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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Jewel's picture
Replies 13
Last reply 11/16/2014 - 1:50am

My husband will be starting Yervoy in the next couple weeks. Of course my main concerns are to be on the outlook for any and all side effects. Can you please share with me your experiences and the things you may have had in the house to help combat them. Trying to be as best prepared as I can. Most importantly did it stable your disease? Thank you all so much for your help.

Jewel

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democat's picture
Replies 4
Last reply 11/15/2014 - 11:28pm

Does anyone have experience with Kaiser So. Cal.? Specifically Drs. Sherry Hsu and Helen Moon?  Also, has anyone been able to get Kaiser to pay for a second opinion outside of Kaiser>

 

Roxanne

Roxanne

Stage IIIa/IIIb

since 1/2013

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angtom's picture
Replies 10
Last reply 11/15/2014 - 2:56am
Replies by: RJoeyB, Anonymous, sis1971, MelanomaAnkara, angtom, Patina, ecc26, WITom

I have a question my husband had his first ipi treatment 2 weeks ago he is stage 4 melanoma braf neg mets in lung and trunk. He had his tumor harvested yesterday for the TIL trial  at moffitt. We were surprised at how much the tumors had shrunk as was the doctors, the original spot to harvest the tumor which was the largest was almost to small now to get a good sample they wanted 2 cm but said 1 cm would do so they also took another sample from his abdominal wall which had shrunk also has anyone else had this kind of reaction to ipi after first dose?

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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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StephyD83's picture
Replies 4
Last reply 11/14/2014 - 7:14pm
Replies by: StephyD83, Janner

Hi Everyone--

I was Dx with Melanoma In Situ in March 2014 & since have been dealing with enlarged lymp nides etc. In Augest 2014 I had a shave biopsy of a mole on my lower back that I had a long time but became raised suddenly. It came back as begin compound nevus with congenital features. About 1 month later a black dot appreaed in the center of the scar now it is about 1/4 of the way back covering the scar & is very black & itches really bad. It was a large mole 1.6 x. 9 x.1. Should I be concerned?

Thanks!

Stephanie

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jennifer83's picture
Replies 6
Last reply 11/14/2014 - 7:09pm

I got my pathology report and would love it if anyone can help me determine anything from it regarding staging or advice, etc...

 

DIAGNOSIS:

A) Skin, Right mid back (shave)

Malignant Melanoma, Superficial Spreading Type, Clark's Level III-IV, Depth of Invastion 0.70 MM, extending to peripheral margin (does this just mean they didn't get it all?)

Synoptic Report:

Specimen: Laterally: Right

Tumor Size: Grossly Indeterminate

Macroscopic Satelite Nodule(s): Interteminate

Histologic Type: Superficial spreading

Maximum Tumor Thickness: 0.70 MM

Ulceration: Not identified

Margins: Involved by tumor

Mitotic Index: 1 per MM squared

Microsatellitosis: Indeterminate

Lymph-Vacualr Invastion: Not identified

Comment: Key poritions of this care were reviewed by one or more additional dermatopathologists

Gross Discription:  Specimen labeld s "R mid back" is recieved in formalin and identified with two patient identifiers.  The specimen consists of a single portion(s) of  ___ skin (I can't identify the word before skin), measuring 0.7 x 0.5 x 0.1cm.  The skin is almost entirely surfaced by a 0.5 x 0.5 cm brown lesion.  The margin is inked.  The speciman is trisected and entirely submitted in one cassette(s) (NC).

 

Any comments on this would be great!  I'm headed to a general surgeon on Monday to consult on a WLE and SLN biopsy.  

 

Jennifer

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csellers23's picture
Replies 5
Last reply 11/14/2014 - 9:52am

My husband 39 has cancer in his bones 3 one spine one on hip one on ribs. Also 7 in his lungs and 2 the size of grapes and 7 the size if bbs in his brain. We have done full brain radiation and the tafinlar/mek pills. The pills shrank some others stayed the same and 3 got bigger. After 4 weeks they took him off them and onto yervoy. He was put in ER for high fever 103 that wouldnt break. After being put on steroids we got his fever down. That was after his first treatment. Is there anyone out there who has been through this for along time or even became ned? We have 3 kids and one will be here next month. Anyone plz. Thank you.

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jennifer83's picture
Replies 2
Last reply 11/14/2014 - 9:14am
Replies by: Tim--MRF, Emcjones1

I just found out two days ago that a mole on my back came back as melanoma.  My derm had done a shave biopsy and said it came back .7 mm with a Clark's Level III or IV.  I'm confused on whether I should be very concerned, or if this seems to be a superficial case.  My general practioner told me that she saw the pathology report and that it said it was superficial and has not spread to the lymph nodes or vascular system.  I asked my derm if it's possible to determine that with only a shave biopsy?  He said no.  I'm so confused!  

I go in on Monday to consult with a general surgeon who will be removing more tissue.  I'd love to hear what anyone has to say about this initial diagnosis.  I've been following this site since I heard the news and you all are so well versed and supportive.  

 

 

Jennifer

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kalisama's picture
Replies 4
Last reply 11/14/2014 - 7:02am

I am so frustrated at this point. I feel as though my onc is fighting me on my treatment plan and that we are working against each other instead of in tandum, with each other.

I live in a rural area, 8 hours round trip to see my oncologist, plus hotel stays, etc etc.

