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 0

since this disease robs some very young people of their life, and there may be parents reading this forum I thought this article was useful

http://parenting.blogs.nytimes.com/2013/03/03/a-high-functioning-bereaved-parent/

 

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Posted several updates since my wife was diagnosed Dec. 7 2012. Her oncology staff is at Moffitt in Tampa Fl. She had 1 spot treated on brain with radiation and completed her round of IPI treatments 03/19/13. During the IPI treatment a tumor inflammed in the throat tonsil area causing swallowing and eating issues. It was decided to have the tumor removed as much as possible. That was removed on 04/09/13. Her follow up scans showed 6 small new spots on brain and several new spots around body/organs. There was very little shrinkage if any on original tumors. She started WBR  10 treatments on 04/26/13 and was prescribed Temador to take while WBR. During the past 4 to 5 weeks she was complaining about sever stomach pains which gas X and bentyl seemed to be helping.  while driving to our WBR appt. on 04/29 her stomach pain was sever enough to put her in tears. Right after her radiation she was admitted to Moffitt. The stomach scan showed intussusception caused by a tumor. On 4/30 the whole team  from radition, oncology,GI, social worker meet with us at our room to discuss our options. I knew with this many ppl coming in that someting was not going to be easy. The surgeon explained that the surgery for the intussusception would relieve her current problem but wanted us to relize that due to the amount of cancer that he couldnt fix everything. The doctors discussed with us that the surgery would limit the future systemic treatments until healed and even then the history of both surgery could stop her qualifiying. They started talking with us about quality of life and they feel her time now might be shortened. They gave us an option to do the surgery or return home and suffer through the pain and naussea until a trial would be available. It was also suggested as a plan to start meeting with Hospice so we are fimiliar with the caregivers there and how the programs there could help our family through all this no matter if we elect surgery now or not.  Within a 15 min talk my wife and i were floored. She is 35 yrs old and still going strong, working , walking, house keeping etc. I was thinking WTH just happended. Surgery , no surgery, hospice, shorten time.. how can you handle this all at once. We have always been determined to win. We choose to do the surgery so she could eat and not have the stomach pain. It was done within 4 hours of us approving. She is at Moffitt now in recover. We agreed to meet with Hospice once we get home to understand their program. I would think IPI is still in her system and will still help. she has continued the WBR and has 3 more treatments this week. We dont plan on sitting still. The oncology team said make a full recovery from this surgery which could take 30 days then they could review and determine if another systemic treatment could help. What treatement should we be looking at. How can things be to this degree? Scared and confussed...  

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Arlenellen's picture
Replies 11
Last reply 5/10/2013 - 12:27pm

My husband recently had a SLNB and a right cheek excision with plastic surgery. Although the results said there was no evidence of residual invasive melanoma on his cheek, it also states "residual melanoma in situ in a background of cicatrix. It then goes on to state, melanoma in situ measures0.4 cm in horizontal dimension and lies 0.4 cm from the nearest epidermal edge or resection. All surgical margins negative for melanoma.
The lymph node came back negative for melanoma. I am very confused. Can someone more experienced than I help me understand this? BTW the histologic type is nodual which I understand to be the fastest growing.

Thank you
Arlene

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My husband recently had a SLNB and a right cheek excision with plastic surgery. Although the results said there was no evidence of residual invasive melanoma on his cheek, it also states "residual melanoma in situ in a background of cicatrix. It then goes on to state, melanoma in situ measures0.4 cm in horizontal dimension and lies 0.4 cm from the nearest epidermal edge or resection. All surgical margins negative for melanoma.
The lymph node came back negative for melanoma. I am very confused. Can someone more experienced than I help me understand this? BTW the histologic type is nodual which I understand to be the fastest growing.

Thank you
Arlene

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BrianP's picture
Replies 6
Last reply 5/4/2013 - 4:54pm
Replies by: BrianP, Bubbles, kylez, Randy437

I'm traveling to Duke on Monday for surgery on Tuesday to remove a "melanoma like" growth in my small intestines (see "Blood in Stool" thread for details on my exciting rollercoaster ride the last few weeks).  I say "melanoma like" because the gastroenterologist only looked at the sight through a balloon endoscopy procedure.  He chose not to biopsy it because he did not want to mess with the site because it had clearly been bleeding and whether the biopsy came back as melanoma or not he felt it needed to be removed.  Good news is I've had petscans, CT scans, and multiple colonoscopies and endoscopies and it looks like this is the only spot.  Hopefully my surgery will confirm this and I'll be back to NED.  17 months ago when I was orginally classified as stage IIIB NED there weren't too many treatment options (observe, interferon, or IPI vs interferon trial).  I'm just now starting my research to formulate my plan of attack following the surgery.  Does anyone know of any trials for stage IV NED?

Thanks,

Brian

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Anonymous's picture
Anonymous
Replies 4
Last reply 5/6/2013 - 4:25pm
Replies by: flvermonter, hbecker, Janner

Hi, My husband was diagnosed with melanoma from a mole on his back.  He had it over 20 years, but had changed in February this year.  The pathology came back as melanoma.  Then Moffit removed the rest of the mole and 7 lymph nodes under the arm.  6 of the 7 were melanoma.  Then they did a pet scan and found a spot on his liver and his right lung.

