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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Ksprin's picture
Replies 2
Last reply 1/13/2015 - 4:43am
Replies by: JustMeInCA, Wader

Hello! I'm new and my names is Krysti. Can anyone recommend melanoma specialist in the Bay Area? Thanks!

Krysti flynn 

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AshleyS's picture
Replies 3
Last reply 1/12/2015 - 9:52am
Replies by: jbronicki, ncdaniel, JoshF

I'd appreciate advice for a melanoma specialist from MD Anderson.  I'm going there for a second opinion. Thanks!

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Question on surgical margins. Since I'm most likely looking at recurrence in right cheek, the head & neck surgeon conferred with my medical oncologist on margins and have decided they will go with 1cm. I had asked her to consult with surgical oncologistwhi specialized in melanoma I consulted with in past and he feels that's unecessary. Couple of things he said:

1) Suture Granuloma is possible or other odd looking tissue that formed nodule. If that's the case, aggressive surgery planned is not necessary.

2) Even is it is recurrence taking 1cm won't change prognostic factors as much as more metastasis would or recurrence in lungs etc...

He said he would do surgery if I want but have to wait until 21st and said surgery Tuesday is an emergency...my choice. This puts wrinkle into everything...I trust all my doctors and asked them to discuss the surgical plan and next steps which I hope will happen tomorrow so I can decide whether to go in Tuesday for surgery with ENT or do consult with sugical onc with surgery following week.

Anyone have similar experiences? What did/would you do?

Also anyone out there who reads this have a suture granuloma? Was it painful? Was it nodular?

Or nodular lump by scar that looked odd on CT/MRI and it turned out to be benign? 

Josh

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

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misenber's picture
Replies 4
Last reply 1/14/2015 - 9:48am
Replies by: misenber, Anonymous, Janner

Last week I was told that the mole I had removed from my back was melanoma and is Clarks Level 2, less than 1 mm.  I was to havethe spot removed tomorrow, but the surgeon called and told me they have to postpone because after speaking with the pathologist, he is going to have to remove a lymph node and test it and wouldn't have the eqipment available for another week.  I am, of course distraught, but also very confused. I researched the Clarks Level 2, but can't coordinate it to the Melanoma staging, which seems to give more specific information about treatment, seriusness, prognosis, etc. I have not yet seen an oncologist, I am dealing with a general surgeon who will refer me to an oncologist after the surgery. I am 63 years old and this is my first diagnosis of melanoma. Can someone point me to a good place to get straightforward information that is easy to understand?

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Tracey R62's picture
Replies 5
Last reply 1/11/2015 - 10:33pm

Question on gene mutations and treatment. What would you believe to be the best treatment for melanoma if one DOESN'T have BRAF or a CKIT mutation or the other more common one?

Iam going in for surgery to remove my toe and my left groin lymph nodes Tuesday and just weighing my treatment options.  Sorry I don't have any more information, I am waiting on the actual report to be emailed then having the medical oncologist interpet it.  I just wanted some patient feedback.  Thank you.

Tracey R62

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Ginger8888's picture
Replies 14
Last reply 1/18/2015 - 12:26am

I was diagnosed with melanoma on Jan 17th 2014, had my mole removed then had surgery on Feb 28th with lymph nodes removed from my neck..At the end of April i did the 30 day HD interferon and failed it so was changed to Yervoy and finished it Aug 13th, my first scan showed that it was working and got rid of 2 spots in my lungs..I had my next scans Dec 13th and finally got my results yesterday and am now NED..Scans again in 3 months..Whoot!!

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As you all may know I am about to have my melanoma removed and skin graft also the sentinel node will be done all at once.. I was told I was going to have a drain in after the node biopsy.. How long did you have yours in for? Or do you know how long? Sorry just super nervous I've never had any surgeries before .. This is my first one ever.. Thanks to the melanoma :( thanks for your support everyone 

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Anonymous's picture
Replies 10
Last reply 1/20/2015 - 9:03am
Replies by: Gene_S, Jacqueh27, rick1981, JustMeInCA, Anonymous

My Daughters levels have gone from 8000 to 592 before her third infusion. She has liver tumor. She finished her fourth infusion last week and will have scans in four weeks. Any YERVOY responders have the same type of indicators it was working?

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Nurka's picture
Replies 1
Last reply 1/11/2015 - 8:35am
Replies by: Teochasse

Hello,

 

My mother is IV Stage metastatic melanoma.

For the moment is takinf Zelboraf,

But we are afreid that it can stop.

Therefore we are looking how we can buy Dabrafenib and Trametinib. We are from Ukraine and for the moment this medicine is not registered in our country.

Please help us to buy it abroad and how it can be done? Where to go, whom to call? Any information will be much appreciated.

 

Thank you in advance!

 

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_Paul_'s picture
Replies 11
Last reply 1/18/2015 - 11:10am

Here is an update for anyone considering TIL. I just met with Dr. Lee at the Seattle Cancer Care Alliance about enrolling in the "Tumor-Infiltrating Lymphocytes (TIL) for Metastatic Melanoma (2643)" trial (http://www.seattlecca.org/clinical-trials/melanoma-NCT01807182.cfm)

I specifically asked about mortality rates, since some people on this board have expressed concern about the treatment itself killing people. Dr. Lee assured me that none of the patients she has seen in Seattle have died as a result of the treatment. As many of you know the treatment itself involves traditional chemotherapy to destroy the bodies ineffective TIL cells, followed by an infusion of lab grown TIL cells, followed immediately by a series of IL-2 administrations to “feed” the new TIL cells. The entire process is done in the hospital and the patient is transferred to the ICU for the IL-2 part of it. Testing is done in advance to ensure the patient is healthy enough to undergo treatment.

