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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Mapes84's picture
Replies 4
Last reply 3/21/2011 - 10:54am

Hello all! I was hoping to gain some insight as to why my derm may have decided to perform a shave biopsy on my last appointment. Her decision to do this is causing me some anxiety!

A little history: I was diagnosed with a melanoma in situ in 2009 at the age of 25. I had a WLE (no SLNB), and haven't had any problems since. I have been attending my check ups twice yearly, and I have had two other spots biopsied since the melanoma. My derm performed punch biopsies for both of these. One of them came back atypical, but they were both benign.

I had a check up on Thursday, and I showed my dr. a spot that has had me particularly concerned. I noticed one day that it had a strange appearance (irregular border, two shades of brown) and made a mental note to "watch it", as I had a check up approaching within the month. Almost overnight, the spot (which had been completely flat) started to feel elevated. A few days later, it started scabbing. Eek.

Anyway, predictably, she said she would do a biopsy "to be on the safe side". As usual, I turned and looked the other direction while she performed the biopsy because that stuff turns my stomach :p . Suddenly, I felt her putting a bandage on, and I realized that it was over way too quickly. I asked her if she had performed a shave biopsy this time, and she stated that she had. I asked her (politely) why, since we have never done this before. She stated, "I have my reasons" (?!), then mumbled something about catching it really early if it was anything bad.

I don't claim to be a doctor, and I don't know a ton about this stuff, but I was under the impression that shave biopsies are a big no-no if melanoma is even remotely suspected. Was this done out of laziness? I don't understand. Is it time to look for a new dr.?

I am still awaiting biopsy results, but my next question is this: I am aware that a shave biopsy can interfere with staging if melanoma is present. Can a shave biopsy result in a false-negative? This is really bugging me.

Thank you in advance!

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DebC's picture
Replies 12
Last reply 4/29/2011 - 1:07pm

 

This is my first time posting on the bulletin board.  I have read many of your conversations over the past 3 months and so have already benefited from your knowledge, guidance, compassion, and spirit.  I am very grateful for your generosity and your support already.  I am finally posting today with some questions and concerns about getting through interferon but here’s a bit of background first.

 

I am the wife of a very dear 60-year old man who was diagnosed with melanoma in December 2010.  He had surgery for a very large lesion on his back on December 10th that his primary doc had, unfortunately dismissed 2 months before.  His cancer has been staged as IIC; the thickness of the tumor was 32 millimeters (yes, you read that correctly) and it was ulcerated.  We were greatly relieved that he had clear PET and brain scans but they were unable to do a SNLB because of the size of the surgical wound on his back.   After sufficient recovery from the initial surgery he had a skin graft in January to complete the healing.  Our medical oncologist here in Maine referred us to the melanoma clinic at Mass General where we saw Dr. Lawrence and his team.  As you all might imagine, the recommendation was a yearlong course of interferon, given the ‘worrisome’ nature of his tumor.

He completed the 4-week, 20-day marathon a week ago Friday at the Alfond Cancer Center here in Maine and, as so many of you know, the fatigue was beyond what we could ever have imagined.  After the second week there was no ‘bounce back’ over the weekend and he essentially stopped eating; he had no appetite and lost his taste for food.  It was a very hard month, to say the least but we’ve found this past week to be almost more discouraging and disconcerting.  The exhaustion has continued (he started the 3x/week injections last Monday); he has had no appreciable gain in energy until perhaps today.  His appetite has returned a bit but, for a man who loves all sorts of food, he is being very careful in what he tries to eat.  He wants to return to work – an administrative job – but is wondering how he’ll ever get through a day – or even half a day.  We have felt confident about the decision to go ahead with the interferon treatment but the year ahead looks very bleak at the moment.

So, we would appreciate any advice on how to get through the long haul of interferon – what to expect and what has helped you or your loved ones with the fatigue, appetite issues, and anything else.  We are also concerned about what to watch for as the weeks and months go on – as we are ever worried about where this nasty disease might be lurking.

Thank you so much.

Deb C

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Vermont_Donna's picture
Replies 8
Last reply 4/20/2011 - 7:36pm
Replies by: Vermont_Donna, Barb Kotti, Anonymous, Ranisa

Hi everyone,

There is an article on Good Housekeeping about a woman diagnosed with stage 3 and then stage 4 melanoma and her journey with treatments.

People may find it interesting; it seems to have covered some of the newer treatments...Ipi, PLX4032. She was treated was tremilimumab....guess I am not sure what that is.....but I will research that.

Enjoy!

