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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Replies by: Bubbles, Anonymous, CindyJ

i was diagnosed Jan 4 with Melanoma, i found a little callus looking thing on bottom of my foot , near the upper arch, the soft part of the foot.  I was immediatly referred to a surgical oncolgist with a very good reputation at UCLA, i liked him and felt cofident.  Sent for a PETSCAN January 11, surgery for the removal was Jan 17.  Excision was made, wound was left open and dressed with daily wound care for 4 weeks, the same day i had one lymph node removed from my groin.  Double whammy.  I was not allowed to put any pressure on my foot  for about 7.5-8 weeks.  That was challenging because i am a very busy active person.  My tumor was NOT ulcerated and the mitotic rate was low enought not to be concerning.  Even though there was a microscopic deposit in my lymph node. they have opted to watch the situation with ultra sounds and ct scans.  I had a second opitnion and simliar thoughts were shared.  Not to treat me, and to hope it did not return.  Apparently the reoccurence rate for people specific to my condition was relatively low.  Im still nervous anyway.  I have had a soreness in my inner thigh under the area where the node was removed but several inches away from the scar and node removal area....Feels like a bruise ..Not sure if this is going to go away, i was sleeping with my leg elevated for 8 weeks and also still learning how to walk properly.

 

anywone else have any experieve like this

susanna

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JW's picture
Replies 2
Last reply 4/15/2018 - 3:06pm
Replies by: JW, jyc

Hello, 

My husband was diagnosed last week with anorectal melanoma after having surgery to remove what his doctor had thought was a benign polyp removed from his anus. We have our first appointment with an oncologist tomorrow. I've been reading a lot online, and it all looks pretty scary and complicated.  I'm hoping to connect with others who have experience with this rare diagnosis.

Thanks!

JW

JW

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Lmshel's picture
Replies 1
Last reply 3/30/2018 - 1:17am
Replies by: kathycmc

I found this small spot on my daughter when putting a necklace on her. She is 7. I took a high quality image so I could zoom in and get a closer look. It is elevated in the darker area. I have a personal history of stage iii melanoma, so I'm freaking out! She sees a pediatric dermatologist on 4/16/18. Has anyone experienced something like with their child... It looks super scary to me!

https://photos.app.goo.gl/KqVKQG9eGmqLSRer2

 

 

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mrsaxde's picture
Replies 9
Last reply 3/31/2018 - 1:13am
Replies by: CancerSpouse, TexMelanomex, Bubbles, SABKLYN, bjeans, Anonymous

They told me that the first chemo agent I would be getting, cyclophosphmide, was goiing to be rough, and they weren't kidding! Add to that 48 hours of having to get up to pee every 2 hours, and you have a recipe for being miserable.

Today I'm feeling better and actually got out of bed. Staff here all tells me I'm doing a good job. So I soldier on in prepartion of getting my cells and the IL-2 that comes with them.

"To cure you they must kill you. The sword of Damocles hangs above your head." -- Lou Reed

But for today, it's basebsall!!

-Bill

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tedtell1's picture
Replies 8
Last reply 3/29/2018 - 10:36pm

Friends;

My second scan showed NED! My wife and I are headed to San Diego Sunday. The NIVO continues to give me mild issues, but nothing of any great significance!

Ted

Ted

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calm227's picture
Replies 6
Last reply 4/1/2018 - 12:35pm

Hi everyone,

I'm new to this community but not very new to melanoma.  I had a Stage 1 melanoma in my left calf that was removed via wide excision surgery in early 2010; nothing was done to my lymph nodes.  I have had regular derm. checkups (twice yearly, then yearly) since, and nothing has shown up.

After having acute gallstone pancreatitis in 2014, my alkaline phosphatase was not quite normal over time, so eventually, in 2017, my primary care physician decided to do bloodwork beyond the stardard "metabolic panel" for my liver:  GGT and LDH.  GGT was normal (which ruled out a liver problem), but LDH was just above the range.

I thought the high LDH was odd, so I asked to recheck it at my annual visit, and it had increased.

