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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Lisa13's picture
Replies 1
Last reply 6/24/2011 - 7:54am
Replies by: FormerCaregiver
Many impossible things have been accomplished for those who refuse to quit

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CAdesiree's picture
Replies 2
Last reply 6/23/2011 - 6:09pm
Replies by: MichaelFL, Janner

i went today for my second opinion.  the dr is setting me up for scans & mri.  she is also sending me to oncology surgeon.  states last drs note on MOHS not very complete.  wants me to meet w surgeon to decide if we will reopen original site to verify NED.  is concerned bc biopsy stated margins involved.  so back to waiting some more.  at least i feel more comfortable w this dr.  but i will be finding a new derm to do the addl biopsies.  thanks for all the help you all have been.  i really appreciate it.  if i hadnt been warned that an oncology specialist might not biopsy i would have had a different appt today.

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Suzgolden's picture
Replies 9
Last reply 6/27/2011 - 12:38am

Any opinions on vitamins? I am not a vitamin taker but would like to start taking some before I start any kind of adjuvant therapy. I am reading about Niacin, CoQ10 and Curcumin/Turmeric.

Whatever You Are Be A Good One -- A. Lincoln Right now I am a FIGHTER!

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Melanoma Mom's picture
Replies 8
Last reply 6/24/2011 - 7:48pm

Josiah got his CT and PET results yesterday and they are looking great! Two lymph nodes in his neck lit up on the CT, but the PET showed nothing. Since Josiah has had chronic post-nasal drip from the Interferon, the Oncs are feeling strongly that the nodes are lighting up b/c of the side effects. He will be scanned again in three months and the nodes will be watched. I am trying not to worry ..... his primary growth was on his rear end so it would be more worrisome if nodes in the groin area lit up vs. so far away from original site. I have also heard from others that they had reactive nodes while on Interferon that turned out to be nothing. We are remaining positive!!

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DeniseK's picture
Replies 21
Last reply 8/7/2013 - 9:28am

Hi Everyone,

I was just diagnosed with mm on June 2, 2011.  Surgery and sentinal lymph node removal on June 8, 2011.

Pathology report came back as follows. 

Nodular Malignant Melanoma

Surface measurement 2.7 x 2.7

Breslow Depth 14mm

Clarks level V

Sparse Lymphocytic infiltrate at periphery of Melanoma

Ulceration present

Mitoses 4/mm

Skin margins and deep margins negative for melanoma

Melanoma 1.5 cm to deep margin__________________________

My doctor said I was Stage IIC with high risk reoccurrence and wanted me to research diferent options for treatment.

I understand the clarks level V isn't good and the breslow depth was high but what does the ulceration mean and why is it bad?

If anyone understands what Mitoses 4/mm means let me know too!!  Thanks for your help!!

 

Denise 

Cancer Cannot cripple love, silence courage, destroy friendship, shatter hope or conquer the spirit.

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Anonymous's picture
Anonymous
Replies 6
Last reply 6/17/2012 - 11:00am
Replies by: Pattyka, Anonymous, jimjoeb, Carver

Hi everyone, (sorry this is long & thanks for taking the time to read my post)

I am new to MPIP and need your help. I follow the posts but this is the first time I am posting. You are all wonderful & I hope you have some advice for me. I am stage 3C. I have had 3 sugeries (2009, 2010, 2011) to remove 3 recurrences all in the same place in my thigh.

My most recent surgery was 2 weeks ago today. My tumors/ subqs recurrences seem to continue to grow in the same area in my thigh. My surgeon indicated that he would have to take out the new tumor all the way down to the facia of my muscle & then also cut out the old scar area & beneath to get clear margins.

He told me that my new scar would only be 1 inch longer than my old because he was going to use the old scar area. He said that he would have no problem stitching up the area on my thigh that I would have more than enough skin to pull together. I am 62 & my skin is saggy skin so my skin would be able to be stretched. At the pre-op appointment he said this was an easy surgey for him.

When I woke from surgery, my thigh was bleeding through the gauze over my incision. This was the first time that any of my incision on my thigh ever bleed. Also, My surgeon made the incision approximately 6 inches longer beyond the old scar because he told me that he could not close because my skin came together funny & my skin looked like rabbit ears at the ends of the incision so he kept cutting my skin until the ends came together better.

Plus I am bruised from the top of my thigh to below my knee (both sides of my leg). The top of my leg is swollen all the way down to my knee. I have numbness from my thigh to my knee. I knew that he would be cutting nerves so I understand why I am numb. Maybe I am being paranoid but I suspect that he is not telling me what really happened because of the extensive bruising. The surgeon told me that I am bruised so much because of cutting close to veins.

