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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dmturner's picture
Replies 4
Last reply 11/2/2016 - 12:19pm
Replies by: dmturner, debwray, laulamb

Home from hospital had 2 satellite spots positive for melanamo today.  Back of my heel, original source bottome of heel.  I also, had skin graft taking in right groin area same place as SLNB, doc also took one swollen lymph node from same spot.  I am just wondering if the node was only swollen cause my original was healing via secondary healing.  (No skin graft just open would).

I have to keep the bandage on till Monday.  I guess that is when I will get results from lymph node.

Had to postpone last Yervoy treatment.  Did it even work???

Anyone else had satellite tumors close to orginal?

 

-Donna

diagnosed in June, 3a

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SOLE's picture
Replies 24
Last reply 11/3/2016 - 1:37pm
Replies by: SOLE, cancersnewnormal, Polymath, Anonymous, KDub, Bubbles, landlover

This may be yet another topic that has been discussed but I sort of found out a real inspirational survivor story tonight. Some of you may already have seen and read it but this came at the right moment for me it seems.

https://tedhowardnz.wordpress.com/about/

Have a listen at his TedTalk (audio and pdf follow up). This guy has something to deliver. And it comes from a scientific and analytic mind.

Tell me what you think

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Anonymous's picture
Anonymous
Replies 7
Last reply 11/4/2016 - 10:22am
Replies by: cancersnewnormal, Hukill, Anonymous

Hello,

This is my first time posting and I'm hoping to get some advice on my most recent diagnosis. 

I have just been diagnosed with my 6th Melanoma. My first one 15 years ago was quite deep (3+mm) but with no spread. The second was 1.2mm and 3rd in-situ (2011), then 3 this year have been in-situ. I understand the recommended excision margins for in-situ are 5mm, but I've opted out of this for the most recent two (biopsies had a small 1-2mm clearance). This is against the Drs recommendation, although he has told me that in-situ can not become invasive and at worst, there is the chance of local recurrance, in which case I would opt for an excision. I'm 38 years old and he's never come across anyone my age that hasn't had those extra margins cleared (he's had older patients opt out).

My reasoning behind not going ahead with the further excision is because of my emotional/mental wellbeing — I just don't feel I can be cut into again this year! (3 biopsies + 1 wider excision). That may sound silly (as I know there are people going through much worse than this) or even reckless, but for some reason it's hit me really hard and I've been suffering with panic attacks and anxiety because of it.

I guess my question is — am I being completely reckless not having this done? Is there anybody out there, or any statistics that back this up, whether in-situ can become invasive. I feel there is so much conflicting information out there, and at the same time no answers to this subject, and Melanoma as a whole... it's frustrating and scary. 

I hope someone can offer some advice here. 

Thank you.

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bleakstrom's picture
Replies 3
Last reply 11/1/2016 - 9:23pm
Replies by: Kim K, Anonymous, SOLE

Wondering if anyone else has felt somewhat confused about the prognosis of the node-negative disease, i.e. stage I/II. It seems that many sources and practicioners nowadays give a highly optimistic outlook following a negative sentinel lymph node biopsy (SLNB), speaking of a cured disease or in similar terms. On the other hand, research papers available online indicate rather notable recurrence rates for node-negative patients--in the ballpark of, say, 15%.

Of course, patient databases used to estimate 10-15 year recurrence/survival rates automatically span a few decades back. The SLNB method has been routinely adopted starting mid-90s to my understanding. Since then, SLNB has been carried out apparently with varying protocols regarding the use of radioactive tracing, no. of sections taken from biopsied nodes, and the use of immunohistochemical staining to detect melanoma cells.

I would assume that a state-of-the-art SLNB today would encompass all of the above mentioned steps, where the entire biopsied nodes would be sectioned for immunohistochemical staining. Thus, I would further speculate that the procedures are on average more accurate today than over the course of the past few decades, leading to a lesser amount of false-negative findings.

Has anyone come across any educated guesses as to what the impact of this should be on the historical-based recurrence/survival rates? Or has anyone had their excellent prognosis explained to them, perhaps, citing these kinds of factors?

 

 

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youngann's picture
Replies 9
Last reply 11/1/2016 - 5:16pm

I'll be having my 4th Ipi infusion this coming Wednesday and, today, I had my second set of CT scans. I'll be seing my oncologist on 11/17 so probably won't know the results until then.

Fingers, toes and everything else crossed in the hopes of good clear scans.

Ann

 

http://www.cafepress.com/daybreakdesigns

Home of the original "Crappy Shirt"

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Anonymous's picture
Replies 1
Last reply 11/1/2016 - 5:54pm
Replies by: jpg

   Go to:  www. shadeitgreen.org

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miaka618's picture
Replies 2
Last reply 11/1/2016 - 8:04am
Replies by: miaka618, youngann

I posted a while ago about insurance problems with my adjuvant treatment. I am happy to report that everything has been resolved and I no longer owe a quarter of a million dollars. :-D 

My aunt did get a second opinion on her moles and everything came back negative on that. 

