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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scots's picture
Replies 5
Last reply 1/6/2016 - 10:13pm
Replies by: BrianP, scots, kpcollins31

I have an appointment next week at Duke. I wondering if anyone had been treated there and what there experience was. In Sept. a CT showed numerous liver mets. After 3 doses of ippi and opdivo a  2nd CT showed the cancer still growing and spreading so I!m off to Duke for consult. 

Thanks

Scot

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Anonymous's picture
Anonymous
Replies 5
Last reply 1/6/2016 - 6:37pm
Replies by: Anonymous, Scooby123, Mat

I have liver mets and am on Keytruda for five months now.

My blood work for liver and LDH etc is normal but just lately i have noticed my liver is tender in the mornings and i can sort of feel activity going on there. Sometimes i feel a sharp twinge as well.

Is this consistent with worsening liver disease? What can i expect if things get worse?

Are their any treatment possibilites. I am due for a PET scan next month but already feel like things are spiralling out of control.

 

 

 

 

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LibbyinVA's picture
Replies 6
Last reply 1/6/2016 - 12:57pm

Just wanted to share some good news from an "old timer" here on MPIP. I am a stage IIIb warrior and right before Christmas I had a clean PET scan. I will be NED for 10-years this June and cannot wait to celebrate. I sincerely hope my story inspires anyone who is feeling down to keep fighting. When first diagnosed, my prognosis was very grim and here I am almost 10-years later and still a member of the "NED Club." So stay hopeful and let me know if you need help!

Libby

I have melanoma but melanoma does not have me!

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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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Anonymous's picture
Replies 18
Last reply 1/5/2016 - 5:27pm

I just got my pathology report and after cruising this board, I guess it doesn't look too good. Any help or advice would be greatly appreciated.
Superficial spreading amelanotic, Anatomical level : at least iv, greatest thickness at least 2. 9 mm, ulceration present, radial growth phase present, vertical growth phase present epithelioid, spindled, margins extending to the lateral and deep tissue edges , mitosis 16 per sq mm , tumor infiltrating lymphocytes present , non brisk.
But at least there were no micro satellites, lol
Trying to stay positive waiting for the surgeon to call for my appointment . Please help me decipher this

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Empire's picture
Replies 10
Last reply 1/5/2016 - 2:33pm
Replies by: Anonymous, Janner, Empire, stars, Azcaddyman

I received a diagnosis of melanoma last week and have been lurking since. I was told it was a 0.8 mm superficial spreading and they were sending me to a surgical oncologist.

I was too shocked to ask questions because I honestly didn't expect the biopsy to be anything other than an atypical mole.  Right now I'm waiting for the surgeon's office to call me about a wide margin excision and a SNLB. 

I did get a copy of the pathology report and now I'm even more confused. It looks like it's not 0.8 mm, but at least 0.8 mm. How concerned should I be or this just a random atypical thing that happens in thin to moderate melanoma?

MELANOMA; EXTENDING TO THE SIDE AND DEEP TISSUE EDGES.

Type: Superficial spreading
Tumor (Breslow) thickness (mm): 0.8, at least
Anatomic level of invasion (Clark level): III, at least
Ulceration: Absent
Dermal mitotic rate (mitoses/mm2): 2
Microsatellitosis: Not identified
Vertical growth phase: Present
Regression: Not identified
Angiolymphatic invasion: Not identified
Neurotropism: Not identified
Tumor infiltrating lymphocytes: Non-brisk
Precursor lesion: Nevus
Pathologic stage: pT1b.

Comment: This is a difficult case with borderline features. Sections
show a proliferation of atypical melanocytes in the epidermis and
dermis. The junctional component is disposed in a confluent fashion
with adnexal extension. The dermal component is present in aggregates
with variable maturation. Nests of bland nevoid melanocytes are also
present, consistent with a component of nevus. As these are
intermingled with dermal melanoma cells, depth of invasion is difficult
to precisely assess in this specimen.

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yunielth's picture
Replies 2
Last reply 1/5/2016 - 11:34am
Replies by: yunielth, Janner

Hello!!!

My sister was diagnosed in November 2014 of Melanoma, Stage 1a, Breslow 0.6mm mitosis <1, Clark III, the primary was on her middle left clavicle. Since then everything seems to be ok, she have been going to her 6 months dermatologist appointments and all fine.

About a month ago she started with a discomfort on her right knee. She went to the Doctor, he made an ultrasound and diagnosed her synovitis, also made her a MRI on her knee.

The first radiologist said was a fissure on the knee, but later was checked by the head of radiologists and for him was unclear, he saw a dark shadow he never has seen before on that place.

Today my sister went to the doctor office and he told her she need to go to a Hematology Oncology Specialist by order of the Radiologist. By the way we have an autoimmune disease called spherocytosis, but we've always been ok. Previously the doctor did some blood test to my sister more than once and everthing was ok.
Could this be related to melanoma?
I am very worried about my sister, I am afraid this could be related to melanoma. My sister tells me that she has not longer any pain on her knee.
Any advice?
Thank you very much to all and Happy New Year to all.

Yuni

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jenny22's picture
Replies 3
Last reply 1/5/2016 - 11:17am
Replies by: LibbyinVA, jenny22

Hi all-

In an effort to remain hopeful i know many of  rely on this site for good news and long term survivor stories....

I was readiing about LibbyinVa, who appeared to be one of these, with 7 years NED at Stage IIIB....I sent her a message and have not received any repsonse....and the last post from her was in Sept. 2014.

I am hoping she is out living her life, but wondered if anyone had heard from her.....

