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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casagrayson's picture
Replies 3
Last reply 12/27/2013 - 10:57pm

Strength and Courage,

Susan

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mitchwendy's picture
Replies 2
Last reply 12/23/2013 - 3:54pm
Replies by: mitchwendy, sbrooks90

I had my SNN on my left groin last Monday. However, yesterday and today the area to the outer side of my thigh really feels bruised. Almost from the left side of where the incision was but not exactly touching the incision, all the way to the outside of my thigh, does this make sense? Has anyone had a bruising sensation a week after a SNB?

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kpcollins31's picture
Replies 6
Last reply 12/26/2013 - 6:19pm

Just found out the results of my scans earlier in the week. Brain MRI was clear which was great. However, CT of Abdomen came back with the following: "1. Thickening of the small bowel wall in the left lower quadrant with suspected small bowel mass, raising the concern for metastatic disease. PET/CT is suggested for further evaluation. 2. Subcentimeter hypodensities in the liver are too small to accurately characterize."

I have not talked to my oncologist since the scans and actually found these results posted online. My appointment with him is not until the end of January... guessing that might get moved up. I know the above does not confirm stage 4 but it seems pretty likely. At least there are some promising treatments out there now.

Kevin

 

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Anonymous's picture
Anonymous
Replies 2
Last reply 12/25/2013 - 6:23pm
Replies by: BrianP, NYKaren

Any idea when this may become a reality? 2014?!?

Thank you all and have a beautiful Christmas...

Sally

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natasha's picture
Replies 5
Last reply 12/31/2013 - 6:07am
Replies by: natasha, Anonymous, JC, WendyD.

   Dear friends ! I wish you a Merry Christmas ,  good health and happiness !

  All the best for all of you and your families !

 I hope new year will bring only good news only  for everyone!

 

 

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trigirl67's picture
Replies 9
Last reply 1/29/2014 - 7:08pm

I have a Melanoma tumor in my lower right lobe of my lung...scheduled for surgery Dec 26 and am scared!  Anyone can tell me what to expect?

Trinity m Ballare

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WendyD.'s picture
Replies 9
Last reply 12/30/2013 - 2:35pm

I have spoke with Janner about it taking so long for me to receive my WLE since my melanoma diagnosis. First I would like to say that orginally I didn't have my specialists to follow up with after my GP sent my charts over to him. I ended up having to go to another doctor completely which was shocked that no one had followed up considering my diagnosis. Well, the new doc said he would do my WLE himself since he does these kind of things all the time. Plus my melanoma was thin and in an area that I wouldn't have to see a plastic surgeon. Out of curiousity I'm just wanting to know how long each person here had to wait before they performed the WLE on them after their diagnosis? Thanks to all. :)

In God I Trustsmiley!

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tasjacques's picture
Replies 4
Last reply 12/26/2013 - 10:54am
Replies by: Anonymous, tasjacques, awillett1991

My husband, Jacques has been doing so well in PD 1, his response has been fantastic as we posted back in August at the 12 weeks mark, and then he has continue to response to it as the next scans showed still regression/shrinkage of the tumors on the lungs, liver and lymph nodes Great! 

BUT since the beginning of November he has been suffering this excruciating stomach pains, diagnosed as gastritis, no medication is really helping him with the pain. About a week and a half ago his blood pressure drop to low 70's over 50's and last Tuesday when we went to the doc his BP was 64/37. He is now in the hospital to bring the BP up, give him nutrients (at this point he was not eating much or not at all). He has had severe fatigue, pain all over, decrease appetite.

Today they will be testing for hypothyroidism to see if this is the culprit.

has anyone experience hypothyroidism? What were your symptoms, all the doctors that have seen him, don't have an answer really for us in what is causing all his symptoms.

I don't know how to feel, I am frustrated that we can't help him, that we can't find what's going on for him to have all these symptoms, specially the abdominal pain. 

He was doing so good, and BAM! has lost 20 lbs, extreme fatigue, sleeping all day, unable to walk for long...

thanks for reading. I keep praying but feel lost

Elenise

(Jacques profile is under tasjacques)

 

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lucy3's picture
Replies 3
Last reply 12/21/2013 - 10:26am
Replies by: Linny, SABKLYN

recently i posted that i had refused interferon after being randomized to the interferon arm of the ipi clinical trials.  i feel i made the appropriate decision for myself at this stage of my life.   certainly i am not agaist clinical trials, just against interferon.   does anyone have any information regarding vaccine trials that are either dermal or intravascularly used as an adjuntive therapy for this stage of mel?  i have read about a couple at the university of va.   mayo clinic has a new one.   what has been your experience?  have these  vaccines been successful in any way.   i want to be pro active, and would like to have some therapy rather than watch and wait.     thanks for your knowledge and help.  lucy3

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Anonymous's picture
Replies 4
Last reply 1/13/2014 - 11:15am
Replies by: Golda_, JerryfromFauq, Swanee, Anonymous

I have one box vemurafenib , my father is dead , pls contact me if you have a patient who needs it .

email : abdullah_jarbouh@hotmail.com

00201095301696

you will pay for the shipping cost only .