Vermont_Donna, stage 3a

currently stable (NED) after 4 infusions of Ipi, round two to start May 11

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RMcLegal's picture
Replies 13
Last reply 9/8/2011 - 6:47pm
Replies by: MikeWI, RMcLegal, Cynthia C

A member of this discussion board community inspired me to write some new lyrics and post a YouTube video link for the Bee Gees' "Stayin' Alive".  Put on your disco shoes and come dance with us at www.hotelmelanoma.blogspot.com.  Best wishes to all.

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killmel's picture
Replies 4
Last reply 3/25/2011 - 3:09pm
Replies by: ValinMtl, EricNJill, Anonymous

Hi All,

 

I just got back toMPIP after a long trip. I have gone back & read old post but could not find out anything on Amy Busby & Jill n Eric in Ohio.

Hoping that they are all doing well.

Thanks

Wendy

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kd4cht's picture
Replies 8
Last reply 3/28/2011 - 6:22pm

I was diagnosed with a melanoma skin cancer on my abdomin back in May 2006.  I had a kidney transplant in April 1999.  When Dr.  Ollilla did surgery to remove the melanoma and 1 cm of skin around the melanoma he also removed a lympthnode.  The patholegist report showed that he got all of the melanoma and the lympthnode was negative.  Now in December 2010 my kidney doctor(Dr. Dunmire) noticed that I might be anemic.  So he did a blood test and sure enough I was very anemic.  He sent me home with stool sample cards and when I returned them they all 3 tested positive for blood in the stool.  I contacted my transplant coordinator and UNC Hospitals and she got me an appointment with the G.I. Clinic.  They examined me and set me up for an endoscopy and colonoscopy.  Those tests did not find any cancer.  At my follow up appointment I was told that the biopsies came back as normal.  So next they had me do a small bowel endoscopy.  That found something.  They had me admitted to the hospital.  They took X-rays, did a PET/CT scan, and another endosocpy.  The PET/CT scan showed a hotspot in my small intestine area.  The endosocpy did not find any cancer.  The G.I. doctors don't think they got biopsies of the right area.  So I get to have another colonoscopy, and they are going to try to get to the area from the colon to get biopsies.

The head of G.I. clinic said that melanoma could come back to the bowles, but it was rare.  After reading some on this web site I am starting to wonder how rare it is.

The doctors will not say one way or the other if it is cancer, but I have a feeling it is.  The weird thing is I have had no pain.  Just the anemia.  I imagine that I will have to have surgery on my small intestine to remove the tumor, but the doctors have not said much about that yet.

Has anyone had a similar experience?

 

Thanks,

 

Alan

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kim2712's picture
Replies 10
Last reply 3/25/2011 - 10:22am

My son Erik was diagnosed with stage 3 melanoma in 2004. He did one year of high dose Interferon.  He has done well since then. On March 7th his lung collapsed 100%. He had been having pain and shortness of breath a few days prior to this. They put a chest tube in from the top of his lung to drain fluid and try to keep lung inflated. After a week of this, a thoracic surgeon was called in and decided he needed surgery to put the larger drain tube in at the bottom of the lung. They did this Monday morning, the 14th. After 2 agonizing hours the surgeon met us in a private room and just said I'm sorry, it's bad. His right lung, pleural area, chest cavity and chest wall is full of malignant melanoma tumors, hundreds of them he said. Resection was not an option. We are heading to the Cleveland Clinic Tuesday and University Hospital in Cleveland on Wednesday to see the melanoma guru's at both places. We are in Toledo.

My question...is there realistically any hope?

Thank you from a terrified mom

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kim2712's picture
Replies 6
Last reply 3/25/2011 - 10:28am
Replies by: kim2712, Nancylee, Peter L, dian in spokane, Anonymous, jrami3

My son Erik was diagnosed with stage 3 melanoma in 2004. He did one year of high dose Interferon.  He has done well since then. On March 7th his lung collapsed 100%. He had been having pain and shortness of breath a few days prior to this. They put a chest tube in from the top of his lung to drain fluid and try to keep lung inflated. After a week of this, a thoracic surgeon was called in and decided he needed surgery to put the larger drain tube in at the bottom of the lung. They did this Monday morning, the 14th. After 2 agonizing hours the surgeon met us in a private room and just said I'm sorry, it's bad. His right lung, pleural area, chest cavity and chest wall is full of malignant melanoma tumors, hundreds of them he said. Resection was not an option. We are heading to the Cleveland Clinic Tuesday and University Hospital in Cleveland on Wednesday to see the melanoma guru's at both places. We are in Toledo.

My question...is there realistically any hope?

