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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Hi All,

The MRF is working on an expanded educational initiative that would require the expertise of a nurse or nurse practitioner who specializes in melanoma. He or she would need to be able to speak comfortably in front of an audience and be knowledgeable on topics like: managing treatment side effects, lymphedema, psychosocial issues of a diagnosis, etc.

I am looking for recommendations from you. Has anyone had a really wonderful experience with a nurse or nurse practitioner? If so, please let me know by emailing me directly at smoneer@melanoma.org. Thank you in advance for your thoughts!

Sincerely,

Shelby - MRF 

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Anonymous's picture
Anonymous
Replies 4
Last reply 7/31/2013 - 12:42pm
Replies by: Nonna Sharpe, LynnLuc, Anonymous, melissa ann

I read somewhere that a few patients in the BMS PD1 trial got chicken pox/shingles. Has anyone heard about this???

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Zippydodah51's picture
Replies 1
Last reply 7/31/2013 - 11:14am
Replies by: hbecker

Hi, I am writing for my sister Roberta. She has stage 1V Melanoma. Her tumor is to large to do surgery. They just started her on this drug. She is having bad side effects & had to stop it for now. Severe joint pain & burning feet. Anyone else been on this trial drug?

I am trying to learn all I can to help my sister.

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Everymoment's picture
Replies 10
Last reply 7/31/2013 - 10:46am

Hi,

So I met with my local oncologist and she scheduled the PET scan for this Wednesday. She wasn't too concerned that I just became anemic within the last 30 days which I see as a huge red flag just in general. The fact that I've never been anemic and now all of a sudden I'm anemic with all these other issues. Anyway, only 1 more day of waiting to get scanned and then a couple more days of waiting for results. Send some happy thoughts please!

Isabell

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Anonymous's picture
Anonymous
Replies 17
Last reply 7/31/2013 - 5:56am

I just wanted to say that I apologise for any offence I may have caused regarding my reaction to POW's post and my subsequent advice to him/ her. This was not my intention.

I can fully understand that as a former caregiver the information given by POW is well appreciated but I personally feel upset that Gina and Vicki found me to be  "rude" and insulting.  I realise that my posts were rather curt so let me try and explain myself more...

As a melanoma sufferer, I do not feel myself to be part of a "club" on this forum and, rightly or wrongly, I feel uncomfortable with this term as to me it is more reminiscent of Facebook with its more social approach.  That's just my opinion and I recognise that others like the sense of feeling they have joined a club.  Each to their own but I'm an individual with melanoma  facing my own individual experience.

My advice to POW was meant to be well meaning from his/ her side of the equation, not from the side of those who value her replies.  I can understand that POW has gained a lot of knowledge during the role of caregiver  and kindly takes the time to impart this via the forum.  I can see that continuing to contribute to the forum following POW's sad loss may well help POW come to terms with this.  Perhaps, though, it is also good to step back from the world of melanoma when you don't have to be part of that world.  The melanoma sufferers and current caregivers have no choice but to be part of this surreal existence.  I feel particular concern for POW when he/ she continues to post so regularly and use the word "us" as really only those currently living with melanoma and their caregivers are part of the "us" group.

So Gina and Vicki, you probably still don't understand but I've tried to explain.  In particular Gina, please don't pray for me as in common with many other people I don't believe in God.

Also, I see no problem if I choose to post anonymously as most do the same in effect as their forum "names" give no clue to their real identity so are choosing privacy.

 

 

 

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Linny's picture
Replies 1
Last reply 7/31/2013 - 12:25am

Tafinlar, Mekinist approved for metastatic melanoma treatment in Canada

Dabrafenib and trametinib have been approved by Health Canada for treating patients with unresectable or metastatic melanoma, manufacturer GlaxoSmithKline announced today.

Dabrafenib (Tafinlar), a BRAF inhibitor, and trametinib (Mekinist), a MEK inhibitor, are each indicated as monotherapy oral treatment for patients with BRAF V600 mutation, according to a press release. A validated test to identify BRAF V600 mutation status is required.

Available dosage will be 50 mg and 75 mg capsules for dabrafenib and 0.5 mg and 2.0 mg tablets for Mekinist, according to GlaxoSmithKline (GSK).

“Health Canada’s approval of Tafinlar and Mekinist represent an important step in GSK’s ongoing effort to bring new treatment options to cancer patients as quickly and efficiently as possible,” Rav Kumar, PhD, vice president of R&D Operations/Business Development, GSK Canada, said in the release.

