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.

Expand/ Collapse Topic
 
Replies By
View Topic
Lisa13's picture
Replies 6
Last reply 3/22/2011 - 9:46pm

Yesterday I received my pathology report from the surgery I had a month ago.  I have a nodular melanoma 22MM deep, ulcerated with 1 lymph node out of 19 positive for melanoma. That being said, I'm relieved that only 1 lymph node was involved, but now, I'm VERY concerned with how deep it is.  My mitotic value is surprisingly low (1) which is rare for a deep tumour.  I'm also currently NED as per PET scan results.

Anyway, is there anyone out there whose had a deep tumour or nodular melanoma with similar characteristics?  Everything I read about this melanoma is BAD and I know the prognosis is BAD, so I'm really hoping there is someone out there who has beaten the statistics.   I'm also wondering if it's do deep, does it even matter how many lymph nodes are involved. 

I'm now deciding between Interferon or hoping this Ipilumumab gets approved so I can get get myself over to the U.S. for treatment.  Any advice, any help?  I've got a 16 month old daughter, so my goal is to keep this away for as long as possible.

P.S  I must thank my dermatologist who LAST September told me it was a sebaceous cyst!

 

Thanks!

Lisa

Many impossible things have been accomplished for those who refuse to quit

Login or register to post replies.

Rebecca and Bob's picture
Replies 2
Last reply 3/22/2011 - 2:57pm
Replies by: Anonymous, lhaley

Hi all,

The anxiety always gets tough the week before going in and the past two days for me have been partically hard. It doesn't help that I ran out of sleep aid. I keep wondering if it will ever get easier. This will be 20 months since my husbands last surgery and we are just praying he is still NED.

Thinking of everyone here always.

 

Rebecca

Believe

Login or register to post replies.

Charlie S's picture
Replies 31
Last reply 3/27/2011 - 9:48pm

Every time I have talked, called or seen  Amy B, it has always been "Amy B, how you be sweet Pea ?"" because she has always been the daughter I never had

.She always gave me either a sterling smile, upbeat optimistic look forward or shared a secret darkness that goes unsaid

No, Amy is not dead; but after speaking with Dennis on the phone miinutes ago, Amy has done every thing she can and will do what is best for her and her family.

 The possible trials are all out the window.....................(editorial)..after, I might add that they gave her hope, but full well knew her medical history in advance,  and after weeks , turned her down because of her medical history (wtf is UP with that?)

I told Dennis, and I meant it, that he has balls of steel to keep it all together right now.

He has made arrangements with Hospice so that Amy can be, as she is now, at home and as comfortable as possible.

Please keep Amy, Dennis and all of their family in your thoughts as they traverse the hills, mountains and valleys while they all reach and cling  for one more sunrise and sunset....................no matter how difficult it may be.

annnnnnnnnnnnnnnnnnnnnnd, AMY B..............how you be be sweet Pea??????

smoch

Charlie S

Login or register to post replies.

MaryMary73's picture
Replies 16
Last reply 3/23/2011 - 1:51am

Tomorrow, I am seeing my dermatologist. This is my 1st appointment post diagnosis.

This evening, I ask my husband to unhook my bra because my hands were a bit dirty (I was cooking). I tell him "while you're at it, tell me if you see anything funny". I always ask him to do that. He usually checks around my WLE scar. So as he is scanning my back, he tells me "there's a weird looking mole here and I think it may be new". He took a picture of it. It is light brown, round, but one side is just a shade lighter than the other side (if a line is drawn thru the middle). It is on my upper back, not too far from my shoulder blade. The WLE scar is in the lower middle of my back.

Holy smokes...here we go again. Thank goodness I'm seeing my derm tomorrow because in all honesty, I am having a total panic attack.

sad

The only real wisdom is knowing you know nothing -Socrates

Login or register to post replies.

olivia53's picture
Replies 5
Last reply 3/24/2011 - 10:33pm

My Mom had no idea there was a tiny black dot at the top of her head.  I only noticed it when I blew-dry her hair.  I brought it to the attention of her Derm. Mohs Surgeon two weeks ago.  Report came back melanoma.  My Mom has had 3 melanomas over 15+ years.  They were all in situ.  This one isn't.

The surgeon says it is 2.2mm deep, so she is going to do a wide and deep excision this week or next (about 2" all around).  Tomorrow I bring my Mom for blood tests and CT Scan of Abdomen, Brain, Chest, Throat, Lungs.  Oh Lord, why did I not do anything about this back in September when I first noticed it?

My Mom is 85.  Some people I'm sure will think, "Oh well, she's up there in age.  Has to go with something."  But my Mom looks, acts, feels like 65!  And I need her to have some happy years ahead--she's had a tough life with anxiety and depression (agoraphobia for years).

As I write this, I am shaking because the results of the tests won't be back for about 48 hours.

Has anyone had this experience (maybe where it did not metastisize)?  Everything I read on the Internet seems like we're doomed.

Thank you in advance.

Olivia

Login or register to post replies.

Jeff's Mom's picture
Replies 12
Last reply 3/24/2011 - 8:58pm

Good afternoon,

My 30 year old son was recently diagnosed with STAGE 3c malignant melanoma - you can read his story on my profile page.  He is now recovering from his second surgery and has been given two options for therapy before he starts radiation:  interferon or leukine.

Help!!  Any advice would be greatly appreciated.  What were your experiences like if you were treated with either of these two therapies?  What can he expect?  Thanks in advance.

 

Jeff's MOM

Login or register to post replies.

Bruce in NH's picture
Replies 5
Last reply 3/21/2011 - 6:26pm

Hi,

I haven't posted for a while but logged in this morning and saw the success Rocco has had with ipilimumab - fantastic! Last summer I completed the first round of ipi and my PET scan in November showed three small tumors as stable - good news! So I was disappointed when I had a follow-up PET scan in February, only to find out the chest wall tumor grew by 50% and a fourth tumor is growing in the same region - bummer! So my onc has restarted the ipi program for the second time. My second infusion is this Thursday. Fortunately I tolerate the side effects well as compared to IL2 and biochemo therapies in 2009. So it's wait and see again. The good news is that the chest wall tumors are easily operable as compared to the center chest and left lung tumors that still remain stable after 2+ years - yea! Hoping ipi knocks them all down this time!

My best wishes to all of you who continue to fight this disease. I feel very fortunate to have celebrated my 10th year of fighting melanoma back in October. So continue the fight with me and enjoy life as I do to the fullest!

Take care,

Bruce in NH

Life is a journey, not a destination. Enjoy every minute of it with family, friends, and with others who may be ill and fighting melanoma.

Login or register to post replies.

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!

Login or register to post replies.

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

Login or register to post replies.

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

Login or register to post replies.

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.

Login or register to post replies.

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

Login or register to post replies.

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

Login or register to post replies.

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

Login or register to post replies.

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

Login or register to post replies.

Pages