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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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 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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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!


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

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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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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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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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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!


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

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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?


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susanr's picture
Replies 11
Last reply 5/15/2012 - 3:33pm

Hi Everyone who reads this.  I have been reviewing the posts and think I know the answer to my question.  I would like to hear input/advice to anyone who has progressed with mets or have their mets become larger while receiving yervoy or after they finished infusions.  Appreciate the feedback and hopefully it can help others understand this drug.  I see may posts about yervoy and many feel confused about this drug.  I understand what it does but since there is not much on post market studies, We have to rely on each other to get some sense on how this drug works/responds.  Appreciate any feedback.


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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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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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benp's picture
Replies 8
Last reply 5/14/2012 - 7:23pm

Does anyone know if there is an optiomal ordering of these two therapies?

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joanic's picture
Replies 3
Last reply 5/14/2012 - 7:50am
Replies by: joanic, triciad, scots

I am currently 6-1/2 months into the Interferon injections (3 times a week) for Melanoma Stage 3b.     One of the many side effects which is driving me absolutely insane is the constant "belching".  Occurs at least 4-6 times per minute.  Feels much more like belching than acid reflux.    Have not found anything that relieves symptoms.   Either it doesn't help at all, or it's too strong and makes me nauseous.    Since I work, I try to "internalize" the belching while at work.   Driving my husband crazy because it's non-stop.   All in all - it's exhausting!   The only time I'm not belching is when I am sleeping!!   Wish I could sleep for the next 4-1/2 months!! :)

Very open to any suggestions from anyone else who has experienced this as well.   Most of the other side effects I am able to handle, but this one is wearing me down quickly!!   Thank you!!   

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AnnaBanana30's picture
Replies 10
Last reply 5/13/2012 - 9:03pm

The title says it all. I am having such a hard time lately with all of this.

My dad is stage IV and is not doing well at all. He did three rounds of Temodar in the fall and it was working pretty well and shrinking his tumors and then all of the sudden it stopped working. His doctor moved him onto Yervoy or IPI...I can't remember how to spell it but I think it's ipilimumab? He's done two rounds and is moving onto his third next week. He gets a scan tomorrow to see if it's working at all but with the way he's been feeling and acting I'm having a hard time hoping that it's working at all! He's in so much pain and can't hold anything down. He has a large tumor under his left arm and it's getting bigger every day. This all just breaks my heart.

I on the other hand had a mole removed in December that came back as melanoma in situ. Had another removed off my back in February that also came back as melanom in situ. Needless to say I am terrified. Has anyone had melanoma in situ? I just had a little boy this past August and I desperately want to be here to watch him grow up. I am so scared that what is happening to my dad will be me in a few years. I'm going to the dermatologist constantly and trying to stay on top of this as much as I can! My husband checks me over a couple of times a week and we are starting to take pictures. I just am so paranoid now about everything. I swear I feel like under my left arm (where my dad's big tumor is) is swollen and I freak out all the time and convince myself that I have a huge tumor just like my dad. Although I'm pretty sure this can't be the case as I only had stage 0.

Does anyone have any advice or any words of wisdom for me? I am so scared. I hate melanoma. I intend to spend the rest of my life spreading the word about this devestating disease.

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webpatient's picture
Replies 6
Last reply 5/12/2012 - 10:03pm

Had melanoma surgery on my right shoulder in january 2012; level one; fully wide excised; negative lymph node biopsy; awaiting first observational meeting with dermatology/surgery team after operation; now scheduled for mid june

Yesterday felt a 'bump' above my left ear, that felt / looked (from best look i could get in mirror) like a pimple infected with hair follicle and irritated by cpap mask strap.

A scab formed over it, which I accidentally broke while touching it, and it is oozing a bit right now (no blood). It just seems like an inflamed pimple; cant see it well in mirror partially covered by hair.

Am i overreacting in asking to see dermatologist before mid june scheduled appt -- can another melanoma develop so quickly as it starts oozing?

It wasnt oozing yesterday, just felt like a 'bump'

Currently thinking of putting some antibiotic cream on it to see it heals. But, given the melanoma

Appreciate any thoughts












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renakimu's picture
Replies 2
Last reply 5/12/2012 - 8:05am
Replies by: 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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