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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jennunicorn's picture
Replies 11
Last reply 7/10/2017 - 4:27pm

This is probably nothing more than normal weird body stuff... but since I finished my infusion this morning, my left hand index finger has been twitching. I feel it into my hand and it forcefully moves the finger to the side. Been 7 hours of this, pretty annoyed with it now. My arm has had some muscle twitching too, but not as much. Have a bad muscle pain on the left side of my back since last night and left side of neck too, not sure if it's related to the twitching, I may have just slept funny. Just curious if anyone else has experienced this?

Also got an email from my doc that my TSH level was higher than normal range today, compared to the past few times, it's tripled. Hoping it's a fluke, but I may be joining the hyperthyroidism club.

 

Jenn - stage IV - Ipi/Nivo (Yervoy/Opdivo); now on Nivo maintenance

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mrsaxde's picture
Replies 3
Last reply 7/8/2017 - 8:51pm
Replies by: mrsaxde, Linny, betsyl

Hello Everybody,

I had my second infusion in the anti-LAG3 trial at Johns Hopkins on Wednesday. I don't really have anything to report. I seem to be tolerating the combination of the experimental treatment and Opdivo very well, with no noticeable side effects so far. My blood work is all good and the only side effect we have seen appears to be a very mild rash on my upper chest and back.

Another patient was apparently not so lucky with her treatment. During my first treatment the research nurse mentioned that another patient who was also starting the trial was experiencing a range of side effects. On Wednesday there was a woman behind me who my wife believed was probably the patient who had had problems last time. I wasn't paying much attention because my back was to her, but my wife was facing in that direction, and she said the woman never made it to the experimental medication. They give you an infusion of Opdivo first, then the new drug after a 30 minute break. Apparently this woman had an allergic reaction to the Opdivo, which they were fortunately able to quickly control.

My next infusion is on the 18th. The first scans come on August 11. If anything changes I'll update. Otherwise I'll have another report after the 18th.

-Bill

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Ingekk's picture
Replies 7
Last reply 7/20/2017 - 8:48pm

Hi, I am 40 years old and live with my family in Norway. I found out in May that may melanoma from 15 years ago has come back. I have one large lymph on on my neck under my ear that is almost 3x3 cm large. PET scan shows no other activity. I am going to have a lymph gland removal on Wednesday. They are removing all lymph nodes, The muscle Sternokleido Mastroideus and everything else in the area. After this I am supposed to have radiation therapy for 6 weeks.
Is this the way to go? I asked about this new therapies, but they told me that it is not for me as it has not spread further?
I am really scared right now and crossing my finger that this surgery will make me NED.

Inge Kristian

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Cindyco's picture
Replies 17
Last reply 8/9/2017 - 6:15pm

My mom starts her clinical trial today and receives her first infusion of IMCGP100!  She will be getting this weekly, with an additional dose of Durvalumab every 3 weeks.  

Praying that this will be a promising treatment for her without much toxicity!  We're not sure why, but her liver numbers have been elevated lately.  This worries us, because she's had to stop treatment before for hepatitis (both on ipi/nivo and pembro).  We've been careful and not taking any supplements or anything herbal, so we're not sure what the cause is.  Maybe a continuing flare or reaction to last week's liver biopsy?

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Jubes's picture
Replies 11
Last reply 7/8/2017 - 9:56am

Hi all. 

My pet scan on Tuesday shows new uptake in media Steinem. SUV 13.5 neck and on my liver. The report says that inflammation can't be discounted due to my previous severe muscular inflammation. However that inflammation has practically disappeared since I've been on sulfazalazine. So my gut feeling is that the melanoma is back. 

Oncologist suggests trying to biopsy the spots with a respiratory doctor or a vats surgeon so we know what we're dealing with. My husband just wants me to go straight onto pembro or nivo/ipi. 

I am feeling well. I seem to always feel better when the Mel is growing and worse when on pembro!

what would you do? Are there any other options or trials?

i did pembro for 9 months in 2014/15. Lower right lobe resection nov 2016. And I'm braf negative

any advice much appreciated

 

anne-Louise 

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sgreenberg's picture
Replies 1
Last reply 7/6/2017 - 9:22am
Replies by: marta010

https://www.nature.com/nature/journal/vaop/ncurrent/full/nature22991.html

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4121338/

How can I locate the trial assocaited with this research, and find the criteria for acceptance?

Many thanks,

Steven

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JaiLee's picture
Replies 2
Last reply 7/6/2017 - 8:38pm

Hello,
Been lurking here since Jan. But I have been lurking so long I realized that I can actually maybe help answer some questions too, so decided to join :(
Diagnosed with stage 3 in Jan. had WLE and SN removal as well as groin lymphs removed. Pet scan clear. Started the Ipi / pembro trial and had one infusion. Unfortunately I got on the ipi, and in the trial the dose is even higher than if we weren't. The "regular" dose would be 10mg, and the trial dose is 11. And yes obviously the side effects have the potential to be worse too.

