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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evleye's picture
Replies 5
Last reply 4/23/2014 - 8:04am
Replies by: evleye, dsfarms13108, kylez, Anonymous

Is there a website or document that summarizes all the different treatments available (FDA approved and trials)?  I am so confused by all the names and abbreviations!  I find out tomorrow what my plan of action is for my treatment and want to be prepared with some knowledge on the different options I may be presented.  Thanks!

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I don't know about you but when I read articles like this I feel I could read the same within 5 years from now for advanecd Melanoma:

http://www.theguardian.com/society/2014/apr/16/patients-end-stage-liver-disease-hepatitis-c-new-drug

It seems that all of a sudden they were able to cure 90% of all patients suffering from this desease. I am happy for those patients and hope the same for people suffering from advanced melanoma (knowing that of course on the level of molecular biology this in not comparable at all).

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Anonymous's picture
Anonymous
Replies 6
Last reply 4/23/2014 - 6:58am
Replies by: Anonymous, POW

I was diagnosed Stage IV in January and BRAF+ soon thereafter. Significant tumor load affecting all major organ systems, though I hadn't felt that anything was wrong until December. By the time I finally started treatment, I could barely walk across a room without help.  No brain mets. Getting treatment at Providence Portland.

After two months of Zelboraf, my tumor load had decreased by half and I was feeling much, much better. Soon after, I noticed what I thought was a new tumor under my scalp and then more in my neck, two new nodules near the primary, and another bump I could feel on my shoulder had started growing again. I was hoping for longer on the Zelboraf, but you get what

you get.

I've been given four options:

(1) IL-2

(2) Ipi (with intent to join an Ipi/Nivo trial as soon as the new arms open, but that could be weeks)

(3) IPI and GR-MD-02, a galectin inhibitor (Phase 1 trial, 85 days. I'd almost certainly be in on the lowest dose as it is just starting and there's no dose escalation for individuals.)

(4) Randomized trial, IL-2 with SBRT or IL-2 alone. 

All this keeping in mind that the approval of Nivomulab is imminent.

I'm scared of the IL-2, not so much of the side effects, but because I am reluctant to miss out six weeks of what could be my last summer with my kids. OTOH, I'm relatively strong right now and might not be able to tolerate it later if another treatment or treatments fail. Though the chance is small, there is still "home run" potential.

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Anonymous's picture
Anonymous
Replies 9
Last reply 4/23/2014 - 6:14am

I am newly diagnosed stage 4 patient with mets in spleen liver and brain. I am currently on vem as have tested Braf positive. However I am sick with worry about my prognosis. I am only 33 but I am not going to make it to my retirement am I? X

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kellygrl's picture
Replies 10
Last reply 4/23/2014 - 2:42am

My husband was diagnosed with brain mets 3/12, had WBR, tolerated well, but tumors did not respond. He got 14 good months out of Zelboraf, tolerated well... then Zel quit 9/14. Gamma Knife in Aug 9/14, tumors responded. Has been on Dabrafenib/Trametinib combo since 11/14, recently added Yervoy to the mix & has had 2 infusions so far. A second Gamma in Feb and results today from all of the above.... brain mets shrinking and some necrosis from gamma! Most likely a third gamma in a few mos to get remaining tumors.

Keep that Positive Mind and Attitude!!
Stay Strong and prayers sure don't hurt either. :)

Kelly

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hawaii marcus's picture
Replies 4
Last reply 4/22/2014 - 8:46pm
Replies by: hawaii marcus, Kim K, Becky

HI Everyone,

I have been free from my original cancer in my left nasal cavity since April 2013. I have mucosal melanoma and my 1 year anniversary PET scan found regional spreading in my left cervical lymph nodes. Lucky me!

An ultrasound this week showed 3 lumps, the largest being 1.3 CM and the smallest .5 CM.  I am a resident of Hawaii, and love my hospital, The Queen's Medical Center. But they suggested I follow up with my contacts from UCLA.

