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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eerye70's picture
Replies 3
Last reply 5/21/2012 - 1:02pm
Replies by: eerye70, Anonymous, Tim--MRF

I had a melanoma in situ diagnosed in november on my right shoulder. I have tons of atypical moles. I am so spotted. I did some mole photography to keep track of them all for change. Well, i have a mole, on my right leg, it is no bigger than the tip of a pencil lead, that is dark with a shadow to the side of it. I don't know how to describe it. I have this mole and then to the side of it is a softer, paler shadow of a mole. almost as if the mole was drawn in charcoal and then smeared. It seems to have gotten darker to me. and Now when i run my finger over it, i can feel it ever so slightly. So i have called the dermotologist and they will be seeing me on monday. My regular appointment was at the end of the month anyway, but i cannot imagine waiting until then. The truth is, i am going to lose my mind until monday as well. I almost wish i had a dermoscope just to peer at it a bit myself. Not that it would do any good, but it makes me nervous. Add to that, i have a small pea size lump in my groin on the same side. Please pray that this is all something routine and not melanoma rearing its ugly head. I feel as though i am going to throw up between now and then. Debbie

Time to put on your big girl panties and deal with it!

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noisy77's picture
Replies 7
Last reply 5/17/2012 - 6:40pm
Replies by: cwu, noisy77, Lucassi, susanr, janward

Hello - 

Just wondering if anyone has acral lentiginous melanoma ?  How did you approach treatment? 

My mom has stage 3c acral lentiginous melanoma of the big toe.  She just completed radiation of the groin and curious to how others approached.

Thank you.

 

Elizabeth

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Roxy1453's picture
Replies 5
Last reply 5/16/2012 - 8:59am

I had my PET Scan today and there are no new spots and the one I have behind my knee is shrinking!! I don't have to go back for 3 months!! This is such great news, I am on cloud nine! It's been a very long 7 years of fighting!!

Don't ever give up fighting!

Nancy

"I can do all things through Christ who strengthens me." Philippians 4:13

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janward's picture
Replies 1
Last reply 5/16/2012 - 11:07am
Replies by: Karin L

I have completed 4 infusions of Yervoy.  The PET scans shows a favorable response to the treatment.  I do, however, have immune-mediated neuropathy which is getting more and more painful.  Anyone have these symptoms?  What treatment have you tried for the neuropathy and how succesful was i t?

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Bonnets's picture
Replies 1
Last reply 5/16/2012 - 11:09am
Replies by: Karin L

Sooo pleased to report that the 3 spots my hubby had bioed last week, were all NEG! Jean

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fighting4dad's picture
Replies 7
Last reply 5/21/2012 - 3:51am

 

My dad (stage 4) was supposed to start zelboraf yesterday, but at the appt. Dr. recommended they delay starting treatment until disease begins to progress again. (He was on Yervoy last fall and saw reduction in size of mets).  Has anyone heard of delaying? Supposedly Dr. told Dad that if Zelboraf doesn't/stops working there won't be much left to try, so better to wait and extend his life later.  This doesn't really make sense to me so I am looking for others with this experience, or maybe I should be trying to get Dad to get another opinion?

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TeresaK's picture
Replies 1
Last reply 5/16/2012 - 7:31am
Replies by: Anonymous

Can anyone recommend where I could send my melanoma in situ biopsy for a second pathology exam in Phx / Arizona area?

Thanks!!

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bikerwife's picture
Replies 3
Last reply 5/15/2012 - 8:38am

Had Dr. Appt Friday with Dr. Shirai tumors on body are still shrinking. We had gamma knife follow today. Dr. Generte walked in door with his team and said fanstatic. He had 5 mets they are gone only shadows and no new mets. Don't scan again for 2 months.

God has blessed our Drs with amazing healing hands. I know we have a long way to go but for know we dance.

I pray for each one of you every nite. May God bless you all. My husband is a walking miracle.

What God leads u to he will. Lead you through

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blairashley's picture
Replies 16
Last reply 6/3/2012 - 12:31am

Hi --

I'm going under on Friday to have all right underarm nodes removed after my sentinel node was positive for spitzoid cells.  What can I expect?  I know I'll have a drain.  Sorry for the vague/general question, but all I can find are lymphadema & other horror stories via Google.  Anyone care to share their experience? 

