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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Anonymous's picture
Anonymous
Replies 7
Last reply 5/20/2011 - 10:11pm
Replies by: annabanna, lhaley

i went to the dermatologist Monday 5/8/11 and they called today and told me the biopsy they did came back melanoma. they are sending me to specialist in birmingham, al but it is going to be june 2nd before they can they get me in. i just wanted to know if this is normal or if this is to long to wait to see specialist. just don't know how i can take waiting this long to know something.

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Anonymous's picture
Anonymous
Replies 0

i went to the dermatologist Monday 5/8/11 and they called today and told me the biopsy they did came back melanoma. they are sending me to specialist in birmingham, al but it is going to be june 2nd before they can they get me in. i just wanted to know if this is normal or if this is to long to wait to see specialist. just don't know how i can take waiting this long to know something.

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annabanna's picture
Replies 7
Last reply 5/14/2011 - 3:27pm

i went to the dermatologist Monday 5/8/11 and they called today and told me the biopsy they did came back melanoma. they are sending me to specialist in birmingham, al but it is going to be june 2nd before they can they get me in. i just wanted to know if this is normal or if this is to long to wait to see specialist. just don't know how i can take waiting this long to know something.

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annabanna's picture
Replies 0

i went to the dermatologist Monday 5/8/11 and they called today and told me the biopsy they did came back melanoma. they are sending me to specialist in birmingham, al but it is going to be june 2nd before they can they get me in. i just wanted to know if this is normal or if this is to long to wait to see specialist. just don't know how i can take waiting this long to know something.

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kjshaner444's picture
Replies 4
Last reply 5/16/2011 - 5:48pm

I have Melanoma. I begin Interferon on Monday. Thank you.

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carol b's picture
Replies 11
Last reply 5/16/2011 - 3:24am

Had my pet scan last wed. I got my results this week... Four of my tumors are completely gone. No sign that they were ever there.. Prayers are working, Thanks for all of them.. The black monster under my arm grew about 3 more cm. But thats ok.. I got back to Vandy next week on the 18th to do another round of IL2. Pray that i can take at least 10 to 12 bags. It did shrink it over half its size last time but me and the doc got way to confident and set the IL2 appt to far apart and it allowed mel to grow back and increase in size. I will get 7 days to recoup after the first round and go back on June 1 to do another round. The treatments are horrible, those of you that have taken it know. I need as much of this med in my body as i can handle and i know i cant do it without prayers. But when it shrinks it this time my surgeon is gonna take it out and hit me with another round of IL2 and make me NED.. I will become one of the miracles.. In Dec i was told i had 9 months to live, 5 of those r gone now and i know im gonna beat the death sentence i was given, well mel ain't gonna get me anyway,, something else could happen but it wont be mel..I believe with all my heart that the prayers i have received have helped me get this far in my melanoma walk. I read so many post on here and feel ashamed to report anything good when so many here are suffering. I've learned how to pray and to believe from you all. I have learned too be strong and brave. I have learned to love people i don't even know. I thank you all from the depths of my soul. I will be sending up prayers for you all everyday. You all are special to me even if i don't post it all the time. I just get to emotional and cant, but you are always in my thoughts and in my prayers..May God Bless You All With His Grace..

Believe all thing are possible, believe faith can move mountains, believe in the healing power of prayer and never ever give up on your dreams

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MMarieMetcalfe's picture
Replies 5
Last reply 5/16/2011 - 5:51pm

Does anyone know of any doctors in Delaware that specialize in melanoma that they would recommend?

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jimjoeb's picture
Replies 5
Last reply 5/13/2011 - 6:02pm
Replies by: MMarieMetcalfe, Anonymous, jimjoeb

I received the first pathology report following my WLE and SLNB of three lymph nodes. The first report says that the provisional diagnositc all is negative. Yeah!!

However, it also says that results of immunostains and step sections pending. I expect those results in a few days. Am I right to understand that there is still a possibility of something showing up or they wouldn't bother with the immunostains and step sections?

