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 3
Last reply 9/21/2017 - 2:12pm
Replies by: hellokitty1, JuTMSY4, Anonymous

I've had a brownish stain looking thing under my toe nail for a few weeks now. I thought I had bumped it on something. Three days ago I noticed a small brown spot under my skin on the bottom of my toe. I'm not proud to admit I cut into it about an hour ago. I was hoping it was a blood blister but there was no blood. Just this little hard brown thing that seems to be in the bottom of my toe. There isn't any pain. But Google keeps bringing me here. I am not sure what to do.

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Bruce Davis's picture
Replies 2
Last reply 9/21/2017 - 11:56am
Replies by: uccio2014, SOLE

Just felt I had to share my experience as I read a simular one about a year ago or so that gave me inspiration. I've had it easier than a lot of stage 4 people. Interleukin 2 wasn't much fun and either was the "6 months to a year " to live diagnosis from 3 sets of Oncologists in 2011. No primary location was ever found. A nodule appeared in the left arm pit after "leaning" on crutches for 6 weeks following a hip resurfacing.The 6 cm nodule along with the remaining lymph nodes were removed and radiation followed.About 2 months later nodules presented in the lungs. The largest being 5 cm. Being BRAF+ I started Zelboraf in September of 2011. After a few months the CT scan showed the nodules shrinking. After 4 years and 9 months of Zelboraf, the Oncologist let me stop taking it. A 3 month follow-up CT scan showed no progression of disease. The CT images might be mimicking small nodules but could represent scar tissue. I heard the protocol now is to stop Zelboraf after 2 years.

Being off the Zelboraf for 3 months most of the side effects are gone and I'm getting back to normal. I realize melanoma could resurface at any time, but I'm very thankful for every day! Hope this information helps.

Bruce

 

Presently it's "Don't give up."

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williez's picture
Replies 7
Last reply 9/21/2017 - 11:48am
Replies by: Bubbles, Anonymous, dmarie, jahendry12, sgreenberg

Hello all, my name is Guillermo and live in Argentina.

I am Stage IV and I am taking Dabrafenib and Trametinib after failing Ipilimumab and Pembrolizumab (after 22 dosis)

Is someone in the group on dabrafenib and trametinib

Thank you for you attention,

Guillermo

Willie

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braunerk's picture
Replies 6
Last reply 9/21/2017 - 10:11am
Replies by: johnf, Anonymous, Bubbles, Ed Williams

Is anyone in a clinical trial with ImPrime PGG and Keytruda. I have run out of options except for clinical trials. A little history 2007 melanoma first diagnosed 2A 2013 subcut mass now 3B 2014 stage 4 with masses in pelvic and groin lung masses in 2015 and liver masses 2015. I have tried ippi keytruda tvec and braf dugs (mek and taflinar jst got my scans back and I have a new liver tumor about 1 inch across.

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Quick background, stage 4 mel since 2014. Have tried Sylatron, IL2, yervoy, opdivo, trial of palbociclib, trial of glembatumumab vedotin &  now on keytruda.  Having some success with the keytruda, however I have an area on right upper maxillary/palate that is of concern to all.  Dr sent me to ENT who recommended surgery.  The two options were to do maxillary obturator prosthesis or a transplant/patch. Dr  recommended the transplan/patch surgery.  This  would consist of going in through neck up into mouth area to remove tumor, part of cheek bone and couple of teeth.  They will graft skin from leg or arm then "patch" the hole created from the surgery.  This will require a weeks stay in the hospital (2 days being in ICU to make sure transplant takes), be on breathing & feeding tube.  I'm scared but at this point something has to be done .  Wanted to get feedback on what you guys thinks.  Thanks!!

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mom3girlsFL's picture
Replies 3
Last reply 9/21/2017 - 9:07am

Hi Friends!

Longtime member, frequent lurker...sadly, not much of a poster.

 

I have been on this forum since (roughly) 2003. There have been many people here who I've been blessed to journey with and many more who I've been able to learn from. There have been times when I've  "stepped away", sometimes because it can be so overwhelming, and sometimes because of battles being lost by the most courageous warriors. I am so grateful to you all who continue to regularly post and update and share information.

With so many current stories of people battling-people who you cant help but love,  I thought maybe my past year (year and a half) could offer optimism and hope.

2003 stage 1.  2010 groin dissection, start interferon...later 2010 fail interferon, inguinal node surgery. Clear scans, watch and wait. 2015 stage 4 lung, retroperinoteal lymph nodes, para-aortic lymph nodes.

Started Taf/Mek combo-cant remember if we were into 2016 by this time.  Immediate responder! It hasn't  been easy, have changed dosing, switched to zelboraf/cotellic (was bad!), took only taf for a while, have had a couple med "vacations"...currently full dose.

So far 3 scans (last one December) have shown no recurrence. I continue to try and stay cautiously optimistic about the future knowing, statisically, things can change.

Dont know if anyone else here has been on T/M this long as well?

Anyway, much love to all!

Laurie

 

Do not fear tomorrow, God is already there.

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http://chicagotonight.wttw.com/2017/09/15/study-vessels-spread-cancer-ca...

 

A new study found that the same process can strongly enhance the effects of immunotherapy in melanoma patients being treated with checkpoint inhibitors

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Anonymous's picture
Replies 9
Last reply 9/21/2017 - 2:31am

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mary1233's picture
Replies 2
Last reply 9/20/2017 - 11:53pm
Replies by: CHD, 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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MovingOn's picture
Replies 8
Last reply 9/20/2017 - 8:26pm

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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rabbits68's picture
Replies 3
Last reply 9/20/2017 - 6:16pm

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
Anonymous
Replies 6
Last reply 9/20/2017 - 5:48pm

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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Scooby123's picture
Replies 17
Last reply 9/20/2017 - 3:20pm

Hi all hope you all are good as can be expected. Please can who has had or on keydruda give me there experience with side effects. When started and what. I have only had 1 dose not much side effects apart from little upset stomach and strange pins and needle feeling in arms and hands on and off. I am off for second dose Tuesday coming. The consultant said it can interfere with the nerves.

 

Scooby❤️

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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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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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