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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Anonymous's picture
Replies 8
Last reply 12/5/2015 - 3:00pm
Replies by: Anonymous, Janner

Hello so i received this initial report and was wondering if someone could please explain it to me.

From acral skin, there is a compct orthokeratoic scale that overlies the spinous zone and is approximately the same thickness as the prickle cell layer. There is a hint of increased melanin pigment among epithelial cells at the junction, but no distinct proliferation of melanocytes on these initial sections.

Diagnosis: Most consistent with acral lentigo right foot

Note: because of the suspicion for nevus i am going to cut deeper into this block and provide an addendum note.

Is this saying their suspicion it might be cancerous or are they suspicious it might be a mole (nevus). I tried to speak to my dermatologist but she was busy and the front office manager freaked me out by saying theyre probably doing it because it looks cancerous

 

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jahendry12's picture
Replies 2
Last reply 12/3/2015 - 8:36pm
Replies by: jahendry12, Anonymous

Wondering if anyone else is on this trial and if so, any info to share?

 

Thanks.

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stars's picture
Replies 4
Last reply 12/23/2015 - 1:45pm
Replies by: alynne75, stars, jenny22, Janner

HI

I'm just posting for some advice on anxiety.

I've had three thin melanomas - one stage 0 and two stage 1 (0.33 and 0.15mm respectively). This all happened beteen March and September this year. Since then I've gotten a second opinion/full skin check, and had a few more moles removed with mild or moderate dysplasia. 

As you can image, between March and September I was beside myself with worry. Since the second opinion and removal of only mild or moderatley dysplastic moles, I've managed to regain some peace of mind.

However, I realise that mentally I'm still really vulnerable. If I see anything near my scars I immediately panic. An insect bit me near one, clearly a bite that resolved the next day, and I fretted all night only to find it gone the next day. I got a pimple near another, again fretted and again gone the next day. I have a fleck in one toenail. A blood blister that's shrinking and growing out with the nail, and I still look at it and think melanoma. Tonight I thought I saw something near my scar, so I worried and was horrible to my kids because of it.

I just can't seem to mentally free myself of this disease... Its much better than before but I feel like its affecting my happiness and taking its toll on my family.

I guess I'm just reaching out for a virtual hug, I feel a bit silly knowing there's people here wit far heavier burdens to carry rhan me. Does anyone know how to manage this anxiety? I hace four-monthly skin checks... Why can't I just limit my worry in between?

Stars

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micheley's picture
Replies 14
Last reply 12/9/2015 - 12:44am

Hello everyone,

 I wanted to get back and update you all on my Yervoy journey. I had my first Yervoy infusion at the University of Pennsylvania -- 10mg/per kg of body weight -- on November 19th. I was hoping to be able to get the dosing reduced to 3mg/per kg of body weight but my insurance (Cigna) would not consider that dosing since the study from which the Stage 3 approval came - and for which the benefit was proven -- was at the 10mg dosing. Of course, by far, most of the side effects/toxicity experienced come with the 10mg dosing vs. the 3 mg dosing. It was a tough decision to make but, for me, the risks were something I was willing to accept.

So, I am just about 2 weeks from the initial infusion. About 4-5 days after the treatment, I started to experience some mild abdominal discomfort. In fact, I did not have a bowel movement (BM) for two days prior to the onset of the discomfort. Then, on the 4th-5th day I had a couple of normal BMs and a couple of loose BMs. The next day the same thing. Of course, I called the doctor's office right away -- since colitis/perforated bowel was how folks died in the clinical study. They weren't too concerned but told me to take Immodium after each BM and that if it happened more than 3 times the next day I was to call back and let them know immediately. Fortunately, although, the mild discomfort continued for a few more days the loose stools did not. My BMs had become softer but no longer loose -- first symptom dealt with! (NOT to be too gross but I also noticed a significant change in the smell of my urine. It has a very strong, chemical smell. It does seem to be lessening but it has indeed changed.)

Last week, about 1 week from the initial treatment, started a pretty good rash, which is a common side effect for a lot of patients, mostly concentrated on my earlobes, neck, face, upper chest and upper back, and my armpits. They are mostly small, individual, red, and pimple-like. They are itchy but not terribly so. The worst of it seems to be located under my armpits where the rash is more concentrated, raw, and sore. I started with a prescription strength cortisone cream at .1%, but it doesn't seem to be managing it so I got another lotion called in today which I will start ASAP.

