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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Anonymous's picture
Replies 3
Last reply 11/15/2017 - 10:16am
Replies by: cancersnewnormal, Anonymous

Just curious here as I make treatment decisions in my mind. I’ve heard the stories of fast progression after Braf therapy, and have had a relatively slow moving cancer to date.

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Anonymous's picture
Anonymous
Replies 1
Last reply 11/15/2017 - 10:14am
Replies by: cancersnewnormal

Hi,

I am a 30yo with a history of BCC at age 20.  Over the past six months, I noticed a mole changing (becoming raised and it was occasionally itchy).  It looked different than other lesions on my arm.  My doctor agreed that since I have a lot of freckles/moles that don't bother me, it made sense to get this one removed if it was bothering me.  I just received a preliminary pathology report and the findings are unclear.  Apparently the case is being reviewed by several consultant dermatopathologists to come up with a consensus.  I have to wait at least three weeks to review the final pathology and my surgeon isn't even sure it will be ready at that point.  I am driving myself crazy trying to figure out what features in the report are concerning and what features are reassuring.  Can anyone help provide some insight?  The report is as follows:

 

Left Arm: ATYPICAL MELANOCYTIC PROLIFERATION - PRELIMINARY REPORT ONLT

Sections show an ellipse of skin with an intradermal melanocytic proliferation composed of epithelioid melanocytes with vesicular nuclei and prominent nucleoid.  The melanocytes possess abundant pale slightly pigmented cytoplasm.  They are predominantly arranged as nests with occasional single cells in the dermis with a periadnexal growth pattern.  Maturation with descent is lacking.  A perivascular and interstitial lymphohistiocytic inflammatory infiltrate with melanophages is present.  The melanocytic proliferation appears completely excised within the planes of sections examined.  The histopathologic findings are unusual and although the lesion may represent an intradermal Spitz nevus, the case will be reviewed by other consultant dermatopathologists in order to obtain a consensus opinion.  An addendum report will follow.

 

Is it pretty common to have a preliminary report issued and then have some consultation?  (i.e. am I worrying for nothing because this happens all the time).  Or is there a real chance there could be a bad outcome here?

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Elaine Block's picture
Replies 2
Last reply 11/15/2017 - 12:13am
Replies by: Nashvillian, Bubbles

Has anyone had any success in getting Medicare to pay for Opdivo for Stage IIIC?  

My husband, David, had a melanoma removed from his back in May -- SNLB came back clean.  Then in July he had a newly discovered metastatic melanoma that was in transit to the lymph node removed from his back.  

He was scheduled to begin the ipi/nivo/nivo+ipi trial in the end of September, (just within the 10 week time limit) when our onc seemed to warn him off the trial. He was concerned that David might be randomized into the Ipi only arm and I think that, especially in light of the results of the most recent study finding Nivo superior to Ipi, he wanted us to consider waiting until Nivo was approved for Stage III melanoma, which he thought would be imminent.  

I understand that Nivo has now been added to the NCCN protocol for Stage III melanoma, but hasn't yet received FDA approval for Stage III -- we're assuming (as are the finance folks at Georgetown Lombardi) that Medicare won't pay for Nivo for Stage III until the FDA approves it.  In looking through posts here, though, I've read about a couple of people getting insurance coverage for Stage III and wondered if anyone has been able to get Medicare to pay for it.We are very uncomfortable not to be getting any adjuvant treatment.

Thanks,

 

Elaine

Husband, David, diagnosed 5/2017, stage 3C

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MLWHIT's picture
Replies 10
Last reply 11/14/2017 - 10:51pm

I have stage three and it was found in the lymph node after sentinel node biopsy.  Still waiting on some further scans for validation that it hasn’t metastasized to other areas of my body. I will consult for first time re immunotherapy on Wednesday.  I discussed removing remaining lymph nodes vs taking a wait and see approach.  Due to the fact that these lymph nodes are in my groin area I am worried about the impact on mobility and likelihood of swelling in my right leg.  I am leaning towards the wait and see approach but wonder if I am missing something.  I have young sons and am thinking about the immediate participation in their daily lives, but scared that I may be making a decision that could impact my lifespan.  

Thank you for any insights  

 

MLWHIT

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KMick's picture
Replies 5
Last reply 11/14/2017 - 10:50pm
Replies by: KMick, Momofjake, BrianP

Anyone heard news regarding Jake?  I think of him often and hope and pray for the best.

