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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mark1101's picture
Replies 10
Last reply 4/19/2014 - 1:35am
Replies by: JoshF, BrianP, kylez, Anonymous, mark1101

Aynone who has already gone through Il-2 able to tell me what the treatment was like and how side effects impacted them?

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Janner's picture
Replies 4
Last reply 4/18/2014 - 11:45pm

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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My mother is currently going through one of the toughest situations of her life. As her daughter, I truly don't know how to vent or show how scared I am about her diagnosis today. Today after 4 weeks of visiting specialists and getting referred from hospital to hospital, it has come to the conclusion she has Choroidal Melanoma. It all started about a month ago when she started to complain of flashes of light, black spots and floating objects from her right eye. She said she had immense pressure on her right side of her head and her headaches and migraines were getting worse. Ever since I was a child, my mom has suffered from migraines, but doctors never said anything about them. When she went into her primary 4 weeks ago about her vision and headaches, her primary measured her intraocular pressure and said it was high. He referred her to a basic ophthalmologist , (which took her insurance 2 weeks to approve) and he was the one who determined there was retinal detachment and a "mass" pushing on the retina. Once again she was referred, to another specialist, now this doctor I completely have the highest respect for, he was thorough, he has been wonderful and supportive, he was the one who did the B-scan, ultrasound, determining the tumor was inside the eye, thus ocular tumor, when I saw the ultrasound, my heart started to race, the tumor not only takes over half of her eye, but about 3/4 of her eye. As I write this I find myself tearing up, I am truly scared, I just found out about this today. I dont live with my mom, and my moms English is very limited, I feel like she is just so unaware of what is truly going on, and I dont want to show how much anxiety and how scared I truly I am for her. This doctor does not specialize in intraocular tumors, so we have now been referred to another specialist, but now we must wait until insurance approves, and it is a waiting game. They still need to do an MRI and blood work they said to see if she doesnt have tumors in other places or if it has spread. I am really scared, my mom is my best friend and this is just not easy for me to take in.

Elizabeth G.

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Leslie'sHusband's picture
Replies 2
Last reply 4/18/2014 - 11:12pm

Les' surgery went well on Tuesday.  She had the clinical trial minimally invasive (laproscopic) complete lymph node dissection of her left groin.  Only three 1 inch long incisions in her thigh, one of which has the drain in it now.  There are definitely some divots in her thigh/groin area showing where they removed tissue below the skin.  Other than some nausea/vomiting from the anesthesia she had done very well.  We made the drive home from Duke on Wednesday afternoon, and she's getting around very well.  Now we begin another wait on the patology report on the removed lymph nodes.  We're due back at Duke with Dr.Tyler on the 28th to discuss the pathology, and possibly treatments.  I'm hoping that these removed nodes are clear.

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Anonymous's picture
Anonymous
Replies 3
Last reply 4/18/2014 - 9:16pm
Replies by: DZnDef, BrianP

I'm wondering if anyone has ever tried any alternative treatments(ie, natural/nutrition)? I've been reading about Dr. Gonzalez in NYC.  There are 3 melanoma case studies on his website.  Very interesting.  

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Thankful for this site. It was the first thing I came across when Googling. The positive stories and photos are making me feel ok.

I have just left the GP's office for my test results and am so confused. A mole I had removed under doctor's orders has come back malignant, and now I have to wait to see if it has spread.

I am quite shocked, and trying to keep a happy face for my children. Husband is at work.

She said I would be contacted within two weeks for an MRI and further testing.

If I post the microscopic description, I hope there is someone who will be able to give me some further info, good or bad. I work in the arts - have always failed science and it all makes no sense to me - apart from the word malignant. I know that's not good.

Also, how does everyone know what stage they are? I wasn't told. How can I find out?

Ok, here is the microscopic description:

Sections reveal a melanocytic lesion which has an assymetrical architecture and in areas a poorly circumscribed peripheral margin. A lentiginous growth pattern predominates with epithelioid melanocytes and focally there is early confluence of the junctional lentiginous melanocytic proliferation. Isolated foci of pagetoid change are seen and there are a few nests of melanocytes at the dermoepidural junction. In a perifollicular region there is mild fibrosis and pigmentary incontinence. A benign melanocytic naevus is seen on the deeper sections and this is clear of the margins. Focally there is fibrosis and chronic inflammation, consitent with regression.

Conclusion: Left clavicular area. Malignant melanoma in situ extends to .7mm from the closest peripheral margin.

 

Does that make sense to anyone??

If it's bad just tell me. Honestly I would prefer to know. At the moment I have to wait for up to two weeks to hear from someone who will be able to book an appointment for me. Ugh. Torturous right? And it's Good Friday tomorrow, so no chance of hearing anything soon I would imagine.

The thing that is freaking me out, is I have been feeling awful for about two years. The GPs kept putting it down to my vegetarianism, despite my iron levels being fine. Or a virus. Is this why?

I will stop rambling now. Sorry. I just walked in from the GP, put the television on to keep youngest child occupied and proceeded to Google. I'm not usually quite so verbose. Thank you if you got this far. I think I'm just shocked.

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My sister was informed today that she has a Negative BRAF gene mutation KRAS.  SHe's not eligible for many clinical trials because her mutation is rare.  Would like to know if any others share this same type of mutation and if so what treatment option they tried.  

 

We are thinking of doing the IL2 first, then move to Yervoy, and hope that later on in the summer she will be eligible for a antipd1.  

