MPIP: Melanoma Patients Information Page

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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.

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Who is The Love is Medicine Project for?

If you have endured trauma in your childhood…
If you have suffered loss of a spouse, partner or parent…
If you lack the confidence to go after your dreams…
If you live with chronic pain or illness…
If you struggle with making positive lifestyle changes such as quitting sugar or smoking…
If you can’t seem to keep a fitness habit…
If you seem stuck in bad relationship patterns…
If you struggle to maintain a healthy weight…
If you all too often ignore your inner voice…
Then this documentary series is for you!

Started TODAY https://loveismedicineproject.com/

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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I was diagnosed with stage one amelanotic melanoma in March of 2018. Since then, I have had 102 biopsies. The results of those biopsies range from normal to stage one melanoma. Very few of the biopsies have been normal moles. Most are either moderately/severely dypslastic and two have actually been melanoma's. All of the biopsies have been on tiny red spots that do not fit the typical profile of a melanoma mole. In fact, every dermatologist I have visited have made the statement that they would not have removed any of these spots because they do not look suspicious and they do not fit typical profile of a melanoma. These spots are all over my body. They call it eruptive melanocytic nevi of the skin. I have been a patient at MD Anderson since June of 2018. Each time I go to MD Anderson they advise me that they have never seen a case like mine before. They have no idea what is causing the eruption of melanocytic nevi's therefore, they have no idea how to treat it. They have presented my case to many conferences at MD Anderson but the response is always the same. . I absolutely love MD Anderson. They have been so good to me. However, I know I cannot be the only person who has ever experienced this. I am looking for a second opinion. Do you have any recommendations of other research hospitals that specialize in this type of melanoma?

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greenducky's picture
Replies 2
Last reply 9/18/2019 - 12:13am
Replies by: casagrayson, Gene_S

Obligatory new to the forum, here's my backstory. I had a dark, flat mole on my R upper back. I didn't notice changes because of location, but 3 years ago my husband said I should get it looked at. Well, I wasn't worried, we had a pretty big vacation coming up and I put it off. About 6 months after he first mentioned it I went to a dermatologist. The PA said she wasn't concerned, but did a shave just to be sure. Two weeks later I got a call while I was at work and I went ahead and answered it because I was sure they'd tell me it was benign, no big deal, move on with my day. Turns out it was melanoma--obviously, since I'm here. They got me in right away and did an in office removal. Caught it early (stage 1, not sure about anything else), margins clear, no need to biopsy lymph nodes. It healed very nicely and the scar is barely noticeable. I'm down to going every 6 months for either a full body or upper body exam, it alternates. Here's my current issue. For 3 months, my left ovary has been hurting. Sometimes intense pain, sometimes it's just noticeable but doesn't really bother me. I can't tie it to any menstrual symptoms. I feel it almost every day, but some days if I'm really busy I don't notice it, and probably 3-5 days a week are pretty painful. There's also bloating, feeling full, heartburn/indigestion, but those aren't daily. Loss of appetite but I think that's stress. After a month I went to my GYN, she did a pelvic and thought she felt something, but 'the good news is it's soft, not hard'. US was negative and she recommended a laparoscopy. I asked if we could do a CT first because I'm scared of general anesthesia and a part of me thinks that I'm silly so I shouldn't have surgery for nothing. CT was negative. I decided to wait another month since I had a physical scheduled with my PCP and get his opinion. Work has been stressful and short staffed, so I thought it was just showing up as pain in my lower left abdomen in a very specific spot. He said that doesn't happen, get the procedure. So I'm scheduled next Tuesday, 9/24, for a diagnostic laparoscopy. Of course I've been all over the internet and my symptoms most closely line up with ovarian cancer. Oh yeah, my periods are lighter than they used to be just in this time period, and last about 48 hours which is half of what they were. Anyway I'm scared because I've never had general anesthesia and there is a chance that I won't wake up. Or that it will be ovarian cancer and I'll wake up to having my insides gone. And what kind of problems that could lead to. I'm a mess...my friends keep telling me that it's probably nothing, but they can't know that. My mom and my husband think it's not normal to have the pain but don't know what it could be--or they're not telling me they think it's cancer too. I've looked at symptoms, statistics, chances of a CT missing cancer--turns out less than half a cm goes unnoticed. Basically I have support but they're all positive, which is great. But the reality is it could be very bad. Or my anxiety wins this round and my new normal is pain. This is longer than I intended, if you made it thank you for reading. I don't even know what I'm looking for. I just want to tell someone that I'm scared. My mind makes it hard. But I'm probably fine.

