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
Anonymous
Replies 1
Last reply 9/20/2017 - 8:21am
Replies by: Nemesis

Hi,

 

I was diagnosed today with melanoma after a biopsy.  I have to go next Monday and the Dermotologist is going to re-remove the melanoma that is, remove a larger area and deeper area and then stitch the incision.  I also have another suscipous spot that will be biopsed.  I am freaking out!  Any words of reassurance would be appreciated, please.

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Anonymous's picture
Anonymous
Replies 1
Last reply 9/20/2017 - 8:11am
Replies by: abby_mccann

I was diagnosed with a thin melanoma 7 years ago and a in situ 1.5 years ago.  I'v also had multiple normal and dysplactic nevi biopsied throughout the years.

I recently moved 70 miles from my orignal derm who found these 2 issues. However, I still see a leading San Francisco melanoma specialist (ex head of UCSF Melanoma clinic) 2x per year who recently suggested I get an "ugly duckling" mole removed. He further said it was fine to have a derm in the North Bay do the proceedure.

This new dern removed my mole via "shave" biopsy.  I was not made aware of this before she did it and I did not think to ask her or watch her.  It came back as a slighly dysplastic nevi and now I have to have a full excision and pay AGAIN for both the derm surgery (partially covered by insurance) and for the UCSF pathology (NOT covered by my insurance and $350 each time).

Questions for this group:

- A shave biopsy for someone with my history seems odd and irresponsible. Thoughts on this?

- Anyone know of a good melanoma derm anywhere between Santa Rosa and Marin (Northern Cal).

Thank you!

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Hi All,

Has anyone found a great method for finding a Melanoma primary? I am currently diagnosed as having an unknown primary which is believed to have been on my head by my ear but was beaten by my immune system. However, my recent recurrence by the same ear has me wondering if I have a primary which is just disguised or covered by skin (for example if maybe I picked at it long ago and in the resulting skin healing, it covered the Melanoma). I don't show any spots on a PET scan but I'm concerned that they don't do too well with finding Melanoma on the head because of the background brain activity. At this point my plan is to shave the side of my head (it will grow back to my normal length within 6weeks) and ask two different dermatologists to do their best at finding something. If nothing is found then I'll go back to believing my primary is gone rather than hidden.

Danny

Diagnosed Jan 2017 (stage 3b with unknown primary). Radical neck dissection Feb 2017 (4 positive nodes in level 5A). Ipi started Mar 2017 - ended May 2017 (Hypophysitis), recurrence Sep 2017 (node by ear)

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MovingOn's picture
Replies 7
Last reply 9/20/2017 - 12:22am

Hi All,

I'm going into round 2 against Mel (recurrence 6 months following surgery+Ipi).

This lymph node is right up against my skin and sitting on the mastoid bone behind my ear. I have a great Mel. Oncologist and she has presented the options of TVEC+Keytruda or surgery+Keytruda.

Is there a reason why I wouldn't choose TVEC? (Does TVEC have a high efficacy rate? Does TVEC have significant side effects?)

thank you all for your insights.

 Danny

Diagnosed Jan 2017 (stage 3b with unknown primary). Radical neck dissection Feb 2017 (4 positive nodes in level 5A). Ipi started Mar 2017 - ended May 2017 (Hypophysitis), recurrence Sep 2017 (node by ear)

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Sharon93065's picture
Replies 6
Last reply 9/20/2017 - 1:56am

I went today to get my Petscan results, worrying about the 6 tumors in my body and wondering what further treatments I would have.  Currently my liver panel is high and I am on Prednisone 100mg a day.
In a nutshell: I typed this with the highlights of the actual report.
I have a Praise Report: Since cancer cells are metabolically more active, they use more glucose (and FDG) and "light up" on the scan as abnormal activity. FDG shows the tumors. 
Chest: subcentimeter lymph node is LESS PROMINENT IN SIZE. . Previously noted intense FDG activity in left paraoesophageal lymph node IS NO LONGER CLEARLY VISUALIZED without any focal abnormal FDG activity noted.
There is centrilobular emphysematous changes noted.  The Irregular opacity in the medial proximal left lower lobe with focal intense FDG activity is nearly RESOLVED WITHOUT ANY ABNORMAL FDG ACTIVITY.
The irregular opacity in the medial proximal left lower lobe with focal intense FDG activity IS NEARLY RESOLVED WITHOUT ANY ABNORMAL FDG  ACTIVITY.  There is residual pleural-based nodularity in the left lower lung base measuring 1.5 x 2.0cm with faint FDG activity PREVIOUSLY measuring approx. 2.9 X 2.4 CM.
The previously noted right anterior mesenteric nodule, peripancreatic lymph node, and right anterior pelvis along the anterior abdominal wall ARE NO LONGER VISUALIZED. 
Large focus in the right paraspinal mass within the erector spinae muscle is NO LONGER MEASURABLE WITH FAINT RESIDUAL ACTIVITY of 1.6, previously with intense activity measuring 5/2 X 3.4cm.
THERE IS MARKEDLY FAVORABLE RESPONSE TO INTERVAL THERAPY WITH POSSIBLY MINIMAL RESIDUAL ACTIVE MALIGNANCY REMAINING!!!!
Dr. said now the priority is to get my liver numbers normal.  They have stayed high over a week now.  Then let my body get to normal.  Another Petscan in a couple of months.  And my daughter who has the memory said he said I would not need to start on any Opdivo maintenance unless there was a change!!  Thank you God!
Sharon
 

