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.

Expand/ Collapse Topic
 
Replies By
View Topic
Jules166123's picture
Replies 11
Last reply 4/8/2018 - 8:50am

I had a Melanoma removed in November last year and it was stage 1b. I then had a wider excision 2mm which showed cancer cells in some of the skin but there were still a 1mm clear margin my scans salons came back clear so although they said I was now stage 3b I did not need further treatment. I am now on 3 monthly checks and 6 monthly scans. However recently my scarring tissue has started to itch and when looking through a magnifying mirror I can see several dark spots on it. Should I be worried? I see my skin specialist on 20th April (it is now the 4th) can it wait till then to be checked? 

Login or register to post replies.

QuietPoet's picture
Replies 6
Last reply 4/8/2018 - 1:08am

Hello!

It's so wonderful that this forum is here and that even those of us who aren't having to fight as hard as so many of you are still able to get support and our questions answered. Thank you.

I'm going for my 3-month skin check next week, and in another limb from my initial melanoma (which was only a 1A) a new slightly under the skin growth has popped up in the last couple of weeks. I have multiple dysplastic nevi, and this growth is close to another mole that doesn't look too different from all of my other weird moles. My questions is: if my dermatologist decides to biopsy it, what is the appropriate biopsy type given that it's slight subcutaneous and near another mole? She generally does shave biopsies (I hate how these look after the fact! I litterally look like my body is being nickled and dimed!) but if this is some kind of in-transit thing from another mole, I don't know what kind of biopsy would capture the nature of it, if, indeed, it is anything at all.

Thanks in advance for your input.

Oh, and -- Go Giants!

Stage 1A excised, keeping an eye on another; multiple dyslpastic nevi.

Login or register to post replies.

smyers5015's picture
Replies 10
Last reply 4/7/2018 - 8:32pm

I've been on this board since my diagnosis but have only posted a couple of times.  I hope you find this motivating. 

I was diagnosed last April 19 with stage IV metastatic melanoma, 1 large tumor 8.5cm x 4.5cm on my left adrenal gland and a small 1.1cm nodule on my right lower lung.  Further testing showed I was BRAF +.  At diagnosis I started my research and adjusted my supplements based on that research (just in case) to a daily multi-vitamin, Curcumin, Miatake-D, Resveratol, and an extra 1000mg of vitamin D.  In May of last year I started the Yervoy/Opdivo combo and was able to take all 4 doses at 3 week intervals.  On my second scan after the 4 rounds of the combo the tumor had reduced at 4.5cm and no change in the lung.  I started Opdivo maintenance at that point continuing every 3 weeks.  I really had few side effects during the initial treatments but around Halloween they started, a rash, taste went haywire, loss of saliva production, sore joints and muscles and severe fatigue.  Most of those have been taken care of by prednisone.  I had another follow up scan at the end of January and the adrenal tumor was basically stable from the prior scan and a consult with a surgeon was made as they felt it had reduced enough to resect without damaging other organs (other than the adrenal gland).  I had the surgery on 3/23.  Today I went for the follow up with the surgeon and got the pathology reports.  The report stated "Adrenal Gland with necrosis, fibrosis, chronic inflamation, focal granulomatous inflamation, and hemosiderin-laden macrophages."  But most importantly... "No Malignant Melanoma Identified."

 

It appears the immunotherapy did it's job, and although I know it's a-typical results has allowed my body to kill the active cancer cells and left the structure.  This had never crossed my mind, I was planning on radiation follow ups.  I wanted to share because I know good news is often hard to come by with this disease, but it can happen, does happen and keep fighting because we are more than the disease!

Login or register to post replies.

Replies by: Rocco, jbronicki, Bubbles, Anonymous

https://www.washingtonpost.com/powerpost/house-approves-right-to-try-bil...

 

"Still, the effort has run into criticism from FDA Commissioner Scott Gottlieb, a Trump nominee, who told House lawmakers in the fall that while he would implement the legislation if it becomes law, he opposes a federal version of “right-to-try.”

The FDA authorizes “99 percent” of the treatment applications it receives each year under the so-called “expanded access” program for seriously ill patients, Gottlieb told a House subcommittee on Oct. 3. He said most of these treatments permitted under “compassionate use” are ineffective.

