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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sweetaugust's picture
Replies 11
Last reply 11/17/2017 - 11:44pm

Hi guys,

I haven't been on the site in ages.  I just haven't had the time with two jobs.  I wanted to update you all that I started the trial for Pembro (Keytruda) back on Halloween in 2012 and I came off of the trial back in January 2017.  I had a great response and am totally healthy.  So lucky! 

So I just wanted to check in and say hello and give a great update. 

All the best, Laurie

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ThinkingPositive's picture
Replies 1
Last reply 11/17/2017 - 11:22pm
Replies by: TexMelanomex

Hello- I had a full thickness graft placed on my nose 11/10/17.  Today is one week and it looks like it is adhering nicely. The color is pink/purple.  Has  anyone had a graft and if so, how long before the skin blends in a bit?

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gregor913's picture
Replies 3
Last reply 11/17/2017 - 10:10pm

Stage 3b
Mel on left mid back.
1 lymph node micro to left armpit.
Clnd on left armpit done. Dec 2015

Hi.
I just had my pet scan results. New findings. New punctate focus of increases activity with Suv value of 3.2 Subcutaneous soft tissues lateral to the right knee. No corresponding CT abnormality in this region.

Could this be melanoma?

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Been a member for a while, but rarely post. 2.5 years since Stage 4 (lungs) diagnosis. Now in liver, lungs, both adrenals, chest wall, and just this week, small bowel.

Started keytruda late August, but have been struggling since. Lots of bleeding mets, and now new mets to the small bowel.

I'm in Toronto, with Dr Petrella, at Sunnybrook. Meeting with her this week, regarding the new mets. Wanted to know if there was anything promising, or available, that I should be inquiring about?

Failed Debrafenib/Mekinist. Radiation on the bleeding mets has failed twice. I understand that I may be nearing the end of my options, but just wanted to find out...

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TP35's picture
Replies 1
Last reply 11/17/2017 - 6:11pm
Replies by: mynas

Hi

What is your opinion on the pregnancy after melanoma (stage IIIa specifically). A friend of mine had melanoma diagnosis 3.5 years ago and they found micrometastasis in two sentinel lymph nodes. There is info concerning melanoma diagnosis (stage I and II) during preganancy but almost no info regarding influence of pregnancy on the outcome after melanoma diagnosis.

I would appreciate any information

Best

TP

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Anonymous's picture
Anonymous
Replies 4
Last reply 11/17/2017 - 5:26pm
Replies by: wildpoppy, Anonymous, Joycem

Hello all

I feel very much like a fraud posting, since I don't have a diagnosis... But I am undergoing severe anxiety at the moment with regards to a lesion that has sprung up very quickly on my forearm. Never noticed it before 1 month ago.

It is pink/skin colour and currently 4x5mm in diametre... half way down forearm on lateral edge so have to twist arm to see it.... slightly raised by about 1-1.5mm... resembling a noduar amelanotic or basal cell ...I have spent HOURS researching :-( and have found many pictures that look like it either of these.

I went to my dctors 10 days ago, as it looked dodgey and had white flaky skin over it...they told me it was probably a bite... :-(

10 days later, it is still here possible gotten bigger (my paranoia, I don't know? but I do think it is)... 

Ok, so I know I need it seen, and have booked a private dermotologist,  so going next Friday. My anxiety is through the roof however, as I am sure everyone on here understands. I can't focus at work, can hardly eat or sleep. I have a 10 year old son, am lone parent, we are very close, and just can't bear the thought of my boy being alone.

Is there any advice anyone can give? Anyone else diagnosed, may I ask what your amelanotics where like before diagnosis? 

I have been in the sun extensively in the past, without protection, and this is currently haunting me...

How do you get through the waiting?? I am trying to keep busy but can even string a sentence together, and spontaneously burst into tears... If anyone has any words of wisdom, I would gratefully receive them.

 

Thank you for any help x

 

 

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jetdoctor67's picture
Replies 5
Last reply 11/17/2017 - 4:06pm

Hello Everyone,

Well, I had my surgery for melanoma on my ear (.04 cm size and .66 mm deep) on the 25 Oct.  The actual surgery went well however I'm numb around the SNLB site (neck under left ear) which I'm guessing this is normal but I've lost some facial movement specifically the left side of my chin and mouth area.  My Doctor said he did not cut the main nerve but working around it may have put it into shock which is causing the numbness and loss of movement.  He also said I may regain all or some or none of the movement back but let's wait three months before we worry. 

My question is has anybody else experienced this?  Would love to hear your experiences.  Thanks and take care.

Terry

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Anonymous's picture
Anonymous
Replies 2
Last reply 11/17/2017 - 1:28pm
Replies by: jennunicorn, Becky

I had my biopsy yesterday for the streak I had under my nail. My dermatologist sampled my proximal nail matrix and did not remove my nail. I sent her an email today asking if a dermatopathologist or general pathologist would review the samples and she said it would be a general pathologist. Is this a big deal for the biopsy? It’s Kaiser so I don’t know if I have any other options.