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RachMM's picture
Replies 4
Last reply 9/16/2019 - 9:26pm

I went to the dermatologist last week because I developed a lot of new moles during pregnancy. We ended up doing a biopsy on one. I got the results back this week (the dr was on vacation so I received the results via a phone call)—melanoma in Situ (although I’ve been reading that it’s not possible to determine the stage without further testing??) . I’ve been in a panic ever since. My original dermatologist recommended excision along with doing biopsies on several other moles that we were going to watch originally. However, I live in Houston and was able to secure an appointment at the md Anderson melanoma center in another week and a half. The wait is killing me and I don’t know where to turn. I’m mostly concerned that one of my other moles is at a more advanced stage. Sorry to be rambling...I would really appreciate any advice or input...I’m having a hard time navigating so much scary information along with my emotions.

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AshleyS's picture
Replies 5
Last reply 9/16/2019 - 7:50am

Hey y’all,

I don’t post too often anymore, but I just read Celeste’s charge to post good stories. Here’s mine....

The quick rundown: I was Stage 1 in 2013. While I was pregnant, it came back. Multiple lymph nodes tested positive for melanoma but I refused to have scans with radiation during pregnancy. After so many uncertainties, I delivered a perfect baby boy in December 2014. Seven days later I learned my melanoma spread to my liver, lungs, spine, and subcutaneously all over my body.

First I went to a large provider in the Midwest. They put me on traditional chemo. It was like fertilizer and my cancer spread. My team told me I should, “Spend what time I had left with my family.” My son was 6 weeks and my daughter was 2 years old.

Because of the people on this board, I switched my care to MD Anderson. I went on the (then) Ipi/Nivo trial. I made it through 3/4 infusions and was devastated I didn’t get the fourth. It didn’t matter - my scans showed I had 95% tumor reduction. Nine months after beginning the trial I received NED status. In March 2017 I completed 2 years of Nivo and have been healthy since.

I received a call from MDA last week and they want me to enter another trial; this time they are going to study me! (I’ve always wondered why they weren’t looking at folks for whom these treatments have worked.) Here is my non-medical explanation: Long story short, I will donate my “healthy” gut bacteria (through stool samples). They will give my bacteria to patients who do not have that bacteria and see if that makes a difference.

I feel lucky to live life and to give back. I hope this works.

Side note: My daughter is almost 7. She loves reading and gymnastics. My son is 4 but will be 5 in December. He’s the kindest person I know. Since my diagnosis, I’ve finished grad school and now my husband is entering it. We’ve traveled throughout the US and Europe, and even purchased a lake cabin.

Well, there you go. Blessings to everyone. Keep on keeping on!

Ashley

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Bubbles's picture
Replies 3
Last reply 9/16/2019 - 8:17am

MERCY!!! Between lots of new worried peeps, strange controversies, dear ones from this forum facing some tough times, and old timers sharing busy, productive, happy lives AFTER their Stage IV melanoma diagnoses.......... I was thinking.....we need some LIGHT, LOVE AND LEVITY!!! And that = LIZZO!!!!!!!!!!!!!!!!!!!!!!!!!! So, this morning I wrote this:

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2019/09/baby-h...

"Baby, how you feel'n?"

