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
abeluta's picture
Replies 1
Last reply 4/10/2018 - 12:05pm
Replies by: Janner

Hello. I am a 41-year-old woman from Romania and I apologize if I do not express myself correctly. In December 2017 we got the diagnosis of melanoma in situ completely excised with clean edges. For my silence I asked for the second opinion and the result came in three months (March 2018) totally different - Spitzoid type extensive melanoma in the surface Breslow 1.3mm Clark 3. The anatomopathologist who worked the first time does not explain why she the result came so that all the damage in depth was under 1 mm (she had seen 0.6 radial growth in the epidermis) and sent the lasers to 3 of the opinion that came with malignant melanoma Breslow 0.7 and Clark 3. I'm totally debuslated. I have 3 totally different results, if I analyze the results nothing coincides. neither the depth nor the mitosis or the rest of the details in the description. What do you advise me to do? Spitzoid melanoma how does it look? my lesion had an atypical appearance with irregular edges. I did CT with a contrast substance on 4 segments (head, thorax, abdomen and pelvis) and went out well, my lungs said I had two 0.5 mm nodules but were calcified and unrelated to melanoma and the echo soft parts in the inguinal region came out ok with ganglia in normal limits. I am scared, I do not know what to do, but I can help with advice. I'm thinking of sending biopsies to another country but I do not know where.

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 10
Last reply 4/13/2018 - 9:54am

Hi, my husband is currently getting nivo treatments for stage IV. 

We have asked his Dr. if he should stay away from alcohol and have never really gotten an answer.  We are not big drinkers by any means but would like to know one way or the other if this is an issue.  A few months ago he had four beers at our daughters wedding.  He told his Dr. and he just said "oh, that's fine, special occasion".  That comment sounds like it's something he shouldn't do on a regular basis.  It seems to me, when fighting cancer you would want to stay as healthy as possible, so why risk doing anything unhealthy.  On the other hand, his Dr has never said anything about any restrictions, or about nutrition either for that matter.  I understand some things are common sense but I think if eating a healthy diet for example was essential to recovery, someone would of mentioned it to him. 

I'm just wondering others opinion on both drinking and eating healthy, for someone with cancer, as opposed to someone whithout. 

Thank you!

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 2
Last reply 4/15/2018 - 9:50am
Replies by: Anonymous, jetdoctor67

Hm. Got a letter from my insurer saying the denial of claim was reversed on appeal. I was aware Castle Biosciences was appealing, but did not expect they would succeed. (Castle was not going to collect from me anyway.) 

”Upon review of the documentation submitted, the request is approved. The DecisionDx-Melanoma signature indeed may be an independent predictor of metastasis risk to assess and design individual preventative measures of metastases for patients such as this patient. The reviewer that made this decision is a Board Certified Medical Doctor in Dermatology. The reimbursement associated with this approval has been processed and you will receive a corrected explanation of benefits.”

(Happily no metastatic occurrence almost 2 years post diagnosis but keeping an eye on things..) 

Thanks to all who share here, and best wishes (and prayers) especially to those fighting active active disease.

Login or register to post replies.

Nick C's picture
Replies 4
Last reply 4/10/2018 - 7:51am
Replies by: Nick C, gopher38, Bubbles

Hey...

Had a scan on Friday...still showing progression. This morning they ended my participation in the clinical trial. I was offered two new trials (one with Yervoy) or just do the standard Yervoy treatment. Can't start either trial for at least four weeks. No waiting period to start Yervoy. So I decided to go on vacation and deal with it when I get back.


Login or register to post replies.

JuTMSY4's picture
Replies 1
Last reply 4/9/2018 - 8:47pm
Replies by: Bubbles

To cut a long story short, here is a brief synopsis of my history:

I was previously DXed with melanoma on my left toe - June 2014.  I have it removed (most of the toe really) that July, along with an SLNB which was positive.  A full dissection of my left groin in August of 2014.  Subsequently, I had a second resection of lymph nodes (near my left kidney) in November of 2014.  The tumors were tested and I am BRAF Negative.  

Thereafter, I complained of bone pain and a subsequent PET revealed a variety of melanoma in my chest bones, femur and potentially on my liver.  I began Yervoy in December 2014 - the pain cleared up within a few weeks but resultant scans after my 4 courses of yervoy did not show improvement.  I began Keytruda (only) in April of 2015.  

After about 12 Keytruda infusions, a PET scan suggested that I was NEAD.  There were spots on my liver that many doctors have interpreted as suspicious of melanoma, but it is not clear.  Given their historical changes and existance for years, many drs. believe they may not be.  I stopped Keytruda in September of 2016.

After about 1.5 years of NEAD, I had a single recurrence of my Stage IV melanoma  - it was an approx. ~2 cm "uncomplex" tumor in my right adrenal gland.  It was fully removed and apparently fully intact in my adrenal gland.  I posted this previously.  The surgery was, frankly, a cake walk compared to others.  

I returned to my oncologist and we discussed next steps.  My doc took the steps and my insurer approved Keytruda (17 infusions).  However, as I explained to my doc, I also feel fine.  We decided rather than an immediate treatment that she order a CT and reevaluate me at present.  Apparently a recurrence this late in the game is a bit of an odd ball.  We discussed potential resistant melanoma clone cells and also rogue cells still susceptable, but most of those seem to occur much faster than me.  I got the impression that someone having a recurrence like this was kinda rare.