Be Not Afraid-God is with you always Stage IIIa

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thebunches's picture
Replies 1
Last reply 5/13/2011 - 6:07pm
Replies by: washoegal

My husband had his first WLE and SNB surgery (combined) this past Tuesday. The WLE incision is MASSIVE...it looks to be approximately 9-10 inches across his abdomen, in an "S" shape. The SNB is about 3 inches and is a "hernia" incision, whatever that means.

My hubby is a professional bodybuilder...I'm wondering if he will ever be able to go back and do what he loves, and actually maybe be a contender even with a huge scar in plain sight.

Now we wait the 14 days until the biopsy results come in... supposedly they are being read by the "best in the world" person at Moffitt in Tampa. Oh this wait is going to kill us. Any suggestions on how to get through waiting to find out "how bad the cancer is"? He has never been a patient man.

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dgkendall's picture
Replies 3
Last reply 5/13/2011 - 8:43pm
Replies by: dgkendall, W.

My wife started E7080 on May 2nd and seems to be developing more adverse symptoms on a daily basis. Considering stopping. Has severe stomach pain, dizzy, can't eat much, very tired and sleeps a lot, loosing weight. Have others experienced this and what did you do?

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Kellyg8's picture
Replies 5
Last reply 2/4/2014 - 4:37pm

My family has been down the "road of melanoma".  I've so often come to this board looking for hope and other times information...you all have provided both so many times.  I rarely post, but often read.  Thank you all for help.

My dad, Ted lost his battle with Melanoma on March 14th...he fought for 3 1/2 years and endured interferon, IL2, Ipi, numerous surgeries, gamma knife and cyber knife, 2 craniotomies, numerous seizures, and in the last 8 months of his life, a brain bleed that left him with paralysis and aphasia/loss of speech.  He stunned his physicians as he continued to fight.  In the past year, he fought to walk my sister down the isle at her wedding, celebrate his 60th birthday, his 35th wedding anniversary, and be the first person to hold my new baby girl, his first grandchild. 

For those still fighting this terrible disease personally or with a loved one, please don't let this post bring you down.  My father lived a beautiful life, fought the good fight, and is now at peace at the beach in Cape Cod.  He had to leave us, but not before teaching us SO much about life, love, and the importance of family.  Although his time was too short, he lived and loved more in 60 years than most do in a full lifetime.

My main reason for posting is that I want to give back what so many have given me. My dad went through SO much.  PLEASE feel free to contact me.  This journey has taught us so much...about treatment options, coping, insurance companies, rehab facilities, home care, hospice, caregiving....I want to be able to help others with so many of the questions we had throughout this journey.

All I can say is some days I didn't know how much more he or our family could endure...I felt so helpless, exhausted, and scared.  He's been gone 2 months and looking back, it now just seems like a bad dream.  I miss him dearly but know he's at peace.

Sending support and strenght to all of you...

Kelly

A link to  Ted's life tribute:

http://www.wallingfordfh.com/sitemaker/sites/wallin0/obit.cgi?user=333239GoodyearJr

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shellebrownies's picture
Replies 28
Last reply 6/25/2011 - 6:36am

Morning all,

I am becoming increasingly frustrated with my husband's care under Dr. Ibrahim. I am hoping that you all will be able to put this into perspective for me and tell me whether I am having unreasonable expectations or not and whether perhaps I should check into moving my husband's case to Dr. Hodi. I know at least one person here has him as their doctor and has given him a glowing review.

I would just like some feedback whether I am being unreasonable in my expectations or if I have some justification in my concern.

We were able to get in to see Dr. Ibrahim at DF pretty quickly (I thought)...less than 2 weeks after starting the process (we had to get all his med records and test results forwarded as well as notes from all the doctor's he'd seen in the 2 years since Don's original diagnosis). From that point on is where my dissatisfaction begins.

At Don's first appointment with Dr. I, she tells him that his original tumor area had been extracapsular and had infected the surrounding tissue, so his chance of reoccurence was high risk. Then she tells him that she was concerned about how quickly the tumor had grown under his arm and was worried it might mean his melanoma was an aggressive kind. 

