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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Hayden30's picture
Replies 3
Last reply 8/10/2015 - 11:15pm
Replies by: Bubbles, Hayden30

Hello, 

im new to this forum and have been stage IV since February. I've had mets all over, lungs, eye muscle, bone, brain and subcutaneous. I tried yervoy which didn't help, and my doctor put me on the combo of mekinist and tafinlar because I'm BRAF positive. I'm just curious why I would do this versus just Zelboraf like other people in my position. Does one method work better? I trust my doctor, I'm just wondering if one is proven to work better or is newer. I can't seem to find the info when I research those drugs. I'll take any word of encouragement also!! It's been a rough few months. 

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anitarivera's picture
Replies 5
Last reply 8/13/2015 - 12:01pm

I thought I recently posted, but can't find my original post. I'm new here, diagnosed last October with stage 1b melanoma, had a WLE and no further treatment. I consider myself extremely lucky.

my husband and I want to have another baby but no doctor will give us a straight answer about the possibility of the pregnancy causing melanoma to rear its ugly head again somewhere on my body. We are scared/confused and would appreciate anyone's experience or knowledge with regards to this topic.

thank you!

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strideam's picture
Replies 5
Last reply 8/12/2015 - 4:47am
Replies by: stars, strideam, tsykes1

Hi, so thankful to find this group. I'm 39 and on July 27th was diagnosed with melanoma in situ, had a WLE the next day. I don't have the pathology back for that yet. Pure chance that I asked my regular derm to look at the funny mole on my calf--she biopsied it immediately. I have no family history of melanoma, no tanning beds ever, but a few sunburns I can remember and I've lived in SoCal for 15 years. Still, I was absolutely shocked at the diagnoses.

I went to a derm specializing in skin cancer and had two other 2mm moles removed and am awaiting those results as well. She referred me to an oncologist here who is a melanoma specialist just to get any questions answered, etc. and I see him Wednesday.

In the meantime, I'm freaking out. I have a three year old. We were going to try for another baby and now I'm scared to do that.  I'm rereading my biopsy obsessively, as the dr. who did my WLE barely discussed it with me. I'm posting it below if anyone has any feedback...it SEEMS good, but my biggest fear is it'll be more advanced after the WLE pathology.  WHY DOES IT TAKE SO LONG?! Ugh.

Melanoma In Situ

R/O DN VS MIS 4mm

There is an asymmetric proliferation of atypical melanocytes arranged as irregular nests and single cells along the dermalepidernmal junction as well as above it. In some areas there is more uniform arrangement of junctional nests and intradermal melanocytes in the form of a preexisting dysplastic nevus. Heavily pigmented melanophages are present in the dermis. The atypical junctional melaoncytes extend to the lateral margins. A severely dysplastic nevus was considered, but given the extensive pagetoid spread, a melanoma in situ arising in a compound dysplastic nevus is favored.

Amy

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jschwinck's picture
Replies 2
Last reply 8/11/2015 - 8:16am
Replies by: Mat, arthurjedi007

Recenlty mom was diagnosed with Melanoma. She has been strated on Keytruda treatment and scheduled to go on her second treatment this week so around 3 weeks in now. 3 Weeks ago tests were normal, now she had some more blood test done last week showing that her LDH levels were really high like above 4,000. Does this seem right? I can't find much information except for indicators and markers that don't tell me much for numbers that are not even close to that. I was underrstanding by some things I was reading that even LDH in the 300's is extremely high. Maybe I am not looking in the right place or reading something wrong I don't know.

 

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Beezer's picture
Replies 9
Last reply 8/11/2015 - 8:39pm

My beautiful sister went to be with the Angels on the 29th of July, she fought so so hard to stay on this earth for us, but unfortunately it was not to be, the ache I feel right now is worse than any pain I have every experienced, I miss her so badly it's tearing me apart, her husband and four sons are totally shell shocked and all we can do is hope our little Angel is at peace with no pain and we will love her forever 

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evieg's picture
Replies 6
Last reply 8/12/2015 - 3:07pm
Replies by: arthurjedi007, SarahA, dkeagle, Anonymous

We found out that my husband has 24 small brain tumors. He will be doing three weeks of Whole Brain Radiation .  When we met with the Dr. she said that when he is done with the WBR he will then have Biochemotherapy.  She said he does that or his other option is Hospice.  Needless to say we are devastated. Of course, my husband will continue his fight against this beast, but I know the odds are not in his favor. We were told that there is a 60% response rate and out of the 60%... 7-10% go into remission or NED .... The other 50% will get an extension of survival for how long? Of course, no one knows.   Just so so scary.

Would greatly appreciate any input or experiences you have had  good or bad... 

Thank you and God Bless each of you.

Evie

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tsykes1's picture
Replies 2
Last reply 8/9/2015 - 1:32pm
Replies by: tsykes1, stars

Needing some advise on how to tell if sun spots or age spots aren't a new melanoma.  

