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 2
Last reply 1/25/2016 - 10:54pm
Replies by: ldub, Anonymous

Hi 

my Dermo successfully removed 2 melanomas last year . I have not had any diagnosed before . She says I only need to see her once a year for check ups / mole mapping . 

As melanoma is life threatening I am concerned that is not enough ? My back has hundreds of moles.

Also , she doesn't take photos of my back so she is not able to compare mole changes over time , surely that needs to be done ?

Thanks 

 

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grahamtosh's picture
Replies 10
Last reply 1/31/2016 - 12:50am
Replies by: grahamtosh, Janner, Anonymous, WithinMySkin

Hi 

hope there's a qualified person that can very kindly advise 

I had 2 melanomas removed last year. So now am wary  and listen to the doc but not too sure  . I have a back covered in what look like atypical Nevi. Dermo has done mole mapping and says she wants to excise  17 atypical moles with margins , from my back . ( they will of course then go for biopsy ). Mainly due to diameter but some smaller ones also due to my age 46 . 

Do I need all 17 excised ? Is this a worthwhile precaution ?

thanks for your advice .

 

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specka's picture
Replies 7
Last reply 1/26/2016 - 3:17pm

My husband is very sore. His ankles are extremely painful. He's 30 and says he feels like he's 90. I gave him a foot massage, that seemed to help a little. Any other suggestions? He isn't a pain killer kind of guy.

Rebekah

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Rocco's picture
Replies 9
Last reply 1/25/2016 - 10:09pm

Just had my annual visit to DFCI in Boston.  Annual CT (chest/abdomen/pelvis)  and  MRI  (brain) were clear!   Blessed to still be here.  Still praying daily, working and living life.  Prayers and good vibes to all dealing with melanoma.  

-Rocco, Stage IV in 2005, NED in 2009, Ipi 10mg/kg responder.   

Luke 1:37

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Stlmag's picture
Replies 7
Last reply 1/23/2016 - 4:13pm
Replies by: btcedarr, WithinMySkin, Anonymous, Stlmag, jamieth29

Timeline of my husband's melanoma journey:

10/13/15  Diagnosed with amelanotic melanoma, Stage 2B

10/14/15  CT chest lungs clear

10/19/15 Sentinel node & wide excision. Stage 3C

                 8 mm deep, BRAF, wild type, 4 of 5 axillary lymph nodes pos/removed

10/30/15 first oncology visit.."it has prob mets to your brain; you need to go to Vanderbilt"

11/09/15 MRI brain clear

11/12/15 PET scan clear

11/16/15 Vanderbilt visit; offerred Yervoy/Interferon trial

11/18/15 Made appt @ MD Anderson

11/20/15 2nd oncology visit. Yervoy approved 10/28/15 for Stage 3. Will begin that.

12/09/15 First Yervoy tx. Cancelled MDA appt

12/30/15 No more Yervoy due to Grade 3 derm reaction

01/19/16 Melanoma lesion reocurrs in surgical scar; biospsy

01/22/16 Biopsey results confirm- lesion is melanoma

 

 

 

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Anonymous's picture
Anonymous
Replies 7
Last reply 1/23/2016 - 5:52pm

The short of it.. Husband is Stage IV, been on opdivo for almost 6 treatments of 12.  Constant stomach problems,  coughing and that is increasing in severity.  Now persistant pain under his ribs, and in the kidney areas.  He's lost over 20lbs since treatments have started.  He's cranky (justified) and lethargic.  Positive attitude is deminishing.  Personality and memory issues.  We had a PET scan and MRI on his brain done recently and will get results on this coming Tuesday. 

Draining watching him decline.  I need a break but afraid to leave his side for a minute.  I dont know what he needs from me to support him, sometimes I think Im more of a pain for him.  He doesnt leave his room much.

We're both going through our own hell in different ways with this. 

Im tired, scared, angry and would love to escape for a few days.  Not possible.

Thank you for letting me vent. 

R

 

Bin

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Anonymous's picture
Anonymous
Replies 2
Last reply 1/21/2016 - 10:47pm
Replies by: sayres, Janner

I had an mole that was close to melanoma removed through a wide excision. (I know nothing like what you guys are dealing with and I am so sorry for you!). Stitches out...for 2 weeks now. It itches. Is that normal??

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wildpoppy's picture
Replies 5
Last reply 1/24/2016 - 2:16pm

Hello everyone..

I am newbie... Looking for some advice...

I have what I was told was a sebhorric keratosis under my breast... I saw my GP (UK)... who told me so, and a dermatoloigist who also told me the same.

I haven't given it another thought until recently (this was about 4 years ago)... until the area around the keratosis started itching...

Fast forward 3 weeks... The itching has subsided (though not completely gone)... but more alarmingly, there is a black patch appearing that wasn't there previously...

I have been searching for information as to whether sebhorric keratosis can can colour to black, but all I see is likely melanoma...

I have an appointment booked with a dermatologist in a week, but I am honestly shaking lwith fear with worry... My research is taking me down dark alleys on Google... with zero info on SK turning black/changing colour. Could it be that the doctors misdiagnosed what it was back then?

