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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lwhaley94's picture
Replies 4
Last reply 5/14/2018 - 10:01pm

Hi, first time poster here.  I was diagnosed with melanoma on my scalp in September.  Results of lymph nodes were clear, no evidence of spreading.  Stage 1b.  Great news!

I have lumps under the skin on my arms for a long time and I worry that they are melanoma recurring.  I have received lots of information about what kind of moles to look for, but not much on what to "feel" for.  Any advice?  Is it my primary care doctor that I should be asking about this?  My dermatologist just looks at the surface, she doesn't feel anything.

I know I have had good news and I am very thankful, but I am cognizant of the possibility of spreading inside and wondering if these lumps could be something.

Lori Whaley

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Sharon93065's picture
Replies 5
Last reply 5/14/2018 - 9:42pm

First of all, thank all of  you who post your helpful suggestions.  Celeste, Jennifer (two of you) Ed, Mike, So Ca Julie, and all of you, too many to mention who are helping me on my journey.

State 4 metastatic melanoma, i think 2017 was a fog for  me.  With initial diagnosis, the the brain fog the prednisone gave me, rashes, thyroid - oh just everything.

I don't post often i just read.  I see Dr on 5/21 to get 5th petscan results. But he called and said everything looked good.  6 tumors including lung mass, pretty  much gone!  3rd brain MRI showed the two less than half inch dots still sthe same. 

I had to cancel my Paris Viking River cruise last Nov. BUT in two weeks going on a 10 day Alaska cruise r/t  San Francisco with 11 of my family on Grand Princess.  Thank you God!  I still get a LOT of fatigue, and having problems following thru on projects.  But feel better that months ago.  I have been to Alaska before so i am content being low key and watching scenery from balcony while youngsters do all the excursions i laready have done.  My children grandchildren have all taken off of work/college because of grandmas melanoma.  This trip was on my bucket list...every once in a while where I just don't feel good, I say "ok Lord, let me get thru this trip."

​The arthritis keeps me still, so i try to make myself walk the dog a llittle, even around a short block, or so gentle water aerobics when weather permits.

​I applaud you young people going thru this, and still raising children and holding down jobs.  God Bless you

Again, that you for sharing what you have been going thru...it helps the rest of us.

Happy Mothers Day!!

Sharon l

 

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kentuckycat's picture
Replies 3
Last reply 5/14/2018 - 5:57pm

Happy Mother's Day to all the mothers out there!

I am looking for opinions on treatment options and questions I should ask my oncologist before setting up a plan.  I was diagnosed stage 3C in 2013.  Was in a trial for ipi vs inteferon and got the ipi arm.  Completed the trial of 1 year of ipi at 3mg and then had intransit mets.  Surgically remved the mets and did watch and wait until 2016 got more intransit mets.  Started Keytruda and met kept growing so had it surgically removed, but continued Keytruda.  Had a total of 14 Keytruda infusions and developed severe knee swelling and stiffness as well as high liver counts so discontinued Keytruda and took steroids.  Have been stable since the surgery about 20 months ago.  Have not had any treatment for a year and been off steroids for 5 months.  

My latest scan showed an increase in the size of a lymph node in my abdomen from about 7mm to 21mm.  I will be getting it biopsied, but my oncologist already has me set up to meet with a surgeon as he is pretty sure this is a recurrence.  His initial thinking is surgically remove the lymph node and then start nivo.  The last tumor tested was braf positive.  My first question is assuming a positive node, should I have surgery or leave it in and see if treatment with shrink it?  I do think I likely need systemic treatment again, but which option? Should I get targeted treatment, go back on a pd-1 or go aggressive with ipi/nivo?  I am also currently researching clinical trials.  Any other thoughts?  Thanks in advance.    

 

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https://ecancer.org/news/13945-shooting-the-achilles-heel-of-drug-resist...

 

Interesting post about combatting resistance to braf treatment. If the link does not work (as my tech skills are sketchy) I found it on the ecancer website.

 

Mary

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lamurphy1968's picture
Replies 6
Last reply 5/14/2018 - 1:15am
Replies by: lamurphy1968, Raco, dessie

Hello everyone, yesterday I had two moles removed. One is close to my ear and resembles a squamous cell carcinoma the second one looks mean and angry. It's located on my abdomen. When the dermatologist looked at it he said it was definitely cause for concern and needed to come off. I now wait 2 weeks to get the pathology report back. It's going to be a long 2 weeks. I asked him if he thought the mean and angry mole was a bad one and his response was that sometimes he's wrong so he doesn't want to say one way or another. He wants to wait for the pathology report. However, he feels that it's something that is scary looking enough to get it off and feels as though we have caught it early. So nervous!

