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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Fighting Mama's picture
Replies 11
Last reply 6/27/2012 - 6:34pm

The photosensitivity on Zel is no joke! My family and I attended a local annual parade recently...I had on long sleeves, pants, shoes, a scarf covering my head with a hat, sun glasses and sun screen (UVP 50) on my face, lips and ear lobes (the only parts exposed) and sat in the shade. But to no avail I still managed to burn, blistering all that was exposed. I have even burned during my brief work commute (and I wear sunscreen diligently). Anytime I am in the sun within 5 minutes I feel an acid-like burn. 

What has worked or helped for other folks on Zel? My hubby had a special UV protective tint applied to our vehicle windows, I have purchased some UVP clothing...but I refuse to stay inside and not enjoy summer time with my family!

I would love to hear from others going through this.

Best,

Amy

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Erinmay22's picture
Replies 7
Last reply 6/26/2012 - 12:06am

Hey folks - I'm just curious how long it took before you started seeing other skin growths from Zelboraf?  I've started to notice a lot of bumps on my skin.  You can kind of see them on my hand here (in the middle top towards the knuckles).  They are fairly flat and clear.  Just curious if other folks have seen the same thing.  I did notice some of these though before I started on Z.  

I've also noticed since I had my rash really bad last week what appear to be more red/cherry marks (maybe Cheery angioma's?).  I'll see my oncologist Friday and Derm the following week so I'll ask them about these spots then.  Was just wondering what folks have experienced.  I am now on a reduced dose.   Feeling pretty good except for the darn joint pain.  

Have a great weekend everyone!

Erin

 

www.melanomaandthecity.blogspot.com "people will forget what you said, people will forget what you did, but people will never forget how you made them feel' Maya Angelou

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Francesca's picture
Replies 20
Last reply 3/20/2016 - 7:23pm
Replies by: Anonymous, Janner, Francesca, Cooper, LynnLuc, 9 Sandy

Hi,

 

I am 33 year old Canadian newly diagnosed Stage 1B, had my WLE and SLNB last month and while all the tissue and nodes were clear I still have some questions about original pathology.

Originally, I had a shave biopsy which was bisected; one pathologist reported 1 mm and other 1.45 not ulcerated Clark 3  (one patholgist said deeper levels of skin show involvement of deep and lateral resection margins which were not reviewed by other pathologist) Surgeon didnt seem concerned when I pointed this out. 

Since it was a shave biopsy I  expected depth to increase but onc surgeon told me there was absolutely no evidence of melanoma in wle tissue so depth remains 1.45 (seems like this never happens with shave biopsies, am I right). Surgeon said they throughly examine tissue with hundreds of slides and hence 3 week wait for results!! She said I should be reassured it didnt have any further melanoma in wle. But somehow I am not.

Histologic Type: Other - Lentiginous. Now is this the same as "lentigo maligna melanoma" because that is rare  associated with elderly/sun damaged and slow evolving which is not my case. Noticed it on posterior upper shoulder/arm in shower 6 months ago. It was brown and symmetrical ( glad I insisted I get it off soon!)

I have also read its difficult to decipher between lentigo maligna and lentigo maligna melanoma. Just seems funny because pics Ive seen online dont look anything at all like mine.

Mitosis is listed as 3 by one pathologist and >1mm2 by the other. Peripherl margins say both involved by invasive melanoma and involved by melanoma in situ. Even though I should be relatively pleased with my surgery outcome (though realize no guarantee) I am now wondering if I should ask for another pathologist to examine orginal tumor. Will it change my staging - probably not but I am so scared because 1.45 seems relatively risky. What is your opinion? Thanks and best wishes to you all.

Francesca

 

 

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Hi,

 

I am 33 year old Canadian newly diagnosed Stage 1B, had my WLE and SLNB last month and while all the tissue and nodes were clear I still have some questions about original pathology.

Originally, I had a shave biopsy which was bisected; one pathologist reported 1 mm and other 1.45 not ulcerated Clark 3  (one patholgist said deeper levels of skin show involvement of deep and lateral resection margins which were not reviewed by other pathologist) Surgeon didnt seem concerned when I pointed this out. 

