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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Dreaf01's picture
Replies 1
Last reply 7/27/2018 - 1:12am
Replies by: AN8

Hi all, 

First of all I wanted to say that my situation doesn’t compare to most of yours and how strong you all seem to be during these times. I appreciate any advice/encouragement that can be given. In Dec. 2016 I was dx with 1.5mm MM on my right upper thigh, negative SLNB. Fast forward to now I have had several biopsies and a major one being right next to my WLE/original melanoma scar. When the biopsy near my scar was done it was a deep excision and the area has been swollen since (bx done 12/2017). There is a hard square shaped lump in that same area that feels hard, but is painful and seems to increase in size with irritation. The area is very tender to touch and is warm. I had an appointment today with my dermatologist and he is recommending an oncology  referral and was asking me if I had any scans done, etc. He scheduled me for an excision at the end of August. 1), if he is suspecting a recurrence why is he waiting so long to excise/bx it? 2). Is a referral to an oncologist jumping the gun before a biopsy is done? 

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TexMelanomex's picture
Replies 11
Last reply 7/19/2018 - 12:24am

Hey Warriors!

Today I completed round 14 of Pembro and got results back on CT and MRI from yesterday. First, all scans were clear so I remain NED! (YES!!!). I'm still tolerating the Pembro well but my thyroid (TSH) has started to climb and fluctutate so I'm starting Synthroid tomorrow. I have noticed more fatigue and I'm hoping it helps get me back to full throttle. Anyone have any experience with this? TSH wasn't crazy high (and T3 and T4 were still in normal range) but I definitely felt more fatigue following these last few treatments.

I hope you are all kicking some melanoma ass and staying well engaged in the fight. 

Shout out to MelanomaMike who completed his third round of Ippy/Nivo today, NED or bust!

Warrior On!!

Tex

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Hello all I am new here,  but have been reading all your posts for the last few months.   Here is our story.   My husband is stage 4 melanoma,  we were diagnosed last August with it in the lungs, brain and adrenal glands.   He is Braf positive and we were on targeted therapy  Debrafenib & Trametinib.  He tolerated the therapy well with minimal side effects.  The tumors in his lungs and adrenal glands were shrinking.  But the brain kept progressing.  We did gamma knife in august for the first 13 spots,  they were stable , but in October 7 more cropped up and we gamma knifed them too,  in December all previous spots in the brain were stable but 6 more cropped up and we did gamma knife again.  in Feb 2018 we did CT scans and the spots in the body were still responding and shrinking .  Which was all good news,  but the follow up MRI  in mid-march now showed 20 new spots in the brain.  The radiation oncologist recommend whole brain radiation , so we did that  and we switched to immunotherapy Keytruda.   We completed whole brain April 16 and started on Keytruda May 16th  .  First follow up MRI on the brain showed for the first time no new spots.  But 30 spots progressed.  We decided to hold on more gamma knife and see if this could be pseudo  progression and see if it will resolve it self. Since he had normal post radiation side effects which were normal .   Recently in the last few days we are noticing some confusion, and walking issues,  our next MRI is scheduled Aug 3rd  and I am worried.  Any encouragement any one can give would be great.

 

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tedtell1's picture
Replies 2
Last reply 7/20/2018 - 5:40pm
Replies by: tedtell1, marta010

I could use some help, if anyone has had experience with significant throat/voice issues from NIVO/OPdivo,

My onco is pretty much stumped, I have been having minor issues (sore throat, spots, hoarse) Then over the last month it has gotten worse, and since I have been on Prednisone for a while (a whole nother issue that I wont go into right now), they expected the steroid to calm it down. The throat/voice issue has actually progressed further in the last couple of weeks to the point that my throat is constantly sore, and my voice is quite weak and comes and goes frequently. They did a C-scan on my throat and everything looks okay, but ENT peeps are going to look at my vocal chords on Friday. 

I am a special education teacher of students who have substantial impairment, some cannot read thus I really need my voice when I go back to school the end of August. My present condition would not work. My voice quickly departs after a short conversation, never mind speaking at any decent volume for sustained time.

Any experiences/potential treatments would be appreciated. 

Blessings to all you warriors, I have to keep reminding myself I am still NED!

Ted

Ted Tellman

Stage IV initial, currently on Nivo 1x per month. WLE in Feb 2018, NED after surgery and recent scans. Treatment at Regions, St. Paul, MN, Dr. Dudek

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JuTMSY4's picture
Replies 1
Last reply 7/17/2018 - 3:54pm
Replies by: ed williams

Looks like I'm back to NEAD/NED!  Got the final part of my CT scan yesterday and there's nothing there.  Plus, I've lost a little weight (on purpose) that's reduced some fatty tissue around my liver which makes things that might have been cancer far less conspicuous (they probably were never cancer as far as anyone can tell, right now).