Terri Sykes

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cbeckner98's picture
Replies 7
Last reply 8/16/2015 - 11:04pm

Hi all,

My Dad just started Keytruda for his Stage 4 melanoma (with multiple lesions in brain and one in lungs; after doing WBR in June) but he has had significant swelling of one of the brain tumors which is now causing cognitive impairment.  He basically stopped eating/drinking last weekend at home, then we got paramedics to get him to hospital on Wednesday, he is on 8 mg of steroids twice per day as of Wed. night, and then now he is resisting eating again.  He is getting plenty of fluids - but we have a big meeting with the gamma knife/surgery specialist in Seattle this coming Wednesday and so are trying to figure out how to get him healthy again (or otherwise that doctor won't see him and/or won't work on him).  His largest brain tumor is located in his frontal lobe - and hasn't gotten bigger over the last two weeks but does have swelling around it.  Has anyone seen this kind of brain met swelling while on Keytruda?  Did the effects of it last long?  Besides increasing dosage of the steroids, what other options do we have?  The local hospital is pushing to put my Dad in hospice/a nursing home - but we haven't even tried a full course of Keytruda yet and only discovered his cancer in mid-June.  There must be other options!  Any advice on this would be appreciated!  We are not ready to give in to this disease!!!

Thanks,

Carrie

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Anonymous's picture
Anonymous
Replies 3
Last reply 8/14/2015 - 1:42pm
Replies by: Anonymous, Hayden30

Hello everyone, 

I noticed today "something" under my skin, which is about 1 cm (or larger???).  it has a pink-red circle about 5 on the surface, but it feels under the skin: not sure about the shape, but it is firm, attached to the overlyink skin (when taken between the fingers, it has a dimple sign associated with dermatofibroma), but movable agains a deeper tissues. I'll be trying tiger an appointment with modern ASAP, but Ian so scared. Can dermatofibroma be felt mostly under the skin??? Can subq have a dimple sign????  Thanks for listening. I am a Stage 1 B patient, 11 years after diagnosis.

 

 

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JenJen12's picture
Replies 6
Last reply 8/10/2015 - 12:40am
Replies by: cavsnut, JenJen12, Linny, stars, Becky

Hi all,

 

Just wanted to check in! Realized I haven't been on the forum for at least a year or two. Just hit my 6 years NED after my first oncologist gave me 6 months to a year! .. For those of you that don't remember...

Diagnosed in 2009 at 25. Stage 3 with less than 1% of isolated tumor cells in sentinel node.  First oncologist was horrible and told me there was nothing to do because I would die from it in the next year and there were no treatment options. Refused to accept that and did my own research. Found UCSF Melanoma Center and Dr. Daud...both amazing!!!!! Not many choices back then..and told I was BraF negative etc..! I remember when i asked him my prognosis, he smiled laughed and told me not to stop buying bananas because there was a large chance my melanoma would NOT come back. Genetic testing could not ID known mutation type so we decided on Interferon for a year. HIgh dose for a month in hospital and then 11 months of self injections. Wasn't easy but wasn't horrible. Able to attend classes and workout after first month or two.

Changed careers from Law to Nursing. Won MRF courage award in 2010 at the SF gala. Just had my 6 year NED date and though I put up a little resistance :) ..my oncologists stopped all PET/CTs and moved visits  annually instead of 6 months.  During the past 6 years I have changed careers and received my Masters in Nursing and will be an oncology nurse!! My nurses and experience have changed my life for the better. Excited to give back to those who helped me so much. There is hope ! Even when told there isn't any :) 

Sad to come on here and read about Jerry after seeing his FB..he was one of the first people who befriended me on this forum years ago and helped me navigate my new diagnosis. He defintiely was an angel and will be missed. 

To all the old faces! Hi and thank you for all of your support over the years! 

 

JenJen

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Hikeratheart's picture
Replies 7
Last reply 8/15/2015 - 1:04pm

 Hi everyone,

I have been reading the forum for a few months, it has helped me tremendously through my diagnosis.

I need help deciding on interferon.

Here's my story:

On May 21st, 2015, I had biopsies for two spots, one on my back, which was thin, and another more concerning on my right arm. I was diagnosed with melanoma at the end of May. I have 2 primaries. Stage 2b. 

Surgery on July 1st -   SNLN biopsy, negative for majestic melanoma.   ( yeah, happy dance)

Wide re-excision of my right arm, biopsy: melanoma in situ, margins widely free of involvement, negative for invasive mel.  Breslows 4.5 , Clarks level 5. The depth concerned me!

Wide re-excisional biopsy of skin on my back,  .4 mm. Clarks level 3

negative for residual, invasive and in situ melanoma.

