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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Stlmag's picture
Replies 7
Last reply 1/23/2016 - 4:13pm
Replies by: btcedarr, WithinMySkin, Anonymous, Stlmag, jamieth29

Timeline of my husband's melanoma journey:

10/13/15  Diagnosed with amelanotic melanoma, Stage 2B

10/14/15  CT chest lungs clear

10/19/15 Sentinel node & wide excision. Stage 3C

                 8 mm deep, BRAF, wild type, 4 of 5 axillary lymph nodes pos/removed

10/30/15 first oncology visit.."it has prob mets to your brain; you need to go to Vanderbilt"

11/09/15 MRI brain clear

11/12/15 PET scan clear

11/16/15 Vanderbilt visit; offerred Yervoy/Interferon trial

11/18/15 Made appt @ MD Anderson

11/20/15 2nd oncology visit. Yervoy approved 10/28/15 for Stage 3. Will begin that.

12/09/15 First Yervoy tx. Cancelled MDA appt

12/30/15 No more Yervoy due to Grade 3 derm reaction

01/19/16 Melanoma lesion reocurrs in surgical scar; biospsy

01/22/16 Biopsey results confirm- lesion is melanoma

 

 

 

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Happy_girl's picture
Replies 25
Last reply 1/23/2016 - 12:03pm

I know this topic has been brought up before.  I have tried to do a lot of research about it on my own. Is there a true correlation between pregnancy and melanoma.  I was diagnosed 6 weeks After giving birth to our first baby.  She will turn 1 in a month. ( hard to believe! :). We are not ready to have another one yet, but I have just been thinking about if it's a reality or not to even think of having another baby.  I went to mskcc for a 3rd opinion.  The dr I saw there, when having more children was brought. Up, said wait about 3 years.  My oncologist at the james center (Ohio state) said wait a year.  I'm just curious what your thoughts and opinions are.  I want to have another one, but also don't want to leave my daughter and husband.  I'm not sure what to think. Help! 

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Polymath's picture
Replies 8
Last reply 1/23/2016 - 11:18am

I have had a real tough case.  After initial treatment with Zelboraf, which worked temporarily, but delivered every single side-effect in the book, and some, it has been all downhill since.  Two years of following the standard of care with all the FDA approved drug therapies, and a clinical trial thrown in when FDA options were exhausted,  All unable to stop progression (perhaps some slowed it down) I finally was able to join the many on the Ipi/Nivo combo once it was FDA approved and am currently on it.  One of my issues is my tumors grow very large.  Internal, and subcutaneous typically grow to 8-9cm in size, and sub-q tumors this size can be painful, and definitely disfiguring as they bulge right clothing.  Last year I treated one large sub-q tumor on my back because it was causing so many problems and discomfort.  After a short,(5-times) but very powerful treatment regime, I remained frustrated at the slow pace of effectiveness.  It took about 10-weeks before I started to notice the tumor shrink, and after a couple more months the tumor was 90% smaller and no longer caused any problems.  Now while on immunotherapy I have had radiation again, on two large tumors near my clavicle, and may be benefiting from the so-called "triple threat" whereby radiation added to the Ipi/Nivo combo seems to have an added benefit to the effectiveness of the combo.

So finally my question.  Right now the one easiest to measure sub-q tumor which was radiation treated has begun to shrink rather rapidly.  While I am thrilled that perhaps drug therapy is finally working, there's this little gnawing voice in me that says maybe this rapid shrinkage is a result of the radiation, rather than a systemic response to the drugs.  My radiation oncologist says that this rapid shrinking which started immediately after radiation treatment is unlikely to be from the radiation.  Its more likely these tumors would respond the same way as prior treatment and take months, before shrinking noticeably.  Anyone been in my shoes and can offer their experiences?

Gary

 

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Anonymous's picture
Anonymous
Replies 7
Last reply 1/22/2016 - 9:20pm

What's the typical plan? If there is response to the braf and mek.. then what? I have read it stops working after a few months. Do doctors typically start immunotherapy when that happens?

Rebekah

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Anonymous's picture
Anonymous
Replies 2
Last reply 1/21/2016 - 10:47pm
Replies by: sayres, Janner

I had an mole that was close to melanoma removed through a wide excision. (I know nothing like what you guys are dealing with and I am so sorry for you!). Stitches out...for 2 weeks now. It itches. Is that normal??