Since it was a shave biopsy I  expected depth to increase but onc surgeon told me there was absolutely no evidence of melanoma in wle tissue so depth remains 1.45 (seems like this never happens with shave biopsies, am I right). Surgeon said they throughly examine tissue with hundreds of slides and hence 3 week wait for results!! She said I should be reassured it didnt have any further melanoma in wle. But somehow I am not.

Histologic Type: Other - Lentiginous. Now is this the same as "lentigo maligna melanoma" because that is rare  associated with elderly/sun damaged and slow evolving which is not my case. Noticed it on posterior upper shoulder/arm in shower 6 months ago. It was brown and symmetrical ( glad I insisted I get it off soon!)

I have also read its difficult to decipher between lentigo maligna and lentigo maligna melanoma. Just seems funny because pics Ive seen online dont look anything at all like mine.

Mitosis is listed as 3 by one pathologist and >1mm2 by the other. Peripherl margins say both involved by invasive melanoma and involved by melanoma in situ. Even though I should be relatively pleased with my surgery outcome (though realize no guarantee) I am now wondering if I should ask for another pathologist to examine orginal tumor. Will it change my staging - probably not but I am so scared because 1.45 seems relatively risky. What is your opinion? Thanks and best wishes to you all.

Francesca

 

 

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lyndaloo's picture
Replies 5
Last reply 6/22/2012 - 7:23pm

Hello - My husband had lung surgery Feb/11 and a craniotomy June/11 with WBR and targeted radiation to other brain lesions.  His 4th (last) IPI infusion was Feb/12. This weeks scan results showed all body tumors and skin tumors have disappeared, the brain is also clear except for one lesion that they believe is responding to IPI and is showing signs of "exploding" and breaking apart.  This is encouraging news, what a blessing!!!!  The ipi treatment caused alot of edema in the brain but happy to report he is off all steroids now.  He is now left with poor eyesight.  We are seeing an eye doc today and another eye doc on Monday to see if they can help him.  We don't know if this is the fallout of the brain radiation since one of the tumors was near the ocular nerve, or if the ipi has caused this.  I am hoping they can help him, as he cannot work/drive with his vision impairment and is self employed.  All this aside, we are overjoyed with the results!!!

Loving wife Lyndaloo

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The Melanoma Research Foundation (MRF) invites you to join a discussion of the factors behind the alarming increases in melanoma rates in the U.S. population, particularly among young people; the role of legislation and regulation in reducing the risk of diagnosis; and important scientific updates from the recent American Society of Clinical Oncology (ASCO) annual meeting.

When: Wednesday, June 27th, 1:30-2:30pm

Where: Rayburn Office Building, Room #2218

Scheduled speakers include:

  • Representatives Brian Bilbray(R-CA), Carolyn Maloney (D-NY), Rosa DeLauro (D-CT) and Charlie Dent (R-PA)

 

  • Dr. Jeffrey Gershenwaldof the MD Anderson Cancer Center in Texas who will provide an update on the 2012 ASCO conference and the most promising and immediate opportunities for treatment breakthroughs

 

  • Diana Dreman, former Miss Colorado, and her mother, Rebecca King-Dreman, former Miss Colorado, former Miss America and Stage IV melanoma survivor, who will discuss the personal impact of melanoma and the urgency of discovering new treatments

 

Please RSVPto the MRF at 202-347-9675 or by email at info@melanoma.org.

  If you are not in DC, you can still participate by contacting your member of Congress and urging them to attend.

 

Thank you!

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Rdmstm's picture
Replies 3
Last reply 6/23/2012 - 12:41am
Replies by: Cindy33, gabsound, kthekhal

Yesterday I visited a wonderful dermatological surgeon at the Univ. of Penn. regarding my recent diagnosis of insitu. Since I traveled over an hour to see him he was nice enough to perform a second excision yesterday, so I wouldn't have to make an additional trip later. While was there I had him look at a mole on my leg that looks 'wrong' to me. He said since my recent diagnosis of insitu, I could have it removed or have my local dermatologist watch it. I asked him if he could remove it and he stated that I need to visit my local dermatologist. I visited my dermatologist 4 days ago and she examined this mole and said it seemed to look fine. This mole is on my body pictures take 1 year ago, but I think it NOW looks different. I have an appointment in 6 days to have a biopsy done of this suspicious mole. I am fraught with worry that this mole will come back as a more advanced stage of melanoma and still struggling to believe this is happening....

