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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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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Anonymous's picture
Anonymous
Replies 0

I had a mole removed 6 months ago. It came back as mildly atypical, but not with clear margins. The doctor gave me the choice to have it fully removed or leave it behind. Because I'm at very high risk of melanoma, I elected for the exicison IF and ONLY IF the mole close to it would not be disturbed. He said no problem, he wouldn't cut into the neighboring mole.

He didn't. He put the stitches through it. I would not have agreed to that given the choice. Am I wrong in thinking that's kind of stupid for a derm to do?

I'm worried about 2 things.

(1) I'm worried stitching through the mole could itself cause cancer to develop in it by disturbing the cells. This is a theory some derms have, but it's only a theory.

Because of (1), I think I'd like to have the remaining mole removed because it's red and bumpy where it was stitched into. But (2) I'm worried about how this trauma will impact the pathology report. Can't trauma and scarring mimic melanoma?

These moles are at the top of my breast, so I'm sure all that scar tissue will be super fun when it comes time for me to get mammograms, and I wish I'd never had the first mole removed in the first place, but one thing at a time, right?

Would you have the remaining mole removed? Can I expect an accurate pathology report with the fact that the derm put stitches through it? Would you get a new derm?

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mrsaxde's picture
Replies 23
Last reply 3/29/2018 - 11:22am

They made my cells work all weekend in the lab and I just got the word that they're looking good. Chemo starts tonight. We're finally rolling!!

-Bill

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dbJoe's picture
Replies 6
Last reply 4/2/2018 - 6:55pm

Hey folks.

First off, let me say this board is tremendous. My doctors (not my surgeon), my wife, and friends seem to think I am knowledgeable regarding my disease, but the regulars here make me feel as if I'm in high school. Back when those in high school didn't have all the answers.

My older brother was diagnosed 2010 MUP. Mets to lung and gut. He was unable to tolerate Ipi after his second(!) HD IL-2, and sadly passed in 2013. In my ignorance I didn't pay enough attention.

I was diagnosed in January 2015, MUP. Mets in left supraclavicular and axillary nodes, which were removed in February. BRAF-. April through June I did Ipi, 4 infusions 3mg/kg every 3 weeks. Moderate AE's, mainly elevated ALT and rash. No tumor burden to observe.

All subsequent scans have been negative (positive for me!) except for one or two sub-centimeter pulmonary nodules that were of the 'now you see um, now you don't' variety. Hunky dory, right?

Now I read that OS and PFS stats are twice as high for those that caught the next train (PD-1, my plan 'B') ahead of Ipi. I've also learned I'm approaching the 3-year 'end of the tail' for ORR. I believe I am more anxious at this stage than I've been at any other. I know I should be shouting out I'm 'cancer free', but between you and me, I no longer make purchases based on length of warranty.

So, is there anybody out there with these circumstances? I got 3, Naturally I'm looking for a pen pal going on 20..

Thanx for being here, everyone.

Joe

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TexMelanomex's picture
Replies 14
Last reply 3/27/2018 - 8:35pm

Hey Warriors! I hope this finds you well and either in the thick of the fight (and winning) or savoring a recent victory. Coming up on my next round of Pembro this week and getting stitches out, finally, from most recent surery so I'm fired up!! 

I've read some really inspiring posts tonight as I have been absent for several days...I have also read some posts common to all of us at one point or another in this journey and I pray that all of us find the strength each day to battle this beast.

It has also come to my attention there has been a recent attempt to turn this into a research debate forum, which is not really my cup of tea nor do I think most people come here looking to debate the finer points of oncology theory and research, we are here for support and fellowship!  I suspect there are some incredibly bright folks, in some well-funded labs that are well suited to sort that out...don't get me wrong, I'm a big fan of developing anything that works for Melanoma (in humans) and I have had great success thus far with an experimental drug myself in a clinical trial. My hope is that we can stay focused on the battle ahead, enjoy the sweet victories, and support one another when the momentum swings in the direction of the enemy.

You folks are the best! Stay the course, fight the good fight, and warrior on!

PS Quick shout out to Melanoma Mike, hope you are feeling well brother! 

PSS Bubble and Ed...you continue to rock!

 

Tex

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JerLon's picture
Replies 8
Last reply 4/3/2018 - 9:07pm
Replies by: Bubbles, JerLon, Janner, Anonymous

Back in 10/2017, my FIL was diagnosed with Stage IV Melanoma.  Primary was Uveal Melanoma in left eye 27 years ago.

In 11/2017, FIL began cycle of Nivo/ipi through 1/2018.  In 1/2018, began Nivo every two weeks up until last week.

In February, scan showed growth in in 4x4 liver tumor to 5x5.  Also showed a number of other new mets throughout stomach and liver.  In March, another scan showed more progression (more mets, more growth in others).  

At this point, all treatment has stopped.  My FIL does not seem at all interested in clinical trials.  The doctor mentioned one oral drug that prolongs life by a small length in a small percentage of patients.  

A few questions:

1) Does anyone have any good resources on what progression can look like?  

2) Are there any resources on what symptoms might look like as it gets closer to the end?  We have no clue if we are days or years away?

3) I can't begin to imagine what my FIL is going through.  He is against clinical trials because he "doesn't want to be a lab rat."  I know this may be more psychological than medical, but any advice on how to advise him here?

 

Thanks for any help.

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