I was wondering if everyone who had their thyroid, adrenals or pituitary gland killed by ipi, does it come back? Or arre you on medication forever?

My worst side effects are excessive sweating, chills, random sharp joint pains (not in previously injured areas), weird very painful "fireworks" for lack of a better term, going off in my leg, neck feels fat and shoulders hurt, headaches, but the worst is a strange lower left back pain, like around my upper hip area.

Not looking forward to round 2 :(

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Mandy38654's picture
Replies 8
Last reply 7/11/2017 - 1:37pm

I was diagnosed in July of 2014 with Stage 2 nodular mm after having an atypical growth removed from my lower left leg. Initially my derm thought it was an ulcerated wart but it turned out otherwise. I had a surgery and was left with a 6" scar and also had two lymph nodes in my groin removed. Neither lymph node was positive after removal. Since then I have had regular checks and several moles removed but no reoccurrences. Last week while rubbing my hand across my leg and incision I felt a small pea shaped hardish knot under my skin almost near the end of my incision about an inch from my original tumor. At first I thought it was new scar tissue that had formed but knew it was odd that nearly three years to the date scar tissue would just pop up. I am very certain this has not been there long as I check my incision very frequently. I contacted my surgeon and was told to see my oncologist asap. My oncologist can't see me for a few weeks so I am going to my derm next week for a biopsy. My derm said that she would not be able to do a needle aspiration biopsy and would cut to do it. I also noticed last night I have two swollen lymph nodes on the back of my neck on the same side. 

I have searched and find some stuff but not much on the possible reoccurrence of it being back subq or appearing under my skin. It isn't blue or dark on the surface by my original mm wasn't either. It was flesh colored which baffles my drs.   My head is spinning. I M 40 years old, a single mom of a 7 yo and 3 yo and I would like to hear if others have experienced this and the real raw outcome. Just put it out there. 

Thanks! 

Mandy 

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Miss_yqm's picture
Replies 2
Last reply 7/5/2017 - 7:40pm
Replies by: Miss_yqm, Anonymous

I am new here. I had a suspiscious looking mole on my left calf checked out by several general physicians and nurses who all thought it was nothing.

I got a new family doctor and insisted on getting a referral for a dermatologist. My dermatologist recommeded a biopsy, but she was convinced it was nothing and did it so I would have peace of mind (I'm a hypohondriac). My biopsy took place on March 31st, and I was notified on May 1st that it had come back for melanoma in situ. I had my WLE done a week later with 5mm margins, which I had told her she can cut up as much as she wants to make sure this thing was out!! I requested my path reports after, and my biopsy path report said it was "at least melanoma in situ, with features suspicious of early papillary dermal invasion (Breslow thickness 0.28mm, Clark II)." Huh. Ok. Clark II means stage 1a not in situ... I then reviewed my WLE path report which says "The previous biopsy was reviewed, rare cells suspicious for papillary dermis invasion were confirmed, similar cells are not seen in the current wide excision specimen. Opinion: Focal residual melanoma in situ, negative for dermal invasion in this sample; in situ melanoma is 4 milimeters from closest lateral margin."

So turns out I am stage 1a, not 0 as my dermatologist initially thought.

My dermatologist called 6 weeks post WLE to prescribe me Zyclara (imiquimod) two applications per day for 6 consecutive weeks in case there were any melanoma cells left, she said this would kill them. She has dismissed any concerns I had when I questioned the effectiveness of Zyclara on melanoma. When she did my skin check, she glanced at moles from afar and dismissed my concerns for a similar one on my back. I feel very anxious and scared.

A new dermatologist has reluctantly accepted me as a patient, and although she agrees the guideline margins for stage 1a are not met, she does not feel comfortable re excising it herself and would like me to go to my old dermatologist who I think will refuse to do it. Zyclara has had no effect on my skin/scar, which my old dermatologist said is good because since there is no reaction that means there is likely no cancer cells left.

What would you do? I worry a lot, and tend to come to these forums often. I want to move on and live my life but am terrified I will be part of the 5% 1a who die after 5 years if I don't get re-excised.

Thanks to all for reading.

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Anonymous's picture
Anonymous
Replies 3
Last reply 7/5/2017 - 9:04pm
Replies by: JaiLee, Anonymous, jennunicorn

Hi All,

I had a WLE on my chest about 2 months ago.  The scar is healing relatively well but the skin is still super tight, particuarly when I move my head or shoulders at the same time.  I must have moved just right this weekend and reopened a small section of the scar.

I'm going to see my surgical oncologist this Friday, but was curious to hear from anyone who had a WLE w/o doing a skin graft...

