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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Ginger8888's picture
Replies 3
Last reply 7/19/2014 - 8:50am

Hi everyone, i have a question..I did the 30 day HD interferon back in April with no problems except a little fatigue in the mornings..It didn't work so i am on Yervoy now and did my 2nd does a couple weeks ago and have shoulder and arm pain..My left forearm was hurting pretty back before my surgery back in feb but has eased some since..My left shoulder and muscle in my upper arm hurts like crazy and has been since may, was wondering if anyone else has had this experience?..I had a left neck dissection in Feb 2014 am seems things on my left side are screwed up..My right arm is starting to hurt some also but i believe that's because i'm using it more because of the other side..No other side effects with the Yervoy yet..

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sisterkk's picture
Replies 5
Last reply 7/16/2014 - 12:35am
Replies by: Anonymous, Ginger8888, sisterkk

A strange new mole appeared on my right breast.  My husband thinks it is a blood blister, but I'm not so sure.  It's about the size of a pencil eraser and appeared quickly.  What do you think (Picture attached)? 

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Anonymous's picture
Anonymous
Replies 0

Hi! This is the first time I have posted here but my nerves are getting to the best of me and I wanted to check in with the group to see if they had any expertise on this subject...

Quick background I was diagnosed with Stage 1 melanoma on the back 4 years ago and have had check ups every 6months since then. 

I have a clear mole on the top of my forehead that gets lots of sun and have had concerns about it for a while but the dr's always brushed it off. I too didn't think much of it, but most recently the mole has become painful to touch or when i brush over it..not sever pain but definitely tender. I made an appointment next week and really want them to remove it. 

Just wondering if anyone else has had a clear mole that was tender that ended up being melanoma or better yet benign...trying to figure out how concerned I should be. 

Thanks :)

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ltalley's picture
Replies 4
Last reply 7/16/2014 - 12:34pm
Replies by: Anonymous, Janner

I would clearly like to know more about the Radial Growth Phase versus the Vertical Growth Phase, and if it is so imporatant why doesn't every pathologists report it in a patients path report? All information on this would be greatly appreciated..

Living Life!smiley

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vivian's picture
Replies 3
Last reply 7/16/2014 - 6:56am
Replies by: RJoeyB, vivian

Well, after being NED for a year and a half, it appears that I have a new lung nodule in the same lobe (left lower) from which I had one removed in 11/12.  That one was a wedge resection done by VATS.  Currently this nodule is small, only 4.5mm, so I imagine the docs will say wait and see if it grows.  However, the chances seem really good that this is another melanoma met.  I don't see either of my oncologists until next week, so I am just wondering if anyone out there has had more than one resection in the same lobe.  I really like to have as much information as possible before I hear what they have to say - especially as I usually turn into some kind of blithering idiot in the oncology office!  Thanks for any help/experiences you can share. 

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jualonso's picture
Replies 5
Last reply 7/18/2014 - 8:05pm

As i said in the post, i would like to know tbe people who decide to stop the combo before the resistance appear and go through inmunotheraphy to check in the case thag it did not work came back to combo and it continued working.

Thanks for your answers

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cmosley's picture
Replies 3
Last reply 7/15/2014 - 11:07am
Replies by: Gene_S, Socks, MixtaJones

Hi Everyone, 

So glad I stumbled across this resource. 

A few weeks ago I discovered a mole on my head was bleeding on my scalp. After having it removed I found out that it is melanoma. The plastic surgeon said that it was .8mm, no ulceration, and had a mitotic rate of 2/mm2. He's asked me to come back so he can remove a little bit more as a precaution. I'll also be connecting with a general surgeon to discuss further diagnostics; I assume this will involve removing a lymph node.

Does anyone have any recommendations on what to do next? Based on your experiences, what questions should I be asking?

I'm feeling lost here so any insight would be helpful. 

Thanks, 

 

Christian

 

ps - sorry everything is bold - can't seem to turn it off. 

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lbkimball's picture
Replies 5
Last reply 7/15/2014 - 6:23am

 

Hi there,

 

This is my first post, although I've had stage IV melanoma for over a year. I have 30+ brain mets (mostly tiny lesions, but a couple of good sized tumors) and am starting PD-1 on Thursday. I was on Tafinlar and Mekinist for about 8 months, then that stopped working. I had gamma knife treatment in February, and my doctor put me back on a double dose of Tafinlar. Since then (Feb) my brain tumors have been shrinking but the other tumors in my body continue to grow and more are appearing. I tried one infusion of Yervoy but got very sick, so we decided I was a "failure", which allowed me to access PD-1.

My question is, has anyone here had PD-1 treatment with brain mets? If so, what kind of results did you see? I will be stopping Tafinlar, and assume I'll receive more gamma knife treatments if my brain mets start to progress again. 

Finally, I'm being treated at UCSF by Dr. Daud. 

