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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sweetiejs's picture
Replies 7
Last reply 8/7/2015 - 8:13pm

Stage 1 melanoma on arm. Original slice biopsy .45 mm....had surgery....doc removed 2 cm most places, and when the tissue biopsy came back, results showed 1.2 mm depth. Doc now wants to do a sentinel node biopsy, and reopen the incision to remove some more tissue in the couple places she did not get the full 2 cm.......general anesthesia...which i don't deal well with.....I don't believe in chemo or radiation treatments...i have seen far too many people suffer terribly for a little extra time at just being alive...this is not how i want to handle my life......so not sure if there is an upside to having this surgery done, and see several downsides....need to get the doc's opinion on the odds...which is a guess....want to make a reasonable and logical decision.....any thoughts out there?? 

bd111342

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heg50heg's picture
Replies 2
Last reply 8/6/2015 - 8:37am
Replies by: Janner, stars

Its been a while since I have had to ask questions on here as I hve been having good scans for the past 4 years. Have had several biopsies which have came back posative over last years but all have been negative.

My question to all is : Can you get a melanoma spot on the elbow as I have a rather unusual loooking spot that has popped out and looks kind of like the brown spots that I have had biopsied in the past only this new spot is puffed out a bit and looks a little jagged , but in the same token it does not look like my first melanoma which did in fact look like a large dark mole. So just wondering if a mel could pop out on an elbow like this.

Thanks Harold Grieshop  4 year styage 3 survivor

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DianaD's picture
Replies 6
Last reply 8/6/2015 - 12:59am

I will be having a biopsy of the two moles on my back on Monday, Aug. 10th, at the University of Chicago.  Dr. Farah Abdulla will be performing the biopsy. 

DianaD

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mrsaxde's picture
Replies 6
Last reply 8/7/2015 - 9:19am

Last winter I did the course of Yervoy (ipilimumab) and got what my oncologist classified as "mixed results." It seemed to stop the growth of a small spot on my lung, which was still unchanged as of my last scan in May. It also seemed to stop, or slow the growth of several skin lesions near the original tumor site. But new, small skin lesions continued to appear, and my doctor decided it was time to try Keytruda.

I had one dose of Keytruda so far, two weeks ago. Every day when I shower, I reach around and inspect the lesions on my back. This morning I notices that one lesion, about the size and shape of a pencil eraser, felt much less raised. In fact, I had a hard time finding it at all at first.

I'm trying not to get too optimistic, so as to avoid a possible letdown later. But does Keytruda work that fast that I could be getting results from it after just one treatment? I also think the Yervoy is still working. I have a slight rash on my sternum, and on my back, that comes and goes. Maybe the combination of the two?

Has anyone experienced rapid results from Keytruda?

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Replies by: Christine.P, mrsaxde

My surgeon predicts the very large melanoma on my right calf a few inches above my ankle is going to need a skin graft and plan to use a wound vac for about two weeks to see if he can "close" the wound a little more before performing the graft. 

Has anyone ever had one of these? What is it like to live with a tube coming out of your leg? Any pain or just an inconvenience (e.g., no showers for 2 weeks, etc.)? 

Thank you!

Christine P. 

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DennysGirl's picture
Replies 8
Last reply 8/5/2015 - 3:17pm

a little history... My husband is stage 4 with mets in brain, neck, spine, ribs, pelvis, knee, liver and the largest in right lung and was diagnosed in May of this year. He was on a fast decline and within weeks of death before he was put on Mekinist and Teffinlar combo on June 10th. He responded very quickly to the combo and started feeling great within a week. He has been receiving short term disability through his work insurance which is good for 6 months (4 more months). We filed for SSDI and were approved right away but of course we don't receive any payments til the end of January. He is on FML right now but that ends the beginning of September which means if he doesn't go back to work we lose his insurance (which is covering most of the cost of his meds). 

Does the Short Term Disability payments end if he stops working and tells his boss he isn't coming back? The Short Term payments could get us through the 5 months waiting period without losing our house! 

He feels good now but I'm afraid the combo will stop working eventually and then we will have to reapply for SSDI and still have to wait the 5 months again! 

Renee~loving wife fighting for her hubby! 