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sister of patient's picture
Replies 19
Last reply 11/17/2017 - 12:43am

Hey all - Couldn't wait to share this news, though my sister Leisa had her first clear scan in July, Oct. 30 scan is the same - she is totally clear and the onc has finally said those precious little letters - N.E.D.!!! Yayyy!!!

Have said it before but can't say it enough - thanks to so many on this board - you got us through it!!!!!

Best always,

Barb

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Scooby123's picture
Replies 5
Last reply 11/17/2017 - 12:42am

Hi all, hope you all as well has can be. Been a tough few months a lot happening at home and me on treatment.

 

went today for bloods had scans last week was not expecting results today but consultant had a look due to MRI on head was back but body was not. Head still clear tumour in head as now resolved no evidence of tumour., Body was not back but lympth nodes in chest 2 there was enlarged have shrunk. So he was pleased with results. Thyroid increasing dose to 75mg from 50mg. Side effects for me have been musle cramps in ribs and the trips to the loo . 

Been a emotional few months have been feeling down and my mum had a stroke. So if I have not been online much sorry.

There seems to be a lot of new people on line so I would say welcome and you have come to a wounderful place for support. There is lots on board who have great knowledge of this disease and very much needed.

Thank you all for all your support would not know what I would do without you all.

Scooby❤️

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Anonymous's picture
Anonymous
Replies 4
Last reply 11/16/2017 - 8:18pm
Replies by: kst, Bubbles, Anonymous

I've just had lymph nodes resection and depending on pathology report the game plan is to continue with immunotherapy /anti-pd alone since latest research it shows it's more effective that the Ipi combo/ as an adjuvant treatment.My understanding is ,once you have used this option you can't go back to it. So my dillema is this : what if I need immunotherapy down the line  and this option is no longer available for me?I would like to keep that option open as long as possible  but I also want to be pro-active  with adjuvant treatment post resection  and leave nothing to the chance.Any thoughts?I am really torn ot treatment decision.

T.Chasse

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Spl25's picture
Replies 1
Last reply 11/16/2017 - 6:28pm
Replies by: Bubbles

Has anyone heard much or tried this therapy for bone or liver mets? It seems fairly new and not melanoma-specific, but I’ve seen some promising data for people who can’t do radiation. 

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My Oncologist had a surpise for me today, after being part of Bristol Myer Squibb checkmate 067 trial of Ipi and Nivo or the Combination of both drugs for the last 3 years and 10 months, the company decided to let the remaining patients that where blinded know what they have been getting!!!! I have been a member of the forum for the last 3 years and 9 months, so many times I have been frustrated by people asking about what kind of side effects they should expect on Ipi/Nivo or either of the two Pd-1 drug and I couldn't respond from a personal point of view due to the fact that I didn't know for sure what I have been getting. I am happy to report that after 97 treatments I can finally say with 100% confidence that I am getting "Nivolumab" not placebo every two weeks. I feel like a huge weight came off my shoulder today!!! So many forum members have talked about having a plan if things stop working, well I can now put one in place with confidence!!! This is also my first offical post ever on the forum and it feels pretty good. Love you all, even the Anon's!!! Ed

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Sandi Conley's picture
Replies 7
Last reply 11/16/2017 - 9:24am

I had initial diagnosis of melanoma in 1997.  It was on my right foot and I can't remember levels.  Had wide excision with sentinal node byopsy.  SNB came back clear.  No treatment.  Did follow up appointments for 12-13 years, then got lax and quit going when my dr moved away.

fast forward 20 years ..Jan 2017 went to ER with severe back pain.  CT showed mass on adrenal glands.  I had two lumps removed from chest area and under arm.  They came back melanoma.  (Previous lumpectomies were negative)

pet scan showed melanoma in bones, adrenal glands and soft tissues.  Went for treatment at IU Simon Center.  Was started on Opdivo/Yervoy treatment.  Was ready to get 3rd treatment when MRI showed mets to brain.  Stopped treatment.  Had radiation to brain.

In April, Started Tafinlar and Mekinist as I was positive for mutant Braf gene.  Went into remission very quickly.  Remission lasted almost 7 months.  Scans on Nov 7 showed cancer on spine and kidney.  MRI showed 2 small places in the brain.  I will have gamma knife radiation on them Nov 21.

my Dr has recommended I get a second opinion.  He says it is time for clinical trials.  I live in Indiana and I'm just overwhelmed wondering what the next step should be.  Any advice or encouragement would be appreciated.    Thanks, Sandi.     (68 yr old female)

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Anonymous's picture
Anonymous
Replies 2
Last reply 11/15/2017 - 4:28pm

Can you take Tylenol before brain gamma knife? They didn’t tell me otherwise, but wanted to make sure.

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