Thanks for any wisdom you might have for me!

laura

sjkimballs.blogspot.com (my cancer blog)

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awanning's picture
Replies 10
Last reply 7/15/2014 - 9:33pm
Replies by: kylez, Anonymous, facebookpva, hbecker, awanning, arthurjedi007

Oof. Stage IV. diagnosed a week ago. in my bones, liver, breasts, lymph node(s), neck. 31 years old. I was told I need to start on a BRAF and MEK inhibitor ASAP to "get it under control" before looking at any other treatment options. I'm not seeing those treatments on this forum much and it's making me a bit nervous.  

I can't quite figure out how to find a really good melanoma specialist. There is only one option in my entire state (Colorado), and he has received pretty low ratings from patients for a variety of reasons. Therefore, it is looking like I will need to relocate to find kickass treatment places. But how do you find them? Google tells me MD Anderson, Dana-Farber, NIH. More?

Does anyone have experience at any of these places? I don't have insurance that will travel with me, so I'll need to figure out a financial solution, as well, but my primary focus is the bestest treatment options in the entire world. I'll pay it off for the rest of my life if I have to. Any experiences from folks that have been to any of those cancer centers or have strong recommendations for any others I haven't heard of, would be oh so mightily appreciated. I feel like I am fumbling around in the dark with Google as my only flickering flashlight. I'm so glad I found this forum. 

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melfighter's picture
Replies 7
Last reply 7/16/2014 - 1:41am

My husband started Xvega last Monday, he seemed fine the 1st 2 days, but around Wednesday, he started feeling very tired and weak. The last 2 days he has not been able to get out of bed, just very tired and very weak. Prior to Xgeva, he was actually feeling much better and with the radiation to his back & sacrum,  he felt the pain was much more manageable.

I read that tiredness and weakness are side effects of Xvega, has anyone experienced the same thing? Is this temporary? 

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mindy h's picture
Replies 5
Last reply 7/15/2014 - 1:32pm
Replies by: RJoeyB, mindy h

my daughter is 22 yrs old stage 4 melanoma. she just went through a trial at nih which compares standard dose chemo for lymphodepletion with low dose. she got the low dose. I was wondering if any out there also got the low dose and how they were doing. we are three weeks out and have not seen any improvement.  thank you.          she already has had IL2 and anti pd1

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meganc13's picture
Replies 5
Last reply 7/16/2014 - 2:17pm
Replies by: Lucky Wrenn, Thandster, gaby, Anonymous

I've been seeing a lot lately that people have had issues with infertility after doing interferon.  This terrifies me!  I've been doing interferon for 9 months now, I'm 30 years old and my husband and I have every hope to have children some day.  Have any of you struggled with infertility as a direct result of the interferon?

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My husband was removed from the Yervoy vs. Interferon clinical trial in March. He received the induction phase if 10 mg Yervoy  with manageable side effects. Unfortunately, a small liver mets was discovered at the post induction CAT scan.  We were devasatated. He did have the lesion removed through ablation ( microwave) and is now NED.  My husband is doing well.

We are not convinced that the Yervoy did not work, but are disappointed that he could not finish the maintenance doses. I think I remember reading in this forum that the maintenance doses did not seem to make a difference. I was wondering if anyone remembered reading that?

A July article in the Journal of American College of Physicians concluded that melanoma patients who were able to have resection or ablation of liver mets do well so we are very happy for that.

This forum is wonderful; for support, knowledge, and not feeling so alone. Thank you all.

 

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carols63b's picture
Replies 6
Last reply 7/13/2014 - 5:34pm

Started zelboraf in september for mets in stomach.  Complete response in february 2014.  Stopped Zel in may because of stomach trouble May 20 2014.  Memorial day weekend I had left sid eweakness, went to hospital mri showed many tumors which were in opperable, so I had 10 days of whole brain radiation.  My local oncologist says that yervoy could help.  I have also called md anderson and have started gathering my records.  Any advice?

Thanks

Carolyn in Fredericksburg VA

Stay positive

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Anonymous's picture
Replies 1
Last reply 7/12/2014 - 4:36pm
Replies by: Janner

Last month had a shave biopsy done of a very small mole (about 1 mm) on my arm during a routine visit to the dermatologist.  The Dr. originally did not spot it but asked me if I had any moles change color/shape recently.  I told him I thought the one on my arm did (but I wasn't sure).  He did a shave biopsy on it, and a couple of days later I got a call from a nurse saying it was severely atypical and I needed to come back in 2 weeks for a wide local excision to take the whole lesion out.  The path report concluded a differential diagnosis for an early melanoma in situ.

So I was worried sick for 2 weeks and had the wide local excision done, taking a good inch of skin out.  But the 2nd path report said they could not find any neoplasm, melanocytic or otherwise, on the skin.

I am feeling like I was taken for.  Not only do I have a very visible (and probably permanent scar), but they hit me for a bill for almost $500 after collecting over $1200 from my insurance company.  They never explained any of the costs to me, only charging me for regular office visits each time, which made me assume it was covered until they hit me with the bill (to be paid immediately).

I am considering whether I should get my tissue samples from them and get a second opinion.  Would this be advisable or would I just be throwing more money away?  Thanks for your advice.

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