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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http://www.youtube.com/watch?v=d8H4kd6ee94&feature=related

And I thought my surgery was extreme!

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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lisamom2lucas's picture
Replies 4
Last reply 8/10/2012 - 2:52pm
Replies by: Janner, Anonymous, lisamom2lucas

I have a strong family history of melanoma, and I am also covered in moles.  Have had at least 10 biopsied.  All have come back normal or mildly dysplastic.  I had my yearly exam on Wednesday and for once they didn't want to remove a bunch, which was nice.. however -- one did concern him.  It is on my left thigh.  I had it removed and biopsied about 3 years ago.  it came back as mildly atypical.

I never thought much of it, but I did notice the pigment was growing back in it (almost immediately after it started healing).  My moles were all removed by shave biopsy (which I'll never let them do again!) and most of my other moles have SOME pigment growing back.

 

The derm said it was suspicious, because it is growing back very weird looking (asymmetrical, 2 different colored browns, bigger than pencil eraser, etc)

He said it could definitely just be the way it is growing back through the scar tissue, but wants to do an excision on Monday to be sure.

I have bad healthy anxiety and with my family history I'm losing it.  What are the chances that mildy dysplastic has turned into Melanoma in 3 years?  Also I've had my yearly exams every year since the biopsy and no one has mentioned removing it (Had a different doctor this time)

 

I know I want KNOW until a biopsy.. but can anyone relate?

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Vermont_Donna's picture
Replies 10
Last reply 8/10/2012 - 11:18am

Hi everyone,

  I havent posted in a while...have been busy working and enjoying life. I am now 18 months NED!! In July 2012 I had my quarterly oncology checkup, PET/CT scan, and today had a followup ultrasound of a specific "hot" spot on my leg that didnt show anything to biopsy. So this is the longest I have been NED since i was diagnosed with stage 3a melanoma cancer in Septermber 2006. For those who arent familiar with my history, you can peruse my profile but I have had many treatments to my leg (where the melanoma has been) including interferon, leukine, radiation twice, isolated limb perfusion and ipilimumab (Yervoy). Yervoy was my last treatment that I did, and I had four doses, 3mg/kg. I had relatively few side effects. I have moderate lymphadema and neuropathy in my right leg and wear a compression stocking and do maunual lymph drainage daily.

 I just wanted to share my good news and wish everyone well and the success (NED) that I have finally achieved. Jimmy B says if I stay NED three years then maybe I can say "cured"?? Jimmy...I am halfway there!!!!!!

Hugs to all,

Vermont_Donna, stage 3a

 

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Rocco's picture
Replies 8
Last reply 8/10/2012 - 11:17am

July CT and MRI were both clean as they've been since 2009.   I pressed my Onc to clear with the trial company (MDX-010) that I could move from quarterly scans to a 6 month scan frequency.  Great feeling as I now have no planned medical appointments until after the New Year.

Hang in there everyone!  Prayers and good vibes sent to all in this fight..

- Rocco

Stage IV since August 2005, IpI responder - last dose in Feb 2009

Luke 1:37

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triciad's picture
Replies 6
Last reply 8/10/2012 - 9:44am

Hi Everyone,

My new oncologist told me to take resveratrol, tumeric, and paba.  When I went to buy the resveratrol, there were so many different kinds, I just came home.  Does anyone have any suggestions as to what kind, brand, and how much?

Thanks for your help and best wishes for good health to all warriors!

Tricia

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Valentine's picture
Replies 10
Last reply 8/10/2012 - 8:24am

Last night I found a lump the size of a marble in my left groin, just above the scar from the lymph node dissection I had 2 years ago. I can't see the dermatologist until Sept. 5. I am worried about waiting that long to have it biopsied. How fast does melanoma grow?

Because of the lymph node dissection, I have lymphedema. I use a Flexitouch every night to help control the lymphedema. Now I don't know if I should use it. If this lump is cancer, wouldn't I just be encouraging it to spread?

So, I'm just freaking out, and I have no one to talk to about it. I know there are no real answers to my questions/concerns, but I sure would appreciate some feedback on whether it would be a good or bad idea to use the Flexitouch for the next month+.

Thanks!

Cheri

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When I was researching a cure for my melanoma this would have been a Godsent!

Best wishes to all who are fighting this disease....  Gene

http://www.hindawi.com/search.aspx?startindex=1&field0=9&q0=melanoma

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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Anonymous's picture
Replies 3
Last reply 8/9/2012 - 8:13pm
Replies by: Janner, Anonymous

Hi

I'm 2 months put from WLE and SLNB for a stage 1 b melanoma on upper arm so tensions are still high.

I went in for my first melanoma skin checkup and Derm was rushed. I pointed out 2 very small brown pigmented "things" that didn't even resemble a mole. I am fair skinned and they looked like a freckle- honestly.

Derm reluctant to take them off saying nothing to worry about but I persisted. Here are the results:

Lt arm: pigmented surface lesion 0.3 cm in greatest dimension. Sections show slight elongation of rete ridges and a proliferation of mildly atypical melanocytes arranged mainly as single cells with rare nests along the dermal epidermal junction. The melanocytes possess lightly pigmented cytoplasm. There is a rare melanocyte noted above the basal cell layer. There is fusion of rete ridges and lamellar fibroplasia. In the dermis isa band- like arrangement of benign nevus cells, scattered melanophages and a mild lymphocytic infiltrate. Histology that of a Dysplastic nevus with unusual features. Conservative re excision of scar recommended.