LIBBYINVA, if you are out there, let us know you are OK.  Would love to communicate with you.

 

Thanks and best,

jenny

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Cinthia16's picture
Replies 4
Last reply 1/5/2016 - 12:59am
Replies by: Anonymous, AshleyS, Donnasue0611

Hi my name is cinthia 

I got diagnosed with melanoma 3 weeks 

Ago am 7 months pregnant, even tho the doctor said it was caugth on time im so scared that it has spread i dont want to leave my daugthers alone. The doctor told me i have to do check ups every 3 months for 2 years 

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ETF111's picture
Replies 44
Last reply 1/4/2016 - 10:40pm

 

I am the 55 year proud father of two 38 day old twins (yes 38 DAYS old) and belive it or not, my first, but who is now so scared they will never know me. A few weeks ago, I got a spot on my lung detected in a routine Xray but a clean blood work run. A knot on my groin prompted a PET scan that showed "uptake" at two spots : my groin and one on my lung (there were two actually two spots or places in my lung but only one had "uptake"). They did an aspiration on my groin node last Thursday and got an oral report that it was melanoma while I was still on the table––. Having to wait for my doctors to say exactly what it is and stage, but everything I read says it will not only come back melanoma but Stage IV (because of nodes in two places  - no matter size or number of them) and my future is bleak. I've had no signs of symptoms other than a persistent cough for the last 3 months if I laugh hard. No night sweats, fatgue (still swim a half mile almost every other day) and no rapid weight loss (although, I will admit, since this news last week, I've lost 5 pounds but I hope it is due to stress - quite the appetite supressant ... as well as this eye sty I just got today).

I'm the typical fair skinned, bue eyed countless sunburned Florida kid all grown up. I survived Hodgkins 11 years ago (almost exactly 11 years ago) with chemo and radiation and never expected THIS news. I've had several melanomas on the skin but they always said they got them all and they weren't deep.

 

Anyone else have something like it and is my death as imminent as the studies say?

 

For the first time in my life I feel I've never had more to live for and never been so unsure of the future.

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I just read the Wikipedia page about melanoma and I think that the therapy section should be updated. There is far too little information about the new excellent drugs, on the contrary a big part is about chemotherapy.

Would some knowledgeable person be interested in updating the page? Maybe Bubbles? I don't have enough overview to do it. If someone could write a text, I could put it on Wikipedia with my user there.
Thanks!

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Anonymous's picture
Anonymous
Replies 9
Last reply 1/4/2016 - 4:53pm
Replies by: mkirkland, Scooby123, AshleyS, gregor913, jennunicorn, Anonymous

I had my first infusion of ippi monday. My daughter was sick with a fever that week also. By friday night I started feeling ill. (99 degree ) By saturday morning 130am I woke up with a 101.5 fever with chills and sore throat. I do have alot of congestion too. Ive been taking ibuprofen where it will lower the fever then the fever will go back up. This morning I also noticed that the right side of my neck is a lil tender and slightly swollen. ( no bumps or hard lumps) I had a left axillary lymph node disection dec 1st. All 11 nodes negative. Any insight on ippi treatment will be grateful.

Greg

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Anonymous's picture
Anonymous
Replies 6
Last reply 1/4/2016 - 1:06pm
Replies by: Lil0909, Anonymous, mjanssentx, Cee, Becky

I have read a lot of people are against in and saying people are a fool to do the treatment 

 

I was given 3 options 

wait and watch 

interferon

yervoy

 

i had choosen interferon because I don't want the long term effect damage from yervoy like liver damage tyroid problem etc etc..  

 

I am am just wondering for those that was on interferon treatment what side effect was the most problem and did you really loose a lot of hair?   What is the best advice to get through the hard treatment, what help keep you immune system up etc..   Please don't call me a fool I am just asking for some advice and hear from other that was on it.... All that matter is we are all fighting in the battle and asking for the same support,,, 

 

thank you and my thoughts are with all of you 

Melissa 

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chrisholder's picture
Replies 4
Last reply 1/4/2016 - 8:30am
Replies by: chrisholder, tbh1835, jyc

I've posted a few times, but many may not remember... Diagnosed with mm in right max. sinus in May of this year, started ipi/nivo course in June but knocked out of trial after two infusions with hepatitis, blown thyroid and long hospitalization.  Once recovered from side effects started Pembrolizumab (Keytruda) in Sept which has kept tumor confined to sinus - and no mets so far.  But since the tumor is still growing I will start aggressive radiation next week for 7 weeks while continuing Pembro to retain its benefits and to possibly gain the Rad-Vax effect (synergistic effect of dying cells being transformed by Pembro into a 'vaccine' against further cancer cell growth).  Likely will lose the sight in one eye where the tumor is encroaching, but hopefully will drastically reduce tumor size.  As many of you more experienced than I know, the side effects of the radiation will be very difficult and some likely permanent.  Would be grateful to hear from face/sinus radiation veterans about how you dealt with sores/burning/loss of salivary/loss of appetite, etc.  Thanks!  Will update as I can.  Chris

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specka's picture
Replies 3
Last reply 1/4/2016 - 1:14am
Replies by: specka, AshleyS

Is it more likely to see overall progress while on keytruda or its it likely to see progress in one area and less progress in another?

The reason I ask.. My husband had a few bumps show up that were confirmed melanoma. The last ct and MRI showed Mets in the lungs, spleen and liver. He started Keytruda a little before the ct and mri but there was a months lapse between ippy and keytruda.

The bumps are gone. But I don't want to get my hopes up too much. I want to know if that's a good sign. If it's likely that bc we can see progress, that his internals are responding too.

Rebekah

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