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Anonymous's picture
Anonymous
Replies 6
Last reply 5/13/2018 - 5:56pm
Replies by: bjeans, Sharon93065, kst, mary1233, Anonymous

  I would like to know if medicare pays for any type of immunotherapy drugs (opdivo/yervoy).  My  husband has plans to retire later this year but he will be without his health insurance. Now he is thinking this plan may not work.  He has to pay  $1,000.00  as a co-pay even with his insurance so I cannot imagine how much he would need to pay if he had no coverage. 

Thanks for any advice!

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obtu.bt's picture
Replies 5
Last reply 5/13/2018 - 4:20pm

Dear all,
Would you share your ideas and practice about your eating habits?
I used to consume about 1 bottle of whisky every week and use to eat biscuits and chocolate regularly.
After my operation on August 2017. I completly stop biscuits and chocolate.
Cut down the alcohol limit to 2glass of red wine per week.
Regular pills for vitamin D + curcumin.
Now I will start to add also selenium.

After CLND I had 4 doses of yervoy 3mg per kg and 26 séances of Radiotherapy.

Since regular control on the way and I have lost 14 kg. Awaiting your feedback & experience & critics

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daughter1's picture
Replies 4
Last reply 5/13/2018 - 4:03pm

Its not a good Mothers Day.  I am overwhelmed with sadness.   Mom rushed back to the hospital with pancreatitis flair up.   Seems as if that we conclude now that at this point she will flair up if she if prednisone because as she titrates off, she flairs up something fierce.  Dr. has already decided that she has to stop her Opdivo.  She was doing so well on it for almost a whole year and then this about 6 weeks ago we rushed her to the hospital for this pain.  Steroids help almost immediately.  But now what?  I am so scared and sad.   This is terrible.  I guess we will know more this week when she meets with a specialist.  Does anyone have any experience with this happening?  He won't put her on the Opdivo ever again will he?  What happens now?  

 

Robin

 

 

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Anonymous's picture
Anonymous
Replies 5
Last reply 5/13/2018 - 11:39am
Replies by: cancersnewnormal, Anonymous, MrG

Hey all, 

I have found it tough to find information online concerning this.

In Feburary I had a vulva biopsy come back with the results below:

​Severely Atypical Melanocytic Profileration. 
​Comment: This proliferation extends to the biopsy margin. A more aggressive lesion adjacent to the biopsy cannot be excluded. Complete excision is recommended. 

 

I was sent to a gynecologic oncologist. At my appointment I was schedued for surgery for an excision. One on the biopsy site and another area that was not biopsied a little further south where I have a cluster of 3 freckles. 

 

This just all seems like so much..Everything I read online makes this sound like you do not need an excision for aypical moles.

 

If you all could give me some advice that would much appreciatied! 

 

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For the first time, the word "melanoma" was said to me in January 2018 after a biopsy was done. I went on to do the WLE with later receiving results of clear margins. Knowing this helped me have a happier, calmer attitude. Then 2 days ago, the DecisionDX results came in - a class 2b! I've done plenty of googling since then and learning a lot, some of which I wish I didn't know. I'm wondering how much faith I (and the rest of us) should put into this DX test. Seems as though doctors out there want to use it religiously.

Roxanne

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JW's picture
Replies 1
Last reply 5/12/2018 - 6:54pm
Replies by: Coragirl

Just thought I'd post what's going on with my husband in case someone finds it helpful.

We went to MD Anderson, and our experience there was entirely different from the local oncologist and even from the melanoma specialist at UT Southwestern.  

The docs at MDA have current patients who have been living 5+ years with anal/rectal melanoma.  They have operated on 18 cases so far this year, and they were seeing two follow-up patients the same day were were there.  We definitely felt we were in much better hands.  They had a clear treatment plans, including plans for the various contingencies.

Since the PET/CT was inconclusive as to whether there was residual cancer, the surgeon did an exam under anethesia and found that there was in fact tumor present.  Due to the location of the tumor, it can not be removed without compromising bowel function.  

So, the plan is to use chemotherapy plus immunotherapy to shrink the tumor and then remove it.  Apparently mucosal melanoma does respond to chemo, unlike cutaneous melanoma.  They are using a combination of 3 chemo drugs and Keytruda.  Keytruda was initially denied by our insurance, but a phone call from the doctor got the denial overturned.

There will be 2 round of chemo, 3 weeks apart.  Each round will consist of 4-hour infusions 4 days in a row.

