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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CHD's picture
Replies 5
Last reply 11/14/2014 - 11:09pm
Replies by: RJoeyB, CHD, Anonymous

One of you awesome folks posted a link to some informative You Tube videos in one of these posts in the last few weeks, which I forgot to write down, and I have been searching for that post to no avail.  Does anyone remember where that was, or could you re-link to those videos here, or in fact if you know of other informative videos, I'd love to hear about them.  I am interested in videos ranging all the way from the basics through the more complicated treatment options.  

Thanks so much!

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Replies by: Charlie S

Fly high, DT!  Sure gonna miss you, my friend!

 

~Lisa~

Life is NOT a journey to the grave with the intention of arriving in an attractive & well-preserved body, but rather to skid in sideways, champagne in one hand, strawberries in the other, body totally used up & worn out, & screaming WOOHOOO, WHAT A RIDE!!

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Colleen66's picture
Replies 4
Last reply 11/9/2014 - 5:07pm
Replies by: Colleen66, Janner, Anonymous

Is there any difference between Nodular and Cutaneous Mel?  And would a Second Primary (other leg than original) be the same type (look the same) or be different?

Thanks guys...Colleen

Live!

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yazziemac's picture
Replies 8
Last reply 11/10/2014 - 11:06am
Replies by: Anonymous, yazziemac, kylez, BrianP, RJoeyB, Marianne quinn, Bubbles

Hi 

I posted a few days ago with news that my husband, Pete, was just diagnosed Stage 4 because of a brain met.  The radiation oncologist told us very bluntly that he will live 18-24 months.  Now I read all sorts of posts on these boards of people with Stage 4 multiple mets who live much longer than that.  What gives!?!  Was the guy just a jackass?  Or am I deluding myself with hope that Pete could live for years yet?  I feel confused and, frankly, kind of mad.  We are waiting to meet the with oncologist (not the radiation oncologist) on Nov 18 and he'll talk to us about immunotherapy.  The radiation oncologist obviously talked with us only about radiation options. Anyways, I'm feeling angry tonight.  Angry, sad and a bit alone.  Thanks for being here for support. 

Yasmin

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csellers23's picture
Replies 4
Last reply 11/11/2014 - 8:10am

My husband took yervoy 2 days ago and i havent been able to get him out of bed since. He had been on mek trfi combo but has been off them for 2 days. Hes hot then cold his body hurts everywhere. He said its like the flue times 10. Has anyone been through this since there first treatment. I dont know what to do.

Crystale sellers

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My mother has seen her melanoma seed to the surface of her skin over the past five months. The tumors are localized to the original limb (leg), but are quite painful. The lymphoma she experiences does not help the pain she is in. She is a candidate for a procedure called a limb perfusion, which cuts off circulation to the limb and infuses it with chemotherapy drugs directly. This includes removing remaining lymph nodes. It is apparenlty a considerable operation to recover from but has the potential to cause the seeded tumors to recede for an average of 10 months. 

If anyone has experience with this procedure or caring for a loved one with seeded melanoma I would be very grateful to know. We are very concerned with how to reduce her pain. 

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Patina's picture
Replies 4
Last reply 11/9/2014 - 3:01pm

My Mom went in earlier in the week for her CT scans and the tumors are continuing to shrink or have completely disappeared.  When all of this started she had tumors in her: lungs, kidneys, liver, adrenal gland and 18 or so tumors on her scalp and one tumor the the size of a birds egg on the back of her neck. In addition she had 25 brain mets treated spanning two separate occasions (12/9/13 8 treated, 4/15/13 17 treated). 

Her doctors and we are thrilled and its been less that 1 year since her diagnosis and the start of treatment (12/9/13). She's done fantastic with Gamma Knife followed up with starting Yervoy within the week.

During this week's visit her doctor gave us some numbers to go along with what he believe's is her outlook is. Here it is:

Based on how she has responded to Yervoy (very quickly & all tumors) he believes that she is firmly in the group of people who, at 5 years, had needed no other treatment.  - 92% after 5+ years of tracking have had no other treatments and the 8% who needed additional treatment seem to respond to Keytruda ,as well as or better than, they did to Yervoy. So, we know the next step if one is needed.

Considering where we were last year and the fact that her brain mets were completely missed by the original radiologist she is one very lucky woman.  