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aliersk's picture
Replies 2
Last reply 12/21/2013 - 5:37pm
Replies by: aliersk, Anonymous

I have one cycle worth of tremodar I paid $3k for which my husband did not take. He sadly passed away last month and i've been wondering what to do with it.

I wish everyone success with their treatment with this awful disease.

Please send me a private message.

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Richard_K's picture
Replies 8
Last reply 1/10/2014 - 10:51am

For those of you familiar with me, you know I have been on Zelboraf for quite some time and that over the past fifteen months or so, I have had issues with my bilirubin being high.  At my six week NYU check-up this week, the bilirubin count came back quite low.

When I came home from NYU the mailman had delivered the news from my recent colonoscopy  – no problem, repeat in five years.

Today I met with my urologist about last week’s prostate biopsy (third biopsy since diagnosis) – prostate cancer – NED!

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mark1101's picture
Replies 4
Last reply 12/26/2013 - 3:21pm
Replies by: mark1101, awillett1991, POW

Got the results of my last PET scan.  They noted a small (less the 1 cm) shadow on my right posterior iliac and ordered a biopsy.  The biopsy confirmed a melona met on the bone.  My onc is suggesting we postpone treatment of this for a mont or so, take anothe scan see what changes occur.  If it is smaller or gone, do nothing.  Apparently Ipi is noted for having a delayed reaction effect on  mets sometimes.  If it is the same, go in surgically and kill it with a hot or cold needle at the surgeon's recommendation.  If it has enlarged or spread to other sites, then we are considering IL-2 HD.  I am considered of good general health and good likely tolerate this treatment with high probability of backing the melanoma off.

Anyone else experienced a similar set of choices...how did it go for you.  Also anyone familiar wtih IL-2 HD and its benefits relative to the side effects.  How did you have it administered?

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Anonymous's picture
Anonymous
Replies 6
Last reply 12/28/2013 - 2:35am

I'm anxiously waiting for call back from my onc doc about a node that lit up on scan earlier this week...she didn't know a whole lot when she phoned last night at 10 pm...no final report as yet, but at least one node had lit up; she said it's likely in drainage area from lung mass removed by VATS early Sept....

is the standard in these cases (well, I really don't know the case as yet I guess!) resection if at all possible, followed by radiation? I'm not sure a lit up node qualifies me for the ipi/nivo trial...but would definately like this thing (hopefully it's only one) removed...I so so so appreciate everyone's input and support...thanks very much

 

SB

Sally

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joy_'s picture
Replies 3
Last reply 12/22/2013 - 8:02am
Replies by: BrianP, WendyD., Janet Lee

Hi everyone.  I have been an occasional poster and long time reader of this forum - since my husband's initial diagnosis nearly 6 years ago.  I know for me, it has always been encouraging to read the good news so today I would like to share some with you all.

I don't know if the patnet still works so here is a summation of my husband's journey.  He was diagnosed stage II in 2008.  All was fine and dandy until 2010 when mel reared its ugly head showing up in his lymph nodes which lead to a LND and horrible month of interferon.  Again, all fine and dandy until this past February when another enlarged node was found and scans revealed spots on lungs, liver, adrenal glands, etc.  BAM! - stage IV.  He is BRAF positive so decided to participate in a trial using Zelboraf for 6 weeks then Ipi then Zelboraf.

He did great on Z, and tolerated 3 doses of ipi at 10mg/kg when all of a sudden he had weakness and started losing mobility.  An MRI showed lepotmeningeal disease.  My husband was paralyzed from the waist down in the matter of a few days.  They thew the kitchen sink at him, radiation, Decadron, etc.  We all thought he was crashing.  In a few weeks he went from a wheelchair to a walker, and they put him back on Zelboraf. 

A neuro-onc said he might get 60% mobility back.  No one could believe how great he was doing.  They started questioning whether it was leptomeningeal disease or polyneuropathy from ipi.  He was walking again in to time though and even able to kick a leg over his motorcycle to ride that.  Still, no one can believe how well he is doing.  

So now for the really good news.  He has now been on Zelboraf for 6 months and had scans last week which showed NED!  In addition to that, his skin is showing depigmentation which indicates a late response to Ipi.  He is still very fatigued and has nausea & vomitting.  Life is still not loads of fun, but there is nothing like NED to brighten your holiday spirits!

This has been the most difficult year of our lives.  A roller coaster that so many of you are familiar with, but at the moment we are on the upswing and enjoying every minute we can!  

Press on, melanoma peeps.  I know the battle is tough, our family has weathered this storm and have the battle scars too.  I hope you are encouraged though to hear some good news.

Merry Christmas, Happy Holidays, and may God bless you.

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