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wmpado's picture
Replies 10
Last reply 11/14/2017 - 9:34pm

Hi my name is Wendy, I am a 45 yr old married mom to 4daughters who was diagnosed in August of 2017, with stage 3 melanoma on my left leg.  On November 2nd I had surgery to remove the rest of the tumor and the affected lymph nodes, also had a skin graft for the tumor site.  I just found out that 2 of the 3 lymph nodes they removed from my groin were malignant.....so now I go to my Drs next week to discuss what's next.  Needless to say I'm nervous, but am also looking for questions or things I should bring up to my surgeon.  I'm an going to ask about a PET scan and recommendations on oncologists, and what's the advantages to surgery vs the ultrasound testing every 3 months.  Just trying to be as informed as possible.  

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jetdoctor67's picture
Replies 6
Last reply 11/14/2017 - 3:55pm
Replies by: jetdoctor67, J.bun, cancersnewnormal, Anonymous, Janner, doragsda

Hello All,

I was recently diagnosed (Sept 8, 2017) with nodular melanoma on my left ear (size 0.4cm, depth .6mm) from the dermatology pathology report. I had a WLE and SNLB on Oct 25, 2017 where 10 lymph nodes were removed.  I received the pathology report which said the tumor was actually 1.5mm deep.  The good news is that no traces of metastases was identified in any lymph nodes.  My final pathologic staging is (pTNM) pT2a,N0.  My doctor (plastic surgeon) has not recommended any further treatment or scans.  My question is should I request or see an oncologist and/or request a chest x-ray and CT scan if for no other purpose to have a baseline if more melanoma is diagnosed in the future.  I welcome any suggestions or comments.

Thank you all,

Terry

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Newmanbell's picture
Replies 1
Last reply 11/14/2017 - 3:48pm
Replies by: Anonymous

What a morning it was for us.  Our Oncologist in Syracuse set up the appointment for us to meet with Stephen Hodi (the 2nd time) to see about future treatments and recommendations.  You all know the anxiety about such an important meeting, in addition to taking two days off of work to drive the 5 hours there and back the next day.  When we arrived, Dr. Hodi greeted us nicely but he was never sent a thing from our Oncologist.  No records, zero which included the recent MRI this past week.  He could not advise us whatsoever.  Talk about us being very upset.  We clearly had Stephen Hodi listed at our home office to be sent information.  In the end we did get the MRI report, thanks to a very efficient administrative assistant, and he was able to tell us the spot on the liver is nothing to worry about and he is present NED (he is stage 3B).  He was truly a doll spending such an amount of time with us when he really didn't have the data he needed.  Believe me we had some calls today to our doctor's office.  This can never happen again.   We just drove home from Boston, it is 3:40 in the afternoon, and already I am in pj's in bed.  The roller coaster just did us in.  What should of been a very positive meeting, turned into a stressful morning.  Stuff like this should not happen.

 

But, in the end NED for another 3 months.... relax and enjoy those words, right?

Donna

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Honeysmom's picture
Replies 6
Last reply 11/14/2017 - 3:23pm

I had mole removed from back area near butt. I had several surgeries and came out cancer free about seven months ago. Cancer came back on left leg theigh, hip, and butt area close to original surgery site.
I have completed five radiation treatments and have severe leg swelling.
I am to start combo immunotherapy drugs soon and are freaking out on side effects.
I wonder if I will loose my hair with this medication.

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Spl25's picture
Replies 7
Last reply 11/14/2017 - 2:13pm

Really looking for some positive news regarding mets on my pelvis and femur. I'm stage 4. They're very painful and don't appear to be responding like my other tumors to PD-1. Has anyone had a response on BRAFi or any other intervention? This is truly disappointing and the pain is keeping me from working and enjoying life as much as I'd otherwise be able to. 

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Anonymous's picture
Anonymous
Replies 4
Last reply 11/14/2017 - 1:22pm
Replies by: keepthefaith11, Anonymous, Bubbles

I am very afraid and not ready to give up on my mom she is 62 yrs old . She has been fighting Melenoma for about 5 yrs .  This past September it reached level IV.  She also has acute leukaemia believed to be caused by radiation .   She has mets in her brain which were stabilized by radiation .  She also has two enlarged nodes on her chest and mets in her lung and liver .  She started Keytruda 6 weeks ago and it helped her leukaemia significantly .  The melanoma however does not seem to be responding .  One met in her liver in particular seems to be growing (I believe it is 16 cm).   She has stayed on Dexamethsone to ensure the swelling of the brain mets went down .  This has caused awful side effects , weakness , steroid induced diabetes, and focal seizures .  She is now in hospital with pneumonia and a fungal infection and her blood levels have dropped again .   Sisnce this has happened she has made significant progress over the last 4 days .  She was pretty much sleeping most of the time and she can now eat a meal and sit on the side of the bed comfortably.  He oncologist doesn’t believe that the therapy is working and wants to turn to palliative Care .   I’m determined to not give up on her and believe after 2 rounds of Keytruda it’s too early to tell .    Can anyone give any words of wisdom ? 

