- Niki

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snow white's picture
Replies 5
Last reply 10/18/2016 - 10:33am

Hi All-

whewwwww....its been a very eventful last few days.  I am finally at home to rest.  We stay with him 24/7 at the hospital, Mom and I take turns and I had him for 2 days straight, so exhausting since he can't do anything for himself. The hospital is about 40 miles one way from my house.

Anyway, as of this moment he is doing much better.  He is regaining his movement back!!!  Moving that left arm and hand that was almost paralyzed before surgery, still struggling with the left leg and foot.  Obviously he is still very weak, but thats ok.  He is still in the hospital and physical therapy is working with him.  He will probably be transferred by ambulance to a rehab facility tomorrow for 7-10 days depending on how he does.  So that brings up another subject.  We are 11 days out from his Gamma Knife procedure.  We had hoped to start him on NIVO this coming friday, but we are being told that once he is checked in to the rehab that we can't take him out for his infusion???  they say that he has to stay there.  This concerns me as I am very anxious for him to get started ASAP with the NIVO.  I am going to dig deeper into this tomorrow when I go back down there.

So far thats the latest.  Feeling relieved that he is doing better :)

Jennifer

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Anonymous's picture
Anonymous
Replies 8
Last reply 10/19/2016 - 10:03pm
Replies by: POW, WithinMySkin, BrianP, Janner, Anonymous

A friend of mine was just diagnosted with malignant melanoma Stage 0, which I think is "in situ", right? His doctor just took a punch biopsy and said no further treatment was necessary. Is a wide local excision (WLE) usually ordered for a Stage 0?

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dmturner's picture
Replies 5
Last reply 10/22/2016 - 12:15pm
Replies by: dmturner, Treadlightly, Anonymous

I went to my doctor that did the Mohs procedure for my original melanoma on Thursday.  Finaly, since 4/10/16 it is pretty much healed.  In the well lit room I was able to see a couple spots close to the original site that had me concern before the doc came in.  I pointed them out, he said they are not dark like melanomas but he did a biospy.  Got the call today.  POSITIVE FOR MELANOMA.  What?????  I thought we had clean margins?!?!  What about the Yervoy?!?  He said these might be satellite cells.  So they want to do another Mohs procedure in the morning.  Wait.  What?!  So I called my ocologist, spoke with the nurse, she said "get it out".  My aunt who is nurse MD and specializes in skin cancer said to call my surgical oncologist.  I did.  The nurse calls back she said "Do not do the Mohs procedure."  "It is fine for the first time".  But for additional areas close to the original site not so much.  So going to see oncologist on Wednesday anyways for my last Yervoy.  Maybe, maybe not going to have the infusion.

Anyone else have this??

Donna

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SOLE's picture
Replies 4
Last reply 10/17/2016 - 11:16pm
Replies by: Linny, Ed Williams, Anonymous

Back from my oncologist appt. I should say right away that I live in Canada.

All she wanted to talk about was adjuvant treatment in light of what is accepted by Health Canada. Hear that: interferon or watch and wait or c'inical trials but I got to have a CLND. No Ipi available in Canada as adjuvant for stage 3... And the triials offered now are pembro-interferon or placebo-vaccine.

I am completely lost. Even with my light tumor burden, she could not pass by the fact I am a 3B she stood firm that my chances are 50-50. Not supportive is an euphemism. Did not want to expand on anything else...

I wanted to finally get support in this battle and I got the complete opposite.

She seemed young like in her 30s.

Anybody has some solid melanoma specialist name to give me in the Montreal area...

And only 2 scans a year because of all the toxicity involved... so how do you keep a close eye on my situation? France and the US for the first 2 yesrs is 4 scans per year... 

Please someone help.

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JoshF's picture
Replies 13
Last reply 10/19/2016 - 10:38am

GoodMorning!!!

So I didn't know how to frame the subject up to reflect what Ireally want to ask people who have responded to treatments.

This is for those that had palpable lymph nodes or sub-q's....

How long until you noticed things shrinking once treatment started? Weeks....days??

Once things started shrinking how long did it take to resolve...go away?

So I have numerous sub-q's but I notice 1-2 of them are noticeably smaller while others haven't changed though I have aother that is sore...possible Tcell inflammation? It's been just over 3 weeks since Tcell infusion. They said give it time but I never had this experience before and don't know what to expect. I'm grateful that it appears my immune system is attempting to mount a response. Any experiences anyone can share would be great!!!

Be well all!

Josh

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

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Anonymous's picture
Anonymous
Replies 16
Last reply 10/24/2016 - 3:41pm
Replies by: Alce123, Anonymous, cancersnewnormal, stotesbery

I was wondering if any Melanoma Warriors have progressed from stage 1b melanoma dx to having liver mets.  Only indication was high ALT reading on blood test, some mild stomach fullness.   I would like to hear other's expierences.  You go from being advised that 1b, be mindful but don't dwell on it, your cured to WTF liver mets.   