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Anonymous's picture
Anonymous
Replies 5
Last reply 9/19/2017 - 7:13pm

So I'm at about witts end with my derm. I think he's nice and has credentials, but getting anything removed is a battle. I've had many moles removed. The worst one was severly atypical. None have come back with no atypica, and my mother had melanoma. But he treats me like such a hypocondriac. I had a mole on my leg that's getting smaller and lighter, pretty quickly too, but he wouldn't even look at it with his dermascope. I'm getting a second opinion on that one in two weeks.

I have a large cafe-au-lait birthmark on my lower stomach. Since I was very young, like 2 years old, there was something that looked very similar on my wrist, right on the bone. It's was a flat, yellowish tan sploch that's see-though. But I noticed the other month it has faded to almost nothing. The derm said basically "too bad, so sad." He said if it's bad I'll just have to wait for a lump under my arm or something to show melanoma. He said it can't be biopsied or graded because it's almost gone. I can still see it in some lights, so it's not completely gone.

Should I insist this is taken off? Or should I trust it's a cafe-au-lait birthmark? Is that something a lab could even determine?

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mary1233's picture
Replies 1
Last reply 9/18/2017 - 9:26pm
Replies by: Toby0987

I almost feel like I have no right to complain. I am almost five years post surgery and my physician suggested that I can discontinue the followup scans. I am terrified. The scans provide me assurance that I will catch any recurrence in time to take advantage of the advances in treatment and, at least, provide me with the chance to fight a recurrence successfully. If I have no idea that the cancer has returned how do I fight it?

How do others of you deal with this?

Thanks.

Mary

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Anonymous's picture
Anonymous
Replies 3
Last reply 9/18/2017 - 4:06pm
Replies by: JuTMSY4, Anonymous

I'm stage four and have been on anti-pd-1 for about a year now with quite abut of success. My last scan, about 3 months ago, showed steatosis (fatty liver) on my scans, although liver function tests were normal. Has anyone here had this problem? When, if ever, is it grounds for discontinuing therapy?

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Sharon93065's picture
Replies 3
Last reply 9/17/2017 - 11:58am

I had Dermatologist visit  yesterday.  Followup from several months ago when i went to get a topical steroid cream for the rashes/hives I was getting.  I had taken a photo of my naked chubby body that showed how my entire side i slept in was broke out.  I would wake up at 1:30am totally covered in hives on the side of my body that my slept on.  My nightgown was 60%cotton, 40% polyester.  I went thru a period where the elastic in my underwear, anything not pure cotton when make me break out, mostly in the middle of the night.  So he gave me the diagnosis of pressure urticaria hives. I  Ihad other rashes also.  Thanks for the advise from others in this forum i was using Aveena cream for ezcema which has colodial oatmeal in it, aloe vera, you name it I was using it.  My scalp itched terribly.  I started with a benadryl, which knocked me out, then went to allegra, which was my salvation.  If i forgot to take one in the am, watch  out at 1:30am.  Trouble is, it was a 24 hr dosage and i think that was not good fo rmy liver.  So i bought the 12 hour. But haven't been able to try it out yet. My liver panel numbers went way up and i didn't get to have my 4th Opdivo/Yervoy and i cannot get the Opdivo Maintenance until that improves. I have drug induced Hepatitis D.  It was improving then started to rise again so i am now back up to 100mg a day of Prednisone and of course NO RASHES and can wear all the polyester and elastic I want, no itching.  Monday i go in to see what the latest Petscan that i just had shows.  I am nervous.  I am so tired all the time, insomia, and  just don't feel good. It also looks like i have white spots on the back of my hand Vitaligo.  I was upset when I first saw it.  Someone else on the forum said his oncologist said that means the immunotherapy was working.  My dermatologist agreed and explained how the treatment was working on melanin on our skin, I can't remember everything he said.  

Question please.  How long does the Opdivo/Yervoy keep working in our bodies until we can get he Opdivo Maintenance and Target Therapy?  

 

 