Unfortunately Hawaii only has 2 Head and Neck Oncology surgeons. I chose a 2nd opinion last year for my lateral rhinotomy, and a family member suggested UCLA. I met Dr. Glaspy (Onc) and Dr. Abemayor (H&N Surgeon). Surgery removed any tumor, but they didn't find much after my sinus surgery in Hawaii that found the malignancy. Then Dr. Glaspy suggested Interferon, but said the risks were not worth it for me.

In June I followed up with 30 doses of Radiation at Queen's. And now just following PET scans every 6 months.

 

This new discovery does not scare me, but Dr. Glaspy suggested I look at PD-1. Any one have good experience with PD-1?

I am reading lots of good things online about it. Only quirk is they do not offer PD-1 here in Hawaii, so I may be flying to LA a lot over the next year. Cha-Ching!! Not good on my bank account!

We are ready to kick this Cancer's A$$!!! Wish us luck!!

 

Aloha,

 

Marcus

 

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Pam S.'s picture
Replies 5
Last reply 4/22/2014 - 8:38pm
Replies by: Pam S., Maureen038, Anonymous

My husband (60yrs) dx stage 4 end of Nov was in his small intestine, lung and brain. Have had 3 gamma knifes -last MRI -only 4 tumors left (out of 9) . Has 3 tumors removed from small intestine in Dec-took him a long time to recover was going to go back to work Feb 3. Started IPI in JAN It didnt work.  he had multiple seizures on Jan 27--scared me to death-took few weeks to get over this too. So no work. In March SOB and 2 bronchoscopies. Tumor in RLL one bronchus cleared-the othe main bronchus tumor is very hard. Having 10 days lung radiation  Tumor size of baseball. Meanwhile found 1 vertebrea fractured and will do kyphoplasty to put cement in the spine- cancer not in spinal cord at this point. Also will need some radiation on the spine. Also found mets in 1 rib and possibly on the liver and adrenal gland. Will have pet scan on Thurs. Am scared to death--dont know what to do-he is having such a rough time with fatigue-no energy-forgeting things-no appetite-he just want it to end. I am afraid with all this radiation he will never feel good again. I almost forgot will have bracyy therapy for 3 wks for his lung..Anyone had similar experience ? any advice- we have great DRs at UPMC/Hillman Cancer Center He doesnot have the bfar mutation. I need someone to talk to that is going thru this. All family and friends smpathize offer help but they dont understand-I am tired of questions and the "im sorries"    Just need to someone in the same boat--I dont think my husband has a lot of time and i feel helpless.........Thanks to anyone who can respond Pam.

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Anonymous's picture
Anonymous
Replies 1
Last reply 4/22/2014 - 5:47pm
Replies by: Janner

In 2010 there were quite a few posts on Celebrex  any updates

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LibbyinVA's picture
Replies 2
Last reply 4/22/2014 - 3:46pm
Replies by: LibbyinVA, Anonymous

Does anyone have any recommendations for a dermatologist in the Chicago area? The patient is a young woman dx'ed with stage I melanoma. She needs follow-up checks. Should also mention she has very limited health insurance.

Thanks for any help you can provide!

LibbyinVA

Never, ever give up hope!

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Janner's picture
Replies 26
Last reply 4/22/2014 - 3:43pm

I don't often talk about my father here, but melanoma has claimed another warrior today.  At age 89, he was luckier than most that melanoma entered his life in his early 80's.  He fought cancer his own way.  The one advantage to being old is that all cells grow slower - even melanoma.  RIP Dad!

http://www.MelanomaResources.info

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Anonymous's picture
Replies 2
Last reply 4/22/2014 - 4:25am
Replies by: Anonymous, Janner

Hi All -

 

I had a mole on my stomach , of about six years, removed last month (I am 28). After more than 3 weeks of not hearing back on the path report, I assumed no news was good news. I finally heard from my dermatologist that it came back positive for melanoma. 