He is having a ct scan of the liver this week, then the next day is the ct for the lung and a biopsy.  He has been diagnosed with stage iii, but if it is cancer in the lung or liver it will be stage iv.  He feels fine, no symptons, no weight loss, or pain anywhere.  He is 70 and had an aorta valve replaced 2 years ago.  he was fine with that.

 

It seems to take so long for each of the steps for testing.  Maybe that is how it is supposed to be, but we started this with the dermatoligist early march.  Once he has the tests next week, it will be another week before we know anything. 

 

I am being positive that the tests will be negative for cancer.  The dr mentioned he would go in and take out the other lymph nodes if it is not cancer in the organs.  if it is, they will do no surgery.  What kind of options for trials are available...anyone know?  Also, where he is 70 and not 40 I am afraid he would not qualify for many trials.

 

I am new to all this, as I told his doctor, we are educated people, but babies when it comes to cancer.

 

Thanks, for any help/advice

Hugs to all, patients and care givers.

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Hello to all - Tomorrow I will be walking in the 2013 Melanoma Walk in Dallas Texas for AIM.....Looking forward to it....Thanks to Catherine Murray and Kyle Clare for sponsoring me.  I will  be walking in memory of my Jim, for several other warriors who have passed on from this beast, Amy Busby, Will, Bruce Fowler, Nancy O'keefe's husband, and many more that I can't remember just this moment....Just wanted to say thanks to the 2 people from here that donated.  I appreciate it very much...

Take Care,

Sherron Clevenger, wife to Jim FOREVER

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Sherron's picture
Replies 4
Last reply 5/4/2013 - 1:51am

Hello to all - Tomorrow I will be walking in the 2013 Melanoma Walk in Dallas Texas for AIM.....Looking forward to it....Thanks to Catherine Murray and Kyle Clare for sponsoring me.  I will  be walking in memory of my Jim, for several other warriors who have passed on from this beast, Amy Busby, Will, Bruce Fowler, Nancy O'keefe's husband, and many more that I can't remember just this moment....Just wanted to say thanks to the 2 people from here that donated.  I appreciate it very much...

Take Care,

Sherron Clevenger, wife to Jim FOREVER

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mamabet's picture
Replies 2
Last reply 5/3/2013 - 12:40pm
Replies by: mamabet, Janner

I am having a new primary excised next Wednesday.  In preparation for seeing my surgeon again, I thought I would go get a copy of my pathology report so that I can ask him for any services I have not yet received.  Please tell me if I need anything my oncologist has missed.

Type:  Superficial Spreading Melanoma

Tumour Thickness:  0.88mm

Clark's Level:  IV

Ulceration:  no ulceration identified

Peripheral Margins:  uninvolved by invasive melanoma, closest margin is 4mm

Deep Margin:  distance of invasive melanoma by margin is 16mm

Mitotic Index:  less than 1/mm squared

Microsatellitosis:  not identified

Tumour-infiltrating Lymphocytes:  present, brisk

Growth phase:  vertical

***  The following week I had a re-excision of the same spot.  No evidence of atypical melanocytes or residual malignant melanoma.  I also had a lymph node ultrasound, with normal-appearing lymph nodes bilaterally.  Chest x-ray was also normal.

My surgeon is quite proactive, moreso than my oncologist.  He will order whatever tests I feel necessary.  I did not have a sentinal node biopsy, so with my mitotic index not being at 0, does anyone thiink this is necessary?

 

 

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I am having a new primary excised next Wednesday.  In preparation for seeing my surgeon again, I thought I would go get a copy of my pathology report so that I can ask him for any services I have not yet received.  Please tell me if I need anything my oncologist has missed.

Type:  Superficial Spreading Melanoma

Tumour Thickness:  0.88mm

Clark's Level:  IV

Ulceration:  no ulceration identified

Peripheral Margins:  uninvolved by invasive melanoma, closest margin is 4mm

Deep Margin:  distance of invasive melanoma by margin is 16mm

Mitotic Index:  less than 1/mm squared

Microsatellitosis:  not identified

Tumour-infiltrating Lymphocytes:  present, brisk

Growth phase:  vertical

***  The following week I had a re-excision of the same spot.  No evidence of atypical melanocytes or residual malignant melanoma.  I also had a lymph node ultrasound, with normal-appearing lymph nodes bilaterally.  Chest x-ray was also normal.

My surgeon is quite proactive, moreso than my oncologist.  He will order whatever tests I feel necessary.  I did not have a sentinal node biopsy, so with my mitotic index not being at 0, does anyone thiink this is necessary?

 

 

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Replies by: Janner, nickmo79, Anonymous, akls, buffcody

Hi everyone.

I recieved my dx in early Feburary after having a itchy mole removed on my stomach. Long story short, it came back as melanoma. It was .82mm, CL IV, no mitosis, no ucleration, and a non-brisk host response. Having a family history of this disease (my father died after a 13 year battle), I am and have been constantly worried about it.