How long did it take to regain some elasticity?  Or will it always be pretty tight?

I'm using copious amounts of Maderma 2-3x daily...

Any other good recommendations?

Thanks all!
Aaron

 

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Ladybabineau's picture
Replies 8
Last reply 7/5/2017 - 11:33pm

Hi all

I'm new here but here is my story.....

I am a 37 year old mom of a handsome 4 year old and a beautiful 7 year old. About three years ago I noticed what looked like a bug bite on top of my hand. It didn't hurt or look weird and I honestly thought I got bit by something. Having an infant and 3 year old life was busy. I forgot about it. The Summer of 2016 I kind of noticed it again. It looked the sam but I thought I should just get the "ganglion cyst" drained. It looked like a tiny cyst so maybe I had a splinter or something. Fast forward to November 2016. I would k in Ortho and talked to 2 hand surgeon friends. They both said it was most likely an inclusion cyst. In March 2017 I started to get bigger and was getting red. I went to Derm who told me it was nothing and a hand surgeon who did MRI and said he had no idea. I convinced him to take this small mass out. 3 weeks later May 2017 I received a call telling me I had cancer. I'm was either Melanoma or Clear cell sarcoma. May sucked!! I had PET scans, MRI, WLE on top of my hand( my hand is very tight now). I also had SLNB (8 nodes removed under arm). I'm about to start clinical trial Ipi. Vs Pembro. 

I am scared beyond belief and any support appreciated! I need some hope. They just keep saying it was so deep. Although it was not ulcerated which I hear is good?

 This is just shocking still... I have guilt I should have gone sooner to doctors but again even the dermatologist I saw at Dana Farber said he would have thought nothing if that was on his hand.

I feel like I'm losing in a world where Everyone is moving forward and I'm stuck in a bad dream. I will do whatever to be here for my babies! Help I'm a mess emotionally.

Tania

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Anonymous's picture
Anonymous
Replies 4
Last reply 7/8/2017 - 12:35am
Replies by: Anonymous, Cindyco, adrianc

Greetings-

My mother was diagnosed with rectal mucosal melanoma in March of this year. We are looking for a survivor for her to connect with by phone or email to talk about their experience but this rare and aggressive cancer has made it difficult to find any current local patients. If anyone has been treated for MM, and would be willing to speak with her, we would be so very grateful.

Thank you.

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Anonymous's picture
Replies 9
Last reply 7/7/2017 - 8:46am
Replies by: Bubbles, Ed Williams, Fen, jennunicorn, kris1, Nemesis, Patrisa, Anonymous

If you have been on Yervoy or Keytruda, would you personally do it again if you were at the age of 79?  I am otherwise healthy and stage 3 head and neck melanoma (1 positive node) which appears to be have a worse prognosis than regular melanoma.  Appreciate your responses.

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cammeronwall's picture
Replies 6
Last reply 7/6/2017 - 10:20pm

Hi all, I'm 4 days post SLNB and WLE. The pain is unreal. Maybe I have a low tolerance since it goes from the corner of my right eye to my ear then down toward my neck. Anywho, radiology said two nodes lit up after the dye was injected pre- op, and the oncologist surgeon said if they were in a linear chain he would only take one... after surgery he spoke with my parents and husband and confirmed he took just the one. My appointment to find out results of the SLNB is the 14 th of this month. Just curious why only one node was removed... 

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adriana cooper's picture
Replies 20
Last reply 7/7/2017 - 5:24pm

Last night at about 8 PM my best friend, my wife, my world, left all of the pain, the medicine and all of the other nonsense in this earth behind. She was in the comfort of my arms around her, (her comforting me,) with our family at our side. Although, the fighter that Adriana is, it did not seem easy for her, I hope that I was able to keep any pain and discomfort in check for her and that she was only able to feel the immense love that I have for her.

I would like to thank the many people on here (Celeste, Maria, Samantha Stamps, Glen and Loretta Vangampler (Artie's parents), Connie and the many numerous others) as well as friends on other melanoma websites over they years for the support and guidance that you have provided us. It has been my pleasure and honor to care for and share the largest part of my life over too short of a time.

Live your lives to the fullest and don't take it for granted no matter what stage you are in. Educate yourselves and others so that you may survive this horrible disease. And may the researchers  please double their efforts to find a cure, and compassion for those that need a chance at the various trials when they have no other choice, everything to gain and nothing to loose.
Along with her son, brother and father that have gone before Adriana, may those that have left this world due to this disease before her welcome her and comfort her with their arms around her and guide her down the path to eternal happiness.

Adriana, I have a hole in my heart and emptiness in my life without you. I love you.

Best Wishes and Thanks to All
Rob Murphy- Best Friend and Husband to Adriana Cooper

https://www.melanoma.org/find-support/patient-community/patient-stories/...

Adriana

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