We're going to keep "re-doing" pembro for probably 9 months, although my doc said she had my DNA sequenced since I signed off on a variety of research forms and that I might be a prime candidate for a small study on vaccines.  

https://www.nature.com/articles/d41586-017-08706-3

Not sure if anyone has ANY experience with this (looks like maybe 30 people have tried it in one study or another).  We're not sure if it's gonna happen or if I'm going to stop Pembro or pause it or anything.  I'll keep everyone posted!

-j

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Riven's picture
Replies 6
Last reply 7/17/2018 - 11:11pm

Below, between the asterisks, is how I updated my friends and family on my situation.I'm still pretty lost on this whole thing, and to be honest, putting it all into words has really shaken me up.  I'm really just wondering if I've gotten it all correct. Also my doctor seems to think that side effects rarely happen with PD-1, but I'm just not sure.

Any feed back, corrections, or knowledge would be amazing!

-Becca

****As a lot of you know I had my first appointment with Dr. Richart, my medical oncologist, on Wednesday July 11th. My first impression of him is good. First, he reminds me of my pediatrician. Second, he is very confident in the explanation of my treatment. Third, he was extremely blunt with the possible side effects and the ramifications of the treatment. This is a very good sign. The people in the forum I am a part of have warned me that doctors might not be forward with me, not only because I am a woman, but also because I am young. I am very excited that this is not the case.

I feel like the best way to show everyone what I learned on the 11th, would be to present it in bullet form. Below are the notes my mom took in my words and beneath that is the treatment plan.

    It is true that I'm NED, but that doesn't mean that I have NO melanoma in my body, to be perfectly honest we just don't know.
    We want to decrease the chance of recurrence, especially since the melanoma had traveled to my lymph nodes.
    The way to fight melanoma is actually to accelerate the immune system so that the immune system will attack the cancer.
    Cancer is basically just messed up DNA.
    I am BRAF positive, this means that I have a mutation in my melanoma, which means that we need to treat it differently than typical melanoma.
    The treatment is called PD-1 (programed cell death). This treatment basically activates parts of the mutated cancer cells so that my immune system will register the cancer cells as cancer cells and attack them.
    Risks of this treatment are many forms of auto immunity. I will list them below.
        If the skin is attacked (common) itching, red blotches, blisters, and sloughing of sink may occur.
        If the thyroid gland is attacked (common) I can take medicine to counter act it.
        If the gut is attacked (less common) the two results can be Crohn’s or a perforated gut.
        If the liver is attacked (less common) it can cause an autoimmune hepatitis and my blood may no longer clot.
        If the kidneys are attacked (less common) kidney failure is possible.
        If the lungs are attacked (less common) extreme asthma symptoms may occur, oxygen may be needed.
        If the pituitary gland is attacked (less common) there are vague symptoms, but will be found in blood work or lab tests.
        If the heart is attacked (rare) myocarditis may occur.
        If the nervous system is attacked (rare) Guillain-Barre syndrome may occur.
        If my body’s stress level is maxed out alopecia may occur. Alopecia is hair loss due to stress. Dr. Richart said he has never had a patient going thought this treatment experience alopecia.

I will be having treatment in an IV form every 4 weeks for 13 lunar cycles, starting Friday July 27th. It is a full day in the treatment center. I first need to have labs done, to make sure all of my levels are right, this takes about 2hrs to process. Once those results come back, and everything is right the medicine will be mixed, which takes about 1hr 30mins. During that time I am seen by Dr. Richart. After that I begin treatment which takes between 1hr to 1hr 30mins. So really, it’s going to be a long day.****

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jade1111's picture
Replies 9
Last reply 7/17/2018 - 11:15pm
Replies by: doragsda, jade1111, marta010

Hello

It has been a while since I have posted on my mom's  case. She has been in a PD1/epocadastat trial for the last 2 years. Prior to starting the trail she had 3 small brain mets treated with Gamma successfully. Overall she had done well on the trial. The removed a lymph from her groin and it was show to be necrotic and the lesion in liver which canot be biopsied is assumed to be melanoma ..has changed in intensity. Overall she has seemed stable for the lasy year/.. pretty much doing Optivo for 2 years so descion was made for her to stop the PD1. She had to do her annual Brain MRI 2 months before planned completion date with the PD1 the scan  showed something in cerebellum area.. scan was analyzed and it was beleived to be possible inflammtion related to gamma knife. They repeated the Brain MRI 2 months later and are now saying they think is a new lesion in area treated before. I am still trying to figure this part out.. as hard to read the Brain MRI reports.. and not sure what has been talked about when it went to neuro board.

Anyway my quesiton is... ok to do gamma knife 2 years post on similar area? Mom was going to stop the PD1.. but now wondering if this the best move... Also how concerned should we be about a met returning while on the PD1... everything else was looking so good... 