Shortly after the dx, I had surgery to ensure clean margins and a SNB. I then went to MD Anderson to have them check me out as well and based on my aformentioned family history I was given a CT and MRI as well. Everything came back good and I am now seeing a derm every three months. Twice a year at MD Anderson and twice locally here in Arkansas.

I have a question for you guys and gals that have had node biopsies. My SNB was on my right groin (in mid Feb.). Over the past two weeks, my left groin has been in a constant state of mild to moderate pain. Is this normal? I went back to my surgeon and she didn't think much of it. She thinks it is probably just nerve damage. While I saw my nuclear scans during all my testing and can absolutely confirm that the mole drained to my right side, I'm not worried out of my mind that this has something moved over to my left side. Has anyone experienced pain in the opposite side of their body from their SNB?

Thanks for any input and my each of you find happiness in your journeys.

--Nick

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Hi everyone.

I recieved my dx in early Feburary after having a itchy mole removed on my stomach. Long story short, it came back as melanoma. It was .82mm, CL IV, no mitosis, no ucleration, and a non-brisk host response. Having a family history of this disease (my father died after a 13 year battle), I am and have been constantly worried about it.

Shortly after the dx, I had surgery to ensure clean margins and a SNB. I then went to MD Anderson to have them check me out as well and based on my aformentioned family history I was given a CT and MRI as well. Everything came back good and I am now seeing a derm every three months. Twice a year at MD Anderson and twice locally here in Arkansas.

I have a question for you guys and gals that have had node biopsies. My SNB was on my right groin (in mid Feb.). Over the past two weeks, my left groin has been in a constant state of mild to moderate pain. Is this normal? I went back to my surgeon and she didn't think much of it. She thinks it is probably just nerve damage. While I saw my nuclear scans during all my testing and can absolutely confirm that the mole drained to my right side, I'm not worried out of my mind that this has something moved over to my left side. Has anyone experienced pain in the opposite side of their body from their SNB?

Thanks for any input and my each of you find happiness in your journeys.

--Nick

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lrkg1234's picture
Replies 5
Last reply 5/4/2013 - 4:08pm
Replies by: Anonymous, thrashter, melissa ann

What does everyone think of bio chemo for a stage IV patient that is sort of recovering from other treatments??  IPI and Temodar. 

We are going to MD Anderson, meeting with Dr. Patel.   I expect this the bio chemo option to be presented to us.  I'd like to have more information, so that we can have better questions. It seems like a great thing to try at stage III or if you were in fairly good shape, but I question it when you struggling already.   I wonder if having a few weeks break could benefit the body and give IPI a chance to do it' s thing.

Sorry for asking so many questions, I'm sort of frazzled at this time.  I'll relax in a week or two and try to help others instead of being such a posting hog.

Lisa

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Debideb's picture
Replies 2
Last reply 5/2/2013 - 3:32pm

I am a 5 year survivor of melanoma.  When I was first diagnosed I was on this site almost 24/7, and I can't tell you how much it helped me and gave me courage and knowledge.  

I just watched the latest episode of Undercover Boss about a gym chain called Retro Fitness.

I the opening couple of minutes, the CEO, Eric Casaburi, brags that his gyms offer tanning beds...of course I cringed, and thought to myself that here was another person obviously oblivious to melanoma.  

However, In the very next minute or so, Eric reveals that his mother died when he was only 16 of MELANOMA!  Needless to say, I was horrified and outraged at the same time. I wrote an email to the company expressing my horror that they promote tanning beds and that tanning beds greatly increase the risk of melanoma,  and the CEO himself sent me this reply from his email address, ECasaburi@retrofitness.net:

 

Do your homework it's safer than tanning in the sun and in a controlled environment. 

 

Go to the facebook page for this company https://www.facebook.com/retrofitnessgym?fref=ts  and express your concerns.  One way to help save people from this deadly disease is to educate them about the dangers.  Knowledge is power.

 

God bless all of you and thank you for reading this.

 

Debideb

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I am a 5 year survivor of melanoma.  When I was first diagnosed I was on this site almost 24/7, and I can't tell you how much it helped me and gave me courage and knowledge.  

I just watched the latest episode of Undercover Boss about a gym chain called Retro Fitness.

I the opening couple of minutes, the CEO, Eric Casaburi, brags that his gyms offer tanning beds...of course I cringed, and thought to myself that here was another person obviously oblivious to melanoma.  

However, In the very next minute or so, Eric reveals that his mother died when he was only 16 of MELANOMA!  Needless to say, I was horrified and outraged at the same time. I wrote an email to the company expressing my horror that they promote tanning beds and that tanning beds greatly increase the risk of melanoma,  and the CEO himself sent me this reply from his email address, ECasaburi@retrofitness.net:

 

Do your homework it's safer than tanning in the sun and in a controlled environment. 

 

Go to the facebook page for this company https://www.facebook.com/retrofitnessgym?fref=ts  and express your concerns.  One way to help save people from this deadly disease is to educate them about the dangers.  Knowledge is power.

 

God bless all of you and thank you for reading this.

 

Debideb

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