I hope one day everyone has these results. Medicine/Science has come along way and the treatments can only get better from here.

 

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Replies by: Anonymous, Bubbles, BrianP

Dunno if anyone is still interested in Antibody Drug Conjugates but they have trials for them at Sarah Cannon in Nashville. I'm still planning on TIL first but thought I should mention it.

http://sarahcannonresearch.com/for-patients/search-clinical-trials/melan...

Artie

 

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5dives's picture
Replies 15
Last reply 11/11/2014 - 8:49pm
Replies by: Anonymous, 5dives, Teochasse, Squash, Janner, Linny

Hello all,

There is no better place I can think of to be talked off a ledge than right here. :-) I had my WLE / SLNB on July 10th (I'm 4 months out) and I had one micro positive lymph node in my groin. I have been advised to leave my nodes intact and to watch carefully, which I am fine with...although it's difficult to manage worry and stress. 

Saw my surgeon here in Chicago on Thursday. As he was checking my groin lymph nodes he said "Hmm...this could be a lymph node, or it could be water collected following your surgery. Your September scan was clear, and you're seeing your medical oncologist in December...let's keep an eye on it." 

In that moment, I felt fine with his decision to "keep an eye on it", but of course now I'm freaking out. 

Questions: 

1. Since I had a scan in September and it was clear, but I definitely have a swelling in my groin now, what would be the next step to investigate a possibly swollen node? Needle biopsy? Ultrasound? How does this work? 

2. Any thoughts on how a lay person such as myself might differentiate between a "problem" node and a "just fine" swelling? I have some very mild aching in my lower abdomen, nothing I would normally notice outside of the fact I have melanoma. I guess it could definitely still be surgical recovery.

3. Appointment with med. onc. is on Dec. 2. If the node is still swollen, what should I be asking for? 

Thank you very much. 

Best, 

Elaine

http://melanomadame.blogspot.com/

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Anonymous's picture
Replies 7
Last reply 11/11/2014 - 11:34am
Replies by: Anonymous, oldblue, dodgedh2, Randy437, Carole K

Anyone here with mets (IIIC - IV) get long term success with surgery alone? 

I mean, 5+ years without recurrence.

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Steve2142's picture
Replies 7
Last reply 11/8/2014 - 4:13pm

My BRAF results came in and I am negative so yervoy is next in line for my very very advanced melanoma.   Prior to that though, they need to radiate 5-6 brain mets via SRS.  They are suggesting that we do both at the same time to see if yervoy results are a little better.  Anyone heard of this?  Any thoughts?  Thanks

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arthurjedi007's picture
Replies 16
Last reply 11/10/2014 - 1:33pm
Replies by: RJoeyB, Carole K, arthurjedi007, Mat, Anonymous, odonoghue80, tschmith

Just got a call from June Kryk. She's saying I need a 4 week washout period before I first see them. Does that sound right? The paper work form said to stay on my current treatment until I get accepted into a trial. I would have thought the 4 week washout period would be after the first visit not before. Am I missing something?

Basically otherwise she explained the process like I expected. They get all the scans and stuff they need. I go for the first visit where they remove one tumor. They grow the cells and I go home. Once the cells grow which she said varies from 3 to 6 weeks. Then I go back for a second visit for 3 weeks. Week 1 is the chemo to wipe out my white blood cells. Week 2 is getting the new cells and 3 days of IL-2. The rest is recovery. The 3rd visit is 4 weeks later for scans.

Oh for those who know her June Kryk is retiring and the lady who called me yesterday Jessica Yingling is her replacement.

Artie

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MixtaJones's picture
Replies 5
Last reply 11/10/2014 - 2:59pm

Hey everyone,

Long time since I have been on here. As a update I finished my last Yervoy treatment on July 11th. I just had my first 3 month CT scan and the orginal tumor is no longer there and there are no signs of it spreading to other  parts of my body. YAY!

My question is for those of you that have had Yervoy treatment and it has failed. Did it fail imediatly as in the tumors never shrunk or did it work initially then tumors came back further down the road? I am obviouly glad that the scans are clear but still not completly relaxed becuase I don't know how yervoy work long term.

Philippians 4:13 "I can do all things through Christ who strenghtens me"

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