Any input or thoughts appreciated. Gathering my thoughts on it all and getting ready to ask these questions to her team as well.

Prayers and healing to all on here!! 

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Anonymous's picture
Anonymous
Replies 1
Last reply 7/16/2018 - 2:32am
Replies by: Anonymous

https://www.youtube.com/watch?v=SV4epXiKgrM

 

This is interesting. Dont know if you guys have notice that movie before.

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brianm's picture
Replies 1
Last reply 7/16/2018 - 8:37am
Replies by: JuTMSY4

Hi,

I've had great response to my stage 4 mel.   Al I have left is a 4cm mass in my lung and a very shallow bump on my kidney.  They did a pet scan and the 4mm mass had an SUV of 4.5.   So here is my quesiton.

 

The 4cm mass used to be over 15 cm and have an SUV of 12.5 and greater.

 

Have any of you had large tumors that melted away but left some structure?   Does it always show up as active on the pet scan?

 

I'm only 7 months into my treatment, but it saved my life....

Thx,

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Winterrothj's picture
Replies 3
Last reply 7/25/2018 - 11:39am

Well I just had surgery on the 22 June 1 spot on my middle right lung and 1 on the lower right lung it came back as melanoma cancer but have no other areas on my body that have cancer pet scans show nothing and dermatology can't find any skin cancer. Don't know what to think, never smoked or no drugs clean lifestyle.

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peterjohnk's picture
Replies 6
Last reply 7/18/2018 - 8:44pm
Replies by: peterjohnk, JuTMSY4, brianm

Brand new to the forum.  I have minor chest pain thats months old also with cold-like symtoms.  Does anybody have experience with this before they were diagnosed w/ stage 4?

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Anonymous's picture
Anonymous
Replies 3
Last reply 7/15/2018 - 4:17pm

In October of 2017, I found a lump in my groin. It was removed, biopsied and diagnosed as malignant melanoma. More extensive surgery (the groin is an awkward place to have surgery!) removed a chunk of me with nine lymph nodes and four had melanoma. But 5 were OK!! I was tested - PET, MRI. CT and physical exam. They can't find anything, so my diagnosis is "melanoma of unknown origin" which is supposedly quite rare. Anyone out there have this?

I'm being treated with nivolumab (Opdivo) -monthly infusions, and to date I am experiencing very few side effects. I did end up with mild lymphodema of the left leg, but I don't even wear a compression stocking. At the six month mark, the doctor ordered CT of chest, abdomen and pelvis and all was well.

So much is unknown. I am afraid it is elsewhere and afraid it will come back. Most of the time I go about my business and kind of forget I have this. I had breast cancer in 2000, and in 2007 I had a totally different kind of cancer in the other breast. So, this is my third cancer. Enough already! Please pray for me. I want to attend my grandsons' weddings. They are 10 and 7 years old.

Ginny Richardson

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Roxanne218's picture
Replies 23
Last reply 7/24/2018 - 2:05am

Senator John McCain was diagnosed with melanoma in his past - did you know? He had 4 of them excised, one being more serious at 2.2 mm depth. He had the SLNB for this which turned out negative. I was wondering who else here with 2.2 mm or deeper has had negative node biopsies. Mine was 2.6 mm and non-ulcerated, but I opted for no SLNB for personal and educated reasons. Curious...

Roxanne

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Anonymous's picture
Anonymous
Replies 5
Last reply 7/14/2018 - 6:33pm
Replies by: Bubbles, ed williams, jennunicorn, Anonymous

Hello. Im F 25 and I was just looking for some advice. I developed a new mark on the tip of my toe atleast a year+ ago (I cant remember when exactly I first noticed it). It didnt seem to change until I picked at it thinking it could be a pen mark and formed a wound. Since its healed it seems to have increased in size. I spoke to several derms online and visited my gp and a derm in person, all of which have said it is fine. My concern is - can Melanoma often be missed using the dermascope? I have health anxiety so have spent alot of my time reading up on acral melanoma and I know how dangerous it is. I also read that new marks, ones which had changed or those over 7mm should be excised regardless of dermascope findings. Mine is all of those. It doesnt seem to be actively changing now which brings me to my other question - would Melanoma constantly evolve? Or does it reach a point where it can extend under the skin while the surface isnt changing as much anymore. 

Thanks so much in advance. Just wanting some other perspectives as I cant always trust my own opinions due to the anxiety :( I was going to ask for it remove for peace of mind but she didn’t want to due to the location and risk of morbidity. 

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iskitwo's picture
Replies 8
Last reply 7/16/2018 - 12:58pm

I have had 2 months of Nivo and did scan last week. I got the results this week and no new mets and currents spots are almost gone!! Side affects have been very minimal so far and praying it stays that way.

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