Earlier this month, GSK announced it had submitted supplemental New Drug Applications to the FDA for dabrafenib in combination with trametinib as therapy for metastatic or unresectable melanoma. The FDA announced in May that it had approved dabrafenib to treat patients whose tumors express BRAF V600E gene mutation and trametinib for patients whose tumors express BRAF V600E or V600K gene mutations. The drugs were not approved as combination therapy.

 

http://www.healio.com/dermatology/cutaneous-oncology/news/online/%7BADD7F996-016D-41AE-9A83-99D52920A274%7D/Tafinlar-Mekinist-approved-for-metastatic-melanoma-treatment-in-Canada

Stage III, Unknown Primary; 1 positive node in left axilla

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DeniseK's picture
Replies 4
Last reply 7/30/2013 - 6:22pm
Replies by: DeniseK, POW, ecc26

Hello Everyone,

I'm hoping someone can help me.  I just had my second infusion of Ipi on Thursday July 25th.  Saturday I woke up with the worst pain in my arm just around the sub q on my forearm.  It feels like someone is stabbing me in my arm.  My chest also feels heavy and more back and chest pain than normal.  The sub q on my arm appears to be getting larger as well.  I looked and looked and I could have sworn that this might be normal and a sign that it's working??  I don't know what to do?  Should I call my doctor? I don't think I have much room for growth with my mets and it's scaring the (bleep) out of me.

Thanks for your help

Denise

Cancer Cannot cripple love, silence courage, destroy friendship, shatter hope or conquer the spirit.

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mclaus23's picture
Replies 2
Last reply 7/30/2013 - 3:41pm
Replies by: mclaus23, NYKaren

My dad just started Z yesterday morning and had had vomiting and diarrhea. Has anyone experienced this so soon with Z or at all?

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buffcody's picture
Replies 9
Last reply 7/30/2013 - 3:12pm

I was catching up on my MPIP Bulletin Board reading this morning and read a couple of posts suggesting that posting encouraging news is as important for people reading out here as more difficult experiences.  I was diagnosed at Stage IV a year ago June.  Operations to remove mets on lung and left buttock, SRS for two brain tumors, one course of  Yervoy.  I've been NED since the buttock operation on May 1.  I had two grand mal seizures on May 11, originally diagnosed as the result of a new brain tumor, later corrected to be a side effect of  hematoma from one of the previously radiated brain tumors. In the hospital afterwards for three days.  

 

Yesterday, after another brain MRI last week, my oncologist recommended brain surgery to remove the growing but dead leision manfiesting the hematoma.  Though still on anti-swelling and anti seizure medications, the latter for the long term, I'm feeling fine and intend to compete next week in swimming at the National Senior Games in Cleveland, a biannual event, in the 70-74 age group.  I've been able to  keep up my training through this  entire year, though admittedly at a reduced level and some weeks and months at zero. 

Brain surgery will take place sometime after next week, of course, not sure yet when but soon.  My oncologist at the Univerwsity of Michigan believes that the Yervoy helped me, but, since the only objective measure I have is that there were no new mets except one in my buttock that showed up after the four infusions, I don't fit any of the objective criteria for success (reduction in tumor load or reduction in growth). But whatever the cause of my relatively easy journey, I am most grateful that I'm able to be fully functional, albeit with legal restriction from driving till 6 months after the seizure, and knowing that there are an abundance of new treatments being developed if I need them in the future.

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cparra's picture
Replies 8
Last reply 7/30/2013 - 12:27am
Replies by: Janner, cparra, Anonymous

I found a weird mole 2 wks ago. I had the doc biopsy it and here are the results. I spoke with the nurse and she sd it wasnt cancer but a changing mole and if I hadnt removed it it wouldve turned to melanoma. i had then fax me the report and it didnt say anything about severe or moderate dysplasia. It was confusing. I go see the doc in a week for another full body ck and I will ask but was hoping that some ppl more knowledgeable than I could shed some light to this. BTW i am 34 with freckles and reddish brown hair and I grew up in Florida out in the sun!

 

Here is what the lab results said:

Diagnosis: Compound Nevus with features of dysplastic (clarks) nevus

Note: This lesion has features of a so-called dysplastic (Clark's) nevus. The significance of this can only be assessed in the clinical and historical context of the patient.

CLINICAL DATA:

R/O DN

GROSS DESCRIPTION: The specimin recieved labeled with patient name was tan and measured 4.0 x3.0 x 2.0mm

MICROSCOPIC DESCRIPTION: There is a proliferation of melanocytes arranged mostly in the nests at the dermoepidermal junction which focally tend to coalesce. Nests and solitary melanocytes extend past the intradermal component in the epidermis. The epidermis is hyperplastic and focally, there is fibroplasia surrounding the rete ridges. Nevus cells are present in the dermis centrally.

