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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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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Gigipup's picture
Replies 2
Last reply 7/12/2014 - 11:05am
Replies by: Gigipup, Kim K

Hello-

Earlier this month, I had what I thought was a small (2 mm) freckle removed from my leg. It was a dark brown and appeared to be getting larger.

Today I heard back from the dermatologist's office. They want to re-excise the area. I have a copy of the dermpath report and I am worried about what it says:

"There are features of evolving melanoma in situ. The lesion extends to the peripheral margins and to the base of the sections."

Under the heading "Microscopic description," it says, "Severely atypical melanocytes disposed as solitary units and nests are present within the epidermis and dermis."

I'm getting the re-excision done on Tuesday. What do I need to ask the doctor? Should I see an oncologist? Get a second opinion after the re-excision?

What are the chances this is melanoma? I'm so scared and worried.

Thank you all for your help. This board has been a great place of information so far.
Take care

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Anonymous's picture
Anonymous
Replies 3
Last reply 7/13/2014 - 12:42am

Has anyone been diagnosed with having melanoma under their toenail?

Hope

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ScaredV's picture
Replies 7
Last reply 7/18/2014 - 2:53am

Hello everyone,

I posted about a week  ago explaining my current situation involving my fiance's melanoma diagnosis.  Basically he was diagnosed with a very thin (but large) melanoma on his left jawline back in April.  After the WLE, we found out the melanoma was thicker than they thought at the deepest point (1.2mm).  So now we are waiting to be seen by an oncologist to decide if we will proceed with a lymph node biopsy as his first surgeon did not think it was necessary, but his dermatologist would like to get one done.  We should be seeing the new ongologist/surgeon in the next two weeks.

The other day, I noticed a very small lump on my fiance's collar bone.  The lump was on the right side right where that 'U' shaped dip is underneath his neck. It is very small, smallar than a pea but I did notice it. When I felt it, it felt hard.  I don't ever remember seeing it there before but my fiance said that it's just his bone... I don't agree with him, I can feel and see this is a small lump.  He has also had a cough for the last three weeks that is left over from a cold he had before.. maybe it's something from that? 

My question is, should I be worried about this?  Ever since I saw it, my anxiety has gone through the roof but I don't know if it's just me being paranoid or is this is something that should be taken seriously? I feel like it doesn't make sense, as his melanoma was on the left side of his face and this lump is on the right side of his collarbone.  Does anyone have any advice for me?  Thank you.

Also, can anyone give me advice on how to calm my anxiety through all this? I am having a very hard time with it and I have never suffered from anxiety before all this.  

Thank you so much.

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Sherron's picture
Replies 6
Last reply 7/12/2014 - 3:43pm
Replies by: Anonymous, Kim K, BrianP, rick1981, Fen

8 years ago today my husband, Jim, was diagnosed with Nodular Melanoma.  Jim's Melanoma was on his scalp...and he made the decision to not do the WLE, SNB, or any other normal treatment.  He went the alternative way.  He was all about QUALITY OF LIFE, instead of the time remaining.  His was already vascular invasive when we found it.  For 4 years 2 months he led his life the way he wanted to. He was only sick for 3 months. He never questioned or regretted any of his decisions.  He was my hero, the love of my life, my very best friend, the wind beneath my wings,  Jim won his battle with Melanoma on Nov 30, 2010.

It has now been 3 years 7 1/2 months ....since the Angels took Jim home.  I think of you all often.  I come here everyday.  It is a part of my life.  Once a year I do a Melanoma Walk in Dallas, Texas on the first Saturday in May.

I am still working full-time at age 68, and will continue for a few more years.  I  have had to move my mama here and put into an Assisted Living...So I work, then go see her each evening.  Life has been hard, but I am stronger than I thought I could ever be.  I still am getting some counseling sessions.  It was so hard to lose the love of my life.  He passed 4 days before our 43rd anniversary. We were from that generation where the man took care of his wife. Well, I have learned to take care of myself.

I am here often to check on people...I don't comment a lot, but I read your stories.  I wish you all the very best, and however you fight this beast, give it your all, make your decisions, don't regret, and don't look back.  It looks like new and better options and trials are out there, and that is wonderful.

 

Take Care,

Sherron, wife to Jim (FOREVER & ALWAYS)

His profile is under my name - Sherron

 

 

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jbronicki's picture
Replies 4
Last reply 7/13/2014 - 1:29am
Replies by: kylez, Linny, jbronicki

Hi,  My husband has a follow-up Ultrasound with Fine Needle Biopsy today along with CT scans.  Does anyone have any experience with this in their own treatment?  My husband had a WLE and SLNB in February on a 19 mm melanoma on his upper trunk.  There was no epidermal component so they couldn't truly stage him but the SLNB was negative and his scans were negative at this time and margins were clear.  I understand that they are looking for evidence of metastatic disease with this procedure but not sure if we get the results back immediately or if we have to wait, etc?

Thank you! 

Jackie (wife of John)

Jackie <3

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