At this point, I'm getting a scan Wednesday and then meeting my doc the following week, but seem things surprisingly up in the air.  Does anyone have an experience or recommendations or questions to ask?  To reiterate, I'm BRAF negative, so that option seems foreclosed presently.  Additional genetic testing didn't reveal anything beneficial, but my doc suggested she had some other research to look into.  

Thanks again - this place is a great resource as always.  

-Justin

Login or register to post replies.

doxiemom's picture
Replies 11
Last reply 4/19/2018 - 11:25am

Hi everybody, you may have read my story...I was diagnosed last May with metastatic melanoma (first presented in my breasts). Started Keytruda and ended up with mixed results. Breast tumors disappeared, but melanoma surfaced in spinal fluid (LMD). Fast forward, I am back on targeted BRAF therapy. Fingers crossed I can tolerate it this time and it is effective (couldn’t tolerate it in the past-fevers/rashes). My mobility has become increasingly impaired (I now use a cane and walker), which makes me depressed. Anyway, I want to thank Celeste (Bubbles) for sharing so much valuable info and encouragement with this group and also wish everyone the best in this struggle with “the beast.” ~ Carrie (aka doxmomma)

Login or register to post replies.

Raco's picture
Replies 16
Last reply 4/9/2018 - 10:49pm

Hi all, just had my First Opdivo treatment on April 5th,

waited a couple days to see how I’m feeling. 

My apt was at 1pm on 4/5/18  I had blood work first, than waited to talk to Dr and finally

in Chair at 2:30pm

My first infusion was for an hour but they said all others will be 30 min.
So, I came home and sleep for only 3 hrs, did not feel like eating.

Friday 4/5/18 went to work, I did fine till mid day, stomach issues so I came home, had a couple more issues late evening and was tried more than usual.   

4/6/18 in the Middle of night, my lower legs started itching just annoying.  But at 3am my stomach blew up.  I took some Imodium and have been ok all day.

Sat 4/6/18 no issues except being tired.

OverAll my first treatment was not really bad at all.
I just wonder if this is just at beginning of a treatment

and will not follow into my off week.

PLEASE, let me know how others are handling

the treatments.   April 19th Second treatment coming.

Robbie

Login or register to post replies.

linedfury's picture
Replies 1
Last reply 4/8/2018 - 7:45pm
Replies by: Janner

A bit about myself I'm a 19 year old asian male, with chronic uticaria, lentigo spots, and obese. Not sure if that is relevant to diagnosis.

Diagnosis: Right Anterior Proximal Thigh

Lentiginous compound melanocytic nevus with mild to moderate atypia and partial regression; please see comment. (D48.5)

Specimen Site: Right Anterior Proximal Thigh

Gross Description: Pigmented 6 x 9 mm fragment - outer edges inked: trisected

Microscopic Description: 

In this apparent shave specimen, there is a compound melanocytic proliferation. Junctional melanocytes are arranged as nests and as single cell with a lentiginous growth pattern. Melanocytes with nevocellular features are present within the dermis. In some areas more prominent inflammatory fibrosis is present, consistent with an element of partial regression. Cytologic and architectural atypia is observed, being graded as mild to moderate.

Comment: 

This histology correlates with an atypical nevus variant. The melanocytic process closely approaches, but does not appear to involve the lateral edges. The base is uninvolved in these sample sections.

 

My doctor said it was a dysplastic nevus, but the part about regression worries me. Any thoughts?

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.

cjm22's picture
Replies 14
Last reply 4/10/2018 - 6:06pm

I was just here last week despairing over my boyfriend's fast-growing lung nodules ... Things have gotten a lot worse since then. He had a PET scan two days ago and his GP called yesterday to ask if he'd seen it yet, since it's not good (so we haven't actually talked to an oncologist yet - that's on Monday - hoping against hope she'll tell us "Oh, you're still good, nothing to be too concerned about here.").

Now on top of the brain and lung mets we already knew about, the PET scan lit up lesions in his kidneys, spleen, adrenal gland, spine, some other bones, lymph nodes in his neck, and even his mouth (although we're hoping the mouth one might just be due to an intense gingivitis flare-up he's been dealing with lately - he didn't brush his teeth for 2+ weeks while he was in the hospital after his craniotomy). Apart from the lung metastases, all the other spots are <1cm. Small blessings at this point I guess.

The scariest thing is that when he had a full-body CT scan in mid-February when he was first hospitalized for the brain metastases, there was no sign of cancer anywhere beyond his lungs and brain. It appears to have spread extensively in just 2 months.

The cancer agency called him yesterday to schedule a CT scan for this afternoon. We think it's to confirm what the PET scan says.

I hate this disease and I hate that he's going through this. We are both so sad. He's in pain - his back hurts, his lungs hurt, his head hurts, his mouth hurts. He hasn't even gotten to start immunotherapy yet since he's been recovering from the craniotomy. Immunotherapy still scheduled to start tomorrow but I wonder if that plan will change in light of the much greater tumour burden now.

Feeling hopeless. I've never heard of anything like this before. I wish I could make it better for him. 

Login or register to post replies.

TSchiemann's picture
Replies 4
Last reply 4/9/2018 - 9:21pm

I’ve had a dark brown, almost black mole for as long as I can remember, since childhood.

however, recently it has hurt, gained a skin/scab, and bleeds/oozes clear fluid.

what could this be? 

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.

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.

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.

Pages