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 1
Last reply 11/21/2017 - 8:31am
Replies by: Abbygx2589

Partner had stage II melanoma removed 3 years ago and has received CT scans and blood work every 4-6 months since then. He has several lung nodules but they've been stable this whole time. Now one of the lung nodules has increased in size fairly significantly since his last scan 6 months ago. Have any of you heard of something like this before?

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Jubes's picture
Replies 5
Last reply 11/24/2017 - 6:00am
Replies by: Mat, Jubes, cancersnewnormal

Hi all

 

i haven’t posted for a while but I’m back at work and my last 2 pet scans were clear! They show inflammation consistent with my ankylosis spondalytis in my spine hips and right shoulder. I see my rheumatologist regularly and am on a mix of sulphazalasine plaquenil and anti inflammatories  but at the moment I have a lot of pain in my right shoulder and bicep. It’s been like that for five months. I have had 2 cortisone shots which have helped me get to work but the pain keeps coming back. At this point the rheumatologist has offered me either surgery or infliximab. Down side of surgery is it takes 6 months to heal. Also not sure if the surgery would just drain out the fluid ( there’s lots) or also fix the torn tendon. Down side of infliximab is possible side effects of MS ! Or melanoma. I did infliximab for 6 months last year and it worked very well. Then my melanoma in lung grew and we had to do a left lower lobe resection. The oncologist is not convinced that there’s a connection but the rheumatologist is not so sure as we don’t have much evidence to go on. Also he says if it’s even only a 1% chance of progression due to infliximab I might well be in the 1% as it’s happened before. 

Are there any stats of recurrence after infliximab that might help me with the decision?

btw the rheumatologist thinks if infliximab is not a problem then overall it will be better for me if I live longer, as if I keep going with all this inflammation I might have very serious joint problems as I get older if I don’t take it

 

thanks for listening and much love and respect to you all

 

anne-Louise 

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Anonymous's picture
Anonymous
Replies 3
Last reply 11/22/2017 - 1:03pm
Replies by: Anonymous, Richard_K, Prd10

Question:  once you have been on taf/mek, can zel still be an option if needed?

thanks in advance. 

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jag's picture
Replies 14
Last reply 11/24/2017 - 9:04pm

(grrrrr FROM BACK IN THE DAY grrrr)

Just would like to let you know that my most recent MRI and chest x-rays make me 9years and 9months NED from Melanoma.  If you read my patnet you will see that I had 1 or 2 more craniotomies after 2008, but I still made it.  The last time I had actual melanoma tumors was March of 2008.  The next 2 surgeries were just necrosis from radiation that doesn't really count.  4 more months and I am officialy 10 yrs NED!

Life is good, God is good, I will say another prayer (the same one I say everytime I am in the MRI) that everybody getting treated for cancer is healed.

Love,

John

 

 

Insert Generic Inspirational Motto Here

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momof4boys's picture
Replies 6
Last reply 11/20/2017 - 10:51am
Replies by: cancersnewnormal, Anonymous, Prd10, jennunicorn

Ok, so long story short... I was diagnosed nodular mel, 3b in 6/13 in my right calf. Did the SNB, CLND, and 1 1/2 years of Ipi 3mg. So I've had a couple things pop up in my lungs which have been biopsied and showed normal tissue so I probably get scanned way more than most people at this stage in the game. Anyways, my Ct last week showed a new, enhanced nodule on my left ovary, suspicious for metastatic disease. It's small, only 1.7 cm. So when my onc told me this initially I wasn't worried because I have had a follicle cyst on that same ovary in the past. But I could tell my Dr's demeanor had changed after reading the report. She didn't even notice the spot on a quick glance because that is not typical of melanoma. So what she said is because they are saying it is enhanced it actually has blood flow which is why it sucked up the contrast. My last scan was in May and it was a PET, my last CT was last Nov and I had a vag U/S in April of 2016 due to heavy bleeding/clotting. Nothing has ever showed on any of these scans and I've probably had 10 pet scans and 15 or more CT's since diagnoses in 2013. So ladies, any input here would be much appreciated as my mind is wandering today. I go back tomorrow for U/S. I have a couple in my church that is going through Ovarian cancer right now and he agreed it was his understanding if it has blood flow that would be more like an active tumor, right? I could see having a functional cyst show up on imaging but would it really have blood flow if it was just a normal cyst? BTW, Im 35.

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Anonymous's picture
Anonymous
Replies 8
Last reply 11/20/2017 - 4:56pm
Replies by: Anonymous, Claroni10, Janner, ThinkingPositive, jennunicorn

How after a wide excision with a sentinel biopsy do you usually have results?  Also after the procedures how long should I expect to be out of work.  I have a fairly demanding job.  My excision will be on my back.

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Ed Williams's picture
Replies 4
Last reply 11/19/2017 - 4:45pm

This is a link to a SITC "Society for Immunotherapy Of Cancer" really good, especially for those new to the Melanoma world. https://www.youtube.com/user/SITCancer

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Anonymous's picture
Anonymous
Replies 5
Last reply 11/18/2017 - 5:08pm

Hi, my father was recently diagnosed with melanoma skin cancer, and I have some questions/concerns.

From what I can gather, my father has had two surgeries- one where they only cut out part of the tumor to biopsy it- this is when he was officially diagnosed, and then a second, Mohr surgery, to remove the rest. My first question is why couldn't they tell him how deep the tumor went? We still don't know what stage he is at. My second concern/question is that we have to wait over two weeks to find out any information- his most recent surgery was last Monday, the 13th, and we won't find anything out until the 29th. 

The doctor only checked surface lymph nodes, but based on where my dad's tumor was, it looks like it was close to lymph nodes that you wouldn't be able to feel on the surface. Why weren't these checked? Did they check them and not say anything? 

I just feel like we're being kept in the dark, and this concerns me. Especially considering how quickly this type of cancer can progress. 

My dad said that the doctor seemed confident that everything was removed and that it hadn't spread, but I just feel that some questions that should or could have been answered werent, and this lack of information worries me- is it because they need to do more investigation? That makes me think that everything isn't routine, and that they're just giving us platitudes until they figure out what is going on.

Am I just freaking out unnecessarily?

 

Thanks in advance

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jjk17's picture
Replies 13
Last reply 11/19/2017 - 9:40pm

I am possibly going to start some treatment for my Stage III B melanoma. Doctor highly advises Nivolumab...Wanting some input from anyone who may have or is on this! We need to make a decision soon. The next step is to contact insurance ect. I am absolutely dreading that part.

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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?

Was lentigo maligna melanoma IIA on nose. WLE and graft Oct/Nov 2017. 

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Prd10's picture
Replies 8
Last reply 12/4/2017 - 7:54pm

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 8
Last reply 11/19/2017 - 12:00pm
Replies by: Nick C, TexMelanomex, 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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