After that speech, she said she wanted to do a second PET Scan (he'd had one done the week before which showed cancer in more lymph nodes in his shoulder and an area of concern on his left neck) to check for that trouble area again. She wanted 3 weeks between the scans, even after all she said about his high risk and aggressiveness of the mel.

I was not happy about this and questioned her on it, but she said she wanted to give Don's surgical site more of a chance to heal so it wouldn't give false positives on the PET. At that point, they were going to contact the hospital the did Don's lypmhectomy to get a sample to test for BRAF.

We waited the additional time (3 weeks between scans) and had his PET redone on th 29th. Dr. I had told us that if further hot spots turned up on the new PET, he would need CT and/or MRI to confirm. So, not wanting to wait a week until the 6th to get our answers, I called Dr. I that Monday afternoon. I wanted to know whether he was going to need the additional scans, because we didn't want to wait until the 6th to find out and have to wait even LONGER for more tests. If he needed them, we wanted to get them scheduled right away. Dr. Ibrahim said that no further testing was needed at that time. This, of course, gave us the impression that the PET came back with good results.

Yet, when we got to the appointment on the 6th, she tells us that the cancer had spread to several areas away from the original site and he was going to need more tests (CT and MRI). This was the EXACT reason I had called her on Monday! I was bullshit! Granted, they got him in that same day to get both tests done, but we could have had these tests done and she could have had THOSE results that Friday as well, you know?

Then they tell me that the BRAF testing wasn't complete yet because our hospital hadn't yet sent the specimen. I was on the phone with the doctor that Monday...why the heck didn't she mention it then when I could have taken care of it? Or called after the first week and they hadn't got it sent yet for that matter? I literally got on the phone with the lab at the hospital while we were IN HER WAITING ROOM and arranged to have the specimen overnighted to DF. 

Dr. Ibrahim said she was surprised at the amount of change in Don's results in only 3 weeks (new scan showed bone lesions scattered on both hips, left leg bone, left arm bone, one left rib and both bones in the sternum, as well as tumors in both liver lobes), yet when I asked her if it was unusual she said no. I don't feel like we are getting straight answers from her. This is one area where I'm hoping some of you could give me feedback. That amount of change seemed to confirm the Dr's thought that this mel could be an aggressive one. Yet, I'm not seeing any sense of urgency in dealing with Don's case.

I called Dr. I's line on Monday, because I wanted the results of the MRI/CT scans. Her fellow called back and said they don't like to give out results over the phone because they'd prefer to do it in person in case it's bad news. I told him I didn't care if it was bad news so much as it would affect course of treatment right away: reason being that if he had brain mets, he wouldn't qualify for the trials and they could just start Yervoy right away. Reluctantly, he told me that the MRI was clean. I asked him if the tissue had arrived from our old hospital. He said he wasn't sure. I asked him to call me right away if it wasn't there yet, because it had been promised to arrive on Saturday.

I was told that I would get a call from radiology on Monday for Don to be scheduled for a liver biopsy to confirm the Stage IV diagnosis. No one called, so I had to call Monday afternoon to follow up (their biopsy procedures appear to be done at Brigham and Women's Hospital next door) and get it scheduled. That department hadn't even gotten the paperwork from the doctors for the procedure yet, which was why they hadn't called. I got him in for Wednesday (2 days ago). 

When we got there for the biopsy, we were told they were taking several samples, one of which was to test for the BRAF mutation. Is it standard that they would test every tumor for the same mutation? Or is something fishy here? I mean, if the tissue sample they received was not viable for the test, I would have liked to have been informed of that, yet, they told us nothing.

Now, of course, I would like to be informed of the test results as soon as they get them, but that appears to not be this doctor's policy. Don's next appointment is the 20th, which is 3 weeks from the date of his last PET scan. If his mel spread as much as it did in the prior 3 weeks, I can only imagine what is happening in this additional 3 weeks. (It would not at all surprise me to learn that the cancer has spread to his lungs, for example) But I still don't feel as if there is any sense of urgency attached to his case. 

