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.

Expand/ Collapse Topic
 
Replies By
View Topic
Replies by: Bubbles, Anonymous, AllysonRuth, jamieth29

Big thanks to Eric for finding and sharing this one!!!  Here's my write up and a link to OncLive's report:

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/01/nivoopdivo-now-first-line-for-all.html

That's the best I undertand it with as much history as I could find.  Hope it helps.  Happy Sunday!!!  (Love that phrase, albeit slightly adjusted, Allyson!!!)

Best to you all.  Celeste

chaoticallypreciselifeloveandmelanoma.blogspot.com

Login or register to post replies.

jennunicorn's picture
Replies 11
Last reply 1/26/2016 - 6:35pm

It has been over two weeks since my second infusion. My next one is on Monday, the 25th.

Not a lot different from the first infusion. Mostly just fatigue. Not that fatigue is easy, it's made it very difficult to work as much as I'd like to, since my job is very demanding. But, it's better than a lot of the other side effects. 

I noticed for about a week and a half after the second infusion that I had days where I wouldn't be hungry. Not that I was nauseous or anything, I just noticed that my usual (very active) appetite was not there. It's back this week, thankfully. My birthday is tomorrow and I'd really like to enjoy a nice dinner and some cake!

Of course, I stay realistic knowing that things could be very different after my third infusion, but, I will continue to think positive thoughts and hope for continued ease through the rest of my treatment.

 

 

Login or register to post replies.

specka's picture
Replies 7
Last reply 1/26/2016 - 3:17pm

My husband is very sore. His ankles are extremely painful. He's 30 and says he feels like he's 90. I gave him a foot massage, that seemed to help a little. Any other suggestions? He isn't a pain killer kind of guy.

Rebekah

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 6
Last reply 1/26/2016 - 12:35pm
Replies by: _Paul_, Nanners10, Anonymous, jennunicorn

Hello

I was on this board almost two years ago and it was very helpful. Thank you so much for that!! Was looking for Melaoma Specialist in SF Bay Area for my mom.

 

Mom went to Stanford and had a WLE on her right leg almost two years ago (where melanoma mole was) and SNB. The SNB came up negative. The past month she has had swelling in right leg (swelling has since gone down with more exercise and water). HAs had slight swelling ever since SNB so was not to concerned but it did get quite bad and her primary care DR sent her in for sonogram to rule out DVT and do a more focued one on lymph. What has come back is that one inguinal lymph glad is enlarged with blood supply and highly suspicious for mailiganancy.  The Melaoma Dr was suprised and said it would be very rare based on her original melanoma.  From what I have read on the board and overall it can happen. My mom is upset and concerned about her care at Stanford.. who she should be talking to and what next process is.. As of this point trying to get ultrasound guided biopsy, but also considering second opinion with UCSF. Though not sure would see her till recuurecence confirmed? My other Question include  -At this point should primary dr be guiding care.. she has talked with Melanoma Dr? -Is single Biopsy the way to go or should a PET scan be done first? 

 

Any input appreciated!!!!!

Thanks!!

 

Login or register to post replies.

Gothikchile13's picture
Replies 1
Last reply 1/26/2016 - 7:19am
Replies by: rosa1

Hello all. My dad was diagnosed with malignant melanoma under his right arm back in June. He's had many different therapies including radiation, keytruda, and one dose of chemo. Between having radiation and the chemo he developed sepsis pretty bad. Since then he has been very confused (though he still knows who me and my family are, he's just out of it).

He's had a few brain scans and the cancer hasn't spread to his brain or anywhere else really. After they did the first chemo treatment the doctor said that he was too weak to continue chemo and recommended we check him into hospice. He is completely unable to care for himself due to the confusion and weakness in his limbs from lack of activity. I'm just wondering if there are any other options then to let him rot in a hospice center.

I know it sounds really bad and there probably isn't any hope in this situation but I'm trying to do anything I can to help him.

Login or register to post replies.

Anonymous's picture
Replies 2
Last reply 1/26/2016 - 12:02am
Replies by: jennunicorn, Janner

Hi, this is my first post on here so I'm sorry if this isn't the right place for this, I'm just starting to get very nervous and my regular dermatologist doesn't have an appointment for almost a year.

Anyway, I have a family history of melanoma (my uncle passed away a few years ago shortly after being diagnosed with aggressive melanoma and both my mother and sister have had "precancerous" moles removed) and have very light skin and despite always wearing sunscreen burn very easily and have suffered several sunburns severe enough to make my skin blister. I used to be regularly checked by a dermatologist for an unrelated skin condition and she remarked I should keep an eye on a mole I have on my elbow but I honestly forgot and haven't been for several years now. A year or so ago I started noticing new moles but they were small and I didn't think too much of them. Then about 6 months ago one very small one got very itchy and started bleeding periodically for a week or two, but the itchiness has since dissipated.  Then the other day I noticed yet another new but normal looking mole (small symmetrical distinct edges etc.) so I started checking the rest of them and see that the one on my elbow is about 5mm, asymmetrical and has blurry edges, but I honestly don't remember how it looked the last time my derm saw it or if it changed. None of my other moles seem to have changed including the one that was itchy and bleeding. I called my derm but she doesn't have an appointment for almost a year and my insurance won't let me see someone else. I asked my pcp about it but they said there was no point checking it out because it isn't raised or changing dramatically. 

I guess my question is do I need to be worried and if so, enough that I should pay out of pocket to see a different derm, or is it safe to wait the year and just keep an eye on it? I'm just really nervous because my uncle put of getting his mole checked and by the time they caught it there was cancer all throughout his system...