How does recovery compare to wide-excision + SLNB?  I only rested for 3 days after that one, although my incisions are still sore 3 months later.

Also, I am supposed to fly in mid-June... will that be safe?  I'll ask my doc of course... just curious now.

Thanks!

Blair, newly IIIA

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H555's picture
Replies 6
Last reply 5/15/2012 - 7:25am
Replies by: Richard_K, Fen, lhaley, Donna M.

I'm a little embarassed posting this when so many of us are dealing with incredible challenges. I'm stage IV, on Zelboraf for about 5 weeks now. just beginning to move back toward full doses after cutting back to half dose about 3 weeks ago due to a massive skin rash and bumps. My mel is in my lungs and since I've begun Zel I can tell the "masses and nodules" are significantly smaller. scans schedule for 2 weeks from now.

 

I have a full size truck and we travel to and from Seattle about once a month. it's generally a 4 hour drive. last time i got a mild sunburn on my neck from sun coming thru the drivers window even with SPF 50 sunscreeen. Has anyone gone to a tinted drivers window and how dark does the tinting have to be? Oregon has a law that requires that the window be no darker than 65% of total light transfer. thank you

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deardad's picture
Replies 14
Last reply 5/16/2012 - 10:21am

Well since the progression on Zelboraf, dad has 6 brain mets diagnosed last week and further progression through the body. He finished his first round of Temadol and has just started to experience dull headache. Feel like I'm sinking......I'm so worried I'm going to loose him soon. WBR is scheduled for Monday, but haven't read anything too promising about that. Since off the trial I feel the hospital have just given up on him, we called to tell them he was having headaches and they haven't bothered to get back to us.

Dad has a couple of months supply of Zelboraf left, and Im wondering if we should reinduce him down the track? I hear someone in the UK did this and it worked (for how long I don't know).

The biggest problems is the brain, any advice?

Feel very sad, don't want to loose him.

Nahmi from Melbourne

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Anonymous's picture
Replies 12
Last reply 6/16/2014 - 9:38am
Replies by: pathdoc, Anonymous, jnaakins, natasha, shellebrownies, Janner

I have now read 4 stories lately about in situ that has spread to organs and I'm feeling very afraid.  What I thought was not a big deal has suddenly become a very big deal and I feel my mortality is threatened.  My Doctor has even said, this WILL NOT kill you.  Now I wonder if she is competent.  Is there certain pathological traits that will make some melanoma in situ more likely to spread?  For those that did have cancer go elsewhere after being told it was incapable of spread, what were the traits on your path report and did you get a second look?  Did you have regression or was there a possible part of your lesion that was deeper?  Was it read by a dermatopathologist?  Thank you for the information.

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Lilylove414's picture
Replies 9
Last reply 5/21/2012 - 12:51pm

Hey y'all! So in a few weeks I'm taking my nephew to the pool, because I promised. What kind of sunscreen should I use? There's so many kinds and I'm confused. Gah!

If God is for us, who can be against us?

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Roxy1453's picture
Replies 4
Last reply 5/16/2012 - 4:04pm
Replies by: imissmommy2003, Anonymous, macylewis, aldakota22

I just wanted to wish all of the warriors fighting this beast a Happy Mother's Day! Keep fighting and have a great day!

I have a PET Scan on Tues. and hope to be NED! Keeping my fingers crossed and saying a lot of prayers. It's been a long 7 years!

Nancy

"I can do all things through Christ who strengthens me." Philippians 4:13

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sleepingjudy1194's picture
Replies 4
Last reply 5/17/2012 - 6:09am

I recently had a wide excision on my ankle.  It is exactly where the top of my foot meets my leg, right where it bends with every step.  Before surgery the doctor said I may need crutches for a couple days.  It's healing "beautifully" according to the surgeon, but as you all know...beautiful is not the word I would use.  She now says continue to use the crutches and keep elevated as much as possible.  It's very painful and I don't see any time in the near future where I will be wanting to put pressure or a walking motion in that area.  Has anyone out there had this done in this area and if so...how long does it take before the skin can handle weight and motion???  Good news is that the cancer did not get into the lymph nodes, so I will focus on that, BUT...I do have my moments of sadness as I realize my normal activities will be changes for quite a while.

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