 

Thank you 

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Anonymous's picture
Anonymous
Replies 0

I am leaving this forum and hopefully for good. My concern started 1 month back with my moles. I noticed one being a bit odd in the shower and freaked out a little. Naturally for me i started googling (bad choice as most will tell you). I had several sleepless nights and started loosing weight due to pure anxiety. I felt somehiw how i was going to die. I consulted two nurses, one specialised in moles of which bith told me not to worry and watch for change and the one specialised in moles referred me to a dermatologist. During the time (1 month) that i had to wait for the appointment my life was pure misery (not exaggerating). I didn't eat i didn't sleep all i got some comfort out of was googling my symptoms. I had convinced myself i was dying. Any sign of cancer git me thinking about it. But then somewhere along the line i realised how pointless worrying was and if i indeed was going to die i needed to appreciate life to it's fullest, And that is what i did. I enjoyed much great time with my family and friends and noticed the beautiful aspects of life. Yesterday the time finally came my appointment and in short: Nothing wrong. Like 100 kilograms falling off my shoulders. I didn't have cancer i wasn't going to die! But this post isn't about that. This post if for all of you on here. Wether batteling cancer yourselves or having someone close to you having melamoma. Remember to enjoy life to it's fullest no matter if you have 60 years or 60 days left of it cause one day we will all die and no one deserves to die regretting a single thing in their life. So instead of worrying do what makes you happy, do not let cancer beat you down. I am only 17 years old and hope to live another 70 good years and if i some day receive a cancer diagnosis i will fight it, and i will keep fighting until they throw dirt upon my hands and i hope you all can do the same and win your battles.

Thank you and goodbye.

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HI All , I got my TILS ((74 B) on Nov.6  and was discharged yesterday after a week of chemo and 1 week of low dose IL2.  I had no issues except some fatigue. I will start pembro on nov. 28. Have others done the TILS therapy followed by pembro?  Thanks again to Ed Williams for his encouragement, amazing support. 

David

David, ( Stage 4, mets lung, liver, brain)

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Sharon93065's picture
Replies 6
Last reply 11/13/2017 - 11:20pm

Jan 2017 i booked a Viking River Cruise $2600 round trip air from LAX, and 8 nights. I canceled in Aug when my liver panel was high and my 4th treatment canceled.  I was able to cancel one day before i would have lost another $500, i use lost $389 as i didn't get the insurance.  So  my group of 8 ladies leaves today.  And I am more relieved than sad.  I would have been so worried the last few months as to how i would feel on the trip.  My arthritis has flared up.   I had breathing problems a month a go and spent two night in hospital. They ran all kinds of tests and ruled out pneumnonia, clots, etc.  I couldn't breath and the pain even with morphine was horrible, never did get a diagnosis for that one.  Had to stop to 'catch  my breath' for a week.

I need to exercise but too tired, but wouldn't be tired if i exericised right?  

My newest liver panel came back normal witht he help of down to 40mg of Prednisone.  BUT Dr called to say my creatinine was too high, and also my postassium.  And drink a lot of water, get my blood retested in two days. I go see  him Friday.  I don't know what  did to have those high numbers.  I am googling liver diets and looking at sodium content on everything.  Since i have hepatitius D from Immunotherapy.  And have to take 100mg of thyroid each morningn now.  Amazing how many things i thought were healthy i cannot have, like mayo...my  unsweetened vanilla almond milk high in soudium.

Anyways, i will go say goodbye to my 'Paris' friend this morning.  I couldn't eat all the food on the trip or drink all the beer/wine that comes with the  cruise and that would not have been fun at all............

Sharon from Simi Valley, CA 

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JeffinSeattle's picture
Replies 3
Last reply 11/12/2017 - 9:56pm

My wife had a lung biopsy last Thursday, our Doc said we should have results today. When we met with him a couple weeks ago and he told us about the lung nodule that was concerning him he gave us three options for next steps. One of them was a trial with Nivo and an oral compound called CB-839. We thought that sounded good and signed the paperwork to potentialy be in the trial.

On Friday, the insurance company called to say they were onboard with the trial. So that was good news. This week, the trial coordinator has called a couple times to set up various appointments.

We still haven't heard from the doctor about the biopsy results, but should we assume that since the trial coordinator is moving forward, that this nodule was indeed melanoma? Or, are they just getting everything ready to go just in case?

Question #2. She had a clean lung scan in July, before starting Pembro. Now, after 4 or 5 doses of Keytruda this thing appears. I'm assumoing that means Pembro isn't working for her. If Pembro doesn't work, does it make sense to try Nivo, which is the same type of drug? I can't find any data showing that if one fails, the other might work.

My wife is (was) stage 3c. She had a CLND in May of this year.

Thanks for any insight.

 

Jeff

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