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btcedarr's picture
Replies 5
Last reply 1/21/2016 - 10:20pm
Replies by: btcedarr, Anonymous, AshleyS

Hi. I am new to this site and have been following it awhile before posting. I was diagnosed on 10/13/15 with melanoma on my calf after a shave biopsy. The mole had been there my whole life and I saw no considerable changes, never itched or anything, but the dermatologist suggested it be biopsied during my annual exam. I had a WLE and SLNB on 10/22/15. I am healing well with after a bad cellulites at the SLNB incision and some stitch spitting at the WLE. I was staged T1b, at least .59mm, mitotic rate of 3, breslow III/IV. Nevoid and desmoplastic. WLE had clear margins and SLNB was negative. I now have checks every 3 months.

My question is in response to some posts of very similiar experiences and then finding it in the lymph nodes years later. If it wasn't there initially, is this usually another primary or it was missed initially. As you can tell, I am confused.....

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Queenbee's picture
Replies 4
Last reply 1/21/2016 - 4:48pm
Replies by: ldub, WithinMySkin, jennunicorn, Anonymous

I just had a wide excision surgery on upper arm, after receiving a melanoma diagnosis 5 days prior. What do you recommend for home care? I have 12 stitches total (some inside that will dissolve and some external that need removed). The nurse told me but I was to nervous to process and remember. Thanks!

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Anonymous's picture
Anonymous
Replies 7
Last reply 1/20/2016 - 5:22pm
Replies by: Scooby123, Gene_S, emagdnim83, Anonymous

My husband has been fighting Melanoma since 2011. It was diagnosed stage 3B but progressed to stage 4 in 2014. Overall he has been successful, killing 14 metastasis in 5 years. But we found out last week despite his most recent treatment the cancer spread to his lung. He's feeling very defeated and I understand why. I've been here with him through the entire journey. But lately he sleeps until 5 every day and has no interest in taking care of daily tasks. He's had a short fuse and flips out if I don't do something right or try to wake him up or suggest he does anything. We are waiting to see if anything more can be done, so I'm sure it has a lot to do with the stress. I just need to know I'm not alone in dealing with this. I hope the short fuse gets better and we don't have to have this anger become a new norm. It is difficult to bear!!!

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Christine.P's picture
Replies 6
Last reply 1/20/2016 - 11:43am

I am experiencing some very painful mouth sores covering the full inside of my mouth - gums, cheeks, tongue. My current doctor says all he can do is prescribe a lidocaine gel and that I should suck on ice. I asked about prescriptions (antibacterial, maybe?) like I had when I had thrush a couple of months ago and he said no. 

Has anyone has a prescription that worked or any other remedy that helped? The thought of having to not be able to eat or talk for the next 3 months (when my ipi/nivo infusions end) makes me cry. 

I am actually in the process of transferring my care to a better hospital with an actual melanoma specialist where I hope to be treated more compassionately (long story) and will also ask her at our first appointment on Friday. 

Thank you for your support and feedback. 

Christine P. 

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Anonymous's picture
Anonymous
Replies 2
Last reply 1/20/2016 - 9:25am
Replies by: Lil0909, Andrew1725

Hello all, 

I have almost reached my 6 months of Interferon treatment and this doesn't seem to be getting any easier. (Not sure it's supposed to.) I have ear pain, fatigue, loss of balance and migraines almost daily; I'm on Imitrex and Topamax. I drink tons of water. Also, going to try ginger root and peppermint oil. Also, noticing extreme muscle tightness in my neck, shoulders and base of my head. I hate to be negative but I have been pretty miserable lately. Wondering if anyone has any suggestions on how to ease any of these side effects.

Jen Stanley

Stage IIIa 

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karima49's picture
Replies 2
Last reply 1/20/2016 - 8:43am
Replies by: Rita and Charles, Mat

Hi there. My mother was just diagnosed with Stage 4 melanoma in December 2015. It has spread to her lungs, liver, thyroid and just recently her bones and spine. She has been on the Mekinist and Tafinlar combination for 2 weeks now. I personally haven't seen much of a difference but she said she definitely has. She says she feels more aware. My question to you all is, has anyone been on this combiation of meds and also used the cannabis oil? I have researched the oil itself and it has done some amazing things. I got my hands on some (which is not easy) and my mother is scared to try it that it may interfere with her meds. I'm trying not to give up hope and want her to try anything there is that may help. Can anyone that has experience this please respond and let me know if we should try this or ask the doctor or...? My mother is my very best friend and I'm so scared of losing her. Thank you. 

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Scared99's picture
Replies 4
Last reply 1/20/2016 - 6:15am

I wanted to thank those of you who responded to my biopsy question.   I was hoping for a few more pieces of information from those of you with melanoma knowledge. 