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So that is it. it seems a little scary tho. what is scary is the nevus cells in the dermis centrally and so other things. maybe I shouldnt be concerned about that. i dont know. ive never had anything biopsied.

help!

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DonnaK's picture
Replies 5
Last reply 7/29/2013 - 11:23pm

HI All-  My husband, John, has Stage IV melanoma with mets in his lungs, lymph nodes and brain.  He was on Zelboraf for 7wks but had to stop due to significant liver toxicity.  While waiting for his liver to recover (~2wks), his brain mets re-grew (they had shrunk considerably after just 3wks) to as big or bigger than the original size.  As a result, we chose to start WBR immediately and are hoping to add in Ipi at the end of this week.  (Sadly, SRS is not an option right now as the number of mets are "too many to count", although they are reasonably small.) Has anyone else been through this combination?  If so, at what point did you add Ipi and how did you control the swelling?  John is on 5mg of prednisone as he has minimal swelling, but woke up this morning with a terrible headache.  The radiologist wants him to increase his steroids to control swelling but the oncologist wants him to taper off the steroids to maximize the ipi effect.  For today, he settled for oxycodone which seemed to control the pain, but I suspect the swelling will only continue, particularly if the treatment works.  I'm trying to avoid increasing the steroid level because we will have to delay the Ipi another week, but I also can't stand seeing him in such pain. Any advice??

Also, if anyone has some positive stories with WBR and/or ipi on brain mets, I could really use a happy story to alleviate this nightmare we are living.  

Thanks!!

Donna

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BrianP's picture
Replies 8
Last reply 7/29/2013 - 11:14pm
Replies by: Anonymous, BrianP, POW

Anyone ever heard of or tried this product.  I just saw a physician that highly recommended it.  The Product info is here:

http://www.theharmonycompany.com/product/AveULTRA-Avemar-Fermented-Wheat-Germ-Extract 

 

More interesting, the supporting data/clinical study info is posted here.  The first paragraph talks about study results in patients with melanoma.  The results are overwhelmingly positive.

http://www.avemarresearch.com/TOC.html 

 

You know what they say about stuff on the internet, it has to be true, right? (that's sarcasm by the way).  It does sound legit though and they claim the inventor is a nobel science awardee.  The stuff is about $150 a month so it's not cheap.  It just seems like the claims are too good to be true without having more widespread knowledge of the product.  I did a search on here and it was only mentioned twice and neither of those mentions was by anyone that had tried the product or were endorsing it.  Just curious if anyone has any comments.

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dhrahn's picture
Replies 2
Last reply 7/29/2013 - 4:53pm
Replies by: joy_, WendyPam

Hi everybody - My husband was diagnosed 1 year ago with Stage IV melanoma.  He has been on zelboraf for a year and we had some awesome results but both adrenals are tumors and have started growing again as of last week ct scan.  Devastated, yes.  This last year was almost surreal because my husband was feeling overall really good.  Our oncologist has now presented 2 options...  yervoy or clinical trial.  What do we do?????  We are heading up to Angeles clinic in Santa Monica this Monday and then plan to fly out to Moffitt but I questioning if we should stick with yervoy..... As all of you know this is all so overwhelming.  Any advice would be greatly appreciated. -Holly and Dave

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ad2424's picture
Replies 7
Last reply 7/29/2013 - 12:18pm
Replies by: DEK, Anonymous, JerryfromFauq, vivian, ad2424, Linny, Randy437

After learning of Stage 4 via VAT lung surgery in the summer of 2011 (initial diagnosis 15 years earlier), and having numerous lung nodules all under 1 cm, I did IL-2 in December of 2011 and March 2012.

All nodules have been stable since January 2012.  

I have have scans quarterly since. Sometimes just chest, other times chest, abdomin and pelvis, less frequently brain.

For those in a similar situation, what is the frequency of your scans. I seem to have no particular protocol.

Thanks.

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fgilbert63's picture
Replies 6
Last reply 7/29/2013 - 3:51am
Replies by: JerryfromFauq, jodywood, Anonymous, Lkinnaman

Has anyonone seen this?  Sounds to good to be true, however a simple drug like Lovaststin is still in clinical trials for dysplastic nevi.

 

http://news.sky.com/skynews/Home/UK-News/Video-Drug-Discovered-Using-Tadpoles-Could-Prevent-Spread-Of-Deadliest-Skin-Cancer/Article/201103415959042 

 

Frank

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