3 weeks after the second round, the surgeon will do another exam to determine if the tumor has shrunk enough.  He says 2 rounds is almost always enough in his experience.  Then there will be an MRI of the pelvis to help determine the specific plan of surgery.  Surgery will include removing the tumor plus as much margin as possible, as well as removing the sentinel lymph node and possibly additional lympth nodes.

After surgery, there will be radiation and then a year of Keytruda.  If Keytruda doesn't work or stops working, there will be testing for c-Kit mutation (the tumor has already tested BRAF negative).

I hope this info will be helpful to someone at some point.  

(Background:  my husband initially had surgery to remove what was supposed to be an anal polyp, but turned out to be 3 melanoma tumors.  The surgeon -- who was understandably not expecting melanoma -- removed all the tumor that he could see but was not able to get any kind of margin.  Local oncologist ordered PET/CT which showed activity that could be residual cancer or perhaps just post-surgical inflammation.  He recommended going back to the orginal surgeon to "take out whatever else looks like cancer."  What???  Melanoma specialist at UTSW recommended against that, of course.  There is a surgeon at UTSW who has some experience with this type of tumor, but we decided to go with the even more experienced docs at MDA.)

 

JW

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Ohio mom's picture
Replies 3
Last reply 5/12/2018 - 5:06pm

Hello,

First, thank again to all of you.  I hope that I can be of comfort and “some” knowledge to future posters as I begin to learn more about this cancer.

im sorry this is so, so long but I am hoping someone can help me get answers to all this verbiage.  A long weekend is hard to wait to try to get answers from the Dr.  so if anyone can help me-it would be greatly appreciated.  Compared to my first pathology report, this one has so much info and I know so little that it’s frustrating and scary.

As I stated, I had a shaved biopsy that came back as malignant melanoma-superficial melanoma of my upper arm-left anterior distal.  This was the report.

Breslow thickness-0.5mm

ulceration-not present

regression-not present

mitotic rate-<1 per mm2 (none present)

L/P/A/I-not identified

tumor infilitrating lympocytes-brisk

Associated melanoctytic nevus-not present

deep margin-involved

peripheal margin-involved

Stage-at least T1aNxMx

Next appointment was with a surgical onocologist for a deep punch biopsy and they state that I have caught it early and after I stated I thought I should have a sentinel node biopsy, he thought it was unnecessary.

i kept waiting for my test results.  And called the center, which is huge and busy and finally messaged them and found out my results were not in, but would go ahead with the wide excision surgery.

next appointment-one week and a few days later after punch biopsy, I am at the surgical center and the Dr had to call the pathologist for the results which they stated had no residual signs of melanoma present.

so I have the surgical procedure done and then the next day I ask for my pathology report and it states that this is what they have concluded from my FIRST biopsy, not the punch whole biopsy from the surgical onocologist.

this is from the slides of the shaved biopsy from the dermatologist and their interpretation.

if you could help me understand this before I meet with the surgical oncologist in 2 weeks, (I hope to talk to him sooner) I would greatly appreciate it.

microscopic examination:

Sections of specimen A show skin excised to include subcutaneous tissue.  Near the center of the specimen, Reyes are effaced with organizing granulation tissue and a patchy chronic inflammatory infiltrate in the underlying dermis.  Adjacent to this area, individual and nested atypical melanocytes are present at the dermal-epidermal junction.  Scattered atypical melanocytes are present above the basement membrane.  A prominent chronic inflamatory infiltrate is presentbin the dermis and makes identification of any possible invasive component to this lesion difficult on hematoxylinand eosin-stained sections.  Immunoperixidase staining for HMB-45 is positive for melanocytes at the dermal-epidermal junction, above the basement membrane and Fox ally in adnexal stuctures.  Rare HMB-45 positive cells are present in the superficial dermis.

Immunoperoxidase staining for Melan-A and Ki-67 was performed on a single slide cut from block A1.  Melan-A is positive for individual and nested melanocytes at the dermal-epidermal junction, above the basement membrane and in adnexal structures.  Some background staining is present in the dermis; however, a few melanocytes are present in the inflamed dermis.  Immunoperoxidase staining for Ki-67 is positive for the nuclei of basilar keratinocytes as an internal control.  Many of the Mela-A positive cells at the dermal-epidermal junction coexpress Ki-67.  Occasional Melan-A positive cells in the dermis also stain positive for Ki-67.

