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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Abbygx2589's picture
Replies 3
Last reply 5/11/2018 - 8:41pm

Hello All,

I just wanted to express my gratitude for this board and post an update on my dad (I posted once before). He just made the 2 year anniversay of beginning treatment (ipi/nivo combo). He is stage IV and had numerous body (pancreas, lung, muscular, subcutaneous) and brain mets. The brain mets were treated with cyberknyfe with the exception of one lesion which was not treated  and instead left to be watched for his study which was assessing if the combo has efficasy in the brain (stressful). In his case so far so good! He did suffer from pituitary dysfunction which renders him unable to produce cortisol but we will take that over the alternative any day! There is also some radiation necrosis as some of the lesions were on the larger side. The lung has remained mostly stable, the remainder of his body lesions have disappeared and the brain lesions have shrunk but remained visible.  

So this brings me to the question what to do next? He was just informed that his trial has ended as it has reached the two year mark. He can either stop treatment and see if there is regrowth, have a PET scan to see if there is active cancer (but since you cant PET scan a brain we wouldn't know for sure if the spots in the brain are dead tissue or cancer), or attempt to receive nivo monthly through insurance. Since he is not "NED" I am concerned about him abandoning treatment. Has anyone experienced a similar experience?

I know no one can answer what to do for us, but I wanted to reach out to everyone and give hope to those who are stage IV with multiple brain mets. We are so happy to have my father here two years later and in good health. 

Thank you! 

 

 

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aquamak's picture
Replies 6
Last reply 5/12/2018 - 7:44am

Hello my friends:

Just doing a little writing therapy here.  Today I went for a PET/CT scan and will get the results Friday morning from my doctor.  When, and if all is well, I will officially be 5 years NED from Stage 3C.  The problem is that today after the scan was done, they re-scanned my head and neck so my heart is raising.  I asked the technician afterwards and he said he was sorry to make me upset but they supposedly had to redo the CT and PET of the head because he said I must have moved and the images weren’t lining up.  He claims that is all but I am so nervous!!!  Anyone have a similar situation?

Mela-No-More

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Anonymous's picture
Anonymous
Replies 7
Last reply 5/16/2018 - 12:33pm

Has anybody found relief from joint pain, specifically knee pain due to Keytruda? I have been off Keytruda due to joint pain and being NED since October of 2017 after 13 treatments. I was put on low dose Prednisone to slow my immune system down and then my melanoma expert rheumatologist prescribed plaquinal and hydroxychloroquine which after 2 1/2 months I had to stop because my liver enzymes went sky high and the combo failed to give me any relief. A cortisone shot in my knee was short-lived. I’ve done physical therapy, water exercise, purchased new orthotics, taken tumeric, CBD oil, ibuprofen,  acupuncture, chiropractics, rest, ice, heat, and compression sleeves. Both knees are inflamed and it is painful to bend my knees, walk, climb stairs and sleep. Any suggestions out there? 

Jackie Trimmer

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Anonymous's picture
Anonymous
Replies 1
Last reply 5/9/2018 - 10:05pm
Replies by: SABKLYN

I just noticed about a week ago that I have a small black spot under one of my toenails.

https://imgur.com/a/DoUJPwl

I know that no one on here is a doctor but I don't want to go to the doctors for something foolish . Should I wait and see if it grows out or go to the doctor now ?

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Anonymous's picture
Replies 1
Last reply 5/9/2018 - 6:53pm
Replies by: A79

Hi,

I'm obviously new to this board and I apologize if this is the wrong place to post. 

I just discovered a strange looking mole earlier this week and I have an appointment with my dermatologist tomorrow.  I was hoping someone might be give me an opinion about whether this looks like a melanoma.

All three photos are of the same mole, which is about 1/3" in diameter.  It started out flat (and all brown) years ago, but I just noticed that it is now raised (lumpy, not smooth) and is red along with brown.

Would really appreciate any input; I am pretty nervous.  Here is the link to the photos:

https://www.flickr.com/photos/39493375@N02/

Thank you.

 

 


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Anonymous's picture
Replies 7
Last reply 5/11/2018 - 10:27am

I'm looking for a recommendation for a daily facial moisturizer with sunscreen, that goes on under makeup.  Liquid foundation doesn't seem to go on smoothy with traditional sun screen underneath.  I've been using a product that works well, but it's one of those deals where you have to buy it along with additional products which are automatically shipped to you every couple of months.  So I'm in the market for new moisturizer, and thought somebody here might have a good recommendation.  I'm glad to be asking advice on such a minor issue for a change.  Thanks

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jagray's picture
Replies 1
Last reply 5/11/2018 - 2:55pm
Replies by: Anonymous

Hello everyone,

Im sorry to be asking here, but with the lack of information on this I hoped maybe someone who has or had this could clarify something for me.

I live in a small community, and my "doctor" is actually a nurse practioner.  I was scheduled for a complete physical, with a pap smear in February.  About a week before my appointment, I noticed a very swollen and sore lymph node in my right groin which prompted me to look a little bit better down there and see what was going on.  (Note: I did get sick shortly after the lymph node swelling, just seems like an odd place).

I noticed a dark brown spot on my right inner labia.  The area I would say is tender, and at times can be itchy.  And I suppose that is the majority of my question.

My NP didnt seem to be concerned about it, and just said that if I noticed any changes to come back.  I did some googling (bad I know), and it mentioned that itchy can be a symptom.  So what I am asking for others that may have gone through this is, was the itching constant?  Or did it come and go?  Right now I would say that the mostly tender when wiping after the bathroom, but sometimes it does also get quite itchy.  

