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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LibbyinVA's picture
Replies 1
Last reply 4/14/2014 - 2:11pm
Replies by: 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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scroggins's picture
Replies 4
Last reply 4/14/2014 - 6:27am
Replies by: scroggins, Janner, Anonymous

Hello everyone,

I just discovered this forum while searching for information about melanoma.  It's great to see such a supportive community, and I wish everyone the best with their fight.

I just had two suspicious moles excised and sent for biopsy, and I was hoping someone here could offer their opinion on my case, as it is slightly abnormal.  The condensed version is that I'm an American living in Oman, which is obviously a region where they aren't quite as familiar with melanoma as in the west.  As a result, it was a bit challenging to find a doctor who was semi-knowledgeable and knew the correct procedure to follow.

I first noticed changes in a mole on my shoulder about four weeks ago, but because of the lack of familiarity with the potential dangers of melanoma, it was not removed until today.  They removed a second mole at the same time which has also been changing (very slowly) for the last 4-5 months.  The biopsy results should be available after about ten days.

Given the significant wait between when I first noticed the changes and the excision, do you think it is okay to wait an additional ten days for the biopsy results without doing any further testing of any sort?  

Thank you in advance for sharing your thoughts!

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Nils's picture
Replies 5
Last reply 4/14/2014 - 2:20am
Replies by: Anonymous, Janner, Teochasse

Just had a suspicious mole/blemish removed Tuesday. Found out yesterday that it tested positive for melanoma. Have to go back and get it exited (which I think means completely removed) June 7th. I decided to look up melanoma this morning and am now freaked out. Us it OK to wait a month to get it exited (whatever that means)

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yazziemac's picture
Replies 3
Last reply 4/13/2014 - 10:27pm
Replies by: MattF, Teochasse, jahendry12

Hello

My husband is currently undergoing 33 radiation treatments for Stage 3 melanoma in his neck.  His initial tumour was diagnosed last July and he had surgery to remove it.  It recurred in January and he had a radical neck dissection in mid-February, 2014.  Of the 26 lymph nodes that were removed, none were postive for melanoma.  We are still processing this situation emotionally and I am very thankful to have found this site.  The comments from those who are further along this path are very helpful.  We chose to do radiation because his margins in one area were not clear after the neck dissection.  The radiation treatment disqualified him from doing the clinical trial that was another option.  The third option would have been to follow the radiation with one year of Interferon Alpha, which we decided against.  My husband, Peter, has finished 13 out of the 33 radiation treatments so far.  He is very fatigued and his skin is quite burnt already.  His throat is so tender that he is very limited in what he can eat, and his appetite is small.  The symptoms will intensify over the next 4 weeks, which will be hard to see.  Hopefully the radiation will kill whatever cancer cells are left in his neck.  We live in Kitchener, Ontario, and he is being treated at Grand River Cancer Centre with Dr. Knight and Dr. Fortin.  We also had a second opinion from Dr. Hogg at Princess Margaret before making our treatment decision.  He is BRAF and NRAS negative.

Yasmin

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Anonymous's picture
Anonymous
Replies 7
Last reply 4/13/2014 - 5:49pm
Replies by: secondhalf, Linny, Anonymous, Bruce Davis, Janner

What are the differences between getting treated at a Melanoma center verses Cancer Treatment Centers of America?  

I am weighing the options between Johns Hopkins and CTCA Philadelphia.  I have met patient with cancers other than melanoma that loved the CTCA , buts I am concerned that the CTCAs might not be most up to date with melanoma treatments

Thanks for your input.

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Rocco's picture
Replies 1
Last reply 4/13/2014 - 11:09am
Replies by: G-Samsa

Friend of mine notified me that their family member recently joined our ranks with advanced melanoma - brain and lung mets.  Mentioned that the individual is in the midst of a Phase I trial - Ipi and Whole Brain Radiation. I believe his Ohio based trial (at The James Cancer Center - part of OSU) is part of the National trial # NCT01703507.

Wondering if anyone out there has gone thru a trial with WB radiation and Ipi?  Any thoughts or experiences to share?

 

Thanks in advance - and hang in there everyone!

-Rocco

Stage IV since 2005, Ipi responder since 2009, NED

Luke 1:37

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hawaii marcus's picture
Replies 3
Last reply 4/13/2014 - 12:33am
Replies by: Kim K, hawaii marcus, 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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jae p's picture
Replies 7
Last reply 4/13/2014 - 12:24am
Replies by: Kim K, jae p, Anonymous, SABKLYN, washoegal

Hello, everyone!  It's taken me some courage to post here and embrace the fact that I have/had melanoma.  Funny how it's taken me so long to accept it.

Last month I went through the whirlwind of diagnosis (stage 2a... ulcerated...mitotic rate 2) and WLE and SNL surgery.  All was clear, only good results.  I wrangled a good melanoma specialist for those check-ups they recommend, and I'm going to begin seeing her in two weeks.  I have no idea what the visits entail.

