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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Anonymous's picture
Anonymous
Replies 0

How likely is it that melanoma would go to my groin lymph nodes?  My mole was on my mid back- the slnb was under my left arm.  The lymph node came back negative.   (So right now I am stage 1b).  I'm panicked that it will go to my groin lymph nodes.  Is that common? 

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Hoping someone could possibly shed light on this phenomenon. My dad has had 3 doses of Yervoy thus far and and the subcutaneous tumor on his back (growing right on the WLE scar), started regressing quite noticeably right after the second dose (turned purple and shrank considerably). 2 weeks ago he began suffering from watery diarrhea and was put on a course of steroids for 1 week. During the course of steroids, the tumor started growing and reddening again. Could this be an "ipi flare" or could the steroids possibly have counteracted the effects of the Yervoy?

He has a doc appt tomorrow for his 4th and final dose of Yervoy now that he is off of the steroids, but we are freaking out about the re-growth after such a promising start to this treatment.

Any input is greatly appreciated. Thank you in advance!

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1derdog's picture
Replies 4
Last reply 7/18/2014 - 2:58am

My husbands has stage 4 melanoma in his lungs.  He has been on a clinical trial for 21 months now.  The tumor is increasing in size and now the doctor tells us he needs to get on a blood thinner (fragmin) because his arteries are clogging.  He said this is common in cancer patients.  Can anyone tell me if this is so wing they have either heard of or have experienced themselves.  I'm very concerned.  Can this be treated?

any suggestions would be very appreciated. 

 

Thank you 

1derdog

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BMS announced today that they'll be making their official application to the FDA for approval of their PD-1 checkpoint inhibitor nivolumab this fall.  Of lesser importance, they're going with the brand name Opdivo.  MarketWatch article here:

Bristol-Myers Squibb Announces Plans for Third Quarter Submission of a Biologics License Application for Opdivo®(nivolumab), an Investigational PD-1 Immune Checkpoint Inhibitor, for Previously Treated Advanced Melanoma

http://www.marketwatch.com/story/bristol-myers-squibb-announces-plans-fo...

Interesting because many expected that BMS would wait until early 2015 to submit.  They'll be seeking approval similar to the way Merck's approval will likely come through and the EAP's are being constructed, namely that it will require prior failure with ipilimumab (Yervoy), and for BRAF-positive patients, prior BRAF-targeted therapy.  First-line approval would then come later once the final Phase III trials are completed.

Joe

 

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Tim--MRF's picture
Replies 6
Last reply 7/13/2014 - 10:20am
Replies by: Ed Williams, Anonymous, JoshF, RJoeyB, BrianP

I have a few more details about the Expanded Access Protocol for the combination of ipi and nivo.

The study has been approved by the FDA, which means it is posted on clinicaltrials.gov. This starts the process of getting sites open. The company is looking first to sites that have experience with the combination as part of the clinical trial process. It will take at least a month, and more likely six to eight weeks to start putting people on the drug, but everyone is working fast to shorten that time.

The study is open to people with Stage IV or unresectable Stage III melanoma, and it includes mucosal melanoma. It does not include ocular (uveal) melanoma because not enough patients with OM have been treated with the combination to know that it works in that population.

BRAF status doesn't matter, and prior treatment with a BRAF inhibitor is allowed. Prior treatment with ipi is not allowed.

Brain metastases must be stable for two weeks.  This is actually great news, as the previous standard has been eight weeks. 

Because ipi is an approved drug it must be provided as a prescription medicine and covered by insurance or some other program.  Nivo will be provided free as part of the protocol.

So what does this mean? That is not entirely clear. Clinical trial data is based on a small group of patients, fewer than 100.  Toxicities were high, with 2/3 of patients having Grade 3 or 4 toxicities.  Toxicities, or side effects, are rated on a scale of 1 to 5, with 5 being death.  Doctors involved in the study say that many of these higher grade toxicities were due to liver enzymes being out of normal range. The patients felt OK and the liver issues were dealt with fairly easily. 

The results of this small study were very impressive. These patients were all in real trouble. They had experience as many as three prior systemic therapies and were now progressing again. Despite this, the dosage being used in the EAP had one and two year survival rates of 94 and 88 percent, respectively. Those numbers are very high.

Everyone in the field is watching this combination very carefully, with hopes that they strong results will hold up as the number of patients increase and as it is used in patients as their first therapy.

Tim--MRF

 

 

 

 

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MixtaJones's picture
Replies 6
Last reply 7/14/2014 - 3:02pm
Replies by: awanning, LuckyMan51, Colleen66, Anonymous, RJoeyB

So I have my 4th infussion of Yervoy tomorrow and am excited but nervous at the same time. I am wondering what is going to happen next? I know I have to wait about a month to get another PET/CT to check how things are going. I have not had one since before surgery so I don't even really know what tumors were left from what the surgeon could not get.

What experience does everyone have after they finished ipi? I would like to believe that after 4 rounds of treatment the cancer is gone and I can start calling myself NED but that sounds pretty unrealistic. Do they do boasts of ipi or more rounds if it is not gone or even if it is gone? If it has spread do they concider the ipi a failure? What constitutes failing a treatment?

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

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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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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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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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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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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
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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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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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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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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