"Feel'n good as Hell!" Gotta love Lizzo!! https://www.youtube.com/watch?v=SmbmeOgWsqE

There are certainly days and circumstances in life that prevent such an answer!!! Still, perspective seems to be the largest part of what is required to feel good. I've known healthy peeps of all ages who wallowed in every small misery (physical and social) they experienced daily. I've been blessed to meet incredible individuals, children to octogenarians, who - despite dealing with physical pain from cancer and other maladies, broken families, personal loss, daily struggles of all kinds - were resilient with a ready smile and forward looking approach to the crazy life threw at them. These astonishing souls weren't in denial or "faking it" either!!! If asked, they would frankly and honestly share their difficult experiences without batting an eyelash! But, that was not their focus. Living, learning, sharing a laugh and real connection, the wonder of it all - was. These folks didn't ignore the difficulties of others either!! Some were the most amazing activists, working daily to make the world a better place for all of us.

Like them, I too have the choice. I can realize the difficulties the world faces and choose to hide, become depressed, or act! I can focus on my negatives, my pain, my worries. Or - I can choose the light.

"I do my hair toss. Check my nails. Baby, how you feel'n? Feel'n good as Hell!!!" Thanks, Lizzo.

And thanks to each of you here. Let's share some light. We got enough of the other crap! Happy Sunday. Celeste

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JeanD's picture
Replies 7
Last reply 9/16/2019 - 8:31pm
Replies by: BrianP, JeanD, lkb, Ellenb626, Bubbles

Hi,

My wife had Sentinel Lymph Node biopsy surgery two weeks ago, she got removed one node under the armpit and one in the neck (her melanoma is at the junction of neck and shoulder).

For about a week now she's had severe cording (Axillary web syndrome), she can't even raise her upper arm to the horizontal. Although old belief was that cording would go away by itself after a few months, newer research shows it very often does not. You people seem to be mostly from the US, where I understand you'd get physiotherapy massage or stretches, but we're in the UK where the NHS does not seem to recognise cording as a condition. Doctors she'd asked have mumbled about ligament damage but do not seem to want to take any action. My wife now does stretching and massaging on her own, and it has helped a lot (she used to have pain straight from her shoulder into her fingers, now it stops somewhere in the forearm), but she feels like it will never resolve everything given how hugely restricted she is in her movements.

Any advice for her?

I know it is a lot less vital than many other aspects of melanoma, but it feels like one thing too many for her to deal with at the moment.

Thank you very much, and best wishes to you all,
Jean

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Cindy Lou's picture
Replies 5
Last reply 9/15/2019 - 5:56am

Hi, everyone! I have an appointment with Dr. Kudchadkar at Emory’s Winship Cancer Center next week. Has anyone here been seen by her? She is a melanoma specialist in Atlanta. Keep up the fight!

Cindy Lou

Stage 3C resected; Primary cheek 1.9 ulcerated Clark lvl IV WLE neg SNB 7/2015; Satellite met cheek WLE 3/2016; Mets sentinel nodes SND & Parotidectomy 10/2018; 12 treatments Opdivo disc. in May 19; surgery mets in neck 9/19

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Anonymous's picture
Anonymous
Replies 19
Last reply 9/15/2019 - 5:47pm
Replies by: Edwin, MelMel, Gene_S, Bubbles, ed williams, Anonymous, Ellie_82

Hi all, new to this forum (and the world of melanoma) and would really appreciate any advice. I am of North African origin and have tan skin. All my life I've had very little exposure to direct sunlight even though I grew up thinking that I am very low risk for skin cancer because of my dark skin. About 2 years ago a fairly large mole appeared at the sole of my right foot and I completely ignored it and thought it was just another mole as I have quite a few. It didn't seem to change in size or appearance but does look asymmetric. A couple of weeks ago, a cousin of mine had a large mole appear just under her knee, she visited her doctor and was urgently referred to a dermatologist. Thankfully her mole turned out to be normal but that prompted me to have mine checked and I went to see my doctor yesterday. As soon as she saw it she looked concerned and said it didn't look normal and I needed to see a dermatologist in the next 2 weeks. I am now sick with worry and waiting for an appointment. I feel upset and stupid for not having it checked sooner but the idea that it could be anything serious had really never crossed my mind. Now that I can't stop myself from reading about it I have learnt that an atypical mole under the foot is the most common form of non-sun exposure melanoma in dark skinned people. Has anyone experienced something similar? I guess my main concern now is if this turns out to be malignant, what are the chances of it not having already spread to other lymph nodes and organs? Could it be in-situ for all this time or is the fact that i've had it for 2 years bad news?