I am waiting for my scheduleed appointment with an oncologist, but did see my pathology report. It took so long because the lab actually consulted with another doctor on the pathology slides for help interpreting. The second consultation saw no vascular invasion, but noted that it was an "unusual" melanoma and noted to the lab "thank you for forwarding this problematic and interesting" case. 

Of course I can't help but get nervous with that wording! Has anyone had a similar experience? I am assuming that it is great there is no vascular invasion, but it's hard not to get anxious hearing a doctor call you "problematic..." 

I am meeting with a few oncologists - surgery, dermatology, and medical oncologist - at the request of the specialosr. We'll discuss treatment, get my (third) consultation, and schedule additonal surgery, but I would love to hear any similar stories.

 

Cheers!

M

 

 

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Cbs805's picture
Replies 4
Last reply 4/22/2014 - 12:13am
Replies by: Cbs805, oceanbeck, Anonymous

My husband started the Merck expanded access program last week at Beverly Hills Cancer Center.  Dr. O'Day, a renowned melanoma specialist is running it. We have been going to BHCC since his diagnosis which was last April.  It is a great place.

CBS805

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Anonymous's picture
Anonymous
Replies 5
Last reply 4/21/2014 - 11:14pm

I finished ipi last year and showed a major decrease in tumor size. Then in Feb...scan showed NED. In the meantime most of the side effects...itchiness, fatigue is gone...thyroid issue is still there. Would this mean that the drug has stopped working? I know it sounds silly but we all know the crazy thoughts that run through our head.

Let's work for better treatments....for a cure!!!!

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tickyloo's picture
Replies 5
Last reply 4/21/2014 - 5:18pm
Replies by: tickyloo, evleye, Janner

Hello All

 

So I thought I would throw this one out there, you never know someone may have some knowledge experience.

 

Brief background - breast surgeon during biopsy urged me to see a dermo from mole on neck ( that I ha aldready had a scrape biopsy ) but seeing as I was on a medical roll I went ( thank the lord as I would never have gone back again ) and turns out I have two stage on melanomas.

So now I have had my WLE on both and the dr did a PET scan because he thought it a little different to have two primaries at the same time and the neck and toe are on the same side blah blah.

So, this is the part that is a little vague and I will find out more when I go back Friday , but he read my PET scan report out to me as he himself was reading it for the first time and from what I can tell some actibity was shown in thyroid but I believe this was from the CT element of the PET scan , some light up in my pelvis ( he assumed ovulating but I was two days pre menstrual ) and some stuff in my boob we assume from the biopsy . Cant say Im a great fan of assumption though.

 

So I had a thyroid ultrasound on Mon and I have a little nodule 1.3 cm ( i know this because I asked the tech ) on the same side as my neck MEL but Im sure I saw another one the other side.

So my question is, based on the rare chace a neck MEL can spread at stage 1 and the fact that MEL and tyhorids arent an obvious connection. If it were you what would you do ?

I feel Im just stage one and this could be overkill, or could it ? Who knows you get so bloody confused in all of this. I dont want to start acting like someone sicker than I am .

 

So has any one any experience of thyroids and neck MEL ?

 

Thanks so much as always

 

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Shelby - MRF's picture
Replies 2
Last reply 4/21/2014 - 4:25pm

Dear MPIP Community,

We were recently contacted by Integrated Research and Data, a research company based out of Ft. Lauderdale, FL. They are currently searching for melanoma patients, diagnosed at different stages, to participate in an online survey. The goal of their research is to understand different aspects of patient needs and treatment plans. 

The first step would be a screening done by phone. Follow-ups would then be done to get the right amount of different types of patients. If you are selected to participate in the study, you will be given a $150 Visa prepaid debit card. The survey, if you are selected, is expected to take approximately 40 minutes of your time. The survey is encrypted to meet HIPAA compliance and particpants will not be contacted afterwards unless it is to confirm your mailing address to send your payment. 

If you are interested, please email MelanomaStudy@IntegratedResearchandData.com and you will be contacted to pick a time that is convenient for you to go through the 5 pre-screen questions. 

I hope everyone has a nice weekend!

Sincerely,

Shelby - MRF

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