 

Can anyone give any advice on their cancer or a loved ones?

 

We need just a glimmer of hope..

 

PS her husband also has Melanoma stage 4 and so you can imagine how heartbreaking all this is with having 2 small children.

 

BTW she is 46, no other health issues, good shape, liver nodule is 3cm and the lungs are even detectable.

 

 

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tcell's picture
Replies 9
Last reply 4/18/2014 - 6:02pm
Replies by: BrianP, tcell, Mat, pigs_sty
secondhalf's picture
Replies 1
Last reply 4/18/2014 - 5:41pm
Replies by: SoCalDave

We are  in the early stages of planning Round 2 with Metastatic Melanoma Stage 3.  One option for treating the is isolated limb perfusion chemotherapy at Georgetown.  We turn to those of you that have blazed this trail - what are you thoughts on this treatment?  

We are still waiting to see if this tumor is BRAF negative like the first one that was found in the axilla.  The 'new' tumor is in that same side and it grew quickly.

We also have our Johns. Hopkins visit scheduled.

Thanks in advance!

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Shelby - MRF's picture
Replies 1
Last reply 4/18/2014 - 4:43pm
Replies by: Tina D

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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Anonymous's picture
Anonymous
Replies 0

For east coast there's now some listing.  On MIF's melanomaforum.org

 

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Shaggy 's picture
Replies 5
Last reply 4/18/2014 - 11:37am

Lets see how many of my old mates are still out there.Ive not been on here for about 2 years.SHAGGY...the Fireighter from England for thos of you that remember me.

 

Diagnosed with stage 3 MM in July 1995..nearly 19 years clear.im on facebook as well if you want to add me.Ian Mutch and my pic is me stood near my fire truck

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Anonymous's picture
Anonymous
Replies 3
Last reply 4/18/2014 - 11:08am
Replies by: kpcollins31, melissa ann, Anonymous

My husband had a melanoma mole removed over ten years ago before we even met,  and was fine ever since.  Last year he noticed a lump under his arm, had a ultrasound done and was told it looked benign. Now 7 months later, at the insistance of his dermatologist, he had it looked at again and asked for a biopsy.  They just told him today it is melanoma.  I am in shock.  we don't even know what stage yet, but since it was something he could feel and has been around since last year, that makes us feel worse about prognosis.  It would help if I heard from others who had been through somthing similar and had a positive outcome?  So sad today.

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5374brian's picture
Replies 7
Last reply 4/18/2014 - 7:59am

It has been several months since i was last looking over the boards and posting comments. We were scheduled to start a PD1 trial July 11 but that had to be canceled due to Keri getting DVT in left leg at 1 am that morning. Since then she has had surgery for the DVT against several doctors suggestions, After the surgery she did have a rough time and we went into hospoice care. Hospice worked with us on pain management for a few weeks and we thought she was climbing back up the hill. A few weeks later she was having sever pain attacks in the abdomen area. We went back into hospice for 10 days and on the 8th day she woke up feeling fine with no pain and a appetite. We have been back home since working on eating little meals each day and keeping pain under control. Her pain now is controled by a PCA pump. Today was a big day for us. Keri came out of Hospice care for a 3 rd time since her diagnosed Stage 4 in Dec 2012 and will be returning to Moffitt Sept 26 to get scans, tests, and a plan of treatment. She has been a miracle to all of us. She said 1 week again if i am going i want to go fighting. She is not 100% but she has been through 3 surgeries and told she wouldnt make it several times. I say all this to everyone so you can know not to every give up. She has been determined since the beginning to fight and now we are back again. I feel so blessed to have her in my life and cant wait for the doctors plans on Thursday. 

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Marianne quinn's picture
Replies 5
Last reply 4/17/2014 - 11:18pm

My husband was in the 10 mg. Ipi arm of the ipe vs. interferon trial. He did very well with the induction phase- being careful with his diet and a rash that is pretty easily controlled with Benadryl and lotion. He was 3C.

2 weeks after the induction phase, a CAT scan was done, then a PET.. It showed a 2 cm. nodule in the liver by his diaphgram.  We were devastated. A biopsy was done ( with difficulty) and it was positive.

Stereostatic radiation or ablation was offered. A very confusing story, but  another CAT scan for placement for stereosstatic radiation was done  2 weeks  later. and all the radiologist said was "very small, a blush. We elected to go with ablation for a variety of reasons. We are wanting another CAT scan before surgery as the radiation oncologist could not give us a dimension on the lesion. I don't know why as the lesion on the CAT scan and the biopsy done with CAT scan was very easily seen. This is upsetting.

My question is - has this happened to anyone? The oncologist says the ipi is obviously not working due to him being NED prior to entering the study .( December 31, 2013) I am not sure that is correct. We are seeomg  a general oncologist who we like very much but who admits she has little experience with ipi. I know that ipi can have a delayed reaction and can make a scan look horrible at first. The main concern seems ti be that he was NED prior to the study. He has been removed from the study.

If this lesion has disappeared, he wants to get back in the study. Is that possible?

Has anyone out there had good results with ablation?

Has anyone gone from NED to Stage 4 while on ipi? What happened to you?

I was so worried about the 10 mg ipi side effects etc. It never crossed my mind that a lesion would show up right after he reached therapeutic levels . This sucks.

Any info will be greatly appreciated. We will probably ask for a consult with a melanoma specialist after the surgery. We would have asked for one earlier, but things were going so well there did not seem to be a need.

Thanks.

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