“The vast majority of people who will use a drug through expanded access are using a drug that doesn’t work,” he said."

Because you made them wait until they were on the verge of death before granting access???? Don't want to take a chance on letting your numbers look bad. angryangry

 

Rob

Adriana

Login or register to post replies.

mrsaxde's picture
Replies 15
Last reply 4/7/2018 - 2:44pm

I tolerated 4 out of the maximum 12 doses of IL-2. Last night when I stood to use the urinal bedside and got winded I started to get concerned. Fortunately they had hooked up an oxygen cannula and I put it on. IO was supposed to have a dose of IL-2 at 3am. At 2am the nurse did my vitals and said "I don't see anything here that would prevent Dr. Shindorf from ordering the next dose of IL-2." I responded by saying, "If I get a vote, let's wait until morning."

When no IL-2 came at 3am I wondered whether my vote had influenced the decision. When the nurse came to draw labs at 6am I asked. She said, "It seems that the decision had already been made, by the attending (Dr. Yang)."

When everyone came through on rounds this morning Dr. Yang told me that they had decided to stop the IL-2. I said, "That's good to hear, because that's where I am, too."

So now it's a few days of recovery, getting my blood counts back to normal, and one of the most nerve-wracking parts of the treatment -- waiting to see if it has worked.

Thank you all so much for the outpouring of love and support you have provided me. I love this forum and I love all of you, too.

-Bill

Login or register to post replies.

iskitwo's picture
Replies 5
Last reply 4/6/2018 - 9:53pm
Replies by: cjm22, iskitwo, Bubbles

 I am currently 3a. I posted back in Nov that scans showed a new 5mm nodule. Pet scan in Jan showed small amount of uptake (1.5) nodule 8mm.  Current scans show that nodule is now 9mm. Doctor mentioned doing a biopsy but it is in the lower left lobe and the radiologist cannot reach it by needle biosy. The oncologist said that it could also be done by VATS or that we could also continue to watch with scans. Just not sure what to do at this point. I guess at this point my question is....is it possible for a benign nodule to have this much growth? would it be best to justs biopsy and get the answers? 

Login or register to post replies.

Paulajane's picture
Replies 3
Last reply 4/5/2018 - 10:25pm

So my biopsy came back metastatic melanoma, melanoma cocktail. Since it is going to take 3 weeks to get into the melanoma clinic I pushed for a pet scan so I had an idea of how much cancer I have. The pet scan only had up take on one spot which was one of three more biopsies I had when the first path report came back. Can anyone tell me how the pathologist knows that the first biopsy wasn’t the primary site?

 

since the pet scan Looks so good they said now I can just have the site of the metastatic melanoma surgically exsized and i don’t need to see the specialist at the melanoma clinic. 8m very nervous about this. 

Login or register to post replies.

marta010's picture
Replies 3
Last reply 4/5/2018 - 4:39pm
Replies by: cjm22, marta010, Bubbles

Hi All - After two years of relative calm, my husband, Larry, had his 3rd crainiotomy to remove a previously gamma knifed brain met that decided to act up.  He will have his 5th gamma knife procedure next week to the tumor cavity.  In addition, he has an infusion of Keytruda scheduled for Monday.  I hope we're not opening pandora's box of side effects as he did have a brain edema flare 2 years ago also while on Keytruda.  He discontinued Keytruda at that time and has been on Tafinlar.  At this time, he does not have any other known brain mets (will be checked again during the pre-gamma MRI) and minimal stable tumor activity in his neck and portacaval lymph nodes.  We're really hoping that Keytruda mops up the residual activity in his lymph nodes and prevents new brain mets.  This has been a long journey - just passed the 6 year mark since initial diagonsis - and I always appreciate the knowledge and wisdom shared by the participants of this forum.  Wishing all of you the best possible outcomes.

Ann

Login or register to post replies.

ACDO's picture
Replies 2
Last reply 4/5/2018 - 11:02am
Replies by: ACDO, Janner

my husband (37/m Caucasian) had a mole removed from his back and just got the results:

Diagnosis: fibrous papule

Compound melonocytic Nevus with architectural disorder and severe cytologic atypism of the melanocytes (displastic nevus, severe)

 

Compound melanocytic Nevus with elongated, fused rete edges, extensions of the junctional component beyond the dermal portion and concentric lamellar fibrosis within the underlying papillary dermis. A mild superficial lymphocitic infiltrate is identified. Cytologic atypia is severe. 

