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
mybelle's picture
Replies 16
Last reply 2/2/2016 - 7:22pm

Looking for some feedback from other stage IIIA patients who are making the decision to watch and wait or try yervoy. Son diagnosed with IIIA, 1.1mm on right arm, micro one node, 23 other nodes negative. He is leaning more toward boosting his immune system naturally through healthy living due to the side effects of yervoy. Appreciate hearing from other patients in a similar situation.

mybelle

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 10
Last reply 2/3/2016 - 11:02pm

I am in terrible pain.

I have a met in my spine which is pushing on a nerve.

I have tried oxycodone and trammadol without success.

The doctor mentioned lyrica as another option.

The pain is excruciating running down my hip and leg.

I bascially cant do anything.

Any suggestions?

 

 

 

Login or register to post replies.

Replies by: mamatupou, Anonymous

Hey all, it has been a long time:) Happy to be 6 years away from diagnosis!

So, went to derm and had some biopsies done. OF course I have some basal cell stuff. I feel like I will have my whole face redone 1 inch at a time. However, the other biopsy was on my right leg.

This poor leg has had two surgeries, one to remove the original tumor and one to remove my lymph nodes (RLND). This new pathology shows a "compound nevus ( associated architectural disorder and severe cytologic atypia)

So here is where I need advice. The derm wants to do a wide excision. My concern is the complications that come with surgery on this leg. Is it severe enough to take my chances, or is it so unlikely to become melanoma that I don't do the surgery and take my chances?

I would love to hear straight forward answers. pro/cons, the good the bad and the ugly.

I have 4 kids under 13 and need to make smart health decisions. I try to make educated conservative decisions, but I feel like I am making decisions on 5 yr old information.

thanks ahead of time

sarah

Login or register to post replies.

MaryD's picture
Replies 5
Last reply 2/6/2016 - 9:57am

I am fortunate to be long term Stage IV survivor (7 years since last recurrence) and over a period of 8 years, did multiple treatments (INF, vaccine trial, Ipi, pulsed IL-2).

While I'm certainly not getting any younger (61), I've really noticed more joint pain and osteoarthritis in my feet and hands.    A lot of this seemed to come on  after the pulsed IL-2 treatment but it may well be the result of cumulative treatments over time.  

I was wondering if anyone else has experienced this after doing multiple immunotherapy treatments.  

Thank you,

Mary

Login or register to post replies.

MaryD's picture
Replies 2
Last reply 1/31/2016 - 4:59pm
Replies by: Bubbles, Jubes

I am fortunate to be long term Stage IV survivor (7 years since last recurrence) and over a period of 8 years, did multiple treatments (INF, vaccine trial, Ipi, pulsed IL-2).

While I'm certainly not getting any younger (61), I've really noticed more joint pain and osteoarthritis in my feet and hands.    A lot of this seemed to come on  after the pulsed IL-2 treatment but it may well be the result of cumulative treatments over time.  

I was wondering if anyone else has experienced this after doing multiple immunotherapy treatments.  

Thank you,

Mary

Login or register to post replies.

keepthefaith11's picture
Replies 5
Last reply 1/29/2016 - 6:01pm
Replies by: Anonymous, mybelle, keepthefaith11

Ok, here is another question. At this point, would it greatly benefit him to go to Moffitt in Tampa? Since at this stage the nest step would be Yervoy. I am not seeing many other options except wait and see. Would they do anything differently you think? I just don't want to delay the start of Yervoy waiting for an appointment over there. Any opinions?

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 10
Last reply 2/6/2016 - 7:20pm

If I'm taking yervoy and have no side effects does that mean it's not working. I mean do you have to have side effects for it to be working. Anon

Login or register to post replies.

keepthefaith11's picture
Replies 15
Last reply 2/4/2016 - 9:15am

Hi everyone

I have been lurking since my father's initial diagnosis back in December. He had a mole on his chest that started bleeding. The biopsy came back as stage 3b tumor. 3.2 mm, ulcerated, mitotic rate 1. Doctor could feel a lymph node in the armpit enlarged so he asked for a scan, which came back clear with the exception of the node. Last Thursday he had a SNL which showed cancer in the suspected mole. While in surgery they took out a total of 8 nodes. We got the results back today, 2 of 8 were affected. The enlarged on was extracapsular, which really got me worried. The doctor wants to start Yervoy within two weeks. He said radiation was not necessary since the lymph nodes have all been taken out. Everything had clear margins.

I am really worried, how bad is this? I know it's very advanced, but we were just thankful it had not spread to any other organs. Any help would be appreciated. Any advice? Is this the normal progression for treatment?

Thank you so much for reading, you seem like a wonderful community!

Ps. My mother has stage 3 breast cancer 14 years ago. 7 nodes involved. She is fine and has never had a recurrence. I guess this is what gives me hope and makes me not completely lose it.

Login or register to post replies.

DZnDef's picture
Replies 6
Last reply 1/28/2016 - 7:49pm
Replies by: DZnDef, WithinMySkin, BrianP, Anonymous

Hi everyone,

I took an MPIP "holiday" over the Holidays and pretended I didn't have cancer for a while.  It was nice to just enjoy living life for a bit.  I started lurking again earlier this month but decided today I should finally post again.

Today is the 2-year anniversary of my recurrence.  After being NED from surgery in 2012, a chest X-Ray on today's date in 2014 revealed new spots in my lungs.  I thought I was a goner in a few months.  I never expected to be around in 2 years still feeling "healthy".  So I thought that was worth celebrating.