So far to date, the rash is the worst of it but we'll see what each day and next week's 2nd infusion brings. I am scheduled for the 2nd infusion on December 10th. I am more nervous about this next one as the doctor indicated they see more effects with each treatment as the build up and change to the immune system is cumulative.

I will continue to update you all as I move through this journey. It is scary but something I feel I need to do to try to recapture a little peace of mind -- if there is such a thing with melanoma! Also, I would love to hear anyone else's experience on Yervoy if you're Stage 3 and underoing treatment.

Peace, healing, and comfort to everyone fighting this wicked disease.

Best,

Michele

 

Michele C Yerger

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Elbon76's picture
Replies 1
Last reply 12/2/2015 - 2:39pm
Replies by: Janner

One year ago I had a stage 1 removed from my neck.  I've had several checks since then that were clean.  

Recently, I've found a pea-sized swollen lymph about 1cm from the scar site.  Any advice regarding how reactive I should be?  Watch it a week or two? Or head right into my doctor?  

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jenny22's picture
Replies 5
Last reply 1/5/2016 - 7:02pm

Hi Everyone-  Hav a quick "opertaional", not melanoma question....

I have sent 3 messages to different members of this group...each indvidually...and each time I have checked the box "send a copy to yourself".

I have never received a copy, nor have I ever received a response from the people to whom I'd sent the message.

Each time I used the "CONTACT' tab in the members profile.

Any thoughts....must be doing something  wrong, but can't image what.

tks in advance,

jenny

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Toby0987's picture
Replies 12
Last reply 12/8/2015 - 12:50am

I was diagnosed feb 2013 with 3b Mel-right forearm mel went to right armpit-1 large Mel node. No other recurrences. I go to Mayo in Rochester. Any idea when the PETS will be just once a year or once every couple a years? 

Thanks-any experiences would be appreciated 

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mrsaxde's picture
Replies 6
Last reply 12/4/2015 - 11:32pm

I'm curious as to whether anybody with brain mets was asymptomatic when they were discovered? Here's why I ask:

Last week I saw my oncologist, and I told her I had been having occasional mild headaches.I have always had sinus issues, my sinuses have been bothering me lately, and these headaches feel to me like sinus headaches. They are very mild and don't last too long, and I notice sinus pressure when I have them. But I thought it was a good idea to mention them. So she sent me for a CT scan today.

I am having zero symptoms that might suggest brain mets. In fact, I haven't even had any headaches lately. But of course now I'm nervous that my scan might show something, and I thought I'd ask if any of you who have brain mets had no symptoms when they were discovered.

Thanks in advance.

-Bill

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Irbvorp's picture
Replies 1
Last reply 12/1/2015 - 10:43pm
Replies by: Janner

So I am just looking for some opinions about my current situation. My grandmother passed away from melanoma and my mother has had melanoma. I tanned in tanning beds and outside religiously for approximately 7 years. I now work in dermatology and I decided it would be wise to get a skin exam. I had 3 severally abnormal compound nevi on my back, all of which needed re-excision. The first has already been excised, the other 2 will be excised this Friday. I also had a mildly atypical compound nevus on my abdomen. The biopsy was performed 1 month ago and the area has already repigmented, with two  completely black moles now. My colleague advised that I should have it punched, which of course I will. My question is, could this possibly be a melanoma? I feel that it repigmented extremely fast and I am concerned now that maybe the shave biopsy did not remove enough tissue for pathology. Either way I know that once it is punched, if the margins are abnormal we will go back and remove more, however peace of mind would definitely be nice right now. 

I appreciate any and all help!

Thanks!

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jamieth29's picture
Replies 4
Last reply 12/2/2015 - 8:23am

Just read thus from Celest's blog and thought it was very promising
http://www.impactjournals.com/oncotarget/index.php?journal=oncotarget&pa...

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Anonymous's picture
Anonymous
Replies 5
Last reply 12/8/2015 - 5:10am
Replies by: Anonymous, Gene_S, arthurjedi007, Julie in SoCal

Hi Everyody

I have liver mets and lymph nodes involement.

I have had 3 Keytruda infusions.

I just got a copy yesterday from my doctor of my bloodwork and I noticed that my LDH is rising over the last two months.