Any words of advice are extremely appreciated!!! Thank you.

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gabsound's picture
Replies 4
Last reply 6/22/2012 - 11:56pm

Hi,

My last scans showed mostly good news. No growth in any lung lesions, bones look pretty good. Still have lesions in the liver, but less active. One liver lesion did grow and show increased activity on the PET.

Dr thinks the Yervoy could very well continue to work and we could watch and wait. He also offers to do another course of Yervoy, but wants to irradiate the lesion in the liver that is growing.

Has anyone had this done in their liver? Wondering how painful and what to expect. The oncologist said they will likely do a biopsy first then they have to put in some markers around the lesion for the machine to track. From what I read, after that it's 1 to 5 treatments.

I had the first dose of second round of Yervoy yesterday.

Also had our first real vacation since Dx in Jan 2011. We spent 10 days in Maine. Beautiful state! Also went to the museum of Fine Arts in Boston. Very relaxing. It was hard to see all the pale people (like me) on the beach sitting in the sun. I still enjoyed the beach , but did it late in the day or early in the am with sunscreen, a hat, pants and long sleeves.

Julie in Las Vegas

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jag's picture
Replies 17
Last reply 7/1/2012 - 3:35pm

Well, 9 years and 2 days ago, I was diagnosed with melanoma on my birthday(or rebirthday-depending on how you see it). Life had plenty of rollercoasters since then-1 lung wedge biopsy, 6 rounds of biochemotherapy, 4 rounds of interleukin 2, complete removal of my left lung. 6 brain surgeries, 2 SRS procedures, 1 patch radiation, and finally out of the hospital for almost 2 years. In the mean time, I have seen all of the major national parks, gotten engaged- then married, started my own veterinary housecall service, and just this year we had our first son and named him after my oncologist-Jedd.
Life has turned around and improved immensly for me, yet I read here nearly everyday. I take my antiseizure meds everyday-but I'm slowly tapering.
Next year I am considering running the NY marathon, not just for me, but for all of the other patients who haven't made it, for all of the people trying to beat it, and to thank God for the gift of life.
God Bless you all and much hope for NED in the future.

Insert Generic Inspirational Motto Here

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bikerwife's picture
Replies 8
Last reply 6/22/2012 - 6:45pm

Lynn had his 12 week scans after yervoy they showed some shrank and went away but one in chest cavity grew a little tumors on kidney stayed the same our dr said we could wait 2 months and scan again but he felt waiting to see if they grow. Isn't a good idea so he would prefer that lynn start zelobraf. So Monday he will start. I'm very scared read so many things on here about side effects.

I told the dr I had read that it only works for 7 to 8 months he said all patients are different and he had a patient that had been on it for 2 years. He also said it was the miracle drug.

Dr. Shirai just got back from a conference in chicago and that there is somr trails going on that look very promising and he would be starting them at musc.

I guess all we can do is live day to day make the best of it and hope for the miracles God has promised us. I pray for this board daily may God bless each of you.

Thanks for listening everybody I'm one scared worried wife. I love my Lynn so much. I wish I could just reach out and talk to some of y'all goes you truly know what I'm feeling any help and advice would be appreciated.

God Bless

What God leads u to he will. Lead you through

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Iowa98's picture
Replies 9
Last reply 7/9/2012 - 10:14pm

Hello,

New to the board and looking for some guidance.  My father was diagnosed with Stage IV Melanoma in January of this year.  He has been on 4 treatments of Paxil/Carboplatin, but recently his scans showed that the treatment was no longer working.  We are trying to get him into a PD-1 trial, but live in Iowa so the travel to the coasts to participate is difficult.  If we are unable to get inot a PD-1 Trial, we would like to consider Yervoy, but want to understand the risks.  His doctor also recommended Tamazolide, which I'm not thrilled about as it is not very effective.  Any stories/recommendations?  Wish there was a crystal ball.....