Can a sebhorric keratosis turn cancerous?

 

Any advice greatly appreciated, I'm not sleeping well.

Thanking you and wishing everyone wonderful healing

Kimmy

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Polymath's picture
Replies 8
Last reply 1/23/2016 - 11:18am

I have had a real tough case.  After initial treatment with Zelboraf, which worked temporarily, but delivered every single side-effect in the book, and some, it has been all downhill since.  Two years of following the standard of care with all the FDA approved drug therapies, and a clinical trial thrown in when FDA options were exhausted,  All unable to stop progression (perhaps some slowed it down) I finally was able to join the many on the Ipi/Nivo combo once it was FDA approved and am currently on it.  One of my issues is my tumors grow very large.  Internal, and subcutaneous typically grow to 8-9cm in size, and sub-q tumors this size can be painful, and definitely disfiguring as they bulge right clothing.  Last year I treated one large sub-q tumor on my back because it was causing so many problems and discomfort.  After a short,(5-times) but very powerful treatment regime, I remained frustrated at the slow pace of effectiveness.  It took about 10-weeks before I started to notice the tumor shrink, and after a couple more months the tumor was 90% smaller and no longer caused any problems.  Now while on immunotherapy I have had radiation again, on two large tumors near my clavicle, and may be benefiting from the so-called "triple threat" whereby radiation added to the Ipi/Nivo combo seems to have an added benefit to the effectiveness of the combo.

So finally my question.  Right now the one easiest to measure sub-q tumor which was radiation treated has begun to shrink rather rapidly.  While I am thrilled that perhaps drug therapy is finally working, there's this little gnawing voice in me that says maybe this rapid shrinkage is a result of the radiation, rather than a systemic response to the drugs.  My radiation oncologist says that this rapid shrinking which started immediately after radiation treatment is unlikely to be from the radiation.  Its more likely these tumors would respond the same way as prior treatment and take months, before shrinking noticeably.  Anyone been in my shoes and can offer their experiences?

Gary

 

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pookerpb's picture
Replies 4
Last reply 1/24/2016 - 1:27am

So after the last two scans were done yesterday exactly 2 weeks apart, it has become apparent that we need to do something drastic. Hubby is going to start the high dose IL-2 and Aflibercept combo trial in about 10 days if all tests come back next week ok for stress test, etc.

We have reached a crossroads where the disease progression is moving very fast and every day becomes more symtomatic and more painful.

After failing multiple trials with initial response, then progression, we are going to try another but its one we we have not been wanting to do EVER....well, the IL2 pat of it. Of course we know the statistics of the IL2 and how miserable the treatment can be. Please pray he can get some relief from it after, even if only for a short time until something new comes our way.

 

Krista

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OkieJen's picture
Replies 11
Last reply 2/5/2016 - 11:24pm

So, just wondering if anyone else is worried about the new report on pregnancy and melanoma. I am 40 years old and diagnosed with a Stage 1a melanoma last September (0.25mm breslow depth reclassified from 0.4mm following a re-read at MDA and <1 mitotic figure). I had a subsequent WLE at MD Anderson in October. (no SLNs biopsies taken). I have a two year old daughter and when looking back at photos my melanoma was present when I was pregnant. I have a recheck appointment at MDA in April for thoracic radiographs (aka chest x-rays) and am seeing my local dermatologist for a skin re-check in February. According to the report, melanoma in pregnant women or women diagnosed soon after giving birth  (including stage 0 and stage 1) are at increased risk of metastases and their melanomas are more aggressive. Just wondering if I should be getting rechecks more often rather than every 6 months. Even more spooked now.

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Anonymous's picture
Anonymous
Replies 7
Last reply 1/22/2016 - 9:20pm

What's the typical plan? If there is response to the braf and mek.. then what? I have read it stops working after a few months. Do doctors typically start immunotherapy when that happens?

Rebekah

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Queenbee's picture
Replies 4
Last reply 1/21/2016 - 4:48pm
Replies by: ldub, WithinMySkin, jennunicorn, Anonymous

I just had a wide excision surgery on upper arm, after receiving a melanoma diagnosis 5 days prior. What do you recommend for home care? I have 12 stitches total (some inside that will dissolve and some external that need removed). The nurse told me but I was to nervous to process and remember. Thanks!

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jennunicorn's picture
Replies 11
Last reply 1/26/2016 - 6:35pm

It has been over two weeks since my second infusion. My next one is on Monday, the 25th.

Not a lot different from the first infusion. Mostly just fatigue. Not that fatigue is easy, it's made it very difficult to work as much as I'd like to, since my job is very demanding. But, it's better than a lot of the other side effects. 

I noticed for about a week and a half after the second infusion that I had days where I wouldn't be hungry. Not that I was nauseous or anything, I just noticed that my usual (very active) appetite was not there. It's back this week, thankfully. My birthday is tomorrow and I'd really like to enjoy a nice dinner and some cake!

Of course, I stay realistic knowing that things could be very different after my third infusion, but, I will continue to think positive thoughts and hope for continued ease through the rest of my treatment.

 

 

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