Thank you from a terrified mom

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The Roche study committee has decided to allow me to go back to the Brim -3 study after I finish with my WBR!  This is great news since the Braf was holding the chest tumors at bay.  I did progress to having 5 brain mets.  I have just finished with a third of the WBR and today I have woken up with more strong side effects, effecting my left side.  I slouch and trip.  Doc said the WBR would cause more swelling and the symptoms would increase for some time.  The steroids are drving me crazy with feeling like I've had WAY too much caffeine and hungry ALL the time! 

 

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killmel's picture
Replies 2
Last reply 3/19/2011 - 1:26am
Replies by: MaryD, lhaley

Hi Everyone,

I do not post much but I visit everyday to learn from you all.

I am posting today to be able to give back to all of you who have helped me learn so much.

I am  stage 3 and have scans regularly going back to January 2009. I always have my scans done at the same place so that the radiologist have copies of older scans for comparison.This week I had my scans and was scared out of my wits after reading the reports. To make a long story short, I have my very lucky to keep my recurrences in my leg. The radiologist who read my scans this week identied "new" areas in my lung & liver that  were suspicious & needed follow-up.

Frantic, I called  another radilogist who had read my scans in the past & ask his opinion of these 2 "NEW" area in my lung & liver. To my relief, this radiologist took the time & went back to my old scans in 2009 & was able to identify that these 2 areas of concern were on my scans back in 2009. The areas of concern in my lung & liver were the same & stable, and more than likely benign.

My lesson learned is not to panic . The radiologist who read my scans this week did not even bother to go back to look at older scans and compare. I would recommend everyone to try to get a second opinion before believing the worst. Also, it is a good idea to get the CD discs of your scans so that you can get a second opinion & have a record of your history ofscans.

Thanks for reading my post.Wishing you all a lifetime of NED!

Wendy

 

 

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gabsound's picture
Replies 2
Last reply 3/18/2011 - 9:43pm
Replies by: LynnLuc, lhaley

The results came back on my PET scan:

"There are extensive changes seen within the right groin and medial right thigh. Single area of increased hypermetabolic activity within the inferior portion of the right thigh incision where there is some thickening seen on the CT. The SUV is as high as 2.0. Suggest direct visualization and possible repeat biopsy and excision is suggested. There is low grade probable post surgcal activity within the right groin with no definite hypermetabolic lesions. The remainder of the PET findings demonstrate no evidence of distant metastatic disease."

My surgeon is the one that gave me the report and he said "that's why I don't do the PET scan this early". He thinks it's all related to the surgery and did not seem worried. I feel relieved, but know of course the scan will need to be repeated later to recheck that area. That part of my leg has been sore, but is less sore now than it was. Tomorrow makes 4 weeks from the date of my WLE and lymph node dissection.

I also saw on a consult report that my Physician friend had that dx is superficial spreading Clark's level IV. Breslows depth 2.35 mm with ulceration present. Regression absent. Lesion now T3bN1M0. Does this make me stage 3b? Assuming PET is really negative?

The PET scan was done 3 weeks post surgery. I still had one of my drains in. That came out yesterday :)  I'm wondering if anyone else had changes in region of surgery and did these resolve?

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bball's picture
Replies 3
Last reply 3/19/2011 - 9:35pm

anyone have any experiaence with mistletoe injectionsor hyperberic therapy , to improve immune system

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kbc123's picture
Replies 16
Last reply 3/20/2011 - 3:32pm

Finally going to NYU for my second opinion on my supposed 3A melanoma disease on Monday .  I had an appointment with Anna Pavlik, who I wanted to see because of all the good things I heard, I am now seeing Dr. Ott in her office.  Any feedback on this??

Its bad enough we have to go thru this, make the appointments in advance just to go see someone that may save your life, just to hear "sorry, something has come up."  I am disgusted, aggravated and stressed to the limit.

 

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Terra's picture
Replies 5
Last reply 3/24/2011 - 8:11pm

Hi, we are seeing our onc onMonday and wanted to discuss abalation for multiple liver mets (largest is 1.3 cm).  Not sure where this is done and if any of you have had experience with it. 

Please share. 

Lungs mets as well so we will need to look at something else ie ipi.

Thank-you for your input.

Terra

 

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dawn dion's picture
Replies 5
Last reply 3/21/2011 - 1:53am

So today was a little frustrating.   Finally had some side effects - wondered when they would show up :)  Anyway - not to bad - hip joints hurt a little, verry tired today.   I am a person that goes non-stop so when I have to slow down it is frustrating.  Also had a low grade fever about 100 - 101 took a couple of tylenol slept allll day - and now all seems to be right with the world.   Go back to Moffit tomorrow for EKG and visit.   So far so good.   I hope the others of you on the forum riding a the B-RAF train are doing as well.

I refuse to let this beat me. I WILL NOT LEAVE MY GIRLS! MELANOMA CAN BITE ME!

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