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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registration closes in 3 weeks!  Safe From The Sun Walk/5K Run

Free Skin Screening
Health/Wellness Expo
Sunday, April 23rd  9:00am-12:00pm
Wilson Farm Park, Wayne, PA

www.safefromthesun.org

 

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Any idea for VEGFR or VEGFA blood test?

We are recomended to have these blood test for my mother who has vaginal melanoma. 

We are waiting for Foundation One biopsy results. Other tests should help for better diagnosis, please advise. 

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Meeka's picture
Replies 6
Last reply 3/31/2017 - 6:42pm
Replies by: Meeka, AliCat61, Anonymous, debwray, betsyl

waiting for follow up biopsy (of course waiting is the worst as we all know) As having had breast cancer aprox. 4 years back I find the second time around is both easier anc harder. The harder being telling my family "hey guess what its not  blackhead" I feel uncomfortable talking to them about how I feel as I dont want them to go through it again. So thank you for giving me an outlet. I guess its time to put my big irl pants on once aain and suck it up like w all do. I have 2 spots 4mm and 3mm on my face (of course  just when my son is about to be married) hat will make some nice pics lol) well thanx a ah ain for the "ear"

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J.bun's picture
Replies 16
Last reply 4/5/2017 - 3:22pm

Since melanoma has become part of my life, one of the aspects I struggle with is "sense of self/identity."  Of course I know that I am still me, but I feel different from the day-to-day... the people I encounter, my work colleagues, my friends, etc. I am sure this is true at any age... but being in my early 30s, my reality is something that makes most people cringe and uncomfortable  - and I know it.

Perhaps part of this is because I have intentionally limited the number of people who know my true diagnosis - and therefore I feel like there is a secret.  And perhaps part of this is because - despite other tear-jerking hardships I've experienced, there is nothing like this happening at your own, individual-level.

And, perhaps the greatest element is that is has legitimately changed aspects of my day-to-day... going to doctors appts, taking medication, getting blood work, experiencing and recovering from side effects.  Yet, I am thankful that there is treatment available, am otherwise healthy, have a caring & supportive network, and remain steadfast in overcoming melanoma and living my life...

It is likely there are others here that feel similarly, and am comforted that none of us are alone.

- J.

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Anonymous's picture
Anonymous
Replies 14
Last reply 5/12/2017 - 10:14pm

Just out of curiousity, how many of us are MDA patients? I live in Texas but travel about 4 hours to get there if driving (or 30 minutes by air) but I know people come from all over the country (and world). Each time I'm there I meet really interesting and positive people so I was wondering how many of you go there?

Tex

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wildpoppy's picture
Replies 19
Last reply 4/6/2017 - 8:55pm

Hello and thank you for reading

4 days ago I found some blood whilst wiping after a pee... Only a thumbnail's worth. As I was on my way to work and late, I had a quick look, thought I saw a kind of soft bump and red pin prick.

Later that day (under self investigation!) I couldn't really find what I had seen earlier that day, the pimple thing. However, I did find a patch of 'pigmentation' /mole/freckle thing on the inner crease of my labia (minor) Sorry if this is too much info...but I am so scared :-(

So, this 'freckle' is about 3mm irregular looking, kind of banana shaped maybe? but not clear enough for me to see... doesn't seem raised at all... no evidence of bleeding either.

Kind of grey/blackish looking. Diificult to see in mirror myself. I have a couple of grey patch markings also on the opposite side that are not so dark.

I made an appointment to see docs. I went today, and she is referring me immediately. I am in UK, and they have fast forwarded me to specialist under suspected vulvar melanoma :-(((

I have been reading up on it all, trying to be 'sensible'... But the prognosis for these things looks grim. There is limited information available, and what I CAN find, ugh... It doesn't look good....Mucosal melanoma has a poor prognosis? 

I am 44, one 10 year old boy who is my life, and I cant stop worrying. I have had many heath complaints in last few years (Celiac, Graves) and I guess the last few years have been tough.

If anyone has any advice, or knows anything that might help... Sincerely would appreciate :-( Thank you

 

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RitysMom's picture
Replies 8
Last reply 3/31/2017 - 12:19am

I am with my daughter and son-in-law in Houston. She had her first appointment on Monday with Dr. Tawbi. He was wonderful, very thorough, and answered most questions before they were even asked. He suggested two options for Kristine: a) join a clinical trial at MDA; b) begin ipi/nivo at home (Alabama). His preference was the clinical trial due to the toxicity of ipi/nivo, but knows it would be quite an inconvenience to come to Houston every three weeks. Before any decision can be made, however, he wanted to see what's going on in her brain. She had an MRI yesterday, and we meet with him today for the results. One question we didn't ask and he didn't clarify is what would happen if brain mets have returned. Does that limit her options?

Thank you,

Cindy

Cindy 

Mom of the beautiful Kristine

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Anonymous's picture
Anonymous
Replies 5
Last reply 3/30/2017 - 11:57am
Replies by: youngann, Anonymous, jennunicorn, Nanners10

I apologize if this is inappropriate to ask, but I am curious to know what people are typically being charged for ipilimumab treatments. I was told it would be 30,000.00 per treatment. Imagine my dismay when the bill arrived and the charge for two treatments- just for the ipi- was 353,958.88!  Can this possibly be correct? 