 

Synoptic report:

malignant melanoma

type-compatiable with superficial melanoma

breadth (diameter of lesion) not given

level of invadionClark’s level II-early III

depth of invasion-0.7mm

radial growth phase-not identified

mitotic count-0/mm2

regression-not identified

precursor lesion-not identified

Blood vessel, lymphatic and neural invasion-not identified.

tumor infiltrating lymphocytes: present; brisk

satellite nodule-not identified

margins- the in situ component of this lesion extends to the lateral specimen borders. Melanocytes in the dermis extend to within approximately 4.5mm from the biopsy base.

AJCC pT1a stage lesion

final evaluation of this lesion with respect to prognostic factors would require histology evaluation of the completely excised lesion.

complete excision of this lesion is recommended.

 

Thank you for taking the time to read this.  I don’t take your time and effort for granted.

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Anonymous's picture
Replies 1
Last reply 5/12/2018 - 1:06pm
Replies by: Janner

Hi

i am wondering if anyone can help me out here with their knowledge or experience. I started using tretinoin - prescription retin a at the start of march. Within the first week I developed a Papule of sorts that came up just under my collarbone near my shoulder right next to a liver spot I've had for a few years. 

 

I have an an appointment this week to see a GP that specialises in Dem who will refer me on if need be (im in the U.K. But grew up in Australia). The spot has been there for 8 weeks now as it appeared with no change. It is pink feels scaly especially after shower and about 5 mm. It literally appeared overnight and I noticed it straight away as I am vigilant with my skin. I waited the 4 weeks, its hasn't gone so made an appointment which brings me to this week(long waits uk). Being next to a liver spot I guess that makes it a sun damaged area of skin, as only other place I have liver spots are my legs. 

 

My initial thought is it is an actinic keratosis which the retain a has unmasked but now I am seriously freaking out that it instead an amelonitic melanoma and I've let it go for 8 weeks since it surfaced. I can't find much information on amelonitc melanoma online, it basically says there's no symptoms and it could just be that slight raised red splotch as that is how they present. 

Just to clarify there's no nodule it's a slightly raised papule, not itchy, not bleeding just causing me to cry every Time I look at my young children :(.

 

anyone have any insight or experience? 

 

Thankyou for your time

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aquamak's picture
Replies 6
Last reply 5/12/2018 - 7:44am

Hello my friends:

Just doing a little writing therapy here.  Today I went for a PET/CT scan and will get the results Friday morning from my doctor.  When, and if all is well, I will officially be 5 years NED from Stage 3C.  The problem is that today after the scan was done, they re-scanned my head and neck so my heart is raising.  I asked the technician afterwards and he said he was sorry to make me upset but they supposedly had to redo the CT and PET of the head because he said I must have moved and the images weren’t lining up.  He claims that is all but I am so nervous!!!  Anyone have a similar situation?

Mela-No-More

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BillB's picture
Replies 9
Last reply 5/12/2018 - 6:46am

Completed Keytruda infusion #14 today along with brain MRI, CT scans of the neck and body. Scan results were still clear. Scanxiety is reduced for another 3 months. I’m sure my wife will be happy about that as I understandably  get a little ornery at the end of the 3 month scan cycle. 

Tex raised the question from his post yesterday regarding how long do you go before stopping. Wish I could answer that question myself. This subject has been on my mind since January and reading some of the recent posts regarding progression just muddies the waters and my thought process. It was a subject of discussion I brought up with my oncologist today and hope the discussion helps others and stirs some additional discussion since we, and we alone have to make the final decision when to stop.

Today was my third set of clean scans (October 2017, January and May 2018 ) since I moved to stage IV in August 2017. My oncologist believes based on my initial complete response and her other patients records with Keytruda and stopping infusions that I can also stop. She is not pushing me to stop, but also doesn’t want me to develop any debilitating side effects from the treatment. So far I have just experienced some fatigue, joint pain in my hips hand, and shoulder. Nothing to deter me from pursuing my hobbies. But, she also doesn’t want it to get worse. There is some interesting reading regarding durable response on Keytruda after CR. It’s a follow up paper from clinical trial  Keynote 001. I’m  pretty sure I read the summaries on Celeste’s blog but I will try to give a link to the full paper. I have read it along with my sons and the data is positive. I also inquired about if I stopped the infusions in reference to Keynote 001 information, could I restart them if I progress. Her thought was she didn’t see why it wouldnt work again but did qualify that there is no 100% assurance with anything melanoma related. 

So after reading  the above referenced paper over and over, comparing my information against the information in the report,  I do feel that I could stop the infusions, but I just don’t have the confidence or the ........... to make the decision and stop yet. Working on that. I wish everyone else success, and the fortitude to make the right decisions.

http://ascopubs.org/doi/pdfdirect/10.1200/JCO.2017.75.6270

Bill

 

 

 

 

 

 

 

 

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