Left breast: pigmented surface lesion 0.3 mm in greatest dimension. This is a thin shave biopsy which shows elongation of rete ridges and a proliferation of mildly atypical melanocytes with lightly pigmented cytoplasm arranged mainly in a lentiginous pattern along the dermal- epidermal junction with rare nests. There is a rare melanocyte noted above basal cell layer. The epidermis is vocally excoriated and rare necrotic keratinocytes are noted within the superficial epidermis. There is a fusion of rete ridges and lamellar fibroplasia. In the dermis is a rare nest of benign nevus cells scattered melanophages and a mild lymphocytic infiltrate. Histology is that of a dynastic nevus which has been excoriated. Although the rare scatter can be explained by local trauma and special site, it would be prudent to re excise scar with conservative margins.

Now I'm off to plastic surgeon ! What should I do moving forward? I have a few of these very " innocent" looking freckles on my back that do not have elevation and look normal? The Derm didn't want to pursue taking even these ones above off for pathology! Should I be worried a d get a other skin check done before my next scheduled in 3 months? And I sits every "freckle" that looks like the ones on breast and arm be taken off?

Thanks friends,
Francesca

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himynameiskevin's picture
Replies 22
Last reply 8/9/2012 - 8:10pm

Hi this is Brenda writing on behalf of Kevin. Unfortunately I had to check him in to the hospital today. He began having intense pain in the lower part of his head Sunday night, lasting all day Monday. He was already having trouble eating, what with all the stress of waiting for scan results, and the pain made it worse. Unable to sleep or hold any sort of liquid or medication down, we made the choice to go to the E.R ,  we were only there for an hour, they gave him a prescription for pain (Percocet) , told him not to stress, and sent us on our way.

The pain medication didn't help, after numerous calls to his radiation oncologist, we got a call back with the advice to have him admitted. Although his wish was to zap the remaining mets in his head and start IL2 and possibly go back on Zelboraf it looks like we may have to take another route. Because of all the swelling in his brain he is back on a steroid (for now),  with the addition of new mets in his lungs and one in his hip area, the plan now is to do whole brain radiation and follow up with Temodar, with the hopes of some brain stabilization in order to be eligible for some clinical trials (fingers crossed).

Even with this small bump in the road his spirits are still higher than ever. He's a fighter, he's Kevin. And Kevin doesn't give up.

His mpip family has always had a special place in his heart, so i ask all of you to please send Kevin some good vibes.

 

i wish all of you love and healing.

-Brenda.

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Hi: I'm looking for personal accounts of melanoma patients who have had a single brain met removed and who then underwent radiation to minimize odds of recurrence. I had a temporal lobe lesion resected on Sunday; follow-up MRI showed no residual tumor. My choice now is to either go with gamma knife or whole-brain radiation. I'm getting opposing opinion from docs in on my care. My preference is gamma knife--quick and relatively harmless, but want to make sure whole-brain isn't worth the side-effects if it provides significant advantages in reducing recurrence. Let me know if you have experience to speak from or an informed opinion. Thanks.

www.theogler.blogspot.com

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Gene_S's picture
Replies 2
Last reply 8/9/2012 - 7:17pm
Replies by: Gene_S, ToddC

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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Kellie-T's picture
Replies 2
Last reply 8/9/2012 - 7:14pm
Replies by: lhaley, Dgentz

Just heading home from Moffitt. Six months on Zelboraf and still NED. My hair that was thinning is coming back curly. Side effects are really stable now. Living life and loving it! Keep fighting!

Life is not by accident. Make every minute count.

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Laurie from maine's picture
Replies 12
Last reply 8/9/2012 - 6:45pm
Replies by: Gene_S, Anonymous, TSchulz, Laurie from maine, NYKaren, Phil S

Hi,

I am in a limbo phase at moment while I wait for a zapped brain met to "calm down".  I will have scans in a month to see how brain is and then have to chose from the "short list" my doctor as suggested. 

His suggestions are IL-2 or TIL. (I am leanings towards IL but I was told if scans show brain involvement on next scans IL will not be an option as it doesnt cross brain barrier)   Doctor  and I will continue to look at PD-1 trials but he is pesssimistic that I would get a seat as there are few trial and brain involvement moves you down the list he thought, but I still will look/hope and apply.  BUT meanwhile have to have another game plan as back up.

I was told it would be very hard to push for a reinduction of IPPI for me as i was a mixed responder with partial growth or some shrinkage in most tumors but real growth in my shoulder tumor.  I was a partial responder (story of my life with melanoma it seems) with BRAF and grew 3 very agressive tumors in my intestines so BRAF scares me as a choice to go back to.  I am going to research BRAF MEK combo but I believe my doctor does not think I qualify for that one? not sure why.

I have just found a new small tumor on my other shoulder and this one is painful - that is new for me most of mine are not painful, it makes me scared that cancer is starting to ramp up on me.  

I would appreciate any thoughts or input from people as I sit in limbo I can do research and come in armed with my own thoughts on plan after I hear my scans results.  I am currently getting radiation on my shoulder to cut it down a little as it is a very large tumor.

 

you are all in my thoughts and prayers-thank you

laurie from maine

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Dgentz's picture
Replies 3
Last reply 8/9/2012 - 4:39pm

Not sure when I last updated, but my IL-2 was not very successful, so on 7/9/12 I started Zelboraf. Dr. Started me on 4 pills a day, increased to 6. Now moving slowly toward the full 8 (adding 4th at night for 5 days then to morning dose). Got BAD sunburn - apparently shade is not safe enough! ;)

Joint pain has been my worst side effect though. Has anyone tried any supplements like Osteo Biflex (glucosamine)?? Advil doesn't seem to be doing much lately.

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