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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himynameiskevin's picture
Replies 10
Last reply 7/30/2012 - 12:23am

Just wondering if  anyone here of has had, or heard of substantial benefit from doing IL2 a second time, or being on temodar, or trying whole brain radiation?

These are a few things, up in the air, that I may trying that I haven't yet..

Sometimes just a single story of success is enough to get that spark, that optimism, and make these times of waiting easier.

Thanks, -Kevin

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sjl's picture
Replies 9
Last reply 7/30/2012 - 12:09am
Replies by: sjl, LynnLuc, Anonymous, King, aldakota22

My husband was diagnosed with malignant melanoma of the nasal cavity in April following what was thought to be a routine procedure for an inverted pappiloma.  On May 8, more surgery was performed on the nose to get clear margins and many lymph nodes were removed, one of which was malignant.  They are calling it Stage3:  T3c, N1, M0.    He is to start radiation and then interferon but there have been many delays.  A node on one lung was questionable and after being bounced around from place to place and undergoing one test after another (CT's, MRI's, PetScan, Lung Biopsy and so on) it has been determined that he also has a primary lung cancer, non small cell squamous.  Once that is removed, they will begin radiation for the melanoma on the nose and neck.  The surgery isn't scheduled until August 23.  The radiologist says he will see my husband 2 weeks post surgery to begin treatment. All agree that the lung needs to be taken care of first.  I am scared out of my mind over the delay but the doctors will not do radiation until the lung nodule comes out (expected to have only part of the lobe removed with no further treatment necessary for the lung).  It's not as though nobody has been seeing my husband in all this time.  We have been seeing someone or having tests done every week somewhere since this began, with the exception of one or two nonconsecutive weeks.  All test results, scans and reports have been forwarded to his melanoma specialist at the Hillman Cancer Center and he is aware of everything.  What do you think of all this?  My husband was scheduled to have the lung surgery on August 13 but of all things, he called today and had it changed to August 23 so he could spend more time with our son before he leaves for college and attend his nieces wedding before the surgery.  Do you think that the ten day delay will matter after all of this time?  I'm at my wits end with all of this, and now with him for postponing the surgery after we were finally able to get a date.  he has been given a 50/50 chance on the outcome for the melanoma.

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Minnesota's picture
Replies 27
Last reply 7/29/2012 - 10:00pm

I am newly diagnosed from an excision biopsy, and the only information I have is from a phone call yesterday. I meet with a surgeon next week who is going to do the sentinel lymph node biopsy.

All I know is that I have SSM, it was 1.45 mm?, and had a mitotic rate of 5. 

I got the impression from the doctor's phone call that 5 was a bad number.

I am very scared, if someone could give me even a sentence of positive news, I would really appreciate it. Thanks.

Persistence (sometimes) Prevails When All Else Fails

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Anonymous's picture
Anonymous
Replies 7
Last reply 7/29/2012 - 7:48pm
Replies by: Angela C, Anonymous

Angela,

How are you doing since your IL-12 treatment at NIH. I hope your scans showed that the treatment is working.

Wishing you  the BEST & NED status.

Mary

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Vega0624's picture
Replies 4
Last reply 7/29/2012 - 8:58am
Replies by: Gene_S, Anonymous, deardad, Harry in Fair Oaks

My father was first diagnosed with melanoma cancer back in 08. It was found early and removed. Earlier this month, my father went to the hospital with pneumonia. The doctors had found that melanoma had actually spread, and found bits of it in his right lung. During this week, the doctors discovered both lungs mets (the right one being worse), liver mets, brain mets (one small tumor and just recently today, 2 more). No word yet as to whether he'll undergo radiation therapy.

My father is 64, but is incredibly healthy for his age. He is very fragile at the moment though since he recently had a bronchoscopy to treat the meta in his lung. He also has had a wounded leg for the last 50 years which is potentially infected. It may be the cause of high white blood cells in his system, but has still lived a normal life with it.

I've done research on metastasis melanoma and have found an average range of 2-8 months. I have past family members that were outliers of that statistic. My grandmother was given 3 months and ended up living for 4 more years and she too had melanoma. My aunt was given 6 months but ended up living 11 years and she had throat cancer. However, neither of them had brain metastasis.

