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.

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Hi Everyone.  My mom has mestatic melonoma in her liver and spleen.  MSK started her on Yervoy/Opdivo combo but after two doses, she was taken off due to her creatinine levels (forgive me if my spelling is incorrect.)   She then continued every two weeks with just the Opdivo and her scans are showing gradual decrease.  We are so happy that there are no new tumors and the ones that she has are slowly but surely shrinking.   Question:  My mother is complaining of horrible joint pain from her back down to her knees.  She has a difficult time getting up and literally had to stop and take a few breaks while walking to the car from the food store.   Have any of you experienced this?   The doctor seemed to be so happy with the scan results because she is responding so well.   I'm a nervous wreck and I feel badly that she is in pain. 

Robin 

 

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rabbits68's picture
Replies 2
Last reply 9/20/2017 - 3:35pm

I had my 2 month scan since starting the Clinical Trial at MSKCC. Yesterday's scan showed significant shrinkage in most of my tumors. This is my second run on the MEK combo with now added Phenformin to see if we can extend the time before resistance. I am so thankful for the reprieve as my pain level is decreased and I am off narcotics and enjoying life and praising the Lord for healing. I love Dr Shoushtari and the team at Sloan Kettering, they have worked hard for me. This trip was definitely worth it!

LisaG

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Anonymous's picture
Replies 5
Last reply 9/20/2017 - 3:10pm
Replies by: Janner, Anonymous, Julie in SoCal, Jamie1960

I have a Malignant melanoma,superficial spreading type, 0.33mm in depth on my back. Melanoma in situ involves the peripheral margin. My Dermatoligist is going to excise and send to Pathology. Why would'nt MOHS surgery be used instead? I asked during my consultation, and be basically said it wasnt the Standard of Care for this type, but everything I read seems to indicate MOHS, so I'm confused! 

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Anonymous's picture
Anonymous
Replies 2
Last reply 9/20/2017 - 11:59am
Replies by: KateMG, Jamie1960

Hello, I recently went to the doctor to have a mole removed and also have her look at a mole I am worried about. She looked at the mole and said she noticed it and that we need to just watch it. I am incredibly anxious and so I decided to make an appointment with a dermatologist however, my appointment isn't for another month and I'm trying to be patient but I'm nervous/scared. Here is a picture of my mole, I was just wondering if I could get some opinions about the look of it. Should I be worried? I have been having my husband look at it and take pictures of it and we haven't noticed any changes. Its small but its multicolored which is why I was concerned about it. I am fair skinned and had sunburns as a kid. I went to the tanning bed maybe 3 times when I was in high school. was also wondering what should I ask my dermatologist during my appoinment to make sure I am getting the most thourough exam. Thank you. 

-Kate

http://i.imgur.com/KqaYBOa.jpg

 

Nkmay

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Anonymous's picture
Anonymous
Replies 1
Last reply 9/20/2017 - 11:38am
Replies by: Anonymous

I had an xray of chest for cataract sergery in feb doctor said i had a couple of noduals in lugs a few months later a mole ive had stated to grow in size didnt think nothing of it later it started itching and bothering me had it shaved and found out it is melanoma also ive notice a black spot on my eye and looked at some pitchers of eye melanoma it looks similar im going for mri next week my question is can it metastasize that quickly please help

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Anonymous's picture
Anonymous
Replies 2
Last reply 9/20/2017 - 11:51am
Replies by: Jamie1960, 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 7
Last reply 9/20/2017 - 12:16pm

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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