 

Since my dermatologist visit in July I have been obsessing over my moles and regretting many past decisions of mine.    Most of my moles are very dark and in the skin,  When I google them it appears they are junctional nevus.  I had one biopsied in July and it came back very mild atypia.  I am nervously waiting my two other biopsy results from this week.   These moles  started appearing in my 20's and I continue to get them popping up in my 30's.    How much higher risk does this place me for melanoma ?  I have about 7 of them about the size of an eraser or slightly smaller and around 100 very tiny ones that you cant see unless you are on top of me.   I had one derm tell me i was very high risk and want 6 month visits.   Another tell me not to worry about them and wanted to see me every 3 years and the last one told me I have a slightly higher risk and wanted to see me every year.  

 

I am also getting conflicting info on the link between melanoma and the sun.   I had a ton of sun exposure my entire life.  I usually get a slight burn in the spring and usually get very dark by the end of the summer.   I also used tanning beds in my 20's.     I feel like this has also raised my risk significantly.    No one in my family has every had melanoma.  

Does hair color, skin type and eye color elevate the risk as well ?   I have very dark brown hair,  dark green eyes and am unsure of my skin type.   I do not think I am fitzpatrick skin type 1  or 2 as I do get very dark...  I might be a fitzpatrick skin type 3 ?   

Thank you all.... I am looking for any info you all can provide.

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SunnyTheNurse's picture
Replies 6
Last reply 1/20/2016 - 12:47am

Hi there, I'd love to hear from anyone else diagnosed with this very rare cancer. 

I'm 39, live in Australia and have had two large growths removed by way of radical hysterectomy. Furthermore, biopsies from that found cells in my vagina and removed pelvic lymph nodes. I've had radiotherapy and am now about to begin a new immunotherapy treatment. It's uncharted waters in terms of how to beat this. Please share your approach. Erin

Erin 

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amandak1026's picture
Replies 5
Last reply 1/19/2016 - 6:45pm
Replies by: amandak1026, Janner, Anonymous

Hello,

My mom was diagnosed a few weeks ago. Her first biopsy showed a melanoma on her leg with a Breslow's depth of .66mm and a mitotic rate of 1. They took the tumor out last week, and the path report came back with the Breslow's at 1.03 and a mitotic rate of 2, and assuming no spread, staged her at IB. She did NOT do the SNB.

Now they're recommending she go in for a lymph node dissection. I'm very confused, as I thought the dissection was a full removal of the nodes because cancer was found there. But they don't know that yet? Is it normal for a dissection to be done as a prognostic tool? My mom is terrified, and I'm trying to find out as much information as I can for her, so I'm sorry if this is a dumb question. 

We meet with the surgeon on Thursday to discuss.

 

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Anonymous's picture
Anonymous
Replies 1
Last reply 1/19/2016 - 4:52pm
Replies by: jodaro

I am hoping someone can shed some light on moles, atypical moles and melanoma.   I always thought my moles were normal.   I have a bunch of very dark ones that are all flat.  Some of them are so dark brown they appear black at times.   I had my first mole check in the summer.   The dermatologist made a comment on my funny moles and removed a small one from my back.   This mole came back with mild atypical.   I was told to come back every 6 months.   I went to a new dermatologist that was closer to my house.   He did not bring up my moles at all except when he said the good thing about having a good deal of moles is that it makes it easy for me to see how your moles are supposed to look.    That visit was in Dec and he told me to have my wife check my moles every month and keep an eye for any changes.   He wanted to see me back in two years.

I had a seperate emergency and needed to see a dermatologist asap.  I had an allergic reaction to something.  I went to another dermatologist last week.   While examining my rash he commented on my moles.   He then asked if I wanted a body exam.   He removed a mole from my chest which I have had my entire life. He said that looked atypical.

Today I was examining my moles and realized almost none of them are perfectly round.  They all have variying shades of brown so they are not all the same color.   I then noticed one on my love handle that looks like the rest of my moles dark brown but it has 4 distinct dark brown spots ( almost looks like 4 pin head spots visible in the mole When I Spread the skin apart these 4 dark spots are visible. .    My question is how concerned should I bewitht this ?  Considering two derms have examined me in a month ?  Should I go back and show this odd looking mole to the dermatologist again?  Also because most of my moles look the same are not perfectly round do I have dyaplastic nevus syndrome or are these normal tiny moles and thats just the way they appear on my body ? 

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