The doctors won't tell us a timeline because they aren't sure themselves, but I need to know. I am currently attending UC Irvine and classes are starting the middle of September. It is about 2 hours from home so I won't be going back often. I have come to accept that in his condition, he doesn't have long so I just want to prepare myself. I don't want to receive a phone call from my family one day in class, or during a test, or in the library, but when it does happen, I just want to be ready. Has anyone had a similar experience like this, or know an estimated timeline?

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KMT2003's picture
Replies 13
Last reply 7/28/2012 - 6:42pm
Replies by: fdess056, King, KMT2003, triciad, Anonymous, Nell, Gene_S

I was dx with melanoma in 2007 when a mole was removed from the back of my neck stage unknown. In 6/2012 was dx as stage 3 when a swollen lymph node was removed and a lymph node dissection was also done to remove 12 other nodes which were all negative. I am being seen at Moffitt in Tampa while finishing up 20 treatments of radiation locally. My next step is the interferon/ipilimumab clinical trial at Moffitt in August. Anyone out there going to Moffitt or used either drug to tell their experiences??? I'm really worried about the side effects since I will be going back to work as a school teacher in August when I start my trial.

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Angela C's picture
Replies 3
Last reply 7/28/2012 - 4:18pm
Replies by: tammy4102, LynnLuc

Hello.

I have a tumor behind my pancreas and we are discussing having it removed via surgery, along with the tumor in my adrenal gland. I heard from my oncologist today and after his discussion with the surgeon, they believe that a whipple procedure would be needed. They would have to remove part of the head of the pancreas to be able to reach the tumor. So, part of the pancreas would be removed, there is a possibility of some of the stomach having to be removed as well. They also have to take part of the duodenum and then change the path that the pancreatic juices take.

I don't have a complete undersanding of the procedure just yet, but the doctor said it's a major procedure with some possible long term side effects, like a change in eating habits if they have to take part of the stomach. It also sounds like there is a higher level of risk than any other surgery I've had in the past and a higher risk of not making it through this surgery. Part of the reason for this is that these lymph nodes (tumor) are right next to a major blood supply and the adrenal tumor is also right next to the vena cava. So, there is a fair amount of risk with this surgery.

It all sounds very scary. I have a consult at NIH next Thursday to talk about getting into the TIL trial. So, if that is the case, this surgery would be done there. I would imagine they are very talented doctors and probably some of the best that I could have performing a surgery like this. I've done IL-2, MDX-1106 and Yervoy. So, I think TIL is about the only treatment option besides surgery available for me.

Just wondered if any of you have had a whipple procedure?

Thanks!

~Angela

Be kind, for everyone is fighting a great battle. -Plato

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LynnLuc's picture
Replies 7
Last reply 7/27/2012 - 6:05pm

HI! Just got off the phone with Linda H. She was released. She is going to be on the Dabrafenib trial. She will get scans again tomorrow. She is decreasing the steroids which is a requirement. They found she has diabetes due to the steroid use and is on insulin...this is probably temporary , but for now its something she has to go thru. The two old small mets bled, probably because her blood pressure was high...the other two mets are small. If she needs more surgery or radiation she can still get it. They are bringing in a brand new CT scan specifically for the Dabrafenib trial and she will need to have that scan used on her from day one. That should be installed no later than 3 weeks. She sounds good, some hesitation in forming words, but she is doing much better. She still has difficulty typing and finding words. Difficulty reading written words... I just wanted to share and support her! Thanks, Lynn

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then Thorocotomy...now "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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Nell's picture
Replies 4
Last reply 7/27/2012 - 4:45pm

I have just had surgery for my 3rd local reoccurance....in rt. axilla.  Oncologist says radiation is not very effective....radiation oncologist says if it is truly localized, PERHAPS it can deter spread....Truly don't know what to do.  Just had negative brain MRI and 2 Cat scans--abdomen and chest---last PET was January.  Radiation oncologist says a new PET is needed..and if it is clear, radiation is indicated. My oncologist didn't order another PET....I am 65...I understand Sloan Kettering doesn't even offer interferon anymore, and nothing else is available for stage III....Anyone have experience with radiation for Stage III...Would PET scan offer more info that my recent tests didn't?   Thank you.