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I had Dermatologist visit  yesterday.  Followup from several months ago when i went to get a topical steroid cream for the rashes/hives I was getting.  I had taken a photo of my naked chubby body that showed how my entire side i slept in was broke out.  I would wake up at 1:30am totally covered in hives on the side of my body that my slept on.  My nightgown was 60%cotton, 40% polyester.  I went thru a period where the elastic in my underwear, anything not pure cotton when make me break out, mostly in the middle of the night.  So he gave me the diagnosis of pressure urticaria hives. I  Ihad other rashes also.  Thanks for the advise from others in this forum i was using Aveena cream for ezcema which has colodial oatmeal in it, aloe vera, you name it I was using it.  My scalp itched terribly.  I started with a benadryl, which knocked me out, then went to allegra, which was my salvation.  If i forgot to take one in the am, watch  out at 1:30am.  Trouble is, it was a 24 hr dosage and i think that was not good fo rmy liver.  So i bought the 12 hour. But haven't been able to try it out yet. My liver panel numbers went way up and i didn't get to have my 4th Opdivo/Yervoy and i cannot get the Opdivo Maintenance until that improves. I have drug induced Hepatitis D.  It was improving then started to rise again so i am now back up to 100mg a day of Prednisone and of course NO RASHES and can wear all the polyester and elastic I want, no itching.  Monday i go in to see what the latest Petscan that i just had shows.  I am nervous.  I am so tired all the time, insomia, and  just don't feel good. It also looks like i have white spots on the back of my hand Vitaligo.  I was upset when I first saw it.  Someone else on the forum said his oncologist said that means the immunotherapy was working.  My dermatologist agreed and explained how the treatment was working on melanin on our skin, I can't remember everything he said.  

Question please.  How long does the Opdivo/Yervoy keep working in our bodies until we can get he Opdivo Maintenance and Target Therapy?  

 

 

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I had Dermatologist visit  yesterday.  Followup from several months ago when i went to get a topical steroid cream for the rashes/hives I was getting.  I had taken a photo of my naked chubby body that showed how my entire side i slept in was broke out.  I would wake up at 1:30am totally covered in hives on the side of my body that my slept on.  My nightgown was 60%cotton, 40% polyester.  I went thru a period where the elastic in my underwear, anything not pure cotton when make me break out, mostly in the middle of the night.  So he gave me the diagnosis of pressure urticaria hives. I  Ihad other rashes also.  Thanks for the advise from others in this forum i was using Aveena cream for ezcema which has colodial oatmeal in it, aloe vera, you name it I was using it.  My scalp itched terribly.  I started with a benadryl, which knocked me out, then went to allegra, which was my salvation.  If i forgot to take one in the am, watch  out at 1:30am.  Trouble is, it was a 24 hr dosage and i think that was not good fo rmy liver.  So i bought the 12 hour. But haven't been able to try it out yet. My liver panel numbers went way up and i didn't get to have my 4th Opdivo/Yervoy and i cannot get the Opdivo Maintenance until that improves. I have drug induced Hepatitis D.  It was improving then started to rise again so i am now back up to 100mg a day of Prednisone and of course NO RASHES and can wear all the polyester and elastic I want, no itching.  Monday i go in to see what the latest Petscan that i just had shows.  I am nervous.  I am so tired all the time, insomia, and  just don't feel good. It also looks like i have white spots on the back of my hand Vitaligo.  I was upset when I first saw it.  Someone else on the forum said his oncologist said that means the immunotherapy was working.  My dermatologist agreed and explained how the treatment was working on melanin on our skin, I can't remember everything he said.  

Question please.  How long does the Opdivo/Yervoy keep working in our bodies until we can get he Opdivo Maintenance and Target Therapy?  

 

 

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Jewel's picture
Replies 5
Last reply 9/18/2017 - 4:09pm
Replies by: JuTMSY4, Anonymous, Jewel, Bubbles

You always expect the ball to drop when you have stage 4 melanoma. My husband did Yervoy 11/14 to 2/15 and since then has remained melanoma free. You start to breathe easier, and your first thought isn't cancer. On his last scan Dr noted a mass in his bladder...we just found out he now has Stage 1 bladder cancer. I know they say that life will only give you what you can handle, but now I'm just crushed. I can sense my husband is depressed and I just hope we can both snap out of this funk. We are both fighters and I know we will face this like we face melanoma....in it to win it....but boy this is tough. Thanks for listening.

Jewel

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Dwilkinson's picture
Replies 4
Last reply 9/18/2017 - 4:19am

I had a wide excision on 8/28 for probable Melanoma and my path results are taking forever to come back. I took it upon myself to call the pathology department on Thursday and they told me my sample went to Mayo Clinic. 

I called Mayo Friday and they told me my sample is getting cytogenetic testing done and a melanoma FISH. I did google both those tests but I'm still confused. 

Has anyone had a similar situation?

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jc2dad's picture
Replies 9
Last reply 9/19/2017 - 11:48am

Working diagnosis of MS in 2006. Onco at MD Anderson thinks too big of a risk to get IPI and precludes me from any trials. Rejected Sylatron so in wait and see mode. Does not make me feel "warm and fuzzy" just doing nothing. Being very aggressive with scans every 2 months and blood work monthly. No CLND going to do ultrasound every few months on nodes.

Anyone have any advice. Praying I'm one of those rare individuals that never progress.

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thinkingofu's picture
Replies 2
Last reply 9/15/2017 - 12:51pm

Hello everyone

Hope this message finds you well

Thank you for your support and kind words. For both me and my mom. 

So, she had her brain CT scan and it seems that her mets have slightly increased in size (a couple of mm each) . She had her first yervoy+opdivo infusion around almost 2 weeks ago. 

I have read here that mets increase before they go down on the abovementioned combo. Is this correct? Is this what happen in your experience? 

Thank you again xxx

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