I feel that I am being forced in to a 3rd Yervoy treatment despite display of primarily skin related side effects. As some of you know, I've been trying to get to Keytruda since its approval. I'm aware some of this is FDA and some of this is my onc's near religious belief in Yervoy.

I've also been trying to get a referral to a neurologist from him as disease leans towards brain and CNS, LMD, with an occasional rogue muscle or breast met . I have very little confidence in his ability to treat CNS diseases, while this is a huge part of my treatment, I just don't think he's up on this. One month ago he said he would put this referral in motion. Now he's telling me it will be at least 3 months.

I see him this Tuesday. I'm at a loss, and am scheduled for Yervoy infusion that I don't want. I will finally be getting images on Monday, so I will be going in to Tuesday's appointment with more information than I've had in quite a while.

Is there a question in here? yes, any advice on how to approach your primary onc when you don't feel like they are on your side? have you ever fired a primary physician? he works very intimately with my radiation oncologist who i adore, and am nervous about jeopardizing that relationship. If I didn't live so far from this level of medical support, it would probably be a lot easier for me to move on. This onc has been treating me since April 2013 when I was admitted to ICU with golfball size tumors in my brain.

Any insights or personal experiences, appreciated as always.

bless,
kali

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rick1981's picture
Replies 11
Last reply 11/14/2014 - 4:17am

Hi everyone,

It seems like progress on cancer/melanoma treatment is moving at an incredible pace - which is a good thing. When my wife was diagnosed with Stage IV in June, our oncologist referred to Nivolumab as that "wonder medicine" he'd which he'd have access to - and only a couple of months later Pembrolizumab has been approved in the US and Expanded Access has open in Europe and Nivolumab is not far behind.

It's great to have options after the BRAF/MEK inhibitors (or in the future maybe as first line), but it thought it would be good as well to think even further out and look at what medicines may be next up in the Big Pharma's pipeline - so we can discuss this & potential trials with our oncologists.

So therefore this topic :)

(If it already exists, please point me in the right direction and this one can be closed).

The two melanoma medicines that have come to my attention very recently are:

BAVITUXIMAB: http://money.cnn.com/news/newsfeeds/articles/marketwire/1149321.htm. "statistically significant tumor growth suppression compared to anti-PD-1 antibody treatment alone in an animal model of melanoma". Trial with Yervoy/Ipi being started.

LIRILUMAB: http://www.mskcc.org/cancer-care/trial/12-224 Trial with Nivo. Ashley here on MPIP has mentioned this trial.

Good to know who's on these trials, what other medicines are being tested - and in the future to keep each other posted on Trial outcomes.

Best regards, Rick

 

 

 

 

 

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StephyD83's picture
Replies 6
Last reply 11/14/2014 - 1:26am
Replies by: JustMeInCA, StephyD83

Hi-

I was wondering if anyone here has gone to UCSF Melanoma Center in SF? I am going there for a second opinion and was looking for some feedback.

Thanks!

Stephanie

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jualonso's picture
Replies 1
Last reply 11/14/2014 - 1:21am
Replies by: Ginger8888

Hi folks,

Im now on Ipi treatment and i would like to start with Cbd oil but first i want to know if someone has do it with no bad reaction.

 

Thanks all

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arthurjedi007's picture
Replies 10
Last reply 11/13/2014 - 7:55pm

I'm having a lot of 2nd thoughts about TIL. It looks like if I do that treatment it excludes me from the Nivo/AntiLag3 trial. That trial seems to have the purpose of helping folks that have progressed while on pd1. I'm not sure how successful they are having but I'm traveling to Chicago to see the doc next Tuesday about it. It's the typical no slot available now but will be opening thing. I'm also not sure if I'm strong enough to make it through the TIL treatment if I go that route. I've been hearing a lot about TIL and you have to be physically strong which I'm not sure if I am. If I'm not strong enough I could end up depleted or worse. So I dunno. Just rambling to folks I know get it because you've been through so much too.

Artie

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Replies by: Emcjones1, Bubbles, Anonymous, Janner

Hello patrons,

I am 66 yrs old, male, ethnically East Indian, have been diagnosed with Metastatic Malignant Melanoma. I was also test B-RAF positive with mutation in codon 600 exon 15 of BRAF gene and was prescribed Zelboraf (Vemurafenib) by the doctor, dosage advised 960mg twice a day.  Secondly, the tumor growth behind the head in the scalp region was surgically removed by a Onco Surgeon.

I also checked out the Clinical Trials India Registry and an ongoing Trial of Zelboraf (Vemurafenib) by Roche was active but not recruting any patients. Alternatively I checked Clinical Trials in USA and found many ongoing trials under sponsorship of Roche. I also contacted Dr. James Goydos, Director, Melanoma and Soft Tissue Oncology Program Surgical Oncologist and had he had suggested that Zelboraf (Vemurafenib) might not work since the tumor was surgically removed and hence the Inhibitor has no work to do !, I am very confused and lost at this stage with following questions :

1) Since this is an extreme rare occurence in India, which nearby countries have [color=#FF0000]Melanoma Specialist[/color] than mere Oncologist / Dermatologist - Singapore, Indonesia, Thailand, Hong Kong, China, UK, Germany, South Africa? since USA is too far from India

2) Will the clinical trials recruit indian / international patients as a part of the program for patients who have no insurance ?

3) If any international patients in the forum here have gone through having an online appointment with webcam setup with any doctor in USA?

Your replies will be a life saver for me !, God Bless !!

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jualonso's picture
Replies 1
Last reply 11/13/2014 - 8:39am
Replies by: mary1233

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