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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scots's picture
Replies 13
Last reply 11/7/2010 - 9:12am

I was  diagnosed with melanoma after a cycst was removed from the back of my head in September.

Pet/CT -clear, WLE - clear margins, SNB - neg,  melanoma 3.7

My oncologist has suggested interferon(1 month high dose, 11 month low dose) and radiation.  I have an appt. with the radiation oncologist on Thursday to discuss treatment.  I'm suppose to start interferon next Monday.  This has all happened so fast, so many questions.  Has anyone had any experience with goning through both treatments at the same time? or what order you went through both treatments.  After reading about interferon on the bulletin board I'm wondering if I can do both.

 

Thanks

Scot

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scots's picture
Replies 3
Last reply 11/7/2010 - 8:09am
Replies by: scots, debbieVA, BethA in VA

I live 2 hrs from University of Virginia Medical Center so I'm going to a local oncologists for treatment but I would like to find a melanoma specialist at UVA Cancer Center.  Doe anyone see a Melanoma specialist at UVA?

 

Thanks,

Scot

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Jim M.'s picture
Replies 14
Last reply 11/6/2010 - 10:10pm

Hi everyone,

 My recent scan two weeks ago came back negative!! Three years ago on 11/1 I had an LND to the right axillary and I've been NED since. I give thanks and praise to God. Miracles are happening every day. I thank so many of you for your guidance, knowledge and support. You are the wind beneath my wings. I thank my wonderful medical team, for their caring, expertise and passion to help others. I don't know where I'd be without my dear wife who loves me through the good times and the rough times. Our 2 children are such a special blessing and they keep me going. My prayers go out to all warriors, caregivers and loved ones.

 God Bless to all,

 Jim M.

Stage 3C

LND (unknown primary)

radiation 6 weeks

Ipilimumab and peptide vaccines: 3/08-10/08

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aspenglow6@yahoo.com's picture
Replies 8
Last reply 11/6/2010 - 7:25pm

New subscriber looking for anyone who can relate to vulvar melanoma or who has had experience using aldara cream??

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Springbok's picture
Replies 4
Last reply 11/6/2010 - 7:19am
Replies by: Springbok, washoegal, Janner, Anonymous

I came across a couple of articles on the Web that maintain that biopsys spread cancer.

This may be total quackery, but the argument goes that the body builds walls around concentrations of cancer cells to contain them, but that these walls become breached, and the cancer cells escape, when a biopsy is performed.

I am scheduled for a SLN  in a day or two , and these articles have given me pause for thought.  Any comments?

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mandys's picture
Replies 3
Last reply 11/5/2010 - 8:58pm

My father started taking the Ipi Trial in August.  After his 4th infusion he had unbearable itching and a rash all over his body.  His local doctor put him on some type of steroid to help with that problem.  Of course his local doctor prescribed only what MD Andersen approved of.(He is a patient there).  His last treatment was Oct. 8th since then he has symptoms of the itching, rash, white patches on skin, and now for the last 2 weeks he has been complaining of bad pain in his back, hip, & legs.  A lot of the pain medication has not really helped.  Could anybody on this board that has taken ipi or is on ipi now please shed some light on what kind of symptoms you have and how long can we expect the side effects to linger?  (Steroids have helped rash & itching)

Thanks so much!

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Janis B.'s picture
Replies 8
Last reply 11/5/2010 - 8:27pm

Hello all,

For over a year I've read this board and have learned so much, especially about hope and courage.  Now it's time for me to jump in, so I hope someone is out there listening.  My brief history - I was dx'd in 08 at Level IB, had WLE and SNB - no mets.  Recurrance 1 yr. later - three tumors in same area.  Isolated Limb perfusion tried and failed, followed by 2nd WLE and SNB.  Micromets to one lymph node.  Node dissection w/ no further cancer found.  Began interferon late 09, completed induction phase, unbalbe to contue maintenance phase because I got too ill.  Soooo - I'm now IIIC, NED since 2/10.

My question - my dr. at MDA seems to be saying that, with no active tumors, I'll be eligible for clinical trials if/when I progress to Stage IV.  Is melanoma a wait and see game? (sorry to use that word - this is so serious for all of us).  I'm BRAF pos.  Are the new BRAF trials just for those with active disease??  Is there nothing that will stay the beast?  Of course, I'm very very grateful to be free of the disease for these past months, but is there anything for Stage IIIC and holding?

I will be so grateful for any answers.

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EricNJill's picture
Replies 7
Last reply 11/5/2010 - 7:43pm

Tuesday we found out that Eric has a 3CM Vascular Tumor in the brain.  Eric's Oncologist in Dayton and in Pittsburgh both recommeded surgery because the tumor is new since September 8th's scan, it's vascular, and the size.  So we met with a neurosurgeon today and she said that she wants to do a PET and if his cancer has spread out from his leg and brain then she does not recommend treating the brain tumor.  She said she's never removed a Melanoma vascular tumor in the brain and that they were rare.  She said that he would never regain his peripheral vision and may even lose all his vision on the right.  He will never drive again.  She also said that she is concerned about the risk of infection because the vasular tumors on his leg are seeping and she said that infection can spread to the brain easily when you are doing brain surgery.