Login or register to post replies.

Anonymous's picture
Replies 2
Last reply 1/25/2016 - 10:54pm
Replies by: ldub, Anonymous

Hi 

my Dermo successfully removed 2 melanomas last year . I have not had any diagnosed before . She says I only need to see her once a year for check ups / mole mapping . 

As melanoma is life threatening I am concerned that is not enough ? My back has hundreds of moles.

Also , she doesn't take photos of my back so she is not able to compare mole changes over time , surely that needs to be done ?

Thanks 

 

Login or register to post replies.

Rocco's picture
Replies 9
Last reply 1/25/2016 - 10:09pm

Just had my annual visit to DFCI in Boston.  Annual CT (chest/abdomen/pelvis)  and  MRI  (brain) were clear!   Blessed to still be here.  Still praying daily, working and living life.  Prayers and good vibes to all dealing with melanoma.  

-Rocco, Stage IV in 2005, NED in 2009, Ipi 10mg/kg responder.   

Luke 1:37

Login or register to post replies.

DZnDef's picture
Replies 8
Last reply 1/25/2016 - 11:46am
Replies by: Linny, Linda N, DZnDef, Anonymous

On today's episode of The Quest for the Cures (episode 3) there was a long segment devoted to melanoma and Rigvir which was developed in Latvia and is approved in Latvia and Georgia by those countries' versions of the FDA for the treatment of melanoma.  The show interviewed several long-term survivors of melanoma who used Rigvir (which is a virus that replicates inside of cancer cells, destroying them while leaving healthy cells alone).  One survivor was too weak to get out of bed but her parents drove her from St. Petersburg, Russia to Riga Latvia for treatment and now she is fine.

I was thinking of Artie while wathcing this as he has tried so many things with limited success.

I'm just curious if anyone knows the status of this in the US.  Is anyone attempting to get it approved here?

Maggie - Stage IV (lung mets unknown primary) since July 2012

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 0
This website will notify you about current clinical trials.
 
This is the newest one.
 

 

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

Login or register to post replies.

wildpoppy's picture
Replies 5
Last reply 1/24/2016 - 2:16pm

Hello everyone..

I am newbie... Looking for some advice...

I have what I was told was a sebhorric keratosis under my breast... I saw my GP (UK)... who told me so, and a dermatoloigist who also told me the same.

I haven't given it another thought until recently (this was about 4 years ago)... until the area around the keratosis started itching...

Fast forward 3 weeks... The itching has subsided (though not completely gone)... but more alarmingly, there is a black patch appearing that wasn't there previously...

I have been searching for information as to whether sebhorric keratosis can can colour to black, but all I see is likely melanoma...

I have an appointment booked with a dermatologist in a week, but I am honestly shaking lwith fear with worry... My research is taking me down dark alleys on Google... with zero info on SK turning black/changing colour. Could it be that the doctors misdiagnosed what it was back then?

Can a sebhorric keratosis turn cancerous?

 

Any advice greatly appreciated, I'm not sleeping well.

Thanking you and wishing everyone wonderful healing

Kimmy

Login or register to post replies.

SPier's picture
Replies 19
Last reply 1/24/2016 - 4:40am
Replies by: grahamtosh, Hstevens0072, Anonymous, Janner, Colleen66, POW, Swanee, SPier

Hi,

I was diagnosed and treated for superficial melanoma on my chest in 2012.  Doctor felt really good that it was all gone and have not had any reoccurrence in the area.  Since then I've gotten regular checkups and had a few things taken off that all came back benign. During my most recent vist, I had two moles "punched" out on my abdomen.  They came back atypical nevi.  I don't know the severity.  The doctor recommended given my melanoma diagnosis, that I should have these two areas treated with wider excisions.  Is that necessary given that I already know they are atypical nevi and are now gone?  I'm not sure how that could turn into melanoma if they are gone.  I do have a lot of moles, am fair skinned and freckled.  Any advice? Thanks.

Login or register to post replies.

pookerpb's picture
Replies 4
Last reply 1/24/2016 - 1:27am

So after the last two scans were done yesterday exactly 2 weeks apart, it has become apparent that we need to do something drastic. Hubby is going to start the high dose IL-2 and Aflibercept combo trial in about 10 days if all tests come back next week ok for stress test, etc.

We have reached a crossroads where the disease progression is moving very fast and every day becomes more symtomatic and more painful.

After failing multiple trials with initial response, then progression, we are going to try another but its one we we have not been wanting to do EVER....well, the IL2 pat of it. Of course we know the statistics of the IL2 and how miserable the treatment can be. Please pray he can get some relief from it after, even if only for a short time until something new comes our way.

 

Krista

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 7
Last reply 1/23/2016 - 5:52pm

The short of it.. Husband is Stage IV, been on opdivo for almost 6 treatments of 12.  Constant stomach problems,  coughing and that is increasing in severity.  Now persistant pain under his ribs, and in the kidney areas.  He's lost over 20lbs since treatments have started.  He's cranky (justified) and lethargic.  Positive attitude is deminishing.  Personality and memory issues.  We had a PET scan and MRI on his brain done recently and will get results on this coming Tuesday. 

Draining watching him decline.  I need a break but afraid to leave his side for a minute.  I dont know what he needs from me to support him, sometimes I think Im more of a pain for him.  He doesnt leave his room much.

We're both going through our own hell in different ways with this. 

Im tired, scared, angry and would love to escape for a few days.  Not possible.

Thank you for letting me vent. 

R

 

Bin

Login or register to post replies.

Pages