I placed a call to the call line yesterday morning and asked to be called back because I had questions: we wanted to know why they needed the additional BRAF test done as well as find out how soon Don might be able to start treatment after his appointment on the 20th. It will be 7 weeks since the surgery by that time...7 weeks of absolutely no treatment with the melanoma running wild in Don's system.

When I didn't get a call back by 3:30pm, I called again. The nurse taking the message said she'd try to get someone to call back that day, but usually calls that came in that late wouldn't be answered until the next day.

Am I being unreasonable to expect to hear results as soon as the are available so they can be acted upon more swiftly? I don't feel like Don and I are being treated as partners in his health plans. I wish that they could have given him advice on excercise and diet and anything at all that he could be doing in the interim to try to get his body's immune system to try to fight off the cancer better while we were waiting for treatment. I realize Don is not their only patient, but I am not okay with the apparent lack of urgency.

Please let me know if you think I have unreasonable expectations and if not, can anyone give me feedback on Dr. Hodi from DF? I know at least a couple of boardies have him as their doctor, and I'd like to know if his approach would more mesh with ours. Thanks!

Michelle, wife of Don, Stage IV

Gonna stand my ground, won't get turned around, And I'll keep this world from draggin' me down; Gonna stand my ground and I won't back down. ~Tom Petty

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Carol Taylor's picture
Replies 14
Last reply 5/17/2011 - 3:02am

Everyone, this is an SOS for Eric. Jill just posted on the facebook page she has about what's going on with him. It's not good. I'm not going into detail, but please trust me on this. They both need your support and prayers like never before.  Bombard the throne of heaven.

Lord, in Your mercy, be merciful now! Amen.

Life's short. Eat dessert first. http://letsgivethanks.blogspot.com/2011/03/let-sun-shine.html http://www.facebook.com/MelanomaPrayerCenter http://www.facebook.com/melanomagriefchapel (This blog post contains links to my story).

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Leigh's picture
Replies 5
Last reply 5/13/2011 - 11:43am

Hi,

I was diagnosed in December last year at the beginning of a southern hemisphere summer.  A week before we had decided to move to Queensland - melanoma capital of the world.  We used to live there for a couple of years and have some (very) extended family there.  We were really looking forward to this move as it was hopefully going to bridge a gap between our families and my husband is extremely keen to move back to his homeland.  But after the diagnosis, a number of scares, and a summer spent avoiding the outside during the daytime, we decided we should not go.  We are now having second thoughts as we enter a cool winter and we were looking forward to finding some middle ground for us both in terms of where we live and of course they have a great (summery) lifestyle.  (I would actually be happy staying put but we are living in my hometown and although my husband says he is happy here I believe he hasn't settled and wants to move back).

I just dont know if this would be a completely ridiculous move.  On the one hand I think - are you crazy moving to melanoma central, on the other I think well at least I know I should protect myself and how to do this.  My kids are fair too.  Is it possible to live in a warmer climate with melanoma?  (especially with kids who are still only 3y and a baby and will obviously be running around and not willing to wear too much clothing).

I'm not sure if melanoma is caused by burns in childhood primarily or is it actually the amount of UV exposure that plays an important part (obviously I would be absolutely certain to avoid any burns in the girls).

Thanks for your thoughts if you have got this far, I'm not sure if this is a great place to write this but I cant think where else to get advice/opinions.

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dafad777's picture
Replies 3
Last reply 5/18/2011 - 1:16am
Replies by: betsy, Anonymous, washoegal

hi.had a question is malignant blue nevus the same as melanoma.my daughter had tumor removed six months ago.the other day she had thyroid ultrasound done and they decided to check her lymph nodes.the only information i got was small lymph nodes noted on report.I am guessing thats good because if they were inlarged i should be concerned?they so far have treated it the same as far as surgery and wle.thank you any information would be apprecated

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