It was always around 160 in the normal range and then it went up to 183 and now it is outside the range and has gone to 215. The scale is 100-190.

All other bloodwork and liver function is normal except for the eosinophils which have gone from .1- .55.  I have heard this is possibly a good thing?

My doctor didnt say anything at all about the LDH.

I am quite concerned with this as it seems from what i have read that this is a bad sign. And it is quite possibly related to the liver mets from what i have read.

The doctor has said in the past that things might grow before Keytruda starts to work and that i would need up to 6 or 7 infusions before we could be sure if it was working or not?

Has anyone been in the same situation or can they offer advice ?

Starting to really worry that Keytruda is not working with this rising LDH and time might be running out.

 

 

 

 

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sayres's picture
Replies 8
Last reply 12/2/2015 - 12:26pm
Replies by: sayres, arthurjedi007, Gwenmorgan, Anonymous

Diagnosed with stage 4 metastic melanoma in lings, liver, and lymph nodes July of 2015. I was started on the trial of Nivo and Ippi. My CT in November showed no change, my tumors were not responding to the immunotherapy.

I'm very depressed over this after seeing such good results for most stage 4 patients. I guess I'm part of the 50% who don't respond to the treatment. I did get very sick with rash and colitis. My liver enzymes went crazy and I had to go on steroids after 3 treatments.

Since there was no change my physician determined that we had to go a new route. I am now taking a combination of 2 types of chemo pills. Dabrafenib and trametinib.

Anyone have any experience with this? I'm looking for some hope here. I've heard these only work for a year and your body becomes immune and the tumors grow again.

Thanks...

Sheree

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mdoh's picture
Replies 6
Last reply 12/2/2015 - 9:24am

In a recent article posted on OncLive, James Allison on the Future of Checkpoint Inhibitors in Melanoma,  Dr. James Allison stated..."

What is on the horizon for immunotherapy in melanoma?

With the variety of combinations that have come to bear, the response rates are going to continue to go up. I think we are going to get to a point very soon where the majority of patients with late-stage melanoma are going to be able to look toward decades of response. To use the “C” word, I think we are heading toward a cure.

Thanks to all of you who posted recently about your ongoing battles with this demon called melanoma.  We're fighting a good fight and one day soon according to Dr. Allison we just might win!

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Brandon's picture
Replies 10
Last reply 12/3/2015 - 2:20pm
Replies by: Anonymous, Brandon, arthurjedi007, Momofjake, casagrayson

HI. My name is Brandon. I was diagnosed last month and am looking for others to share experiences with.

I'm 33 years old, married with two children.

Maybe 6 months ago or a bit more, I noticed a large mole on my scalp after getting my hair cut very short. I don't know if my hair had ever been that short so I figured it could have been there forever and I never noticed it. A few months later I noticed it was getting bumpy and was itching. I showed it to my doc and he thought maybe the mole had been cut by clippers as it looked scabbed. He had me come back in a few weeks and we'd see if it looked better. That next visit, we decided to cut a piece off and have it biopsied. Few days later, on November 5th, I was told I had melanoma at least 1.6mm. We won't know it's true size until after my surgery on December 11th.

A few days after the diagnosis, the headache began. It hasn't gone away since. It varies in intensity and travels around the head, but never goes away. There are also pains and itching in my scalp at the site of the melanoma and also in another area a few inches away.

Over a month is so long to wait for the complete diagnosis. I am taking Xanax to help with the anxiety.

I had a CT/PET scan done and it showed no signs of metastasis.

Thank you for reading and I hope to hang around here for a long time! 

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Nanners10's picture
Replies 8
Last reply 12/2/2015 - 10:11pm
Replies by: Nanners10, AshleyS, Anonymous, jamieth29

Hi all,

I am headed for surgery again following a recurrence in the lymph node basin. I have a couple of questions for you. First off, for inguinal lymph node dissections, what basins are still considered regional? Does having an involved lymph node in the iliac region still keep me in the same staging group? Secondly, how many levels of lymph nodes should be removed with this second surgery? The first surgery I had a year and a half ago was a superficial groin dissection, however, now I have one deep groin lymph node and one enlarged iliac lymph node, should all nodes up to pelvic area be removed? If anyone has gone through this if they could provide the extent of their surgery it would be greatly appreciated. I feel like my doctors are not being aggressive enough with their approach and want to ensure that this time I am doing as much as possible.

Nancy

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