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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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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pookerpb's picture
Replies 4
Last reply 1/24/2016 - 1:27am

So after the last two scans were done yesterday exactly 2 weeks apart, it has become apparent that we need to do something drastic. Hubby is going to start the high dose IL-2 and Aflibercept combo trial in about 10 days if all tests come back next week ok for stress test, etc.

We have reached a crossroads where the disease progression is moving very fast and every day becomes more symtomatic and more painful.

After failing multiple trials with initial response, then progression, we are going to try another but its one we we have not been wanting to do EVER....well, the IL2 pat of it. Of course we know the statistics of the IL2 and how miserable the treatment can be. Please pray he can get some relief from it after, even if only for a short time until something new comes our way.

 

Krista

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OkieJen's picture
Replies 11
Last reply 2/5/2016 - 11:24pm

So, just wondering if anyone else is worried about the new report on pregnancy and melanoma. I am 40 years old and diagnosed with a Stage 1a melanoma last September (0.25mm breslow depth reclassified from 0.4mm following a re-read at MDA and <1 mitotic figure). I had a subsequent WLE at MD Anderson in October. (no SLNs biopsies taken). I have a two year old daughter and when looking back at photos my melanoma was present when I was pregnant. I have a recheck appointment at MDA in April for thoracic radiographs (aka chest x-rays) and am seeing my local dermatologist for a skin re-check in February. According to the report, melanoma in pregnant women or women diagnosed soon after giving birth  (including stage 0 and stage 1) are at increased risk of metastases and their melanomas are more aggressive. Just wondering if I should be getting rechecks more often rather than every 6 months. Even more spooked now.

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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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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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jennunicorn's picture
Replies 11
Last reply 1/26/2016 - 6:35pm

It has been over two weeks since my second infusion. My next one is on Monday, the 25th.

Not a lot different from the first infusion. Mostly just fatigue. Not that fatigue is easy, it's made it very difficult to work as much as I'd like to, since my job is very demanding. But, it's better than a lot of the other side effects. 

I noticed for about a week and a half after the second infusion that I had days where I wouldn't be hungry. Not that I was nauseous or anything, I just noticed that my usual (very active) appetite was not there. It's back this week, thankfully. My birthday is tomorrow and I'd really like to enjoy a nice dinner and some cake!

Of course, I stay realistic knowing that things could be very different after my third infusion, but, I will continue to think positive thoughts and hope for continued ease through the rest of my treatment.

 

 

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Renate's picture
Replies 13
Last reply 2/4/2016 - 8:39pm

Hello!  I am brand new to this forum.  I was diagnosed with Melanoma 2 weeks ago - 1.3mm invasive spindle cell melanoma on my thigh.  I had surgery last week and they were successful at removing it all but did find microscopic melanoma cells in 1 lymph node.  Having Pet Scan and MRI on Friday and see DR on Monday.  He said I will need to remove the lymph nodes in my groin.  Im trying to stay present and not let my mind race - I have to beautiful boys to raise.  Can anyone tell me what to expect - I know i need those scans back.  Im most curiious about how will my leg be affected - do I have to wera a sleeve?  Do I have to trake interferon?  Should I?  Is this a life sentence now?  Thank you for any input.  I know Ill have to wait and see but trying to be proactive.

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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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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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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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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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Anonymous's picture
Anonymous
Replies 7
Last reply 1/28/2016 - 11:22am

Can anyone tell me if during your IL-2 treatment while receiving infusions the week in the hospital, if you needed someone there with you?  My husband will be starting a new trial and while in the 5 days I wont be able to be with him. I worry that he will feel too sick at times to be able to either ask the staff for things he needs, or to get them himself....like a snack or something.

He doesnt want me there as he says he will be well taken care of and feels more at peace when I am home with our children. The hospital is 3 hours away and he doesnt really want either of parents there either. They are not a good support system for him. Instread of focusing on his needs, etc. they are torn and apart and so distraught (they are both in their late 70's) over this they upset him more.

Anyway, I would just like to know how feasible it is for him to do this without me?  I dont want to be worried sick if I am not there, even though I can be there if need be at any moment.

thanks.

 

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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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