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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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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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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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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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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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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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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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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Leslie&#039;sHusband's picture
Replies 3
Last reply 7/13/2014 - 8:03pm
Replies by: Leslie'sHusband, GAngel

I've been kinda quiet here for a while.  Les and I have just been living life, and trying to keep a positive outlook on things.

After 8 weeks and 3 days, we were finally able to get back to Duke to have the drain removed from her thigh this past Friday.  It seemed like it took forever for the drainage levels to drop off enough that it could be removed.  Part of the laproscopic lymph node removal trial involves measuring her legs for swelling, so she's sporting a fresh set of reference marks for the measurements.  Just to keep the mood light after the nurse (Kara is an awesome nurse!) removed the 12+ inches of tubing from her leg, Les said "Look!  I have a blow-hole!"  Kara said, "Yeah, but I don't think you'll be breathing out of it."  Never missed a beat.

Anyway, we head back down next month for a PET scan, so we'll probably be dealing with a little 'scanxiety' soon.  The upside is that she will have the scan and we will get/discuss the results same day.

Dave

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JakeinNY's picture
Replies 13
Last reply 7/14/2014 - 9:02am

This study was published last year. Although none of the patients were melanoma patients, it doesn't seem to be a stretch that it may help mm patients.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3157418/?tool=pubmed

I personally am already on a carb and sugar restricted diet and although this is such a small study, it is promising and is something worthwhile mentioning.

Do the best you can.

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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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RJoeyB's picture
Replies 11
Last reply 7/14/2014 - 4:03pm
Posting this as a conversation-starter and also trying to educate myself so if the time comes, I'm not scrambling to ask these questions.  My profile has my background, but long story short, I was diagnosed four years ago (yesterday, in fact) and found to be Stage IV within two weeks of diagnosis.  Very early on, prior to moving forward with a TIL trial at NCI/NIH in Bethesda, I considered a PLX4032 trial at the University of Pennsylvania (PLX4032 became vemurafenib/Zelboraf and as most of us around here know, was approved in the summer of 2011 by the FDA), but was told even by the top person at Penn that if I was eligible for the TIL trial, that was my best option at the time.  (To confirm, I am BRAF-positive).  We've been through a lot since then, with partial responses to some combination of the TIL, IL-2, and ipilimumab, along with many surgeries and courses of radiation.  
 
All throughout, I've continually educated myself about what else is out there, so consider myself pretty informed about immunotherapy, checkpoint inhibitors, targeted therapies, and the roles of more "traditional" surgical and radiation options.  However, as the targeted therapies have evolved quickly, with both Roche's vemurafenib/Zelboraf and GSK's dabrafenib/Tafinlar approved as BRAF inhibitor monotherapies, GSK's trametinib/Mekinist approved as an MEK inhibitor monotherapy, and of course dabrafenib and trametinib approved as a combination therapy, I've found that the guidelines for how these options are being selected are vague, which leads to a number of questions:
 
1) Vemurafenib vs. dabrafenib?  Has one shown superiority to the other?  Are doctors prescribing them equally and/or what criteria are they using to select one or the other?
 
2) Monotherapy vs. combination therapy?  Given the approval of the combination therapy, are there still reasons to start with a single agent (either of the BRAF-inhibtors or the MEK-inhibitor)?  If so, what are they?  Perhaps the approval of the GSK combination is driving additional market share to dabrafenib?  (I know Roche and Exelixis have their own MEK inhibitor, cobimetinib, in trials)
 
Again, for now, we have kept the BRAF/MEK targeted therapies in our proverbial back pocket and will cross the bridge if and when we reach it, but it seems that the playing field has become very muddy as to the best use of these options.  It's probable that there still aren't any real answers, yet; that those of us here are the ones ultimately providing answers through participation in trials and use of these new therapies, but if anyone has any insight from their own experiences, I think we could all benefit from hearing.
 
Thanks,
Joe
 

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BrianP's picture
Replies 6
Last reply 7/15/2014 - 12:44am
Replies by: RJoeyB, BrianP, CHD, Maureen038, Anonymous

Just found out my uncle was diagnosed with muscal melanoma.  I'm not as familiar with muscal melanoma as I am with your everyday run of the mill melanoma.  Few questions I have if anyone can comment on:

Is there anywhere and anyone in particular that specializes in or is know as "the place" for muscal melanoma?  I've heard Dr. Hodi and Farber is pretty experienced with muscal melanoma.  He's currently located in Virginia so probably limited to the east coast.

Current thinking doesn't put a high value on chemo and radiation (other than in combination with immunotherapy) for most melanoma but is that not so with muscal melanoma? 

I heard that muscal melanoma isn't as responsive to Ipi as other melanoma (something like only 7%).  Does anyone know if this is true.  Has it been anymore responsive to anti-PD1?

 

Thanks for any advice or information anyone can provide.

Brian

 

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arthurjedi007's picture
Replies 1
Last reply 7/15/2014 - 12:51am
Replies by: lbkimball

I just learned this from my doc at Mayo.  Apparently all of us with this disease are at high risk for blood clots. To help during the 8+ hour drive he said to stop every 2 hours or so and walk for a minute. Apparently that's all it takes. He also said like on an airplane or even in the car to keep moving your feet.

I don't have blood clots but figured I should share this info to help us keep from having them.

 

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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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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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