Even though I only had one dose of ipi, I did develop issues with my pituitary gland approximately a month and a half after the treatment, so now that insurance is back in order, my treatment is still on hold to see if my pituitary will bounce back. Oh well. The wait continues. I get to have another scan soon so let's hope it comes back clear! 

I'm glad I found you guys. This site is a treasure trove of life experiences, and I may have been more worried about the headaches I was having if I hadn't read about so many other people experiencing the same thing with the ipi side effects on the pituitary. I wanted to say thank you to that. On that note, I may have to find a different local oncologist. She didn't believe me when I told her it might be my pituitary gland when I came in for the headaches. She didn't even do any blood tests to check hormone levels. She scheduled an MRI for 3 weeks later, and only after I was urged to go to the ER for the MRI by my specialist out in Madison did I finally get some relief. I'm telling you, those headaches were no joke. There was no way I could wait another 3 weeks. I'm feeling pretty good right now. Tomorrow I get to go for a drive to see how my hormones doing. I'm glad the weather is still nice. :-)

April 

~April

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Anonymous's picture
Replies 1
Last reply 10/30/2016 - 2:00pm
Replies by: youngann

Hello, i just joined this forum. i used my actual name as the username to log in.   I would like to use a nickname to post however.  (not aninymous).

Is this possible ?  or are my only choices "anonymou"s or" username"?

if my posts force username, then can i log/sign in again under another user name?

 

thanks much

 

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snow white's picture
Replies 11
Last reply 10/31/2016 - 9:56pm

Hi everyone,

Good news: Dad finally got to come home from the Rehab Hospital on Friday.  He is doing well, walking on his own (slowly) doing small sets of stairs, bathing etc.  Its going to take some time before he gets all of his strength back, but I have faith that he will.  He will be having therapy at home to help with this.

He had all 82 staples taken out of his head on Friday.  On Monday 10/31 he will have a port o cath placed, then on Tuesday 11/1 he has his first dose of NIVO. Finally!!!!  I am hoping that it isn't to much time in between the Gamma Knife and first dose of NIVO for the benefit of the absopal effect. We shall see.

I will update to let you know how the first dose goes.  Fingers and toes crossed that it goes well.

:)

xo

Jennifer-- Dad has stage IV Mel. No primary. Treatment: Gamma Knife,15 brain mets, Craniotomy to remove 3 large tumors in brain. Receiving treatment @The Angeles Clinic

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Anonymous's picture
Replies 14
Last reply 11/8/2016 - 5:22pm
Replies by: Ed Williams, SOLE, Anonymous, laulamb, youngann

folks my husband has been diagnosed with stage IIIb melanoma with ulceration and 50 cells of micro mets found in his sentinel node biopsy.  we are trying to make some decisions on next steps.  one is CLND or no CLND which i posted seperately.

Another decision is what kind of adjuvant therapy. one doctor (known in the field ) is reommending 3mg/kg IPI (not standard for stage III).  he is recommending the lower dose due to toxicity of 10mg IPI.  another doctor is saying he would go with standard 10 mg IPI for stage III.

To decide, i suppose it would help to know the history behind what led to the standard dosage of 10mg/kg for stage III vs 3mg/kg for stage IV?  was it something random like at the time of IPI trial for stage III, the 3 mg dosage was not yet proven for stage IV? or is it that they believe you need a stronger dose to get rid of the mico mets vs tumor mets?

we also will try to get into IPI vs PD1 trial and see if get PD1.  Are there different dosages of PD1 in different trials?

what else?  should we ask for CTL4 and PD1 response staining before deciding?  

what about PDL1 testing?  can we get anti-PDL1  treatment anywhere?

thank you so much for your guidance.

 

 

 

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Anonymous's picture
Replies 6
Last reply 11/7/2016 - 2:37pm
Replies by: Anonymous, momof4boys, SOLE, Bubbles

folks, my husband is diagnosed with stage IIIb melanoma with a fairly aggressive initial mole biopsy with ulcerationand  2.9mm and positive sentinel node biopsy with 50 cells found.  Mole was on his thigh and sentinel biospy from his groin area. We are at a cross roads to decide for or against CLND. One prominent doctor says NO as there is no data to prove that CLND improves survival chances.  Another prominent doctor says YES because he has a deep hip lymph node which if left with any mico mets might grow and be the channel for travel to the rest of the body before  it is caught and removed with CT scans.