 

we are very worried. Doctors are going to remove more of the area. It’s close to his spine. Wondering how worried we should be? If we should get second opinion and do further testing. 

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 8
Last reply 4/5/2018 - 7:47am
Replies by: bjeans, Janner, Anonymous, Nanners10

Hi everyone,

I have a small black mole that about a year ago just started to occasionally flake and peel. If I look at it with a flashlight it's two different shades of brown/black. Sometimes it even grows black areas that flake off. I showed it to my GP and she said it's benign but I'm not fully convinced.

It hasn't changed in size at all but it does look different because of the flaking and peeling and regrowth of skin.

Is a mole that flakes and peels a sign of melanoma?

 

Login or register to post replies.

lindanat's picture
Replies 4
Last reply 4/4/2018 - 11:49pm
Replies by: lindanat, kst, Bubbles

Hello Mel Peeps,

This forum is awesome for up to the minute information and experience so I'm hoping someone out there has experienced my current challenge.  I'm Stage 4 and have been on Opdivo for 28 infusions (previous to that did Yervoy/Opdivo combo for all 4 infusions).  So far, they say NED.  Most recent scan showed pulmonary edema (cardiogenic) so an echocardiogram was ordered.  The echo shows my EF (ejection fraction - something I never knew existed) to be very low (20% and normal is 50-60%).  My melanoma specialist (Dr. Freeman, formerly of Angeles Clinic and now with City of Hope) is calling it autoimmune cardio myopathy and is discontinuing the Opdivo for the time being.  They (she and Dr. Sharma my onc) have put my on prednisone and Lasix to hope to counteract the attack of the heart.  It seems there are rare cases where Opdivo turns on the heart.  I see a cardiologist tomorrow to determine next steps.  Have any of you experienced this turn of events?  On the one hand, I want to deal with the heart issues right away but I'm also terrified, on the other hand, to stop Opdivo.  

Any thoughts are greatly appreciated.

Linda

Login or register to post replies.

tedtell1's picture
Replies 16
Last reply 4/4/2018 - 10:31pm

Hi;

I am Ted. I have had a bit of a weird experience. A few months ago I found what I thought was a subcutaneous cyst on my back over my shoulder blade. It was quite deep under the skin with nothing on the surface. Checked with my primary care, no said, no worries unless it bothers you. Fast forward to January, lump is burning a little and surface has become a little reddish, go in to have it excised in a general clinic, the PA upon opening me up says, "oh, this isn't what I expected". Sends it off for biopsy. A week later I get the results, The tumor (not in a lymph node by the way) is a secondary metastatic melanoma. We have no idea where the original tumor was. I have now met with an onco, pet scan is clear except for leftovers in my shoulder which will be excised in the next month. MRI of my brain clear as well. That was all good news. I am diagnosed stage IV, is that  appropriate since it has not spread to lymph or organs? I am starting Nivo every two weeks for the next year. Would love to hear if anyone else has similar experiences and what I can expect from the Nivo infusions. Do people have ports? Any info is appreciated.

Ted from Minnesota

 

Ted

Login or register to post replies.

Hello again everyone.  Well, after seven months of clear scans and very minor side effects, I've got a new mutant to cut out.  My surgeon thinks it's fully resectable and it's less than two inches away from the edge of the WLE from my first surgery.

I do not have details about ulceration, mitosis rate and all that yet, but I'm mainly curious about continuing Nivo if there was a progression.  I know it's somewhat cumulative, so the more you can take the better, but when there's already been new progression, is it time to jump ship to a new drug?  I'm getting treated at Vanderbilt, and they have a tumor board where they decide what treatments to recommend, and I have not heard their opinion yet, and probably won't until after the surgery.  I have a feeling that my oncologist is leaning towards just continuing on Nivo for now since I've been handling it well.

Login or register to post replies.

Replies by: Janner

Dear all

 

Since 2 months I have a dark area under my toe nail. I attached one picture to get some advice. Thanks a lot

 

https://drive.google.com/open?id=0B8Rg9kqxp7lJYUswWEhUeDMyWHZZRDVGYVVGOG...

 

 

Login or register to post replies.

Pages