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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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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Prd10's picture
Replies 2
Last reply 11/17/2017 - 7:38pm
Replies by: Prd10, jennunicorn

There was a question on here the other day about treatment and hair loss that I can't seem to find?  I believe the person was asking about anti-pd1 but I don't remember.  There was a snarky answer from an anonymous poster so I hope the question wasn't deleted.  I was curious to see the answers.

I've been on Taf/Mek for about 5 months and about a month ago my hair really started falling out.  I have no idea why it started falling out after so many months and I'm curious to see what others have experienced.  My oncologist could only say that it's different for everyone.    I didn't have hair loss with any of my other treatments and I'd like to know what to expect.  

Thanks 

Caitlin

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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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Nick C's picture
Replies 7
Last reply 11/17/2017 - 11:19pm
Replies by: TexMelanomex, Nick C, Ed Williams, Anonymous

Hi all..Things have taken a detour in what I thought was a relatively smooth ride. Started Keytruda in January. By the end of May all know lesions were gone or "resolved". There was a new suspicious spot in the abdominal region that was concern to my onc. We continued with the treatments, but continued to see progression (hoping it was psuedoprogession). Last Friday's scan showed continued progression. Today was suppose to be a treatment day, but after my appointment with my Onc, it was decided to have me meet with another on their staff to see if any trials may be available. If no trials, then the next option is Yervoy (which I tried to avoid going on). Will probably see the trial coordinator after Thanksgiving. In the mean time, my Fridays are now free.

Everybody have Blessed Thanksgiving.

Nick


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obtu.bt's picture
Replies 2
Last reply 11/17/2017 - 11:41pm
Replies by: TexMelanomex, Anonymous

Hi Folks,

Have you ever seen any comparison between pembro and opdivo?

What do you think about those 2 drugs?

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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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MelanomaMike's picture
Replies 2
Last reply 11/17/2017 - 11:13pm

smileyYeeeeHa!, first off, hope everyones doing good or at the very least "stable", i have some good news, i saw my Oncologist today & shes puttin' a bit of a "Rush" on my treatment, Keytruda that is, i start next week Nov 22nd versus waiting for all my scans to be completed, blood work is completed & looks good, bone scan great, i just need MRI and CT those are already scheduled in the next week or so..Man i cant wait!, it feels like an eternity since the bad news of my lung surgery being cancled due to multiplication of tumors, treatment made more sense.Im ready warriors! i have my TapOut shorts ready, my YouTube "RED" loaded with Fight Songs, boots are by the door im ready, all i need now is Big John McCarthy {UFC Ref} to let me at the mofo {Mel tumors} and its on!..ill keep ya posted after my infuse & document my journey for the new folks who may start Pembro...you all rock here at MRF!...Love ya all!, Mike...

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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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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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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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jennunicorn's picture
Replies 25
Last reply 11/17/2017 - 10:54pm

Hi friends! Wanted to give a little update:

Last week I had my last infusion of Nivo, woo! Today I had surgery to remove the last armpit tumor that didn't respond to treatment. And the most exciting part today was the fact that the anesthesiologist at ucsf actually listened to me when I said I get super sick after and that was the main thing I was worried about. We devised a plan and I didn't get nauseous or sick at all!! 

Should get pathology back to see what that lymph node tumor shows, live cells, dead cells, who knows in about 10 days. They had to take 3 because they were clumped together, three musketeers were going down together I guess.

Hoping all of you are doing alright and welcome to the new friends. This is a great place for support and resources, has certainly been a great place for me the past couple of years. 

Fingers crossed I can use those magical 3 letters soon... will probably have to wait for the official NED status until after my next scan at the end of the year.

Hugs to all,

Jenn - stage IV - Ipi/Nivo (Yervoy/Opdivo); Completed a year of infusions and surgery to remove last tumor

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MovingOn's picture
Replies 7
Last reply 11/17/2017 - 11:29pm

Hi All, Today I had an oncology appointment followed by my 3rd Keytruda infusion. My blood work is all fine and I’m not experiencing any significant side effects. My Oncologist said that going forward we will only have appointments and blood work every 6 weeks (continuing the Keytruda infusions every 3 weeks). Does that seem typical? I was sort of expecting to have blood work and an oncology visit before each infusion.

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 (nodes in back of ear and parotid)

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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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