Now that you got the picture, yesterday the surgeon confirmed that I also have a large hematoma at the top & along side of my incision & a large seroma further done the incision. The surgeon recommended that both the hematoma & seroma will eventually dissolve after a few months & I need to be patient. He rather not use a needle to drain/resolve the hematoma & seroma because it would risk infection.

Needless to say, I am very upset. I am very active & run daily. Now I can barely walk. It is painful & the hematoma & seroma do not seem to be going down. My surgeon told me to comeback to see him in 1 month and to continue my normal daily activities, but not walking too much and watch for signs of infection. Does 1 month seem like a long time to wait to see the doctor again.

Thanks again you for taking time to read my long story. I would appreciate any advice, and/or your experience with hematoma & seroma. Any recommendations what can be done to resolve hematomas & seromas. Can ice or heat help reduce the swelling? Any other comments and feedback about my situation are sincerely appreciated.

God Bless you all

Suzy

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Anonymous's picture
Anonymous
Replies 4
Last reply 11/4/2011 - 2:14am
Replies by: Najade, Anonymous, awg, MichaelFL

Hi everyone, (sorry this is long & thanks for taking the time to read my post)

I am new to MPIP and need your help. I follow the posts but this is the first time
I am posting. You are all wonderful & I hope you have some advice for me.

I am stage 3C. I have had 3 sugeries (2009, 2010, 2011) to remove 3 recurrences
all in the same place in my thigh. My most recent surgery was 2 weeks ago today.
My tumors/ subqs recurrences seem to continue to grow in the same area in my thigh.

My surgeon indicated that he would have to take out the new tumor all the way down to
the facia of my muscle & then also cut out the old scar area & beneath to get
clear margins. He told me that my new scar would only be 1 inch longer than my old because
he was going to use the old scar area.

He said that he would have no problem stitching up the area on my thigh that I
would have more than enough skin to pull together. I am 62 & my skin is saggy skin so my
skin would be able to be stretched. At the pre-op appointment he said this was
an easy surgey for him.

When I woke from surgery, my thigh was bleeding through the gauze over my
incision. This was the first time that any of my incision on my thigh ever
bleed.

Also, My surgeon made the incision approximately 6 inches longer beyond the old scar
because he told me that he could not close because my skin came together funny & my skin
looked like rabbit ears at the ends of the incision so he kept cutting my skin until the
ends came together better.

Plus I am bruised from the top of my thigh to below my knee (both sides of my
leg). The top of my leg is swollen all the way down to my knee. I have numbness from
my thigh to my knee. I knew that he would be cutting nerves so I understand why I am
numb. Maybe I am being paranoid but I suspect that he is not telling me what really
happened because of the extensive bruising. The surgeon told me that I am bruised so
much because of cutting close to veins.

Now that you got the picture, yesterday the surgeon confirmed that I also have a
large hematoma at the top & along side of my incision & a large seroma further
done the incision. The surgeon recommended that both the hematoma & seroma will
eventually dissolve after a few months & I need to be patient. He rather not use
a needle to drain/resolve the hematoma & seroma because it would risk infection.

Needless to say, I am very upset. I am very active & run daily. Now I can barely walk.
It is painful & the hematoma & seroma do not seem to be going down. My surgeon
told me to comeback to see him in 1 month and to continue my normal daily activities,
but not walking too much and watch for signs of infection. Does 1 month seem like a
long time to wait to see the doctor again.

Thanks again you for taking time to read my long story. I would appreciate any advice,
and/or your experience with hematoma & seroma. Any recommendations what can be done to
resolve hematomas & seromas. Can ice or heat help reduce the swelling?
Any other comments and feedback about my situation are sincerely appreciated.

God Bless you all
Suzy

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debandmike's picture
Replies 8
Last reply 6/23/2011 - 9:46am

On Tuesday we went to Detroit to receive Mike's scan results from his 1st series of IL-2. IT"S WORKING!! Tumor in lung has shrunk some 10% and tumor in liver is stable with no spread of cancer. Yeah!! Going back to hospital on July 11th for round #2. Wishing results could be faster but learning that patience is what is needed to fight this nasty cancer. Hoping for continued good news in the future and hoping Miike will be able to handle his 2nd round of IL-2 as well as he did his first.