The doctor who is recommending surgery would perform robotic surgery for the deep node removal.  He works with a robotic expert surgeon directing him during surgery.  My husband would be patient number 10 for the robotoc surgery vs open surgery for melanoma.  Surgeon says choosing robotics is a no brainer as it makes the recovery process much easier.

We need to decide this week if we do the surgery or not and if yes, is robotic surgery really a no brainer?

I will be posting a seperate question on opposing recommendations for him for adjuvant therapy.

I am new to this site and hope to get some guidance from all of you who have traveled down this path before.

 

 

 

 

 

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Bruce Davis's picture
Replies 1
Last reply 10/31/2016 - 12:03pm
Replies by: SOLE

Just felt I had to share my experience as I read a simular one about a year ago or so that gave me inspiration. I've had it easier than a lot of stage 4 people. Interleukin 2 wasn't much fun and either was the "6 months to a year " to live diagnosis from 3 sets of Oncologists in 2011. No primary location was ever found. A nodule appeared in the left arm pit after "leaning" on crutches for 6 weeks following a hip resurfacing.The 6 cm nodule along with the remaining lymph nodes were removed and radiation followed.About 2 months later nodules presented in the lungs. The largest being 5 cm. Being BRAF+ I started Zelboraf in September of 2011. After a few months the CT scan showed the nodules shrinking. After 4 years and 9 months of Zelboraf, the Oncologist let me stop taking it. A 3 month follow-up CT scan showed no progression of disease. The CT images might be mimicking small nodules but could represent scar tissue. I heard the protocol now is to stop Zelboraf after 2 years.

Being off the Zelboraf for 3 months most of the side effects are gone and I'm getting back to normal. I realize melanoma could resurface at any time, but I'm very thankful for every day! Hope this information helps.

Bruce

 

Presently it's "Don't give up."

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Anonymous's picture
Anonymous
Replies 2
Last reply 10/31/2016 - 4:43pm
Replies by: Tim--MRF, Anonymous

I have had like a purple like stain under my toe since at least July. I didn't do anything about it because I thought it was a bruise from too tight shoes.  But when it didn't go away I googled it. 

I am worried about amelanotic melanoma. I went to the doctor asap. But it has taken 15 days just to get to the point of scheduling a biopsy.   The derm bearly looked at it and wanted a biospy.  It really isn't brown or black but more like purple / red. 

It is about 6mm at its longest point. It is shaped like a triangle but not 100% asymetrical... but about 90% asymentrical.  I don't think it has moved or changed at all in the 6 month period.  It does not look like it has grown with the nail but I admit I haven't been looking.  I have been taking photos since I discovred it and I can't see anything changing.

I am having a hard time with the doctors. I can't seem to get them to give me an appointment that is reasonable. My derm said I shouldn't have the biopsy any later than this Wednesday but they want to do it the third week of November. 

My derm is kind of siding with them. But I feel like that is a month and a half and I honestly have no idea when this started. I just wans't paying attention in the winter to my feet. 

Anyone know how long it takes for melenoma to spread? What would be considered getting it early? I have no pain or itchiness. Nail is in good shape.  My best guess is that this is related to this winter when I started wearing shoes that were too large and my foot kept sliding around possibly banging on the toe. 

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Anonymous's picture
Anonymous
Replies 3
Last reply 10/31/2016 - 7:23pm
Replies by: Anonymous, Janner, Cathy M

I had a quick question about melanoma.  My husband developed a tiny mark maybe 2-3mm on the bridge of his nose around 2010. It came after a trip to the beach. It is dark brown and looks like a zigzag if that makes sense.  He has been to the dermatologist and they never mentioned it.  I asked him to get the spot removed and he won't.  The spot has not changed or grown since 2010 but just looks weird to me because of the zigzag shape.   If this was something sinister would it have grown or changed  over the last 6 years? Thank you 

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storymonkey's picture
Replies 1
Last reply 10/30/2016 - 11:01am
Replies by: Ed Williams

hi all,

i do not see any posts on this forum about using bovine lactoferrin as an adjuvant. there are a number of papers showing indications of efficacy. i'm wondering if anyone has used it and what kind (e.g., apolactoferrin or the semi-iron-saturated kind).

studies seem to suggest that completely iron-saturated lactoferrin is best but that seems impossible to find on the consumer level. 

the kind that is in stores is bovine apo-lactoferrin (0% iron saturated) and seems more useful for infections than immune modulation according to some of the articles i found. this is one: https://www.ncbi.nlm.nih.gov/pubmed/18268518

anyways, just wanted to get this lactoferrin thing started.

btw, this is a big issue for me currently as my HMO only pays for Interferon for IIIa stage and i'm not thrilled about interferon with it's side-effects - especially since it may not actually work all that well in terms of overall survival.

thanks,

kevin

 

 

 

 

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