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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.

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noisy77's picture
acral lentiginous melanoma
noisy77
5/15/2012 - 9:26pm
Replies 0
Views 116

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
PET Scan today
Roxy1453
5/15/2012 - 7:34pm
Replies 5
Last reply 5/16/2012 - 7:59am
Views 164
yoopergirl, Roxy1453, lhaley, aldakota22

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
Yervoy 9ipilimumab)
janward
5/15/2012 - 1:48pm
Replies 1
Last reply 5/16/2012 - 10:07am
Views 195
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
3 more spots bioed
Bonnets
5/15/2012 - 1:02pm
Replies 1
Last reply 5/16/2012 - 10:09am
Views 161
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
delay Zelboraf treatment?
fighting4dad
5/15/2012 - 12:16pm
Replies 6
Last reply 5/16/2012 - 10:14am
Views 196
fighting4dad, atcchris, hopefortomorrow, Theresa123, deardad, Kathy of Massachusetts

 

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
Second Opinion Pathology in Phoenix Area
TeresaK
5/15/2012 - 8:47am
Replies 1
Last reply 5/16/2012 - 6:31am
Views 137
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
brain scan
bikerwife
5/14/2012 - 8:04pm
Replies 3
Last reply 5/15/2012 - 7:38am
Views 306
aldakota22, gabsound, Tim--MRF

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
Lymph Node Dissection
blairashley
5/14/2012 - 6:00pm
Replies 9
Last reply 5/15/2012 - 7:36pm
Views 289
Bruce Davis, blairashley, kluft, Linny, bostonguy, CarolA, washoegal

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
Zelboraf Automobile window tint
H555
5/14/2012 - 11:43am
Replies 6
Last reply 5/15/2012 - 6:25am
Views 267
Dick_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
Finding it hard...
deardad
5/14/2012 - 3:19am
Replies 14
Last reply 5/16/2012 - 9:21am
Views 509
deardad, FormerCaregiver, benp, Tim--MRF, bikerwife, kylez, MeNDave

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
CALLING all Melanoma In Situ and shallow Radial Growth ...
Anonymous
5/12/2012 - 6:58pm
Replies 6
Last reply 5/13/2012 - 7:42pm
Views 380
jnaakins, shellebrownies, natasha, Anonymous, 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
suncreen!
Lilylove414
5/12/2012 - 5:52pm
Replies 8
Last reply 5/15/2012 - 1:08pm
Views 417
Tim--MRF, Anonymous, mcanova, Gene_S, audgator, Webbie73, Janner

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
Mother's Day
Roxy1453
5/12/2012 - 12:13pm
Replies 3
Last reply 5/16/2012 - 11:33am
Views 244
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
How long will full recovery of surgery take?
sleepingjudy1194
5/11/2012 - 7:52pm
Replies 3
Last reply 5/15/2012 - 3:30pm
Views 304
Kimberly Duncan Watts, H555, Linny

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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renakimu's picture
some good news!
renakimu
5/11/2012 - 5:27pm
Replies 2
Last reply 5/12/2012 - 7:05am
Views 312
triciad, aldakota22

mother had her appointment with onc this week!NED, 1 year and 3mnths after we found out about melanoma!

thank you all and i wish everyone NED 

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