Debby and Mike

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Gene_S's picture
Replies 1
Last reply 6/22/2011 - 7:05pm
Replies by: NYKaren
Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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mother-to-be's picture
Replies 12
Last reply 6/26/2011 - 3:59pm

Hi, I was recently diagnosed with superficial spreading melanoma on my upper left arm.  Breslow 1.1m, with ulceration and a high mitotic rate.  Last Friday, I did the SNP which initially came back negative.  The pathology report came back yesterday with 2 nests of activity, the largest one is .25mm, so it's very small.  I'm seeing an oncologist today and the cancer board meets on Friday to discuss the report and treatment options. I'm 40 years old and 7 (30 weeks) months pregnant with my first child.  

What does this mean for me?  I don't have a stage yet but from what I'm reading on the internet it may be a stage III.  Please share your knowledge and advice.  Thank you in advance.  Michelle

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newmanmark's picture
Replies 9
Last reply 7/1/2011 - 11:39am

Hello,

It has been a long time since I have posted here.  I am a 31 year old Stage 3C with 8 nodes infected.  I had a complete lymph node dissection under both arms, 5 weeks of radiation and 7 months of Interferon.  The Interferon sent me into a manic state and I had to withdraw.  I have been off of Interferon since October 2010 and so far all scans have come back clear.  While going through radiation my wife and I had our first child.  This had to be the most difficult time of my life.

The reason I write is because for the past 2 weeks I have had some discomfort in my abdomen area especially in the upper right portion (under my ribs).  I am concerned that the melanoma may have come back in my liver.  My oncologist has ordered a CT scan to rule it out.  However the scan isn't until July 11th.  The wait is awful and my mind continually races.

It would be good to hear from other Stage 3 patients (especially 3C) who are doing well long after their diagnosis.  I am constantly reading horror stories and it drags me down mentally.  Is there anyone out there with a good story of reamining NED with several nodes infected?

Thanks
Mark

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awg's picture
Replies 2
Last reply 6/22/2011 - 2:32pm
Replies by: Janner, MichaelFL

As a newer member to the form I want to thank everyone for the abundance of great information that is available, It has been very helpful to me and my family.

I have a friend who was just diagnosed by her derm with a 0.2mm Melanoma on her upper back.

The derm is planning to remove the surrounding tissue, wide excision himself (she was told it could be about half the size of a football) . It is normal for derms to do this?

I know primary depth is a huge determining factor but my derm sent me straight to surgical Onc but my melanoma was greater that 1.0mm.

Would it be best Surgical Onc for Wide excision and do a Node bx as well?

Thanks,

 

Allen

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salliemae's picture
Replies 15
Last reply 6/24/2011 - 10:25am

Hi everyone,

I'm posting for my father-in-law, who has recently diagnosed stage IV melanoma, throughout lungs, on spine, liver, hip, some brain mets.  He's 79 and was very active before the symptoms that eventually led to his diagnosis.  He has had some traditional radiation on his spine and hip and was basically on "hospice-track" with his first, general oncologist.  When we asked about yervoy, that doctor hemmed and hawed and finally got back to us that the practice didn't want to lay out the money for the drug, even though there's Medicare coverage, and BMS told me over the phone that there haven't been Medicare coverage problems that it's aware of. 

So he went to a true specialist in this area. We are very glad that doctor agreed to see him, and quickly. That doctor has decided not to give him Yervoy because it takes 9-12 weeks to work and weighing in side effects given his age and frailty.  If BRAF tests come back positive, that doctor has promised to try to get him in a trial with the V-drug that Genentech is testing, because it works fast.

The family is deciding whether to keep pursuing Yervoy.  After all, his BRAF test may be negative.  And my father-in-law is walking around the house and eating OK.  He was very vigorous until recently.  FOrgive me because I'm getting all this thirdhand, but have y'all ever heard of doctors refusing yervoy because of frailty?  Have y'all also heard or experienced the 9 to 12 week delay?  How much do the side effects really matter with a prognosis like this?

Finally,does anyone know doctors who really are prescribing Yervoy since approval?

Thanks in advance,

Salliemae

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triciad's picture
Replies 1
Last reply 6/26/2011 - 1:05pm
Replies by: carol b

I was just wondering if anyone has heard from Carol B.  She's in my prayers, but I haven't seen anything about her lately.

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awg's picture
Replies 4
Last reply 6/21/2011 - 11:21pm

Has anyone worked with their insurance agent to make any changes to existing polices after DX and NED given?

What is the NED period they look at?

Were they willing to work with you (I know most likely at a higher rate)?

 

Thanks,

Allen

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