Altogether, I have had it checked 4 times  (plus the one time it was checked in 2010 in conjunction with the melanoma surgery when it was normal).  The normal range is 116-250, and my scores are:

5-11-17: 251

10-19-17: 275

1-31-18: 326

3-27-18: 300

My primary care physician sent me to an endocrinologist to rule out hyper parathyroidism, and in the process, we figured out that the high alk phos was likely due to osteopenia and low vitamin D.

But I was left with these high LDH scores.  After the 3rd LDH test, having read about the connection between LDH and melanoma, I asked my primary care physician if she would refer me to an oncologist.  Instead, an oncology team reviewed my case and recommended I get a PET/CT Scan, which my insurance approved and I'll be getting on April 3.

Obviously, they are taking this seriously.  My questions are:

1.  Is there anyone who gets these somewhat high LDH readings, and what have they indicated?

2.  Is there anyone who had stage 1, been told all is fine, and then had it reemerge or spread internally years later?

I'm not even sure what else to ask.....    I figure that since the oncology team requested it and insurance approved it, it must be serious.... I have just been trying to stay calm about it!  Thank you.

 

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Hey all - 

Just wanted to do an update and ask for advice. My mom did her 3rd round of the combo infusion March 12th. She was battling low sodium so it took a couple weeks to get that treatment. After she started having migraines. We had an MRI yesterday that showed she had some brain tumors that we haven't had before. They seemed to pop up pretty quick, her MRI at the end of December was completely clear. Is this a response to the combo treatment or is this just a progression of the cancer? They are switching up medications but I haven't actually spoke with the Dr. yet. 

Any positive stories or advice? She went back on the steriods and it seemed to lessen the pain today. We thought maybe the migraines were just a side effect of all the medication combos and the prednisone was helping those but now she is scared and losing hope. 

Thank you,

Aubrey

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Jamie1960's picture
Replies 3
Last reply 3/28/2018 - 7:15am

To date, I have had three WLE for known cutaneous melanoma, all with clear margins. I was disturbed when my optometrist pointed out a "CHRPE", acronym for a congenital pigmented area on the retina, during a recent routine eye exam.

Prior to moving to Maine from Baltimore, my previous regular eye exams had been done by an opthamologist at the Johns Hopkins WIlmer Eye Institute; gievn the doctor's reputation, I believe he would have found this condition i a prior exam.

My understanding is that ocular and cutaneous melanoma are entirely different / unrelated, but would welcome insights from anyone regarding "chirpees" as these seem to be called.

Thank you

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ariana.bennett's picture
Replies 5
Last reply 3/28/2018 - 10:47am

Hi, I have a small black mole that appeared with a couple of other moles during puberty. A year ago, I noticed the mole felt a bit rough and when I rubbed my finger on it black skin flaked off. Ever since then, it'll occassionally do this. New black areas will grow and the mole will get rough/dry and the top layer will eventually peel off. What could be the cause of this? Is this a symptom of melanoma? I searched online and it says a flaking mole could be cancerous and now I'm freaking out

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jagstter's picture
Replies 5
Last reply 3/30/2018 - 3:06am

I feel guilty posting, as I haven't been very consistent on the forum & would rather be encouraging others, instead of relating my own woes ... frankly, I don't know where else to go. Nobody seems to understand.

Recap: MDA in December, '17 ... lungs are resolved, yay! However, prostate (180 grams) & right kidney (4 cm complex tumor) likely both have cancer. See you, in June???

As I am experiencing hematuria, flank pain & other urological "fun," I knew I couldn't wait. Discussion w/ my local Urologist (and more importantly, my wife!) led to January trip to Mayo, Phoenix. Dr. Mitchell Humphreys, highly regarded, says, "kidney has to go, now!" Schedules prostate surgery for April, after nephrectomy recovery. Then, things get wacky & the radiologists quibble for a week or 2 ... finally, senior radiologist says, yep - cancer & take the kidney. Unfortunately, now the window is passed & I have to wait :-(

So, April 10 starts the year of the knife & I am so tired of it all. MDA wants another brain MRI (plus, the other usual stuff) to check on a small sub-centimeter mass found, last year. Trying not to blow that one out of proportion, especially knowing it will be July or August, before I go back to Mayo for the kidney. I don't need any more complications!