Thanks

Kay

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youngann's picture
Replies 7
Last reply 10/20/2016 - 1:44am

I just had my 3rd dose of Ipi 3mg/kg and, so far, in addition to 5 days of constipation with each dose, I’ve had only mild nausea, itchiness and fatigue. However, since starting the Ipi, about 3 or 4 times a week, I’ve had a spell of vertigo when getting into bed at night. It’s only happening after I turn out the light and as my head hits the pillow. I have to force myself to stare at the alarm clock in order to stop the bed from tilting and trying to tip me onto the floor.

My thought is this is something totally unrelated to melanoma or Ipi but I was wondering if anyone else had experienced this dark vertigo thing while under treatment.

Ann

http://www.cafepress.com/daybreakdesigns

Home of the original "Crappy Shirt"

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SOLE's picture
Replies 8
Last reply 10/18/2016 - 5:20pm
Replies by: SOLE, Anonymous, Joycem, debwray, jennunicorn

Hello all

Here is a brief summary of my situation

T3bN1aM0 (as of august for pet and CT and sept. for WLE and SLN)

Primary on plantar of the foot: Breslow 2.85 (at least), Clark 4, Ulcerated (bled for a month before removal), mitoses 4mm2, vertical growth phase, lymphovascular or perineural or microsatellitosis absent, TILs present non brisk.

WLE: ALL margins clear despite a small 5mm portion missing of tissue because of toes that were saved. Breslow 1.47, no ulceration, mitoses 0mm2, lymphovascular or perineral absent. Microsatellitosis: no clear evidence, TILs absent.

One sentinel node out of three; found ´rare isolated cells' only. Onco surgeon said no CLND necessary.

Here is my plan and I would like to have feedback from you.

I will be given up a new scan schedule and all but even if my first scans come up clear (which I think they will given my short history) here is what I would like to try as adjuvant therapy.

I should say that I think Ihave more chances than others the mel cells have traveled through my blood stream and not so much my lymph nodes.

I am 48 male and in good health, lost all my extra weight this summer through dieting (20lbs) plus another 15 lbs since then out of anxiety. Apetite is there when moral is good and now I am taking more and more ownership of what's happened. I have no intention of letting this disease win over me. Have a beautiful soon to be 14 years old daughter and a very special girlfriend by my side. Work seems to resume for me (am self employed), phone rings and I have Life saying to me: are you going to continue living or what? Hell yes!

Here is my plan. Interferon: no. Ipi alone: no I dont see much advantages of doing this alone since only 20% respond to that drug. So I am looking at the combo ipi+nivo. I know its not standard of care and that it has its share of side effects but listen, if I progressed to Stage 4, I would be offered that combo so why not be pro-active instead? If I'm not mistaken, there is about a 50% response rate which is the highest rate out there.

That is my thinking. I dont have anything to report about lumps or secondary mel or lesions on my skin despite the huge amount of nevi I have. About inside my body I guess my first scan will show what the situation is. I think it will be negative.

In other words, I plan to remain stage 3 for the rest of my life or until they find a cure in about ten years from now.

Toughts on my plan? Sode effects to expect and for how long? Maintenance doses or not?

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Gert's picture
Replies 3
Last reply 10/17/2016 - 7:24am
Replies by: Anonymous, youngann, Jango

Hi all...originally diagnosed in 2003, stage 1a, WLE, no further treatment. Have a flesh colored mole on my forehead, has been there my entire adult life that is now larger and darker and hurts. I'm scared...calling my derm on Monday. 

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Dad is still here at the hospital.  The progression is very slow. He still cannot move well, walk, feed himself, get on the toilet etc.  Its so scary.  Mom or I are here with him 24/7. Not sleeping more that about 1 1/2 hours at a time.  He is so miserable.  Last night he told me he wanted to die.  I know he is just frustrated and miserable, but I hate hearing him say that. 

So the game plan is to start him on NIVO (I hope I have all of the names correct, the last few days is a blur).  The thought process is that he is 72 years old, just had brain surgery and is recoving from it.  We need to get somthing going ASAP. The Ono (that Dad likes) met with the Brain tumor board that included a Melanoma specialist yesterday and that is the conclusion that they all came to, his Ono is also in communication with the doc at City of Hope and USC.  They feel that he will tolerate 1 drug better right now instead of starting on a combo of Nivo/ipi? and they feel that we can add anthother drug later if he doesn't respond well.  The Brain surgeon hopes that he will be released this coming Thursday (we shall see) and they are hoping to start with the NIVO on Friday.

Thats the latest.

Jennifer

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Maria C's picture
Replies 9
Last reply 10/17/2016 - 10:10am

Hi everyone,

After a spring-summer major battle with brain mets, my fall MRI shows nothing new and previous tumors all shrinking! The surgery + SRS +  pembro seems to be working, although the pembro is knocking me out physically with sore and weakened muscles and major fatigue. Small price comparatively now that I finally feel I have a shot at controlling this monster disease! Just wish I felt well enough to celebrate with a long hike in this gorgeous weather!

Am on ibuprofen in the hopes of warding off another steroid episode but am nervous we'll inadvertently knock out a gland or two if we wait too long....??? I've gotten used to steroids playing a safety-net role during side effects. 

Main news to share is that the ringing in my ears has nothing to do with active tumors. So, Happy News!!

 

 

Maria - Stage IV, MM, brain mets, responder to ipi/nivo combo

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