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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blden2186's picture
Replies 1
Last reply 5/31/2015 - 10:35pm
Replies by: Bubbles

Well ithas been over a year sine I was on this site.  I have been stage 3C for 3 years but have been melanoma free for almost two.  Now I have another tumor on my leg - the 4th round.  I may be getting intothe Tvec trial.  Meeting with oncologist Thursday.  This is getting old. 

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Bubbles's picture
Replies 1
Last reply 5/31/2015 - 10:15pm
Replies by: Bubbles

I hate that anyone may have the need.  But, if you should...these trials may be worth looking into.  Both are reported to still be recruiting.  Call the trial coordinator if you are interested!!!

Ipi plus Nivo followed by ipi:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/05/asco-2015-new-trial-for-melanoma-brain.html

Pembro/Keytruda:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/05/asco-2015-pembrolizumab-keytruda.html

Wishing you well.  Celeste

 

chaoticallypreciselifeloveandmelanoma.blogspot.com

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DZnDef's picture
Replies 4
Last reply 6/1/2015 - 1:38pm
Replies by: Anonymous, Bubbles

This looks promising.  Especially the test to see who would most likely benefit before starting treatment.

 

 

http://www.sciencedaily.com/releases/2015/05/150531100051.htm

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

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Anonymous's picture
Anonymous
Replies 3
Last reply 6/1/2015 - 2:15am
Replies by: MattF, ncdaniel, Patina

My father started Yervoy 2 wks ago and has really gone downhill fast.  His left mouth has been droopy the past few days and he refuses to call the oncologist in fear of being hospitalized.  He's due for his 2nd infusion this Thursday but seeing how weak he is, and how awful he feels, I'm wondering if they may cease treatment.  I'm assuming it's his brain mets causing the droop.   Any advice would be much appreciated.  Thank you all.

 

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yazziemac's picture
Replies 14
Last reply 6/2/2015 - 7:11pm

Just wanted to let you know that my sweet Pete passed on to the next life on Friday night, at home, in the arms of his family.

 

Yasmin

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Mhardes's picture
Replies 6
Last reply 5/31/2015 - 12:35pm
Replies by: Mhardes, Janner

I was reading some old post and I read that you had a support group for stage 1?..just wondering if that was true. I just recently had my we 1cm (last Friday) and it was on my calf so they ended up doing a graph. I am healing and next Thursday I see whether the graph took and get my stitches out. I read that the first year is tough and I guess I have so many mixed emotions. I am so glad they got it at stage 1..and it was part of my normal checkup as I have had a couple basil cell..prior to this. I guess you just get so scared because after you get diagnosed you notice so many different things on your body and you thought you were already doing a good job. I have a small mole like purple that my dermatologist has seen several times it has never checked size or color and when he found the other (during that examination) he told me I could keep it ..like he always does...he told me the last time I could keep the one he diagnosed melanoma this time...as he noticed a change from last time. I had not paid much attention as he had said it was fine ( I have done much more reading since being diagnosed) I guess I write this as I wait for next Thursday....you just hope he didnt miss anything the last time..and I do feel good about being looked after closely now..and also have gotten a mole mapping app on my iPad..so I can take pictures..you go through a lot of emotions and I just wanted to make sure my thoughts were correct. I have read over and over that when you are in the game..it is critical to make the right decisions...and I have saw your posts a few times where you said vigilant..but not paranoid...I think that line right now is blurred a little.

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hbecker's picture
Replies 2
Last reply 5/30/2015 - 9:59am
Replies by: hbecker, BrianP

This article about a kidney cancer patient talks about melanoma research. Very hopeful.

http://www.washingtonpost.com/national/health-science/unleashing-the-imm...

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Hi all,

Wanted to see if there was some insight on where to go, best place to get treated, what to expect. I'm playing the waiting game with my doctors to see what next steps might be.

I had an initial biopsy of the affected area July 2014... biopsy can back negative for cancer, positive for Lichen Planus. May 2015, same area was biopsied again... Biopsy came back melanoma positive... the unusual part of the melanoma is that it doesn't have any dark spots (aka colorless)

Was hoping for some insight as to where it would be best to treat this type of melanoma... I have a few options...

- Univeristy of Miami (Florida) Sylvester Cancer Clinic

- Northwestern University Chicago

- Moffitt Clinic Tampa, FL

Also, any general advice would be very helpful.

Thanks!

Juan

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I've been deep in the process of getting into a couple potentially good trials. So far that's still going on.

But got a mri of my spine. Two places have soft tissue masses in the spinal canal. One says only minor encroachment. Fortunately we have caught them earlier this time unlike last year when I was almost paralyzed. So although they have narrowed the canal some im not in immediate danger of being paralyzed this time. I can actually walk and feel fairly ok. Granted reading the report where it says every bone in my spine has something wrong is a bit unsettling.

I know if I don't get this taken care of now I'll probably be in the good part of a trial and this comes to haunt me. So I have to get this done before I start a trial.

His nurse says it is up in the air but he is thinking about burning it. I guess that would be radio frequency ablation. I was wondering if it works can this procedure be done again if in say x months I need it again? Unlike radiation which I was told last time can only be done twice in the same spot. He also does the cryo, lasers and everything else is at his disposal.