As for the update, some of you may recall that I made the wacky decision to pursue alternative treatment first which I started in March of last year.  This was after January 2015 scans showed both growth and a new met (after several mostly stable scans).  In December 2015 I decided to have scans again after an 11-month interval.  I was really hoping the scans would be definitive (either definitely working or definitely not) so my next steps would be obvious.  Unfortunately, as is so often the case with this disease, the results are not so cut and dry.

The good news:  No new mets!  (Yay!)

The bad news:  All mets are larger.  (Boo.)

My conventional doc (the pulmonologist in this case) wanted me to start conventional treatment right away.  My NY doc (the alternative one) was not concerned with the results as she claims the growth is likely inflammation not true growth and to focus on the news that there were no new mets over an 11 month period.

Additional odd tidbit:  They only mentioned one met in my right lung where previously they always mentioned two (one of which was always stable at 3mm).  They didn't say it went away or is no longer visualized.  They just didn't mention it at all.  Maybe it fell between the slices this time and is still there.  At least it didn't get any bigger or it would definitely have been mentioned.

Which is all to say I can't be sure this treatment is working and I can't be sure it isn't.  I'll just keep at it for now and continue to reserve my right to change my mind at any moment.

I appreciate so much everyone sharing their stories on this site.  I'm constantly re-evaluating what my next steps might be based on the valuable information you all share.  I am such a coward when it comes to drugs. I hope I can muster the courage to jump in if it proves necessary (and I hope I have the wisdom to identify that moment if it hasn't passed already).

Happy New Year to all of you and I wish you all good health

Maggie

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

Login or register to post replies.

jamieth29's picture
Replies 24
Last reply 1/30/2016 - 2:10pm

Just got done at my local oncologist visit and found out they approved it for me. I was very surprised just wanted to let people know some doctors and Insurance may let people get it. I still have some hurdles to get through the first big step is pet/ct and MRI next Thursday. I asked my doctor how long we would go for and his opinion was 6 months or a year. I'm still unsure about my decision and am not going try and not Look past scans on Thursday hopefully the come out clear. I tried getting Nivo through a trial before but relapsed locally before trial started. So I am basically getting trial at home. Everything in 3c N.E.D is kind of a unknown as far as side effects and such but leaning heavy on going for it. I have read info on the trial that Celest went through a couple times so there is some data. Any thoughts or questions?

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 11
Last reply 1/28/2016 - 6:15pm
Replies by: Anonymous, JuTMSY4, BrianP, Polymath, Mat, Bubbles, pookerpb

I need some advice on treatment options.

I have mets everywhere in the liver, bones, spine, neck, lymph nodes , lungs and abdominal wall.

I have been on Keytruda for five months.

The doctor wants to switch me to Nivo to see if i respond to nivo. He says he has patients that responded to Nivo that didnt respond to Keytruda but I believe it is basically the same drug so am not really keen on doing it.

I mentioned Ipi and he said i could try that.

What do other people think? Which is the better option?

Thanks

 

 

 

 

 

Login or register to post replies.

ashleyc's picture
Replies 5
Last reply 2/1/2016 - 3:47pm
Replies by: mary1233, ashleyc, Kim K

Father has mucosal melanoma. Had a recurrence after four years from diagnosis. It was removed surgically and now our options are watch and wait or choosing chemo with interferon or Cisplatin and Temozolomide. Anyone else been faced with this decision have any advice? I did ask about ipi but was told there was only one study using it as adjuvant therapy, the dose seemed too high and risky, and it was for those in stage III with a positive lymph node. So oncologist made it sound like it wasn't an option. Thank you to all in advance. 

ashley chavez

Login or register to post replies.

Okay, so I was at work today and I noticed a black dot under the palm of my hand. It's about the size and looks like a sharpie mark on my hand. I could almost swear that it used to be a freckle but i can't find any proof (previous pictures) I didn't have any pictures of my hand where the dot is. 

What im asking is: is this worth going to a dermatologist to get checked out? Could it be a blood blister I just realized i had? Or should I just give it time and see what happens from there? I am currently flipping out and I don't know what to do 

anything helps I appreciate it a lot 

please email me personally: jrvermilya@me.com

i will then send a picture as I can't figure out how to tag it in the forum. Much Thanks

Login or register to post replies.

I am getting opinions on treatment for a 1.3 mm melanoma on my leg that was removed and microscopic cells were found in 1 of 2 sentinel lymph nodes that were removed in my groin.  My surgein is recommending all the lymph nodes be removed in that area - I am deathly afraid of getting lymphodema.  It seems some people wait and see and then end up doing it.  Please tell me if you had it, did they find melanoma in your other lymph nodes, do you have lymphodema?  Is it as bad as I think - should I do it?  Thank you to all - I have been so humbled by this experience that has changed my life 3 weeks ago,  I am blown away by the generosity and kindness of strangers to help each other.

 

God Bless you ALL!!!!!

XOXO

Login or register to post replies.

Renate's picture
Replies 5
Last reply 1/27/2016 - 2:10pm
Replies by: Renate, AllysonRuth, Janner

I had a 1.3mm melanoma removed from my thigh and microscopic cells were found in one lymph node.  They did a MRI and PETCT Scan and the results were clean except there is a gumball sized hotspot on the PET Scan on the opposite side of my pelvis where the melanoma was found.  My dr thinks it is probably metabolic activity in my small intestine but to make sure they are going to do a CT Scan to see if its solid - Has anyone had anything like this???  This waiting and worrying is hard to handle.

Login or register to post replies.

Pages