My father was diagnosed with Malignant Melanoma in his eye about 29 years now, and had it removed.  I am not a person to run to the doctor as I dont like to be a burden on the health care system, I just am slightly concerned that maybe this is something my NP has not seen before or even heard of, and with Melanoma in the family I dont want to play around.  But I also dont want to cry wolf.

 

Thank you in advance for any help you can give!

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TexMelanomex's picture
Replies 3
Last reply 5/10/2018 - 11:55pm

Hey Warriors!!

I hope this finds you all kicking some melanoma ass!

Round 11 (I think?) completed yesterday and my first treatment since being bestowed with the coveted NED label. Treatment feels different now, mentally. Kind of difficult to describe...its a mix between being "easier", wondering "do I still need to do this" (even though I know I do), and a little bit of "now that you're down I'm going to keep kicking you!!"

I'm curious how others felt about treatment once they were NED? I fully understand this is a high quality problem and to be clear I'm not complaining! It just feels different now, good, but different. 

All of you warriors remain in my thoughts and prayers until ultimate victory is declared and this board no longer has a purpose, except as a place for nostalgia and remembering the "old days" when there was no cure.

A special shout out to Melanoma Mike as he starts the Ippy/Nivo combo this week, Big Mike is deep in the fight and has upgraded his weaponry to defeat this most insidious bastard of an enemy. You got this Mike, NED or bust!

Warrior On!

Tex

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Coach2u's picture
Replies 22
Last reply 5/9/2018 - 8:43pm

13 years ago I had a melanoma removed from my leg, 3 years ago a lump on my leg turned out to be metastatic melanoma.  I had been getting CT scans every 4 months and they were clear. In February I found another lump also melanoma and after surgery started Keydruda.  After 4 treatments it has not worked and now there is a spot on my spine and two tumors in my liver.  The plan is Opdivo and Yervoy as I am BRAF negative. Just got this news today and really scared, anyone have any success with this treatment? Had a vacation planned out of country bit not sure should go. Then I think I will never feel this good again but afraid of side effects.  

 

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ariana.bennett's picture
Replies 1
Last reply 5/9/2018 - 12:02pm
Replies by: Julie in SoCal

I went to the dermatologist today for a peeling black mole. He looked at it with the dermascope and said it was thick, dark, and irregular so he wanted to remove it. 

 

What does he mean by thick? The mole was literally flat on my skin. Does he mean thick like in depth? I'm so scared that it's nodular melanoma if it's thick downwards.

 

Someone please help.

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almostalice's picture
Replies 5
Last reply 5/9/2018 - 6:37pm

I re-read my medical notes from decade ago Meladrama and was reminded that I turned down genetic risk testing even with 6mm nodular ulcerated.

The onc.consultant was very honest in saying "hey you've had three primaries, there's your answer". The question was really did I want to undergo genetic testing for the benefit of other people.

Did anyone else get genetically tested on CDKN2A or BRAF aside from involvement with medication?

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Replies by: almostalice

Hi everyone,

I've had a small flaking/peeling black mole. My dermatologist looked at it through a dermascope and immediately said it looked really dark, irregular, and wanted to remove it.

 

I freaked out and asked him if he thought it was cancerous to which he replied, "well statistics are in your favour" which made no sense. I then said it wasn't getting bigger or anything and he said "yes but it should still be removed since its acting funny."

 

I am now CONVINCED I have cancer and I've had this mole doing this for 3 years but I was too scared to go to the Dermatologist. I should get a call within 10 days if it is indeed cancerous but for now I just need some reassurance.

 

Since he wanted to remove it do you think that means he believes its cancerous? Has this happened to anyone else? 

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almostalice's picture
Replies 7
Last reply 5/10/2018 - 7:25pm

Hey guys, I'm new but not new to the subject. Was diagnosed 2004, two primaries one was Nodular 6mm Stage 2C (T4b to be exact). Another primary found as in-situ SSM but not dysplastic 2011.

I'm from the UK and moved to USA. This'll be my first exploration in America for treatment.

I have watched an atypical progress behind my knee into what I think could be in-situ SSM but it already has the starting apperance of the nodular I have survived at least in part.

I called up a preffered derm however was given a 3 month wait as a new paitent. This will if positive by my 4th primary and my question really is should I wait the 3 months and take photos as evidence of evolution OR just get into any clinic regardless?

I'm not at all panicked and am numb to it which could be a bad thing or a good thing to get me through the wait. Any thoughts given the history?

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Dear MPIP community,

We are reaching out on behalf of a pharmaceutical partner who seeks the perspectives of melanoma patients as they design their clinical trial protocol. They need your feedback so that the design makes the most sense for people with melanoma.
One-on-one telephone interviews will be scheduled at the convenience of the patient.

If you:
•        are interested in providing feedback about trial design/protocol
•        are an adult patient with metastatic melanoma and
•        have failed a prior therapy with anti-PD-1 or anti-PD-L1

Please contact Beth Allgaier at ballgaier@melanoma.org with questions and to participate in a one-hour phone interview.
Thank you – your voice matters in the drug development process!

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Anonymous's picture
Anonymous
Replies 9
Last reply 5/9/2018 - 9:22pm
Replies by: guynamedbilly, dessie, Anonymous, ed williams

I was recently diagnosed with stage 3A melanoma, after a SLNB I was found to have “isolated cells” in one of the eleven nodes that were removed. I was given the options for immunotherapy with Opdivo or observation with aPET/CT and MRI Brain in 6 months. My oncologist suggested observation in his opinion but I am struggling with making this decision. I am 27 and want the best possible outcome long term. Are there any other 3A patients with stories they can share regarding their decisions and treatments. Thank you. 

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