My non local doc at mayo was thinking cryo and there is a doc there that all he does is cryo on the spine. But I'm thinking of canceling that if I like what this local doc has to say Monday. I must admit the local doc did a lot of detail with the mri report and comparing with several other older reports so I'm getting more comfortable with this local doc.

Is there anything else I should know about this? Or questions I should be asking?

Sorry to be posting this at a time when others are going through so much but I really need some thoughts on this. Maybe I'm even crazy for wanting to do this treatment. My onc first was saying lets just wait and see if it gets bad enough and if so we'll try surgery again. I bugged him enough so he refered me to this interventional radiologist who looks like he has a really good resume on the web. It's dr jennings at Siteman, wash u, barnes in saint Louis.

Thanks.

Artie

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RGal's picture
Replies 5
Last reply 5/28/2015 - 4:12pm
Replies by: arthurjedi007, RGal, Anonymous

My father started yervoy 2 wks ago and is very unfomfortable.  Nauseous, off balance, not sleeping, not eating.  He's supposed to go back in a week for another infusion.  Is there any medication that could help relieve some of his symptoms in the meantime? He is stage 4, mets to brain and kidney and who knows where else now.  It's so hard to see him so miserable.  

 

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AshleyS's picture
Replies 17
Last reply 5/30/2015 - 8:48pm

I met with my docs at MD Anderson today to hear about my scans from yesterday. I made it through 3 of the 4 dual infusions (Yervoy & Opdivo). I got really sick and they took me out of the trial a few weeks ago. 

 
However.....it was all super good news today! 
 
I saw my dermatologist first - no new moles, etc. Actually, some of the moles on my body shrunk/lightened. 
 
Then I saw my melanoma specialist. All of the random tumors on my body are gone. My liver lesions have shrunk dramatically - I'd say, by looking at the pictures, by 80-90%. It was amazing to see!!!!!!!!!!!!!
 
Tonight I had a Yervoy infusion. Not the combo, just the Yervoy alone. We are leaving Texas this weekend and I'll start the Opdivo back in ND in 3 weeks. (My 2 year old is excited to sleep in her 'purple room.')
 
Ever since I found a mass in my groin at 20 weeks pregnant last July, I've received bad news from all my biopsies and scans. It feels great to get positive news! We are super happy tonight. :D
 
Ashley

 

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Anonymous's picture
Anonymous
Replies 12
Last reply 6/3/2015 - 10:58pm
Replies by: Anonymous, yunielth, Hollywood, Janner

Hi everyone.  I am a 30 year old male and I was recently diagnosed with stage 1b melanoma/ mitotic scale 2/ Clarke level 2/ no ulceration.  They did not do a SNLB because the mole was located in the upper center part of my back.  Anyways,  I feel like I want to do a SNLB but I don't know if it's possible since I am a month out of wide local excision.   Anyways, can they reopen me up and check the lymph nodes?  I would appreciate if anyone with a similar situation can put in their input.  Thanks- Mark

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yazziemac's picture
Replies 10
Last reply 5/30/2015 - 7:29pm

Hi

I just wanted to update you that my husband, Pete, is receiving "hospice at home" care and that there is no longer any hope for treating his cancer.  It has spread through his cerebrospinal fluid and he has tumours everywhere.  He is currently on a pain pump and has ports to receive his other medications.  We have much support from our palliative care community at home and he is currently not in pain, although he sleeps the vast majority of the day.  We did everything we could to try to combat this beast, but it just wasn't possible.  At this point, I am praying for a merciful, quick passing for him.  He is paralysed from the waist down due to spinal tumours and I am hoping that he passes before the upper spine tumours cause him more complete immobilization.  Thankfully, he is quite lucid when he is awake, so we are able to communicate with him in a meaningful way. 

Yasmin

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Brian_D's picture
Replies 14
Last reply 6/1/2015 - 8:48am

I was originally diagnosed with stage III melanoma in March 2011.  Had a recurrence this past Setpember with a large brain MET.  I had a craniotomy and treated with Yervoy.  About a month ago we found mets in brain and lungs.  Started on Keytruda and had gamma knife radiation last week.

I am a young attorney and it is a stressfull job.  Although I am not experiencing any debilitating side effects at this time, it is taking an emotional toll on me.  I am having trouble concentrating and the stress can be overwhelming.  I want to get a sense of what is typical in this situation.  Should I plow ahead and do my best to work through this?  Should I consider taking some time off to concentrate on getting my mind and body right?  I would love to hear everyone's thoughts and personal experiences.

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eturner82's picture
Replies 9
Last reply 5/29/2015 - 12:57pm

Hi guys

On 5-5-15 my husband had a CT scan which showed progress and new bone mets and was taken off PD-1 his doctor was rushing all paper work and scans to NIH and they have been very fast to respond.... In the mean time he's been losing feeling in his legs and can not walk up steps..... I could not get him in the house on Friday so we called his doctor at UVA, he said bring him ASAP he is being admitted.... MRI shows a bone lesion in the area of left frontal area with meningeal contact..... As if that was not bad enough he also has melanoma in the spinal nerve roots.... No spinal tap has been done but in the MRI you can see it!!..... I NEED ADVICE, PLEASE HELP (and yes i've read the older posts on here about lepto)

Thank you

Emily

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