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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Anonymous's picture
Anonymous
Replies 2
Last reply 2/28/2017 - 11:38am
Replies by: jennunicorn, mrsaxde

I'm obsessing with a mole on my lower leg that it might be a nodular melanoma. It's very dark but small. I saw it back in September and actually didn't change in size, shape or apperance since then. My question is could it be a nodular melanoma even if it's stable and didn't change in the last six months?? Is the biospy necessary?

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Hello!

My husband had first Gamma Knife surgery in late October - 11 lesions were treated ( various sizes from 1 mm to 2.6 cm)

MRI has been performed in 2 month after the treatment - in late December. Results were very good - almost all lesions decreased in size and no new growth found.

The next MRI ( in February ) revealed 3 new lesions and changes in size of the previously treated lesions.

Some of the previously treated lesions increased in size by 1-3 mm.

I was told that the leasions that were previously treated can't be treated again.

Does anyone had similar results after the Gamma Knife procedures?

Does the increased in size leasions indicate that they are not "dead" and continue to grow or it could be result of the immuno- targeted therapy that he is receiving at the same time?

What is usually done for the lesions that were treated , decreased in size and then started growing again?

 

 

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AB's picture
Replies 11
Last reply 2/28/2017 - 11:00am

Anyone feel their doctor is interested in them versus just what they can write about the success and or failure they have had with Patient X? I need a doctor that will give me an idea of my real options, side effects and estimated timeline for the mets to spread to my brain, chest, abdomen & pelvis. Thanks again

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Hi everyone! I haven't been around this forum much the last few months, but things are going well for me at the moment and I'm generally feeling good. I've been getting Keytruda since a year ago last July and infusion number 27 (I think) is this Friday. It's working slowly for me, but it's working. Spots on my skin and in my lung have either been stable or shrinking for months....actually we saw changes for the better in the spots on my skin after the very first infusion.

Which is why I decided to drop by with this question for others receiving Keytruda. How long have you been on it? How many infusions have you had? 

I've just been curious about other responders and the length of time they have had to stay on Keytruda. At the cancer center where I'm being treated I was one of the first to start getting it, so the nurses there tell me I've been on it longer than anybody else they've seen.

-Bill

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AB's picture
Replies 9
Last reply 2/28/2017 - 9:57am
Replies by: JohnA, AB, Mark_DC, tschmith, BrianP

Help! I used to exercise 2.5 hrs a day, now can't get out of bed most days and 30 min cycle puts me back in bed for several hours. I'm exhausted and my head constantly hurts. Any suggestions? My 14 yo twin boys are scared to be alone with me. 

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My background: I have had 2 MM in-situs, 4 severes and lots of mild/moderate atypia. Last week I noticed a tiny (1mm) spot on my upper breast that I never noticed before. It just looked like a dark brown dot, but when I looked at it using a magnifying glass I saw a black line running through it and several black dots on the edges. I'm not sure why it even caught my attention and made me want to inspect it closer. It really didn't look suspicious until I looked at it thru the magnifying glass. None of my other moles look like this one when magnified.

I called the derm office yesterday, and they told me I could come right in and have it checked. Well I went in and the derm said that it did indeed have black in it when he looked thru the dermoscope and he did a punch biopsy.  Now I am freaking out thinking the worst. Does the tiny size of the spot make a difference? Is there anything else it could be or are all moles/spots with black in them melanoma?

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Does anyone have any experience with Dr.Anna Spreafico out of PMH? We are seeing her tomorrow and wondering what to expect at the first appointment.

Janis

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km_may's picture
Replies 3
Last reply 2/28/2017 - 8:40am
Replies by: jpg, Anonymous

Hello everyone, I was recently diagnosed last week and was looking for some help with my pathology results. I have done some research online, but would love your opinions. I am 30 years old and we lost my Dad to cancer (not skin) 4 months ago. It has been very hard on us, and having to tell my family this is going to be awful. I guess I am hoping for some positive news because I have a lot of anxiety right now.

Final Diagnosis (right back/shoulder): Malignant melanoma, superficial spreading type, invasive to Clark's level II, Breslow's depth 0.4mm, nonulcerated. Radial growth phase present. Vertical growth phase is absent. Mitotic rate is 0/mm(2). The tumor is present at a peripheral biopsy margin.