I accidentally saw 2a's survival statistics, and have also read the way people frame melanoma when they discuss it, as though it's only a matter of time until the next recurrence, until it gets worse. Since I'm of course worried about this, it's very difficult to just carry on with my life despite my (current?) good news.  I hope the anxiety will pass, but more than that I hope what I'm gleaning from what I read doesn't have to be true for everyone.  I'm very scared. :(

Thank you for listening. I admire this community for all its resiliency and empathy for one another. It's really wonderful!

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jag's picture
Replies 2
Last reply 4/12/2014 - 2:31pm
Replies by: arthurjedi007, BrianP

does anybody have an idea as to how far along in the trial process PD1 antibody is? I.E, when can you get it without a trial?

Regards

Insert Generic Inspirational Motto Here

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michaelinsocal's picture
Replies 18
Last reply 4/12/2014 - 2:29pm

Hello everyone. Forgive me if this topic has been asked before. I am scheduled to undergo Interferon Alpha treatments next month.

it will be a 12 month program, 4 weeks of beonh given the drug through IV and 11 months of self injected shots. 

Ive done quite a bit of research and understand the side effects from the most common to the severe. I'd like to get feedback as well as any advice on how to deal with it initially and any helpful tips to survive the entire 12 month process.

i am planning on returning back to work, however just part time and claim partial disability until I can work myself back up to a 40 work week. I work retail grocery and being on your feet for 9 hours a day will be a challenge.

 

thanks in advance. Any feedback is appreciated.

Michael

 

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DZnDef's picture
Replies 16
Last reply 4/11/2014 - 10:35pm
Replies by: kylez, DZnDef, Anonymous, tcell, Janner, Carole K

Has anyone on this board chosen the Alternative Treatment path with any success?  I was just diagnosed Stage IV (mets in lung) unknown primary.  I'd like to look into ALL treatment option including both traditional and alternative.  Just wondering if anyone on this board had tried something they'd recommend.

Thanks,

Maggie

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Anonymous's picture
Anonymous
Replies 9
Last reply 4/11/2014 - 5:38pm
Replies by: DZnDef, Anonymous, arthurjedi007

Hi all,

I have been diagnosed Stage IV melanoma, unknown primary (melanoma found in my lung).  Does anyone have a recommendation for a good "melanoma speicalist" in my area?  I live in Orange County, California (that's Southern California).  I am willing to travel if necessary, but given all the sunshine here, I would expect we would be crawling with melanoma specialists locally, no?

I asked my Thoracic Surgeon for a recommendation to a melanoma specialist and he referred me to Dr. Jakowatz of UCI Medical.  He is a surgical oncologist.  Is that the right "type" for me to see?  I have my first meeting with him tomorrow (Wednesday) but I have heard mixed reviews about him so I may want to keep looking.

Everyone on this board seems to stress the importance of finding a good "melanoma specialist".  I'm all ears for recommendations.

Thanks,

Maggie

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BrianP's picture
Replies 5
Last reply 4/11/2014 - 5:32pm

On my last CT scan I had some thickening of the small bowel (site of previous disease) which was "concerning for worsening metastatic disease."  I did a petscan a few days ago and the scan showed no FDG uptake at the area of concern in the small bowel.  Of course that was a huge relief!  The other part of the report that I found very encouraging was that the two original nodules continue to be stable but more interestingly show no FDG uptake.  A small nodule in my lung shrank from 5mm to 2mm in 3 weeks and also shows no FDG uptake.  Essentially there was no FDG uptake anywhere.  Has anyone experienced anything like this with petscan reports before.  Can any assumptions be made about the tumors at this point?  Of course I would like to assume they are "dead" but I'm not sure you can make that assumption at this point.  Any similar experience or knowledge would be greatly appreciated.

Brian

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Tina D's picture
Replies 13
Last reply 4/11/2014 - 2:25pm

I am thankful to say that my scans this week remain stable. Going into the scans they told me I have had an 80% response, so that is where I gratefully remain. I am aware many are currently struggling, and I have lost a dear friend in the past month to mel. Just posting as an encouragement for all.

Will be seeing an endocrinologist next trip to Vandy to try to get my thyroid and adrenal situation balanced out, but I feel very well & only symptom really is fatigue. I think the fatigue is largely endocrine related issues.

Hopefully this will be approved soon so everyone can have access.

Tina

 

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Anonymous's picture
Anonymous
Replies 6
Last reply 4/10/2014 - 10:16pm
Replies by: Anonymous, hdevlin, NYKaren, melissa ann, arthurjedi007

I'm wondering if anyone has had any experience with severe itching after IL-2 treatment. It has been almost six weeks and my dad is not getting any relief.  Nothing has helped so far (gabepentin, Benedryl, cold compresses, etc...), it's maddening. Any suggestions?

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