Has anyone ever had surgery on a Vascular Brain Tumor.  I am so worried and feel terribly helpless.

JillNEric in OH

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Hi,

  Had my checkup, PET/CT scans yesterday......I found three new sub q's last week, and showed them to my oncology surgeon and melanoma oncologist. I am not a good surgical candidate given my poorly healing leg post my ILP 14 months ago and unhealed wider excision wound from 5 months ago, that requires narcotic meds for the pain around the clock (in fact I am switching to methadone, oxcy's, effexor, and increase my gabapentin to three times a day (900 mg three times a day, currently on 900mg 2 times a day). So hopefully the wound will not preclude me from participating in the trial....supposed to start 11/17 or 11/18.

Vermont_Donna, stage 3a

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Carmon in NM's picture
Replies 4
Last reply 11/4/2010 - 9:42pm
Replies by: King, Linda/Kentucky, lhaley

I'm about ten daysinto the carbo taxol temodar trial I'm participating in at UNM Cancer Research Center and thought I would share how it's going in case anyone else is possibly going to do this type of study. Stage IV after two brain mets found 6/2010 (craniotomy & gamma knife) followed by an adrenal tumor showing up on scans 9/2010.

I've been lucky to have had zero nausea but they had me on a very precise supportive protocol for that. I'm losing weight but not for lack of eating! The biggest problem I'm having with food is that my taste is changing and a lot of things don't taste right. I'm making sure to keep a lot of quick and easy foods on hand so that I can eat constant small snacks through the day. Creamy soups are really great for that and still taste good.

The worst so far was day 4 and 5 of oral temodar which they warned me would cause bone and joint pain. I've never been one to get viruses or the flu so I wasn't prepared for the bone deep grating pain mostly in my hips and legs. As they also told me, it only lasted about 48 hours which helped me to get through it. Hot bathes and staying warm helped too. Now I'm dealing with neuorpathy which can be pretty intense too. For some reason it is mostly in the left side of my body and follows the major nerve meridians down my left leg. The only thing that really seems to help when it gets bad is the oxycodone I was prescribed for the intense pain I had after the adrenal biopsy.

We live at nearly 8,000' altitude so I'm also starting to feel the affects on my bone marrow with fatigue and shortness of breath. I guess it's a good thing I'm adapted to a high altitude! They told me the low point on my blood counts would occur around day 15, November 8th, so I'm already being very careful about staying away from public places and washing my hands constantly. My hair is due to start falling out then too so I'm taking a preemptive strike and a friend is coming over later this week to shear me!

So I guess my main message for anyone else is - don't be afraid! It is all very manageable. I have good friends who are coming and helping as needed but I'm still going out and feeding 6 horses every day, taking care of my house and dogs, and my husband is being a dear by helping with the cooking etc. If there were something I wish I had known about in advance, it is that my emotions would be so fragile and on the surface. I'm a very happy and optomistic person so it's a bit shocking to always be on the edge of tears. Just be prepared to be kind to yourself and for heaven's sake, surround yourself with happy, positive people! I've cut off quite a few people who insist on sharing the 'horrors of chemo' that they have read about on the net and about how many people are dying from melanoma!

Carmon in NM: Stage IIIB 9/2008; Stage IV 6/2010 with brain and adrenal mets; NED since 4/13/2011. It’s not what happens to you, but how you react to it that matters. ~ Epictetus

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ginakay's picture
Replies 5
Last reply 11/4/2010 - 7:39pm
Replies by: glewis923, ginakay, Anonymous

Anyone on E7080 w/TMZ ?

Though I walk through valley of the shadow of death HE is with me.

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Anonymous's picture
Replies 1
Last reply 11/4/2010 - 6:29pm
Replies by: glewis923

I am concerned we have not from Kevin. Anyone know how he is doing, please post an update. I was so sorry to read his post about IL2.

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I noticed that Lauren has not posted for a long time. I pray Jenna is doing well. Anyone heard from Lauren???

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jag's picture
Replies 5
Last reply 11/4/2010 - 9:44am

This sucks

Nothing like the efficiency of the US government.

http://www.reuters.com/article/idUSN0224943620101102

Insert Generic Inspirational Motto Here

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jolainajo's picture
Replies 5
Last reply 11/4/2010 - 7:49am

Hi everyone, I started my trial with Ipi, no temodor though, on Friday the 29th. Yesterday and today I am noticing my subcutaneous tumors which are large are getting larger and very very soar sometimes throbbing and hot. Is this normal?? Other side effects are just tired, Has anyone else had this?? Need some answers.. Thanks... Jolaina, Michigan

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