I do have a couple specific questions as well, as I have my consult for wide excision tomorrow. How is is Clark's level II if there is no vertical growth? Also, it seems as though someone in my position may not get a lymph node biopsy, but I of course am terrified that it has possibly spread to them.

Lastly, I read a little bit about regression and how that is usually not a positive thing. I had an original pathology report from a smaller hospital with the diagnosis as: "Atypical compound melanocytic proliferation with regressive changes, involving 1 peripheral margin". They then sent it to the Mayo Clinic to have another pathologist look at it to "rule out melanoma". So my final diagnosis above was the one from Mayo. That pathologist did not mention anyhting about regressive changes. Does that mean they did not feel there were enough changes to worry about?

Thank you for your help in advance. I am just so scared and want to make sure that they take a big enough excision out.

 

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I had 2 groin lymph nodes removed in Dec 2016, which then formed 3 seromas, one very large and two small ones. The surgeon said these would drain on their own and possibly seep out of the incision~neither happened. After a month the surgeon drained the largest seroma twice and it returned just as large. Waited another few weeks and had radiology drain all three seromas and they returned but much smaller.The surgeon said to return in 6 weeks to have the seromas drained one last time.

Meanwhile, after two weeks and while I was on vacation last week I became ill with the chills, blacked out while trying to get back into bed, got injured from the fall,and went to the ER. I let the ER DR know that I noticed some sort of rash over the seromas. An ultrasound was done and determined that I had skin cellulitis but that the seroma fluid was not infected. Given IV antibiotics, pill antibiotics,  and, labs, xrays, etc., and sent back to the hotel. Within the next 2 days the skin infection took off and I had a huge infected seroma over the incision area. Flew home and to the surgeon just in time before it burst and had it excised. A channel was cut into my leg to drain the fluid, and now the wound is healing from the inside out. Packing the wound daily. Well, the seromas are gone (was checked today, no fluid in my leg), will take another week  of packing the wound before it closes up. I know this isn't how it's supposed to go. 

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Anonymous's picture
Anonymous
Replies 2
Last reply 2/27/2017 - 11:06pm
Replies by: brendon, Jon M

Hi All;

 

I am familiar with Jenn Unicorn (thanks for your posts!) 

Anyone else out there decide to do a 'watch and wait' instead of the groin dissection? 

If so, how are you? What was your first dignosis (thickness, ulceration, etc.) and have you reoccured? If so, when/where? Age range? 

I have previously done some crowd sourcing here on this topic without much response. Hoping everyone is out living life!

 

 

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Interesting article on some research Dr. Luke is doing.  Thought Celeste, Ed and some others might find it interesting.

http://www.medpagetoday.com/reading-room/asco/melanoma/63360

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Everymoment's picture
Replies 7
Last reply 2/27/2017 - 7:12pm

Hi,
My mother-in-law who has stage 4 breast cancer (bones, spinal cord & brain lining) received a LETTER saying he would no longer see her. We all have no idea why!!! I've been on this forum for a really long time so I thought I would reach out to you all. Any thoughts why an oncologist could/would do this.
Thank you.

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marta010's picture
Replies 8
Last reply 2/27/2017 - 7:05pm

After 5 tremondously difficult years, my husband FINALLY is responding to treatment!  His latest PET/CT scan showed a significant reduction in the tumor activity in his cervical lymph nodes and minor reduction in his periportal and portacaval nodes.  Better yet is that his brain MRI showed stability with no new tumors.  His last Keytruda infusion was in July 2017 - had to take a break due to a sudden brain edema event that required a craniotomy and Gamma Knife.  Currently, he's continues to take Dabranib - we hope to discontinue that after his next scans in 3 months if the response continues.  His quality of life still is hampered by joint pain in the hips and knees which limits his mobility.  Would love to know what others are taking to mitigate this side effect.  Thanks.

Ann

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Sunday, April 23rd, 2017
Where: Wilson Farm Park, 500 Lee Rd, Wayne, PA
What: Walk, 5K run, Kids Dash, Health Wellness Expo, FREE Skin Screening, Raffle
Time: 9:00 am, race begins 10:30 am

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