Thanks,

Jessica

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Hello,

New to the board and looking for some guidance.  My father was diagnosed with Stage IV Melanoma in January of this year.  He has been on 4 treatments of Paxil/Carboplatin, but recently his scans showed that the treatment was no longer working.  We are trying to get him into a PD-1 trial, but live in Iowa so the travel to the coasts to participate is difficult.  If we are unable to get inot a PD-1 Trial, we would like to consider Yervoy, but want to understand the risks.  His doctor also recommended Tamazolide, which I'm not thrilled about as it is not very effective.  Any stories/recommendations?  Wish there was a crystal ball.....

Thanks,

Jessica

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hope4cure1's picture
Replies 16
Last reply 11/15/2012 - 4:39pm

We got scan results today.  My husband is now 11 months NED.  September, 2010 he had 2 lung mets removed surgically.  February 2011 he had 4 liver mets and 2 lymph nodes in his chest. He started a combo of Carboplatin, Abraxane, Avastin.  Since last September, he has just been on Avastin for maintenance. I hesitate to post this because I know that chemo doesn't have the greatest response, but I do want to give hope to anyone who feels that they are being thrown chemo in desperation. Each case is unique, which may explain the varying responses to treatment.

When I first came to this forum, I scoured the board for whispers of hope from people who were seeing success.  I hung on every NED. I think many of us do that.  Long time survivors here impart hope.The sage advice of so many caring people are gifts of knowledge. The strength, support, compassion and courage that so many of you have shown here touches many deeply.  Each loss hurts, each good report lifts.  How a group of virtual strangers can mean so much baffles me.  You do, and I thank you a million times over.

Hope  

Become what you admire.

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JennR's picture
Replies 3
Last reply 6/21/2012 - 5:14pm
Replies by: Janner, Anonymous

I had a suspicious mole removed at the derm's office a couple of weeks ago and got the results today.  The doctor called me personally and said that it was concerning, but he didn't feel it was cancerous and because of my family history of melanoma, he wanted to see me every four months.  I asked for a copy of my report and now I'm reading conflicting things online.  It sounds like some doctors recommend going in and getting better margins.  Here is what my report says:

PATHOLOGIC DIAGNOSIS:

Lentiginous Melanocytic Nevus, Compound Type, Irritated (Compound Melanocytic Nevus with Architectural Disorder)

 

MICROSCOPIC DESCRIPTION:

This is a compound nevus.  There is pigmented parakeratosis present.  There is architectural "disorder" characterized by a lentiginous proliferation of melanocytes between irrecgular nests of cells along the dermal-epidermal junction, highlighted by MART-1/MelanA immunohistochemical staining.  There is underying fibroplasia of the papillary dermis.  The intradermal component is bland appearance and matures with depth.  Original and deeper sections were reviewed.  (Compound Clark's Nevus or Compound Dysplastic Nevus)

 

Can anyone help me decipher what this really means?  Do I need to get a second opinion or just follow his recommendation of being seen every four months?

Thanks in advance for your help!

Jennifer

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I had a suspicious mole removed at the derm's office a couple of weeks ago and got the results today.  The doctor called me personally and said that it was concerning, but he didn't feel it was cancerous and because of my family history of melanoma, he wanted to see me every four months.  I asked for a copy of my report and now I'm reading conflicting things online.  It sounds like some doctors recommend going in and getting better margins.  Here is what my report says:

PATHOLOGIC DIAGNOSIS:

Lentiginous Melanocytic Nevus, Compound Type, Irritated (Compound Melanocytic Nevus with Architectural Disorder)

 

MICROSCOPIC DESCRIPTION:

This is a compound nevus.  There is pigmented parakeratosis present.  There is architectural "disorder" characterized by a lentiginous proliferation of melanocytes between irrecgular nests of cells along the dermal-epidermal junction, highlighted by MART-1/MelanA immunohistochemical staining.  There is underying fibroplasia of the papillary dermis.  The intradermal component is bland appearance and matures with depth.  Original and deeper sections were reviewed.  (Compound Clark's Nevus or Compound Dysplastic Nevus)

 

Can anyone help me decipher what this really means?  Do I need to get a second opinion or just follow his recommendation of being seen every four months?

Thanks in advance for your help!

Jennifer

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