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Gene_S's picture
Replies 6
Last reply 9/14/2019 - 4:52pm

https://www.cancernetwork.com/melanoma/inflammatory-marker-linked-poor-p...

A new study indicated that the measurement of levels of C-reactive protein (CRP) in the blood has been found to be an independent prognostic marker for survival in patients with melanoma. Patients with the most markedly increased levels of CRP were found to be at high risk for melanoma recurrence and death.

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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MelanomaMike's picture
Replies 8
Last reply 9/16/2019 - 9:31am

Hi guys! Boy what a day, my wife and i take care of feral cats (now were down to one sadly) and we have been trying to trap one in particular that had spine problems (dragging his rear legs when he walked) we finaly got his butt! I grabbed him but got bit (finger) as i crammed him in the cage ouch! Went to Kaiser, Amox & Clavulanic pills, he bit fairly deep but i wasnt gunna let him suffer anymore, and still got him in..Vet said possible Neurological or hit by car, we put him down, GreyBoy was his name...im just glad we finaly caught him, its been over a month! He was still quick though...We worried so for him...sorry about the NON Melanoma topic, it just really effected my wife & I, we love animals, but we took care of him Finally...
Have a good weekend, ill chat more tomorrow....Mentally drained...

Melanoma Will Not Beat Me or my MRF Family! www.wespark.org www.covvha.net

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gopher38's picture
Replies 3
Last reply 9/13/2019 - 7:07pm
Replies by: Brian j, marta010, tedtell1

Hello all. My melanoma seems to be kicking up recently, and I'm scheduled to meet with him again on the 26th to discuss next steps (in the meantime, he's supposed to be requesting BRAF testing on my tumors, finding out what I was really getting in the blind trial, and ... coming up with a plan). I think my current doc is a smart guy, I like him personally, I think he's concerned with my health, and the hospital (Abbott in Mpls) is relatively convenient, but ... I don't think he's really a melanoma specialist. I recently called Mayo Rochester to ask if they were in-network for my insurance, and I was told that they were. I'm going to hear what my onc doc has to say on the 26th and I'm inclined to stick with him, but I'm also checking out other options. Wondering if anyone has a recommendations for melanoma specialists, either at Mayo or at another Twin Cities area hospital. Can either post here or send me a PM (this forum supports private messages, doesn't it? Haven't even checked). Thanks in advance.

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Jewel's picture
Replies 9
Last reply 9/14/2019 - 2:15pm

My husband had his first treatment of Opdivo today. Our oncologist is fine about getting the flu shot but I was surprised how divided some were on this. May I ask if you did or didn't have the shot while on treatment? Thank you.

Jewel

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Jubes's picture
Replies 11
Last reply 9/17/2019 - 5:00pm

Hi All

I’ve been neglecting you all as I have been juggling all my doctors appointments with work and FUN!! Just had CT and still NED. Hope this gives some hope to those struggling as I was given 6 months in 2014. My joint problems are improving after using humira for 12 months and we are even going to try going off it and see what happens. You will always be my family and I will never forget all the help and support I got from this site! Anne-Louise

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sharonlynn210's picture
Replies 6
Last reply 9/12/2019 - 9:41pm

I know melanoma travels to groin , axillary, and neck nodes. My son had a full lymph node dissection in the right groin area in Feb 14 2018. He did a year of Keytruda and has had clear scans. He found a small bump in a node in the back of his head. has anyone had their Melanoma travel there?

Sharon

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