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jamieth29's picture
Replies 5
Last reply 8/4/2015 - 10:16pm
Replies by: stars, jamieth29, dfeng, DianaD

Well since my last post about my reccurance this is what happened. I had the surgeon look at spots which are many along my scar. He told me he thought they could resect them however when i went in for surgery this past friday he thought there looked like to many to be surgically removed. He biopsied 3 additional spots. 2 of the spots were negative and one additional spot turned out positive. He told me he could do the surgery but it would require a skin graft. I am afraid if i do the graft that it may just come back again. If I'm 3c unresectable i have access to pd-1. If its resectable then I'm looking at probably a 4 week recovery and then trying to get back into the checkmate 238 trial. I'm meeting with Dr Luke tomorrow and then a plastic surgeon at UC. I hate the thought of leaving cancer on my body if its resectable but that may be my best option to get to a pd-1 sooner than later. I have a pet/ct scheduled for Thursday so the smartest move in my opinion to see what the scan shows...if my body is still clear then maybe go for the resection. I'm struggling big time with the stress. i just wish i had a clear path. The in transit spots keep popping up fast along almost my whole incision. They are very small but obviously a big problem and im worried they are a sign that my cancer is really aggressive. Very nervous about pet on Thursday. I need a doctor to give me a path and just say this is what we are doing and that's it and hopefully it meshes with my opinion. Thanks for the opinions and guidance from everyone here and good luck to those of you having a tough time right now. The last 2 weeks have kicked my ass emotionally and i have to get out of this funk!

Jamie

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Christine.P's picture
Replies 11
Last reply 8/7/2015 - 11:25am
Replies by: Christine.P, _Paul_, mrsaxde, Julie in SoCal, dfeng, stars, ldub, Anonymous

I have a large melanoma on my right calf about 2 inches above my ankle and the excision will need to be about 3x3 inches with margins. My surgical oncologist anticipates a skin graft and I really nervous about the healing process. I believe it will be a split level graft because the graft will come from my thigh.

While I don't want anyone to sugar coat anything, if you just have horror stories that aren't typical, please don't share them; I'm already scared.  (Not that anyone would intentionally scare another cancer patient; I am just easily upset and quite queasy about these things....)

I guess I want to know about healing time, pain levels, post-surgery care of both the donor site and graft site.  

Thanks for your help and advice.

 

Christine P. 

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RaquelP's picture
Replies 9
Last reply 8/5/2015 - 4:55pm
Replies by: Anonymous, RaquelP, jpg, Ed Williams, arthurjedi007

Has anyone progressed on Keytruda and now has moved on to Opdivo? Wondering if anyone has moved on to Opdivo with success and if insurance approved it.

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akamo's picture
Replies 13
Last reply 8/8/2015 - 11:54pm
Replies by: akamo, stars, jvictoria, DianaD, Anonymous, Millykamp, Janner

Hi. My husband was just diagnosed with stage 1A melanoma, .33mm.  Dermatoligist scheduled him for wide excision and sentinel node biopsy. I have done a ton of research and everthing I have read recommends not to have the sentinel node biopsy surgery (.33 not in the guidelines). The biopsy of the melanoma came back with clean margins. Please can anyone help with this decision?

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MarkL's picture
Replies 6
Last reply 8/3/2015 - 9:33pm

Just got diagnosed for second time with melanoma of the scalp (amelanotic melanoma).  Had my first episode in 2010, with WLE and no adjuvent treatment.  That tumor was .74 mm deep.  Latest tumor is 2.15 mm deep and near original site of melanoma.  Excision margins will be too wide for primary closure so skin graft will be required.  Not looking forward to seeing it on the top of my bald head but cosmetic concerns are secondary.

Big question is whether to have sentinel node biopsy.  PET/CT scans are clear.  Sentinel node is in parotid region so afraid of damage to facial nerve and parotid gland.  Would love to hear from anyone who has had lymph nodes removed from this area. 

Thanks,

Mark

Mark

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LaurenE's picture
Replies 6
Last reply 8/3/2015 - 6:44pm
Replies by: Ed Williams, Anonymous, Joe.Pro, Bubbles, Johnjk04, dfeng

Hi, I'm hoping to hear more from those out there who have gone through the combination ipilimumab and nivolumab treatment, either on trial or through expanded access. Has it worked for you? Did it not work? What side effects gave you the most problems - and what helped you through treatment?

My dad is going to start this on August 18th. He'll be traveling for the treatment and staying with me in Ann Arbor, MI each time and I would appreciate any information and insight in order to prepare myself. Thank you in advance!

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Mat's picture
Replies 33
Last reply 8/10/2015 - 12:01am

Met with my neurosurgeon on Monday morning and was directly admitted for surgery.  Surgery will be followed by Cyberknife and I'll also be scanned for other progression.  Will report back.

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casagrayson's picture
Replies 5
Last reply 7/31/2015 - 9:19pm

For those of you who have been diagnosed with lung mets, was it found on a simple chest xray, or was a CT or PET scan the thing that caught it?  

Strength and Courage,

Susan

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