My oncologist, Dr.  Robert Taylor in Milwaukee (Aurora health) has advised me that since I have 2 primaries,  I should (could) do interferon for 4 weeks (5 days) and then  48 weeks /3 days.  On Monday, 8/10, I am getting a second opinion  from another oncologist. 

 

Please advise me me on this. If I understand correctly, I am in the gray area?  Is interferon all that is available or offered at this stage, so that's why their advising it? This is a big decision for me. I am a healthy 60 yr old woman with 2 new grandkids.  I really want to do everything possible for my good health, but have learned that it's a controversial treatment. 

Thank you for any help you can offer.

 

Kathy  McC.

 

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cckma's picture
Replies 9
Last reply 8/10/2015 - 2:47pm
Replies by: Maureen038, cckma, Anonymous, Ed Williams, Janner

Six weeks ago a dark spot with pale brown edges appeared on my left big toe nail that covers about 35% of my total nail. I went to my doctor and he suggested that we wait a month and see if it moved at all with the growth of the toenail. After a month went by I didn't detect any movement of the blemish so I went back to the doctor and he set me up with a dermatologist. The dermatologist looked at it and thinks it's a hematoma but to be safe she scheduled me for a biopsy. Later that evening I compared close-up photos with a ruler from six weeks ago until now and I have determined that it has moved a little bit with the growth of the toenail. Should I keep the biopsy appointment ? Cancer runs rampant in my family and this blemish appeared for no reason at all. I almost never bruise, I am sure I didn't injure my toenail, but it is moving with the growth of the nail. It does have various shades of brown and black in it, and a straight vertical edge in the middle of the toenail that doesn't reach either the cuticle or the tip of the nail. Is this ridiculous to get a biopsy? I'm going to lose my nail in the process. Everything I have learned about this suggests that if the spot moves with the growth of the nail then it isn't melanoma, but is it gauranteed to be benign just because it moves outward as the nail grows ? The portions I can measure have moved, but I have no way to know if all of it is moving as it is large and irregularly shaped. Thank you for your input!

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Millykamp's picture
Replies 9
Last reply 8/8/2015 - 11:53am
Replies by: Anonymous, Janner, Linny, stars, Millykamp, Momofjake

Still learning a lot but still getting overwhelm.. I haven't seen the specialist yet.. So many questions.. 

 

I I do have a few that I am wondering.., who it being an early stage cancer. 

can body ache be part of the cancer? 

The area where the lymph node are located could it be tender at times to touch but not swollen? 

Can feeling tired all the time be part of it as well? 

 

I also want want to thank everyone for amazing support groups.  This place have really help me u durst and most and still learning 

Melissa 

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Momofjake's picture
Replies 16
Last reply 8/10/2015 - 1:22am

Hi, I have read for months but haven't posted much. 11 mo ago my then 17yr old son was diagnosed. Now stage 4. It's everywhere(not sure about brain). I think in a weird numb way we were used to each scan being worse than before. He is now on keytruda. He had his 3rd dose yesterday. He feels great and looks better. We see shrinking tumors on his skin. He really feels it is working. A month ago I really felt like I would lose him soon. It's a miracle for us. So, he is now 18 and never talks(some grunting and lots of ignoring)and of course in in able! He has had it in his spine for 4 months with tumors 2.7cm. He has almost no pain but with the keytruda working I don't want permanent spine damage! I finally got him to see the radiologist. He had a large dose of radiation on his lower spine plus his infusion of keytruda/zomata yesterday. He is in a lot of pain in his legs. Poor kid! Senior year: freckle on his head, swollen node behind ear, 8 plosives nodes and saliva gland. Biochemo, radiation, new spot, metastatic, scan, liver, break to graduate, grows again, lungs. Spine, bones. Femurs, muscles, skin, ribs...he does everything...diet, natural things, he plays every sport everyday, sees friends all the time, tells NO one he is sick, plans college but has been stuck w mom for the last year a ton(worst thing ever for a 18yr old boy), and now more radiation. I see the keytruda shrinking things and he will have scans mid sept. Hoping we finally have a scan that says things are moving in a better direction. It's been full time cancer for a year. Praying for a good college send off as he learns to take care of himself mostly and live the life of a boy his age!! He is treated at huntsman in Utah and is going to school just 30 mi. From home! 

Wondering about any spine mets, radiation there(went through his tummy), and always open to keytruda experiences! Been a year with a heavy heart as a mom, but also many blessings. You learn to live in the moment, what really matters and how to be grateful in any situation!

Thanks for enduring the novel here! I have been helped here many times. Prayers to all my friends fighting! Keep it up!

kerri--mom of Jake

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jahendry12's picture
Replies 14
Last reply 8/11/2015 - 6:25pm

Just wanted to take a moment and ask everyone to say a prayer for T Jerry. I recently heard he is not doing well. He has been a great support, friend and wealth of knowledge to many. 

 

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