The great thing about Seattle is that the lab grown TIL cells are cryogenically preserved until the patient needs them. So in my case, where Yervoy appears to have halted the progression of my disease (except for one tumor which is growing, but which will also be harvested to extract the initial TIL cells from), they will wait until there is progression before moving to Step 2, which is the actual treatment I outlined above.

My original plan was to try Yervoy, and move to Opdivo or Keytruda if it didn’t work. But my new plan is to wait and see if I get a durable response from the Yervoy, then try TIL if that fails, and then try anti-PD-1 if that fails. The reason is that you have to be fairly healthy for the TIL. If I left TIL for last, I might not be healthy enough by then to endure the treatment.

I gotta tell you though, that it is pretty awesome to have any choices at all! I am a skeptic at heart, and when I first heard people saying stuff like “this is the best time to have melanoma” but had already seen the (now outdated) survival statistics, I thought, yeah right, this is just stuff people say to keep our hopes up but the reality is that I am doomed, plain and simple. Well that skepticism is not justified. The stuff people are saying is true. I’ve been converted. I’m a believer. Woohoo!

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Anonymous's picture
Replies 4
Last reply 1/11/2015 - 12:10pm

I was first diagnosed with melanoma Stage 1b in 2004 (Breslow 0.44 mm, but had few mitoses, so was restaged from 1a to 1b when the new classification came in) treated with WLE. About a month ago, I started to have upper/middle back pain, which I thought was due to a poor posture. It was sort of migrating from between the shoulders to the sides, upper part of the back etc. It is tolerable, and I don't take any pain killers. I don't have a pain at night and hot shower provided some relief.

Because of my melanoma history, I am always hypersensitive to any pain and I saw the PCP for the piece of mind. She sent me for PT and upon my request/insistance to get an X-rays of thoracisc spine, which showed a compression fracture at T8 level. She now wants me to test for osteoporosis, but I am scared to death about a possibility of metastatic spread. I am 43 years old woman and how likely it could be osteoporotic fracture??? Well, I have certain risk factors: use of Mirena, low weight, lack of excersise, perodic use of high doses of proton pump inhibitors  (due to acidic reflux), maybe low Vit D... I pray that this is osteoporosis, but I am trying to understand what I have to do in a worse case scenario. I don't have an oncologist (I live in Boston) because I only saw a dermatologist all these years. How do you get strenght to go through Stage 4 treatment? I have 2 kids age 8 and 10 and I afraid that I will never see them grow up. Having Stage 4 diagnosis is like a death sentence to me. I'll appreciate any support and help. Thank you for listening.

 

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Jsneathen21's picture
Replies 6
Last reply 1/10/2015 - 3:53pm
Replies by: Anonymous, _Paul_, Jsneathen21, Treadlightly, Gene_S

Has anyone had to have a skin graft where there melanoma was?!! I have to have one mine is located in my left shin!! Please tell me were you in a special cast ? How long did it take for you to heal?

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jpfletchjr's picture
Replies 3
Last reply 1/9/2015 - 8:52pm
Replies by: Prd10, Lil0909

Last year, to celebrate our 40th aniversary, we purchased tickets for a trip to New Zealand and Austrailia that is scheduled for this February. In April my wife was diagnosed with melanoma in her neck, abdomen and in the lung.  We have gone through IPI and it worked well enough to eliminate the spot in her neck and her abdomen, but the mass in her lung persisted.  She started the regimen of Mekinist and Tafinlar in December. I am not sure she will have the energy to complete the trip, as the meds are wrecking havoc with her body, but I promised her we would go if at all possible.  

I have not asked her doctor yet, but does anyone know if the xrays at the airport would do harm to the meds?  I anticipate walking them through and having TSA inspect them manually, but if they did go through the machine, would that be a problem?

More importantly, can anyone suggest a good insulation pack that would be good for the mekinist?  I have looked at several insulated packs and travel bags on line, but am not sure which would be our best option.  The flights from the US east coast to New Zealand are going to last a looooooong time!

I also believe we can get clearance at the airport for frozen ice packs that are larger than 3.4 oz.  does anyone have experience with that issue?

Thanks for your input.

John

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tsykes1's picture
Replies 2
Last reply 1/9/2015 - 7:37pm
Replies by: tsykes1, Janner

Sorry guys to bother you a All , but I found. Hard scab on upper thigh last night and I picked it off .  It was blood . See I just had my 3 month check up and NED , so my mind is thinking more Melanoma. It is not bleeding  but it is a little bump size of pin head .... Any advise 

Terri Sykes

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DZnDef's picture
Replies 1
Last reply 1/10/2015 - 10:33am
Replies by: Anonymous

This is a fascinating one-hour discussion on cannabis oil for those curious about it.  The talk is free at this website for the rest of the day (you don't even have to provide an email address) but I believe they're taking it down after today (in other words, you'd have to be a subscriber to listen to it after today).

http://thecuretocancersummit.com/spotlight-constance/?inf_contact_key=7c...

 

Maggie - Stave IV (lung mets unknown primary) since July 2012

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