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Anonymous's picture
Anonymous
Replies 3
Last reply 3/30/2017 - 12:01pm
Replies by: debwray, UBContributor, Anonymous

Wondering the thoughts of so many helpful people on this forum. Tumor size significantly went down after first set of scans while on Opdivo. Second set shows tumor at the same size but SUV dropped about 10 points (to a 5). Third set shows tumor at same size but around 2 max SUV. 

 

Is is it possible tumor is officially dead and it is necrotic or scar tissue? Or would the tumor have to keep shrinking down to almost nothing?

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mrsaxde's picture
Replies 7
Last reply 3/30/2017 - 6:46pm

Hi Everybody!

If you saw my last post, you saw that my recent PET scan revealed that the spots on my skin and lung nodules in my right lung did not light up at all. But what did light up was a spot on the hilum of my lung, the precarinal lymph node that is nearby, and other lymph nodes in my chest. All other organs are clear. I was devastated. I have been receiving Keytruda since July 2015 and I thought I was on the path to being disease free. After hearing the results of the scan I began to think that things were no longer going my way.

Then, yesterday, I met with the pulmonologist my oncologist referred me to for a biopsy of the spot on my hilum and the lymph node. During my conversation with him he mentioned he had recently done the procedure on a woman who had melanoma. Then he told me this: "It turned out she didn't have melanoma. The biopsy revealed it was sarcoidosis.

When we got in the car I said to my wife, who is a registered nurse, "I've heard of sarcoidosis, but I don't know exactly what it is." She responded, "It's an autoimmune disease."

My ears immediately went up, knowing that Keytruda can sometimes cause autoimmune disease. Last night I Googled the words "Keytruda and sarcoidosis." Low and behold, I found two articles that mentioned recent cases of sarcoidosis have been identified in patients receiving PD1 checkpoint inhibitors. One patient was getting Keytruda, the other was receiving the ipi/nivo combo. I also found a medical journal article that said sarcoidosis can mimic lymphoma on PET scans.

So my biopsy is a week from tomorrow (Thursday). I'm trying not to get too optimistic because the letdown would be pretty bad. But now at least I know that whatever is going on isn't 100% guaranteed to be more cancer.

--Bill

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Anonymous's picture
Anonymous
Replies 3
Last reply 3/30/2017 - 10:42am
Replies by: UBContributor, Anonymous

For those of you who've found a lump in your groin, did it just appear over night or did it start out with pain and tenderness?  My stage 1 was found on my upper left arm last year. Clear margins all good supposedly but yesterday morning I woke up with a soreness and tenderness right at the top of my pantyline. Not low in the groin but at the top on the same side where the melanoma was. Just wondering. Thanks

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iskitwo's picture
Replies 4
Last reply 3/30/2017 - 12:29pm
Replies by: iskitwo, Anonymous

I was diagnosis with stage 3 in Oct 2016 I opted for scans and close watch. I had my first set of scan at MD Anderson in which they did CT and Brain MRI. I am transitioning to a melanoma specialist closer to home for follow up scan and they are suggesting CT only every 3 months. They said that insurance will usually not pay for brain MRI unless you are having headaches.  I am just wondering what some of the others that are stage 3 are doing as far as follow up scans?

Missy

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VIve's picture
Replies 10
Last reply 4/3/2017 - 1:57pm
Replies by: VIve, Anonymous, cancersnewnormal

Hello everybody,

I'm neely diagnosed with metastatic melanoma stage IV, spread in the liver. Since a month I'm on debrafenib/MEK (300/2 mg per  day). Feel good for now. I was told in the hospital that while on this chemo therapy I cannot have a surgery. Does snybody know if this is true? Because I'm not sure if I have to remove my ovaries.  The CT statement says melanoma or ovarian cystuadenocarcinoma.

I haven't been very often in this forum but some comments encouraged me a lot. 

Many thanks!

Victoria

 

 

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Anonymous's picture
Anonymous
Replies 8
Last reply 3/31/2017 - 4:39pm
Replies by: Anonymous, Rocco, Nicklindner

Has anyone experienced calf pain and swelling while in ipilimumab? Also redness and pain in eyes?

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ajpeterson's picture
Replies 4
Last reply 3/29/2017 - 11:38pm
Replies by: ajpeterson, debwray, eric w, Anonymous

After being diagnosed with melanoma in my lymph node 3 weeks ago, I am going in to have my initial meeting with an oncologist/surgeon who specializes in melanoma.  My meeting is this Friday (10/31), and I'm assuming that we will talk about a lymph node dissection, and then treatment options following the surgery?  

Ive been reading different posts about various types of treatment, and wondered if you all have any sage advice for me?  Any questions (aside from the set questions that are on melanoma.org) that you think I should ask?  Any types of therapy I should avoid, or be careful of?  

Thanks in advance! 

Amy

 

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