Finally, my mind keeps going back to the genetic testing results from MDA. BRAF positive & TP53 mutations. The latter (based on my own research) seemed to have some import but was quickly dismissed @ MDA as commonplace in many cancers. Now, in a little over 2 years' time, I'm looking at multiple, simultaneous cancers? I just can't see that as a coincidence ... my brain just doesn't seem to be able to reconcile.

Sorry for my ramblings. You are such lovely people & incredibly courageous ... I am humbled & embarrassed, when I think of the hardships & losses many here have endured. I pray this year holds much good in store for you all!

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Anonymous's picture
Anonymous
Replies 6
Last reply 3/30/2018 - 3:14am

I never post on here, I've sat back silently for 1.5 years. Stage 4, on Opdivo for a year, after BRAF combo initially. Anyway I see some people here quarreling, life is too short for that! I wanted to give you all a good laugh so here's my story:

I'm in my early 30s and in decent shape (former college/pro football player) I try to maintain my appearance the best I can. I used to have a fire engine red beard, after a month of Opdivo all the color in my beard dissapered, I looked light Santa! So I know that vitiligo is a side effect and a good one.
So fast forward a year on Opdivo, I was using the men's room today, and I noticed my genitals now have bleach white spots all over it. Yep I have vitiligo on my parts, I'll laugh and take it as a good sign.

Be good everyone, cannabis helps, and be good to one another

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IT Nivo combined with IV Nivo at MDA

https://clinicaltrials.gov/ct2/show/NCT03025256?cond=leptomeningeal&rank=6

Maybe I know more than I don't know.

If I were 35 years younger and knew what I do now maybe an education in the medical field would have been my choice.

 

Again my broken record reccomendation is get to MDA.

Rob

Adriana

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tedtell1's picture
Replies 3
Last reply 3/27/2018 - 2:53pm
Replies by: jbronicki, Bubbles, Linda5

Hey good friends;

My blood work was a little quirky this morning pre infusion (Nivo every two weeks). Last time my TSH had increased a whole percentage point while still being in the normal range from 2.5 to 3.8 in two weeks. Interesting, but still in normal range. Today TSH had dropped to 1.0 and BUN was at 28 (normal is 26). Any thoughts, or just my hypersensitivity to anything different? Also, having my PET/CT full body scan tomorrow for the second time since diagnosis. First was clear. Little worried as I have had a persistent cough for 10 days and can't shake it with antibiotics or anything else. Probably nothing...but you know, HYPERSENSITIVE!

I welcome your prayers, loving thoughts (I have so many supportive friends and family who aren't in to praying, I have learned to welcome that too). Thanks so much for being a place where everyone knows where I am coming from!!!!

Love you all,

Ted

Ted

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Julie in SoCal's picture
Replies 14
Last reply 4/14/2018 - 5:24pm

Greetings Melahomies!

Just got my scan report and everything is "normal" and my brain is unremarkable!  I love it and sure don't take it for granted!  It has been one heck of a year, so taking a long stop in NERD-land is very welcomed.

I'm also recovering from total knee replacement surgery.  Just let me say WOW!  I am so glad I did this! My surgery knee feels better now after surgery than it did before surgery.  Yea, I was in a lot of pain.  So I'm sitting in my "ugly chair" with my ice on my knee (ice is my best friend right now)  half deciding if I want to get up and take a walk.  I think I'll sit here for a little while longer...

Anyway, just wanted to share the good news.

Fight on friends!

Peace!

Julie

 

 

Stage 3c  (TXN2cM0)-- 2008 WLE, SNB, LND, HD-INF, GM-CSF, (intransits) 2013 IPI, (intransits) 2014 PEMBRO, (intransits resected in 2017)

Stage 3a 2017 NSCLunc Cancer VATs; Carboplatin & Pemextred;  radiation

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