One voice can make a song; one life can change the world.

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deardad's picture
Replies 5
Last reply 7/27/2012 - 1:51pm

in sydney for gammaknife only to be told there are 40 new lesions in his brain. We are still here waiting to go home tomorrow. So devastating...........dad also has the flu and ended up in hospital on oxygen on our first night here. Everythings down hill from now and i feel like im just living a nightmare. Poor dad i cant imagine how he's coping. Thanks for hearing my winge. Nahmi from melbourne

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ACTION! Help Save the Life of Darcy Doherty, Father of Three Children to get immunotherapy drug Anti-PD-1 (BMS-936558)  for melanoma .

A Cry for HELP!!!

Please write to Dr. Elliot Sigal at Bristol Myer Squib

Elliott.Sigal@bms.com

Dr. Sigal is the Director of Research at BMS.

Please send a note to Dr. Sigal requesting that BMS open compassionate use for Mr. Doherty. I know it is a long shot/ Hail Mary Pass but, base on my research, this drug with the combination of IL-2 may be able to beat the odds.

Bristol Myer Squib says "At Bristol-Myers Squibb, we are firmly focused on our Mission to discover, develop and deliver innovative medicines that help patients prevail over serious diseases."

Is this all lip service? Let see if BMS puts their money where their mouth is and grant this compassionate care use for this derserving family. Doherty with his clinal trial of Yervoy (Anti-CTLA-4 therapy) helped get the drug FDA approved through his survival data. The least Bristol could do is to grant the dying man compassionate use of the next generation drug called Anti-PD-1, (BMS-936558)

Bristol Myer Squib needs to show some compassion.

It is their ETHICAL Responsibility.

“It is not the strongest of the species that survives, nor the most intelligent, but the one most responsive to change.”

~Charles Darwin~

 Take Care,

Jimmy B

 

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himynameiskevin's picture
Replies 10
Last reply 7/27/2012 - 12:35pm

I talked to the radiation oncologist this morning, the decision to stay on Zelboraf until we know for certain what's going on inside my body was made.

A "detailed" MRI has been ordered for next week to give a clearer picture to show how many/much of the tumors in the brain are new, active and growing and which, if any are just necrosis.

A PETCT has also been ordered for next week to show the status of my body, and give insight to whether these news ones in my head are being seeded by something in my body or were there before I started Zelboraf but too small to see. The scan will also show if Zelboraf is even still working.

Depending on the scans, SRS or WBR will take place regardless, and the decision to stay on Zelboraf or trying IL-2 again in the future if all goes well will be made.

So now I just wait for scans.

Until then, thank you all for the continuous thoughts and support. :)

-Kevin

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Liz C's picture
Replies 0

After 9 years NED, I have a new primary. Here we go again.

Stay vigilant!

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Liz C's picture
Replies 0

After 9 years NED, I have a new primary. Here we go again.

Stay vigilant!

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Janner's picture
Replies 16
Last reply 7/27/2012 - 11:21am
Replies by: Anonymous, Janner, Linny, triciad, akls, washoegal, AllyNTAus, davekarrie

Just curious for those of you who've had an axillary LND, what was your pain like following the procedure?  Narcotics?  How long?  Recovery time?  Inconvenience level?

I have an 87 y.o. father who has melanoma in the right axillary lymph nodes.  He had one node cherry picked maybe 8 months ago, but now others are growing.  It's his cane arm and I'm worried about pain, lymphedema, and compromised quality of life.  He has experienced severe personality changes while on narcotics (although he doesn't believe his family when we say that).  He has limited mobility and limited tolerance for being inconvenienced.  I'm not sure how well he'd do with stripping drains.  We have an appointment tomorrow with a surgical oncologist that originally suggested the LND which we refused as only one node was enlarged at that time.  I'm trying to balance quality of life with keeping things in check.  My father has 3 other types of cancer but all are stable except for this melanoma.  I understand where this can all go, but leaving this alone is most likely the option my father will choose.  I'm just trying to consider all options from nothing to minimally invasive to a complete LND.  My Dad will look to me for guidance on this one and I want to feel more comfortable than I do right now with my choice.  Any input would be appreciated.

Janner

http://www.MelanomaResources.info

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